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April 2024

Click here to see the original campaign with photos.

From the Chief Strategy Officer

Dear readers,

Our staff is in high celebration mode! Today, we’re launching the open application window for our 2024-25 Partners in Policymaking® class. (It feels like confetti should fall from the ceiling as I type that sentence!) See below for details and how to apply. 

Next week, we’ll be gathering in person with our Partners alumni network for the first time since before COVID. We’ll be celebrating 30 years of the program (read our special issue of our Breaking Ground magazine about that milestone) and looking to the future.

Partners in Policymaking is a powerful way for members of the disability community to:

  • come together,
  • build their leadership skills and knowledge,
  • and join a powerful network that is helping to shape the future for people with disabilities in Tennessee. 

The Partners network includes hundreds of people of all different backgrounds and experiences. This diversity helps us find solutions and policy ideas that work for more people. Sometimes, finding those solutions is a messy process! But it’s a cliché for a reason: we really are stronger together. Our Partners network is a powerful example of this truth.

In addition to these big Partners milestones, we’re also gathering for a quarterly Council meeting with our Governor-appointed and agency members tomorrow. It’s always a high point as we gather with the citizens who guide our work for change. (Not to brag – okay, maybe a little – but visitors who attend our meetings regularly tell us how impressed they are. These are not your average state government meetings. Want to see what we mean? Council meetings are open to the public – see our schedule for the rest of this year and plan ahead to attend!) 

And when you’re done reading this newsletter, take a minute to enjoy the beautiful Tennessee spring outside!

Jolene Sharp
Chief Strategy Officer
TN Council on Developmental Disabilities

NOW OPEN: Accepting Applications for 2024-25 Partners in Policymaking Class!

Partners in Policymaking® is a FREE leadership and advocacy training program from the TN Council on Developmental Disabilities.

Over the course of 8 months, Partners scholars will learn skills and resources to answer:

  • What does a good life look like for me, my family, and other people with developmental disabilities?
  • What is needed for that vision to come true?
  • How can I help make change toward that vision?

Get more details, including the 2024-25 class schedule, and apply on our website. We will accept applications through May 20.

Get to Know a Leader: Sydney Clark, TN Department of Health

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Today, we're introducing you to Sydney Clark, Maternal & Child Health Emergency Preparedness and Response Coordinator with the Division of Family Health and Wellness in the TN Department of Health. Sydney is shown to the right with her service dog Jano during a recent trip to Scotland!

Tell us a bit about your career background and your current role.

I currently work as the maternal and child health emergency preparedness and response coordinator for the Department of Health. Prior to this, I worked as the disability and preparedness specialist for the State of Tennessee.

In my current role, I work to increase inclusion in emergency preparedness processes for women, mothers, infants, children, and youth with special healthcare needs. I did something similar in my previous position for the broad population of people with disabilities. I’m super passionate about increasing integration of populations with access and functional needs in emergency preparedness.

What is one thing you’re working on right now that you are excited about?

 A project we are working on right now that I’m excited about is a "table top in a box" project. These are ready-made scenarios that different professionals can use to sit down and discuss emergency preparedness. (For example, professionals working in emergency management, public health, or healthcare facilities might use these kits).

This project is specific to access and functional needs, like

  • people who have low vision/are blind
  • people who are Deaf or hard of hearing
  • people with autism spectrum disorder; and
  • older adults

... who may have specific considerations that need to be planned for.

What is one of the biggest lessons you have learned from working with TN’s disability community?

Making sure you create strong relationships and have conversations with the people that you are trying to help is extremely important. I know that I don’t know best how to help every single individual at all times, so having these conversations and creating trust is extremely important.

A key takeaway for sure has been: it’s not an assumption to be made, but a conversation to be had.

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?

Educating/making sure everyone is on the same page. We have so many people with such good intentions, but without people being informed and on the same page, we aren’t able to do as much. It makes things a little bit challenging in certain situations.

What are some activities you enjoy doing in your free time?

In my free time, I love to travel, read, do yoga, and I have recently gotten into pottery.

When should members of the disability community reach out to you or your team directly?

Reach out to me when you have questions about how to best to equip your community for emergency preparedness: sydney.l.clark@tn.gov .

Disability Policy Corner: Council News to Know (April 2024)

We are down to the final days of the state legislative session. What a whirlwind it has been!

We hear the legislature is likely to wrap up next week. The House and Senate passed the budget bill just today (Tennessean: Tennessee lawmakers pass state budget with $1B for two key bills yet to win approval).

 I want to highlight 2 big updates since our last e-news came out. (Read our Jan., Feb. and March editions for more info and stories about some bills we followed and worked on during this legislative session.)

  • Medicaid buy-in bill (“TennCare for Working Individuals with Disabilities Act” - SB2791 / HB2940) – This bill creates an option for people with disabilities who do not financially qualify for Medicaid to pay monthly for access to services ONLY offered by Medicaid - services they cannot get under other kinds of health insurance. It still must officially pass the House and Senate during next week’s floor sessions, but we expect it to do so! We believe it will have a positive impact for many Tennesseans with developmental disabilities. Right now, without a Medicaid buy-in option (we are one of only a few states without one), many Tennesseans with disabilities are faced with extremely tough options like being unemployed or spending all their savings to afford care they cannot live without ... or going into poverty to become eligible for Medicaid. You can read a letter we sent about the bill here and see a news article featuring Council member Bliss Welch here.
  • The bill creating the new TN Department of Disability and Aging was signed by the Governor last week – Read the press release from the Governor’s office here. This is a big deal! This change means opportunities to align the state’s policy efforts across the lifespan (housing, transportation, workforce, support for caregivers, information & referral) for aging Tennesseans and those with disabilities. Plus, it is combining resources previously in two different agencies into a single cabinet-level department. The biggest challenge we expect is maintaining expertise and focus on subgroups in the future, especially Tennesseans with intellectual and developmental disabilities. 

These two bills are excellent examples of how the Council works on policy all year long.

Advocates have been meeting and providing input about these two issues for months. After countless committee hearings, fiscal note revisions, amendments and edits, legislative meetings, and other efforts … the passing of these bills is really just the beginning of change. Passing a bill in some ways is step 1! Now the rubber meets the road, so to speak. The Council will be “at the table” for the next steps: figuring out what it looks like to put policy into practice to change people’s lives for the better.

We want you to come along with us. Tell us your ideas, concerns, questions, experiences – we learn from all of it and take those thoughts and stories into our work daily. Email us anytime at tnddc@tn.gov.

Emma Garton,
Policy Director

Feedback opportunities

State policy news and events

National news

Federal policy updates and events*

(*Sources for federal legislation and events include policy newsletters from The Arc U.S., Association of University Centers on Disabilities, Family Voices, the Administration for Community Living and more)

March 2024

View the original campaign with photos.

From our Chief Strategy Officer

Happy Developmental Disabilities Awareness Month!

Have you been following along with #DDAM2024 on our Council Facebook feed? We’ve been sharing Tennessee and national resources to support belonging for people with developmental disabilities.

The need to belong is core to every human. We know that people with developmental disabilities often face extra barriers to belonging. Developmental Disabilities Awareness Month is a great time to revisit what it takes to belong and ask: How can I help create belonging for people with developmental disabilities in my community?

Many of you know that my daughter, Lina, has Down syndrome. My husband and I have spent hours this week supporting her in dress rehearsals for her elementary school’s production of Moana, Jr.  The performances are this weekend, so it’s crunch time for 90-plus 4th and 5th graders.

Participation for Lina doesn’t look exactly like it does for her non-disabled castmates. It took several weeks of rehearsal before she joined her ensemble group on the stage. So far, she’s opted to let a buddy deliver her spoken line. She often shows she can pull things together at showtime. But even if she doesn’t say her line this weekend, she is part of something big. Her castmates know Lina. They flexibly adjust to accommodate her. They welcome and celebrate her participation.

Belonging doesn’t happen without the choice to include. It happens when people with and without disabilities live, work, and play together. By sharing our lives, we learn to value each other as vital parts of the whole.  

This was the vision of the Developmental Disabilities Act, our Council’s guiding federal law. It created councils like ours in every state to:

“assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.”

We’ve come a long way in Tennessee since the DD Act was first passed in 1970. But there is much more work to do. We speak daily with self-advocates and families who are struggling to find supports that meet their needs. This Developmental Disabilities Awareness Month, join us in recommitting to the work of true belonging for people with disabilities in Tennessee. 

Jolene Sharp
Chief Strategy Officer
TN Council on Developmental Disabilities

Get to Know a Leader: Alison Gauld, TN Department of Education

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Today, we're introducing you to Alison Gauld, Low Incidence and Autism Coordinator in the Special Populations Division of the TN Dept. of Education. Alison represents the Dept. of Education on our Council. She frequently supports our Governor-appointed Council members with solving issues related to special education in their communities.

Tell us a bit about your career background and your current role.

I am a special education teacher and taught in both Arizona and Colorado before coming to Tennessee. I taught for 20+ years, and all but 2.5 years have been in low incidence (CDC).  (“Low incidence” is a general term used to describe disabilities that occur in low numbers, or are less common, within the general population.  A few examples of low incidence disabilities include: intellectual disability, multiple disabilities or severe disabilities, orthopedic impairments (physical disabilities), visual impairments or blindness, and hearing impairments (hard-of-hearing) or deafness.)

In my current role, I work with educators, district and school leadership, families, policymakers, and agencies on behalf of students with disabilities.

What is one thing you’re working on right now that you are excited about?

I am fortunate to have a job where I get to work on behalf of student with complex needs. The Teaching All Students initiative is some of the most rewarding work I do. This project funded by a federal grant is a training for high school teams on how to increase inclusion and career outcomes for students with complex needs. The high school teams include a:

  • school administrator,
  • general education teacher,
  • special education teacher, and
  • district special education director.

The teams attend a week of training every summer and receive coaching throughout the year for three years.

But I am also excited to increase the time with teachers leading professional development. I have some ideas for new learning that will empower teachers to achieve the dreams they have for their students.

What is one of the biggest lessons you have learned from working with TN’s disability community?

Words matter. A single word can hurt, heal, or empower another person. We each have experiences that add meaning to the words and phrases used by others. There are also words that unintentionally limit or create barriers. For instance, I appreciate disability awareness campaigns, but I would welcome a disability empowerment movement. By changing “acceptance” and “campaign” to “empowerment” and “movement,” I changed the entire message and goal.

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?

I would love to shift the lens we look through to one of hope and empowerment. Individuals with disabilities can absolutely, 100%, have a rich and meaningful life. But it requires all of us to believe in heart, mind, and action that every person is an essential part of our community and when a person is not an active member, all our lives are impacted by that loss.

What are some activities you enjoy doing in your free time?

I am an avid reader with a life-long passion for mysteries and novels. I also enjoy lifting weights, crafting, baking, trying new restaurants, or things that take me outdoors, like walking or running.

When should members of the disability community reach out to you or your team directly?

I am here to support all students and families, so you can reach out any time. If I am not the person that can help you, I will connect you to that person. Alison.Gauld@tn.gov, 615-854-9520.

Policy Corner: Council News to Know

Last month, I shared information about Disability Day on the Hill and a few bills that the Council is following.

Since then, it's been an action-packed month in the world of public policy. Here are some highlights - see related photos below!

Every year during legislative session, I am humbled and impressed by our Council members, Partners grads, and other disability advocates who may feel uncertain or nervous about speaking to their legislators but show up anyway - or write letters or make phone calls anyway. They tell their stories. They talk about what issues are important to them. They express concerns about bills that they worry will have a negative impact on their families' lives. They ask uncomfortable questions to people in power. They engage in hard conversations and share creative ideas and are okay with saying "I don't know the answer to that question, but I can find out!" 


It's not too late to reach out this legislative session to tell your elected representatives about any concerns or ideas you have. Find their contact information here.

Let us know at tnddc@tn.gov what bills or issues are on your mind.

Emma Garton,
Policy DirectorThey get involved, even when it is not comfortable or easy, and I am so grateful

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Feedback opportunities

State policy news and events

Federal policy news and events*

(*Sources for federal legislation and events include policy newsletters from The Arc U.S., Association of University Centers on Disabilities, Family Voices, the Administration for Community Living and more)

Feb. 2024

From the Council's Policy Director

Readers,

It's a busy and exciting time in the world of disability public policy in TN!

We hope we will see many of you at the upcoming in-person Disability Day on the Hill events next week, coordinated by our friends at the TN Disability Coalition (TDC).

We're tracking a number of bills in the state legislature that would impact Tennesseans with disabilities. The legislative process can move FAST. 

Today, we're spotlighting 4 bills on our radar. If you want to stay more plugged in to state legislative updates:

Let us know at tnddc@tn.gov if you have questions!

"Pathways to TennCare" (official bill title: TennCare for Working Individuals with Disabilities Act (SB2791 / HB2940).

  • Also known in other states as "Medicaid Buy In", this concept allows people who don’t financially qualify for Medicaid (TennCare here in TN) to “buy in” to the program. They pay monthly to access services only Medicaid offers. Examples of these services only offered by Medicaid and not traditional health insurance plans include:
    • Personal assistance services to help people with disabilities with activities like bathing, dressing and toileting) 
    • Help paying for assistive technology or home modifications. 
  • Without Medicaid buy-in options, the alternative for people who need those services is to go into poverty and enroll in Medicaid so they qualify financially. TN is one of only 4 states without a program like this. These programs are structured differently in different states so the details vary.
  • The Coalition is leading advocacy efforts on this bill, with support from some of our Council members. Visit the Music City Wheels website to learn more and get involved (to join this effort, fill out this form).
  • Learn more:

Creating a new "aging and disability" state department (official bill title: Tennessee Disability and Aging Act of 2024); SB2098/HB2089

  • Right now, aging services and resources are overseen by the TN Commission on Aging and Disability (TCAD). Disability services are managed by the TN Department of Intellectual and Developmental Disabilities (DIDD). This bill, proposed by Gov. Lee (part of the "administrative package"), would bring together aging and disability services under the same agency (though TennCare would still have a role in overseeing Medicaid-funded services for both groups.)
  • The proposed new Dept. of Disability and Aging brings opportunities to align the state’s policy efforts across the lifespan (housing, transportation, workforce, information & referral). It may also bring challenges, like maintaining expertise on disability groups, like intellectual and developmental disabilities (I/DD), especially in the future when leaders may change.
  • Most of the bill language is very similar to the existing law that created DIDD, "Title 33", and the part of TN law that created TCAD. It brings those two sections together in a new part of the law: Title 52. Aging and disability advocates are reviewing the bill and submitting comments about it now.
  • Commissioner Turner of DIDD spoke to our Council at our meeting in January about the exciting opportunities that come with a big change like combining two agencies that serve groups with many overlapping and similar needs: Tennesseans with disabilities and aging Tennesseans. Common needs include long-term services and supports, affordable and accessible housing and transportation, using technology for support, and more.

Creating a new office of conservatorship management and registry (SB1921 / HB2516)

  • This bill would expand the current Office of Conservatorship Management in Davidson County to be a statewide resource in state government for best practices and neutral information about conservatorships (also known as "guardianships" in other states).
  • Right now there's no statewide data on how many people in TN have conservators, no training or guidelines for how to be a good conservator, and no tracking when a conservator is removed for abusing or exploiting someone in their care.
  • TN's Center for Decision Making Support is named as a required partner for the new office. (Read about the Center's history on our website.)

Adult-size changing tables (SB2484 / HB2690 )

  • This bill language supports the existing grant program under the TN Department of Intellectual and Developmental Disabilities that provides funds to businesses and local governments to install adult-size changing tables in their public restrooms. It puts some of the guidelines about the types of tables families need, like ensuring tables are powered and height adjustable and installed in family restrooms.
  • Additionally, through the budget ("appropriations") process, the grants will increase from up to $5,000 to up to $10,000 in effort to reach more applicants.
  • Tennessee is leading the nation in this effort, with other states now following our lead. Learn more about this issue on our website here, including how TN State Parks and the TN Department of Transportation are adding tables to parks and rest areas across the state.

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If you can't attend Disability Day on the Hill in person next week, you can email or call your legislators any time.

Even when the General Assembly is not in session (typically May-December), you can contact your elected state officials and meet with them in your own community. It is their job to listen to you if you are a voter living in their district.

Your story matters - share it. You don't have to have all the answers to policy questions or have a specific bill or solution to a problem in mind. There are no "right" things to say - just tell them how an issue or law impacts your life and family.

Since starting at the Council in 2010 as a policy intern, I have seen many examples of positive change happening because a legislator heard from just a few voters about a certain issue.

So - reach out and let your elected officials know what is important to you!

-Emma Garton
Director of Public Policy

Disability Policy Corner (Feb. 2024)

State policy news, events and feedback opportunities

Federal policy news, events and feedback opportunities*

(Sources for federal legislation and events include policy newsletters from The Arc U.S., Association of University Centers on Disabilities, Family Voices, the Administration for Community Living and more)

Study for people with disabilities who get SSI: help increase access to ABLE Accounts

Do you ...

  • Currently receive SSI? (Supplemental Security Income)
  • Have a disability that occurred before you turned 26 years old?

If so, you can participate in a study led by a researcher at the University of TN Knoxville and funded by the Social Security Administration. They need people with disabilities who get SSI to join an hour-long online conversation about disability savings accounts (ABLE accounts). Those who take part in the study will receive a $30 Amazon gift card. Visit tinyurl.com/ablestudy to learn more.
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Visit the TN Treasury Department's ABLE TN webpage here to see if you are eligible to start saving money today in an ABLE account.

New training for healthcare providers: how to best serve patients with intellectual & developmental disabilities

People with intellectual and developmental disabilities (I/DD) often:

  • get healthcare that is worse than healthcare provided to people without disabilities
  • live shorter lives than people without disabilities
  • have chronic medical and psychiatric issues

This project, funded by Wellpoint (formerly Amerigroup) and led by Vanderbilt University Medical Center, will train healthcare workers about providing good healthcare for patients with I/DD.

The project needs doctors, nurse practitioners, physician assistants, and mental health professionals who accept Wellpoint Medicaid insurance and who currently care for adults with IDD to participate in video-conferencing sessions. These sessions will meet for an hour twice a month, for six months starting in May 2024. The sessions take place at noon Central Time/1:00 Eastern. Participants will be paid, and the sessions will count for continuing medical education. Dr. Beth Malow is the Vanderbilt site director. For more information and to sign up, please contact: projectECHO@VUMC.org - share this with healthcare providers who may want to participate. 

Jan. 2024

Click here to see the original email campaign with photos.

From the Council's Chief Strategy Officer

Dear readers,

You may be riding out a snow week as our staff is here in the Nashville area. In my family, we have one kid we have to convince to go outside and another one we have to convince to come back inside! Snow or no snow, we hope you’re staying warm and safe through these cold weeks of winter.

In the world of public policy, the weather has slowed the start of the state legislative session. The work will be picking back up soon, however. We’ll keep you updated on bills we’re tracking for potential impact to people with disabilities. You’ll notice an expanded policy updates section in this newsletter. We may also send special alerts to policy news subscribers on any time-sensitive issues or opportunities for input. Make sure you’re subscribed to our public policy updates to get the latest information as it’s available.

You’ll also see the news below that we’re getting our TN Partners in Policymaking® graduates together in April for an in-person reunion! We can’t wait to reconnect with our Partners network as we celebrate 30 years of the program and look to an exciting future together.

And one final item: I want to welcome back Emma Shouse Garton, our Director of Public Policy! Emma spent the last months of 2023 settling in with a new little one and is now back from parental leave. We’re so glad she had time at home with her sweet baby and we’re so glad she’s back with our team now. (Don't miss Emma's note and adorable picture below!)

Stay warm, everyone – forward into 2024!

Jolene Sharp
Chief Strategy Officer

Save the Date for Our 2024 Partners in Policymaking Reunion!

WHO: Graduates of our TN Partners in Policymaking Leadership Institute (from any/all years of the program)

WHEN:
Friday, April 26 - Saturday, April 27, 2024

WHAT TO KNOW:
The Tennessee Partners in Policymaking® graduate network will spend two days reconnecting in person in Nashville to celebrate the program's 30th anniversary and its bright future!  

WHAT YOU CAN DO NOW:

  • Space will be limited, so watch for registration details to follow soon. 
  • Help us spread the word to other Partners graduates in your network!

If you're a Partners graduate and are NOT getting our Partners newsletter: check your promotions and/or spam folders and reply to this email so we can make sure you're subscribed! The Partners newsletter will show as coming from Cathlyn Smith or from the Council's agency email. 

Note from Policy Director Emma Garton

Hello, readers! I am back from maternity leave and excited to begin work in my new role as public policy director. Since starting at the Council as an intern in 2010, I have felt one of the best things about councils on developmental disabilities is how we can work in so many different ways to create lasting positive change.

At the Council, improving public policy that affects Tennesseans with disabilities is one of our core work areas. (See our 3 state plan goals).

Through this work, we:

  • Track, summarize in plain language, and share information with Tennesseans about policies that impact people with disabilities. 
  • Share stories of Tennesseans with disabilities and families with policymakers to identify system barriers and solve problems.
  • Measure progress toward inclusion, self-determination, and independence.

Working on policy issues to improve the lives of Tennesseans with disabilities:

  • Happens all year long.
  • Includes efforts by our staff, our appointed members, graduates of our leadership programs, and collaboration with many other key partners.
  • Involves creating positive changes at the local, state and federal level and across all branches of government.

As our small team continues work on policy priorities like improving behavioral health supports for people with disabilities and increasing access to adult-size changing tables, we are grateful to our partners in the disability community who keep us informed about legislation that impacts Tennesseans with disabilities.

The TN General Assembly came back together on Jan. 9 for the second year of its 113th session.

Here are 3 ways you can stay updated along with us about bills that impact Tennesseans with disabilities:

  1. Sign up for weekly Policy Watch emails from Disability Rights TN (read the first issue for the 2024 session here - there's lots of great insider knowledge and helpful tips in this one, it is a must-read!)
  2. Attend TN Disability on the Hill events
  3. Join monthly meetings of The Arc TN's public policy committee and sign up for their policy alerts

In the meantime, we have a roundup of the following below for you:

  • opportunities for you to share feedback and give public comment to policymakers
  • news media coverage of policy issues that affect Tennesseans with disabilities
  • articles about state and federal disability policy topics

Don't hesitate to let me know any time at emma.shouse@tn.gov or tnddc@tn.gov if you have questions about a particular disability policy issue or have stories you want to share with the Council.

- Emma (Shouse) Garton, Council Policy Director

Disability Policy Corner (Jan 2024)

State policy news, events and feedback opportunities

Federal policy news, events and feedback opportunities

Get to Know a Leader: Robbie Faulkner, Executive Director, The Arc Tennessee

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Today, we're introducing you to the new Executive Director with The Arc Tennessee.

Tell us a bit about your career background and your current role. 
Before coming to The Arc TN, I spent 31 years in public education, where I served as an:

  • English teacher,
  • district-level literacy coordinator,
  • middle school principal, and
  • Director of Secondary Education.

In my role as Director of Secondary Education, my top priority was ensuring every student was ready for whatever path they chose after high school. For students with disabilities, this meant creating individualized transition plans and teaching students how to self-advocate.  Our goal was to equip them with the skills and confidence to enter the workforce.
 
Because of the work I did in the educational arena, the fact that I have an adult son with autism, and the wonderful things I have witnessed serving on the board of directors for Developmental Services of Dickson County, I knew I wanted to work more directly with the IDD (intellectual/developmental disabilities) community. I am thankful to have been named the Executive Director of The Arc TN, which will allow me to do just that. What I love most about this organization is our mission to equip individuals with IDD with the knowledge, skills, and tools they need to be part of the community in which they live.
 
What is one thing you’re working on right now that you are excited about? 
It is difficult to choose, but I would have to say our Bridge to Success conference, which will take place April 5 at the Franklin Cool Springs Marriott. The Arc TN is known for its two-day Mega Conference, and there has been some disappointment that is not happening. However, everything that Mega embraced and represented is still a part of Bridge to Success. This one-day conference includes all the groups who are vital to the success of individuals with disabilities: 

  • self-advocates,
  • advocates,
  • educators, and
  • families.

Check out our conference website at http://bridgetosuccesstn.org/
 
What is one of the biggest lessons you have learned from working with TN’s disability community? 
This community is focused and busy. For anyone outside of this community, my answer might seem flippant, but for those within, you are nodding your heads. Grass does not grow under anyone’s feet. There is a sense of urgency in every conversation and meeting. I am loving every minute of it.
 
If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like? 
Because I am new to my role, time is a barrier. There are so many new people to meet, foundational knowledge to learn, and connections to be made. There is not enough time in the day. I have been told again and again to give myself grace, so that is what I am doing.
 
What are some activities you enjoy doing in your free time? 
I love to read and am particularly enjoying audiobooks right now. I also love traveling and watching football, especially college.
 
When should members of the disability community reach out to you or your team directly? 
The Arc TN has several programs that help empower people with IDD and their families. Below is some information about each of our programs and how to get in touch with those leading each. I would also encourage them to check out our website:  https://www.thearctn.org/

  • The TN Center for Decision-Making Support (CDMS) is a virtual resource center that provides Tennessee specific information about decision-making support options such as Conservatorship, Powers of Attorney, Supported Decision-Making, Special needs trusts, Able Savings Accts, HealthCare Directives, etc. Visit the Center website at https://www.tndecisionmaking.org/.  They may also contact the Center staff at (615) 248-5878, ext. 322 or via email at ds@thearctn.org.
  • Advocacy: If a person with intellectual and/or developmental disabilities (IDD) or their family feels their rights are being violated, they have quality of life concerns, are experiencing issues with getting needed services, or need assistance understanding and navigating various government systems. They can submit a referral through The Arc TN website or by using https://tinyurl.com/ArcTNReferral 
  • The Personal Assistant Supports and Services (PASS) program is a statewide program that allows participants to self-direct their care. To be eligible, individuals must have applied for other waiver programs and received notice that they are not eligible. To find out more or to request an application form, please reach out to Ashley Coulter at acoulter@thearctn.org.
  • People First Tennessee is a statewide disability rights organization with the goal of empowering people with disabilities to have voices in addressing issues of equality that affect them. We are growing and rebuilding local chapters—reach out to join us or to get help to start your own local group. Email peoplefirst@thearctn.org or call  615-248-5878 ext. 023
  • Family Engagement: Whenever a family needs support navigating special education, they should reach out to us on our website familyengagementtn.com or email specialeducation@thearctn.org.

Transition TN joins school help network "TN-TAN"

Transition TN is an amazing FREE resource in our state to help students with disabilities transition from high school to employment and adulthood. They recently became part of a statewide network through the TN Department of Education that helps schools better serve students with disabilities. Transition TN's Erin Maves shares more below about how they can help your school!
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The TN Technical Assistance Network provides a way for families to connect with each of seven TN-TAN partners. Parents, like professionals, can submit referral requests to ask for resources and supports for their child. Transition Tennessee supports the area of secondary transition. Each of the remaining six TN-TAN partners support different focus areas. These include: 

  • intensive behaviors
  • autism
  • pre-school and early childhood
  • family engagement
  • assistive technology, and
  • tiered support (for academic and behavioral supports). 

Families can contact any TN-TAN partner by clicking the “Request Assistance” button on the front page of the TN-TAN website. Transition-related questions or requests for resources will be sent to us. A member of the Transition Tennessee team will reach out to the family right away. Families can also reach out to us directly at info@transitiontn.org.
  
Transition Tennessee has resources for transition professionals. Many of those resources are also helpful for families. For example, our website has video lessons that can help families learn more about:

  • transition assessments,
  • transition-focused individualized education programs (IEPs), 
  • community living,
  • employment,
  • postsecondary education, 
  • and self-determination skills.

Our website also has Family Tip Sheets that explain several transition topics in a practical way. Tip sheets cover topics such as: 

  • working and SSI
  • an overview of Vocational Rehabilitation and Pre-Employment Transition Services
  • diploma options in TN
  • Employment and Community First Choices
  • ABLE accounts
  • decision-making supports
  • and assistive technology for after graduation.

These tip sheets discuss complex topics in a concise way, including who to call for more information, and suggested questions to ask.

Any of these resources are available on our website. Families just need to register for a free account to access them. 

Finally, we host several virtual events every month. For example, we host short monthly webcasts on topics of interest to both families and educators. You can register for webcasts at: https://transitiontn.org/webcasts/. 
 
With the start of our new contract with the TN Department of Education, we plan to create new family-facing resources. You can reach out to us with questions or requests for specific content! We are here to serve all Tennesseans who are invested in supporting students to reach their post-school goals.

Council member Kezia Cox featured at national Arc conference

We love celebrating how our Governor-appointed Council members act as leaders in their communities and beyond. East TN development district representative Kezia Cox is a young woman with disabilities who receives supports through the Employment and Community First CHOICES program. She also works as a Peer Support Specialist for one of the managed care organizations that run the ECF CHOICES program, Wellpoint (known as Amerigroup until recently). This means that she supports other Tennesseans with disabilities who get Medicaid disability services to help them lead good lives. Kezia shares below about recently speaking at the national Arc US Convention about her role with the company.

"My Member Advocate and coworker Judy Pate put in a proposal for us to present on my current position as a Peer Support Specialist with Wellpoint. The conference was during the first week of November 2023. I talked about my roles and responsibilities as a Peer Support Specialist. I spoke on what's working and what's not working in the position. The best part of the trip was how many people wanted to know more about the position and how they could incorporate it into their state. Ultimately, since the presentation. I have become even more confident in my abilities to present to large groups of people."

Congrats on sharing your story in this important way, Kezia! 

Dec. 2023

Click here to see the orignal campaign.

From the Council's Chief Strategy Officer

Dear readers,

This month's edition will be short and sweet. The holiday season is in full swing, and many of us are spending time with family and friends, making memories to carry us into the new year. 

We know this can also be a hard time of year for those grieving a loss or struggling to find your path. Please know you are not alone.

  • TN Disability Pathfinder can help you find disability-related supports or services in your area. 
  • LifeCourse Tools can help you think about changes you want and resources you can access for a good life. (Tip: These tools can help with hard conversations when others in your life don't share your vision for the future.) 
  • Our staff are here to help with persistent barriers to services. We understand that solutions are not always easy. 
  • If you need immediate help, please call the 988 Suicide and Crisis Lifeline. 

There is hope in community as we share our human struggles and glimmers of joy. 

Happy holidays, friends. We'll see you in 2024!

Jolene Sharp
Chief Strategy Officer

Disability Policy Corner (Dec. 2023)

 Special news collection 

Articles about the TN legislative workgroup considering rejecting federal education funding that met last month. This would have a significant impact on students with disabilities in TN.

TN news and events

  • *Council priority topic* - Vanderbilt TRIAD's behavior team is seeking caregiver input on key school behavior-related topics. They will use this information to design new resources to share with caregivers. Take the brief survey: Caregiver Feedback (vanderbilt.edu)
  • Every year, Disability Rights Tennessee (DRT) seeks input from the Tennessee disability community and its allies about services they provide. Share your input about their areas of work.

Federal news and events

November 2023

Click here to see original email campaign with photos.

From the Council's Chief Strategy Officer

Dear readers,

This week, I attended the third summit for our Leadership Academy of Excellence in Disability Services (LAEDS), offered in partnership with the Dept. of Human Resources. LAEDS is a training for state leaders who work in programs that serve people with disabilities (and isn't that all of them?!). 

This session, LAEDS participants practiced creative thinking skills and heard about innovation happening right now in state government related to people with disabilities. They heard from our Executive Director, Lauren Pearcy, about a framework for behavioral health across all services. I talked to participants about plain language - what it is, why it matters, and how to use it. 

Easy to understand information is a basic need for any of us. For people with disabilities, it's an essential first step to getting much needed services and supports. That's why we are excited to share below the news about TennCare's updated websites for key disability-related programs. It's also why we want to introduce you to the outreach team at Disability Rights Tennessee.

Clear information is a pathway to knowledge and empowerment. We hope this newsletter is one place you find it! We'd love to hear your feedback - the good, the bad, and everything in between. Contact us any time at TNDDC@tn.gov. Happy Thanksgiving next week to you and your loved ones! We'll see you back here when the holiday season is in full swing. 

Jolene Sharp
Chief Strategy Officer

P.S. November is Family Caregiver Month! Don't miss information below about a new resource for supporting family caregivers. Thank you to each of you who support a loved one with a disability - your love, passion, and advocacy are a driving force for positive change in our state. 

Get to Know These Leaders: Disability Rights Tennessee's Outreach Team

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Today, we're introducing you to Dalmys Sanchez, Jessica Klacik, and Lee Sherwood. Together, they form the communications team at Disability Rights Tennessee (DRT). DRT is our state's disability protection and advocacy organization, which is the legal arm of Tennessee's Developmental Disabilities Network. (Our Council is the policy change arm of the DD Network.)  

First, meet Dalmys Sanchez, Diversity Outreach Coordinator. 

Tell us a bit about your career background and your current role.
Dalmys: I was born and raised in the Dominican Republic and my first language is Spanish. I first came to the United States on a scholarship to study special education after having graduated as an elementary school teacher in my country.

Although my educational background was in education and special education, I came to work with the disability community because of a personal experience with my first child. When he was three years old, he was expelled from a private pre-K program, allegedly because of his hyperactivity. I refused to leave the school without a referral to some program that would help my child behave better, so he could stay in school. I was encouraged to call the Regional Intervention Program (RIP). We went to RIP so they could fix our child, only to realize that the one that needed fixing was us (and the school staff who couldn’t deal with an active and curious 3-year-old)!

RIP was so impactful for my family that I developed a burning desire to stay in that world of kindness and respect for children. I let the staff know that I was interested in working in the program. A parent-case manager position opened almost immediately! That’s how my career in early intervention started. It continued for over a decade through my work in several agencies, including RIP and Tennessee’s Early Intervention System (TEIS).

I wanted to learn more about the issues that affect people with disabilities in the different stages of their lives, so I moved into the disability advocacy field by joining Disability Rights Tennessee (DRT). In the 7 years that I have been in the agency, I have filled different roles and grown as a disability advocate. I've gone from intake advocate to leading the access team to outreaching to the Spanish-speaking community, and currently coordinating the agency’s outreach efforts as the Outreach & Diversity Coordinator.

What is one thing you’re working on right now that you are excited about?
I am excited about connecting with community partners in the different regions of the state to collaborate outreach efforts in communities that are traditionally underserved, such as rural counties, sensory disability communities, the Spanish-speaking and other immigrant and refugee communities in the state.

What is one of the biggest lessons you have learned from working with TN’s disability community?
I have learned that if people of a particular community don’t reach out to agencies and organizations, it is not for lack of need, it is rather for lack of information. People don’t know what they don’t know, which is why outreach and education are such an important part of the advocacy work that we do.

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
In a magical sense, I would make it so everyone understands each other’s language to be able to communicate effectively and make meaningful connections. This magic can happen when organizations and businesses employ people of diverse cultural and linguistic backgrounds and provide interpreters when needed.

What are some activities you enjoy doing in your free time?
I enjoy dancing, walking, watching my children play basketball, reading literature, and writing.

When should members of the disability community reach out to you or your team directly? 
When people want to learn about disability rights or want other groups to get education on the topic, they can contact me to request education or to request our participation in resource and educational events. They can write to GetHelp@DisabilityRightsTN.Org or call 800-342-1660.

Meet Jessica Klacik, Communication Coordinator for Disability Rights Tennessee.

Tell us a bit about your career background and your current role.
Jessica: I am actually a recent graduate, having graduated from college at Purdue University in August of 2022. During my time there, I majored in Public Relations and Strategic Communications with certificates in Public Policy and Environmental and Sustainability Studies.

I had a few internships and job experiences while in college, including an internship with Boiler Communication, which was Purdue’s student-run agency, and selling bridal gowns on the weekends! I was led to a job at Disability Rights Tennessee by life experience. My family took in a cousin of mine who has disabilities when I was 18, and I saw the way she was failed by the systems and society in general. It was at this time I became an advocate for individuals with disabilities. My experience being a caregiver for her and my background in communications led me to this role as a Communications Coordinator. I plan and execute:social media plans,blog plans,internal and external communications,and website maintenance,as well as all branding needs!

What is one thing you’re working on right now that you are excited about?
I just worked in collaboration with our Voting Access team to create a series of videos to be used in poll training across the state. These videos outlined accessibility, effective communication, accommodations, and more. I was able to work with many members of the DRT team to make these videos a reality, from planning to distribution. I was also featured in the videos as a poll worker, making it my debut role on video!

What is one of the biggest lessons you have learned from working with TN’s disability community?
I would say being more involved with the disability community has shown me how many barriers are encountered in everyday life that can be easily corrected or adjusted to be accessible. Examples of this in my work are: utilizing alternative text, or text that describes an image for screen readers,using heavy contrast in graphic designs for easily readable text,or ensuring videos have captions. I will also say, I have learned that accessibility is changing every day, so it is important to keep a student mindset and to give yourself grace!

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
I would say I would love digital accessibility features to be easier to use and used more often! With the communication channels I manage being primarily digital, I wish I was able to reach underserved communities more easily and effectively. Some features like automated and accurate captioning for videos or easy and accurate translation would make my job more streamlined and remove barriers for people online far and wide.

What are some activities you enjoy doing in your free time?
In my free time, I love spending time with friends or my cats, exploring Nashville, or crafting! I am from a small town up by Chicago and only moved here about a year-and-a-half ago, so I feel like I still have so much in the area to see and people to meet! I also love live music, so I really enjoy going to writers' rounds and finding new artists to listen to.

Meet Lee Sherwood, Director of Community Relations and Development for Disability Rights Tennessee.

Tell us a bit about your career background and your current role.
Lee: Although not originally from Nashville, I made Nashville my home at the age of 15, when my family moved from Galveston, TX. I have moved away from Nashville a few times to pursue my education elsewhere, but I have always found my way back.

I earned my bachelor’s degree in history from Sewanee: The University of the South and went on to work as the Manager of Development and Outreach for a disability service provider here in Nashville. In 2021, I eagerly combined my passion for learning and my love for travel when I relocated to Venice, Italy, to pursue a master's degree in human rights and democratization. From there, I was lucky enough to spend 6 months in Ljubljana, Slovenia, writing my thesis on humanitarian intervention in Haiti in the late 1990s. 

Today, I proudly serve as the Director of Community Relations and Development at Disability Rights Tennessee. Getting information out into the community, sharing current projects that DRT is working on, coordinating and attending community events/training, and raising money to expand the services we offer are all things that come through the Community Relations department. 

What is one thing you’re working on right now that you are excited about?
It is so hard to pick just one thing that DRT is working on. With 2024 being a big election year, I am really excited to get voting information out to the community. We just finalized some great poll worker training videos that we will be releasing very soon!

What is one of the biggest lessons you have learned from working with TN’s disability community?
Having worked in two different agencies with two different structures, the interconnectivity of the entire TN disability community was apparent from the very beginning. It is always a joy to walk into meetings, trainings, etc. and always see a familiar face from our community. It takes a village of advocates to make positive change, and I am proud to be a part of it!

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
As a communicator, especially in the digital times we live in, I wish that all the information we post goes directly to the feed, inbox, or notification center of everyone who needs it. Accessibility issues come in many different forms, and I wish I could see all businesses, social media users, governments, and everyone in-between make their content as accessible as possible!

What are some activities you enjoy doing in your free time?
I am lucky enough to live near both Radnor Lake and Percy Warner Park, so I love to go on walks and hikes there, especially right now with the leaves changing colors! I also love to try new restaurants with family and friends, read, and travel as much as I can.

When should members of the disability community reach out to you or your team directly? 
Disability Rights Tennessee has a Get Help line that is always open. You can reach us by email at GetHelp@DisabilityRightsTN.org, via voice call at 1.800.342.1660, or on our website at www.DisabilityRightsTN.org.

For Family Caregivers Month: A new website to help communities support caregivers

SupportCaregiving.org is a new, national site that shares specific actions to support family caregivers.We all can work together to lighten the load for family caregivers. Explore the site for strategies that you can take to better support family caregivers and share this resource widely with your networks. 

The site includes resource guides with concrete actions for:

  • Family caregivers
  • Area Agencies on Aging 
  • Employers
  • Funders
  • Managed Care Plans
  • State officials

The site also features a short, animated video overview of the National Strategy to Support Family Caregivers. The site was launched by a coalition of groups, including NASHP, the National Alliance for Caregiving, and The John A. Hartford Foundation.

TennCare launches updated websites for programs serving people with disabilities

TennCare has launched updated websites for:

  • Long Term Services and Supports (LTSS)
  • Employment and Community First (ECF) CHOICES - offers services for people of all ages who have an intellectual or developmental disability (I/DD) 

Long Term Services and Supports partnered with members of our Council staff, along with other external partners, to provide feedback on the website.

Thomas Wood, LTSS Director of Communication for TennCare, shared more background on the project. 

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What were the goals for the website transformation project?
One of the goals of the website transformation project was to make the web pages more user friendly. In addition, we wanted to create a new webpage that housed many of the LTSS documents in one place. Overall, our goal was to streamline the website so that anyone could easily find what they were looking for.
 
How did you gather feedback?
We gathered feedback through focus groups, brainstorming sessions, and testing out different webpages. We met with external groups, including:the MCOs (managed care organizations that contract with TennCare to provide services)DIDD (TN Dept. of Intellectual and Developmental Disabilities) AAADs (Area Agencies on Aging and Disability)PACE (Program of All-Inclusive Care for the Elderly) In the meetings, we gathered feedback on ways to improve the site. We also met with subject matter experts throughout LTSS. In these sessions, we thought of ways to include the external feedback into the new webpages. Through this work, we were able to include many of the recommendations that external partners made.

What do you hope people will experience on the updated sites?
We hope that people can more easily navigate throughout the LTSS website and find what they are looking for. The program pages have been updated to make them more efficient and easier to access. We also hope that the new LTSS Documents page will help people find the documents they need in a more efficient manner.

For questions about TennCare's website transformation project, contact Thomas at thomas.wood@tn.gov. 

Have you opened an ABLE TN account?


By Cassidy Denton, Tennessee Department of Treasury

More than 3,000 Tennesseans have found ABLE TN to be a great solution to help save for their future. ABLE TN account holders have saved more than $43 million in 3,291 accounts, as of June 30, 2023. Would ABLE TN be a good option for you?
 
The Tennessee Department of Treasury is proud to administer ABLE TN, one of the nation’s first Achieving a Better Life Experience programs! ABLE TN is a savings program that provides Tennesseans with disabilities the opportunity to put aside money to pay for qualified expenses. With an ABLE TN account, participants can save and invest for the future with tax-free earnings. They can conveniently manage their account online.
 
ABLE TN provides individuals with disabilities opportunities to save and invest to maintain health, independence, and quality of life. ABLE accounts can be opened in the name of the person with a disability, as long as the disability was diagnosed before their 26th birthday. While the named individual is the account owner, there are ways others can help maintain the account on their behalf. ABLE accounts can be set up and managed by a legal representative.
 
Anyone can make contributions to an ABLE TN account in a variety of ways, including:

  • checks,
  • electronic transfers (EFTs), and
  • payroll deductions. 

Participants can even invite their friends and family to contribute directly to their ABLE TN account through Ugift, an easy, free online service. 

The 2023 annual contribution limit for an ABLE account is $17,000. The contribution limit increases to $18,000 starting in 2024. In some situations, working ABLE account owners can save more. Over time, individuals may accumulate up to $100,000 in an ABLE account without impacting their eligibility for certain federal means-tested benefits. An eligible account owner can only have one ABLE account.
 
The Tennessee Department of Treasury monitors each investment option offered by ABLE TN to ensure the highest quality investment options are available to account owners. These are the same professionals who invest funds for public employees and teachers. Interest earned on ABLE TN account funds is tax-free if used to cover qualified disability expenses.
 
When you have a qualified disability expense, you can make a tax-free withdrawal from the ABLE TN account to pay for it. Qualified disability expenses are ones related to the account owner’s disability. Examples include:

  • education,
  • housing,assistive technology,
  • and more. 

To learn if an ABLE TN account is right for you and your family, go to ABLETN.gov to learn more.

Disability Policy Corner (Nov. 2023)

Special news collection 
Articles about the TN legislative workgroup considering rejecting federal education funding that has been meeting this month. This would have a significant impact on students with disabilities in TN.

TN news and events

Federal news and events

October 2023

Click here to see original email campaign with photos.

From the Council's Chief Strategy Officer

Dear readers,

Happy National Disability Employment Awareness Month!

October is a great time to celebrate how far Tennessee has come in supporting real jobs for real pay for people with disabilities. (Know an employer who is doing a great job at this? You can nominate businesses for TN’s Inclusive Employer Award!)

This is also a great time to dig into the work yet to be done. Tennessee’s Employment First Task Force is setting a new goal to further close the gap in employment between people with and without disabilities. Stay tuned for more in the months ahead!

But let’s get real: why is any of this important?

My daughter, Lina, is 11 now. As many of you know, she has Down syndrome. When we ask her what she wants to do when she grows up, her answer is always, “I want to be a hairdresser.” I am keenly aware that those days will be here long before I’m ready. (She's pictured at left telling us her goals at a recent IEP meeting - see link to original email above.)

Today, we work hard for Lina to get a meaningful education that will set her up for success.

But sometimes, I wonder: Will the world she enters as an adult be ready to see her skills and gifts? Will the people making hiring decisions give her a chance? Will those who do give her that chance know how to support her so she can be successful?  

If you’re reading this newsletter, I have a feeling you’re a lot like me. We’re here because we long for a world that sees and welcomes every person’s unique value. We long for a world where every person can go after their goals, get help when and how they need it, learn from affordable mistakes, find connection and belonging, and live a full life of purpose.

Meaningful work for real wages is a big piece of that future world we’re working toward. Employment opens so many doors. It’s a part of adulthood every person deserves the chance to pursue.

I am so proud to work for a state that has been committed to Employment First for 10 years. We’ve seen huge progress in employment for people with disabilities as a result. That work was possible because we did it together. 

The work ahead is also possible if we do it together – across state agencies and private organizations, across communities, across individuals of every background and experience.  

Join us!

  • Get involved in National Disability Employment Awareness Month with Tennessee’s “Hire My Strengths” campaign. (Our partners at the Dept. of Intellectual and Developmental Disabilities have made it easy!)
  • Talk to employers and businesses in your community about hiring people with disabilities. Tennessee offers lots of support to help employers through the process. The Dept. of Human Services’ Vocational Rehabilitation Business Services is a great place to start. (Get to know Director Ryan Jolley below!) 
  • Talk to people with disabilities and their families about Tennessee’s employment services. Many people don’t know about programs in Tennessee (like Vocational Rehabilitation – which includes Transition Services for students – and Employment and Community First CHOICES) that can help teens and adults with disabilities learn job skills, explore their career goals, and find a job they love. (Facing barriers with your services? Contact us – we may be able to help!)

Thank you for being a part of this work. This month and every month, we’re proud to work alongside you for that better world we all want to see.

Jolene Sharp
Chief Strategy Officer

P.S. For stories about what a good life – including supported employment – can look like for people with intellectual and developmental disabilities, watch our short (2-3 minute) videos:

 

5th class of TN Leadership Academy for Excellence in Disability Services (LAEDS) begins

LAEDS is a year-long leadership development program for state employees whose work has a direct impact on Tennesseans with disabilities and their families. The goal is to ensure that these leaders in state government work from a shared set of values, goals, and principles. The academy builds relationships and collaboration among state agency partners.

Participants learn about: 

Our 5th class of this program, which we lead in partnership with the TN Department of Human Resources, kicked off in September. We were excited to welcome participants from the following agencies this year:

  • Commission on Aging & Disability (TCAD)
  • Department of Children's Services (DCS)
  • Department of Correction (TDOC)
  • Department of Health
  • Department of Human Services (DHS)
  • Department of Intellectual and Developmental Disabilities (DIDD)
  • Department of Transportation (TDOT)
  • Office of the Governor
  • TennCare

We look forward to getting to know this year's participants as they learn and grow together! 

Get to Know a Leader: Ryan Jolley, TN Dept. of Human Services, Division of Vocational Rehabilitation

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Ryan Jolley, the Director of Business Services at the TN Department of Human Services' Division of Rehabilitation Services Vocational Rehabilitation program. Learn more about the Business Services unit here.

Tell us a bit about your career background and your current role.

First, I like for others in the disability community to know that I’ve been legally blind since age 10 due to Stargardts disease, received support services throughout my public school and college education experiences (B.A. and MBA), and have been a customer receiving Vocational Rehabilitation (VR) services. I’ve been part of the disability community nearly ¾ of my life.

Currently, I have the privilege of serving as the Director of Business Services for the Vocational Rehabilitation program at the TN Department of Human Services. In this role, I serve a team of consultants who connect businesses with talent coming through the VR program. Prior to this role, I worked at Trevecca University in Nashville where I lead the creation of a proprietary employment program for students. The program focused on developing in-demand skills while bridging the financial gap of paying for college through work over debt. While at Trevecca, I worked with local employers to supply students with off-campus employment opportunities and developing community partnerships.

Before working in employment services, I led in the startup of a coffee company, and through the company we partnered with Metro Nashville Public Schools to provide work-based learning opportunities for high school students with disabilities.

What is one thing you’re working on right now that you are excited about?

There are two things that really excite me:

  • First, the increased delivery of disability awareness training for employers across the state. In 2020, we invested in having our team certified to deliver Windmills disability awareness trainings. Since then, we’ve invited partner agencies to join us in investing in their teams to become certified trainers as well. We have worked together to ensure employers have access to the resources available to them. I’m excited to see how our team at VR and the TN Department of Human Resources are working together to offer Windmills training opportunities to state agency staff across the enterprise.
  • Second, I’m excited about efforts that are being made to invest in entrepreneurs with disabilities. At VR, we just kicked off our efforts to train all VR staff on the use of a VR Self-Employment Guide, an online tool that enables entrepreneurs with disabilities be supported through formal and informal supports in a consistent and proven way. This year, we will be continuing our efforts to train VR staff using the VRselfemploymentguide.org tool. My goal is to see entrepreneurs with disabilities receiving impactful supports through VR and beyond.

What is one of the biggest lessons you have learned from working with TN’s disability community?

I think the biggest lesson I’ve learned since joining the VR team a little over five years ago is this: The disability community, and, more specifically, the disability employment community, is complex. 

In the beginning, I didn’t recognize the purpose behind the multitude of angles and perspectives. I’ve come to understand this lesson: The disability employment ecosystem is interdependent on one another to perform each programs’ role with high levels of effectiveness in order for the entirety of the system to serve Tennesseans with disabilities well. 

VR needs the DD Council, the DD Council needs the Department of Labor and Workforce Development,  and the Department of Labor needs the Department of Mental Health and Substance Abuse, and so on… The multitude of programs make the system work as a whole. Without each playing its role, the system begins to break and not serve those it’s designed to serve.

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?

My magic wand would provide opportunity for partner agencies to share teams for prolonged periods of time in order to intimately understand the inner workings of one another’s program and agencies. My magic wand would enable me to send two of my Business Employment Consultants to the Department of Labor and Workforce Development to job shadow for 2-4 weeks. It would also allow for me to welcome partners from TennCare to come spend 2-4 weeks on the job with VR counselors and staff.  So, temporary embedding of partners across program lines. 

Or, of course, I’d wave the magic wand of transportation solutions for people with disabilities - one wave of the wand and every person who experiences transportation barriers is equipped with the resources that enables them to solve the transportation puzzle in a way that fits best for them.

What are some activities you enjoy doing in your free time?

In my free time, I enjoy: time with my wife and kids in the outdoors, fishing, hunting (yes, I’m legally blind and I hunt - now, you know one 😊), tending to the animals on our little farm (sheep, goats, rabbits, pigs, etc.), hiking, studying history and searching for artifacts and relics, picking my guitar or banjo, and embarrassing my wife and kids in public.

When should members of the disability community reach out to you or your team directly?

If members of the disability community know an employer that could benefit from having supports to recruit and retain more talent with disabilities to their workforce, email me at ryan.jolley@tn.gov.

WorkABLE TN helps Tennesseans manage disability benefits and working

One of the main worries that people with disabilities and their families can often have about starting to work is how their benefits will be impacted.

"Benefits" may include a person's Medicaid (TennCare in TN), which may include not only their healthcare but their long-term disability supports and services, and Social Security financial help like SSI and/or SSDI.

This can be a complex and confusing question to try to answer on your own. But good news: help is available! WorkABLE TN (formerly known as Benefits to Work) at the TN Disability Coalition helps workers with disabilities and their supporters figure out the best way to maximize income earned from working and the benefits that they rely on.

For more information, visit WorkABLE's website or contact Alice L. Owens, J.D., Program Director, at (615) 383-9442 or 1 (888) 639-7811.

Self-Direction: PASS Puts You in Charge

By Ashley Coulter, Director of Communications and Public Awareness at The Arc Tennessee
 
“PASS has helped me have a better quality of life. [The program] helped me be able to go out in the community and not be stuck at home all the time.” These are words that a current PASS program participant recently shared with me.
 
PASS, or “Personal Assistant Supports and Services,” is a statewide program funded through the TN Department of Intellectual and Developmental Disabilities (DIDD) and managed by The Arc Tennessee. Through this program, participants self-direct their care. Self-direction means the person with the disability does the recruiting, hiring, training, and supervising of their support employee. Participants are given an annual budget, and with those dollars, they can set an hourly pay rate and create a schedule for their support staff that works for them. In the PASS program, most people can self-direct their own services, while some have someone else direct for them.
 
To be eligible to participate in PASS, you must have applied for other Medicaid “waiver” programs for people with disabilities and received notice that you are not eligible. These include the Employment and Community First CHOICES, CHOICES, and Katie Beckett programs (depending on the age of the applicant). This means that PASS is a “program of last resort.” An individual may participate in both the Family Support program and PASS, but funds from the two programs may not be used for the same purpose.
 
The PASS program currently has 6 individuals enrolled. The current participants are spread across the state.
 
Here are some of the ways that our current participants with disabilities are using help from the PASS program:

  • One man lives in an apartment with his wife. He has one personal assistant that comes and helps with cleaning and other things around their apartment that are difficult for him to do.
  • One man lives independently and has three different personal assistants available to help him get ready for the day. Having more than one assistant available means he may have more flexibility in scheduling shifts that work for his schedule.
  • One individual is in elementary school. His parent helps direct his care on an as-needed schedule. They have up to three assistants (depending on the assistants’ college schedules) that are able to come and help the young man go out in the community, take part in family activities, and allow time for the parent to attend events for her other child.

Each participant is given a budget to last a full 12 months. As the end of the year gets closer, participants can use money from their budgets to provide durable medical equipment that insurance may not cover. This has included cochlear implant batteries, catheters, or special water bottles that allow an individual to get sips of water on their own.
 
At the start of a new budget year cycle, there may be a change in how much money is available for each person, based on program funding and the person’s needs. There are limited funds available through the PASS grant, but we hope to continue to enroll new participants as the budget allows. If you or someone you know are interested in applying for the PASS program, or if you have questions, please email acoulter@thearctn.org.
--
Ashley is the Director of Communications and Public Awareness at The Arc Tennessee, where she also manages and updates the website and executes timelines for upcoming events. She is a graduate of our TN Partners in Policymaking® program and has more than nine years of experience working with the disability community. Ashley has a younger brother with a disability, which inspired her to help start Tennessee’s Adult Brothers and Sisters (TABS), a statewide organization for adults who have a sibling with a disability.

Disability Policy Corner (Oct. 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities.

*Special news collection* - Articles about the new TN legislative workgroup considering rejecting federal education funding that will meet in Nov. 2023. This would have a significant impact on students with disabilities in TN.

TN news and events

Federal news and events

Sept. 2023

Click here to see original email campaign with photos.

From the Council's Chief Strategy Officer

Dear readers,

Happy fall! We’re a couple days short of the official season change, but cooler temperatures are in the air and touches of color are appearing on maple leaves.
 
I am lucky to be spending this week in beautiful Knoxville at a state government leadership training. I’ve enjoyed sunrise runs on Neyland Greenway and dinners at some fantastic local restaurants. More importantly, I am soaking up knowledge and connecting with fellow leaders across state government. It gives me hope to meet passionate colleagues doing great work in so many different areas. That work often happens outside the spotlight, but it matters a great deal to the lives of real Tennesseans. I am excited to grow those cross-agency connections. I can’t wait to apply what I’m learning to our work here at the Council on Developmental Disabilities.

If you’d like to be a more direct part of that work, don’t miss our open job listing below. We are accepting applications for a few more days – through Sunday, September 24. This role will primarily support our day-to-day communications activities but will also have project management and other support responsibilities across work areas. Please share this listing with anyone in your network who might be a great fit.
 
We also have TWO new videos to share with you!

  • The first is a great way to explain and share our healthy behavior checklist.
  • The second celebrates 30 years of Partners in Policymaking through the stories of graduates making a difference in their families and communities.

Enjoy and share these videos – and all the great content below – with your networks! You are ambassadors who help us get important information and resources to more members of Tennessee’s disability community.

Thanks for all the different ways you are a part of our work!

Jolene Sharp
Chief Strategy Officer

Watch and share our 2 new videos: New Behavior Checklist, Celebrating 30 years of Partners in Policymaking in TN

We're Hiring: Project Coordinator

The Council on Developmental Disabilities is seeking to fill the position of Project Coordinator. This is a full time, executive service position that will support the agency’s state plan goals.  The position reports to the Chief Strategy Officer.

Position: Executive Admin Assistant I Salary Grade M

Working Title: Project Coordinator

Deadline: Apply by Sunday, Sept. 24, 2023

Qualifications: Bachelor’s degree or equivalent experience.  Lived disability experience a plus. Passion for the values of disability inclusion, independence, and self-determination required.

Location: The office location for this position is 500 James Robertson Pkwy, Nashville. However, this position is classified as Alternative Workspace Solutions (AWS) Work From Home. This means the person can work remotely the majority of the time but must attend in-person meetings and events as business needs require.
 
Job Responsibilities:

  • Manage recurring communications projects, including:
    • Social media research, planning, and execution
    • Formatting of existing newsletter content for distribution via digital marketing platform
    • Website content maintenance
    • Print magazine content development and production
  • Provide project support to the Chief Strategy Officer in three key work areas:
    • Expanding outreach to underserved communities
    • Increasing healthcare access for marginalized Tennesseans with disabilities
    • Promoting plain language as a best practice
  • Provide on-site staff support to Council committee meetings and other Council programs and trainings
  • Represent the Council at disability events and on state workgroups as assigned based on interest areas
  • Assist with data tracking, reporting, and administrative tasks to support state plan goal directors as assigned

Core Competencies:

  • Organizing
  • Planning
  • Priority Setting
  • Process Oriented
  • Creativity

Skills:

  • Project management – independently and proactively tracking task timelines, next steps, and deadlines
  • Strong written communication
  • Quick learning
  • Basic familiarity with principles of graphic design and print publication
  • Collaborative mindset

Strong candidates will have experience with the following platforms or the ability to independently learn them and quickly become proficient:

  • Mailchimp
  • Asana
  • Microsoft Office/Outlook/Teams
  • Canva
  • Facebook/YouTube/ Instagram/LinkedIn
  • Adobe Acrobat/Adobe Experience Manager (website management)/Adobe Analytics

Apply here.

Get to Know a Leader (Special Technology Edition!): DIDD's 6 Regional Enabling Tech Champions + upcoming tech events, award nominations

Our partners at the TN Department of Intellectual and Developmental Disabilities (DIDD) are hosting their annual FREE Enabling Technology summit on Nov. 8-9 in Murfreesboro, TN.

If you're not familiar with the term "enabling technology", it just means any way that technology can be used to help people be more independent in their homes, communities and workplaces. Enabling technology can include:

  • Apps and smartphone features
  • Tablets, laptops, or computers
  • Smart home tech like stove sensors, medication dispensers, doorbell cameras, touchscreen refrigerators or smart speakers/virtual assistants
  • Assistive technology solutions or devices designed for people with disabilities
  • Remote monitoring supports where people outside someone's home can provide help to the person from another location
  • LOTS of other creative options!

DIDD's Enabling Tech summit is a great way to learn about creative ways that Tennesseans with disabilities are using tech to live better and more independent lives. 

Another great way is to attend the upcoming "Tech for All" online training series for adults with intellectual and developmental disabilities:

If you know of folks using tech in neat ways, you can nominate them for a "Tech Trailblazer" award during the summit - just fill out this form before Sept. 29.

DIDD has 6 "enabling tech champions" stationed across TN who are helping people with disabilities every day learn how tech can help them. Get to know these 6 leaders below and explore the Enabling Tech webpage to learn more!

We sent these 5 questions to all 6 of the regional Enabling Tech Champions - read their answers below!

  • Tell us a bit about your career background.
  • What is one thing you’re working on right now that you are excited about?
  • What is one of the biggest lessons you have learned from working with TN’s disability community?
  • If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
  • What are some activities you enjoy doing in your free time?

Sherrita Addison (West TN)

  • I have been employed with DIDD for five years as the Plans Review Coordinator and now as an Enabling Technology Coordinator. Prior to DIDD, I worked with youth with disabilities as a classroom teacher and as a case manager at a residential youth facility.
  • I am excited about working on a project that will expand the use of Enabling Technology to self-advocates.
  • TN’s disability community is a tight knit community with rich history of sharing information and advocating for one another.
  • If I had a magic wand, I would immediately place an Alexa device in the life of the person desiring Enabling Technology.
  • I enjoy reading, spending time with family & friends, and MJ (my mother’s dog).

Christy Fili (West TN)

  • I have been working in the intellectual and developmental disabilities field for ten years now in everything from a direct support professional to an independent support coordinator. I’ve been with DIDD for about a year now as a Tech Champion assisting people with obtaining technology solutions to improve and maximize their independence.
  • In the West Region, we are planning a Technology Camp in Memphis for 2024 where children and adults with IDD can come explore technology options while also experiencing nature and camp comradery.
  • One thing I've learned from working in TN is that a good life does not have to be a complicated life.
  • A barrier I would love to see removed is better urban planning in our cities. So many people could be using Enabling Technology if they had more accessible and reliable public transportation. We need improved and thoughtfully networked sidewalks and safe street crossing so that folks can move around in and navigate their world independently. Not just in trendy neighbors, but city wide where daily life occurs.
  • I enjoy playing bass and electric guitar in local bands.

Toni Johnson (Middle TN)

  • Prior to joining the Enabling Tech team, I was a part of the Person-Centered Practice Unit with DIDD for 6.5 years and I remain an active Person Centered Thinking trainer. I also worked for several years in many capacities at a provider agency. I thoroughly enjoy working with Enabling Technology and feel that my experience in other capacities has helped me excel in supporting Tennesseans with disabilities by providing them with resources to help them reach their goals and gain the independence they desire with the use of enabling technology solutions.
  • One thing I am working on currently that I am excited about is the Tech For All project. I am excited to be able to be a part of this and offer resources to people to help them learn more about technology in general, internet safety, social media etc.
  • Lesson learned: PATIENCE. I feel like I am a very impatient person by nature, but working in this field has taught me that patience truly is a virtue. Not everything we do in life is a sprint, it’s a marathon and when we think about helping people meet goals and receive adequate services and supports, we must trust the process and be patient!
  • If I could wave a magic wand, I'd get rid of funding caps! I wish everyone had more (or unlimited!) waiver funds to assist with enabling technology!
  • I enjoy running, working out, being outdoors, and reading books. I also love watching my son play baseball and other sports!

Michelle Turner (Middle TN)

  • I started out working for a provider agency as a direct support professional throughout college. In 2017, I came to DIDD and was first introduced to Enabling Technology as a pilot project. I was so thrilled at the idea of using technology to support people to be more independent and was blessed to move into the Enabling Technology Coordinator role for Middle TN in 2021.
  • We are currently planning our upcoming Technology Camp events for Middle and West TN. We held our first camp last year in October, and it was such a cool experience and so much fun! We are very much looking forward to these next camp events!
  • I have learned that while there are some really great resources available throughout the state, sometimes the information does not make it into the hands of the people who need it most. I always try to connect people with resources whenever those situations arise and try to make sure people are well informed on how some of the processes work and know what they can expect.
  • I think the first thing I would do is help people become more educated about all the ways that technology can support people to live their best lives. I think if there was an overall better understanding of what enabling tech is, it would help resolve some of the apprehension and stigma that understandably comes with something new and different.
  • My husband and I are big sports fans and love going to UT Vols games in Knoxville, as well as Preds, Titans, Nashville SC, and STL Cardinals games. We also love to travel to new places and countries as often as we can! We have a rescue mutt named Murray, who we like to take with us any and everywhere we can. 

Regan Kleinendorst (East TN)

  • I previously worked just over 20 years for a local provider agency supporting persons with intellectual and developmental disabilities. Currently, I assist persons with obtaining technology that enables them to maintain or build independence at home, at work and in their community.
  • I am excited about the potential that virtual and augmented reality has for helping people build their daily living or employment-related skill sets. Our Division of Innovation has been working with industry experts to develop Virtual Reality videos in the topics of travel training, employment skills and employment exploration.
  • Through my years working with the intellectual and developmental disabilities community I have learned to never underestimate a person’s potential and desire to live on their terms.
  • If I could remove barriers with a magic wand, I would make it so that everyone recognized the value Enabling Technology can bring to persons with disabilities.
  • Most of my free time is spent with my family and volunteering both as a Cub Scout Den Leader and as a Scoutmaster in my daughter’s Boy Scouts of America troop. I also enjoy reading, music, football, camping and traveling.

Joel Walker (East TN)

  • I started with the department in September 2004 as a case manager for the Self-Determination Waiver. During my DIDD career, I had the chance to assist twice in the transition of people moving from Greene Valley Developmental Center to their own homes in the community. In 2017, I volunteered in the development of the Enabling Technology program and was hired as an Enabling Technology Coordinator in 2019.
  • It’s extremely difficult to narrow it down to one thing I am working on right now that I am excited about because each day I do this job, I am excited.  But if I were to share about one thing, it is a new project we are just getting started on: the Technology for All self-advocate program. This program is not only going to help people with IDD and their families gain knowledge about enabling technology but to also demand a seat at the decision-making table.
  • One of the biggest lessons I have learned from working with the TN disability population is never limit what a person can do, so …
  • … If I could wave a magic wand and remove a barrier, it would be for parents/conservators, provider agencies, and people in general to give people the dignity of risk to live the most independent life they can.  Sadly, some people see the disability first and immediately think a person is incapable of any level of independence.  With Enabling Technology, there is something available for everyone to assist with their independence. 
  • In my spare time, I like to spend time with my wife, Laura, and my dog, Ellie, including traveling.  I am an avid sports fan and especially love watching football.  I also love binge watching on the streaming services.

Disability Policy Corner (Sept. 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities.

This edition of our policy corner is packed with news about federal bills and proposed policy changes that YOU can weigh in on. Let us know if you want more info about any of these or have questions for us: tnddc@tn.gov.

TN news:

Federal news:

Call for Interviews: Kindred Stories of Disability - Mental Health and Youth

The Vanderbilt Kennedy Center, The Arc Tennessee, and Able Voices are in search of Tennesseans to interview about  "Mental Health and Youth" for the next issue of Kindred Stories of Disability. These stories and experiences will be shared with TN legislators and policymakers to educate them about the barriers that children and youth with disabilities who also have mental health conditions face as they seek services. 

They want to interview:

  • parents and caregivers of children and youth with disabilities and mental health conditions, and
  • mental health care professionals and health care providers who serve children and youth with disabilities in their practice. 

If you participate, this includes:

  • A one-hour conversation with a Vanderbilt student over Zoom, with questions shared in advance -- NOTE: Interviewees may choose to remain anonymous
  • Optional photo session to give young photographers with disabilities experience using photography for advocacy
  • Final review of your story, written by the student
  • Stories and photos may be printed and shared with legislators and policymakers during Tennessee Disability Day on the Hill.

Check out the Kindred Stories flyer for full details. Interested participants may volunteer by clicking here. Contact Courtney Taylor with any questions.

Aug. 2023

Click here to see the original email.

From the Council's Chief Public Information Officer

Dear readers,

My note will be short this month, because we have NEW MEMBERS for you to meet! If you follow us on Facebook or LinkedIn, you may have seen some local press about these new Governor appointments. This is a great group of folks, and we can’t wait for you to learn a bit more about them.

Our citizen members are the foundation of our work. They help us know where the gaps and barriers are, so we can work on real solutions for our state’s system of services. In our newest video, which you can watch at this link or embedded below, former member Roddey Coe and current member Martez Williams share their stories of real-world change through their roles on our Council.

And finally, happy new school year for those of you going to school or with school-age kids! My kiddos were thrilled to head into 5th and 8th grades. We have big transitions coming next year. As many of you know, that brings extra layers for our kiddos with disabilities. If students in your life need extra support, check out resources from our partners who do great work in special education:

Happy August!

Jolene Sharp
Chief Public Information Officer

New Council Members: Molly Anderson

Gov. Lee appointed Molly Anderson to represent the Southeast TN development district on the Council on Developmental Disabilities. She is a 2022 graduate of our Partners in Policymaking Leadership Institute.

“I got connected with the Council through my advocacy work,” Anderson said. “I was interested in the Council because it helps bring a systemic change.”

Anderson has a nonverbal disability and uses assistive technology and American Sign Language to communicate. She previously worked for the Arc of Tennessee and currently is the Director of Peer Support for Family Voices, a program of the Tennessee Disability Coalition. She also serves on the Chattanooga Mayor’s Council on Disability.

Senator Becky Massey (R-Knoxville) has worked with Anderson on several issues. “Governor Lee could not have appointed a better person than Molly Anderson to serve on the Council on Developmental Disabilities,” Massey said. “I have known Molly for years and have worked with her on passing legislation and policy to assist Tennesseans with disabilities.

“We first worked to pass a bill to allow American Sign Language as a foreign language credit in Tennessee high schools. Then, due to a bill she helped with, we were able to get policy in place for citizens who are not able to verbally call 911 to be able to text their emergency. Molly is a passionate advocate and will be a great addition to the Council.” 

Anderson is married to Josh Anderson and has a daughter, Lucy, age two. The couple is now expecting their second child. In her free time, Anderson loves to run and kayak. 

New Council Members: Faith Henshaw

Faith Henshaw was appointed by Gov. Lee to represent the Upper Cumberland development district on the Council. 

“When I was 10, my brother dethroned me from being the baby of the family,” Henshaw said. “A week later, we learned he has Down syndrome. From that moment on, I’ve been a part of the disability community.”

“I learned about the Council on Developmental Disabilities when I started participating in Tennessee Adult Brothers and Sisters conferences. Then I graduated from the Council’s Partners in Policymaking® leadership training in 2011. As an appointed member, I am especially interested in expanding disability programs and accessibility in rural communities.”

Henshaw teaches pre-K for Jackson County schools and group fitness classes at the Putnam County YMCA. She is on the local Imagination Library board and is active in children’s and women’s ministries at Jefferson Avenue Church of Christ in Cookeville. Her family includes a sister, three brothers, two close cousins, and seven nieces and nephews she loves to take on small adventures.

Tammy Woolbright is PreK – 8 Supervisor for Jackson County Schools. “Faith Henshaw is a 15-year Jackson County educator. She has a passion for all students, but especially students with developmental disabilities. An exceptional advocate, Ms. Faith is always willing to share her own personal experiences of being a sibling to a brother with developmental disabilities. She is a great resource to families in the district, county, and regional community. We are confident she will bring that same resilience at driving positive change for the developmental disability community to this council.” 

New Council Members: Courtney Johnson

Gov. Lee appointed Courtney Johnson of Johnson City to represent the First TN development district on the Council.

“I learned about the Council on Developmental Disabilities during my time in their Partners in Policymaking® leadership training,” Courtney Johnson said. She graduated from the program in 2021.

"I was interested in the Council because it felt like a place where I could hopefully help more people. Learning more about the systems, sharing feedback from my local community – these are things I look forward to.”

“As an autistic person with multiple disabilities, I have always been involved with the disability community in some capacity,” Johnson said. “It was normalized a lot for me, from me being hard of hearing to my two brothers’ own autism diagnoses. My primary focus is on showing people that disability is not a bad thing. I want people with disabilities and their families to have access to the resources they need – things like augmentative and alternative communication (AAC), accessible housing, and more.”

Johnson runs a website, JustKeepStimming.com, and social media accounts to share resources for autistic people and their families. She is an AAC mentor for the Tennessee Out and About program. She has been the Tennessee Site Coordinator for the Disability Day of Mourning since 2018.

In her free time, Johnson likes to do different crafts, write, play with her cats, and watch science fiction shows with her support staff. She also loves airplanes and airports. Her family includes fiancé Christopher and two cats, Sheridan and Leia.

New Council Members: Debbie Miller

Debbie Miller of Murfreesboro was appointed by Gov. Lee to represent the Mid-Cumberland development district on the Council.

“I learned about the great work the Council is doing through a friend who served as a member,” Debbie Miller said. “I am looking forward to providing my unique perspective from living with a disability every day of my life and also having a child with a disability.”

“I am interested in inclusion and in expanding programs available to adults with disabilities,” Miller said. “I am also passionate about getting kids in the foster care system services. My child was adopted through the State of Tennessee, so this is especially close to my heart.”

Miller lives in Murfreesboro with her husband, Bob, and their son, Eric. Eric has autism and cerebral palsy. Miller herself has proximal femoral focal deficiency, or PFFD, which was the result of a medication her mother took to prevent miscarriage.

Brad Turner is commissioner of Tennessee’s Department of Intellectual and Developmental Disabilities – a separate agency from the Council where Miller will be serving. “I have known Debbie for a long time, both as a friend and as a fierce advocate for people with disabilities,” Turner said. “She’s committed to our community and the vision the Council has established in the name of progress. I know she will bring her passion and leadership to the Council and help create a more inclusive Tennessee for individuals with disabilities.”

New Council Members: Dr. Evelyn Roach

Gov. Lee appointed Dr. Evelyn Roach to represent the First TN development district on the Council.

Dr. Roach is the director of the East Tennessee State University Curriculum Innovation Center.

“To be part of the council you have to be impacted by disability,” said Roach. “I have two children with diagnosed neurodevelopmental disabilities, and they have taught me so much about ability and determination. My child with a learning disability just obtained her bachelor’s degree with honors and has taught me that with the right support and services, anything is possible.”

Roach recently completed certification as a family advocate in the Vanderbilt Consortium LEND (Leadership Education in Neurodevelopment Disabilities) program. This program helps reduce and prevent neurodevelopmental disabilities and related disabilities in children and to increase access to family-centered, community-based and culturally competent interprofessional services.

“Dr. Roach’s appointment to the Tennessee Council on Developmental Disabilities is a testament to her advocacy and knowledge of disabilities,” said Dr. William Flora, associate provost for curriculum at ETSU. “She cares deeply about improving the quality of life for those with disabilities within the region and across the state. She will be a leader in work to enhance policy and expand opportunities in this area.”

(Press release originally created and published by ETSU.)

Disability Policy Corner (Aug. 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities. 

July 2023

Click here to see the original email.

From the Council's Chief Public Information Officer

Dear readers,

Councils on Developmental Disabilities in every U.S. state and territory have been working for 50 years for greater inclusion, independence, and self-determination for people with developmental disabilities. But what does that really mean?

Today, we’re introducing a new video. (View at that link or see the embedded video at the end of this note.)

“What developmental disabilities have in common is the need for lifelong support with activities of daily living… But developmental disabilities is so much more than a definition. It’s about supporting people to live the life they deserve.”  -Lauren Pearcy, Council Executive Director

In less than 2 minutes, you’ll get a glimpse into the developmental disabilities community in Tennessee through members of our Council, who share how they get support to live a good life.

Our website offers more detail about developmental disabilities.

A few highlights:

  • About 2.3% of the U.S. population has a developmental disability.
  • This means about 160,000 Tennesseans have a developmental disability.
  • The impact includes thousands more through family members, friends, and colleagues.
  • About 7% of people with developmental disabilities get paid services for long-term help with daily needs. (In Tennessee, that includes programs like Katie Beckett or Employment and Community First CHOICES.)
  • This means that about 93% of people with developmental disabilities in Tennessee are getting any regular help they have from unpaid supporters, such as parents, grandparents, siblings, spouses, or other friends or family.

The U.S Centers for Disease Control and Prevention (CDC) recently announced that the current rate of developmental disabilities in children is 1 in 6, or about 17%. This tells us that the developmental disabilities community is growing. These children need us to build a system of supports that will be ready to help them transition to adulthood and live good lives in their communities.

This need couldn’t mean more to me personally. Both my children are included in those CDC numbers. My son is about to begin his 8th grade year of school, and my daughter will begin her 5th grade year. Both kids will be making big transitions next year: one to high school, one to middle school. My husband and I will do the hard work of making sure they have access to the environments and supports they need to learn and grow. And we will begin to think further ahead, to the transition from school to adulthood.

Will the world be ready to welcome our kids and recognize all they have to offer? Will they have the chance to pursue their passions, contribute to their communities, and build financial independence? Will they have meaningful relationships that offer vital connection and belonging? All across our state and nation, parents like us are asking these same questions.

Councils on Developmental Disabilities exist to reach ALL people in the developmental disabilities community with information, resources, and support. We are the only government entity that works across the entire disability system to help it work better and reach more people. We build partnerships across government and private organizations so we can all work together toward common goals. The urgency of that work has never been clearer.

If you want to get involved or learn more about our work, please reach out: TNDDC@tn.gov.

Stay well, everyone!

Jolene Sharp
Chief Public Information Officer

2 Brief Surveys from Us

Have you noticed a lot of surveys lately? We have, too!

There are several reasons for this. One is that the state fiscal year ended on June 30. That means that disability agencies (like ours) that get state funding are working on year-end reporting. That often involves asking you how we’re doing with our work.

We and our partner organizations know you probably get tired of being asked for feedback. Filling out surveys can start to feel like an unpaid job!

So (you knew this was coming): we have a couple surveys below that we hope you’ll fill out! Here’s the best case we can make for why these are worth your time:

  • We made them as brief as we could – they should take less than 10 minutes total.
  • They offer a way for you to have a voice in our work. We really do listen and respond to your ideas and concerns.
  • They offer a way to show the government agencies who fund us how well we’re using those resources. For example:
    • Are we giving you information you need and can use?
    • How well are we reaching people who face extra barriers to information and services?

We could offer more reasons, but this is all about respecting your time! So, we’ll just say: thank you for reading and for sharing your feedback. It truly matters to us.

Get to Know a Leader: Emily Duchac, Office of Mobility and Accessible Transportation

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Emily Duchac, the Mobility and Accessible Transportation Supervisor for the Office of Mobility and Accessible Transportation. This fairly new office is a part of the TN Department of Transportation (TDOT).

Tell us a bit about your career background and your current role.

Emily: I started my career at TDOT in the Office of Public Transportation, where I administered different transportation grant programs, including the Section 5310: Enhanced Mobility of Seniors and Individuals with Disabilities program.  Now, I supervise the Office of Mobility and Accessible Transportation. 

My experience working with public transit agencies and the specialized disability and aging service providers in the 5310 program informs the job I do now, working to expand and improve accessible transportation and mobility across Tennessee.  I know how important it is that people have access to transportation, so they can be included in their communities and get where they need and want to go. 
 
What is one thing you’re working on right now that you are excited about?

The Office of Mobility and Accessible Transportation was created in 2020, and we first had to create a mission and a strategic plan to guide our work. Now that the initial planning is over, I’m excited to really dive into the priorities and goals we identified during the planning process.
 
One project that I’m excited about is the “HOPE” Job Access planning project. During our planning process, we heard from a lot of people, especially people with disabilities, who said that transportation to work was one of their biggest challenges. So, this project is focused on employment transportation, including rides to work, job training and job-related childcare. We just finished the public engagement process, and now we are taking that feedback and using it to develop a model for a potential Job Access program. To learn more about the Job Access Plan, you can visit the project website at https://tnjobaccessplan.com/.  
 
What is one of the biggest lessons you have learned from working with TN’s disability community?

The biggest lesson I have learned is that having choices and options is the most important part of mobility. One of our office’s goals is to support a transportation system that’s accessible to everyone, but “accessible transportation” can mean different things to different people. Just as an example, for some people, accessible transportation means a vehicle with a wheelchair lift that comes directly to their house. For other people, accessible transportation means a well-maintained sidewalk and crosswalk so they can travel independently. When only one option is available, it might not work for everyone. So, it’s important to have transportation options available that meet a spectrum of different needs.
 
If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?

If I could wave a magic wand to remove a barrier, I would make it easy for people to navigate the existing transportation system. Sometimes, even when there is transportation available at the right time and in the right place, people can’t find it or don’t know how to use it. Fortunately there are some great resources to help people find and use transportation. 

One thing you can do if you need help finding accessible transportation (and other services!) in your area is contact Tennessee Disability Pathfinder.  Many local public transportation providers also provide free travel training to help people learn to use the system independently.  
 
What are some activities you enjoy doing in your free time?

I like to hang out with my family and friends and find new places to eat brunch or try new food. I also really enjoy reading books and watching movies, and I’m always finding new favorites.  I like action movies and musicals the most!
 
When should members of the disability community reach out to you or your team directly?

Our office is always open to comments, concerns, questions, and ideas about accessible transportation and mobility in Tennessee.  We also issue an annual report every year, and we would love to include your transportation stories - both success stories and challenges that you face. 
 
Anyone with transportation-related comments is welcome to reach out to me directly at emily.duchac@tn.gov, or to contact us through the office email at TDOT.OMAT@tn.gov.  

New tool to find tech: TN Tech Connect

Tennessee Tech Connect is a brand new collaborative program between TN Disability Pathfinder ("Pathfinder") and the TN Department of Intellectual and Developmental Disabilities (DIDD). It was developed to provide information to the disability community about assistive and enabling technology.

The goal was to create a platform that connects Tennesseans with disabilities to technology tools that can provide support to them. You can search for devices, apps and other tech that can help with:

  • job training
  • transportation
  • independent living and daily tasks like cleaning, cooking, home safety, and taking medicine
  • communication
  • and much more!

Explore TN Tech Connect today by using the search options for type of need, stage of life, disability, payment options or other categories. We'd love to hear when you find a new tool that can help you achieve your goals!

Grants for adult-size changing tables extended through June 2024

During the 2022 legislative session, the TN General Assembly voted to invest $1 million to increase access to adult-size changing tables across the state. As part of that effort, led by many of our Council members, a new grant program through the TN Department of Intellectual and Developmental Disabilities (DIDD) was created. The program gives local governments and businesses open to the public up to $5,000 to buy and install height-adjustable adult-size changing tables in family restrooms across the state.

DIDD's grant program has been extended for another year! We still need your help finding businesses and other groups across TN to apply for the grant so that families throughout the state who need these tables can access them. Where do lots of families go in your community? That's where tables are needed!

Read more details in DIDD's press release here: "DIDD Extends Applications for Adult Changing Table Funding".

For stories about the need for adult changing tables, check out this page on our website. Please share this great new video from DIDD about a new table installed at the Creative Discovery Museum in Chattanooga and help us spread the word about this opportunity!

Disability Policy Corner (July 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities. 

Give Feedback and Get Involved (July 2023)

  • Now open - MAPS in West TN: This month, the new MAPS (Medicaid Alternative Pathways to Independence) program under the TN Department of Intellectual and Developmental Disabilities opens to people with disabilities from West TN. That means that now anyone across the state can apply for this program if they have an intellectual/developmental disability, graduated high school or will graduate within three years, and don't get any other long term services and supports. Learn more on DIDD's webpage about the services MAPS has to offer.
  • Deadline July 31 - Nominate an employer for TN's NEW "Inclusive Employer Award" - We need your help finding employers who are doing an excellent job hiring and supporting employees with disabilities! Nominate or help a business, employer, or state agency in your community apply for the award by July 31. Email Sundi.Wright@tn.gov. with any questions.
  • Deadline July 31 - TN Digital Access Survey - Take this brief survey here to help the TN Department of Economic and Community Development what barriers you or your family have with affording or using the internet or devices like smartphones, tablets or computers.
  • Vanderbilt/Amerigroup "Project ECHO" looking for health care providers to train on working with patients with disabilities: Do you wish your health care providers better understood how to serve you or your loved ones with intellectual and developmental disabilities? "Health care providers" can include doctors, nurse practitioners, physician assistants, psychologists, psychiatrists and licensed clinical social workers who work with Amerigroup/TennCare patients. Email the name and phone number or email address for your doctor or clinic, and the Project ECHO training team can take it from there: projectECHO@VUMC.org. They will contact the health care providers with information about the training.
  • Survey about mental health and behavioral health needs of TN children, teens, and young adults with disabilities:  This survey led by Vanderbilt researchers is about the experiences of parents and caregivers of youth with disabilities ages 1 and a half to 22 years old who also have a behavioral/mental health concern. This survey should take 30-45 minutes. See the link for more information. Contact Leah Sulmonetti or Gaby Herrera-Espinosa if you have any questions, comments, or concerns: Leah.sulmonetti@vanderbilt.edu or gabriela.herrera.espinosa@vanderbilt.edu.
  • Deadline Aug. 1 - national survey about needs of minimally verbal/non-speaking people (National Institute on Deafness and Other Communication Disorders). NIDCD invites anyone with interests in communication in minimally verbal/non-speaking people to fill out this survey from a personal, service delivery, or research point of view.
  • Aug. 17 - TN-NADD (TN's state chapter of the National Association of the Dually Diagnosed for people with intellectual/developmental disabilities and co-occurring mental health diagnoses) Annual Conference. People with disabilities and family members can attend for $20; there are in-person and virtual attendance options. See the agenda here and register for the conference here ASAP. (No special code required for registration.)
    • Council Executive Director Lauren Pearcy will be presenting on the Council's work on promoting behavioral health best practices. Roddey Coe, 2018 Partners graduate and former Council member, will be speaking during the final panel. Other past Partners grads are featured speakers too!
  • Aug 26 and beyond - New monthly Saturday "Sibshops" launching in Middle TN (Nashville at Vanderbilt University) for kids ages 8-13 with brothers and sisters with disabilities. Click here to fill out an interest form and be added to the contact list for more information.

June 2023

Click here to see the original email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

Ten years ago this week, Tennessee became an Employment First state. Governor Bill Haslam signed the executive order on June 13, 2013. Governor Bill Lee has continued the commitment.

What does being an Employment First state mean?

  • It means that our state’s disability service programs work together to support meaningful employment for people with disabilities. 
  • It means that today, thousands more people with disabilities are earning full wages at jobs they love in the community.
  • It means greater independence, inclusion, and self-determination for people with disabilities – including those who need the most supports.

In the decades before Employment First, most people with disabilities could at best expect to work menial jobs in closed settings. They were often paid well below minimum wage. Today, our state’s services work to help people pursue their personal career goals with full-wage jobs, working alongside people without disabilities. (Those services include programs like Employment and Community First CHOICES, Vocational Rehabilitation, Individual Placement and Support for people with mental health diagnoses, Enabling Technology, and more.)

The theme for Tennessee’s year-long Employment First celebration is “Purpose, Progress, Partnership.”   

  • So many more people with disabilities have found a sense of purpose through meaningful work. Our state agencies and advocacy groups have a deep sense of purpose in supporting the career dreams of those we serve.
  • The resulting progress is clear, both for people with disabilities and for our entire state.
  • And none of this would have happened without the partnership of more than a dozen state agencies and disability organizations working together toward a common goal.  (This short video shows how our Employment Roundtable has been one important place for those partnerships to grow!)

We hope you’ll stay tuned to celebrate with us over the next year. And we hope you’ll be a part of the ongoing work. There is much more to do! The future of employment for people with disabilities depends on continued purpose, progress, and partnership.
 
Happy summer, everyone!

Jolene Sharp
Chief Public Information Officer

Promising Program Spotlight: LINCS (Leaders in Inclusive Services)

At our most recent Council retreat, we heard about several new programs in Tennessee that are serving people with disabilities in innovative ways. Thanks to Christian Ceccotti, Manager for Provider Workforce Development in Long-Term Services and Supports -Provider Relations for BlueCare for sharing information about one of the programs we learned about. LINCs is a new way to find more people who want to work as "direct support professionals." Read below to learn more.

Acronyms to know for this article

  • HCBS = home- and community-based services and supports. These are services paid for by Medicaid to help people with disabilities live good lives in their communities. One major program that provides HCBS in Tennessee is the Employment and Community First CHOICES program.
  • LTSS = long-term services and supports. These are medical and/or personal care and supportive services to help people with activities of daily living, like bathing, dressing, eating, transfers from wheelchairs, and toileting. They can also include help with activities like housework, preparing meals, taking medications, shopping, employment, transportation, and managing money. These services are paid for by Medicaid. LTSS includes help for people living in nursing homes or other institutions AND services people get in their homes and communities (HCBS).
  • DSPs = direct support professionals.  DSPs are workers that support people with disabilities getting these sorts of Medicaid services like HCBS.

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The Workforce Development Team at BlueCare is dedicated to helping our providers with the unique challenges they are facing in hiring and keeping workers. “Providers” are companies that offer HCBS to people that have physical, intellectual, and developmental disabilities. The processes of hiring, training, and keeping staff these days are very complicated.

What we face today is a rare combination of factors that have led to unique workforce challenges across healthcare, especially in LTSS. The Direct Support Professional, or DSP, is the most common role for the LTSS side of healthcare. DSPs provide front-line in-home and community services and supports to these individuals. At BlueCare, we work to bring new programs, connections, solutions, and tools to our providers to overcome these workforce challenges.

DSPs are responsible for a very wide variety of services such as:

  • Personal Assistance
  • Job Exploration/Coaching/Development
  • Respite
  • Behavioral supports
  • Working in Community Living/Group Homes
  • Helping with Assistive and Enabling Technology
  • And many more (nearly 50 in fact!)

There are obviously many staffing needs across these many services.  Because of these types of services, people with intellectual and developmental disabilities (IDD) can live, work, and be a part of their communities, at their own pace.  Every person deserves to live a full, happy, and healthy life.

In response to these challenges and service needs, we have created Leaders in Inclusive Services, or LINCS.  Relationships and partnerships have been key in the creation of LINCS.  This new program was created by BlueCare and several partners:

  • Four Universities (Vanderbilt, ETSU, MTSU, and Memphis)
  • TN Department of Education
  • Vocational Rehabilitation (TN Dept. of Human Services)
  • TennCare
  • The TN and National Centers for the Deaf
  • …And others.

The goal is to create a connection with high school and college students interested in several career areas. These career areas include:

  • Healthcare
  • Social Work
  • Education and Special Education
  • Rehabilitative Therapy
  • Criminal Justice and Law Enforcement
  • Psychology/Psychiatry/Family Counseling
  • Public Policy Design/Planning/Administration
  • and many others

These areas are all related to the responsibilities found in LTSS for physical, intellectual, and developmental disabilities. LINCS trains these students to work as DSPs. That helps students:

  • Get hands-on experience
  • Learn from mentors
  • Get into colleges
  • Build their resume
  • Get scholarships to our partnered universities

LINCS is a road to healthcare and these other career paths, which will help Tennessee going into the future.

You can find the LINCS job openings in a couple ways:

  • Find them on Jobs4TN.gov listed as “LINCS Assistant DSPs” for high school roles and “LINCS DSPs” for college roles
  • Contact BlueCare Workforce Team members--To get involved, just contact BlueCare WFD directly—we have direct contacts at all four participating universities.
  • Connect to a provider agency directly.

LINCS has many positives for Tennessee. Teaching students about the disability community may be the most important long-term benefit of the program. Working together, we can make sure we are providing the important services that Tennesseans need.

Welcome, New Vanderbilt Kennedy Center Leaders

This month, our long-time partner Elise McMillan, director of the Vanderbilt Kennedy Center (our TN Developmental Disabilities Network partner) will be retiring after 28 years in the disability field. In addition to her work leading the Kennedy Center, she is also the parent of a young adult with Down Syndrome (Will McMillan) and a 1996 graduate of our Partners in Policymaking Leadership Institute.

As our DD Network partner, Elise has served on our Council for many years. She has been instrumental in creating and expanding several major priorities of the Council, including (but not limited to!):

Learn more about the history of some of this work in an article Elise wrote for our magazine celebrating the legacy of our former Executive Director, Wanda Willis ("Big Solutions for Real Needs", Breaking Ground 108, winter 2021.)

Read more about the amazing impact Elise has had on the landscape of disability supports, policy and research in our state here from the May issue of "Notables" from Vanderbilt Kennedy Center.

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The Vanderbilt Kennedy Center recently announced new leadership for its University Center for Excellence in Developmental Disabilities (VKC UCEDD). Julie Lounds Taylor, Ph.D., and Pablo Juárez, M.Ed., BCBA, LBA. Pablo and Julie are taking over as co-directors of the UCEDD as Elise retires.

Both of these leaders each have longstanding histories with the VKC and bring unique expertise to the UCEDD with an emphasis on research, program development and expansion, and advocacy.

Our Council Executive Director Lauren Pearcy, shared about this transition, "Tennessee has a long history of partnership between VKC and the Council. I’m convinced that the reason we have accomplished so much together is because of the strong relationships between our leaders. We know these new leaders will continue that legacy."

Read more about Pablo and Julie's careers in the same May issue of "Notables" here.

Research Study: Down syndrome and autism overlap

Our Council member for Memphis Delta development district, Shontie Brown (also a graduate of our Partners in Policymaking program), asked us to share information about this research opportunity. The research is about screening tools for autism in children and teens with Down syndrome.

Shontie shared, "I was recently asked to serve on a community advisory panel to help reach people in the minority community and rural community with information about this study. Sharing information about research like this Down Syndrome/Autism Spectrum Disorder study matters to me because my daughter matters to me. It is important for families to know that a child with Down syndrome could also possibly be diagnosed with ASD, and they will need additional kinds of services and support. Parents and caregivers need to know more about early and accurate detection of autism spectrum disorder."

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Caregivers of children ages 6-18 with Down syndrome are invited to participate. Participation involves completing initial questionnaires about your child’s development and a few follow-up questionnaires two weeks later. The initial survey will take about 2.5–3 hours total, and the second survey will take about 30-45 minutes. You will receive a $30 Amazon e-gift card for completing the initial survey and a $10 Amazon e-gift card for completing the second survey. For more information, contact Dr. Channell’s research team at idclResearch@illinois.edu or 217-265-6058.

Disability Policy Corner (June 2023)

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities. 

Renewing Your TennCare

If you are currently enrolled in TennCare, you will likely receive a letter soon with options for how to redetermine your status. Do not ignore this letter or your TennCare benefits may be ended. To learn more, view this video by TennCare. If you receive this letter and do not understand it, you can contact:

  1. Disability Rights Tennessee | 1-800-342-1660 
  2. TennCare | 1 (855) 259-0701
  3. TN Healthcare Campaign | Linked Here
  4. TN Justice Center | 1-877-608-1009

Here are five ways to update your personal information for redetermination:

  1. Online through TennCare Connect at TennCareConnect.tn.gov
  2. Call TennCare Connect at 855.259.0701
  3. In-person by visiting the Department of Human Services (DHS) office in your county. 
  4. Mail completed and signed Renewal Packet to: TennCare Connect P.O. Box 305240; Nashville, TN, 37230-5240
  5. Fax completed and signed Renewal Packet to: 855.315.0669

Learn more about the TennCare renewal process here.

TN Department of Health Focus Groups - 7/13-/8/1

The Tennessee Department of Health – Division of Health Planning is seeking input on the next Tennessee State Health Plan. The State Health Plan reviews the health of Tennessee and provides recommendations to state leadership on how to improve health.

Through a series of focus groups, the Department of Health is looking to gather feedback across the state on recommendations to be included in the next plan. Click here for more information and to register. There are events in Memphis, Nashville, Knoxville, and online. 

Learn more about the State Health Plan here. 

View a presentation about this feedback process for the new plan.

May 2023

Click here to see the original email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

You may have noticed us talking a lot lately about behavioral health for people with intellectual and developmental disabilities (I/DD). I am happy to share that we have a new web page about this topic. “Behavior supports” is now listed under our current priorities website tab.

But let’s back up for a minute. WHY is the issue of behavior supports a priority for our Council?

My daughter, Lina, is 10 and has Down syndrome. She is a bright kid who takes in so much – and has big feelings about all of it. Sometimes, she doesn’t have the words or tools to manage those feelings or to say what she needs. That can lead to behavior that hurts others or disrupts her learning at school. We’ve learned a lot about supports that set her up for success. But needs can change. The detective work of understanding Lina’s needs is never really over. That’s how our Healthy Behavior checklist began – from my own experience. (That checklist is a tool on our new page. Share it, download it, bookmark it!)

I have learned that Lina is far from alone. Our Council staff hears stories nearly every day about people with I/DD who have behavior support needs. Their families and supporters are often struggling to understand the needs behind the behavior. The right help can be very hard to find. As parents, seeing our kids struggle creates stress for us, too. In fact, we all have support needs!

The Council’s new web page offers one place for clear, reliable information and resources about behavioral health for Tennesseans with intellectual and developmental disabilities. But we know this is just the beginning. There is much more work to do. Your stories help us understand what’s needed and where we want to go. As always, our vision will be rooted in our Developmental Disabilities Act values of self-determination, inclusion, and independence for all people with disabilities.

Contact us with feedback on the new webpage or share your experiences any time at TNDDC@tn.gov. 

Have a great rest of the week, everyone!

- Jolene Sharp, Chief Public Information Officer

Reflections from Public Policy Intern Lindsey Guerin

"With my internship ending this month, I wanted to first thank the members of the Council and everyone else I have had the opportunity to meet! I had a fantastic experience working with the Council and have learned so much. In my introduction newsletter back in January, I mentioned that I had hoped to learn about programs, resources, and other ways to help people with disabilities and their families during my time as an intern. While I feel like I have done this, I have also learned so much about state government and the disability community.

Coming from a biomedical PhD program, this internship was out of my wheelhouse but I was able to immediately appreciate how important the work the Council does is to the people of Tennessee. The programs and resources available to people with disabilities are incredibly complicated and confusing. I can only imagine what it feels like to have to navigate this system for yourself or a loved one. I have been so impressed by the in-depth knowledge that I’ve seen friends and family put into action. However, I have also been struck by how this all feels incredibly frustrating. Trying to find an existing service, or create one that’s desperately needed, requires an understanding that you must build on over years. It felt to me that getting information out to the people who would benefit most is the limiting step. While there’s clearly work to be done, it feels like the Council is making real progress. Through listening and learning, I was happy to contribute to their work for the brief period of my internship.

It’s easy to get caught up in the political news at the federal level— it seems like there’s always a fire somewhere. However, I now more clearly appreciate how the programs at the local and state level impact people every day. My experiences in this internship have motivated me to stay informed and involved in disability policy. As I think about my next steps after I defend my thesis, I hope to continue working to create opportunities and improve the experiences of people with disabilities and their families. "

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We thank Lindsey for her tireless efforts on a variety of policy projects this semester!

Get to Know a Leader: Jay Camperlino, Youth Transitions Director, TN Department of Intellectual and Developmental Disabilities

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Jason “Jay” Camperlino, the Youth Transitions Director for the Department of Intellectual and Developmental Disabilities (DIDD). Jay oversees the development and implementation of the Medicaid Alternative Pathways to Independence program, otherwise known as MAPs.

Tell us a bit about your career background and your current role.

I began my career 20+ years ago as a Direct Support Professional working directly with people with disabilities who exited state institutions.  Over the years, I have held various leadership roles with organizations including serving as Executive Director for a provider agency in middle Tennessee. I also have experience providing direct foster-based care for individuals within my home. I often draw on my direct experience as a DSP/Foster Family in my role now as the leader of the MAPs program. These experiences drive my passion for supporting people with disabilities to live meaningful and independent lives. 

What is one thing you’re working on right now that you are excited about?

Well, the entire development of the MAPs program has been the most exciting and challenging program I have ever been involved with!  Starting a program from the ground up is full of wonderful opportunities, and I am just so excited to be able to work on this program day in and day out. Helping provide the shape to a program that will provide access to technology and employment opportunities for people with intellectual and developmental disabilities is truly exciting!

I get to work with wonderful partners at Vocational Rehabilitation, TennCare, and staff within the Division of Program Innovation at DIDD; it truly has been a blessing to perform these work roles!  Ask me about how MAPs can help you!  I love talking about this program!

What is one of the biggest lessons you have learned from working with TN’s disability community?

Oh man, great question!  I would say communication and transparency cannot be underestimated.  Trust is developed and maintained through appropriate and effective communication, and without ensuring that there are avenues to speak openly, well, we would miss those opportunities to grow.  And without transparency, good ideas and recommendations may not come to the surface. 

I hope to approach each situation recognizing just how important communication and transparency is when working with my community and partners. 

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?

Honestly, I am so darn proud of the State of Tennessee for its vision and commitment to using the current magic wands at our disposal.  I think the addition of the MAPs program is removing a barrier to services that didn’t exist for several Tennesseans.  I applaud the vision of our Governor and state legislature for hearing the opportunity to offer a program like MAPs and voting to approve the funding to deliver!  Now, we have our work cut out for us to make sure that the MAPs program and services look consistent across all areas of Tennessee.

I am often asked about how rural areas are going to have the same opportunities to access community resources like other regions and, candidly, there is just still a barrier in some locations in the state of TN to access high quality/high speed internet.  If I could wave that magic wand, it would be to ensure that the entire state of TN had uninterrupted and dedicated internet services. 

What are some activities you enjoy doing in your free time?
Being a husband and a father are the single greatest joys in my life.  I am blessed to spend time with the love of my life, Brandy, and together raise 2 rambunctious and very busy boys!

My oldest son, Brayden, is learning to drive and while this is a terrifying experience, I enjoy seeing him grow and mature into a fine young man that he is becoming.  My youngest son, Bryson, is almost like looking in the mirror.  I enjoy all the unique and fun situations he puts me in to be the best dad I can.

With both of my boys being athletes, I can often be found traveling the state heading to some form of athletic event and I would not have it any other way!

When should members of the disability community reach out to you or your team directly?

I would encourage ANYONE to reach out to me directly, via phone or email, anytime they have a question, recommendation, or concern regarding anything related to the MAPs program.  My email is jason.camperlino@tn.gov and my phone number is 629-250-9367.

This is a new program, and we are learning along the way, and it is my commitment to engage in those honest and transparent discussions regarding the progression of this program.  I want to hear from you.  I need to hear from you.  And I thank you for reaching out to me as it will only make this program better! 

Disability Policy Corner (May 2023 )

We're on a break from our weekly policy newsletter until the legislature begins again in January. In the meantime, we'll keep you updated here on the most important state and national policy news affecting people with disabilities. 

Tennessee Disability Pathfinder Feedback Survey 

Have you used Tennessee Disability Pathfinder (www.tnpathfinder.org) within the last year? Help Pathfinder by sharing your experience! Complete a brief feedback survey (3-4 minutes).
 
Click here to share your thoughts before May 31: https://redcap.link/8vhac3um
 
Thank you for sharing your feedback!

Digital Access Survey

The TN Department of Economic and Community Development (TN-ECD) is writing a "State Digital Opportunity Plan." The plan will support new state programs that will help with digital skills, literacy, inclusion, and affordability. This can include:

  • being able to use or access the internet
  • having enough money to afford internet access and devices like smartphones, tablets, or computers
  • understanding how to use the internet and devices safely and effectively

They need to hear from Tennesseans with disabilities, as well other underserved groups, including:

  • Older Tennesseans
  • English language learners
  • Rural residents
  • People with low incomes
  • People from racial/ethnic minority groups
  • Veterans
  • People who were incarcerated within the past 6 months

Take the brief survey here - it is 7 questions long and should take less than 5 minutes. The survey will not collect any personal identifying information. 
  
If you have any questions or concerns, contact Leah Mims (leah.mims@tn.gov) or Codi Drake (codi.drake@tn.gov). Help share this survey so they can hear from as many Tennesseans who need help with digital access as possible.

Survey for Tennesseans with low vision and blindness

A company named Synergy Consulting is leading a survey for people in TN with low vision or blindness. This survey will help the TN Department of Human Services' Vocational Rehabilitation (VR) program understand the needs of the blind and low vision community so they can improve their services to better meet those needs.

The survey is anonymous and should take about 10 minutes to complete.  You can take the survey on your home computer, tablet, or smartphone. 
 
Click on this link to take the survey: https://synergyconsulting.qualtrics.com/jfe/form/SV_5vb8q9Vh065Y1Bs

If you prefer to take the survey by telephone, use the following link to schedule a date and time for someone to assist you in taking the survey: https://calendly.com/calsynergy/low-vision-blindness-survey

If you have questions, contact any of the emails listed below.

April 2023

Click here to see the original  email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

We have 21 new reasons to celebrate! That’s how many graduates joined our Partners in Policymaking® alumni network this past weekend. Learn more about each graduate and share your congratulations on our Facebook or Twitter feed! Enjoy a few photos from their final session below.

Our new graduates join hundreds of Partners alumni who have been leading change in Tennessee for 30 years. We’re continuing to celebrate that anniversary with the hashtag #PartnersTN30. If you’re a grad, use the hashtag to share how Partners has helped you work for change!

We’re also going to spend the coming months planning for the future of Partners in Policymaking. A lot has changed in recent years. There are new technology tools and new ways to connect and learn. We’ll be asking our Partners graduates about what they want to see for the future of this program. We’ll also be planning a reunion for Partners graduates to reconnect in person – something our network has said they’re eager to do!

With all this celebration and planning, we’ll be pausing on enrolling a new class of Partners scholars for the 2023-24 year. We’ll be giving our full attention to celebrating the past and planning for the future of the Partners in Policymaking® Leadership Institute.

During graduation weekend, our Partners scholars designed vision boards to show what they’ve learned and where they are headed. Our Executive Director, Lauren, noticed that many of the boards included garden imagery.

As I look out my window at the vivid greens of Tennessee spring, I agree with our Partners grads: nature provides the perfect metaphor for constant growth that keeps us moving forward.
  
Happy spring, everyone!

Jolene Sharp
Chief Public Information Officer

P.S. Huge thanks to our Director of Leadership Development, Cathlyn Smith, for guiding BOTH our Partners and Leadership Academy for Excellence in Disability Services programs with skill, wisdom, and compassion! She's had a very busy month, but we know she takes great pride in the accomplishments of both classes of graduates.

Congratulations to our 2023 Partners in Policymaking graduating class

  • Heather Bensch - Ripley
  • Becca Brnik - Cleveland
  • Colleen Campbell - Madison
  • Sarah Clinton - Nashville
  • Olivia Crossman - Nashville
  • Swathi Dasari - Brentwood
  • Monica Everett - Cordova
  • Barbara Goodrum - Paris
  • Jennifer Hout - Franklin
  • Gregory Hutchins - Murfreesboro
  • Kevin Krieb - Christiana
  • Nidhi Mali - Memphis
  • Alexis May - Milan
  • Katie Moore - Jackson
  • Lia Nichol - Powell
  • Edel Pace - Lebanon
  • Justin Ralls - Greenfield
  • Lindy Register - Bells
  • Sidney Roark - Oak Ridge
  • Dr. Sharon Webb - Memphis
  • Fleur Whitehead - Clarksville

Fourth Class of TN Leadership Academy for Excellence in Disability Services (LAEDS) Graduates

In addition to our Partners class, we celebrated another graduation this month - the fourth class of the state Leadership Academy for Excellence in Disability Services. The Council developed LAEDS in partnership with the TN Dept. of Human Resources back in 2015-16. 

LAEDS is a year-long leadership development program for state employees whose work has a direct impact on Tennesseans with disabilities and their families. The goal is to ensure that these leaders in state government work from a shared set of values, goals and principles. The academy builds relationships and collaboration among state agency partners.

Participants from this year's class represented:

  • TennCare
  • TN Department of Transportation
  • TN Department of Human Services
  • TN Department of Intellectual and Developmental Disabilities
  • TN Department of Safety
  • TN Department of Veterans Services
  • TN Department of Corrections

They learned about:

Congratulations and a big thank you to these state leaders for your dedication to serving your customers and clients who are a part of TN's disability community. And thanks to our partners at the Dept. of Human Resources for making all 4 classes of the academy a big success. Check out this brief YouTube video for stories about how this program has impacted TN leaders in the disability field!

Get to Know a Leader: Kati Snow, Assistant Director of Employment and Community First (ECF) CHOICES and Katie Beckett programs, TennCare

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.
 
Meet Kati Snow with TennCare.

Tell us a bit about your career background and your current role.

Before coming to TennCare, I had the opportunity to serve older adults and adults with disabilities in "continuing care communities" for 8+ years. For those who are not familiar, continuing care communities are communities that people can move to and live out the rest of their days. Essentially, these communities can provide all aspects of care – from independent living options to long-term care (nursing home) level of care.

During my time in continuing care communities, I had many roles. But my most recent role was the social worker in the skilled nursing facility part of the community. In this role, I had the opportunity to refer people for services and supports to help them be as independent as possible in the community. I also advocated daily for the best interest of each person to enhance their quality of life. Person-centered care was a huge part of my advocacy, as every person is unique and has a right to have their wants and needs honored.

In my current role as the Assistant Director of Employment and Community First (ECF) CHOICES and Katie Beckett, I help the Director manage the many different aspects of both ECF CHOICES and Katie Beckett to ensure that each program serves its members in the best way possible. We provide oversight and support for both programs.

There are many different things that we do on a day-to-day basis that I could write a whole article on. I would say that the most important thing that Gary Smith, the Director, and I do is ensure that our members are getting the services and supports that they need to thrive in the community. If our members are thriving, then our programs are doing what they were intended to do. Our members will always be our primary focus because they are the reason that we do what we do!

What is one thing you’re working on right now that you are excited about?
Recently, one project that Gary and I have been working on is improving our website. We have been working with our partners, advocacy groups, and members/families on making our website more user-friendly and easier to understand. We hope that when potential members or their families visit our website, it helps them to better understand the different programs that Long-Term Services and Supports at TennCare offers and how these programs would be helpful for their specific needs.

Of course, there are many things that are constantly in the works! But this is one area I am excited to share about because the more people that know about the programs that Long-Term Services and Supports at TennCare offers, then the more people we are able to serve and assist in meeting their life goals.

What is one of the biggest lessons you have learned from working with TN’s disability community?
That every single person is so resilient and capable of so much, if they just have someone to believe in them. We see this every day in the success stories shared by our members and their families. We also see this in the stories they share about obstacles they have had to navigate and tackle to advocate for themselves or their loved one. Our members and families reinforce the reason I am here daily – to make things accessible and available for everyone while believing that each person is capable of so much.

If you could wave a magic wand to remove a barrier to doing all that you want to be doing in your role, what would that look like?
If I could wave a magic wand to remove a barrier, it would be to resolve the workforce challenges entirely. Since the COVID-19 Public Health Emergency, staffing has been an issue across the board and across the country. I dealt with the workforce challenges in my previous position, as well.

TennCare is actively involved in many different projects to grow and develop the direct care workforce. For further information on these projects, please visit: TennCare Workforce Initiative | TennCare (umn.edu).

What are some activities you enjoy doing in your free time?
I love spending quality time with my husband, family, and friends. My husband, Ben, and I have two dachshunds, Charlotte and Henry, and a cat, Cowboy, and all three of them are the best snuggle buddies. We also have 4 nieces and 4 nephews who keep us busy going to games, recitals, plays, etc.

When I am not busy with family and friends, I love attending my small group Bible study, watching football (Go Vols! Go Titans!), doing modern calligraphy, propagating plants, and reading. I also cannot say no to a good Netflix binge, especially if it involves real life crime stories. The psychology of criminal behavior has always been an interest to me. But don’t worry, I also very much enjoy wholesome shows like The Office, Golden Girls, and Gilmore Girls.

When should members of the disability community reach out to you or your team directly?
I know Gary and I both love to hear from our members and their families. Our emails are always open. Anyone is welcome to reach out to us regarding any issues, concerns, successes, improvement opportunities, things that are going well, etc. My email is Kathryn.R.Snow@tn.gov and (Director of Employment and Community First CHOICES and Katie Beckett) Gary Smith’s email is Gary.A.Smith@tn.gov.

March 2023

Click here to see the original email campaign with photos.

From the Council's Chief Public Information Officer

I’m a communicator. That means I spend a lot of time thinking about the power of stories.

I can still remember lying in my bed as a little girl, listening with rapt attention as my dad told my brother and me “math stories.” These stories were silly, glorified word problems. My brother and I would take turns solving the equation to move the plot forward. I loved those stories, but it wasn’t because I loved math. It was because I loved my dad. Those stories brought connection.

That might seem worlds away from state policymaking, but I see a common thread. Last week was Disability Day on the Hill. I had the privilege of sitting in on a couple of our Council members’ legislator meetings. I watched in awe as those members shared their stories and perspectives with policymakers. These weren’t silly bedtime stories, but the effect was familiar: connection.

Stories help us relate to each other. They help us find common ground. Our Council members can tell you: your stories matter. In a time of deep division and distrust, they might matter more than ever. Keep telling them, in all the places they need to be heard. You might be surprised what happens.

In this issue of the Council News, you’ll read about one issue that came up in many Disability Day on the Hill discussions: school supports for students with behavioral needs. We’re introducing you to a key leader at the TN Department of Education. We’re highlighting a key program that provides FREE help to schools and families for students who need behavioral supports. And we continue to welcome your behavioral support stories. They will help shape our continued work in this area.

And, we’ve got another exciting storytelling project in the works! We’re kicking off Developmental Disabilities Awareness Month 2023 with a big splash: by launching our celebration of 30 years of Partners in Policymaking Tennessee! The first TN Partners class started in 1993 and graduated in 1994. Ever since, graduates of this Council program have been leading the work for change for people with disabilities in our state. We can’t wait to share their stories with you in the coming weeks and months. (If you’re a Partners grad yourself, join the conversation by posting your own stories and photos using the hashtag #PartnersTN30!) 

Happy Developmental Disabilities Awareness Month, everyone!

Jolene Sharp
Chief Public Information Officer

Partners Graduate Story Spotlights

For the next year or so, we'll be sharing all kinds of stories about the positive things that graduates of our Partners in Policymaking® program are doing across TN. Hundreds of Tennesseans with disabilities and family members of people with disabilities have gone through this free leadership and advocacy training since we started offering it in TN in 1993-94.

Here are 5 recent stories written by or featuring our grads in our magazine Breaking Ground. Check them out!

  1. Breaking Ground 112 - STRIVE4You Inclusive Sports and Fitness - By Ricky Jones, 2011 Partners graduate and STRIVE4You co-founder (along with his wife, Christy, also a Partners grad)
  2. Breaking Ground 111 - Precious Cargo Act - Privately Disclose Your Disability to First Responders, Law Enforcement – featuring Martez Williams, 2017 graduate
  3. Breaking Ground 110 - Dancing our way to health and confidence - By Dave Griffin, 2021 graduate
  4. Breaking Ground 106 - Plant for a Change: A SustainABLE Business Takes Root – featuring quotes from Diamond Grigsby, 2021 graduate
  5. Breaking Ground 105 Arts - I AM DETERMINED! by Jen Vogus, 2007 Partners graduate

Have good news to share with us? Email us at tnddc@tn.gov any time.

Promising Program Spotlight: TN-TAN (TN Technical Assistance Network)

The Tennessee Technical Assistance Network (TN-TAN) is a program from the Tennessee Department of Education that offers free help to schools and families to support students with disabilities, ages 3-22. The network provides targeted, intensive supports in the areas of:

  • Assistive Technology
  • Autism
  • Intensive Behavior
  • Preschool
  • Response to Instruction and Intervention (RTI2) for Academics and Behavior
  • Secondary Transition

TN-TAN launched in July 2021. It is part of the Tennessee Department of Education’s (TDOE) strategic plan, called Best for All. TN-TAN came out of the department’s work to improve the use of Individuals with Disabilities Education Act (IDEA) discretionary funds.
 
Families or schools can learn more and access help at tn-tan.tnedu.gov. On the website, you’ll find:

  • A “Request Assistance” button
  • Details about the services available through TN-TAN
  • A calendar of TN-TAN events
  • Resources related to the focus areas listed above

To follow the network on social media, follow the TN-TAN on Twitter at @Tennessee_TAN.  For general questions, contact Angela Wegner at Angela.Wegner@tn.gov or TN-TAN at TN-TAN@utk.edu.

Questions from Council Members

TN-TAN leadership recently met with the Council on Developmental Disabilities to talk about the program. Here are some of the questions Council members asked, and answers TN-TAN provided:

  • How are you tracking or measuring success?

The TDOE has developed metrics to evaluate the TN-TAN system. These metrics are monitored by our TN-TAN evaluation partner and are reported in quarterly and annual reports to TDOE.
 
For example, our first annual report shows:

  • TN TAN supports 122 of the 144 Tennessee school districts
  • 80% of districts within each grand division
    • 83% West TN
    • 90% Middle TN
    • 81% East TN
  • Network online content was accessed 71,000 times during SY2022

Longer-term metrics, like outcomes for students the program supports, will be available over time.

  • How are you getting the word out to schools and families about your resources?

The TDOE and the TN-TAN are continuously sharing information with school districts, educators, families, and advocacy groups about the supports we offer and how to access them. We have been able to promote the network through a wide variety of TDOE and other Department newsletters, advocacy groups, speaking engagements, social media, and more.

If you would like us to come and share about the network with schools or families, please email us at TN-TAN@utk.edu. 

Get to Know a Leader: Jennifer Jordan, Assistant Commissioner of Special Education and Intervention Programs, TN Dept. of Education

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.
 
Meet Jennifer Jordan with the state Department of Education.

Tell us a bit about your career background and your current role.
I am currently the Assistant Commissioner of Special Education and Intervention Programs at the department. I have been with the department for 2 years and served as the Senior Director of Tutoring and Intervention prior to moving to the Assistant Commissioner position in October 2021.

Prior to joining the department, I worked my entire educational career in Lauderdale County Schools in West TN. I began my career as a special education teacher in 1988 and taught in a variety of settings for 10 years. While I was teaching, I earned my Master’s in Special Education.

I decided to go back to school after my daughter was born to earn my Educational Specialist degree in School Psychology and practiced for almost 10 years as a school psychologist. I then moved to the district level serving as special education director and literacy director for the district. I earned my Doctorate in Literacy and Reading in 2020.
 
What is one thing you’re working on right now that you are excited about? 
We have so many great things happening with my team that it is difficult to just talk about one of them. My team supports our students with unique learning needs across the state. These supports include those for:

  • students with disabilities,
  • English learners (EL), and 
  • students who need academic interventions.

I want to share one exciting initiative called the TN Technical Assistance Network (TN-TAN), which provides free support for a wide variety of needs across the state. TN-TAN provides school districts, administrators, educators, and families access to high-quality technical assistance, resources, and supports to improve outcomes for students with disabilities, ages 3-22. (Read more about this program in the article above!)
 
What is one of the biggest lessons you have learned from working with TN’s disability community? 
I think one of the biggest lessons I have learned in the last few years is to engage with families and members of the disability community on a regular basis. I have realized the importance of communication with the various stakeholders who support all students and their families.

When I was in the district, I was very aware of the needs of the families within my community and knew how to connect to those important supports in my area. I quickly realized that moving to the state level offered a deep pool of stakeholder resources. I am so excited to partner with these stakeholders as we all work together to improve outcomes for all students, but especially for those unique learners across Tennessee.'

My goal is to be accessible to all stakeholders and identify ways for my team to engage in this very important work of supporting students and families.

 
What are the 3 top education resources you think all TN families of students with disabilities should know about? 

  • I am so excited to raise awareness for TN-TAN among the disability community, because it is an amazing resource for districts and families. You can access all the resources that TN TAN offers by going to this website https://tn-tan.tnedu.gov/.  You can view a calendar of network events, access resources for each area of support, and click “Request Assistance” to request services provided by the network.  To follow the network on social media, follow the TN-TAN on Twitter at @Tennessee_TAN.  For general inquiries, contact Angela Wegner at Angela.Wegner@tn.gov or TN-TAN at TN-TAN@utk.edu.
  • Another great resource for families is to connect with our Family Engagement partner, the Arc of TN. The TDOE-funded Family Engagement in Special Education Project works to create a bridge between families and schools for a successful special education experience. The Family Engagement Team consists of regional specialists dedicated to helping schools, districts, and families across the state to increase family engagement in special education. One way they support districts is by hosting parent support group meetings for families whose children receive special education services. They can also help districts to think outside the box and develop a plan to better engage the families they serve. If your district is interested in learning more about receiving these free supports, visit familyengagementtn.com or reach out to Jen Aprea at japrea@thearctn.org.
  • The department is working to ensure schools are equipped with the knowledge and resources so that students with disabilities have access to assistive technology (AT) devices and services across all educational areas. School teams can identify possible areas of AT support with the resource, What is Assistive Technology?, and find answers to commonly asked questions about using AT in schools in our Assistive Technology FAQ.  Additionally, a new partner will be joining the TN-TAN to provide specialized supports in the areas of AT to school leaders, staff, and families.

What are some activities you enjoy doing in your free time?

I enjoy reading and listening to books on audio in my free time. I mostly read historical fiction but also enjoy a little suspense and sci-fi, as well. I try to move my body every day as I sit at a desk much of the day!  I love to do yoga every morning to start my day and then enjoy biking, running, and other outdoor activities when time allows. I am currently assisting with my daughter on her wedding planning for December, so it’s an exciting time for our family!
 
When should members of the disability community reach out to you or your team directly?
Families and other members of the disability community are encouraged to reach out to my team at any time. We are very happy to share resources and can provide contact information if we need to connect with other agencies.

We also have several dedicated email addresses that focus on specific needs, which I have listed below. Email is checked daily by multiple members of the team. Our goal is to respond in a timely manner with requested information or connections to other resources as needed.

East Tennesseans can now sign up for MAPs (TN Dept. of Intellectual and Developmental Disabilities program)

Enrollment for DIDD's MAPs (Medicaid Alternative Pathways to Independence) program recently opened to people with disabilities living in East TN. It opened to people living in Middle TN in November. If you live in East or Middle TN, you can apply any time.

MAPs can help you be more independent by giving you the tools, technology, and help you need to meet your goals when it comes to having a job, where you want to live, and how you want to live your life. 

This program is available to anyone with an intellectual or developmental disability diagnosis who has graduated high school or will graduate within three years. MAPs participants cannot be enrolled in another long term services and supports program including  ECF CHOICES, CHOICES, the Katie Beckett Program, or 1915(c) Waivers.

Learn more about MAPs on DIDD's webpage: tn.gov/didd/maps

Used TN Disability Pathfinder Recently? Share your story!

Help tell the story of Tennessee Disability Pathfinder! Have you recently called Pathfinder's helpline or used their website?

Sign up here to be considered for a brief virtual interview. Those who complete an interview will receive a $20 Amazon gift card. They are looking to interview adults with disabilities, family members, and professionals.

TN Disability MegaConference - Early Bird Rates, Stipends, Art Contest News

We're excited to once again be a sponsor of the statewide TN Disability MegaConference. Since 2002, The Arc Tennessee has partnered with many other disability organizations to host this annual learning and networking event for hundreds of members of the TN disability community.

Registration for the 2023 MegaConference at the Loews Vanderbilt Hotel in Nashville, TN on May 25-26 is now open.

Email questions to Mega@thearctn.org.

Feb. 2023

From the Council's Chief Public Information Officer

Dear readers,

We have heard from so many of you about the challenges of supporting a child or adult with a disability who communicates their needs through behavior. I have personal experience with this in my own family. It can be very difficult to get help to understand what your child with a developmental disability truly needs. The stress of challenging behavior can create a cycle of escalation and even trauma for families. 

Jennifer Coleman knows that stress very well. Her family struggled for a long time to know how to support her son, Tyler, who has Down syndrome. In our newest video below, Jennifer shares how their family finally accessed the help they needed. While the Employment and Community First CHOICES program was not an overnight solution, it opened the door to much-needed services. Jennifer worked hard to find solutions. The result is a much happier reality for Tyler and the entire family. 

If you need behavioral support or are the parent or supporter of a person who does, you are not alone. There is help available - please contact us with questions. (You can also always contact TN Disability Pathfinder for help finding services for any disability-related need.)

Keep reading for other behavioral health resources in Tennessee. You will continue to hear from us on this topic in the coming months. Stay tuned! In the meantime, contact us to share your experiences and questions: TNDDC@tn.gov. 

Jolene Sharp
Chief Public Information Officer

New Council Video: Coleman Family Story

Jennifer Coleman, a former member of our Council, lives in Paris, TN. She shares how her family found behavioral supports and other needed services for her son.

"Around age 3, Tyler started having some really serious behavioral issues that made it very hard for our family. In 2019, we were finally approved for the ECF CHOICES program. They didn't just hand over the answers to me, but it was like a door leading to some pieces that were very valuable. I would recommend seeking out the program. Ask lots of questions. It's a slow process, but there is light at the end of the tunnel."

Learn more or apply for Employment and Community First CHOICES.

NOTE: Captions available in both English and Spanish. 
AVISO: Subtítulos disponibles en inglés y español.

Get to Know a Leader: Caitlin Wright, Director of Behavioral Health Services, TennCare

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.
 
Meet Caitlin Wright, director of behavioral health services at TennCare. Caitlin is a licensed advanced practice social worker and has experience in mental health supports for people with intellectual and developmental disabilities (I/DD).

We often hear from families of those with I/DD and significant mental health concerns or challenging behaviors who need help. (Check out our new behavior supports checklist, if you haven’t seen it yet!)
 
Caitlin’s background makes her a great leader who is improving TennCare’s services and supports for people with I/DD who have behavioral health concerns.

Tell us a bit about your career background and your current role.
I am privileged to have recently returned to state government in my role as the Director of Behavioral Health Services at the Division of TennCare. I am eager to share my experience and expertise from my previous roles in the healthcare industry. They include:

  • inpatient settings,
  • community mental health centers,
  • Tennessee’s Department of Mental Health and Substance Abuse Services,
  • TennCare’s Long-Term Services and Supports,
  • and a health plan/managed care organization.

What is one thing you’re working on right now that you are excited about?
Being relatively new to my role, I am excited to build my team. We're working to make sure behavioral health services work together with other teams at TennCare, like population health, long-term services and supports, and others.
 
What is a lesson you have learned from working with TN’s disability community?
People in the disability community are experts on what services and supports work best for them and their loved ones. I believe it is important to ensure that their voice is heard in a tangible and practical way when programs and services are created and developed.  
 
What are some activities you enjoy doing in your free time?
I enjoy visiting some of the beautiful state parks in Tennessee, traveling to new places, trying new recipes, and spending lots of time with my family and friends.
 
When should members of the disability community reach out to you or your team directly?
Members of the community are welcome to reach out any time they have information to share or questions about TennCare’s behavioral health services. I can be reached at: Caitlin.a.wright@tn.gov.

Change through "Uncomfortable Conversations"

Councils on developmental disabilities just like ours are leading conversations for change in every U.S state and territory. Our network of councils was created by the federal Developmental Disabilities Act 50+ years ago. We exist to make sure state services are being shaped by people who need lifelong disability supports - and their families, who are often the main supporters. 

These conversations can be uncomfortable. Change is never easy. The voices of people with developmental disabilities have not been heard in the past. But councils like ours are connecting the disability community with state leaders so we can all work together on solutions. The result: greater inclusion, independence, and self-determination for people with developmental disabilities. 

Explore this new publication, "Uncomfortable Conversations" from the National Association of Councils on Developmental Disabilities, to see what this looks like across the nation on key issues like:

  • healthcare 
  • community living
  • employment
  • planning for a good life
  • supported decision-making
  • transportation
  • and more!

Check out page 6 for Tennessee names you might recognize - including our own Emma Shouse Garton and her brother, Evan!

Want to get involved in conversations like these? Contact us!

TN Believes Grants open through 3/31/23

Are there colleges in your community that you wish served students with intellectual disabilities? Let them know about the TN Believes grants! Deadline to apply is March 31.

From the TN Dept. of Intellectual and Developmental Disabilities (DIDD) website: "The purpose of these grants is to increase the number of inclusive higher education programs that serve students with intellectual and developmental disabilities in Tennessee."

DIDD awards grants to two- or four-year colleges and universities in the state that are committed to launching new programs or enhancing existing programs. These grants are intended to support the strategic planning and partnerships that will lead to the inclusion of students with intellectual and developmental disabilities in classrooms and campus life.

Our Council member for the Northwest TN, Brigham Scallion, helped create the new Eagle Access program through this grant at Dyersburg State Community College, the first program at a TN community college!

TN Disability MegaConference Registration Open

We're excited to once again be a sponsor of the statewide TN Disability MegaConference. Since 2002, The Arc Tennessee has partnered with many other disability organizations to host this annual learning and networking event for hundreds of members of the TN disability community.

Registration for the 2023 MegaConference at the Loews Vanderbilt Hotel in Nashville, TN on May 25-26 is now open.
 
Visit the TN Disability MegaConference website to learn more and to register.  Early bird registration rates last through March 31.
 
Click here if you are interested in applying for a stipend for help with paying for your conference registration and hotel costs. Apply before March 31.
 
Email questions to Mega@thearctn.org. We can't wait to see you!

TennCare Renewals

TennCare renewals are starting soon! Verify your address with TennCare by visiting TennCareConnect.tn.gov or by calling 855-259-0701.

Don’t risk a gap in health care coverage! Here are three steps you can do to prepare for TennCare renewals:

  1. Sign up for TennCare Connect. TennCare Connect is TennCare’s free, online portal (TennCareConnect.TN.gov), and select your communication preferences (text, email, mail, etc.).
  2. Verify your contact information with TennCare by visiting TennCareConnect.tn.gov or calling 855-259-0701.
  3. Open and respond to all mail from TennCare.

Learn more here on TennCare's website.

Jan.  2023

From the Council's Chief Public Information Officer

Dear readers,

Is it too late in the month for new year wishes? I’m going with it: Happy New Year, faithful readers! We at the Council hope you had a restful holiday season and are entering 2023 with hope and courage.

Our staff are already hard at work on Council priorities for this year. Growing employment for people with developmental disabilities is on that list, as it has been for many years. Check out our new video about the Employment Roundtable and how we’re working with partners to “close the gap” in employment rates for people with and without disabilities.

Also below: key details about Tennessee’s behavioral health safety net. This program makes sure that people who don’t have insurance or resources to pay for mental health care are still able to get the support they need.  If you or someone you love has a developmental disability and is struggling to access mental health care, please contact us. This is an area we’ll be working more on in the coming year.

These gray months of winter can be hard on all of us. I hope you’ll take courage in knowing that you are an important part of the Tennessee disability community. Together, we’re taking on a year of growth. Here’s to new opportunities in 2023!

Jolene Sharp
Chief Public Information Officer

New Council Video: TN's Disability Employment Roundtable

“The focus of the Employment Roundtable is to make sure state government programs that all have the same charge in different areas are rowing in the same direction, know each other, and can work together.” -Lauren Pearcy, Council Executive Director

Watch our new 2 minute video to learn why we began the Employment Roundtable and how this group is helping to close the gap between employment rates for people with and without disabilities in Tennessee.

For more history on the Roundtable and Employment First movement in TN, explore this page on our website.

Get to Know a Leader: Gary Smith, Director of Employment and Community First CHOICES and Katie Beckett, TennCare 

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Gary Smith, TennCare's new director of 2 important programs serving Tennesseans with intellectual and developmental disabilities:

  1. The Employment and Community First CHOICES ("ECF") program
  2. The Katie Beckett program

Click those links to read more about each program if you don't already know about them!

Tell us a bit about your career background and your current role.

I have been with TennCare in the role of the Director of Employment and Community First CHOICES and Katie Beckett since mid-October 2022.

Employment and Community First CHOICES is an innovative program providing services and supports to people with intellectual or developmental disabilities. This program has a strong focus on promoting independence, employment, and community integration.

The Katie Beckett program supports children under 18 with disabilities or complex medical needs,. The program is for children who do not meet Medicaid eligibility due to their parents' income or assets. The Katie Beckett program helps provide care for the medical or disability needs that private insurance does not cover.

My role is to provide leadership, oversight, and support for these two programs.
 
Before my current position, I was the Director of Early Childhood Special Education at the TN Department of Education (TDOE). I worked there for nearly 10 years. While at TDOE, I had a great passion for helping local school districts across the state offer quality integrated services for children with disabilities.

Before my time at TDOE, I was the Director of Child Care Planning and Development with the Department of Human Services. I worked there for over 10 years. Prior to that, my first job in Tennessee was with TN Voices for Children, a statewide advocacy and support organization for the emotional and behavioral well-being of children and their families.

What is one thing you’re working on right now that you are excited about?

I have been really excited and proud to learn about all of the great services being offered to support people and families in our state through TennCare. I am an advocate at heart. I’ve always been drawn to any mission that helps people and families in need. That is truly reflected in the two programs that I now have the privilege of leading.

These programs not only address practical needs, but also help Tennesseans grow and pursue meaningful goals in life.

What is one of the biggest lessons you have learned from working with TN’s disability community?

We have some truly amazing and resilient people with disabilities and families supporting them across our state. Each have their own unique and important story that’s often characterized by courage and determination.

I have also found that we have a lot of terrific professionals in our state who are passionately committed to supporting these folks and their families. These professionals are helping families navigate state systems that can sometimes be confusing and challenging.
 
Back in 2016, I had a great opportunity to participate in the first TN Leadership Academy for Excellence in Disability Services (LAEDS). (Council note: we started this academy in partnership with the TN Dept. of Human Resources. The third class will graduate this year.) This one-year program provided a great opportunity to engage with leaders across the state whose work impacts Tennesseans with disabilities. It was a great way to connect with others who have made it a personal mission to make Tennessee a better place for all. I’m grateful to have had this and many other opportunities to work with so many caring and compassionate people.

What are some activities you enjoy doing in your free time?

I enjoy spending time with my wife of over 27 years and our two older teenage boys. I love spending time at the beach. That’s a great place to play as well as contemplate life.

I enjoy both watching and playing sports. Being from Indiana, basketball remains my favorite. I exercise regularly. In many ways, it’s my therapy. I also enjoy reading for professional growth as well as personal pleasure.

My wife and I love having people over at our house, whether it’s for dinner, playing games, or just fellowshipping. I’ve been active in a number of ministries over the years. I enjoy supporting people at their point of need and helping them grow. Helping meet the needs of others is at my core and something I really enjoy doing both professionally and in my free time.  

When should members of the disability community reach out to you or your team directly?

Please direct any questions about the Employment and Community First CHOICES or Katie Beckett programs my way. While I am still learning, if I don’t know the answer, I will be glad to seek it out and provide direction. I can be reached at (615) 906-0450 or Gary.A.Smith@tn.gov

You can also reach Kati Snow, the Assistant Director of Employment and Community First CHOICES and Katie Beckett, at Kathryn.R.Snow@tn.gov.

Program Spotlight: Office of Mobility and Accessible Transportation, TN Dept. of Transportation

Thanks to Emily Duchac, Mobility and Accessible Transportation Supervisor, for answering our questions about this important TN program!

The Office of Mobility and Accessible Transportation is an office in the Tennessee Department of Transportation (TDOT). It was created in March 2020 by the Tennessee Accessible Transportation and Mobility Act.

The mission of the Office is to provide resources and expertise for expanding and improving accessible transportation and mobility across the state.  Accessible public transportation is in all 95 counties of Tennessee, but not every traveler has access to transportation when and where they need it.  We are working to help make accessible transportation more widely available and easier to use, so that more Tennesseans—especially seniors and individuals with disabilities—can get where they need to go.

In our first two years as an office, we heard from a lot of people across Tennessee, especially people who use accessible transportation and their families. We also talked to experts in aging, disability, and transportation, such as transportation providers. A few of the things we heard were that:

  • Transportation services can be very complicated or difficult to navigate, especially between urban and rural areas. Sometimes, even if transportation is available at the right place and time, people may not know how to find it or who to call to get help. 
  • Some kinds of transportation, like employment transportation, are a big challenge, both for riders and for transportation providers. For example, people often need to get to work at night and over the weekend, when many transportation providers are closed.
  • Accessible transportation users and providers both want technology solutions that make scheduling rides easier. 

Questions from Council Members

We recently met with the Council on Developmental Disabilities to discuss accessible transportation needs.  Here are some of the questions they asked, and our answers:

  • How do people with disabilities in rural areas get help with transportation?

Accessible public transportation in rural areas is provided by your local Human Resource Agency or Development District.  A list of public transit providers is available on TDOT’s website, or you can contact Disability Pathfinder for help. 

  • Are the vehicles provided by senior centers just for seniors/people traveling to the center?

Senior centers are different in every county. Some senior centers provide transportation just to the center and back home. Some senior centers provide transportation to other places, like grocery stores, doctor appointments, or the pharmacy.

Looking ahead: What’s next for 2023?

The Office follows a five-year Mobility and Accessible Transportation Strategic Plan that guides mobility and accessible transportation improvements across the state. This plan has five key goals:

  1. Expanded Access: Help local providers expand and improve transportation services
  2. Service Solutions: Address overlapping barriers to transportation
  3. Collaboration: Work together to fund transportation service
  4. Technology Solutions: Prioritize more user-focused transit technology
  5. Communication: Help travelers understand and access their transportation options

We will continue update the strategic plan every year as part of our annual report. This plan also supports projects that we are excited about. 

Some of the Office’s projects for 2023 include:

  • Tennessee Disability Pathfinder:  TDOT recently joined the Council on Development Disabilities and other state agencies in supporting Tennessee Disability Pathfinder. The goal of this project is to make it easier for people with disabilities to find and get connected to the transportation services they need. 
  • Statewide Job Access Plan: The Office is working with consultants and stakeholders across the state to develop a job access plan. The plan focuses on employment-related transportation, such as rides to work and work-related training and childcare. 
  • Transit Technology: Many transit agencies needed new software to help them schedule and dispatch rides. We also heard from transportation users who wanted more modern technology options, like smartphone apps. New preferred software vendors will help transit agencies schedule rides and offer more technology options for the future.  

To find out more about the Office, and to read the Strategic Plan and Annual Report, please visit our website.  If you would like to share your experiences with accessible transportation, or tell us how you would improve accessible transportation in Tennessee, you are welcome to reach out to us by email at TDOT.OMAT@tn.gov.

Program Spotlight: Behavioral Health Safety Net, TN Dept. of Mental Health and Substance Abuse Services (TDMHSAS)

Thanks to Matthew Parriott, communication director at TDMHSAS, for answering our questions about this important TN program!

What is TN’s Behavioral Health Safety Net?

The Behavioral Health Safety Net for Adults and Children (BHSN) is a program from the TN Dept of Mental Health and Substance Abuse Services. It provides important "safety net" services for people who do not have any behavioral health insurance or have limited behavioral health coverage. It lets people get the mental health treatment they may need. (These are "outpatient" services, which means services you get in your home or at community providers, not hospitals or residential institutions.)

Who is the program for?  

The BHSN for Adults program is for any Tennessean age 18 or older who:

  • has a qualifying mental health diagnosis (see a list on this page)
  • has an income at or below 138% of the Federal Poverty Level ($18,754 for a household of one and $38,295 for a household of four; see amounts for other households here)
  • has no behavioral health insurance, including TennCare or Veteran’s benefits (People with Medicare Part B who meet all other BHSN eligibility requirements may be enrolled to receive some outpatient mental health services not covered by Medicare.) 
  • are a US Citizen or have a qualified Alien Status (note: this is because this program is funded by state dollars)

The BHSN for Children program for TN kids ages 3 to 17 has similar eligibility requirements. 

There is no income cap for the BHSN for Children. Kids with private/commercial insurance or enrolled in CoverKids who meet all other eligibility requirements can get some outpatient mental health services that are not covered by their family's private/commercial insurance or CoverKids.

How do I get help through the Behavioral Health Safety Net? 

There are 15 Community Mental Health Agencies who provide BHSN services across the state. They have more than 130 physical locations. They can also help people through telehealth.

To apply for BHSN:

  1. Find a BHSN Provider in your area.
  2. Make an intake appointment.
  3. Tell them you want to apply for safety net services.

The provider will help figure out if you qualify and, if so, help get you or your child signed up.

For a list of BHSN Providers, visit the TDMHSAS website, look at the One Pager, or call the TDMHSAS helpline.

What happens after I am enrolled? 

After a person is enrolled in BHSN, they can get outpatient mental health services through the BHSN Provider with which they are enrolled. People are re-assessed for BHSN eligibility each year to make sure they still meet requirements. 

What might covered services look like?  
The most used services in the program are:

  • intake services for assessment and evaluation
  • case management
  • medication management appointments with psychiatrists or psychiatric nurse practitioners

Other services that may be offered include:

  • psychosocial rehabilitation
  • group therapy
  • peer support
  • transportation

BHSN for Children also offers family therapy and family support specialist services.

Who should I contact if I have questions?

The TDMHSAS Helpline offers families access to an advocate to listen to concerns and provide information about available resources. The Helpline is available Monday through Friday 8 a.m.-4:30 p.m. CT at (800) 560-5767 or at oca.tdmhsas@tn.gov.

December 2022

From the Council's Chief Public Information Officer

Dear readers,

My note this month is short and sweet – wishing you and those you love the very warmest of memories and peace and joy to last the year through.

From all of all of us at the Tennessee Council on Developmental Disabilities: HAPPIEST OF HOLIDAYS!

Jolene Sharp
Chief Public Information Officer

Jan. 15 deadline - Want to be a featured artist? Send us your work for Breaking Ground!

You could be published in a magazine reaching 6,000 people statewide!

Every year, the Council produces a special issue of our magazine, Breaking Ground, celebrating the creative work of Tennesseans with disabilities. We feature all kinds of artwork and writing, as well as articles about inclusive arts programs across the state.

Explore last year's issue, including videos from featured artists, here.

If you:

  • create any kind of visual art
  • take photos
  • write poetry, creative essays, or stories
  • make crafts
  • engage in other artistic activities

... send us your work! We can consider written work up to 1,000 words and up to 3 pieces of visual artwork.

If you act in plays, play instruments, sing, or dance, feel free to send us photos of yourself doing those activities, too.

Send your work by email to tnddc@tn.gov before January 15, 2023. Please include:

  • your name
  • where you live
  • a brief bio

It is important to us to celebrate work by artists from all kinds of diverse backgrounds, with all types of disabilities, and all sorts of life experiences. Please help us spread the word in your networks about this opportunity!

PowerUp Camp: Taking It to the Next Level with Technology

By Cathlyn Smith, Director of Leadership Development, Tennessee Council on Developmental Disabilities

Where can you go to experience a virtual reality game, zipline, and s’mores? PowerUp Tech Camp, of course!

In 2020, I joined a new workgroup with the Department of Intellectual and Developmental Disabilities (DIDD). Our mission: to create a technology camp for youth with intellectual and developmental disabilities (I/DD). Over the years, the Council has offered different types of leadership and self-advocacy trainings for youth and young adults with disabilities. We’ve hosted trainings in high schools, on college campuses during the summer, and in partnership with Centers for Independent Living. Along with our partners at DIDD, we wanted show youth with disabilities how technology could help them lead good lives.

During early conversations, I suggested the YMCA of Middle TN as a potential partner for the camp, since they already offer many recreation programs for people with I/DD.  “Full Circle” through the Brentwood YMCA offers classes and activities like swimming, arts, and music for people with intellectual and developmental disabilities. We decided to try out this new technology camp with youth connected to the Brentwood YMCA Full Circle program.

The workgroup met monthly through 2021 to develop goals and activities for the camp.  DIDD recruited technology vendors (including Able Link, CreateAbility, and Simply Home) who agreed to showcase new enabling technology to campers, their caregivers, and support staff.  The camp was led by DIDD’s “Tech Champions,” the director of DIDD’s Enabling Technology program, the YMCA Full Circle program director, and myself.

DIDD had a grant to fund the camp and the Council on Developmental Disabilities served as a partner for the project.  

On Oct. 13-15, 2022, we hosted the first PowerUp Technology camp for 35 young adults with disabilities ages 16 and older. It was held at Camp Widjiwagan (a YMCA camp located on Pearcy Priest lake in Nashville). It was a free day camp, with a new group of youth with disabilities participating each day. We provided snacks, lunch, T-shirts, swag bags, and certificates to the campers. We also offered a sensory room for those who needed some “quiet time” away from activities. We had an accessible private space for toileting/changing needs. Several campers were supported by staff or caregivers who helped them participate.

Campers visited three “tech stations,” where they got to try several different kinds of assistive technology.

  • At one station, campers used the Wayfinder app to navigate across the campground to the next station. Wayfinder can help people with disabilities get around town with precise navigation using maps and pictures.
  • At another station, campers safely boiled water on an induction oven, worked an automated medication dispenser, and tried out a video doorbell. These tools are offered through SimplyHome.
  • At a third station, campers used the MeMinder app offered through CreateAbility. The app uses pictures and voice directions to help a person finish different tasks based on their interests. The MeMinder app can be used on the job to set alarms and prompts to help the person stay on task and finish jobs successfully. One camper who enjoys cooking explored the app’s tools for safely and accurately following recipes.

Computer stations set up in the main camp lodge were set up for safe web browsing and games. Family members or supporters could learn how to manage access to keep the user safe on the internet.

Besides learning about all kinds of technology that can help them live more independently, the campers had a blast enjoying:

  • a fully accessible zipline
  • trampoline time
  • using virtual reality goggles
  • making s’mores at the fire pit
  • winning door prizes from the technology vendors

At the closing ceremony, the campers were given a camp t-shirt & certificate of participation.  We designed this camp so that it could be replicated across the state in the future with new partners.  

I recently asked two of my partners on the camp planning group, Carrie Brna from DIDD and Susan Sistruck from the YMCA Full Circle program, some questions:

How important are partnerships for a project like this?

  • Carrie: I think the PowerUp Tech Camp was successful because of the strong partnerships between the entire planning team: DIDD, the Council on Developmental Disabilities, the YMCA, and technology vendors. We regularly met for 2 years to work through all the details from start to finish. We planned everything together, from the camp location, camper recruitment, down to smaller details like the lunch menu and team names. Without the support of our partners and planning team, the whole experience wouldn’t have been possible. I am very grateful for everyone’s contribution to making camp such a fun and enriching experience for the campers.
  • Susan: I think strong partnerships are very important! By joining together, we can serve more people with disabilities, their families, and their support staff and make a bigger impact in the disability community. I also feel that by working together on projects like this, we learn so much from each other, making us more effective in our roles within our organizations. 

How do individuals with I/DD benefit from this type of camp?

  • Carrie: PowerUp Tech Camp provided the opportunity for people to experience firsthand different technology options that can be used to help them achieve their goals and to live, work and travel in their own communities more independently. Many of the technologies and devices that the campers learned about at camp were brand new to them. Just educating people about all types of technology will hopefully spark a new curiosity and further their interest in technology in the future.
  • Susan: People with I/DD, especially adults, don't often have opportunities to participate in a fun, informative, social event such as this. Having the opportunity to try the different enabling technologies was great for not only the adult with I/DD, but also their support staff. By combining education with the fun of the camp atmosphere, it was truly a unique experience. The campers had fun, made friends, and tried new things.

What did you personally get out of this experience?

  • Carrie: The best part of camp was getting to know the campers and watching their excitement as they were learning about the technologies. Sometimes, it’s hard to truly know the impact of our daily work at DIDD on the people we support. But spending time with the campers and seeing their excitement with all the experiences we organized for them at camp was the best reminder of why I love what I do.
  • Susan: I learned about enabling technologies that are available. This is helpful in my work with adults with I/DD. I am excited to share my knowledge. It was truly a joy to watch the campers as they were introduced to the possibilities of becoming more independent. I also loved seeing them interact with the other campers, making new friends, and overcoming their fears in trying new things like the zipline.

As for me, what I most enjoyed was working together with different professionals who serve people with disabilities in different ways. We all brought unique and personal perspectives to the table. PowerUp Tech Camp brought back many fond memories of my own summer camp days. I was a counselor one summer at a camp for people with I/DD, and it was one of the most rewarding experiences I’ve had.

At the end of one PowerUp camp day, I was sitting with a young participant. We were enjoying the s’mores we just made. He said as he laughed, “Ms. Cathlyn, I REALLY enjoyed myself today. I can’t wait to tell all my friends what they missed and I cannot WAIT to come back next year!”  The pure joy and excitement that this young man shared was the best outcome I could have imagined!

Get to Know a Leader: Penny Johnson, TN's Center for Decision Making Support, The Arc Tennessee

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities.

Meet Penny Johnson, the director of the TN Center for Decision Making Support, a part of The Arc Tennessee and supported by the Council, Disability Rights TN and other partners.

Tell us a bit about your career background and your current role.

I have 18 years of diverse social services experience and 10 years in private sector employment. My social service experience includes:

  • eligibility work
  • case management
  • program management; and 
  • program, policy, and training development

I started my social service career working for the Welfare Department in Las Vegas, Nevada. After moving to Tennessee, I worked for the Murfreesboro Housing Authority and later took a position at the TN Rehabilitation Center (TRC) as the Pre-Employment and Transition Services Coordinator. I left TRC to take the position with The Arc Tennessee as the Program Coordinator for their new program, the TN Center for Decision-Making Support.

As the Program Coordinator for the TN Center for Decision-Making Support, I manage all aspects of the Center's work from our website and program development to providing one-on-one help to people and families.

The TN Center for Decision-Making Support is a virtual resource center that provides information, resources, limited one-on-one assistance, best practice tools and legal referrals regarding decision-making support options. These options can include:

  • Conservatorship
  • Powers of Attorney
  • Special Needs Trusts
  • Supported Decision-Making
  • and more!

The Center works with people with disabilities, families, educators, and service providers to assist people with disabilities to develop decision-making skills and to learn about decision-making support options. The Center also provides workshops and trainings across the state. We provide advocacy help related to complex conservatorship issues and rights restoration cases.

What is one thing you’re working on right now that you are excited about?

I am really excited about the work our Training and Development Committee has been doing. They are a small group of representatives from various agencies who work with me to develop videos, trainings, and content for the website and Center materials.

We are currently developing a series of videos featuring Tennesseans sharing their stories of how they use Supported Decision-Making and other decision-making supports to create their “good life." (Explore our video library here!)

We are also developing a webinar series featuring national and state experts on topics related to decision-making supports, future planning, and practical tips to increase decision-making skills. These videos and webinars will be available to the public on our website. We hope this information will help improve the lives of people with disabilities.

What is one of the biggest lessons you have learned from working with TN’s disability community?

Tennessee has so many great resources and services for people with disabilities, yet I am surprised how often I meet families and professionals who are not aware of them. I think it is important to learn about as many resources as possible across the various service systems and share this information with others.

What are some activities you enjoy doing in your free time?

I am a nature lover.  In good weather, I love hiking, camping, swimming, biking, just about anything outdoors. (Just not fishing!) I also enjoy watching old classic movies and spending time with family playing board games.

When should members of the disability community reach out to you or your team directly?

Contact the Center when you need information about decision-making supports like conservatorship, powers of attorney, special needs trusts, Supported Decision-Making, etc. The purpose of the Center is to provide information about these tools in one central place. Though we can not provide legal advice, we can provide referrals to legal services.

You can reach the Center through our website contact page at https://www.tndecisionmaking.org/contact/. You can also contact me at 615.248.5878 extension 322; 800-835-7077 extension 322; 888-886-8310 (fax); or ds@thearctn.org.

Program Spotlight: Crisis help through TN START (TN Dept. of Intellectual and Developmental Disabilities)

Do you know people with intellectual or developmental disabilities who:

  • have recently been to emergency rooms or psychiatric hospitals for harmful behaviors?
  • had to move to a different setting because of challenging behaviors?
  • have complex mental health needs that required crisis intervention, calls to 911, or frequent medication changes within the last year?

If so, keep reading and share information about TN START!

TN START is a new program that started in 2021 at the TN Department of Intellectual and Developmental Disabilities (DIDD). The TN START Assessment and Stabilization Teams help people with intellectual and developmental disabilities (I/DD) who also have complex behavioral or mental health needs.

Right now, TN START can help any person with I/DD who gets Medicaid waiver services or those in the new MAPs program. See the list of those programs and read about future phases on the bottom of this webpage.  (DIDD will keep growing the program to serve more people. It is right now in "phase 2" of 5 phases.)

TN START is a collaboration between DIDD and the National Center for START Services. (The Council helped create TN START. We gave funding to DIDD to pay for training from the national center to build this new program.)

START stands for:

  • Systematic
  • Therapeutic
  • Assessment
  • Resources
  • Treatment

It is a comprehensive model of supports that helps people with disabilities work towards independence, treatment, and community living. TN START helps prevent and stabilize people during crises by:

  • Sending people to help someone and their caregivers during and/or right after a crisis ("crisis response")
  • Helping people connect to services and supports to keep them safe and improve their lives ("stabilization planning")
  • Training and education
  • Consultation
  • Partnering with different people and service systems that impact a person's life

Some highlights from TN START's first year:

  • The teams and Advisory Council learned about the current system that supports people with I/DD and mental health needs.
  • They worked to build capacity to support people with I/DD with mental health needs. They provided 84+ trainings across the state about TN START services, gaps in the system, and mental health for people with I/DD.
  • They developed a one-page reference for Emergency Rooms for supporting people with I/DD. (Read more about that story in our Council 2022 annual report - "Jackie's Story"!)
  • They began offering regular training through "Clinical Education Team" events.
  • 117 Tennesseans enrolled in the program and began receiving assessment and stabilization planning, as well as access to 24/7 crisis response.
    • Of the 298 crisis calls they got in 2021, 80% of the time they were able to stabilize the person in their community setting and avoid using other emergency services.

Check out these 2 videos about how TN START has helped real people in the program:

  1. TN START Overview
  2. Jadyne's Story (featuring 2022 Partners in Policymaking Leadership Institute graduate Jackie Kancir)

What's Next?

In 2023, TN START will keep moving through the phases of the roll-out plan to serve as many people as possible.

TN START will keep working together with its partners to make sure people with I/DD have access to person-centered and appropriate services and treatment to address their mental health needs.

Our thanks to Michelle Bagby for providing the information for this article. Michelle is Director of Behavioral Health & Crisis Services for DIDD. She is also the statewide Clinical Director for the Tennessee START Assessment & Stabilization Teams. Contact Michelle with questions about TN START or behavioral health supports for people with I/DD: Michelle.Bagby@tn.gov or (615) 615.913.0352.

Click here to refer someone to TN START.

Apply for inclusive higher education programs for Fall 2023 school year

Do you know students with intellectual disabilities who are leaving high school soon but want to continue their education? Make sure they explore Tennessee's inclusive higher education programs on college campuses! Learn more about these programs and financial help to pay for college on the TN Inclusive Higher Education Alliance website.

The deadlines to apply for the Fall 2023 semester are listed below with a link to each program's website. Many programs offer campus visit days where students and families can learn more.

Masked Autism Characteristics in High School Girls Study

Vanderbilt is conducting a study to better understand girls with autism and how/why autism characteristics are masked (or hidden or "camouflaged") in high school. If you are the mother of a high school girl with autism in inclusion for at least 80% of the school day, Vanderbilt researchers would love to hear the perspectives of both you and your daughter via a virtual interview and questionnaire. You can be paid for this study.

If you are interested, click here. Contact the research team by emailing Brittney.l.goscicki@vanderbilt.edu or sarah.a.calhoun@vanderbilt.edu.

November 2022

View the original email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

Is anyone else already dreaming of Thanksgiving dinner? I’ve been saving recipes for weeks. I admit, the menu is a central part of every holiday for me.

My family will be gathering in a little rental house at the lakeshore. We’re doing some extra celebrating this year: Thanksgiving Day is also my dad’s 70th birthday! (He says it’s okay to tell you that – he's earned his years.)

I’ve been thinking lately about what makes a good life. We talk about that a lot at the Council. Our work centers on making sure people with disabilities and their families have what they need for GOOD LIVES.

But what does that really mean? The specifics will be different for every person. Are there core ingredients?

Take my dad’s 70 years.

As many of you know, my dad lost his vision in a cycling accident in 1980. He has faced many barriers. His life has not been easy. But I think he’d tell you it has been GOOD.

Just to give you a glimpse: After his accident and recovery, dad returned to his career as a respiratory therapist. He served as the president of the Florida Society for Respiratory Care for many years. He retired last year as a recognized leader in his field.

Dad is an accomplished baker and cook. He and my mom enjoy camping and traveling with friends. He teaches an adult study class at church. He’s auditing an archaeology class at a nearby university. He was just elected to the neighborhood association board.

Above and through it all, my dad’s loving constancy has been a guiding star for our family. His made-up stories and games delight his grandchildren as they did his children.

While your specifics might be different, I’d guess your hopes for a good life have a lot of the same elements:

  • Warm and loving relationships
  • Community belonging
  • Meaningful work and service
  • Chances to create, learn, and explore (Pssst… If you’re an artist with a disability, send us your works and you could be published – see below for details!)
  • Personal beliefs and values that anchor your life
  • The ability to choose your own path and go after your own goals and interests

You'll see below two short videos that tell the story of how McKenzie Tuckson is getting support to speak for herself and live her vision for a good life. The services she gets through the Employment and Community First (ECF) CHOICES program help her to do that. Maybe those services could help you, too.

This Thanksgiving, I hope you have your own, long list of reasons for gratitude. If you are struggling, I wish for you hope in better days ahead. (Keep reading for other resources that might help.)

As I count my blessings, I include my coworkers at the Council – and each of you. Together, we are working to ensure for our loved ones with disabilities a future full of the ingredients for a GOOD LIFE.

With gratitude,

Jolene Sharp

Chief Public Information Officer

P.S. Stuck in a rut or not sure what a good life looks like for you or a loved one with a disability? Check out the Charting the LifeCourse tools to help you brainstorm ideas and resources!

NEW VIDEOS: Hearing and Supporting McKenzie

An Employment and Community First CHOICES story

What does it look like when someone with a developmental disability gets the support they need to lead their own vision for a good life? 

McKenzie Tuckson's life is full of choices, on everything from where to eat (her favorite restaurant, Doll's, of course!) to whether to ride the bus to where to work and her plans for the future.

The Employment and Community First (ECF) CHOICES program offers support and tools so McKenzie can make and communicate her choices for a good life. 

  • "Hearing McKenzie": See how getting support to communicate her choices allows McKenzie to advocate for herself and others.
  • "Supporting McKenzie": See how leading her plan for support to work and grow her independence sets McKenzie up for a bright future. 

Could you benefit from support in your home and community through ECF CHOICES? The program is enrolling new members now!

ECF can help you or your family:

  • Explore jobs that you might like
  • Connect to social and community activities
  • Get personal assistance or respite care to give caregivers a break
  • Help with transportation
  • Access many other kinds of supports and services

Now’s a great time to apply! Learn more and get started.

Send us your art for our Breaking Ground magazine

Every year, the Council produces a special issue of our magazine, Breaking Ground, celebrating the creative work of Tennesseans with disabilities. We feature all kinds of artwork and writing, as well as articles about inclusive arts programs across the state.

Explore last year's issue, including videos from featured artists, here.

If you:

  • create any kind of visual art
  • take photos
  • write poetry, creative essays, or stories
  • make crafts
  • engage in other artistic activities

... send us your work! We can consider written work up to 1,000 words and up to 3 pieces of visual artwork.

If you act in plays, play instruments, sing, or dance, feel free to send us photos of yourself doing those activities, too.

If you know of arts programs or groups leading great inclusive activities for folks with and without disabilities, please let us know!

Send your work and ideas by email to tnddc@tn.gov before January 15, 2023. Please include:

  • your name
  • where you live
  • a brief bio

It is important to us to celebrate work by artists from all kinds of diverse backgrounds, with all types of disabilities, and all sorts of life experiences. Please help us spread the word in your networks about this opportunity!

Questions? Email us at tnddc@tn.gov.

Get to Know a Leader: Tiffany Ramsey, Vocational Rehabilitation Services Director, Division of Rehabilitation Services, TN Dept. of Human Services

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities. Meet Tiffany Ramsey, the new director of Vocational Rehabilitation services at the Dept. of Human Services.

Vocational Rehabilitation (VR) provides employment-focused services for people with disabilities including job placement, school-to-work programs, guidance and counseling, transportation, personal care, technology, and more.

Tell us a bit about your career background and your current role.

I began my journey with the Vocational Rehabilitation (VR) program in May 2011. Over the years, I served in various positions within the VR program. Most recently, I was the East TN Area Director. In this role, I provided leadership and oversight for the 34 counties in East Tennessee. I have experience working with Transition School to Work programs, Community Tennessee Rehabilitation Centers, and providing a range of VR services to Tennesseans with disabilities.

I hold a Bachelor of Arts in Philosophy and Master of Science in Counseling degrees from the University of Tennessee, Knoxville. My Master of Science degree in Counseling is with a concentration in Rehabilitation Counseling. I have been a Certified Rehabilitation Counselor (CRC) since 2010. I am also a Ph.D. Candidate in the Learning and Leadership Doctoral Program at the University of Tennessee, Chattanooga. In May 2017, I graduated from the first class of the Council's Leadership Academy for Excellence in Disability Services. 

As the VR Director, I am responsible for the planning, organizing, directing, and overall day-to-day administration of the program. I lead a diverse team of almost 350 staff statewide. These employees:

  • Help me run the program
  • Provide employment services to people with disabilities
  • Educate employers about hiring people with disabilities
  • Support students with the transition from high school to adulthood

What is one thing you’re working on right now that you are excited about?

In VR, we are always building and fostering partnerships with schools, community providers, employers, and other state agencies.

One partnership is with the TN Department of Mental Health and Substance Abuse Services. We work with them to provide Individual Placement and Support (IPS) services to people with serious mental illness. IPS is an evidence-based practice for helping people with serious mental illness find good-paying jobs in their communities alongside others without disabilities. I am excited about the expansion of the IPS program across Tennessee. This expansion will allow VR to help more people to reach their employment goals. 
 
What is one of the biggest lessons you have learned from working on growing employment for Tennesseans with disabilities? 

The biggest lesson I have learned is where there is a will, there is a way. By this, I mean if someone has the desire to work, then they can work, and their job should be in a field they enjoy and located in their community.

We have so many resources and technological advances in today’s world to help our VR customers in achieving their career goals. We just need to think creatively and help people find their right path to employment.
 
What are some activities you enjoy doing in your free time?

I love spending time with my nephews, Daniel and Evan, and my niece, Lizzie. Also, I truly love the Smoky Mountains and visit often with my husband, Josh. We enjoy taking time to observe the beautiful scenery God has created.
 
When should members of the disability community reach out to you or your team directly?

Members of the disability community should reach out to my team any time they want to learn more about Vocational Rehabilitation Services in their area. Also, they can call phone number (833) 751-0597 to schedule an appointment to apply for services.

TennCare update: look for your "Tri-Star" letter

  • Background:
  • What to know if you or your family member gets TennCare:
    • TennCare is now sending out letters with the Tennessee Tri-star (3 part star) on it. This will not affect your coverage, but it is important that you let TennCare know if you don’t receive a letter by mid-December. This may mean that TennCare has the wrong address for you.
    • If you or your loved one gets SSI (Supplemental Security Income) your address is managed by the Social Security Administration, NOT TennCare. You don't need to look for a letter.
    • If you don’t get SSI and you do not receive a letter by mid-December call TennCare at 855-259-0701 or check online at tenncareconnect.tn.gov to make sure that your address and all other contact information is right.

Frequently asked questions:

When will I get my letter?
Some Tristar letters were already sent out. TennCare will keep mailing letters to more members throughout the next two months (November and December).
 
Do I need to do anything when I get my letter?
No. You just need to be on the lookout to make sure you get one.
 
What if I DON'T get a letter by mid-December?
Contact TennCare right away. Call 855-259-0701 or check your address on the TennCare Connect website. (If you receive SSI, you may not get a letter because your address is managed by Social Security, not TennCare.)
 
What can advocates do?
Let TennCare members know about the Tri-star campaign. Share TennCare's social media posts about this effort to spread the word.

New MAPs program for Tennesseans with disabilities now accepting applications

Enrollment for the new MAPs (Medicaid Alternative Pathways to Independence) program began on November 1.

The first phase of the program is focused on serving people who live in Middle TN.

MAPs is a program for people with intellectual or developmental disabilities who want to be more independent at home, at work, and in their community. MAPs is a different approach to supports for independence and work skills. It uses technology as a foundation. The program is offered through the TN Department of Intellectual and Developmental Disabilities (DIDD).

If you do not live in a Middle TN county, you can still apply now. DIDD will keep your application and reach out to you once the program begins offering services in your region.

Learn more about the program by watching this short video or visiting DIDD's MAPs webpage.

October 2022

View the original email campaign with photos.

From the Council's Chief Public Information Officer

Dear readers,

October is a big month in the disability community. If you’re part of the Down syndrome community, as my family is, you know that October is Down Syndrome Awareness Month. We’ll be celebrating this Saturday at our local Extra Mile walk.

October is also National Disability Employment Awareness Month. It’s a mouthful – but it’s also an important time. October is a chance for us to talk about the unique strengths each of us bring to the workplace – including people with disabilities.

The Council has joined disability organizations in our state in the #HireMyStrengths social media campaign. You can see those posts on our Facebook and Twitter pages. Want to join in? Just follow the steps listed on the Hire My Strengths web page! We’d love to see the strengths YOU bring to the workplace.

Tennessee has been an Employment First state since 2013. That means our state services work to support people with disabilities in meaningful employment. The result is that more people with disabilities are doing real work for real pay. The Council is proud to play a role.

We helped set a statewide goal several years ago: to shrink by 5% the gap between employment rates for people with and without disabilities. Even with the COVID-19 pandemic, our state has now reached that goal – TWO YEARS EARLY!

We know there is a lot more work to do to make sure every person in Tennessee can live their career dreams. This month is a great time to recommit to that work. If you’d like to get involved, we’d love to hear from you! Contact us any time at TNDDC@tn.gov.

Happy fall!

Jolene Sharp
Chief Public Information Officer

New Council Executive Committee Members: Sarah Cripps and Edward Mitchell

Two of our Governor-appointed Council members are taking on new leadership roles. They each now chair one of our Council committees. That also means they serve on the Council Executive Committee. The Executive Committee is a group that often makes decisions about Council funding and priorities.

Sarah Cripps (Smithville; Upper Cumberland development district; pictured at left below) became the chair of our public policy committee.

Edward Mitchell (Jackson; Southwest development district; pictured at right below) became the chair of our communications committee.

We asked Sarah and Edward to share about their roles and why they are passionate about this work.

Tell us about your role as the chair of your committee.

Sarah: As the Chair of the public policy committee, I am tasked with leading each quarterly meeting of the committee. I help facilitate discussion during each meeting about ideas for public policy proposals and projects of Council members.

Edward: The communications committee is an essential component of the DD Council's external communications. It works to raise the organization's visibility in the public eye. It is the duty of the committee chair to:

  • preside over committee sessions,
  • record the conclusions of the committee, and
  • present those findings to the whole council.

It is absolutely necessary for whoever is going to be serving in the position of the chair to have a strong speaking voice and solid presentation skills.
 
Why is this role important to you?

Sarah: My role as Chair of the public policy committee is important to me because we have seen the power of individuals to influence public policy. That happens through both the passage of legislation and various Council members’ working in tandem with state agencies to improve the lives of Tennesseans with disabilities and their families. It is important to me that persons with physical, intellectual, and developmental disabilities live as independently as possible.

Edward: As a person who has lived experience as a person with a disability, one of the most concrete ways that I can contribute to the accomplishment of the purpose of the DD Council is to serve as the chairperson of a committee. 
 
Your role as a committee chair also means you serve on the Council’s executive committee. What are your responsibilities as an executive committee member?

Sarah: As a member of the Council's executive committee, my top priorities are to attend the monthly meetings, to become more involved in the Council’s long-range planning, and to increase my knowledge about the inner workings of the Council, its ongoing programs, and daily operation.

Edward: As a member of the executive committee, it is my responsibility to help with the Council's work in the most effective manner possible. In the time between meetings of the DD Council, as well as in times of emergency or other time-sensitive situations, the executive committee acts as a decision-making group.
 
What do you hope your impact will be in this new role on the Council?

Sarah: I am humbled to have been selected to serve as a member of the executive committee. I bring both my own personal experience as someone with a disability as well as my legal knowledge with me to my position. I am eager to support Council staff in their tireless efforts to improve the daily lives of Tennesseans with disabilities and their family members.

Edward: It is the greatest privilege of my life to be able to serve as a representative for people with disabilities. As a member of the Council, you can count on me to serve with enthusiasm, care, attention, and honesty. I want to make sure that the voices of those who have lived experiences of disability are heard in every facet of our community improvement efforts. I want to contribute any and all ideas from those who have lived experiences.

Get to Know a Leader: Muriel Nolen, Executive Director, TN Human Rights Commission

We like to introduce our readers to different leaders of agencies and programs that impact Tennesseans with disabilities. Meet Muriel Nolen, the new executive director of the Tennessee Human Rights Commission.

The Commission educates Tennesseans about their human rights and helps enforce laws related to protecting people from different kinds of discrimination. Read a brief explanation of their work and their role in the state here.

Tell us a bit about your career background and your current role.

I knew from a young age that I wanted to be a lawyer. Since I can remember, my family and friends have told me that I should become a lawyer when I grow up. Maybe it was because I would debate and argue for sport about all sorts of topics. I found it interesting and challenging to weigh in on and explain opposing viewpoints. I have 20 years of trial experience, largely in criminal prosecution and law enforcement but also some family law.  

My current position as Executive Director of the Tennessee Human Rights Commission enables me to use a collection of abilities I've acquired over the course of my different positions in state government, which began with the Hamilton County District Attorney General's Office in 1997. 

What is one thing you’re working on right now at the Commission that you are excited about? 

Our agency has overcome the challenges of the pandemic and a most recent transition of leadership to become more productive and efficient than before. We have a strong, competent, and dedicated team that is committed to serving our citizens and achieving the mission of the Tennessee Human Rights Commission, which is to safeguard individuals from discrimination through education and enforcement.  

We've made significant progress over the past six months, including going "paperless." But I'm most excited with our preparation to expand our education and outreach projects and create a new unit that provides anti-discrimination training needs for other state agencies and businesses. 

What is one of the biggest lessons you have learned from working on issues related to disability discrimination in housing, employment, and public accommodations? 

Discrimination based on a person's disability is still a serious problem in our communities and across the state. In fact, 48% of the Commission’s housing complaints in 2022 were based on a person's disability. This number was twice as high as the 21% of housing complaints that were related to race.  

I often remind my team that you never know what the person on the other end of the phone line or seated across from you at a table is going through. We must be careful not to deepen any harm that’s already been caused by other people or entities that brought them to us in the first place. 

What are some activities you enjoy doing in your free time? 

Free time?  What’s free time? Kidding. I'm attempting to strike a balance between my new position as Executive Director of a state agency and the rest of my life because, strangely, my job doesn't feel like work because I enjoy it. 

My husband and I are recent empty nesters and we’ve come to the realization that we need to “get a life." However, I truly enjoy cooking and listening to music whenever I get the time. Nigerian-style oxtails, jerk lambchops, and lasagna are a few of my specialties.  And interestingly enough, I used to moonlight as a D.J. when I had actual free time. And no, I will not reveal my stage name. 
 
When should members of the disability community reach out to you or your team directly? 

When members of the disability community feel we can help, inform, or educate them—or, of course, investigate complaints and other potential instances of discrimination—they should get in touch with our office. We are aware that local, state, and federal laws can be convoluted and intimidating. It's our responsibility to eliminate guesswork. It's never harmful to call and ask questions. That is the reason we are here.

Visit one of our four locations across the state, in Chattanooga, Knoxville, Memphis, or Nashville. Our website, https://www.tn.gov/humanrights, lists the addresses as well as other important information.  Call 800-251-3589 or 615-741-5825 to speak with us or send an email to ASK.THRC@tn.gov. We will respond to all public communications unless you are contacting us to advise us about the extended warranty on our car.

11/1 - New MAPs program for Tennesseans with disabilities starts accepting applications

Enrollment for the new MAPs (Medicaid Alternative Pathways to Independence) program begins on November 1, 2022!

The first phase of the program will focus on serving people who live in Middle TN.

MAPs is a program for people with intellectual or developmental disabilities who want to be more independent at home, at work, and in their community. MAPs is a different approach to supports for independence and work skills. It uses technology as a foundation. The program is offered through the TN Department of Intellectual and Developmental Disabilities (DIDD).

If you do not live in a Middle TN county, you can still complete the application on November 1. DIDD will keep your application and reach out to you once the program begins offering services in your region.

Learn more about the program by watching this short video or visiting DIDD's MAPs webpage.

Learn about: Employment and Community First CHOICES

Have you heard that TN recently expanded funding for the Employment and Community First CHOICES program? Through new federal and state funding, the program now serves more than 5,400 Tennesseans with intellectual and developmental disabilities.

This program, often called "ECF CHOICES," is the main way that Tennessee provides long-term services and supports to people of all ages who have intellectual and developmental disabilities. ECF can help you or your family:

  • Explore jobs that you might like
  • Connect to social and community activities
  • Get personal assistance or respite care to give caregivers a break
  • Help with transportation
  • Access many other kinds of supports and services

Watch our video of a young man named Bryshawn who gets ECF CHOICES services talk about how the program helps him live a good life.

Want to learn more or apply for help? Now’s a great time! Click here to get started.

September 2022

View original email with photos here.

From the Executive Director's Desk

Readers,

We have some exciting updates for you in this issue, including new Council members! As you’re reading this, we are gathering for our quarterly Council meeting in Nashville. Earlier today, new members attended orientation and our full membership will meet for dinner. Tomorrow we will have our typical business meeting. You can read meeting minutes and find information about visiting Council meetings on our website.

I also want to share that last weekend we launched of our Partners in Policymaking 2022-23 class. After hosting this program virtually for the past several years, it was extra special to be in person and see the connections made among scholars.

Learn more about Partners in Policymaking here.

We want to hear from you as you read these newsletters – let us know what resonates with you.

Wishing everyone a great week,

Lauren

Meet our New Member: Kimberly Boyd, Northwest TN Development District

Kimberly Boyd was recently appointed by Gov. Bill Lee to represent the Northwest Development District on the Council. She has a 12-year-old son, William, who goes by “Ty.” Ty has autism and is the recipient of a kidney transplant. Kimberly works for Amerigroup as the Employment and Community First CHOICES member advocate for the west TN region. She first became involved in the disability community when working as an Independent Support Coordinator in 2007.

Kimberly and Ty live in Martin with their toy poodle, Sophie. Kim's main areas of interest related to disability are increasing access to appropriate public education, support services, and health insurance. Right now, she also serves on councils related to the TARP Center for Independent Living in Paris, TN. She loves decorating, traveling, and spending time with family and friends.

Meet our New Member: Sara Miller, Southwest TN Development District

Sara Miller was recently appointed by Gov. Bill Lee to represent the Southwest Development District on the Council. Sara was born Deaf and says she became an active participant in the disability community when she began her teaching career in Deaf Education in 2008. In 2019, Sara founded her business, Language Priority, to design apparel and merchandise focused on ASL (American Sign Language) and the Deaf community. She also teaches online ASL classes.

Sara and her husband, Bryce, live in Jackson with their 2 dogs, one of whom is also deaf. She is passionate about accessibility to information, education, and communication. She shared, “I want to be a part of the change on behalf of the disabled community in Tennessee. I hope to use my lived experiences and those of others to help make changes for the better!”  Sara loves reading, drawing, and creating designs for her business.

Meet our New Member: Bliss Welch, Southeast TN Development District

Bliss Welch was recently appointed by Gov. Bill Lee to represent the Southeast Development District on the Council. Bliss became a self-advocate during her teen years when diagnosed with Limb Girdle Muscular Dystrophy 2B/R2. During her reign as Ms. Wheelchair Tennessee 2013, she said she “developed a greater understanding of the need to advocate for change in policies so individuals with disabilities are viewed and treated as equals in society.”

Bliss and her 10-year-old daughter, Annabelle, live in Harrison, TN. Bliss works as an Accounts Specialist at Island Cove Marina & Resort. For the past decade, she has served as a volunteer for the Ms. Wheelchair Tennessee organization to empower other wheelchair-mobile women to find their voices and advocate. She also serves as the Chairwoman for the “Harvesting Inclusive Play” committee in Chattanooga, a group partnering with the City of Chattanooga and the Kiwanis Club of Chattanooga to raise funds for a universally inclusive playground.

2022-23 Partners in Policymaking Scholars Begin Training

Congratulations to our newest Partners class! 

  • Heather Bensch - Ripley
  • Drake Box - Dyersburg
  • Becca Brnik - Cleveland
  • Garrison Buchanan - Johnson City
  • Lacey Bundrum - Oak Ridge
  • Colleen Campbell - Madison
  • Sarah Clinton - Nashville
  • Olivia Crossman - Nashville
  • Swathi Dasari - Brentwood
  • Monica Everett - Cordova
  • Barbara Goodrum - Paris
  • Megan Haynes - Knoxville
  • Jennifer Hout - Franklin
  • Gregory Hutchins - Murfreesboro
  • Kevin Krieb - Christiana
  • Nidhi Mali - Memphis
  • Alexis May - Milan
  • Katie Moore - Jackson
  • Lia Nichol - Powell
  • Edel Pace - Lebanon
  • Justin Ralls - Greenfield
  • Lindy Register - Bells
  • Sidney Roark - Oak Ridge
  • Michael Slowik - Knoxville
  • Lorraine Wakefield - Elizabethton
  • Dr. Sharon Webb - Memphis
  • Fleur Whitehead - Clarksville

This 29th Partners class kicked off last weekend - in person for the first time since the pandemic! Over the two-day session, these new scholars learned about themselves and each other and dove into the history of the disability rights movement. 

Over the next few months, the class will continue to meet virtually. The scholars will learn about all aspects of Tennessee's disability service system. They'll learn how to help shape policies that affect the lives of people with disabilities. And if past years are any sign - they'll also form a tight-knit village of support and encouragement that will last long after their graduation in April. 

Huge thanks to Cathlyn Smith, our Director of Leadership Development, for her excellent and compassionate work guiding our scholars through these months of learning that changes lives. 

Get to Know a Leader: Katie Moss, Chief of Long-Term Services and Supports, Division of TennCare

We like to introduce our readers to different leaders in TN's disability field. Meet Katie Moss, Chief of Long-Term Services and Supports with the Division of TennCare, our state's Medicaid agency.

Tell us a bit about your career background and your current role at TennCare.

I am honored to have been recently appointed by Director Smith as the new Chief of Long Term Services and Supports for the Division of TennCare; a role I never dreamed I would have.

When I started college, I planned to become a geriatric doctor who made house calls. After a semester of organic chemistry, biochemistry, and physics, I decided that was not the right path for me. I changed to social work and started an incredible internship at Legal Aid in Knoxville. Then I decided to apply for law school. I went to the University of Tennessee College of Law so I could graduate and work at Legal Aid. I moved to Nashville for a position at Legal Aid Society (LAS) and worked there for about 7 years. My work focused on issues related to health and benefits, such as Medicaid, Medicare, Social Security benefits, and benefits like food stamps (now called SNAP) and Families First. During my time at LAS, I worked on several cases related to long-term care and TennCare in federal court as well as the Tennessee Court of Appeals. Although the work was fulfilling, it became clear to me that litigation was not going to result in real change.

In 2015, I had the opportunity to join the TennCare Office of General Counsel. I was fortunate there to gain a much deeper understanding of the TennCare program. Patti Killingsworth asked me to join the LTSS office in 2021 as her deputy. That was probably more shocking to me than it was to anyone else. I am so thankful for her support, encouragement, and confidence in me to follow in her footsteps.

What is one thing you’re working on right now that you are excited about?

There are SO many exciting things we are working on right now at TennCare (not just LTSS):

  • Expanding dental benefits to all adults
  • Moving to a new software system called PERLSS for all LTSS. This will eventually end the need for all other systems for LTSS medical decisions. It will be the single source for processing LTSS medical eligibility and appeals. Having a single system that links to TEDS (the financial system) will make it easier for our members to go through the process for eligibility or to file an appeal.  
  • Bringing together the 1915(c) waivers and the Employment and Community First CHOICES program. This will make offering these programs easier for providers because they’ll have only one process to go through to be approved instead of separate processes for each program. It will also be easier to run the programs because they’ll be managed through the same system.
  • Working on all of the new programs funded through the American Rescue Plan Act funding. This includes a workforce development program that will help providers hire and keep good employees.
  • Partnering with sister agencies, organizations and other groups to build relationships and improve the experience for the people we support.

It’s hard to pick just one! From the perspective of impact for real people, I think Enabling Technology (ET) has the greatest potential to be a game changer. Not only can ET help people be more independent than they may have believed was possible, it also could help with the workforce crisis. We have several providers who have been accredited as Tech First organizations that are doing amazing things.

What is one of the biggest things you have learned from working with Tennesseans with developmental disabilities and their families?

I have learned that they are incredible and passionate advocates. That is saying something coming from a lawyer who considers herself a tenacious advocate!

What are some activities you enjoy doing in your free time?

I love spending time with friends and family, trying to garden (usually unsuccessfully, but if anyone needs some mint, I think it’s about to overtake my yard), hosting play dates for the kids or reading a good book (not of substance…think Janet Evanovich) in my hammock. Pre-COVID, I hosted parties: Halloween parties with a chili contest or Christmas cookie decorating parties for kids. I can’t wait to get back to that at some point.

When should members of the disability community reach out to you or your team directly?

I love hearing from families, individuals and providers! I welcome emails with questions, comments, concerns, or suggestions any time! Feedback is what allows us to improve and better serve individuals. Feel free to email me at katie.moss@tn.gov, but my staff are the subject matter experts in their programs, so working with them directly is usually the better option.

TDOT Becomes Newest Funder for TN Disability Pathfinder

 The Tennessee Department of Transportation (TDOT) is joining 7 other state government agencies in guiding and funding Tennessee Disability Pathfinder. Pathfinder is a one-stop center for finding disability information and supports. Because of Pathfinder, Tennesseans can bring nearly any disability question to Pathfinder’s searchable website or phone line and get help finding what they need. We are one of very few states to offer this type of center.
 
The Council is a founding investor in Pathfinder. We brought these 8 newer funding agencies together to increase investment in Pathfinder. Pathfinder is operated by the Vanderbilt Kennedy Center.
 
Why does this matter?

  • Transportation comes up often as a top disability need (more on that below). TDOT launched the Office of Accessible Transportation and Mobility just a few years ago to study and work on barriers. TDOT has seen that a key barrier for people is having trouble finding services that already exist. This led the department to invest in Pathfinder. Increased funds will help link more Tennesseans with disabilities to transportation services.
  • People with disabilities and their families report struggling to find help with all kinds of disability-related needs. It can be hard to know what programs are available or where to find them. Pathfinder is a central place to connect to thousands of different services.
  • Increased funds pay for more Pathfinder staff and outreach. This allows Pathfinder to help more people with all kinds of disability needs.

 Where is Pathfinder now?

  • Increased funding paid for a major upgrade to Pathfinder’s website last year. The new site is organized by life stage and has many new features. This makes it easier for families and professionals to find the disability resources they need. If you haven’t visited Pathfinder in the last year, go see the upgrades for yourself!
  • Another recent improvement with the site upgrade: service providers can add themselves to Pathfinder or make updates to their listing. If you offer disability services, make sure you’ve taken this step so people can find your services.
  • In the past fiscal year, Pathfinder served:
    • 11,000+ people total through its website, phone helpline, and trainings
    • 8,100+ website visitors
    • 4,800+ social media followers

 What’s ahead for Pathfinder?

  • New funding also paid for an in-depth study by Vanderbilt researchers. The study showed what issues matter to the disability community and how people want to find disability information. That research is now guiding improvements to Pathfinder, including a new strategic plan. This will help Pathfinder grow and serve even more people in the years to come.
  • The Vanderbilt study showed in more detail what our own public input surveys have said – that accessible, affordable transportation is a top need for people with disabilities. This makes the addition of TDOT to the Pathfinder leadership team a critical addition.

 Who is the Pathfinder leadership group?

  1. The Council on Developmental Disabilities
  2. Vanderbilt Kennedy Center
  3. TN Commission on Aging and Disability
  4. TN Dept. of Education
  5. TN Dept. of Intellectual and Developmental Disabilities (DIDD)
  6. TN Dept. of Health
  7. TN Dept. of Human Services, Division of Rehabilitation Services
  8. TN Dept. of Mental Health and Substance Abuse Services
  9. TN Dept. of Transportation

All these agencies offer programs that serve people with disabilities. Together, the leadership group is making sure Pathfinder’s database and help line staff stay up-to-date. The group connects Pathfinder staff with state agency staff who know the most about their own programs. This allows Pathfinder to be the true expert in all areas of Tennessee’s disability services system. All agencies are learning that any time we get a question or need we can’t answer, we can refer people to Pathfinder.
 
Bottom line: If you or anyone you know needs disability information or services, TN Disability Pathfinder is your go-to! Connect on Instagram, Facebook, and Twitter for information and news about how Pathfinder is growing.  

August 2022

View original email with photos here.

From the Executive Director's Desk

Readers,

We hope you all had a great summer. Many of us are in “back to school” mode. In this edition, you will read about recent policy changes in Tennessee that affect students with disabilities, which we have been following all summer. Be sure to tell us your questions and thoughts on this topic. We are constantly learning from your perspectives and experiences.

We recently gathered with educators, state agency representatives, and Vanderbilt University’s Transition Tennessee teams. We were all there to discuss how we support students with disabilities preparing for life after high school. It was powerful to be together in person and in a school setting while talking about these issues.

I hope you will take time to check out the Center for Decision-Making Support, which shared a table with us at these events. Decision-making is the foundation of every other skill related to adult life. Until 2020, our state did not have a centralized resource to help students, parents, and educators navigate supports. At the transition events, we heard educators say things like: “This is exactly what we have needed for years!” It made us proud to have the Center for Decision-Making Support. Tennessee is the first in the nation to launch anything like it.

Lastly, we hope you’ll help us make sure all of the new adult-size changing tables grants are spent by this time next summer. Read on to learn how!

-Lauren Pearcy,
Executive Director

Back to school: Education issues we are watching

Students are headed back to school across the state this month. We wanted to tell you about some policy issues we’re watching closely as students with disabilities reenter the classroom.

First, a little about our role in education.
The Council on Developmental Disabilities works to improve education for students with intellectual and developmental disabilities by:

  • Providing reliable, accurate information
  • Learning about new best practices for inclusion
  • Engaging in solutions-focused advocacy

Our work is always informed by real-life experiences. Those come from our Council members, Partners in Policymaking graduates, and YOU - community members in our networks. We work with state agencies and community groups to inform families and educators and create meaningful change for students with developmental disabilities. 

There are several key education issues we're tracking this year.

Tennessee Investment in Student Achievement (TISA)
TISA is the new education funding formula that will take effect next school year. Even though we have another 12 months before it impacts schools, it’s a big deal. Education funding hasn’t been changed in Tennessee for the last 30 years.

At the beginning of August, the TN Department of Education’s public comment period about the new funding plan closed. (You can read what we shared with the department here, based on feedback from our members.) Now, they’re reading through the comments and finalizing the regulations that will take effect in 2023. We’re waiting to see those final regulations to understand exactly how students with disabilities will be impacted. Stay tuned to our weekly public policy news for more information.

Behavior supports for students
We have heard countless stories from our Council members, as well as other community members, about difficulties in getting appropriate behavior supports for students with disabilities. We have also heard some amazing success stories about what happens when students get the right support.

This will be the first full school year that a new regulation from the Department of Education is in place. That regulation sets out guidelines for what must be included in a Functional Behavior Analysis (FBA) and Behavior Intervention Plan (BIP). (Learn more on the TN Dept. of Education's special education behavior webpage here.)

We’ve also been tracking several legislative proposals that would punish students who need behavior supports, including criminalizing the behavior of many students with disabilities. We’re concerned these proposals may unintentionally harm students and their families. We’ve also heard stories that some students with disabilities are being removed from their classrooms more frequently. Research shows us that when educators are supported with the right tools to deliver the right kinds of behavior supports for students with disabilities, many students thrive in inclusive classes with their peers.

If you have stories about behavioral supports for your child/student with disabilities, please share those with us. We want to hear both the positive and the negative stories:

  • problems with getting the services your child needs,
  • being removed from their classrooms or dismissed early,
  • AND successes where your child is getting the right kind of support.

All these stories help us better understand what is going on in schools for TN students.

School staffing shortages
We’re following stories about staffing shortages in schools, both among teachers and paraprofessionals. There are hundreds of job openings across the state. We’re waiting to see how students with disabilities will be impacted once they get back to the classroom. Our hope is that districts can find a way to bring teachers back and provide meaningful supports and services in the meantime – no small task.

Every school year brings a new set of challenges, as well as opportunities, to be addressed by the community. Your stories help us better understand the issues and find the right policy solutions for students and families. Email us anytime at tnddc@tn.gov.

In addition to our newsletters and social media, connect with our partners who work on education issues for students with disabilities, like:

Council Member Spotlight: Allie Haynes, Rural Health Association of TN

Starting this year, the Rural Health Association of TN (RHA of TN) will be represented on our Council as our nonprofit agency partner. Allie Haynes, Membership Manager at RHA, will be attending our Council meetings and sharing information about their work. Read below about Allie and our new partnership.

Tell us a bit about your background and your current role at RHA.

I am the Membership Manager at the Rural Health Association of Tennessee. I have been with RHA of TN for a year, and I have greatly enjoyed advocating and learning more about rural healthcare. 

My role is outreach to our members and to spread awareness about what we do at RHA of TN. I received my bachelor’s degree in Sociology from the University of Tennessee at Knoxville, and I went on to serve in the Peace Corps as a Youth in Development Volunteer. I have a fifteen-year-old brother who has Down Syndrome, so advocating for both access to rural healthcare and access to programs for those with disabilities is very important to me.

Tell us a bit about the Rural Health Association. How is RHA working to improve rural healthcare for people with disabilities and their families?

The Rural Health Association of Tennessee (RHA of TN) is a not-for-profit 501(c)(3) organization of people and organizations committed to improving the health of rural Tennesseans. Our members are rural health care providers, school health professionals, and others who care about rural health work to affect positive change in the health and well-being of all rural people in Tennessee.

Our mission is to lead the way for a healthy Tennessee through partnerships, advocacy, education, and resources. Our advocacy focus includes addressing:

  • access to care and declining life expectancy in rural communities,
  • rural healthcare workforce shortages,
  • and investing in a strong rural safety net.

We serve as a healthcare resource. We now help with insurance, including enrollment in TennCare, Medicaid, Medicare, SNAP, and more.

What do you enjoy most about your work?

I enjoy connecting with our members and learning about the challenges they are facing. It is no secret that healthcare professionals across the board are facing a broad array of challenges, from hospital closings to funding to workforce shortages. By finding out the problems, we can move toward helping relieve that stress through advocacy and education.

How do you think connecting with the Council will be beneficial to RHA’s work?

By working with the Council, RHA of TN hopes to bring more awareness to programs accessible in rural communities to those with disabilities. Rural counties often have a lack of resources and access to care, but that does not mean there are no available resources. By sharing the knowledge of the Council, we hope to share the resources available for families with disabilities in rural areas.

Get to Know a Leader: Kendra Thomas, TN Dept. of Health

We like to introduce our readers to different leaders in TN's disability field. Meet Kendra Thomas, the Director of Integrated Systems of Services for Children and Youth with Special Healthcare Needs at the Department of Health.

Tell us a bit about your career background and your current role at the Dept. of Health.

I have been a Licensed Social Worker for the past 9 years and have served as a Mental Health Supervisor, Managed Care Specialist, Foster Care Coordinator, and Foster Care Social Worker. 

I currently serve as the Director of Integrated Systems of Services for Children and Youth with Special Healthcare Needs at the TN Department of Health, Central Office. I have the honor of serving youth ages 14-24 and families as well as overseeing two statewide emergency preparedness programs.

What is most exciting to you about your job?

The most exciting aspect of my job is watching our youth and young adults reach their goals and dreams. I enjoy engaging with them daily through several virtual platforms that are easily accessible. Several of our members have successfully transitioned into employment, post-secondary education, and mentorship for other youth. I love being a part of their journeys by writing recommendation letters and attending their virtual events. I look forward to attending in-person events with them in the future.

What is one of the biggest things you have learned from working with children/youth with disabilities and special healthcare needs and their families?

I have learned to always be open-minded and show support every hour of the day. It is vital to meet each individual where they are in life. If you support youth and families, they will support you.

What should the disability community know about the Youth Advisory Council?

The youth advisory council is designed for children and youth ages 14-24 with a special healthcare need. This includes physical, developmental, mental, emotional, or behavioral needs. YAC meets quarterly to discuss policies and events that impact their daily lives. The members also participate in countless trainings around IEP development, COVID-19 restrictions, transition services, and self-advocacy. Please contact me at Kendra.T.Thomas@tn.gov for additional information.

When should members of the disability community reach out to you directly?

Members of the disability community can reach out to me if they encounter youth and families that need assistance with transition resources, youth advisory council membership, emergency preparedness requests, or navigating the systems of care in Tennessee. This includes help with:

  • transportation
  • housing
  • mental health
  • financial
  • medical
  • education
  • post-secondary education
  • vocational rehabilitation
  • employment
  • legal services

I am a resource guru and will guide them in the right direction.

Silver Alert Program Helps Find Missing Adults with Disabilities

A mom is worried. Her young adult daughter with multiple disabilities and health conditions isn’t home and isn’t responding to texts or phone calls. The mom calls the local police department. She is told that her daughter hasn’t been missing for long enough to file a missing persons report. Where can the worried mom turn?

Maybe you’ve seen a Silver Alert pop up on your NextDoor app or the local news. You may know Silver Alert is a program to help locate missing persons age 60+. But this program under the Tennessee Bureau of Investigation (TBI) is also for missing adults (18+) who may be in danger or need help to return safely due to:

  • Intellectual/developmental disability
  • Physical disability
  • Dementia

What do I do if a loved one with a disability is missing?
If your loved one is missing and has a disability, ask your local police department to contact the TBI at 1-800-TBI-FIND.

The local police department will follow the steps to request a Silver Alert from the TBI. You will need to give information about your loved one. That may include a description, photo, and statement about your loved one’s disability or health condition.  

What happens once a Silver Alert is issued?
If TBI approves a Silver Alert for your loved one, the department will:

  • Create a poster and activate the Silver Alert on the TBI website.
  • Send the poster statewide to law enforcement, media, and social media platforms.
  • Activate the 1‐855‐ALERT‐TBI automated information line.

 What’s different about the Silver Alert system?

  • There is no required amount of time for your loved one to be missing before they can be reported for a Silver Alert. Your police department can request a Silver Alert as soon as you report the missing person to them.
  • The program is statewide. This means law enforcement and the general public across Tennessee will be on the lookout and will know why your loved one may be in danger. This may be important if your loved one travels outside the local area.
  • The 1‐855‐ALERT‐TBI information line allows anyone to call if they believe they’ve seen your loved one.     

What happens when my loved one is found?
Your local police department will call 1‐800‐TBI‐FIND to report that your loved one has been found. The Silver Alert will then be removed from the TBI website.
 
Who should I contact if I have more questions about Silver Alert?
Call 1-800-TBI-FIND and ask to speak with the Missing Persons Unit.

TennesseeWorks: Office of Mobility and Accessible Transportation

A few years ago, the Council began regularly bringing together state agencies and disability advocates to work on improving accessible transportation across the state. From that group, an idea emerged to create a new state office to oversee transportation for people with disabilities.

Read about how that new office has been studying transportation barriers facing Tennesseans with disabilities in this new TennesseeWorks blog. The blog talks about about the second annual report from the Office of Mobility and Transportation.

Via TennesseeWorks "Rise to Work" blog: Two years ago, in March 2020, the Tennessee General Assembly passed the Tennessee Accessible Transportation and Mobility Act. This legislation created a new office in the Tennessee Department of Transportation, the Office of Mobility and Accessible Transportation. It also required the new office to develop a mission and scope, a five-year strategic plan, and an annual report on mobility and accessible transportation in Tennessee. Now, the Office of Mobility and Accessible Transportation has been established in TDOT and recently submitted the second annual report about accessible transportation in Tennessee to the Tennessee General Assembly. Read the entire blog.

July 2022

View original email with photos

From the Executive Director's Desk

Dear readers,

During Disability Pride month, our team has set aside time to reflect on and honor disability history. Many of us watched a webinar together, “Disability Rights are Civil Rights: How the Civil Rights Movement Impacted the Disability Rights Movement.” The webinar featured Judith Heumann and other civil rights leaders.

I couldn’t help but think about the role of our founding law, the Developmental Disabilities Act. The DD Act was also passed in the 1960s. It was the first time we as a nation proclaimed that “disability is a part of the human experience.” This is the north star our field needed. It has guided Councils on Developmental Disabilities ever since.

Celebrating disability pride hits differently after I re-immerse myself in history. I picture the Council members we rely on to shape our work and their loved ones and I wonder how we ever underestimated them so tragically. I sat next to one parent during a disability history presentation this year. She leaned over to share, “I was told to institutionalize my daughter. And that was 1992.”

Knowing this sobering history makes me proud to be part of this generation. It also reminds me that future generations will cringe at ours. We have a long way to go, and that’s why Councils still play such a critical role today.

Read on to hear from our current Council members – both citizen and agency representatives – and timely policy highlights.

-Lauren Pearcy, Executive Director

Council Member Spotlight: Brent Wiles

Brent Wiles lives in Nashville and serves as one of the Council's at-large representatives, appointed by the Governor. Brent joined the council in 2019 after his youngest son George was born with Down syndrome in 2017.

What impresses me most about serving on the Council is getting to see the big impact that a relatively small group of involved individuals can have throughout state government and beyond. For decades, the Council has been a place where citizens, government representatives, and advocates come together to work to improve the lives of those with disabilities across the state.

I joined the Council not long after our son George was born, and I had little knowledge of the disability community and its many advocates. Whether it’s council members, the representatives of state government, university partners, or disability advocacy organizations, I’ve found a group that is committed to ensuring that people with disabilities have a voice and are not an afterthought.

Serving on the Council has helped educate me on various tools that are available to those with disabilities and their family members. I’ve been able to share information about Tennessee Disability Pathfinder with people, helped my wife set up a “buddy program” at our church to help children with disabilities participate in church activities, and shared our family’s experiences with council members and staff.

My goal is to continue growing my knowledge of disability issues through service on the Council so that I can better assist others in the years to come.

Get to Know a Leader: Jenna Martin, Director of Developmental Disability Services, TN Department of Intellectual and Developmental Disabilities (DIDD)

We like to introduce our readers to different leaders in TN's disability field. Meet Jenna Martin, who recently became the Director of Developmental Disability Services at DIDD.

Tell us about your previous background.

I started my career in the field of developmental disabilities at Independent Opportunities, Inc., supporting people as their Program Coordinator. After accepting a position in the Operations Department, I took the opportunity to apply and accept the Provider Support Team Coordinator position. I then became the Director of Operations position, and from there, the Deputy Director of Intake and Case Management at the DIDD Middle Tennessee Regional Office.

What is most exciting to you about your new position?

I have been fortunate in my career to be able to learn about most service options within home- and community-based settings. The TN Family Support program and the Autism Council were not areas I had been exposed to prior to this job. I am very excited to continue learning about both areas.

Can you describe a particular challenge or new opportunity you want to tackle in this role?

One thing Family Support providers have requested is a system to identify people who are receiving other funding sources. One of my main goals is to work with our Technical Support team to develop a system that will identify what services people are receiving. This will help our providers identify where we can assist people with additional supports from various programs.

The Family Support program received $1.03 million dollars in additional funding, and I am excited to see more families supported by the program than ever before, and some families receive more support than previous years.

For the TN Council on Autism Spectrum Disorder, I am happy to say that the committees just met on July 12, and they are all making efforts to improve the lives of Tennesseans with autism. We have some great ideas and action plans coming from those groups and it will be amazing to see what the Council accomplishes.

What’s something that has surprised you so far in your new role?

The amount of advocacy I have witnessed working with the TN Council on Autism Spectrum Disorder and with the Family Support Council is just incredible. I shouldn’t say that is a surprising thing, but it is incredible to see the passion behind each of these groups. I am happy to be a part of each of them.

When should members of the disability community reach out to you directly?

Both the Family Support Council and the TN Council on Autism Spectrum Disorder are quarterly meetings that are open to the public. If you have any interest in attending either or both meetings, please reach out and you will be added to our contact list. Information on how to attend either or both meetings is also included in the Public Meeting Notice published prior to each meeting.

You may also reach out to me any time you have questions about how DIDD might be able to assist you or someone you know at jenna.s.martin@tn.gov or 615-626-1579.

Tell local businesses to apply for adult-size changing tables funding

The TN Department of Intellectual and Developmental Disabilities (DIDD) will be providing $5,000 grants to 200 businesses and municipalities to install universal adult-size changing table in restrooms that are open to the public.

Adult-size changing tables allow people of all ages and abilities to access safe, dignified, and hygienic toileting experiences.

How can you help?

  1. Share the application link in your community with businesses and other public spaces that need a table.
  2. Connect with your local officials to identify public places like rec centers and parks. 
  3. Help get the word out on social media! You can share any of this information directly on your social media or search for DIDD's posts about the grants and share those.

Get Help with Costs of Disability Conferences, Trainings with our Scholarship Fund

Now is a great time to apply for financial help through our Scholarship Fund to attend disability or advocacy conferences and trainings!

Each year on July 1, we have new funding available to support Tennesseans with disabilities and family members of people with disabilities with the costs of leadership and advocacy training.

You can read more about our Scholarship Fund on our website here. Here are just a few upcoming national disability conferences you might explore - but you can always check TN Disability Pathfinder's event calendar for all kinds of disability conferences and trainings, including events that are free and those that cost money.

  • The Arc U.S. National Convention - Nov. 10-12, 2022, Denver, CO; A conference about a variety of disability issues for all disability community members (self-advocates, families and professionals)
  • Association of University Centers on Disabilities conference (AUCD) - Nov. 13-16, 2022, Washington D.C.; A conference for those interested in emerging research and best practices in the disability field
  • TASH conference - Dec. 1-3, 2022, Phoenix, AZ; A conference about a variety of disability issues for all disability community members (self-advocates, families and professionals)

Learn about new school funding formula, "TISA" 

The Tennessee Investment in Student Achievement Act (TISA) was passed by the General Assembly and signed into law by Governor Bill Lee on May 2, 2022. TISA is Tennessee’s new public-school funding formula. TISA replaces the 30-year-old “Basic Education Plan” (BEP).

The Tennessee Department of Education is now accepting public comment on the details of TISA. It's important that our community has good information on how TISA will change public school funding in Tennessee. We want you to know what that means for students with disabilities. 

We're grateful to the Tennessee Disability Coalition for partnering with us on plain language information about TISA. More information will be added in the coming days and weeks. Please follow the Council and the TN Disability Coalition on social media for updates. 

TISA 101 - How TISA Works

Explore new videos for the TN Center for Decision-Making Support

There are several new videos featured on the website for the TN Center for Decision-Making Support. These videos will help you learn about supported decision-making and how to use the Center's website. 

Some of the topics include:

  • Welcome to the Tennessee Center for Decision-Making Support
  • Decision-Making Supports vs Supported Decision-Making
  • The LifeCourse Exploring Decision-Making Supports Tool; and more!

TN's Center for Decision-Making Support, which launched in 2020, is joint project of the Council, The Arc Tennessee, and Disability Rights Tennessee. The Center’s goal is to provide easy to understand, accurate information about all decision-making support options for people with disabilities, in one place.

Explore the video library and other resources at www.tndecisionmaking.org.

June 2022

View original email with photos.

From the Executive Director's Desk

Dear readers,

You will read about leadership in this edition of our e-news, both inside and outside of state government. This is what I love about the Council: we are a rare entity that has a foot planted squarely in both worlds, so to speak.

I have been deep in that intersection over the past few weeks while attending the (in person!) Transition TN resource fairs across the state. We showcased our programs so that teachers can help families connect to opportunities. We pointed them to resources like our scholarship fund and Partners in Policymaking. The highlight for me was hearing our Council members who graduated from the Partners in Policymaking Program explain the difference it made for them.

We talked to teachers about other key resources we fund that can help them focus on the teaching part of their jobs. We showed them how to help students use TN Disability Pathfinder to find services and how to use the Center for Decision Making Support to answer questions about conservatorship and other decision-making options. It fills me up to see communities connect with statewide resources. Nothing can replicate an in person networking event. I’ve missed it.

If you care about someone approaching adulthood, we can talk you through the many programs available to help. Often, learning about what’s out there is the biggest hurdle. We’re here to help.

We hope you are all having a great summer.

Lauren Pearcy, Executive Director

P.S. At this half-way point in 2022, we’d love your feedback on changes we made to this newsletter this year. Can you take just 1 or 2 minutes to fill out this survey? Your input really does guide how we communicate!

Council Member Spotlight: Alicia Hall

Alicia Hall is one of our Governor-appointed Council members for the Memphis Delta Development District. She serves as the chair of our audit committee and graduated from our Partners in Policymaking® Leadership Institute. She also serves on committees for the National Federation of the Blind, the TN Dept. of Intellectual and Developmental Disabilities (DIDD) West TN Family Support Council, and the Memphis Advisory Council for Citizens with Disabilities.

She is passionate about disability advocacy because her son Gino II was born with a visual disability.

We want you to get to know our members better, so we asked Alicia to share with us about her leadership and advocacy efforts!

What do you think are the most important things you’ve learned through serving on the Council?
Alicia: The most important things I have learned through serving on the Council are:

  • I can have input on bills as they pertain to the disability community.
  • How to be an advocate.
  • If I have any questions or concerns I can reach out to the Council staff for guidance.

How has serving on the Council helped you advocate in your local community?
Alicia: I have always been some type of advocate most of my life. I always find a way to fight for the underdog. By serving on the Council, it has helped me advocate in my local community by reaching out to local and state government officials on concerns of the disability communities. It has also helped me become a mentor and help others become advocates.
 
How has serving on the Council helped motivate you to go deeper with your advocacy?
Alicia: Serving on the Council helped motivate me to go deeper with my advocacy by giving me a plethora of information on learning opportunities to broaden my knowledge and lighting the fire to do more.

I registered to be a student in the Vanderbilt Volunteer Advocacy Project (VAP) that starts August 15, 2022. VAP is a 12-week program to train people to become advocates for families navigating the special education process.
 
What are your advocacy dreams for the future?
My advocacy dream is to be a full-time advocate for the disability community. My near future goal is to become a student at the University of Memphis in Fall of 2022, pursuing a Bachelor’s degree in Social Work.

Third Class of TN Leadership Academy for Excellence in Disability Services Begins

Thanks to a brilliant idea from Council staff member Alicia Cone, Tennessee is the only state in the nation to offer disability-specific leadership training for state employees.

In 2015, Alicia had a light bulb moment: People in agencies across state government were serving citizens with disabilities. But none of those agency staff had access to learning on core disability issues and best practices. This led her to suggest what became the Leadership Academy for Excellence in Disability Services – or LAEDS. (View our video about LAEDS featuring graduates talking about its impact here.)

A new class of scholars just began this year’s LAEDS training, co-hosted with the TN Department of Human Resources. Class members are from 10 different state agencies:

  • Dept. of Safety
  • Dept. of Human Services
  • Dept. of Correction
  • Dept. of Transportation
  • Dept. of Education
  • Veterans Affairs
  • Dept. of Intellectual and Developmental Disabilities
  • Dept. of Environment and Conservation
  • TennCare
  • Dept. of Health

When we gathered for the in-person kickoff, this diverse group of state employees heard an overview of disability history by Dr. Bruce Keisling of the UT Health Science Center on Developmental Disabilities. It was powerful to watch the group process this information together, with all their different perspectives on today’s disability system.

The class will meet every other month through April 2023, building leadership skills AND knowledge of disability issues and resources. Sessions will focus on connecting across departments and systems. The end goal: skilled leaders who can together shape a service system that supports Tennesseans with disabilities to live their dreams.

Council Director of Leadership Development Cathlyn Smith says, “There are more than 150 service programs for people with disabilities in our state. This academy provides an opportunity for state employee leaders to come together and connect across those programs. They learn to identify where breakdowns in communication happen, what services may need updating, or where they can work together on new programs to meet the changing needs of people with disabilities. My hope is members of this new class will go back to their agencies with renewed eagerness, armed with the newest information and ideas.”

Members of the class will work over the coming months on team projects that propose creative solutions to a real-world problem in disability services. Members will present their projects to senior government leadership, including from the Governor’s office, at the end of the class.

The Council is proud to offer this chance to help grow Tennessee leaders in disability services. A member of last year’s LAEDS class summed it up well: “The efforts to bring about change require people to work together to solve problems and create solutions.”

Earlier this year, we finished a long-term study of the first LAEDS classes. The results showed a big impact on state employees. They reported changes in how they think about disability services . They were better able to find ways to work together across services after going through LAEDS. This study will be published in the International Journal of Developmental Disabilities, showing the importance of LAEDS as a national model.
  • “LAEDS helped us think differently. Every speaker offered something that drove home the shared goals we have.”
  • “I would not have my network in the disability field without LAEDS. And I reference research from our group project to this day.”
  • “LAEDS offered context to other disability services and removed the need to start at zero in terms of what each agency can do to help.” 

Get to Know a Leader: Tanika Arms, Director of the State as a Model Employer (SAME) program, TN Department of Human Resources

Hi, I am Tanika Arms and I have worked for the State of TN for 18 years, for several departments, mainly in Human Resource divisions. I currently work for the Department of Human Resources as the director of the State as A Model Employer (SAME) program.

The purpose of the SAME Program is to ensure that state agencies and departments use best policies, practices, and procedures for recruitment, hiring, advancement, and retention of qualified people with disabilities.

What excites me most about the about the SAME program is that it not only gives me the opportunity to continue to help state workers, but I am also able to show the citizens of TN with disabilities that the State of TN is making the necessary changes to be an inclusive and accessible place to work. We can be a model for other companies in TN.

This program is an opportunity to bring about cultural changes and social awareness around the employment of people with disabilities. SAME gives employees a voice to address ways that we can improve how we support employees with disabilities. To do this, we first had to get feedback from current state employees with disabilities. We did this in December 2021, when we sent out the "employee experience survey."

We also updated our human resources information system to allow state employees to voluntarily disclose their disability status in a simple and confidential way. We recently held the “This is Me” campaign kick-off event, which was centered around employee belonging. It highlights aspects of our identities that make us who we are and encourages voluntary disclosure of disability and veteran status. 

Everybody should be able to bring their full selves to work. I hope when they see other employees sharing their “This is Me” statements and stories, it will make employees feel comfortable to tell their own story. I hope employees will disclose their disability status in our Edison system and request an accommodation if one is needed. I hope job applicants will ask for accommodations they need both during the application and interview process and while on the job.
 
Below is my “This is Me” statement and a link to a couple “This is Me” videos and the video of William Arnold, who works for the Dept. of Labor and Workforce Development.
 
"Hi, I am Tanika Arms and I work for the Department of Human Resources as the HR Program Director for the SAME Program.  I currently live in Nashville, TN and I am a mother of two teenagers, and one of them has a learning disability.  I am also a black woman over the age of 40, who suffers from migraines. I am Tanika Arms, THIS IS ME and together we are One TN."

Precious Cargo Act: Privately Disclose Your Disability to First Responders, Law Enforcement

Did you know that Tennesseans can privately disclose their disability for use by law enforcement and first responders? If you want to disclose your disability and need for help, fill out this form from the TN Dept. of Revenue’s website and take it to your county clerk’s office.

If you need an accommodation or have questions, contact revenue.support@tn.gov.

Our Council member Martez Williams uses a wheelchair and needs canes to transfer out of his vehicle. “What happens if I get stopped by the police and ordered to get out of the car? If I reached for my canes, would the police officer think that I was reaching for a weapon?” The concern has plagued Martez, who has not wanted a public display of disability on his vehicle.

Last year, Martez worked with legislators to pass the Precious Cargo Act which allows Tennesseans to voluntarily and privately disclose to law enforcement and first responders the need for assistance with communication or exiting a vehicle.

May 2022

View full original email with photos here.

From the Executive Director's Desk

Dear readers,

Since our last newsletter, we held our first in-person Council meeting in over two years.

It was a truly joyous occasion. On top of celebrating our reunion, we got to celebrate several major accomplishments. The same day as our meeting, Council member Brigham Scallion helped accept a $300,000+ grant award from the TN Department of Intellectual and Developmental Disabilities (DIDD) to Dyersburg State. The grant will fund the state’s first inclusive higher education program at a community college.  Also the same day as our meeting, we got word that the General Assembly would invest $1 million in adult- size changing tables, one of the Council’s top priorities. (More in article below – read on!) All of us jumped to our feet to applaud and cheer this news. It was a perfect moment to be together in person.
 
Finally, we celebrated the service of Council members Jennifer Coleman (Northwest Development District) and Lesley Guilaran (Southwest Development District) as their terms come to an end this summer. Both of these women have had a profound impact on me, personally, during their time on the Council. The stories they were willing to share about their daily lives have had a direct impact on the Council’s priorities. They have impacted issues like:

Here are quotes from each member:

  • “The amount of growth I have experienced as a mom, a teacher, and as a person, I am not sure you can measure any of that growth that I have experienced from the Council, because it is so extensive.” -Lesley Guilaran
  •  “With all certainty I can say my time serving on the Council has been the most meaningful contribution I have made in my life so far.” -Jennifer Coleman

Later this summer, we’ll welcome new members to fill these spots. We recruit all year long in every area of the state to keep a pipeline of leaders in the disability community. If you know someone for us to meet, please let us know: Tnddc@tn.gov.

Lauren Pearcy, Executive Director

Changing Tables, Changing Lives

Tennessee is celebrating a huge disability policy win: The legislature just passed a state budget that includes $1 million dollars for adult-size changing tables. The money will fund grants for tables in 200 businesses and community locations.

It all started with one mom’s story.

Chrissy Hood is our Governor-appointed Council member from Pulaski. You may recognize her as the public face of Tennessee’s work for adult-size changing tables.

Chrissy didn’t know that’s where she was headed when she was appointed to the Council in 2019. She had a story, and she decided to share it with Lauren Pearcy, then the Council’s Director of Public Policy.

Lauren is now our Executive Director. “The issue of adult-size changing tables wasn’t on my radar,” Lauren says. “It just wasn’t something I’d experienced or even heard about. Chrissy spoke so powerfully about how the lack of adult-size tables affects her teenage daughter, Alaina, and their whole family. She talked about it as an issue of community access and basic dignity. As we brought the issue to the full Council, other members shared how they were also affected, or had seen the issue in their communities. Those who were not familiar, like me, instantly wanted to help. To our pleasant surprise, so did policymakers and businesses.”

The Council went to work.

It’s the magic formula of our Council: Members bring their stories. Staff bring expertise and resources to make sure those stories are heard where they can matter most. In 2020-21, our members met with their legislators. They met with local community leaders and businesses. They wrote letters we shared with policymakers. They appeared in videos. They wrote op-eds and talked to TV reporters. They researched details and brought us new ideas for outreach. The Council took out billboards and wrote a one-pager that spread across the state. The work was picked up by many of our Partners in Policymaking® scholars and graduates. Other disability organizations joined the effort and helped build awareness.

A bill was introduced in 2021.

Chrissy’s representative, Clay Doggett (R-Pulaski), was the House sponsor. Member Roddey Coe’s representative, Bo Watson (R-Hixson), was the Senate sponsor. In both cases, our members explained real-life experiences in their own communities. Their legislators were instantly supportive. The bill went through many changes, with lots of input from Chrissy, Roddey, and others over several years. Patience and persistence were key.

At the very end of the 2021-22 legislative session, just a few weeks ago, the content of that bill was passed as part of the state budget. In fact, the legislature DOUBLED the amount of money without being asked!

But there is more.

There were unexpected obstacles and victories along the way. For example, Council members worked with their local governments to get commitments from East Ridge, Smyrna, Pulaski, and Jackson for installing changing tables in public areas. Pulaski now has TWO adult-size tables in public buildings.

After seeing the Council’s video of Chrissy’s story, the TN Department of Transportation committed to putting adult-size changing tables in every rest stop and welcome center in the state, starting in the next few months. The TN Department of Environment and Conservation committed to putting adult-size changing tables in every state park as part of its Access 2030 project.

Thanks to community advocacy, local businesses and attractions like Smyrna’s new Freedom Inclusive Playground, the Adventure Science Center in Nashville, Vanderbilt Children’s Hospital, and Camp Jordan in East Ridge have added or are planning to add adult-size changing tables. 

What’s next?

The funds in the state budget will pay for 200 tables at $5,000 each. Tennessee businesses and community locations will be able to apply for a grant to help pay for adult-size changing tables in their buildings. The TN Department of Intellectual and Developmental Disabilities (DIDD) will manage the grant program.

Here’s what you can do:

  1. Start talking NOW to people in your community about the need for adult-size, height-adjustable changing tables.  Where does your community gather? That’s where adult-size changing tables need to be! It could be playgrounds, grocery stores, active faith communities, city buildings, shopping centers, theaters or concert venues – anywhere people go to be a part of life in your community. You can be the voice for greater accessibility in your neighborhood. Our website has information you can share about why this issue matters. We’re here to help – email us ideas for locations in your community!
  2. Watch this newsletter for details about how to apply for the grants. We’ll be sharing that information from DIDD as soon as they have the application process ready – likely by this summer.  
  3. Help us spread the word!  You can help make sure your community knows how to access these grants. Share the application link once it’s available with anyone who might be interested.

Tennessee is now the national leader on adult-size changing tables. With your help, every community in our state can offer access and dignity to people with disabilities, veterans, and aging adults who need a safe changing space.

Wanda Willis gets national award for work for people with I/DD and mental health needs

Wanda Willis served as Executive Director of our Council for more than three decades. Her impact in that role has been far-reaching. This month, she was recognized by a national organization for her work for people with both intellectual/developmental disabilities (I/DD) and mental health needs. 
 
Wanda was awarded the 2022 William I. Gardner Social Justice Award from the National Center for START Services (NCSS) at the Institute on Disability University Center for Excellence in Developmental Disabilities, University of New Hampshire.

The William I. Gardner Award is NCSS’s highest honor. Each year, the award recognizes a national leader who has promoted social justice to improve the lives of people with intellectual/developmental disabilities and mental health needs.
 
From the letter to Wanda:

“As a disability and family advocate and Executive Director of the Tennessee Council on Developmental Disabilities, your contributions over the years have helped to improve the lives of many with intellectual and developmental disabilities and their families both in Tennessee and across the country, including those with mental health needs.  Your knowledge and wisdom were demonstrated as you played a lead role with the TN-START pilot in 2004-2008, the first replication of the START model, and again when you led the DD Council to assist in the now-statewide implementation of TN START across the state of Tennessee in 2019. Wanda, you have been an invaluable colleague and supporter of our efforts.” 

– Joan Beasley, Director, National Center for START Services

We asked her about the award and her work on this issue. 

You can read more about TN START on the TN Dept. of Intellectual and Developmental Disabilities website here.

Interview with Wanda Willis

What does the award mean to you?
 
I was speechless and overwhelmed when I learned about the award from Dr. Joan Beasley, director of the National Center for START Services. It was an unexpected honor coming at the end of my 50-year career, 35 years as head of the TN Council on Developmental Disabilities.
 
How did the Council get involved in bringing START to TN? Why did you see it as important?
 
More than 20 years ago, the Council brought two divisions together: mental health services and the division of intellectual disabilities. It was a chance to learn about best practices for Tennesseans who had both disabilities – intellectual disability and mental health issues. This is often known as a “dual diagnosis.” The needs in this community are some of the most challenging in our state and across the entire country.
 
Joan Beasley was a national expert at the University of New Hampshire developing an approach known as START services ("Systematic, Therapeutic, Assessment, Resources & Treatment"). I was blown away by what I learned from Joan. I went to the training session expecting a psychology lecture and tools for writing a 30-page behavioral plan. What I learned was the most person-centered approach imaginable.
 
The START approach was to back up, look at what was going on around the person, look at physical health, look at the environment, look at the support team. Was there something that WE might be doing to create discord in the individual’s life? My experience on various behavior teams and on incident review boards over the years told me this would work. I felt it was the best, most respectful, and even empowering approach that professionals could take that would actually make a difference.
 
Tennessee launched a short-lived START program that lasted only a year. However, we now have an amazing program called TN START. It is led by the Dept. of Intellectual and Developmental Disabilities (DIDD). It has been carefully planned so it can keep going into the future. I last heard that 86% of people served in TN START avoided having to leave their homes to get treatment.
 
What do you most want readers to know about START?
 
START works. The approach is truly “person-centered.” START treats people with respect. It removes barriers that get in the way of a person’s success in the community, their education, job, and relationships.

START is based on my favorite principle – it’s us, not them. When we work on environmental factors, dive deep into physical history and health, offer opportunities equal to those for peers and siblings, and find a person’s interests and passions, we open doors to life experiences that all of us have. Not perfect, not without challenges, but opportunities to try.
 
What do you hope is the future for START in TN?
 
I believe the future of TN START is secure. It is already proving to be a centerpiece of our system in TN.
 
I look forward to closer partnership among:

  • TN START
  • the excellent employment services in TN
  • the amazing technology programs across departments
  • and, through the Council, with the many other nationally-recognized disability programs in TN.

That kind of connection will give the best opportunities to Tennesseans with disabilities and their families.
 
I am reminded daily by individuals and families that we have more to do and gaps to fill. Tennessee has long been recognized nationally for our ability to cross boundaries and work toward a shared vision. START and the people of Tennessee benefit when we work across agencies and programs to deliver the best we have to offer.

Get to Know a Leader: Jeremy Norden-Paul, Division of Program Innovation Director, TN Department of Intellectual and Developmental Disabilities

Some kids know exactly what they want to be when they grow up. I have friends who always knew they wanted to be a nurse or doctor, and others who were 100% sure they would become a teacher. I always envied people who felt so clear and confident about their futures. They seemed to have everything figured out and know exactly how they wanted to contribute to the world.

I was definitely not one of those people. When I was young, thinking about the future made me feel anxious and uncertain.

One big thing I have realized over the years is that no one really has their life completely figured out. Most of us are constantly trying to figure out what we want to be when we “grow up” because our lives and careers are constantly changing. That is part of what makes life so beautiful, challenging, and interesting. Looking back, I am so grateful for my experiences and what they taught me. While I still do not know what the future holds, I feel more confident about how I can make a positive difference in the world and live a meaningful life.

After I graduated from college with a degree in political science and Spanish, I had the opportunity to become an elementary special education teacher in my hometown. I got my teaching certification and a master's degree.

After a couple of years of teaching, I realized two important things. First, educators are incredible and deserve to be millionaires.  Second, classroom teaching was a lifechanging experience and I learned so much, but it was not how I wanted to spend my career.

When I made the decision to leave the classroom, I started to have those nervous feelings again about my future. Thankfully my wonderful family and friends reminded me it is okay to feel unsure, it is okay to change directions, and it is okay to do things that make us feel uncomfortable. In fact, those are the very experiences that build our character and help us grow into the fullest versions of ourselves.

I spent the next several years trying different jobs and getting deeper into the disability field. I became a job coach and job developer for people with disabilities. Helping people get jobs in the community was not only rewarding for me personally, but also very positive for the people I helped. These experiences inspired me to work on broader disability policy and service delivery issues. So I took a job as the state director of employment and day services for the Tennessee Department of Intellectual and Developmental Disabilities (DIDD). After that, I became the executive director of the Washington State Developmental Disabilities Council.

Just recently I returned to DIDD as the director of the division of program innovation. Our division creates new tools and services to support people with intellectual and developmental disabilities to create the life they envision for themselves. I have an incredible team and we are so fortunate to get to do this work every day.

If I could go back in time and talk to my childhood self, I would say it is okay to feel unsure about the future. I would also say the most important thing is to find ways to make a positive difference in other people’s lives and there are so many ways to do that.

Our life journey is about figuring about what our unique strengths and gifts are and how to share them with others. With any luck, the journey will be a long and rewarding one.

Please feel free to contact me (jeremy.norden-paul@tn.gov) if you ever want to talk about DIDD’s division of program innovation and how we are helping people become more independent at home, at work, and in their community. You can also contact me if you want to know more about my journey or swap stories about figuring out what we want to be when we “grow up”.

Top 3 Financial Aid Resources for Inclusive Higher Education

We've been hearing questions from the community about how to afford inclusive higher education. We have good news! Tennessee offers financial aid to help students with intellectual and developmental disabilities attend inclusive college programs. 

Tennessee has 6 inclusive higher education programs on college campuses, with more in the works right now. Visit TN's Inclusive Higher Education Alliance website to learn more about the programs.

So, how can families get help paying for these programs? We've collected a few great resources to help you learn about your financial aid options. 

Financial Aid Information Resources:

  1. TN Inclusive Higher Education Alliance Financial Information for Families webpage (see the PDF chart from Transition TN on this page too outlining options for families)
  2. Think College webpage on paying for college (Plus Think College is hosting a webinar on May 25 on this topic - attend and ask the nation's experts on inclusive higher education your questions!)
  3. Transition Tennessee's webcasts about postsecondary education (select "postsecondary education" check box to narrow down the results)

April 2022

View original email

From the Executive Director's Desk

Dear readers,
 
April has been a joyful month around here: we celebrated this year’s graduating class of Partners in Policymaking® scholars, who managed via Zoom to forge the same type of strong connections that make the program so special. I got to hear reflections from each scholar and was moved to tears several times. What sticks with me the most is hearing scholars reflect on the calming, safe space created by our Director of Leadership Development, Cathlyn Smith, and the renewed optimism and hope they feel because of participating in the program. That is more important than any other impact, in my view.

Internally, as staff, we are continuing to focus on team building after two years of virtual meetings plus a leadership transition. Several of us gathered at a Nashville Sounds game this week to hear Cathlyn’s daughter, who identifies as Deaf-Blind, sing the national anthem. If you haven’t heard about Tyler, you can listen to her speak for a 2020 AbleVoices "I AM DETERMINED!" virtual exhibit event or a podcast interview with her on “The Landscape”. We’re so proud to count her part of our Council family!

We still have much to look forward to, with the changing tables bill nearing the finish line and our first in-person Council meeting on Friday, 4/22. If you have never attended a Council meeting, check out our upcoming dates.

Thanks, as always, for supporting the Council and reading this newsletter. Wishing everyone a Happy Spring!

Lauren Pearcy, Executive Director

Partners in Policymaking Leadership Institute Class of 2021-22

We're so proud to welcome the following Partners graduates into our alumni network of the more than 600 graduates of TN's Partners in Policymaking program. These leaders, who are all Tennesseans with disabilities and/or family members of Tennesseans with disabilities, are a diverse group of people living across the state who will be working to improve our communities become more accessible, welcoming and inclusive to people with disabilities and families. 

Read below from just a couple of neat stories about how these graduates are already making a positive impact and supporting one another!

  • Molly Anderson
  • Allan Burtt
  • Carrie Carlson
  • Pisanach “Peach” Chinratanalab
  • Desiree Dyer
  • Rhonda Gaston
  • Michelle Gross
  • Nerressia Harris
  • Chrissy Hood
  • Teaka Jackson
  • Jacquelyne Kancir
  • Jamelle Leggs-Jemison
  • Brittney Manis
  • Teresena Medlock
  • Deborah Norman
  • Cynthia Parker
  • Dana Saywell
  • Allie Schmidt
  • Tamara Tuckson
  • Omegbhai Uriri
  • Mehret Wellelegne
  • Emily Whitson
  • Shirley Williams

Partners Graduates Advocating Together

Council staff interviewed Pisinach (Peach) Chinratanalab and McKenzie Tuckson about how they’ve worked together on advocacy for themselves and others. McKenzie responded to questions using her assistive communication device. McKenzie’s mom, Tamara Tuckson, also participated in the interview.

Peach and Tamara are brand new 2022 Partners graduates!
 
How did you meet?

McKenzie: I met Peach, my bestie, through an Employment and Community First CHOICES “Members Only” self-advocacy program. Peach said, “Take my number and I’d be more than happy to help with anything you need.” She has left no stone unturned to assist me with life after high school.

Peach: We do this quarterly [ECF CHOICES] meeting. That’s how I met McKenzie, via Zoom. And then, next thing I know, her mom is looking at the Next Steps [Vanderbilt inclusive higher education] program and talking to me about how it might benefit McKenzie. They visit me at work every Sunday at Bubble Love. Her mom and I have been in the same Partners class.
 
How are you working together to grow your self-advocacy?

McKenzie: Peach has been instrumental in my joining Best Buddies, the Arc’s People First, and Special Olympics. She was instrumental in helping me work at Bubble Love. She gave me the courage to ask if I could work there. She lets me know that if one door closes, another will open.

Peach: I get frustrated sometimes, but McKenzie’s like, “Girl, seriously. You can do anything you put your mind to. Don’t get nervous.” I spoke to Harold Love, her representative, on Disability Day on the Hill. And she’s like, “If you can speak like that, you can do anything.”
 
What are some things you’ve learned from each other?

McKenzie: I have a friend who understands me. She understands that I’m nonverbal, that I communicate with a communication device, and that it doesn’t make me any less. She accepts my mom talking for me sometimes when it’s difficult to communicate.

Tamara: Peach was instrumental in McKenzie applying to the IDEAL [inclusive higher education] program at Lipscomb. She’d call and say, “I’ve got the interview questions for McKenzie. You’ve got this. You go ahead and you try.” The day of the interview, she called as we got out of the car, saying, “You’ve got this!” She even told McKenzie, “If you don’t get in, I will try my very best to get you into the Next Steps program [at Vanderbilt], and I will be your advisor and your mentor. I’m there for you.”

Peach: Every time I get frustrated, McKenzie says, “Girl, seriously, you’ve got this. Get your life together. You know I support you.” Life can be stressful, but what I’ve learned from McKenzie is that I can do things that feel hard.
 
What advice do you have for other self-advocates?

Peach: Talk about what you’re passionate about. If you’re passionate about education, talk about that. Go to events like Disability Day on the Hill. Connect with your circle of support. Advocate, advocate, advocate. Keep up with your legislators. Help other people, support other people. Trust yourself and what you want to talk about. Practice, join a support group, and support other people.

McKenzie: My advice is to not let the title “self-advocate” make you feel like you have to do this alone. It’s okay to ask for help and to join self-advocacy groups. I’m fortunate to have Peach, my parents, and self-advocacy groups to help me in my journey. Self-advocacy can be learned at any age.

Tamara: I prayed for somebody like Peach. I asked God for a friend who could understand McKenzie and the way she communicates. Peach understands that McKenzie is aware of everything that goes on, she just has several different ways to respond.  At the end of the day, Peach has been an advocate for me, also. We needed Peach’s help. I’m a mom and have all these other responsibilities. I had just about mastered how to advocate for McKenzie in the school system, and now it’s time to transition into the adult services world, and it’s a big difference. We needed Peach’s help with ECF CHOICES [TN’s home and community-based services program for people with developmental disabilities] along with countless other resources. Peach has a wealth of knowledge, and she is eager to share it.
 
Tamara and Peach, how has Partners in Policymaking helped you grow your leadership and advocacy skills?

Tamara: I love that you have a network of people who are in class with you for several weeks and who are very open with sharing their stories. You also have educated and passionate people coming in to present and educate you about the resources that are out there. It taught me that there are so many people that are passionate about helping people with exceptional needs, and if they are unable to help, they will find someone who can.

Also, we participated in Disability Day on the Hill as part of Partners. McKenzie and Peach met with Representative Harold Love as part of McKenzie’s general education social studies class at Whites Creek High school. Her classmates got to see the friendship between McKenzie and Peach, but also see how McKenzie didn’t let anything stop her from advocating using her device. The teachers, Mr. Tidwell and Mr. Fox, were able to meet Rep. Love and make a lesson plan about the bills McKenzie and Peach supported.

Peach: I set up the meeting and arranged for it. Now I know McKenzie’s teacher! Partners in Policymaking taught me about Disability Day on the Hill. I wanted to play my part in the changing tables bill being successful.
Tamara: We were at Outback Steakhouse for my parents’ anniversary. I took a picture of the infant changing table. I took that photo so Representative Harold Love and McKenzie’s social studies classroom could see the issue first-hand: this is what advocacy looks like. I’ve also learned more about how ECF CHOICES works through Partners. It’s been great getting to know everybody in the class.
 
What’s next for your disability advocacy goals?

Peach: The main thing is keeping up with legislation. I have a new podcast, “Not So Speachless,” with support from my friend, Elijah, who is a special ed teacher. I’ve had McKenzie on. I’d like to have her on for a second episode.

McKenzie: I will continue to advocate for other individuals with exceptional needs and apply for colleges if I’m not accepted into the IDEAL program. I plan to increase my hours at work at my own pace. I am also in the process of writing two books about my experiences: “Why McKenzie Can’t Talk” and “How Is She Going to Cheer?”

Partners Graduates, Families "Out and About": Augmentative and Alternative Communication (AAC) Social Group

Tennessee Out & About is a community group for Augmentative and Alternative Communication (AAC) users and their families, friends, teachers, therapists, and mentors. They welcome people who use AAC of all ages, using any communication device or language system. It's run by a collective group of parents, mentors, and speech-language pathologists whose mission is to engage AAC users in various community activities. Tennessee's Out & About group is modeled after similar groups located across the U.S. (read more about the history of the group here).

Along with 2 speech language pathologists (Brandi Wentland and Kaleena Smith), Tennessee's Out and About group is now led by 3 Partners in Policymaking alumni who plan and participate in virtual and in-person events:

  • Chrissy Hood (2022 Partners graduate; Council on Developmental Disabilities member; parent of a young adult AAC user)
  • Omegbhai Uriri (2022 Partners graduate; Autism TN staff; parent of a young adult AAC user); and
  • Courtney Johnson (2021 Partners graduate; peer mentor and AAC user)

Chrissy Hood reflected on the value of Out and About: "During our Partners in Policymaking Class, we learned about serving on boards and being involved in the community. Being involved in "Tennessee: Out & About: A Group for AAC Users" is one way I am taking the principles learned during Partners and putting it into action. 

I love the group because my daughter Alaina has the opportunity to not only socialize while needing to stay at home for her safety, but we are also building on her communication skills and use of her AAC device, as well as seeing an AAC user, Courtney, in a leadership position - giving value to Alaina's voice/device. We all desperately want socialization during these times, and Alaina needs to practice her communication skills.

This month, we had a virtual meeting about gardening. The participants talked about what they like about spring, painted flower pots, discussed what they would plant in their flower pots, made dirt cups, discussed if they liked dirt cups, read a story, and took a family photo. We are planning an in-person event in June."

Courtney Johnson shared about the group: “I decided to get involved with Out and About for many reasons, including being able to socialize with other AAC users and to become more proficient with my device. However, I think the part that gives me the most joy is interacting with younger participants and being an AAC mentor.

I love to see their faces light up with excitement when they see a facilitator exclusively using AAC. Watching them build both confidence and friendships is absolutely wonderful!”

Get to Know a Leader: Kevin Wright, Assistant Commissioner, TN Department of Human Services Division of Rehabilitation Services

“And what do you do?” is often the first question that is asked when you meet someone for the first time, right after “What is your name?” As I prepared to graduate from high school, I didn’t know how I’d answer that question. What I did know was that because of my disability, I’d likely need a college education to do it. I knew that the Vocational Rehabilitation program (VR) could help me find my way and fund part of the journey. I also knew that I wanted to help people find their way, too.

Once graduating from college with VR’s assistance, I set out for the next part of my journey to answer that question and landed the first full-time job that paved the way for over two decades in public service.

Former Council Executive Director, Wanda Willis, saw my potential and passion for helping people help themselves. As the first-ever director of the Council’s Partners in Policymaking Leadership Institute, I could confidently answer the question, “And what do you do?” I also had the privilege of helping others help themselves by developing lifelong advocacy skills. In my 5 years at the Council, I witnessed the inspiring growth of people from all walks of life as they developed their skills to navigate complicated systems and then helped those who came after them.

I was humbled to be a part of many life journeys that took paths influenced by the Council’s work, and, in small part, mine.

After over 25 years in public service, my journey of helping people help themselves isn’t over. Recently, I had the honor of being entrusted with leading a fabulous team of dedicated folks who share my passion of supporting the journey of others with my appointment as Assistant Commissioner of the Division of Rehabilitation Services.

Our purposeful focus on person-centered, strength-focused, community-based services through a transformation in all of our programs, but specifically the VR program, over the last couple of years has been moving toward improving the customer’s experience.

While we have done a lot of work with a focus on customer success, we still have some work to do. I hope that you continue to allow us to be part of your journey as together we all help each other help ourselves.

Get to Know a Leader: James Dunn, Executive Director, TN Commission on Aging and Disability

I recently returned from a conference in Washington, D.C. focused on home- and community-based services. What I brought away from this conference is that Tennessee is not alone in experiencing a surge in our numbers of older adults and people with disabilities.
 
As a nation and as a state, we are no longer preparing for a historic demographic shift—we are in it. We are deeply immersed in the opportunities, challenges, realities, and necessities of a society with a rapidly growing number of older and disabled adults.
 
For those of you that have not met me, I was appointed last year by Governor Bill Lee to lead the Tennessee Commission on Aging and Disability (TCAD).

Since starting my tenure, through conversations with stakeholders, it is apparent to me that we can be doing more for the populations we serve. In light of this, it is great to have Council Executive Director, Lauren Pearcy, serve as a member on our Commission. Her insight and point of view from the disability space is an integral voice as we look at priorities for our agency.
 
Over 20 years ago, the State created the OPTIONS for Community Living Program to serve older Tennesseans and adults with disabilities that do not qualify for Medicaid long-term care services.
 
Today, the program serves thousands of people across the state and helps Tennesseans remain in their homes around their family, friends, and community they know and love.
 
TCAD administers the OPTIONS program through our nine Area Agencies on Aging and Disability (AAAD) that are spread out across the state. AAADs are the single point of entry for all our programs and can provide information and assistance on a case-by-case basis.
 
In his Fiscal Year 2023 proposed budget, Governor Lee put forward an additional $11.6 million for the OPTIONS program. This additional funding will double the current size of the program, giving TCAD the ability to serve more Tennesseans and ensure we have a competitive work force to care for those who need our services.
 
Ensuring the independence of our aging and disabled populations is one of our top priorities at TCAD and it’s an honor to be an integral part in serving these communities.

If you or someone you know needs assistance through OPTIONS, contact your local AAAD for enrollment, or use the Statewide Toll-Free Line: 1-866-836-6678.

I am encouraged by the progress we are making in expanding programs and developing new systems in our space, and I hope you will join me in looking ahead to the future as our populations continue to grow.

March 2022

View original email here

From the Executive Director's Desk

Dear readers,
 
One of the highlights of my career has been learning about and working on the issue of adult-size changing tables. This is an issue I knew absolutely nothing about just a few years ago. The day member Chrissy Hood was appointed to the Council is the day everything changed. As soon as she told her story about the need for adult-size changing tables in public places, the Council’s staff, members, and community partners got to work. This month, we've seen several years of that work start coming together. The bill expanding access to adult-size tables is moving through key committees in the Tennessee legislature. We also celebrated the Adventure Science Center’s new table with a ribbon cutting on Tuesday. Changing systems and policies is often slow and painstaking, so witnessing this kind of momentum feels extraordinary.

The reason I call this one of the highlights of my career (which I do not say lightly) is because of the way real citizens are leading it, with Tennesseans from all different backgrounds coming together. Legislators, state agencies, private businesses, and hundreds of citizens have stepped up to be part of addressing this issue. We all talk about teamwork, but I’ve never experienced anything quite like this.

No matter what happens this legislative session with the bill, Tennessee will never be the same. Adult-size changing tables are something we think about now. As the bill’s sponsor, Clay Doggett (R-Pulaski), said last week, “I check for a table every place I go now.” He went on to share that Pulaski installed a table in the town rec center. This is how our communities change. It’s a thrill to be part of it.

Join us by reading more about the Council here and reaching out.

Lauren Pearcy, Executive Director

Grow your leadership skills! Apply for Partners in Policymaking before March 31

  • Are you a person with a developmental disability?
  • Are you a parent/guardian/family member of someone with a developmental disability or other combined disabilities?
  • Would you like to work for real change for people with disabilities in your community and the state?

Then our Partners in Policymaking® program may be what you need!  Partners in Policymaking® is the Council’s free leadership and advocacy training program for adults with disabilities and family members of people with disabilities.  We’ve provided this 7-month series since 1993. Hundreds of graduates have gone on to do big things all across Tennessee.
You’ll learn from state and national experts on topics like:

  • Disability services and how to access them
  • New and innovative programs and ideas
  • Disability polices and practices and how they affect our lives 
  • Storytelling and media skills

The next class will run from September 2022 – April 2023.  Most classes will be virtual, with the possibility of opening and closing the class in person. 
We especially want to reach:

  • people with intellectual and developmental disabilities
  • people of color
  • dads/brothers/grandfathers
  • folks outside of Middle TN

For more information and to apply, visit our website.

Subscribe to the Council's free magazine, Breaking Ground

We're finalizing our annual arts issue of Breaking Ground, the Council's quarterly print magazine. We can't wait for you to see the beautiful works we'll be featuring from Tennessee artists with disabilities and their family members! It's one of our favorite ways to celebrate our disability community every year.

Not subscribed to Breaking Ground? There is still time for you to sign up here! You can get print copies of Breaking Ground mailed to you (including multiple copies, if you would like to have extras to share), edit your email subscription to get the magazine by email, or receive a Braille copy by mail.

Free Virtual Sibling Workshops hosted by the Council and Vanderbilt Kennedy Center

TN Adult Brothers and Sisters (TABS) is a statewide information and support network for siblings of people with disabilities. TABS is led by the Tennessee Council on Developmental Disabilities and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

The group meets monthly virtually to connect and learn from one another, and meetings often include guest speakers. TABS chats are free, informal, and confidential spaces to discuss issues that siblings of people with disabilities are experiencing. Siblings outside TN are welcome, too. Visit the Vanderbilt Kennedy Center events calendar to see and register for upcoming meetings.

Be in the Know: Newsletters We're Reading

If you have a developmental disability or love someone who does, you know: there's always more to learn. How do you track it all and stay up-to-date on issues and programs that matter?

In celebration of Developmental Disabilities Awareness Month, we're offering our pro list of the best newsletters to follow. (We admit we're biased: Each of these agencies is a member of our Council!) These are newsletters we read religiously to stay up-to-date on current news and information for people with developmental disabilities in Tennessee.

If this list feels overwhelming, don't worry: You don't have to read them all! Pick the issues or services that matter most to you. This Developmental Disabilities Awareness Month and always, we're firm believers that there is nothing more powerful than well-informed self-advocates and families to create lasting change. 

Follow the links below to subscribe:

February 2022

Original link to email

From the Executive Director's Desk

Dear readers,
 
I am excited to share a few highlights about our work this month:
 
On Monday, February 14, we presented our budget to the House Finance, Ways and Means Committee. You can watch on this link; we begin at the 1 hour 6 minute timestamp. You can download a copy of the materials we shared (PDF). (Click here to download a text-only version).

To read more about the Council’s core work, see:

  1. Tennessee Disability Pathfinder’s new website, now integrated into the state’s official app, MyTN.gov
  2. 5 year state plan
  3. Annual Report 2022

Tomorrow, February 18, we are officially welcoming three new Council members who were appointed by Governor Lee at the end of last year with “new member orientation.” These new members are:

  1. Kezia Cox, East Tennessee Development District
  2. Will Edwards, East Tennessee Development District
  3. Diamond Grigsby, Member At-Large

All of our members will come together at our next meeting, scheduled for February 25. All of our meetings are public. You can find information about our meetings on the Council’s website. We hope to see you there!

Lauren Pearcy, Executive Director

New Council Members Appointed by Governor Bill Lee: Kezia Cox, Will Edwards and Diamond Grigsby

Keiza Cox lives in Knoxville, TN and has been appointed to our Council by Gov. Lee to represent the East Tennessee Development District. Kezia works at the University of Tennessee Medical Center as an Environmental Services Assistant. She graduated from the Project SEARCH internship program hosted at the hospital. (Read more about that program below!) She is also involved with the statewide self-advocacy organization People First of Tennessee, coordinated by The Arc Tennessee. Kezia feels passionate about disability advocacy, enjoys public speaking, and loves giving back to her community.

Will Edwards lives in Knoxville, TN and has been appointed to our Council by Gov. Lee to represent the East Tennessee Development District. Will and his wife Becca have two children, Brayden and Benton. Benton is autistic. Will is an attorney at Long, Ragsdale and Waters. He also serves as a governor-appointed member of the Tennessee Council on Autism Spectrum Disorder, President of Ronald McDonald Charities of Knoxville, and Director of Project Gabriel. He’s invested in improving education and employment for Tennesseans with disabilities.

Diamond Grigsby lives in Murfreesboro, TN and has been appointed to our Council by Gov. Lee as a member-at-large. Diamond is a 2018 graduate of the Next Steps at Vanderbilt University inclusive higher education program. She is a 2021 graduate of the Council’s Partners in Policymaking ® Leadership Institute. Diamond works at Ashley HomeStore as a retail support specialist on their guest response team. She is a co-owner of Plant for A Change, a native plant business, where she is also Chief Sales Manager. Diamond became involved in disability advocacy through the statewide self-advocacy organization People First of Tennessee, coordinated by The Arc Tennessee. She enjoys legislative advocacy and speaking up about issues that she cares about, like affordable housing, healthcare, and entrepreneurship for people with disabilities.

Council Member Brigham Scallion Helps Launch TN's First Inclusive Community College Program

You might have seen the news that the TN Dept. of Intellectual and Developmental Disabilities is giving money to 4 colleges to increase access to inclusive higher education. The name of this grant program is Tennessee Believes.

Dyersburg State Community College is one of the 4 schools getting a TN Believes grant. Brigham Scallion, our Council member from Bells, TN, is a professor of biology there. He has a teenage daughter, Alayna, who has Down syndrome. Brigham was key to getting an inclusive higher education program started on his campus.

We asked him some questions about why he was passionate about helping Dyersburg State get involved in the inclusive higher education movement.

Council: You’ve been a professor at Dyersburg State Community College for some time. When did you first start thinking about the need for your school to offer an inclusive program for students with intellectual disabilities? Why is this important to you?

Brigham: I started to think about this about a few years before I joined the Council.  My oldest child attends a university that has an inclusive program. She mentioned on several occasions the opportunity our Alayna would have to attend college. I remember having the thought, “That’s cool. Why don’t we have one of these at Dyersburg State?” 

When I joined the Council, I was introduced to others involved in inclusive higher education programs. With their encouragement, I moved forward to begin the discussion with Dyersburg State Community College. This is important to me as a parent of child with Down Syndrome.

In addition, there are people in our community that need this opportunity.  There are currently no inclusive programs at community colleges in Tennessee.  It is important to me because I have taught and been a part of students’ educational lives for years now, some of whom meet the definition for "intellectual or developmental disabilities."  This new program will bring together resources for this specific group, which will allow us to serve them better.  This program will also allow us to serve students we have not been equipped to serve in the past.

How did you take the first steps to advocating for an inclusive higher education program?

Honestly, being in the right place at the right time.  Anyone that works at a community college in the state of Tennessee is in the right place today. Within months of joining the Council, I was introduced to Elise McMillan (Vanderbilt Kennedy Center) and Tammy Day (Next Steps at Vanderbilt), and this is where the conversation began.  I had no idea how to approach a project like this.  They introduced me to others, gave me contacts, and invited me to meet with other inclusive program directors. 

How has the Council supported you in that process?  

This wouldn’t have progressed without the Council.  It has been contacts through the Council which allowed me to meet with leaders of inclusive programs. Attending meetings and getting involved with the Council led me to folks who helped get this started.

In short, this would not be taking place if it were not for the Council.

What has surprised you during your involvement with developing the Eagle Access Program?

I have been surprised at the overwhelming response I received from the Dyersburg State Community College administration, faculty, and staff.  It has been reassuring to have conversations with so many that are employed at Dyersburg State who are touched by disability in all forms.

What have you learned?

This should have been done sooner; however, it takes work and friends that have advocacy experience.  This would not have happened without connections made through the Council. I have also learned community colleges have served students that fall into this category in the past and currently.  An official program and specialty disability staff/educators will allow us to serve these students better. We need these at more community colleges across our state.

Tell us more about Eagle Access. Who is eligible, and how can students and families find more information?

The program will serve students between the ages of 18 and 29.  We will work with TN Department of Human Services' Division of Vocational Rehabilitation Services to determine eligibility. Dyersburg State is forming an advisory board for the program that will serve as point of contact and help with community outreach. Students or families who are interested can contact me or the Vice President of the college for info.

What advice do you have for someone who might want to advocate for a similar program at their local college or university? 

Begin by contacting the Council and sharing your ideas. Ask for help. With this project, I have yet to find a need that someone in the state doesn’t want to help with. That help, in my experience, came from contacts I made through the Council. Contact programs like the one you want to start. Some of the most inspiring conversations I have had were with other program directors who have a passion for this field.  Talking to people who started a program or run a program will save you time and wasted effort.

Learn about all of TN's inclusive higher education programs.

New Video: Bryshawn's Story (Getting Help through the Employment and Community First CHOICES Program for Tennesseans with Disabilities)

Most mornings, you’ll find Bryshawn Jemison working out at Planet Fitness before work. In the evenings, you might find him making noodles and chicken and cleaning his apartment, with help from his assistant and friend, Tim.

Bryshawn gets support for a very full life through Employment and Community First CHOICES – Tennessee’s program for home and community based services.

“All these services help me live on my own and have the life I want.”

We’ll be sharing more information in the next few weeks about Employment and Community First CHOICES. Follow along to learn more – including details about new openings in the program. These services help people with I/DD grow their independence and work toward their goals. The services can take a lot of weight off the shoulders of family members who are supporting a loved one with I/DD.

Want to apply for services? Click here to fill out the online application.

Project SEARCH at VUMC Celebrates 100 Hires

Project SEARCH at Vanderbilt University Medical Center just hit a huge milestone!  A young lady participating in this year's cohort was just offered employment. That makes her the 100th hire from the program.

Since 2005, 117 people have graduated from the program, and 100 of these individuals have achieved employment, resulting in an 85% success rate for the program. However, since 2016, 97% of graduates have achieved successful employment (as identified by Project SEARCH). That means all jobs have been:

  • In an integrated setting
  • Making a prevailing wage
  • Non-seasonal employment
  • Working 16 hrs/week or more

To learn more about this international job placement program for people with intellectual and developmental disabilities, visit the Project SEARCH website. 

Read our 2019 article about the Council's role in bringing Project SEARCH to TN, and how we have helped expand Project SEARCH to more than 17 sites.

If you know of a business in your community that would like to explore hosting Project SEARCH interns, contact Vocational Rehabilitation Transition Director Blake Shearer with the TN Dept. of Human Services at: Blake.A.Shearer@tn.gov.

We asked Brandon Pflug, Project SEARCH instructor at VUMC, to share more info with us about this exciting milestone.

Council: You mentioned that these outcomes make Project SEARCH at VUMC one of the most successful Project SEARCH sites in the nation (and world!). What do you think are the keys to VUMC’s success (even beyond the Project SEARCH model itself)?  

Brandon Pflug, VUMC Project SEARCH Instructor: The reason that Project SEARCH at VUMC is so successful is because of the support and buy-in from Vanderbilt University Medical Center.  The medical center partners with us to provide all internships and is a champion for the program and our individuals.

We are also very fortunate to have access to 40+ departments/clinics to provide this training. It is clear that VUMC makes diversity and inclusion intentional. We are so fortunate to have the opportunity to train within their facilities!

What would you like to see happen for Project SEARCH at VUMC in the next few years? What does it look like to build on this success?

We would like to see Project SEARCH at VUMC continue to grow in the next few years.  At this time, we partner with the Vanderbilt Children's Hospital, The Vanderbilt Clinic, Vanderbilt University Hospital, Vanderbilt Health One Hundred Oaks, Vanderbilt Wilson County Hospital, and Vanderbilt University to provide internships and facilitate employment.

We are hoping to expand our base of internships and would like to be able to offer training in additional departments and facilities in the future. 

Council: What advice do you have for other employers about participation with Project SEARCH?​

Brandon: Hiring an Intern/Project SEARCH Graduate is a sound business investment!  On average, the length of service for graduates from Project SEARCH at VUMC is 7+ years!

I would encourage any manager or business to consider hiring a Project SEARCH graduate. You will gain a dedicated employee who will bring so much to the business/department for years to come. I would also encourage anyone who is having difficulty filling or retaining positions within their company/department to contact the program. Our individuals already have the services in place to come into your business, learn a job, receive coaching and training from our staff to increase efficiency, and access supports to navigate the new-hire process.

To contact the VUMC program, email me at Brandon Pflug at brandon.pflug@vumc.org. You can also post in our Facebook group, Project SEARCH at Vanderbilt University Medical Center.

In Their Own Words: Project SEARCH Graduates

 Tell us about your experience with Project SEARCH

  • “I loved being in Project SEARCH.” - Rinetta Taylor, hired 05/2008
  • “It’s been a long time since I was there, but I liked it. It helped me get this job. I love my job.  I can and will help out in any way in can. I love my coworkers, staff, and management.” - Morgan Smith, hired 10/2009

What does having a real job with real wages mean to you?

  • "I really like getting paid." - Jennifer Kovach, hired 05/2018
  • “I feel that getting paid is a reward for my contributing to the community and to have my efforts acknowledged.” - Shane Smith, hired 11/2021

January 2022

Original link to email

From the Executive Director's Desk

Hi everyone,
 
I am so proud to be writing this community as Executive Director of the Council on Developmental Disabilities. About 10 days in, my biggest takeaway is the strength of the team here at the Council. Did you know that many of our team members have been with us for more than 15 years? I’m equally as proud that several of us have joined the Council in the past 5 years, giving our team a mix of strong institutional knowledge and fresh eyes with new ideas. This is the context in which we developed our new 5 Year State Plan. You can expect our work to stay consistent with that plan. We’ll be building on what you have seen from us in the past. Behind the curtain, our team will continue to grow a strong team culture in a virtual environment. If any of our readers have tips for virtual team building, we welcome your advice!
 
My hope for this year is that we will see major progress on adult-size changing tables, which is our top legislative priority, led by citizen Council members. I would also have you look for the first public report on the TN Center for Decision-Making Support, which was launched last year with the Council’s funding and leadership. The impact that Center has made in less than a year is incredible. That includes the state’s first reversal of an unneeded conservatorship, with supported decision-making put in place instead. (Read more in Jen Cook's own words below!) Finally, I would direct everyone to check out the new TN Disability Pathfinder website. Pathfinder’s website was upgraded last year, with support from us and 5 other state agencies. This kind of partnership is unprecedented. And our investment is just getting started! We are on a path to significantly upgrade how Tennesseans find disability resources and services.

I hope reading about those highlights makes you as excited as they make me. We would not be working on any of these areas without your stories, insights, and support. Keep them coming – our power comes from your engagement with us.
 
Onward!
Lauren Pearcy, Executive Director

Council Member Spotlight: Sharing Stories of Need for Adult-Size Changing Tables

Our Council members are educating their state legislators and the public on the need for adult-size changing tables in public spaces. A Universal Changing Tables bill is right now before the TN legislature to consider this session.

This is the Council's top policy priority because member Chrissy Hood first brought it to our attention shortly after she was appointed to the Council.

Since then, Chrissy has shared her story many times with state legislators and others all across the state. Other members of our Council have joined her efforts, advocating at the state and local levels.

Here are a few highlights of the impact our members are having on this issue:

If this issue is important to you, contact your Tennessee representatives to share your story! Visit our changing tables web page for more information. 

Access 2030: Improving Accessibility in Our State Parks

Tennessee State Parks are beautiful places where nature remains unspoiled, historic sites are preserved, and the scenery is often breathtaking. 30 million people go to a Tennessee State Park every year to enjoy these magnificent places. Unfortunately, not everyone can easily enjoy our parks. Unintentional, yet real, barriers prevent people from experiencing what these special places have to offer.  
 
If Tennessee State Parks are to serve all Tennesseans, it must identify barriers and remove them. 
 
Access 2030 is a new Tennessee State Parks’ program seeking to do just that. The program is led by a Steering Committee representing agencies across state government: TN Dept. of Environment and Conservation, The Department of General Services, Health, Intellectual and Developmental Disabilities, and the Council on Developmental Disabilities. These members serve as coaches, consultants, and advocates for the Access 2030 vision: “To have the most accessible state park system in the nation by 2030.”
 
Access 2030 includes 7 projects to identify and remove barriers. Here is a quick list of those projects:

  • Park Accessibility addresses physical barriers. This project sets ADA compliance as a starting point and builds on it. The goal is to make all Tennessee State Parks more accessible to people with physical disabilities.
  • Model Park seeks to make Henry Horton State Park a model accessible park. That park will be a place where people from around the state can stay and play. The park may also serve as a place to try out new accessibility ideas. 
  • Telling Full Stories is an effort to break down the barrier of exclusivity. Sometimes stories, particularly at historic sites, are told from a single perspective. This project will seek to make sure all perspectives represented by the history are told in park stories.
  • Bureau Diversity is included in Access 2030 because diversity brings new perspectives and belonging for our staff. To attract more diverse park visitors, we need more diverse park staff.
  • Seasonal Interpretative Ranger (SIR) Diversity is a special project to create more diversity in the parks’ SIR program. SIRs are young people working in parks during the summer. They often choose a park career when they finish school. As a “feeder” program, a more diverse SIR program will lead to more diverse park staff.
  • Programming seeks to partner with schools to get students into the parks and natural areas. This program eliminates barriers such as limited curriculum and lack of transportation. This allows students who may have never been to a park to have an experience with nature.
  • WOW Moments will use technology to give more people the opportunity to experience some remarkable moments in our parks. Virtual reality and augmented reality will transport people to places and times they could not otherwise go. 

The next great opportunity for our parks is to make them accessible to more of our citizens. With the help of our many committee members, such as the TN Council on Developmental Disabilities, we are surely on our way. Let’s get this done!

- Jim Bryson, Deputy Commissioner, Bureau of Parks and Conservation, TN Department of Environment and Conservation

"The openness and excitement of the TN Parks staff surrounding accessibility for people with disabilities and their families was refreshing and encouraging. The Parks staff asked great questions, listened intently to our responses, and then navigated the park with us to actually see what we experience. We learned a lot from each other and look forward to the chance to spend more time in the parks across the state as they become more accessible over the next few years!! So thankful!" -- Council Member Alison Bynum, who joined a meeting with the TN State Parks team at Radnor Lake State Park, along with daughter Charlotte

 

Ending my Conservatorship

by Jennifer R. Cook with help from Elisa Hertzan, Esq.

My name is Jennifer Ruth Cook and I’m a thirty-seven-year old Tennessean with a mild intellectual disability. As a Britney Spears fan, I followed the #FreeBritney case and discovered that Britney and I had a lot in common. We’re both December babies, we love music, and we both had conservators. A conservator is someone appointed by a judge to make decisions on behalf of someone who is found to be disabled by the court. Conservators make decisions about where the disabled person lives, works, and even how they spend their free time and money. 

I receive services through the Tennessee Department of Intellectual and Developmental Disabilities. Ever since I can remember, I have had a conservator. Despite the conservatorship, I’ve always led a busy life.  I work as a cleaner at UT Hospital in Knoxville. I love going with friends to the movies, to Lady Vols games, and eating at Austin’s Pizza. With support from D&S staff (my service provider), I’ve learned to advocate for myself. I recently asked for more unsupervised time in the community and got it! I’m also learning how to take the bus to work. 

Cindy Gardner, Esq., my conservator, has watched my progress. Together we agreed that it was time to end my conservatorship. Elisa Hertzan, a lawyer at Disability Rights Tennessee, agreed to represent me.

The hearing was conducted by Chancellor Fleenor, a judge at the Hamilton County Probate Court. Cindy told the judge about the progress I had made. D&S staff told the judge that I was great at advocating for myself and that with help, I could make my own decisions. My lawyer gave the Court a medical report from the doctor saying that despite my disability, I could make my own decisions.  

I testified, too. I was nervous about talking to the Chancellor, but she was warm and friendly. The Chancellor asked me why I wanted to end the conservatorship. I told her that I was ready to make my own decisions with help from my D&S support team.

I got the Christmas present I wanted. On December 22, 2021, the court entered an order ending my conservatorship! I knew just how great Britney Spears must have felt when she won her case! My next big decision is planning and budgeting for a beach vacation in Myrtle Beach, South Carolina.

I hope my experience provides hope to all Tennesseans who want to end their conservatorships. Believe in yourself and advocate for your right to make your own decisions. Help is available. I encourage you and your support team to contact Disability Rights Tennessee at (615) 298-1080 and the Tennessee Center for Decision-Making Support at (615) 248-5878 ext. 322, ds@thearctn.org. They can help you with supported decision-making tools and advice on ending your conservatorship. 

New Video: Lydia's Story: Person-centered support in action

Featuring Interviews from TN's Vocational Rehabilitation and Next Steps at Vanderbilt programs

Lydia Young dreams of working in the fashion industry. She is taking real steps toward that dream, with support from Vocational Rehabilitation and Next Steps at Vanderbilt. Julie Johnson, Vocational Rehabilitation Director, knows that teamwork is key: "We want the person to be at the center...of everything we do. We're all working together to serve that purpose." Our Council funded person-centered training for all Vocational Rehabilitation staff to make sure every person with a disability can get the support they need to pursue their own career dreams.

From the Council's Chief Public Information Officer

Dear readers,

My note will be short this month, because we have NEW MEMBERS for you to meet! If you follow us on Facebook or LinkedIn, you may have seen some local press about these new Governor appointments. This is a great group of folks, and we can’t wait for you to learn a bit more about them.

Our citizen members are the foundation of our work. They help us know where the gaps and barriers are, so we can work on real solutions for our state’s system of services. In our newest video, which you can watch at this link or embedded below, former member Roddey Coe and current member Martez Williams share their stories of real-world change through their roles on our Council.