Breaking Ground 112 - New Tool for Behavioral Health: Behavior Support Checklist

Introducing A New Tool for Behavioral Health

The checklist that follows has been reviewed by many professionals, self-advocates, and family members. But the first draft was banged out one morning after an experience with my daughter. 

Those of us who support someone with a disability know that sometimes, the person we love doesn’t have the language to tell us how they’re feeling or what they need. For both of my children with disabilities, that sometimes looks like behavior that says all is not well. But WHAT is not well? As a parent, answering that question often involves a lot of detective work. 

This checklist poured out of me a few months ago. My daughter is in 4th grade and has Down syndrome. I’d been emailing with her team about a new issue she was having at school. My husband suddenly had a lightbulb realization: we’d gotten behind on scheduling follow-up appointments with a specialist. That meant a medication dose might be out of date. I was kicking myself: How did I let this slip? 

The answer, of course, is that every parent of a child with a disability is juggling dozens of pieces of the support puzzle. It’s nearly impossible to track it all.

That’s where this checklist comes in. Here at the Council, we want to make it just a little easier for people with disabilities to have their needs met. We want to make the detective work a little easier for supporters. 

But here’s the thing: This checklist is about universal human needs. While it’s written for supporters of people with disabilities, it applies for all of us. It’s easy for parents and supporters to forget to do this detective work for ourselves. When I am worn down or struggling with anxiety or stress, I am less able to stay calm and present for my kids (or spouse or anyone else in my orbit!). Taking time regularly to think about what I need to stay healthy is part of how I care for my loved ones. 

The Council will be sharing this checklist across systems that provide support to people with disabilities. But we felt it was appropriate to share it first with you, our readers. 

• Maybe you’re a person with a disability who can use this list to help you think about your own needs. Maybe you want to share it with your parents or supporters. 
• Maybe you’re a parent of a child with a disability and you can use this list to help you understand your child’s behavior. 
• Maybe you’re a teacher who can use this list to better understand a student’s behavior support needs. 
• Maybe you’re a therapist or medical provider, and you can use this list to better serve clients or patients with disabilities.
• Maybe you work in a program that provides direct support to adults with disabilities and you can use this list to help you support the people you work with. 

Whatever your role, we hope this list will make your life just a little bit easier. Most of all, we hope this list will help people with disabilities get the support they need to live healthy, happy lives. 

Behavior Support Checklist

Supporting Well-being for People with Disabilities

Behavior is communication. It can be hard for people with disabilities to say when their needs aren’t being met. Sometimes, unmet needs show up through behavior. Sometimes, behavior is a symptom of a medical problem (like a seizure or a urinary tract infection). Supporting well-being for a person with a disability means working to understand what the person’s actions and non-verbal cues are telling us they need. 

A Checklist to Help

Key for all people:

• Independence/autonomy
  • Does the person have as much say as possible over their own life? Are they given meaningful choice whenever possible? Are they getting support to understand and make decisions?
    • Are supporters and caregivers speaking directly TO the person? Are they paying attention to the person’s responses (verbal or non-verbal) and wishes?
    • Does the person have space to take reasonable risks and make mistakes?
    • Does the person have time to be alone/do their own thing without direct supervision (as developmentally appropriate)?
    • Need help in this area? Visit the TN Center for Decision-Making Support for information and tools.

Medical Needs

• Mental health
  • Does the person have professional support for mental health? Do other family members/supporters?
  • Are there mindfulness or other mental wellness tools that could be helpful?
  • Are there signs that a more complete mental health evaluation is needed?
• Physical health
  • Is it possible the person is not feeling well?
  • Are they experiencing pain they can’t explain (for example, a urinary tract infection or dental pain)?
  • Are they getting recommended preventive, medical, and dental care?
• Medication
  • Is medication being taken as prescribed?
  • Have medication dosages been checked recently?
  • Has a doctor checked for possible interactions between different medications the person is taking?
  • Do any of the person’s medications have possible negative side effects? Are there other alternatives to try?

General needs:

• Food/water
  • Is the person hungry/dehydrated? Do they have access to good nutrition?
• Rest
  • Does the person need a physical or mental break? Is there a sensory-friendly space for a break?
  • Are they sleeping well? Do they go to bed on time and seem rested in the mornings? Could they have a medical issue affecting sleep?
• Sensory input
  • Is the person sensitive to noise, bright or flickering lights, textures, smells?
  • Is the person seeking greater sensory input (pressure, repetitive motion, etc.)?
  • How can the environment be made more comfortable for the person?
• Communication
  • Does the person have support to communicate their thoughts, feelings and desires? What tools could make this easier (for example, an assistive communication device)?
  • Is information presented to the person in accessible ways – with familiar terms, and with plenty of time to process and respond?
    
  • Are supporters trained in the person’s preferred communication methods?
  • Is the person getting help to grow their communication skills, (for example, speech therapy)?
• Physical activity/outdoor time
  • Does the person get regular physical activity that is accessible and enjoyable for them?
  • Do they have regular access to fresh air, sunshine, and the outdoors?
• Routine/structure/predictability
  • Does the person have an easy way to see plans for the moment/day/week?
  • Are the person’s preferences for routine honored as much as possible?
  • Are changes to the schedule/routine discussed in advance with the person?
  • Does the person have access to concrete information about what to expect for new/out of the routine experiences (e.g. visiting or looking at photos of a new place ahead of time, talking through what will happen at an event, etc.)?
  • What other tools might help the person’s schedule and routines feel predictable?
• Stress management
  • Is there a particular place or time behavior is happening?
  • Have there been any significant changes in the person’s life (for example, changes to aids/support staff, home environment, or schedule/routine)?
  • Have there been any losses the person might be grieving?
  • Are there stressors in the person’s family or close social circles (e.g. tense/turbulent relationships, divorce, arguments, job loss, financial strain)?
  • Is the person being included in discussions about family events or potentially stressful situations? Are changes being explained in accessible ways?
• Recreation/social engagement/connection
  • Is the person participating in a range of activities they enjoy?
  • Do they choose how they spend their free time?
  • Do they have opportunities to learn new hobbies/skills? Do they have a regular creative outlet?
  • Do they have regular, meaningful social opportunities? Do they have support to develop healthy relationships? (If local opportunities are limited, have they explored virtual groups or activities?)
  • Does the person have a friend or peer group with whom they can share their thoughts and feelings?
• Purpose
  • Is the person getting support for meaningful education or employment?
  • Does the person have opportunities to volunteer/contribute to causes that are meaningful to them (church, nonprofit organizations, etc.)?
  • Does the person have daily responsibilities to the full extent of their ability in the family or home?
• Safety
  • Have there been any sudden changes in behavior or physical markers that could be signs of abuse? (Please seek immediate professional advice if you have any concerns on this point.)
  • Are the person’s boundaries about their own body or physical space being respected? Are they being taught how to respect others’ boundaries?
  • Are there technologies or other tools to help the person stay safe while maximizing independence?