Below are examples of tools which offer practical resources, some of which already are summarized on the AIDE Canada website1. These resources come from various organizations and teams.
Contents
- About My Health Tool
- My Health Visit Tool
- The Nuts and Bolts of Health Care for Direct Support Professionals Toolkit
- Preparing for Future Emergencies Checklist
- Pathfinders for Autism
- AASPIRE Autism Healthcare Accommodations Tool
- AASPIRE Worksheets for Autistic Individuals
- Summary
- References
1 - About My Health Tool
This Canadian resource2 aims to assist individuals with IDD in providing important health and care information to their health care providers. It was developed by the Surrey Place Developmental Disabilities Primary Care Program.
The tool captures demographic and contact details. It also identifies things that are important to the patient, including support people, medical history, and ways to make the health care visit better.
The forms can be downloaded and edited to reflect one’s own information:
2 - My Health Visit Tool
The Surrey Place Developmental Disabilities Primary Care Program also developed the My Health Visit Tool 3, which helps an individual with IDD note their reason for a medical visit, what happened during the visit, and what aftercare/follow-up may be needed. Health care providers are encouraged to assist with filling out details. The form is a fillable PDF and can be found here:
See a summary of these resources on the AIDE Canada site entitled “Improving Communication Between Persons with Intellectual and/or Developmental Disabilities and Primary Care Physicians: The My Health Visit and About My Health Tools” 1
3 - The Nuts and Bolts of Health Care for Direct Support Professionals Toolkit
This Canadian toolkit 4 offers improved individual or family access to health care support. It was developed by the Health Care Access Research and Developmental Disabilities (H-CARDD) program and Vita Community Living Services (CLS).
The toolkit can be found at: https://nutsandbolts.ddtoolkits.com. It is directed to health care professionals, but also offers practical support for navigating health care.
The toolkit focuses on various health conditions and situations. It has five sections as follows: Tools and Tips for Heath Care Visits, Enhancing Communication, Health Care Information, Monitoring Charts, and Health Care Handouts for People with IDD. This toolkit offers ways to collect health-related information and share it with health care providers.
The Nuts and Bolts of Health Care toolkit references the About My Health and My Health Visit tools that were discussed in the sections above. Sample forms and tips for filling out these tools can also be found at the Nuts and Bolts website.
4 - Preparing for Future Emergencies Checklist
This short 1-page checklist is an excerpt from the The Nuts and Bolts of Health Care for Direct Support Professionals Toolkit4. It provides important information about things you should consider and plan for in the event of a medical emergency:
Preparing-for-Future-Emergencies.pdf
5 - Pathfinders for Autism
This organization is based in the United States and has created a series of guides for parents of autistic children who are attending a health care visit. Some tips include meeting with the health care staff to see if they are a good fit for the child and parent, discussing if they offer support for, and/or are supporting, autistic patients, reviewing potential accommodations, practicing the visit with your child through social stories or roleplay, having a bag of preferred items pre-packed for the visit, and aiming to have the first appointment (less waiting) or last appointment (likely able to have more time spent with child) of the day.
More information can be found here5, along with links to their other tools:
Pathfinders for Autism also hosts visual supports for various medical visits and procedures6:
6 - AASPIRE Autism Healthcare Accommodations Tool
Based in the United States, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) conducts action research in autism and adulthood. This group has developed the Autism Healthcare Accommodations Tool (AHAT) 7.
This too was developed to help create a report for an autistic individual to provide to their health care team regarding strategies and accommodations that work best for them in a health care setting. The tool can be found here: https://autismandhealth.org
Different domains are addressed by the tool, along with suggestions for health care providers on how best to work with the autistic individual. Some examples include:
- Communication – includes information on preferred communication styles (including alternatives to speech), reading and writing skills, and ways to best communicate with the autistic person
- Recommendations to make the visit go smoothly – e.g., bring a support person, write down information, allow for breaks, etc.
- Recommendations to help with examinations (if needed) – show equipment beforehand, warn before touching, anesthesia needed for certain things, etc.
- Recommendations for shared decision making – involving a support person when possible, explaining consequences of non-compliance with service provider requests
- Recommendations to help the autistic person engage in care – involve a support person, provide detailed written instructions, show how to take medication as directed
- Information to help health care providers better understand the autistic person – may not report pain, may have difficulty with strong smells, may fidget and look around but is still listening, etc.
- Strengths, interests, triggers, how an autistic individual may display anxiety or overload, things that may help
Individuals can go through these items and select areas and items that are relevant to them. Below are two sample reports, which offer examples of what could be created to help someone consider important areas for them, and how to craft a similar document themselves:
The original research article8 about this tool is available at the link below. This includes a PDF that shows all possible responses to the previously described fields, which might help an individual to plan their own report:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5023610
7 - AASPIRE Worksheets for Autistic Individuals
AASPIRE has also created fillable PDF worksheets8,9 related to several important topic areas that are geared for assisting autistic adults. The worksheets can be found here:
Topics include:
- Making a medical appointment
- A checklist of things to bring to an appointment
- A worksheet to detail the symptoms that one is experiencing
- A worksheet of questions one can ask regarding what happens after an appointment, with space to fill in directions given by health care providers
8 - Summary
These resources offer practical resources to enhance access and navigation of health care. They are intended to support people with IDD in having their health care needs met. For more details, please see each of the websites, as indicated in this review.
9 - References
- Improving Communication Between Persons with Intellectual and/or Developmental Disabilities and Primary Care Physicians: The My Health Visit and About My Health Tools. Aide Canada. Accessed June 2024. Link
- My Health Care Visit: Understanding Today’s Visit and Follow-up. Malhas, M., Hermans, H., Orr, E., Salonia, C., Zaretsky, L., & Lunsky, Y., Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019. Link.
- My Health: Learning about the healthcare and communication needs of adults with intellectual and developmental disabilities. Melhas, M., Hermans, H., Orr, E., Salonia, C., Zaretsky, L., & Lunsky, Y. Developmental Disabilities Primary Care Program of Surrey Place, Toronto, 2019. Link.
- Perry, A., Hingsburger, D., Malhas, M., Orr, E., Zaretsky, L., Hermans, H., Salonia, C., Selick, A., Volpe, T., & Lunsky, Y. (2019). The Nuts and Bolts of Health Care for Direct Support Professionals Toolkit. Toronto, ON: Health Care Access Research and Developmental Disabilities Program. Link.
- Shelly McLaughlin. Pfa Tips: Preparing for A Visit to The Doctor’s Office. 2019, Pathfinders for Autism. Accessed June 2024. Link.
- Visual Supports for Hospital and Doctor Visits. Pathfinders for Autism. Accessed June 2024. Link.
- Autism Healthcare Accommodations Tool (AHAT). Academic Autism Spectrum Partnership in Research and Education (AASPIRE). Accessed June 2024. Link.
- Nicolaidis C, Raymaker D, McDonald K, Kapp S, Weiner M, Ashkenazy E, Gerrity M, Kripke C, Platt L, Baggs A. The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. J Gen Intern Med. 2016 Oct;31(10):1180-9. https://doi.org/10.1007%2Fs11606-016-3763-6
- The AASPIRE Healthcare Toolkit Forms & Worksheets. Academic Autism Spectrum Partnership in Research and Education (AASPIRE). Accessed June 2024. Link.
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