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Highlights: Supported Decision-Making in Medical Scenarios
Because medical decisions often need to be made in stressful situations, involve complex information, and require weighing of significant risk, planning is important. There are many ways that people with intellectual and developmental disabilities (I/DD) can receive support to make decisions about the health care they want to receive.
- [image above: The Arc's logo: An orange/yellow paint swoosh on a white background, above black text reading, "The Arc".]
The following tweets are from a webinar hosted by The Arc National's Center for Future Planning, on supported decision making for people with intellectual and developmental disabilities, both in general, and regarding medical care. The speakers discussed how supported decision making works, why it's a less restrictive option than guardianship, and how people with ID/DD can benefit -- in ways their caregivers and loved ones can get behind. The webinar was conducted by Sam Crane and Kelly Israel from The Autistic Self-Advocacy Network, and Dr. Clarissa Kripke of the UCSF Office of Developmental Primary Care.
For more information, see The Center for Future Planning's Resource page on Supporting Daily & Major Life Decisions. - Now: Attending webinar on Supported Decision-Making: Planning for Medical Decision-Making, with @Samanticka & @TheArcUS.
- We have to get past the assumption that an adult with a #disability is a perpetual child. People with ID can make supported decisions.
- Supported decision making is a game changer. It needs to also be a legally supported right. #disability
- Israel: supported decision making is a system that allows the person with #disability to have the final say in their lives.
- Supported decision making means the person with a #disability has a team of trusted advisers with different kinds of expertise.
- Young people may need a transition program and/or training to learn how to participate in supported decision making. #disability
- PWD don’t have to sign HIPAA forms to have a supporter at medical appointments. HIPAA is only for disclosing medical forms. #disability
- HIPAA = only for the decision maker’s suporter to review medical records, or have conversation with supported person’s doctor. #disability
- The ADA requires federally funded medical care providers to provide ppl with #disability with appropriate communication supports.
- Durable medical power of attorney allows you to assign person to make medical decisions for you in communication/other crises. #disability
- Durable medical power of atty or health care proxy are legally binding but easily legally revoked/changed, unlike guardianship. #disability
- @autselfadvocacy has health care toolkit on setting up supported decision making: http://autisticadvocacy.org/policy/toolkits/healthtransition/ … #disability
- Note: Thinking Person's Guide to Autism interviewed Dr. Kripke recently about Why Supported Decision Making Is a Better Choice Than Conservatorship.
- Presuming competence doesn’t deny ID/DD. It means that everyone has the potential to learn, & direct own life w/ right supports. #disability
- Sometimes listening to people with ID/DD is complicated. @RutiRegan has advice for being a better listener: http://www.uctv.tv/shows/When-Listening-is-Complicated-Skills-for-Honoring-the-Individual-Perspectives-of-Every-Person-with-Disabilities-32191 …
- Supporters need to attend all their client’s meetings, include client in the meetings, not talk over/ignore their clients. #disability
- It’s also important to prepare clients with full info before supported decision making meetings. #disability
- And advance questions that may be asked #preparation #system https://twitter.com/thinkingautism/status/864915960645402624 …
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