Thursday, May 18, 2017

Highlights: Supported Decision-Making in Medical Scenarios

Highlights: Supported Decision-Making in Medical Scenarios

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.
  1. [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.
  2. Now: Attending webinar on Supported Decision-Making: Planning for Medical Decision-Making, with @Samanticka & @TheArcUS.
  3. We have to get past the assumption that an adult with a #disability is a perpetual child. People with ID can make supported decisions.
  4. Kripke: Everyone uses experts like lawyers to help them make complicated decisions. Supported decision making for ppl w/ID is no different.
  5. Supported decision making is a game changer. It needs to also be a legally supported right. #disability
  6. Israel: supported decision making is a system that allows the person with #disability to have the final say in their lives.
  7. Supported decision making means the person with a #disability has a team of trusted advisers with different kinds of expertise.
  8. Supported decision making gets complicated with health care: needing to make calls, manage meds etc. Why support is needed, but with agency.
  9. You want to presume competence on the part of the person with DD. Otherwise team of advisors can take over or strong arm decision maker.
  10. Young people may need a transition program and/or training to learn how to participate in supported decision making. #disability
  11. Supports to help people with developmental disabilities make decisions & sign forms include easy read documents and extra processing times.
  12. Under the ADA & ACA, ppl with disabilities have the right to fully informed consent, that includes having someone help you understand forms.
  13. While most states do not have supported decision making laws, in all, all you have to do to set someone up 4 SDM is NOT enact guardianship.
  14. Informal supported decision making arrangements work. Title II & III of the ADA prohibits medical discrimination against ppl w/disabilities.
  15. PWD don’t have to sign HIPAA forms to have a supporter at medical appointments. HIPAA is only for disclosing medical forms. #disability
  16. HIPAA = only for the decision maker’s suporter to review medical records, or have conversation with supported person’s doctor. #disability
  17. The ADA requires federally funded medical care providers to provide ppl with #disability with appropriate communication supports.
  18. Durable medical power of attorney allows you to assign person to make medical decisions for you in communication/other crises. #disability
  19. Durable medical power of atty or health care proxy are legally binding but easily legally revoked/changed, unlike guardianship. #disability
  20. Note: Thinking Person's Guide to Autism interviewed Dr. Kripke recently about Why Supported Decision Making Is a Better Choice Than Conservatorship.
  21. Kripke: supported decision making understands that capacity of decision makers with DD can fluctuate depending on environment.
  22. Kripke: supported decision making is not coercion. SDM means person is included, coercion means they’re begin forced or bullied.
  23. Supported decision making is for everyone, even people who have never been given the opportunity to make a decision in their entire life
  24. Even if someone has never made a decision before, supporters need to keep trying to support them to be able to engage in decision making.
  25. Kripke: We need to remember that people don’t learn to make decisions or communicate in one interaction. It can take time to learn.
  26. **everyone can participate in supported decision making***
  27. Presuming competence doesn’t deny ID/DD. It means that everyone has the potential to learn, & direct own life w/ right supports. #disability
  28. We need to be patient & give ppls with disabilities the time to respond, and process. Can’t put ppl on the spot for complicated decisions.
  29. Supporters have to understand : Making decisions involves taking risks. We also need to reside ppl’s boundaries, take their “no” seriously.
  30. Supporters need to attend all their client’s meetings, include client in the meetings, not talk over/ignore their clients. #disability
  31. It’s also important to prepare clients with full info before supported decision making meetings. #disability
  32. Non-cooperation or refusal to participate doesn’t necessarily mean “no”; can mean confusion, fear, involuntary movements.
  33. Also: Supported decision maker may change their minds over time. Understanding this is also part of presuming competence.
  34. PWD have a right to maximize their potential, and so do family members/supporters. All must clarify when supports/compromise needed.
  35. Note: PWD who have had a lot of compliance training may need extra supports to feel comfortable making decisions with agency.
  36. A DNR for a PWD can be complicated; doctors and hospitals may not believe a DNR is the PWD’s own wishes. Need legal documentation.
  37. Coercion is a real issue with PWD & end of life issues, and people/med professionals making negative assumptions re: PWD’s quality of life.