Highlights: Supported Decision-Making in Medical Scenarios

Shannon Rosa

Thu, May 18 2017 18:39:11

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. arclogo-3635233



    Wed, May 17 2017 22:09:14

  2. [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.

  3. thinkingautism


    Now: Attending webinar on
    Supported Decision-Making: Planning for Medical Decision-Making, with @Samanticka & @TheArcUS.

    Wed, May 17 2017 18:02:10

  4. thinkingautism


    We have to get past the assumption that an adult with a #disability is a perpetual child. People with ID can make supported decisions.

    Wed, May 17 2017 18:04:49

  5. thinkingautism


    Kripke: Everyone uses experts like lawyers to help them make complicated decisions. Supported decision making for ppl w/ID is no different.

    Wed, May 17 2017 18:06:50

  6. thinkingautism


    Supported decision making is a game changer. It needs to also be a legally supported right. #disability

    Wed, May 17 2017 18:08:26

  7. thinkingautism


    Israel: supported decision making is a system that allows the person with #disability to have the final say in their lives.

    Wed, May 17 2017 18:09:51

  8. thinkingautism


    Supported decision making means the person with a #disability has a team of trusted advisers with different kinds of expertise.

    Wed, May 17 2017 18:10:50

  9. thinkingautism


    Supported decision making gets complicated with health care: needing to make calls, manage meds etc. Why support is needed, but with agency.

    Wed, May 17 2017 18:12:20

  10. thinkingautism


    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.

    Wed, May 17 2017 18:13:25

  11. thinkingautism


    Young people may need a transition program and/or training to learn how to participate in supported decision making. #disability

    Wed, May 17 2017 18:14:20

  12. thinkingautism


    Supports to help people with developmental disabilities make decisions & sign forms include easy read documents and extra processing times.

    Wed, May 17 2017 18:16:11

  13. thinkingautism


    Under the ADA & ACA, ppl with disabilities have the right to fully informed consent, that includes having someone help you understand forms.

    Wed, May 17 2017 18:17:52

  14. thinkingautism


    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.

    Wed, May 17 2017 18:19:05

  15. thinkingautism


    Informal supported decision making arrangements work. Title II & III of the ADA prohibits medical discrimination against ppl w/disabilities.

    Wed, May 17 2017 18:21:23

  16. thinkingautism


    PWD don’t have to sign HIPAA forms to have a supporter at medical appointments. HIPAA is only for disclosing medical forms. #disability

    Wed, May 17 2017 18:22:43

  17. thinkingautism


    HIPAA = only for the decision maker’s suporter to review medical records, or have conversation with supported person’s doctor. #disability

    Wed, May 17 2017 18:26:43

  18. thinkingautism


    The ADA requires federally funded medical care providers to provide ppl with #disability with appropriate communication supports.

    Wed, May 17 2017 18:24:17

  19. thinkingautism


    Durable medical power of attorney allows you to assign person to make medical decisions for you in communication/other crises. #disability

    Wed, May 17 2017 18:29:09

  20. thinkingautism


    Durable medical power of atty or health care proxy are legally binding but easily legally revoked/changed, unlike guardianship. #disability

    Wed, May 17 2017 18:30:00

  21. thinkingautism


    @autselfadvocacy has health care toolkit on setting up supported decision making:  http://autisticadvocacy.org/policy/toolkits/healthtransition/  #disability

    Wed, May 17 2017 18:35:08

  22. Note: Thinking Person’s Guide to Autism interviewed Dr. Kripke recently about Why Supported Decision Making Is a Better Choice Than Conservatorship.

  23. thinkingautism


    Kripke: supported decision making understands that capacity of decision makers with DD can fluctuate depending on environment.

    Wed, May 17 2017 18:36:35

  24. thinkingautism


    Kripke: supported decision making is not coercion. SDM means person is included, coercion means they’re begin forced or bullied.

    Wed, May 17 2017 18:37:57

  25. thinkingautism


    Supported decision making is for everyone, even people who have never been given the opportunity to make a decision in their entire life

    Wed, May 17 2017 18:38:36

  26. thinkingautism


    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.

    Wed, May 17 2017 18:39:44

  27. thinkingautism


    Kripke: We need to remember that people don’t learn to make decisions or communicate in one interaction. It can take time to learn.

    Wed, May 17 2017 18:40:43

  28. thinkingautism


    **everyone can participate in supported decision making***

    Wed, May 17 2017 18:42:22

  29. thinkingautism


    Presuming competence doesn’t deny ID/DD. It means that everyone has the potential to learn, & direct own life w/ right supports. #disability

    Wed, May 17 2017 18:43:25

  30. thinkingautism


    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.

    Wed, May 17 2017 18:45:04

  31. thinkingautism


    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 

    Wed, May 17 2017 18:46:06

  32. thinkingautism


    Supporters have to understand : Making decisions involves taking risks. We also need to reside ppl’s boundaries, take their “no” seriously.

    Wed, May 17 2017 18:48:16

  33. thinkingautism


    Supporters need to attend all their client’s meetings, include client in the meetings, not talk over/ignore their clients. #disability

    Wed, May 17 2017 18:49:15

  34. thinkingautism


    It’s also important to prepare clients with full info before supported decision making meetings. #disability

    Wed, May 17 2017 18:50:09

  35. sparklijelibean


    And advance questions that may be asked #preparation #system  https://twitter.com/thinkingautism/status/864915960645402624 


    Wed, May 17 2017 19:01:41

  36. thinkingautism


    Non-cooperation or refusal to participate doesn’t necessarily mean “no”; can mean confusion, fear, involuntary movements.

    Wed, May 17 2017 18:51:32

  37. thinkingautism


    Also: Supported decision maker may change their minds over time. Understanding this is also part of presuming competence.

    Wed, May 17 2017 18:53:25

  38. thinkingautism


    PWD have a right to maximize their potential, and so do family members/supporters. All must clarify when supports/compromise needed.

    Wed, May 17 2017 18:57:09

  39. thinkingautism


    Note: PWD who have had a lot of compliance training may need extra supports to feel comfortable making decisions with agency.

    Wed, May 17 2017 18:58:31

  40. thinkingautism


    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.

    Wed, May 17 2017 19:01:47

  41. thinkingautism


    Coercion is a real issue with PWD & end of life issues, and people/med professionals making negative assumptions re: PWD’s quality of life.

    Wed, May 17 2017 19:04:24