Resource Link

https://odpc.ucsf.edu/sites/odpc.ucsf.edu/files/pdf_docs/Training%20Materials%20for%20Professionals%20and%20Policy%20Makers.pd_.pdf

Resource Description

Introduction: This document explains Supported Health Care Decision-Making for doctors and policy makers. It comes from the Office of Developmental Primary Care at UCSF. The document shows how this approach can help people with disabilities make their own health care choices with support. It explains why this is better than other legal options that take away people's rights to make their own choices. The paper is meant to help professionals understand and use this new approach.

Resource Summary

Content Summary: Like everyone else, people with disabilities sometimes need help with health care. They might need help making doctor visits, talking with doctors, making choices about care, and following care plans. Some get help from family or friends, while others get help from paid workers. Supported Health Care Decision-Making lets people with disabilities pick one or more trusted helpers. This approach is based on the idea that people with disabilities should have the same rights as everyone else. They should be able to make choices about their own bodies and health care, and get the help they want from people they choose. A key point is that people can manage their care with the right help, even if they can't do it alone. Helpers can be family, friends, or others the person trusts. Some people should not be helpers, like the person's doctor, anyone suing them, or staff at their home. Helpers for people with disabilities work like translators do for people who speak other languages. They help the person understand and make good choices. Current options like guardianship have many problems. When doctors worry about getting proper consent from patients with disabilities, they often turn to guardians or powers of attorney. But guardianship costs a lot, is hard to undo, and takes away the person's rights. Often the person has no say in who will make their choices. Powers of attorney are easier to change but still take away the right to decide. Supporters of this new approach have created model agreements. These papers spell out how patients, helpers, and doctors can work together. They make it clear what each person's job is. The agreements are cheap to set up and easy to change as needed. These agreements help both patients and doctors. Helpers commit to helping patients understand choices in ways that work for them. They can also give other kinds of help, like going to visits or helping follow care plans. Helpers can help doctors get past communication problems, learn about health history, and make care better. But doctors should still talk mainly to patients. The person with a disability keeps the right to make final choices about their body and health. The proposed laws would recognize helpers legally. They would protect doctors who share private information with helpers or act on choices made with help. Doctors don't have to accept choices if they think the patient was forced or didn't get good information. The patient can change or end the agreement any time for any reason. More information is available in a video and on the Autistic Self Advocacy Network website.