Help for people with disabilities to make decisions about their own health care
Persons with disabilities, especially persons with intellectual disabilities, are expanding their ability to remain independent and to make decisions for themselves. Using an approach called supported decision making, people with disabilities seek the support of a family member, friend, or other trusted persons to help make or communicate a decision. These persons, called “supporters,” can assist the person with a disability in any type of decision. Supported decision making allows a person with an intellectual, developmental, or other disability to avoid a guardianship or conservatorship by providing the assistance the person needs.
Supported decision making can be used in health care and medical treatment decisions. For example, a person with a disability can discuss with the supporter the benefits and risks of a medical procedure or taking a drug. The supporter can help the person with a disability understand complex medical language or the side-effects of a medication. If the person with a disability cannot communicate clearly to a doctor, nurse, or other medical provider, the supporter may be able to assist. Persons with disabilities can use the supporter for any other purpose that he or she deems is needed. The key is the person with a disability makes the decision about their own health care, with any requested assistance from the supporter.
The following video provides an overview on the use of Supported Decision Making in Health Care and Medical Treatment Decisions:
Supported decision making may be used under most current State laws. A number of States have gone further and passed legislation to include supported decision making in a specific statute. In some cases the use of a supporter may be contained in a written agreement. In other cases, the agreement may be more informal, but certain concerns about privacy can still be addressed.
Medical providers and other health care professionals need to be ready to treat and engage persons with disabilities who are using a supporter. Persons with disabilities and their advocates should understand how to use supported decision making when making health decisions to avoid unnecessary guardianships or conservatorships.
The following sections offers more information about support decision making for medical and health care providers; persons with disabilities; and family members, friends and advocates for people with disabilities.
For Medical and Health Care Providers
As more and more people with intellectual and developmental disabilities use supported decision making, health care providers need to be ready. Supported decision making can be an accommodation so a person with a disability is fully engaged in decisions about their health care.
- How will supported decision making impact my practice? How can I be ready when a person with a disability seeks to use a supporter? How is supported decision making different than a power of attorney for health care, or a health care proxy? For answers to these and other questions, see this Frequently Asked Questions.
For People with Disabilities, and their Family, Friends, and Advocates
Supported decision making can be key for a person with an intellectual, developmental, or other disability to retain the freedom to make decisions. Persons with disabilities can use a supporter to decide about a medical procedure, to explain medical care documents, or to better understand a discussion with a doctor.
- Plain Language Frequently Asked Questions for people with intellectual disabilities.
- How can supported decision making be used in health care? What is the role of the supporter? How is supported decision making different than a power of attorney for health care, or a health care proxy? For more detailed answers to these and other questions, see this Frequently Asked Questions.
More Supported Decision Making Resources
With the expansion in interest in supported decision making, the National Resource Center for Supported Decision-Making offers a broad range of information. This includes several resources on health care and life planning.
The University of California, Davis Health MIND Institute has comprehensive videos and resources on guardianship, conservatorship and the advantages of supported decision making.
Several States and localities have created pilot projects on supported decision making. Organizations in New York have developed Supported Decision Making New York funded by the New York State Developmental Disabilities Planning Counsel. In Massachusetts, two pilot programs have been created and information developed about supported decision making.