Using Supported Decision Making in Health Care: Frequently Asked Questions for Persons with Disabilities, Family Members, Friends, and Supporters

Using Supported Decision Making in Health Care: Frequently Asked Questions for Persons with Disabilities, Family Members, Friends, and Supporters

A shorter plain language Frequently Asked Questions on SDM and health care for persons with disabilities is available.

What is Supported Decision Making (SDM)?

A person with a disability can use what is called supported decision making to help make or communicate a decision about any part of their life. Supported decision making is also known by the letters “SDM.” A person with a disability can use SDM so he or she can better understand, make, or communicate a decision. This includes decisions about health care. A person with a disability can use SMD to avoid a guardianship or conservatorship. Any person with a disability can use SDM. People with intellectual and other developmental disabilities have in the past been those who most often use SDM.

This guide answers questions for persons with disabilities, and their family members, friends and advocates on the use of SDM when making decisions about health and medical care. Other guides are available about using SDM for other types of decisions. These additional guides can be found through the resource page at SDMmedicalcare.org.

How does SDM work in Health Care?

A person with a disability who uses SDM picks one or more people to help them make or communicate a medical decision. The person or persons selected are called “supporters.” The person with a disability chooses what the supporter(s) will do. Here are examples of how a supporter can assist in terms of health care:

  • Go with the person with a disability to a doctor’s appointment
  • Assist the person with a disability complete paperwork at the doctor’s office
  • Explain to the person with a disability medical or health insurance terms
  • Help the person with a disability remember her or his past or current illnesses and symptoms
  • Assist the person with a disability in getting copies of his or her medical records
  • Help the person with a disability in understanding her or his medical records
  • Discuss the benefits and side effects of taking a drug with the person with a disability
  • Help the person with a disability make a decision about medical treatment
  • Assist the person with a disability communicate with a doctor or nurse if he or she needs help in saying what he or she decides

These are just examples. A supporter could do other things if the person with a disability asks for help in other areas.

Who can be a supporter?

A person with a disability can pick whom she or he trusts to be a supporter. One or more persons may be used as supporters. It is important that the person with a disability makes the choice of how many and whom will be a supporter. A supporter may be a family member, a trusted friend, and even a staff member who works with them.

Does SDM need to be formal or in writing?

SDM can be a formal or informal agreement between a person with a disability and the supporter or supporters. There may be times when a written agreement, known as an SDM agreement, may be a good idea. Some States have laws which specify what must be included in an SDM agreement.

How do will a doctor or a nurse know about SDM?

A person with a disability who has a supporter should tell the nurse, doctor or other medical staff about his or her supporter. If a person with a disability has a written SDM agreement, a copy may be given at the doctor’s office.

How does SDM work at the Doctor’s Office?

While at the doctor’s office, the supporter should be allowed in the treatment or exam room if that is the choice of the person with a disability. The person with a disability can use the supporter in several ways. The supporter can assist the person with a disability complete paper-work or help the person remember dates, prior diagnosis, current medications, or other things it may be difficult for the person with a disability to remember. The supporter can help explain what the doctor says in simpler language or in a manner the person with a disability can understand. The supporter may be able to help the person with a disability understand the benefits and risk of a treatment by asking questions the person with a disability may have.

Who makes the Health Care decisions under SDM?

The person with a disability is always the one who makes a decision under SDM. This includes medical care. Unless the person with a disability is subject to a guardian or conservator, she or he always makes the final decision.

What are the Privacy Issues that may occur?

The person with a disability can sign a release form to allow the supporter to see medical information about the person and to listen to conversations between the doctor and the person. Doctors must keep medical and personal information about a patient private under the law. Doctors can share information with the supporter if the patients agrees. By signing what is called a HIPAA form, the person with a disability can agree to allow the supporter to see or hear private medical information. HIPAA stands for the Health Insurance Portability and Accountability Act, a federal law which protects medical information.

Are other documents required to use SDM in Health Care?

In most states, a written supported decision making agreement is not required. The person with a disability should check their State’s law to determine if the SDM agreement should be in writing. In some cases, it may help the person with a disability and the supporter or supporters if the SDM arrangement is in writing, even if not required under State law.

Can the supporter make a health care decision for the person with a disability?

No, the person with a disability makes all decisions, including about health care, when using a supporter.