Guardianship for Autistic Adults

Some people with autism make their own health care and medical decisions. Others cannot or prefer to have someone help them with these decisions. When health care matters are complex or overwhelming it might be necessary to appoint a guardian. A health care guardian has the legal right to make health care decisions for another person, with full permission to access records and communicate with providers. A health care guardian may also be called a medical guardian.

Who should consider a health care guardian?

Caregivers for people with autism who interact with their clinicians are often required to become guardians so that they can do things like make appointments, access medical records and make important decisions in an emergency. A family with an autistic person should consider guardianship if there’s difficulty with at least one area of life:

• Health care: The person cannot understand, communicate and decide about their own health care.

• Food and shelter: The person cannot manage money, provide their own food or place to live.

• Potential for exploitation, serious injury or illness: The person cannot consistently make decisions that help them stay safe.

Whenever possible, guardians are obligated to give their autistic family member a chance to understand and weigh in on all decisions.

Lisa Nowinsky, PhD, title, discusses guardianship and medical decision making for autistic adults:

Health care guardians and other options for autistic adults

There are several options to consider when it comes to seeking guidance for medical decision-making. They may:

• Request permission for someone to see their medical information and help with decisions.

Patients must give written permission for a family member to see their health information or help with decisions. Doctors have medical release forms in their offices or on their patient portals.

• Use a tool called Supported Decision Making.

  Supported Decision Making is a way of seeking help with complex medical decisions. The final decision lies with the patient, but they can bring other people (family, friends, support professionals, or other clinicians on their care team) into the conversation so that they make an informed choice.

Self-advocates who do not need a guardian can learn more about the kinds of support they can get from the American Civil Liberties Union’s FAQs on Supported Decision-Making.

• Full guardianship.

  Guardianship is a legal process that often requires a lawyer, and each state has its own rules and may even have different types of guardians – it’s important to review the criteria for the state in which the autistic person lives. Legal forms are available at state government websites.

An attorney at Autism Spectrum News provides more details: Legal Guardianship: The Pros and Cons for Your Adult Disabled Child

Once guardianship is established, there are requirements for keeping it in place, usually an annual report filed in probate court (no lawyer required for that). Guardians should have proof of guardianship with them at all medical appointments and anywhere medical decisions are made. It's a good idea to keep a copy of proof of guardianship (usually the court document awarding guardianship) in the car, backpack or purse.

Up for discussion

Guardianship decisions and the rules governing them are under review in many states as autistic self-advocates raise concerns about their right to make their own decisions. The National Council on Disability’s report Turning Rights into Reality: How Guardianship and Alternatives Impact the Autonomy of People with Intellectual and Developmental Disabilities provides useful information about the changing attitudes and legislative initiatives affecting guardianship.