Surrogate Decision Making for People with Developmental Disabilities

Susie is 18 years old. She has been diagnosed with Asperger’s syndrome, which makes it difficult for her to socialize and communicate with others. She attends a school for children with special needs but is planning to attend a special course of study at a local community college after she graduates from high school. As there is a presumption that all 18 year-olds are competent adults, Susie is expected to be able to make legal, financial, and medical decisions for herself, but she plainly needs assistance in those areas. Since Susie is high-functioning, she can sign a power of attorney and a health care proxy designating her parents as agents to make legal, financial, and residential decisions for her. Susie, however, has a legal right to revoke those documents at any time.

Bill also is 18 years old. He has been diagnosed with an autism spectrum disorder. Bill also attends a school for children with special needs, but his ability to communicate is severely limited. He cannot read or write. The law presumes that Bill can manage his financial and medical affairs now that he is 18 years old, but he is unable to do so. Bill requires a guardianship so that his parents can make legal, financial, and medical decisions for him.

Guardianship is a legal proceeding whereby a court appoints someone to make decisions for a person who is cognitively impaired and cannot manage his or her affairs. Guardianship is a creature of state law, and therefore, the application process varies from state to state. In some states, the legal relationship between the person in need of guardianship services and the individual appointed to make decisions for that person is called a conservatorship.

Some individuals with developmental disabilities can make some decisions but may need assistance in other areas. In such cases, a limited guardianship, whereby the person who needs guardianship services retains the power to make some decisions, may be appropriate.

Guardianships can be temporary or permanent, depending on the needs of the incapacitated person. If the person is no longer incapacitated, the court can enter an order discharging the guardian.

The guardianship process may take several weeks or months to complete. While it is not necessary to retain an attorney to initiate a guardianship application, many parents do so to ensure that their child will be adequately protected.

While guardianships often are necessary, they should not undermine the incapacitated person’s right to self-determination. Least restrictive measures should be considered, such as the execution of powers of attorneys and health care proxies, as well as limited guardianships.

© National Academy of Elder Law Attorneys

This information is provided as a public service and is not intended as legal advice. Such advice should be obtained from a qualified Elder Law attorney. To find one in your area, visit www.NAELA.org, and click on “Find an Attorney.”