Is a Health Care Proxy Right for Your Child with Disabilities?

If your child has a disability and is about to turn 18, you should know about options such as a Health Care Proxy and the more involved legal guardianship, both of which allow you to stay involved in your child's medical care once he reaches adulthood.

When your child turns 18, he'll legally have the right to make decisions for himself, including those related to his health care and treatment. As an adult, he'll be required to see the doctor alone, have sole control over his medical records, and make the call when it comes to treatment options from medication to surgery.

"This is one of those things that sneaks up on parents," says Bernard Krooks, J.D. "Before they know it their kid is 18, and under the law…an 18-year-old is presumed to have capacity to make medical and financial decisions for themselves unless proven otherwise."

If your child cannot make these decisions because of a developmental disability, there are two options that can either take away or limit her rights to decision-making and assign that responsibility to you or another qualified individual.

Proxy vs. Guardianship

A Health Care Proxy, sometimes referred to as a "health guardianship," is best for high-functioning individuals, Krooks says. A Proxy allows the individual to maintain authority over health care decisions but allows the parent or designated agent to participate in treatment choices or take over the responsibility completely if the individual loses their ability to make decisions. The individual can control how much authority to give to the agent, allowing him or her to make all health care decisions or only certain ones. The agent is allowed into the exam room and may have access to the individual's medical records.

Legal guardianship should be pursued by parents of a lower-functioning individual who is unable to make decisions for herself. If a legal guardian is appointed, law dictates that the individual is not able to make decisions for herself and the guardian has complete control over all medical decisions.

What is the process like?

Those in New York State can download the Health Care Proxy form from the New York State Department of Health's website: health.ny.gov/forms/doh-1430.pdf. Those in Connecticut can download that state's form at ct.gov.

To pursue legal guardianship, the parent must collect paperwork from the appropriate doctors and health care professionals and file with the Surrogate's Court in their county, then attend a hearing. If the child has assets, Krooks says, it’s best to hire a lawyer to help you through the process.