Curious to learn more? Check out the related webinar in the Online Learning Center!

As individuals receiving special education services approach adulthood, their parents, teachers, medical professionals, and other caring adults often have concerns about the young person’s decision-making and ability to navigate the world. All too often, the first reaction is to seek guardianship or conservatorship for the young person. While well intended, inappropriate use of guardianship can cause harm because of:

• Loss of civil rights, including the rights to vote, marry, own property, make medical decisions, decide where to live, and choose with whom to spend time.
• Negative impacts on both physical and mental health, including feelings of well-being.
• Increased passivity.
• Ongoing involvement with the court as most states require annual accounting and well-being reports.

Alternatives to Guardianship

Fortunately, there are many less restrictive alternatives for the young person and their supporters to explore. These are formal or informal options that allow a person to have their personal or financial needs met without the need for a guardian or conservator. These may be used alone or in combination, and they may involve a limited guardianship or conservatorship. These options should be based on the individual’s specific circumstances. The education, medical, public benefits, and legal systems all have different definitions of and standards for capacity. It is necessary to consider capacity in each specific area, including the capacity to make medical, educational, financial, and personal decisions. Personal decisions include relationships, living arrangements, and social activities. Capacity can be situational and can vary in degree.

Individualized Support

The specific capacity concerns should be considered in the context of the individual’s strengths and capabilities. These should drive decisions about how to help support the young person. Below are examples of ways to support a young person in specific capacity areas.

• Personal decision making: Provide supported decision-making, in which one or more individuals are designated by the young person to help them make their own decisions. In some states, there is legal recognition of supported decision-making agreements.
• Managing money, other assets, or public benefits: Establish a power of attorney, use an SSA Representative Payee, set up Achieving Better Life Experiences (ABLE) accounts, use special needs trusts, and take advantage of banking services including direct deposits, automatic payments, and money managers.
• Medical or mental health care: Provide supported decision-making, surrogate decision-making, and the use of advance directives including a medical and a mental health power of attorney.

The familiar Individualized Education Program (IEP) can help ensure that family members or other supporters stay involved in educational decisions, even after the age of 18. As capacity changes, adjustments to the supports will be needed.

There are a number of resources available, including the Finding the Right Fit course, available for free from the National Center for State Courts. Information on supported decision making can be found at the Center for Legal Representation. Other useful resources can be found at 100 Ways to Use Supported Decision Making and the South Carolina Supported Decision Making Project.

All of us need the support of people around us to navigate the many decisions we make. For many young people with disabilities, this support can be provided in ways that maintain their autonomy and rights.