Parents of youth with developmental and other significant disabilities often find themselves considering the issue of guardianship as their son or daughter with disabilities nears the age of 18 (the age of majority in most states). The resources below can help parents explore this topic by considering the pros and cons of guardianship, legal alternatives to guardianship, and a less restrictive process known as supported decision-making.

Informed Choice: Know the Options

What if My Child is Not Capable of Representing Him or Herself? is an updated publication from PACER’s National Parent Center on Transition and Employment (NPCTE) that discusses the transfer of rights at the age of majority under the Individuals with Disabilities Education Act (IDEA), as well as guardianship and conservatorship options. Read more (pdf).

What Does Guardianship Mean to You?

In a new video from PACER’s Youth Advisory Board on Mental Health, young adults share how they see their guardians as key partners in the transition to adult health care. This video is fourth in a 4-part series, Preparing for Adulthood: Taking Charge of My Own Health Care. Watch the videos.

Supported Decision-Making,
an Alternative to Guardianship

Do individuals with complex, lifelong Intellectual and Developmental Disabilities have equal opportunities to practice self-determination and informed choice? The President’s Committee for People with Intellectual Disabilities submitted a 2016 report raising concerns that guardianship can be a barrier to self-determination for such individuals. They devote a large section of their report Strengthening Inclusive Pathways for People with Intellectual Disabilities and their Families, to exploring supported decision-making as a way to increase self-determination and improve an individual’s quality of life. Read more (pdf).

New Resources on
Supported Decision-making

• Supported Decision-Making Teams: Setting the Wheels in Motion
  This new publication from the National Resource Center for Supported Decision-Making, helps parents consider options to help children make their own decisions and direct their own lives to the maximum of their abilities. Read more.

• The Right to Make Choices: International Laws and Decision-Making by People with Disabilities – Part 2: Supported Decision-making
  The Autistic Self-Advocacy Network has published a new “easy read” toolkit to help self-advocates, policymakers, providers, and families understand how laws can make it easier or more difficult for people with disabilities to exercise the right to manage their own lives. Read more (pdf).

• Autonomy, Decision-Making Supports, and Guardianship
  This position paper adopted by Arc, Chapters of Arc and the American Association on Intellectual and Developmental Disabilities in 2016 affirms that “each individual adult or emancipated minor is presumed competent to make decisions for himself or herself, and individuals with I/DD should receive the preparation, opportunities, and supports to develop as a decision-maker over the course of his or her lifetime.” Read more.