Disability Law Blog Essay

Supported Decision-Making for Persons with Intellectual and Developmental Disabilities

Authors’ Note: This is the easy read* version of another Blog post.

  • There are over 1 billion people in the world who have a disability. During their lives, most people in the world will either have a disability or know someone who does.

  • The Americans with Disabilities Act (ADA) is an important law that says people with all disabilities should have the same chances to do things as anyone else. But in the real world, it is hard to make other people follow the law.

Image of the United States Capitol Building | Photo by Matt H. Wade via Wikimedia Commons, CC BY-SA
Image of the United States Capitol Building.

  • When the ADA became a law in 1990, many people believed that people with intellectual or developmental disabilities (IDD) needed guardians to make decisions for them. The ADA did not specifically talk about this issue.

  • Many guardians help people with disabilities avoid making big mistakes. But some guardians can get in the way of people making their own decisions. This can deny them opportunities to grow.

  • One of the authors once had a conservator (another word for guardian). The author is glad not to have a conservator now because the author no longer gets along with the former conservator. The author prefers to make financial decisions without having to speak to the former conservator and is quite capable of doing so.

  • One of the authors has a cousin who has a guardian. That cousin wanted to vote. The cousin’s immediate family believed she could not vote because she had a guardian. The author told the family that was incorrect, but the family members did not change their minds, so the author’s cousin did not have the chance to vote.

Image of a sticker with the words "I Voted" printed on it.
Image of a sticker with the words “I Voted” printed on it.

  • One of the authors knows a man who has two family members as guardians. He wants to change where he lives and move out of the city. He has done a lot of work to prepare for his move. But when he shared his plans with his guardians, they told him they disagreed with his decision. So, if he wants to move, he is faced with having to go to court.

  • One of the authors has volunteered with an organization where people with disabilities help make important decisions. Their practical know-how and compassion has helped the organization make good decisions and taught the author lessons in thoughtful decision-making.

  • One of the authors wanted to hike a mountain trail but many people said she could not do it. The author believed it was possible and got a group of supporters together to help. The author hiked a mountain trail with help from others. This is an example of how supported decision-making can help people do what they want.

Image of a mountain.
Image of a mountain.

  • It is important that all people with disabilities have chances to dream big, just like anyone else. We all make mistakes sometimes and it is important to learn from them. There is a saying that if something does not work the first time, one should try again. Individuals with disabilities are no different. They should have the confidence to dream big and try new things.

Image of members of Massachusetts Advocates Standing Strong.
Image of members of Massachusetts Advocates Standing Strong.
  • We hope that this group’s work can help to close the gap in the ADA that lets guardians make decisions for people with IDD. We hope that more people with IDD have chances to make their own decisions.

* What is easy read?

“Easy read” texts present information in an accessible, easy-to-understand format. Easy read texts generally have larger font sizes, use images to complement text, and break down ideas into short sentences. They are often useful for people with intellectual and developmental disabilities and are likely beneficial for many other people, too. A good example of an easy read text is the easy read version of General Comment No. 7 produced by the United Nations Committee on the Rights of Persons with Disabilities. Another good example is the easy read submission by a Hungarian self-advocacy group as part of the same Committee’s periodic reporting process. A third example is the easy read summary included by the Mexican Supreme Court at the beginning of its 2013 decision involving a man with intellectual and/or developmental disabilities who challenged his guardianship. Increasingly, international organizations, governmental bodies, and civil society groups are working to provide information in formats that are accessible to people with various disabilities, and such as easy read texts and embedded alternative text on images for people with print disabilities.