In this year’s edition of Diplomas Count, my colleagues and I explored topics around postsecondary transition for students with disabilities. As a part of that, we covered the importance of students learning to advocate for themselves.
For example, Sarah Sparks wrote about research-based self-advocacy training; I wrote about self-advocacy in the context of gaining job experience before graduation; and Holly Yettick wrote an account of a college-bound Colorado teen who was deciding whether she would seek support for her dyslexia.
But many young adults with disabilities are losing the legal right to control their own lives, because family members are often being told that guardianship is the best, or only, option for their disabled relative, according to a survey of parents and people with disabilities. The link to the full report, which was published earlier this month in the journal Research and Practice for Persons with Severe Disabilities, will be available through July 11.
Guardianship a Common Recommendation
Guardianship, also known as conservatorship, gives a person the legal authority to make decisions for another. In partial guardianship, the guardian has limited powers, but far more often, guardians of people with disabilities are being steered to, and granted, full or “plenary” guardianship. With that type of guardianship, they can make all decisions on another’s behalf.
About 1,200 respondents completed an online survey about guardianship developed by the advocacy group TASH and by the coalition APRAIS (Alliance to Prevent Restraint, Aversive Interventions, and Seclusion), including who first told them about guardianship and whether they were informed of other options. About 37 percent of the people surveyed said they had a guardian or were guardians themselves. The disability categories mentioned by the survey respondents include autism, developmental disabilities, intellectual disabilities, and speech and language disabilities.
Survey respondents said that school personnel discussed full guardianship 84 percent of the time compared with 16 percent discussing a less-restrictive option known as supported decision-making. Adult service personnel recommended full guardianship 79 percent of the time. In some cases, guardianship is considered a default next stop for young adults leaving school. From the study:
... the practice of transferring rights seems to have become embedded in the transition process of [individualized education program] online computer support systems. In some IEP software programs used for IEPs to support millions of public school students with disabilities, information relating to guardianship is included in transition process forms (i.e., an age of majority form) and does not offer alternatives to full or partial guardianship to parents, and as previously described, the differences between full and partial guardianship for individuals with disabilities are often indistinguishable.
But the long-term implications of guardianship were rarely discussed, the researchers said. For example, guardianships are difficult to undo, and the person with a disability may outlive his or her guardian, who is often a parent. In such cases, a stranger may then step into the guardian role, which will continue even if the original guardians are dead. And the person with the disability may end up with low self-esteem and a sense of passivity about his or her own life, the researchers said.
Alternatives to Guardianship
Barb Trader, the executive director of TASH (formerly known as The Association for the Severely Handicapped) said she wasn’t surprised by the results, “but we were saddened by [them.]” Guardianship is a reflexive recommendation for many young adults, and often, the recommendation is coming from someone who doesn’t have the legal background to understand the legal ramifications of such a decision, she said.
Teachers have a huge role to play here, Trader said. “By the time a child turns 18, if a parent hasn’t been steadily encouraged to have high expectations for their child, they don’t have a lot to go on,” she said.
But there are several resources for educators and others who want to learn about options for young adults besides guardianship, Trader said. For example:
- The National Resource Center for Supported Decision-Making is a clearinghouse of information on less-restrictive options to guardianship.
- States have multiple Centers for Independent Living, which help adults with disabilities make decisions about their own lives. The website also has links to resources about youth transition.
- Many states have groups that are organized by people with disabilities; one well-known group is People First, which has chapters in several states.
- Every state has a Council on Developmental Disabilities. These federally-funded councils promote self-determination and inclusion.
- Each state and territory has at least one University Center for Excellence in Developmental Disabilities. Those 67 centers also work to promote community inclusion and independent living.
Photo: Blake Yee, center, watches his MY VOICE presentation with his father, Steven Yee, and mother, Rolyn Yee, at the Supported Training Experiences Post Secondary (STEPS) building in Naperville, Ill., along with Kate Bruno, far left, a case manager and support teacher in the program. As part of the program, youths with disabilities prepare a multimedia presentation to showcase their post-graduation plans.—Alyssa Schukar for Education Week
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A version of this news article first appeared in the On Special Education blog.