What happens when young people with disabilities become legal adults? Who will make decisions about their finances, housing, health, and safety? What will happen if their parents or caregivers are no longer able to care for them?
Although these may seem like difficult and long-term questions, it’s “better to be proactive than reactive,” Lisa, a parent of a child with disabilities from A Day in Our Shoes
wrote. “I can’t live forever,” she continues, “or at least have a guarantee that I will outlive him, if by only a day.”
Guardianship is a legal system
that makes a guardian responsible for the decisions of an individual with disabilities when he or she becomes an adult. According to a study profiled in Disability Scoop
guardianship is often recommended over other available decision-making alternatives
. “When presented with information from school officials, full guardianship was recommended in 84 percent of cases while supported decision-making was suggested just 16 percent of the time...Survey responses suggested that full guardianship was recommended no matter the person’s disability or the level of classroom inclusion they experienced in school.”
However, there are less restrictive alternatives available
including partial guardianship, living wills, and joint checking accounts. One available option that is currently receiving a lot of attention is supported decision making
. Supportive decision making is an alternative to guardianship that allows individuals with disabilities to make their own choices about their lives.
"Sorting out guardianship issues before it is too late is critical
,” writes Kyle Jensen in the South Whidbey Record
. “I feel helpless, and I’m just trying to help my sister,” Carolyn Buck, a family member says in the article. “I really hope my story shows guardians they need to work this out before it’s too late, because you never know when that’ll be.”