Adults with disabilities are leading longer lives thanks to advances in medicine and technology and where once people with disabilities died young, now a good number will likely outlive their parents. But many of those parents have been the guardians for their children, providing guidance, security and steering their every move.
Advocates for guardianship alternatives believe that supporting this population to live more independently would be best for everyone in the long run. In North Carolina, they’re getting ready to introduce legislation to update how guardianship is done for many.
“Demographically we know there are a lot of adults with disabilities whose elderly parents have been their primary caregivers and, in many cases, guardians,” said Corye Dunn, a Disability Rights NC lawyer.
“Our system is not prepared to have all those folks dumped into public guardianships over the next decade.”
Advocates with Rethinking Guardianship are eyeing the 2019 “long” legislative session to introduce reforms to North Carolina’s guardianship laws.
The group is already collaborating with county clerks of court — those are the people responsible for guardianship cases proceeding in North Carolina — to talk about needed changes and draft new policy.
Guardianship is a legal process where the court takes away the rights of adults found to be “incompetent.” A guardian is given the right to make that person’s decision for them; if a guardian dies, the guardianship is usually given over to the local Department of Social Services which then becomes the public guardian.
In North Carolina, different types of guardianship are obtained for a variety of reasons.
There are many senior citizens with a guardian. Maybe a widowed grandmother is getting older and someone needs to make healthcare and housing decisions for her. So her son applies for guardianship to help make those decisions.
Then there is Kristine Stead in Garner. Her son Shawn was hit by a truck when he was 11 and suffered a traumatic brain injury which impacts his decision-making abilities. When Shawn turned 18, it was clear he wouldn’t join the workforce and live independently right away.
Kristine Stead is one of many parents in North Carolina who has sought and secured a type of guardianship over her child. Many parents choose this option so they can protect their child. Stead said she wanted guardianship of Shawn mainly for any medical need that might arise.
FIFNC Executive Director Betsy MacMichael with daughter Janie Desmond, former Governor Pat McCrory and Senator Richard Burr at the 2015 signing of the ABLE Act. The law makes it easier for parents to save for their children without financial penalty. Photo courtesy of FIFNC Facebook page.
On the other hand, there’s Janie Desmond, a 25-year-old woman from Durham who was diagnosed with cerebral palsy, severe visual impairment and mild intellectual disability as a child. Instead of seeking guardianship, her parents support her in other ways so she can live independently in her own apartment and make choices through supported decision making.
The group Rethinking Guardianship — a group made up of clerks of court, civil rights lawyers, university experts, state health and human services staff, and other disability advocates — is working to improve North Carolina’s guardianship process and help people think about alternatives.
“Our guardianship laws are dated,” said Dunn, who is also a member of Rethinking Guardianship. She said that many people see it as something normal, like a legally generated service, rather than “a limit on the liberties of people with disabilities.”
There’s also a growing movement challenging parents to move away from guardianship and think about other ways to support their children with disabilities. Some advocates say that in order for an adult with disabilities to mature toward independence, they must be given the freedom to make their own decisions and mistakes, the same way young adults without disabilities learn.
The Rethinking Guardianship workgroup formed three years ago with a grant from the NC Council on Developmental Disabilities. The group is facilitated by NC Department of Aging and Adult Services in partnership with the UNC School of Social Work Jordan Institute for Families.
After years of research and discussion, the group is ready to reach out to the broader group of stakeholders.
Linda Kendall Fields, a clinical assistant professor at UNC Chapel Hill’s School of Social Work, facilitates the workgroup drafting reforms for the general statute on guardianship.