By Taylor Knopf, N.C. Health News

GREENSBORO, NC, December 22, 2017: 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.

Kristine and Shawn Stead share a laugh at their home in Garner. Photo courtesy Taylor Knopf.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.

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 pageGuardianship 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.

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.

Gaining support

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, University of North Carolina at Chapel Hill, Jordan Institute for Families. Photo courtesy of Facebook.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.
“My job is to make sure we involve everyone,” she said. “We want to work through 2018 to have listening sessions and dialogue […] We want everyone to pick [the drafted legislation] apart and put it back together.”

Fields said there should be no surprises for anyone when a bill is introduced in 2019.

This type of stakeholder input is important for many kinds of industry-specific legislation. When legislative reforms are introduced at the statehouse, it tends to work best if the bill has been vetted by all affected stakeholders.

For instance, mental health advocates tried in vain for years to get legislation passed that would raise the age a person is considered a juvenile in the North Carolina court system to 18. But sheriffs came out against the bill every time it was introduced. So advocates worked with law enforcement officers to find compromise language they felt comfortable with. The legislation finally passed earlier this year when they gave their support.

Similarly, guardianship reform will likely need the support of the clerks of court to gain traction.

“This is intended to be a consensus effort,” Dunn said. “We want all the folks who will have to carry out the changes to be on board.”

In North Carolina, guardianship hearings happen at the county court level and, well into the computer age, they all still use paper records. That makes it difficult to know the exact number of guardianships across the state’s 100 counties.

Catawba County Assistant Clerk of Court Terri Lawson.Even though we all read the same statute and attend the same classes, each clerk is different in how they handle guardianship matters,” said Terri Lawson, Catawba County assistant clerk of court.

“I feel that if they were a part of the Rethinking Guardianship initiative, then they would view guardianship matters differently,” Lawson added. “I was not aware of a lot of things until I joined the group years ago. It really opened my eyes. I wish more clerks would look at guardianships differently.”

Rethinking Guardianship conducted a pilot project in Catawba County viewing guardianship files from the past two and a half years to better understand what guardianship looks like in North Carolina.

Fields said the data is a helpful benchmark.

‘Presumption of permanence’

The group is also working to educate everyone involved, including the school system and pediatricians who routinely send out form letters to all families with a disabled child, urging guardianship when the child is about to turn 18, no matter the level of independence.

“We want to eliminate the presumption of permanence with guardianship,” Fields said. “There should be periodic checks to see if people are treated fairly and see if their capacity has changed.”

Lawson, the assistant clerk, said she has started that review process for many of her guardianship cases in Catawba.

“I want the guardians to always be looking toward restoration,” she said. “There are some that may actually regain [their rights] and others that are certain they will always need [a guardian].”

Dunn said the goal is to give clerks of court clear factors to consider when they are deciding how frequently they should review a case.

“If someone was ruled incompetent because of an injury, say TBI, you may want to revisit that sooner rather than a dementia case,” she said.

Dunn said she would also like to see the system move away from full guardianship as a default position. There are different forms are partial guardianship and alternatives, such as creating a natural support network of trusted life advisors — a cousin they can go to with car troubles or a friend who’s a nurse and can advise on healthcare decisions.

Another way to improve the guardianship process and move toward rights restoration is more education on mental illness, developmental disabilities and injuries.

“There needs to be better training available for everyone in this system,” Dunn said.

There is little education on specific medical diagnoses for clerks of court and guardians ad litem, who are court appointed representatives for the person guardianship is being sought over.

Curbing abuse

Fields said there are unfortunate stories of people being abused by a guardian.

“Abuse often crops up in a human system when one person has the power and others are vulnerable,” she said.

Lawson said the court is not required to follow up with guardianship cases, but she thinks guardians should always be held accountable.

If someone suspects guardianship abuse, they can file a report with the county Department of Social Services. It’s the responsibility of DSS to file a motion with the clerk of court to request a hearing on the issue, Lawson said.

But if DSS is already the guardian, that can be tricky.

These are all issues the Rethinking Guardianship workgroup will explore with interested parties over the next year.

Taylor Knopf joined NC Health News in March 2017 and covers rural and mental health news. She is a 2017-18 regional fellow with the Association of Health Care Journalists.

Posted on The Carolina Peacemaker on December 22, 2017