Families Offer Praise, Ideas for Reforming NC’s Guardianship Process

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North Carolina’s program to provide guardianship for people with serious mental health or intellectual issues is in need of updating. In a multipart series, NC Health News will take a look at the issues around guardianship and what might need to change.

A week before Shawn Stead’s 12th birthday, he was riding a scooter in his Garner neighborhood when a Ford F-150 truck hit him.

He suffered a traumatic brain injury (TBI), spending the first three weeks at WakeMed hospital in Raleigh unconscious. Doctors said he would likely die or be brain dead.

Shawn’s mother, Kristine Stead, said she needed hope of a better outcome.

“He said, ma’am, I don’t think you understand the severity of your son’s injuries,’” Kristine recalled the neurologist saying.

“I don’t think you understand I’m his mother and I need a third option, please. We need something else to hold on to,” she told the doctor.

Shawn defied everyone’s expectations. After 78 days at the hospital, Shawn was discharged.

He relearned to walk and talk. He’s participated in Special Olympics. And he graduated from Garner High School.

“I was like a Pokemon, leveling up higher and higher,” said Shawn, now 22.

Though Shawn made a full-recovery physically, his brain was altered in the accident. Daily life tasks are more difficult for him. He can’t drive. And as Shawn approached 18, it was clear he wouldn’t join the workforce and live independently right away.

Shawn’s mother Kristine is one of many parents in North Carolina who have sought and secured a type of guardianship over her child.

Now, there’s a growing movement challenging parents to move away from guardianship and think about other ways to support their children with disabilities.

Some experts say it’s unnecessary to obtain guardianships in many cases because young adults needs to make their own decisions in order to mature into adulthood properly. NC Health News will examine that more fully in Part 2 of this series.

But Kristine says the process has worked for her family and Shawn.

How it works

In North Carolina, there are a few types of guardianship.

A “guardian of the estate” is an adult appointed only to manage a ward’s property, estate and business affairs, according to N.C. general statute 35A. A “guardian of the person” is an adult appointed only to manage the care, custody and control of a someone the court deems “incompetent.” And a “general guardian” is someone who controls a ward’s person and estate.

A parent seeking guardianship must file a petition with the Clerk of Superior Court and for parents seeking guardianship of their children aging into adulthood, the court must find the teenager to be an “incompetent child.”

The term is legally defined in the general statute as “a minor who is at least 17 1/2 years of age and who, other than by reason of minority, lacks sufficient capacity to make or communicate important decisions concerning the child’s person, family, or property, whether the lack of capacity is due to mental illness, mental retardation, epilepsy, cerebral palsy, autism, inebriety, disease, injury, or similar cause or condition.”

A guardian ad litem is appointed to represent the ward and make sure he or she understands what is happening. The guardian ad litem also talks to the ward about rights they may wish to keep, such as the ability to vote, choose their own religion or pick friends.

This can be helpful for some families, like the Rainears of Raleigh. Their 18-year-old son Gaven has autism and Asperger’s syndrome. While Gaven has a pretty large vocabulary, he’s soft spoken and doesn’t always tell people what he wants.

“We didn’t have any idea he would like to have the ability to pick his own religion,” his father Russell Rainear said. “I’m fine with it. You pick your religion, friends and who you vote for, absolutely. But I wouldn’t have thought of any of those things had [the guardian ad litem] not talked to him about it.”

Obtaining guardianship of an adult means taking individual rights from them. It requires the person seeking guardianship to file a lawsuit against the person they are seeking guardianship of.

Parents must inform family members via mail and give them an opportunity to object. Law enforcement officers serve papers on the wards to inform them a parent is seeking guardianship.

Kristine Stead found the process mostly pain free. After all the paperwork was filed and the guardian ad litem met with Shawn, they headed to the Wake County courthouse.

“The judge was sitting up at the bench when we walked in. He came down from the bench, grabbed a chair and sat at the table with us,” she said. “It was very informal — I think because we weren’t fighting against someone [.…] Neither parent was fighting for custody.”

Kristine didn’t hire a lawyer because no one was contesting the guardianship.

Russell Rainear hired a lawyer. He and Gaven worried some relatives might interfere. A couple clerks of court interviewed have said it is not necessary to obtain a lawyer, but sometimes people do.

“A year before we filed the paperwork, we had conversations once a month, reminding him that this was coming. This is how this will go. It’s not a bad thing,” Russell said. “The officer is going to the house in uniform and serve you papers. He’s going to tell you we are suing you for guardianship of you… It’s a very intimidating process.”

Angela-Christine Rainear, Gaven’s step-mother, said she thinks there should be a different process for uncontested guardianships of people with established disabilities.

“There should be a gentler, softer version,” she said. “Gaven didn’t contest to guardianship, but we still had to sue.”

The Rainears said they are dreading going through the guardianship process again with their youngest son, who is 17 and also has autism. Unlike Gaven, the younger boy is mostly non-verbal.

Peace of mind

Many parents of children with developmental disabilities see guardianship as a way to protect their loved one. It gives them peace of mind.

Kristine Stead said she sought guardianship of Shawn mainly for any medical need that might arise.

“If he needs to go to the doctor or has a procedure, I can go in. There is no signing anything,” she said. “I go right in. They have to answer my questions, they have to talk to me. It makes it easier.”

She added that if Shawn gets into a difficult situation, or makes a poor decision, she can override it as his legal guardian.

“Or if he makes a decision and it’s someone taking advantage of him, I can come back and say, ‘you didn’t get my permission.’” Kristine said.

Russell Rainear feels similarly about Gaven.

“The world is going to expect him to walk out of high school, across that stage and be somebody he’s not ready to be,” he said.

“Gaven is a gem. You can take him anywhere. He’s super polite and proper. He can carry himself well in general,” Russell added. “He just can’t by himself. He won’t speak up for himself. He won’t take care of himself. If left alone, he won’t make the right decisions.”

Both Kristine and Russell plan to restore their sons’ rights someday when the young men are ready.

Shawn has become more independent over time. He takes a cab when he needs to go somewhere. He likes to run errands and go to the gym with his grandfather.

He’s made small steps towards self-sufficiency, such as clipping his own nails, doing laundry, emptying the dishwasher, and taking the trash and recycling out on the right days.

When he got a job at Target recently, his mother was thrilled.

And Shawn’s fine with his mom being his guardian. It helps him out, he said.

Gaven said sees guardianship as a necessity.

“I’m incredibly less stressed now,” he said.

Gaven is excited to graduate from high school and building skills for independent living. He’s starting to figure out the bus system.

He can prepare simple meals such as rice, mac ‘n’ cheese and frozen pizza. And he does some chores, like folding clothes and emptying the cat’s litter box.

He enjoys writing science fiction short stories and looks out for his little brother. Gaven holds his brother’s hand and walks him to his special education classroom every morning.

Is guardianship always necessary?

There is a growing movement challenging parents to move away from guardianship and think about other ways to support their children with disabilities.

“In North Carolina, we overuse guardianship,” said Corye Dunn, a lawyer with Disability Rights NC.

She said there are small number of cases where guardianship is necessary. But Dunn and organizations such as Rethinking Guardianship and First in Families NC believe in helping a young adult with disabilities through supportive decision making.

“I think people really need to examine their goals in seeking guardianship,” Dunn said. “There are important developmental opportunities in those years between 18 and 25. Most young adults make mistakes and that’s developmentally appropriate. That’s how you learn to be an adult.”

Just because someone turns 18 does not mean they have all the knowledge and skills to be a successful adult. Most young people turn to trusted elders for advice, Dunn explained.

“Maybe you go to dad for financial help,” she said. “Or maybe it’s an aunt who is a nurse who you talk to about healthcare.”

For someone with a disability, the goal would be to formalize this support network for them.

“You create an agreement with the focus person and all the people in their life who they trust to be advisors,” Dunn said. “The advisors agree to be the advisors in specific areas and only those.”

Someone with a disability can give their power of attorney over if needed or ask that a parent come into a doctor’s appointment with them.

Parents often focus on good decision making and keeping their child safe, Dunn said.

“As people, we balance safety against freedom, what we enjoy, and long and short-term benefits,” she said. “If everything is about safety, we deny them the human experience.”

North Carolina Health News