Showing posts with label North Carolina Legislature. Show all posts
Showing posts with label North Carolina Legislature. Show all posts

Sunday, January 21, 2018

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

Kristine and Shawn Stead
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.   

By Taylor Knopf

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.

a woman looks at a photo album.
Kristine Stead looks through the photo album she made of her son Shawn’s time in recovery from a traumatic brain injury when he was 12 years old. Photo credit: Taylor Knopf
“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.”

an older couple sit on a sofa with a younger man who looks afectionately at the older man. they have a cat with them.
Angela-Christine, Gaven and Russell Rainear at their home in Raleigh.
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.”

Full Article & Source:
Families Offer Praise, Ideas for Reforming NC’s Guardianship Process

See Also:
Guardianship Reform on Tap in the North Carolina Legislature

Advocates Promote Guardianship Alternatives for Adults With Disabilities

Janie Desmond and Suvya Carroll
More families are skipping guardianship for their children with disabilities, even as they're exploring other legal methods to protect their loved ones.

By Taylor Knopf

Janie Desmond was nervous the first time she boarded a train in Durham headed for Greensboro. From her wheelchair, the train seemed big, loud and unfamiliar.

“I kind of wanted to convince my mom to take me to school, but I had to take the train,” Desmond said describing her freshman year UNC Greensboro. “There were a bunch of people on there that I didn’t know.”

When the train would make stops, Desmond said she was confused about what was going on.

This was one of Desmond’s first explorations away from home on her own. Over time, riding the train became no big deal. After that, she took on ordering groceries, preparing food, managing money, and other life skills.

Desmond, now 25, was diagnosed with cerebral palsy, severe visual impairment and mild intellectual disability as a child.

Many parents of North Carolinians with disabilities obtain guardianship of their children when they become adults.
Shows a young woman in a wheelchair looking at the camera. With her are two older women. They are in what appears to be a meeting room.
Janie Desmond often goes with her mother Betsey MacMiachael to presentations and advocacy events. Here they are after their presentation to the NC I/DD Joint Legislative Caucus in 2016 with Rep. Jean Farmer-Butterfield (D-Wilson). Courtesy of FIFNC Facebook page.
But not Desmond’s parents. When she turned 18, they wanted her to live as fulfilled and independent of a life as possible.

Now living in her own apartment with a roommate in downtown Durham, Desmond is proud of her accomplishments.

“Mom doesn’t have to do everything for me anymore, which I’m grateful for,” Desmond said. “Freshman year, my mom would always have to handle all of my medicine. I didn’t know how to get my prescriptions […] She use to have to do it all. Now, I’m like, ‘Mom, I’ve got this. I don’t need any more help.’”

Betsy MacMichael, Desmond’s mother, said she and her husband talked about the idea of obtaining guardianship of their daughter for about five minutes and then decided she needed to be part of the conversation.

In North Carolina, a parent seeking guardianship must file a petition with the Clerk of Superior Court, and the court must find their child to be legally “incompetent.” Guardianship removes a person’s adult rights from them.

“We wanted to give her every chance to be as competent and independent as she could be with help,” MacMichael said. “That didn’t mean we wouldn’t be there. We talked about ways we would still be in her life and supporting her no matter what. We felt like we wanted her to have the dignity of us not being her boss.”

There’s a growing movement challenging parents to consider alternatives to guardianship and think about other ways to support their children with disabilities.

A group called Rethinking Guardianship — comprised 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.

These experts say guardianship is unnecessary in many cases because young adults need to make their own decisions in order to mature into adulthood.

MacMichael is part of this movement as the executive director of First in Families of North Carolina, a statewide nonprofit that helps people with disabilities live more independently in their community.

And for seven years now, MacMichael and Desmond have worked out a system that allows Desmond to live on her own with support.

What are the alternatives?

MacMichael said that First in Families favors using alternatives to guardianship first. However, she recognizes that guardianship is necessary sometimes.

“Too often, people with disabilities are segregated into special communities, such as group homes,” MacMichael said. “First in Families wants to help them integrate and live in the regular community, if possible.

“Obtaining guardianship of someone with disabilities when they turn 18 hinders their ability to mature as an adult,” MacMichael said.

Most 18 year olds make mistakes and require advice from their elders on financial, health, housing and career decisions. A person with disabilities is no different. However, this structure of supported decision making sometimes needs to be formalized.

MacMichael recommends helping a young person establish a personal support network, people who can help in different areas of life such as finances and healthcare decisions. Many parents worry what will happen to their child once they are gone.

Creating this support network helps alleviate some of those fears. It also helps the siblings of someone with a disability not feel like the sole person responsible for their brother or sister later in life. One organization that supports siblings is called NC Sibs.

Establishing a healthcare power of attorney and power of attorney have been helpful for MacMichael and her daughter. She highly recommended both of these options.

Parents can also become the representative payee for Social Security benefits if they worry about exploitation of an adult child who cannot manage money.

MacMichael said she chose not to do this with Desmond who is slowly learning to manage her finances. Instead, they share a bank account so MacMichael can keep an eye on Desmond’s cash flow if needed.

Families should also write a letter of intent and set up a special needs trust for their child, she said.

“It’s a way for families to leave a loved one money in a trust that won’t jeopardize any government benefits that they have,” MacMichael said. “Say a grandparent leaves someone like my daughter money, she would get bumped off Social Security and she would lose her Medicaid waiver and that would be really bad.”

A special needs trust would protect from something like this.

North Carolina also passed the ABLE Act in 2015, which allows families to squirrel away some funds in a tax-exempt 529 fund, up to $100,000. The money can be used for things such as buying a new van or a major appliance.

First in Families holds workshops on will and estate planning to help demystify these things for parents of people with disabilities. MacMichael said there are ways to leave a child money in a special needs trust even if you’re not independently wealthy, such as a life insurance plan.

If a parent still feels like their loved one needs a guardian, MacMichael said she will talk to them about various degrees of guardianship, such as partial guardianship or just guardianship of the estate.

‘Love being independent’


Desmond graduated from a four-year program at UNC Greensboro called “Beyond Academics,” designed specifically for people with intellectual disabilities. She learned about budgeting, menu planning and other skills for independent living.

Then in April 2016, Desmond moved into her own accessible Durham apartment, decorated in pink, with her roommate, Suyva Carroll.

Desmond’s parents had bought a two-story house and converted it into four apartments. The bottom two are accessible for those with disabilities and the upstairs is rented out at market rate to subsidize the lower level.

The two young women said they love to sing together, go bowling, and hang out at Fullsteam Brewery. Desmond’s boyfriend Sloan often comes with them.

“I just love being independent because I can buy what I want, eat what I want, I can exercise when I want, and go out when I want to,” Desmond said.

“I love eating salads, vegetables and fruit. If I was at a group home, I wouldn’t be able to make my own decisions with food and having friends come over,” she added.

Both are looking for a paying job, but in the meantime they take advantage of volunteer opportunities, in places such as schools, the hospital and the farmers’ market.

“I’m also waiting on a paying job, but right now I’m doing a lot of volunteering because then it might turn into a paying job,” Carroll said. “Whatever God blesses you with, you got to run with it.”

Full Article & Source:
Advocates Promote Guardianship Alternatives for Adults With Disabilities

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

Guardianship Reform on Tap in the North Carolina Legislature

Thursday, December 21, 2017

Guardianship Reform on Tap in the North Carolina Legislature

Kristine and Shawn Stead
Young people with disabilities are living longer, more independent lives. Advocates for them say it's time to update guardianship laws to create more choices for them.

By Taylor Knopf

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.
a young man stands in front of a wall with a hockey stick, posters and other memorabila on shelves, his parents ahve guardianship over him
Shawn Stead standing in his room at his parents’ home. Photo credit: Taylor Knopf
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.
shows a young woman in a wheelchair standing with two older men and an older woman. The bill will make it easier for parents who have guardianship of their children to sav for their future
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.
“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, a clinical assistant professor at UNC Chapel Hill’s School of Social Work, facilitates the workgroup drafting reforms for the general statute on guardianship.
Shows a woman smiling at the camera.
Linda Kendall Fields, University of North Carolina at Chapel Hill, Jordan Institute for Families, courtesy of Facebook.
“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.

“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.
Shows a woman, sitting in the drivers seat of a car, looking at the camera and smiling. The photo looks like a selfie.
Catawba County Assistant Clerk of Court Terri Lawson, courtesy of LinkedIn.
“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.


Full Article & Source:
Guardianship Reform on Tap in the North Carolina Legislature