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.
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.
N.C. Department of Health and Human Services guardianship guide
N.C. General Statute on guardianship and incompetency
N.C. Court System’s guardianship guide video
Rethinking Guardianship
First in Families of North Carolina
Disability Rights NC
“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.
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.”
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Beautiful job with the story Taylor. Thanks so much for covering this! Betsy
There are a few issues that are different for people living with psychiatric disabilities, who may have intermittent periods of losing decisional capacity– and at other times be quite capable of handling their own affairs. Psychiatric advance directives are a legal tools that can allow a person to state preferences and consent for treatment in advance. They’ve been found to have the potential to reduce involuntary commitments. And the ABLE Act is great — but it excludes most people with psychiatric disabilities because the disability must arise before age 26. A serious mental illness may emerge before age 26, but it’s not uncommon for the person to not be disabled — the disability may come at a later age.
True. I agree there are important differences in how alternatives to guardianship are relevant for people with mental health vs developmental disabilities, in some cases. Also, the Able Act in my view is just a financial tool (not an alternative to guardianship), and one that only makes sense if the person has a good paying job— granted a goal, though elusive, for many.
Excellent educational article. Most families have no idea what they are getting their families into with a guardianship. Once a person is ruled incompetent-which is necessary to get guardianship- their freedom is gone and the loved one they are trying to protect is now open to anybody- relatives or not -coming in, taking or challenging the guardianship. You’re at the mercy of the court and they will rule which ever way they want. A durable power of attorney covers a person even if they become incompetent after giving POA and it doesn’t require an attorney or court to draw up. It keeps the court system and corruption out of your life. Glad to hear more families are educating themselves and making a smart move away from guardianships.