Summit for adults with intellectual and developmental disabilities held in Chapel Hill

, Summit for adults with intellectual and developmental disabilities held in Chapel Hill, The Local Reporter


By Kylie Marsh

Carol Conway’s son often can’t sleep through the night, is non-verbal, and needs 24/7 care. He is also 36 years old. He was born with Kleefstra syndrome, a rare genetic condition, and is one of the many adults in North Carolina with either a developmental or intellectual disability.

Conway is chair of Parent Advocates for Adult Children with I/DD (an intellectual or developmental disability), a grassroots group of families with adult and young children with genetic conditions like cerebral palsy, Down syndrome, and autism.

“It started as a small group of parents worried about housing for their children,” Conway said. “We’re baby boomers, and we’re the first generation that didn’t institutionalize our children.” But as these parents continue to age, they worry about the social infrastructure available to their children.
Conway’s son currently lives at an intermediate care facility (ICF), where he has access to programming, peers and direct support professionals (DSPs) who can give him the care he requires. However, this is not the norm. Conway says there is a crisis of adequate care, housing, and employment opportunities for adults with I/DD in the state of North Carolina.

Last Saturday, she and other families across the state met for a summit with state representative Zack Hawkins, The Arc of North Carolina, the North Carolina Council on Developmental Disabilities, the North Carolina Department of Health and Human Services, Hope North Carolina, and Disability Rights North Carolina to discuss the growing crisis of finding care for adults with I/DD.

Finding care professionals who can assist adults with I/DD in their homes or living facilities is challenging. In North Carolina, adults with I/DD are eligible for government-funded vouchers called Innovation Waivers that are distributed through North Carolina Medicaid. The state legislature added 350 spots for waivers in the state’s budget last year. Over 2,000 people in the state have Innovation Waivers. There are currently over 17,000 on the waiting list, which can take anywhere from 10-15 years to clear.

In addition to the worker shortage, Conway says pay for DSPs (Direct Support Professionals) is “abysmal,” leaving little to no incentive for professionals to choose it as a career path. and that no new care facility has been licensed in two decades. This year, an additional $6.50 per hour was appropriated in the budget to pay DSPs, but Conway called this a small gesture.

“There is real frustration with the state legislature,” she said. “We feel most of them don’t get it. The representatives in the State House and Senate are living in particularly rural, isolated areas with sparse populations, where they don’t really see or come in contact with people with I/DD that often.”

“Real expertise comes in understanding the individuals,” she said.

Saturday’s summit included two panels: one that assessed the situation for adults with I/DD in North Carolina today, and the second dealing with housing. Conway said she believes it was a success in the shared recognition that there is a need to organize and educate parents, not just of adults with I/DD, but young children as well. Conway’s plan moving forward is to gather adults with I/DD who can advocate for themselves and families to develop a common agenda and lobby the state legislature with regular visits.

“We have these legislative days, but they’re just one day; one shot,” she said. “We need all the organizations and families and advocates going together on the same page.”

“While this is a statewide problem, other states do not have these problems,” Conway said. The Triangle area is known as an autism research hub due to Duke and UNC.

In the long term, Conway would like to develop more Parent Advocate groups statewide in places like Wilmington, Asheville and Greensboro.

A former TLR correspondent from Durham, Kylie Marsh returns to writing for the paper, albeit from new digs in Charlotte. Her work has also appeared in QCity Metro. As a graduate of NYU, she writes about local issues of class, race and inequality. When not freelancing, Kylie is organizing for the rights of workers, women and the homeless in Charlotte. 

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2 Comments on "Summit for adults with intellectual and developmental disabilities held in Chapel Hill"

  1. Totally agree with their frustratiion, and they certainly have valid points that some patients aren’t receiving adequate healthcare. That’s a disturbing issue.

    They may want to consider working more with groups representing adults with developmental disabilities, instead of only groups for their parents. We advocate best for ourselves, and have for a long time. Often our needs and goals are in direct conflict with our parents and caregivers, with our own voices drowned out.

    It’s a bit weird to read about others advocating for us, where we are not invited as the primary participant.

    Nothing about us, without us.

  2. My friend in Chapel Hill sent me this article because of my 50 year journey with my son who has an intellectual disability and my foundation’s (Homes For Life) efforts to build 4 person neighborhood homes for others like my son.

    I also served on The President’s Committee for People with Intellectual Disabilities in DC (PCPID) from 2011-2014. I had a front row seat as I watched the “Nothing About Us, Without Us,” high functioning self-advocates question perfectly legitimate housing programs. Despite the good intentions of this group, my son, and others like him do not have the capacity to navigate the system and must rely on their parents and other family members.

    During Covid 19. I wrote my memoir, “Mom with a Megaphone”. It was written as a “primer” to educate the families about the system, especially Medicaid, and how important it is to get involved with the policies and politics.

    It is available on Amazon. I am NOT, let me repeat NOT trying to sell books. I receive $5 for every book sold which goes to our foundation. You can google it and read an excerpt.

    There are hundreds of families and many disability organizations like Together for Choice, National Council on Severe Autism (NCSA), VOR, and A-team USA advocating for a variety of choices for housing, and employment. Our voices must be heard.

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