When the Sidewalk Ends
Part II of "What Are You Trying to Tell Me?" Neurodevelopmental Disorder Care Across North Carolina
There are limited opportunities for developmentally disabled individuals past high school. The North Carolina Medicaid Innovations Waiver allows these individuals to lead independent lives while offering assistance where necessary. The demand for waiver slots, however, overwhelmingly exceeds its supply.
“Life changes in the ordinary instant,” Joan Didion believes and reminds us throughout her year of magical thinking. If our lives change in the ordinary instant, I believe that change only multiplies over the course of 13 years. A baby who needs constant caring and attention blossoms into a pubescent teenager. Spending weekends at little league or riding bikes around the neighborhood shift to those spent with friends and significant others. Baby teeth have fallen out and adult teeth have come in – albeit crooked and probably braced.
The changes we fare on the outside start with developmental leaps found within. When mom leaves the room, we no longer squirm at the thought she’s gone forever; she’s still there we tell ourselves, just no longer in plain sight. When someone cries, we understand an unsettling mental image or social interaction has brought them to tears; we see emotions that were once beyond visibility and they marinate on a deeper cognitive level.
A 32-year-old resident of Chapel Hill, N.C., Kenneth Kelty, has intellectual developmental disability (IDD). Over the course of thirteen years, he experienced the same ebbs and flows of aging I’ve described but with the added challenge of living in a post-educational world not designed for the disabled. After high school, he and his family faced the question of what comes next? An answer he and the rest of America aren’t able to answer with confidence.
There is a solution, we’re told. And that solution is the NC Innovations Waiver, a Medicaid Home and Community-Based Service Waiver (HCBS) that allows individuals like Kelty to live independently and self-sufficiently as they grow. The waiver provides services like in-home care so that intellectually disabled individuals are able to live independently. The alternative? An institution.
Merely needing the waiver is not enough to access its services. Staffing issues, a limited number of waiver slots and restricted government funding keep its promise at bay from those who need it most. Kelty would know … he waited 13 years for its promise to be granted.
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Kenneth grew up in West Palm Beach, F.L. with one of his three sisters, Caroline. Their single mother raised the pair while working various administrative jobs to support the family. Kenneth attended public school and was a part of the state’s Exceptional Student Education program, designed for students with special needs – the equivalent to North Carolina’s Exceptional Children division. Once Kenneth got to high school, however, his post-graduate options were slim. Rather than earning a traditional high school diploma, he’d instead earn a certificate of completion, which didn’t sit right with Kenneth’s mother.
The family relocated to North Carolina when Kenneth was 16. While he could attain a traditional high school diploma, the state posed a new challenge: a decades-long waitlist for the NC Innovations Waiver. The waiver allows for disabled adults to live independently through governmental support, providing professionals to assist in at-home care when and where necessary.
Following high school graduation, Kenneth first turned to Wake Tech Community College’s Compensatory Education Program. The program, now known as the Pathfinder Career Exploration program, is “designed for adults with disabilities and those who struggle academically who want to further their education and prepare for the workplace,” according to the program’s site. Similar to Florida’s “certificate of completion,” a program that was the shell of a college wasn’t quite what Kenneth envisioned for himself.
“It didn’t really work out for me,” said Kelty. “It was very segregated and congregated even though it was part of Wake Tech. It wasn’t really on the campus and more hidden near like grocery stores where it was more restricted.”
A surgery to correct his knock knees – as Kenneth also has cerebral palsy – put his education at Tech on hold. A long recovery allowed him to rethink what came next. He wound up enrolling in Western Carolina University’s University Participant (UP) Program, “an inclusive, two-year, on-campus living and learning experience for college-aged persons with intellectual disability,” according to the program’s site. He graduated with a certificate of accomplishment. It was at Western where he became interested in advocacy work. For the past eight years he’s worked for Triangle Disability and Autism Services, formerly known as The Arc of The Triangle.
While Kenneth sought out educational opportunities were there were few, pragmatic elements of everyday life could not be fixed through a college certificate. How could he get to the grocery store to stock up on ingredients for the week if he can’t drive? Who do individuals like Kenneth turn to as they age and their caretakers, like his mom, age as well? Without a sufficient support network, individuals with developmental disabilities can “fall off the cliff,” as Kenneth explained. Furthermore, the support network around them wanes as individuals grow out of the education system.
“When you’re in the K through 12 section, you can get all these services that are based in schools when you have an IEP,” said Kenneth. An IEP is an Individualized Education Plan, allowing parents and teachers to create a curriculum that caters to a student’s needs. “Once you’re legally out of the school system, you may unfortunately be stuck at home, becoming very isolated or withdrawn.”
The waiver, once more, challenges this narrative by providing Direct Support Professionals (DSPs) to help individuals run errands and do basic tasks around the house. According to the U.S. Department of Labor, DSPs provide “necessary supports and services to people with disabilities of all ages, including supports related to employment.” Now that Kenneth benefits from the waiver, he has a DSP visit his apartment in Orange County twice a week. The pair will take his dog, Archie – “like the royal baby,” Kenneth said of his name – on walks through his neighborhood or to Harris Teeter to buy groceries for the week. The waiver’s services offer invaluable independence for disabled individuals, allowing them to live at home and receive services typically found in institutionalized settings.
“It can give families like mine assurance that when they’re gone, that they can have supports to make sure they don’t fall off the cliff.” Falling off the cliff, however, is the product of a waitlist leaving many individuals unattended to.
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“I might have a better chance of winning the lottery,” said Doug Brown when I asked if there’s any expectation of when his son, Micah, will get off the waitlist.
The waitlist for Innovations Waiver slots is a multi-faceted issue. Individuals are asked to wait so long for accommodations for reasons plaguing the healthcare industry as a whole, not just those with developmental disabilities.
Kenneth tackles these issues on his podcast, “The Waiting Room,” where he discusses the waitlist with experts at-length. In two of his episodes, he dives into the role of DSPs with guest experts. Being a DSP is an emotionally-taxing job that comes with little financial reward and minimal room for growth. As a result, the North Carolina Department of Health and Human Services has a difficult time finding workers to fill the role.
“They can make more plucking chickens at the Purdue Chicken Factory than they could doing direct care work,” said Janet Price-Ferrell, Executive Director of FIRSTWNC in Asheville, N.C. Price-Ferrell’s son, Austin, is 26 and got on the waiver waitlist when he was 15 – a product of applying when he was a toddler. “Austin has seizures all day long, so he has 24/7 staff.”
In addition to the Innovations Waiver, Austin benefits from FIRSTWNC’s supported living program, FIRST Key. Austin is able to live independently – outside of his parent’s house or in a group home – in a house he can call his own, with assistance there to help him take medications, handle seizures and overall support him live his life. The program started in April 2017 and made a house a home for a set of twins.
“They were served by another agency with a different service. Their hot water heater was regulated, they couldn’t have it above a certain temperature, their money was locked up and their meds were locked up. They had exit signs in their house,” said Price-Ferrell. “So when they started under our service, it’s their home. They rent it from their grandmother and they can finally take a hot shower.”
Programs like FIRSTWNC seek to fill the gaps where the government is unable to do so. Each waiver beneficiary currently has a $135,000 yearly limit, making the availability of waivers slim from a financial standpoint. A recent study found there were 13,138 waiver slots in use as of 2021, with around 15,000 awaiting an open one.
“It can take an individual as many as 12 years to receive a slot after being placed on the waiting list, which is called the Registry of Unmet Needs (RUN),” stated in the study’s executive summary.
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While the Innovations Waiver is vital to individuals like Kenneth in leading independent lives, it doesn’t help someone like Kaylie Prince; someone who isn’t looking for help but more so understanding from those around her.
Prince is a registered behavior technician (RBT) in Raleigh, N.C. She grew up in Sneads Ferry, N.C., a small town about 40 miles north of Wilmington that “just got a Bojangles.” Now 26, Prince wasn’t diagnosed with autism until she was 19 years old. The diagnosis only confirmed what Prince already was certain of. When her brother was diagnosed with autism as a teenager, Prince became curious of her own challenges.
“I love to research things, so I looked up [autism] and went – oh, it’s me,” said Prince. The behaviors common of autistic individuals explained some of her own tendencies such as struggling in social situations. Despite visiting TEACCH’s Wilmington Regional Center soon after he brother was diagnosed, doctors didn’t label Prince autistic.
“They misdiagnosed me with either bipolar or personality disorder,” said Prince in recalling the evaluation. It wasn’t the first time she was told she had something she didn’t. As a toddler, Prince would throw tantrums in the car when her parents opted for a way home outside their usual route. The tantrums – an effect of a change in routine – were labeled oppositional defiant disorder. It wasn’t until the end of her freshman year at Meredith College in 2016 that Prince received the diagnosis she knew she had all along. In order to receive accommodations at school, she’d need to undergo a psychological evaluation. After relaying her history to the clinician, Prince was referred to the Carolina Institute for Developmental Disabilities.
Unlike the little boy I watched behind a mirrored window, an evaluation looks a bit different in adulthood. Rather than a sole parent interview used to inform clinicians of a child’s behaviors, Prince and her mother were asked questions alongside one another. She recounted the difficulties she had growing up in retrospect.
“It was mainly the social skills, like difficulty in making and maintaining friends, and also taking things very literally,” said Prince. “I’m barely able to understand sarcasm unless it’s blatantly obvious … I’m able to give sarcasm, but I can’t really understand it.”
She also answered a number of questions regarding imaginative skills and rigidity.
“People are able to adapt to various changes in the environment and in their life, but most people with autism have struggles with that and need things to go a certain way,” said Prince. She understood this all too well from the car rides she’d take with her parents as a toddler. Breaking that proved overwhelming to Prince.
“My parents literally had to take the same road to a place and the same road back [or] I would engage in self-injurious behaviors,” said Prince. “I would bite and hit myself because of that change.”
In hindsight, the behaviors made sense to Prince through the scope of an autism diagnosis. She was rigid as a child the same way she is now. She leaves for work at 7:45 a.m. and drives 14 minutes to the job that doesn’t start until 9 a.m. Having been diagnosed earlier could have helped Prince in areas where she struggles, like with her penmanship, but the diagnosis didn’t change her self-perception. Rather, it only explained the traits that made her Kaylie.
“I knew I had autism, but it just made it more official and that was able to open doors for accommodations and for people to be more understanding, like ‘oh, this is why she’s socially awkward’ and ‘this is why she’s very blunt,’” said Prince. “But it didn’t really change how I felt, because I just knew.”
When a child has a speech impediment, it’s a tangible disorder. We can hear it. We can see it in their eyes as they wander toward the ceiling in search of a way to pronounce a difficult word. We don’t need a doctor to confirm they can’t pronounce their Rs, we instead just assist them in learning how to do so. And yet, this population time and time again has to beg others to see the world from their point of view and prove they’re deserving of life’s basic necessities.
“For the children, they mark, and the children, they know. The place where the sidewalk ends.” – Shel Silverstein, Where the Sidewalk Ends