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What Are You Trying to Tell Me? Neurodevelopmental Disorder Care Across North Carolina

MAY 2023

Access to medical services wanes the farther one lives outside of metropolitan centers. In western North Carolina, it is the school system and a sharp staff that keeps developmentally delayed individuals supplied with care. 

In early February I traveled to western North Carolina wanting to learn where a developmentally-delayed child goes for services in a more rural part of town. As my three-day visit came to a close, I made one last stop on my way back to the Triangle: Burnsville, N.C. The rural town sits 45 minutes northeast of Asheville with a population of about 2,000 as of 2020.


On my way to the town nestled at the foot of the Blue Ridge, I drew a mental image of what I imagined I’d encounter. Kacey Musgrave’s song “This Town” painted my picture. In it, she sings:


Big enough for a zip code, a VFW

A good Mexican restaurant, a beauty shop or two

Got a Methodist, a Baptist, and a Church of the Nazarene

Aw, but don’t you forget it, as big as we’re getting

This town’s too small to be mean


The song is a nod to a small town in Texas and the “everybody knows everybody” adage that permeates its land. Burnsville, I’d learn, wasn’t all that different.


“… and they’re related,” added Julie McKinney, an Exceptional Children teacher in the town.

.           .           .


I drove to Burnsville by way of Marion. NC-226 connects the two towns and winds through mountainous terrain. The two-lane highway was barren, providing little comfort for solo travelers like myself. I enter survival mode when venturing to places I’ve never been and find comfort in highway signs showing the nearest Walmart or Wendy’s; I’m not a fan of either, but they’re comforting logos to see in remote places. I kept the thought of breaking down in the back of my mind, but these icons were a safe haven I liked having close to the front. On NC-226, however, they were sparsely found.


The road between the two towns was intimidating. Just in the middle lies a steep mountain you have to cross in order to reach Burnsville. I looked forward to descending the mountain throughout my entire ascent. I passed mobile homes, the Museum of North Carolina Minerals and an 18-wheeler that flipped on a sharp corner. As the path gradually sloped downward, I could breathe a sigh of relief.


I headed to Burnsville to meet Eliza Smith* and Julie McKinney, Exceptional Children teachers at elementary schools in town. The Office of Exceptional Children is the state’s public instruction division for students with disabilities. The pair, I hoped, would provide insight into their work and what living in a town with few resources – let alone those that were medical – entailed.


After making it past the mountain and  arriving in Burnsville , I found myself driving uphill once more. The roads were narrow and sporadic stop signs kept me from turning into driveways or hitting passing cars. It was the kind of drive where your foot hovers over the gas pedal as often as it does the brake; if I were to hesitate too long before pressing the gas, I was afraid I’d move backward.


The Yancey County Public Library was located at the top of the hill. I walked in as the school day came to a close around 4 p.m. I sat in the computer section waiting to greet Smith and McKinney. An elderly man sat across the room with many belongings surrounding him; it was evident he had been there all afternoon at the least. A young father brought his elementary-aged son to a computer to complete homework. The library, it appears, was the source of internet for both parties.


Smith arrived first alongside her 3-year-old daughter, Darby. After greeting one another, we headed to the children’s section where Darby could remain occupied on a computer while we spoke. Throughout our interview, she’d play dress-up with the Berenstain Bears online. She got up more than once to ask her mom a question. “Honey, click on the head and then push the button,” my tape recorder caught Smith saying, trying to help her daughter from afar. About halfway through the interview, Darby looked elsewhere in the kid’s section for fun.


Joining Smith and me was Julie McKinney. Smith works at Micaville Elementary and McKinney at South Toe – both of which are located in Burnsville. The two were a funny pair with years of life separating their demeanors and their mutual love of teaching keeping them close. Smith is in her 12th year of teaching special education, while McKinney in her 28th. McKinney worked as a classroom teacher for years and eventually earned her master’s in library science from East Carolina University. Afterward, she was a school media coordinator for 10 years.


“I love working with kids,” said McKinney. “That was always my thing. My brother is totally blind. He grew up just special needs, IEPs, you know, a lot of things. He had some sight growing up. He was the first student to graduate from McDowell High that was visually impaired.”


“McDowell High? I think I passed that today, are they the Titans?” I’d ask McKinney.


“You did,” she’d reply. “You passed by everything.”


While I reached out to each instructor individually for an interview, I would later learn the pair were friends.


Smith was soft-spoken and gentil, as was McKinney. In addition to Darby, she had a 6-month-old daughter at home. Add a pair of glasses and make auburn hair blonde to Dolly Parton’s nemesis Jolene, and you’d have McKinney with her smile like a breath of spring and voice soft like summer rain. With a southern cadence illuminating their soft-spoken words, the pair reminded me of characters from “Because of Winn Dixie.” They lived in a barren town, yes, but their wit and knowledge did not fall short.


The question I asked myself throughout my drive to Burnsville plagued me through our interview. Where does someone go here when they’re in need of developmental-related services?


“Asheville,” answered McKinney.


While Burnsville appears just on the outskirts of Asheville, it’s about 45 minutes outside of town coupled with narrow roads that wind through hills. In addition to physical barriers, the routine of everyday life makes traveling 45 minutes anything but simple between work schedules, the school day and added challenges a disabled child may fare.


“We have kids who unbuckle their car seat,” said Sallie Nowell, the research scientist at the Frank Porter Graham Child Development Institute, in describing the transportation barriers to care.


To put it in context, the Carolina Institute for Developmental Disabilities is located in Carrboro, N.C. and evaluates children from all over the state. Orange County is the most densely-populated region of primary care physicians in North Carolina, with more than 18 providers per every 10,000 people, according to the Rural Health Information Hub. So what happens when a child lives in a place like Burnsville? A place where there exists only a handful of professionals who can provide an evaluation?


Making do, is what happens. Despite the unique challenges a more rural area faces – less resources in an educational setting and less stores to buy clothes from, said McKinney, in a pragmatic one – the school system seems most equipped. It’s reaching the larger institutions to get a diagnosis that’s straining.


Smith’s daughter who sat at the library with us went to speech therapy prior to entering preschool. “Went to therapy” isn’t quite what she did though.


“When she was two, we didn’t have any local speech therapists,” said Smith. “The closest one was like past Boone so we did speech therapy virtually.”


“North Wilkesboro? That’s almost two hours from here,” said McKinney, epitomizing my interest in this topic to begin with.


Smith’s then 2-year-old daughter would complete speech therapy virtually. This became an act of trying to get her toddler to look at a therapist on a screen and practice her sounds – a doctor’s visit done outside the clinic. Now that Darby is 3, however, she does speech therapy at school with a therapist who serves the county.


Smith doesn’t provide speech therapy as an Exceptional Children teacher, but she is a major stakeholder in providing children with various delays the help they need. She has 45-minute reading and writing classes throughout the week, 30-minute math classes and several skills-building classes outside of traditional academic topics, such as social emotional lessons. Smith is in her 12th year working with students of all ages and conditions. This year, she has a caseload of 26 students and primarily helps children with learning disabilities. In the past, she’s worked with students who have autism, oppositional defiant disorder (ODD) and who are visually or hearing impaired. This work is Smith’s bread and butter.


“And she’s awesome at it,” McKinney added. “She is such a wonderful resource.”


McKinney does similar work, in addition to testing.


“So I have 14 kids, 14 versions of school,” said McKinney. “I do the same thing as [Smith] does four days a week, and then on Monday’s, that’s my test day. I go around to different schools to whoever needs an educational test and it’s my favorite thing to do.”


“She’s trying to sugarcoat it,” Smith chimed in. “She’s our educational evaluation person for the county.”


If a child like one Smith works with is struggling, McKinney uses the Kaufman Test of Educational Achievement (KTEA) to learn more about those struggles.


If a parent wants their child medically diagnosed, however, we’re brought back to the carousel once more, decorated with long waitlists and longer commutes than those found in more metropolitan areas.


While TEACCH has eight regional centers throughout North Carolina, its Asheville location serves the entire western end of the state. A town like Murphy, N.C. sits just east of Tennessee and hovers above the Georgia border. It might be much closer to Asheville’s TEACCH Center than CIDD in the Carrboro … but it’s still two hours away.


“Asheville is sort of the city of western North Carolina. A lot of the organizations here, including TEACCH, have a wide catchment area that covers the far western counties because there is really nothing there,” said Austin Holder, an autism resource and referral specialist at TEACCH’s Asheville Regional Center. “Typically, their health care structure is a couple of primary care physicians – a couple of those counties have a hospital and some sort of very minimal mental health services.”


Taking the lack of centers and evaluation duration into consideration, it comes as no question why waitlists run so long.


“There are a couple of factors that go into decisions around [the waitlist],” said Holder. “We generally try to go in order from the time that we get a referral, but there are instances in which we prioritize based on the individual situation, such as the risk of losing necessary services.”


When institutions like TEACCH are overwhelmed with referrals, it’s the community, McKinney advised, that ensures no child falls through the cracks.


“What [the community] lacks in resources, I think they make up in other ways. Caring, and just hard work, and being helpful. It might not be the newest and latest thing as far as resources go, but they make up for it in so many other ways,” said McKinney who’s considered retirement many times over. “And that’s why I stayed.”

.           .           .

Educators like Smith and McKinney empowered Amy Henderson, a junior at the University of North Carolina at Chapel Hill, to improve her speech as a child in Lenoir, N.C. Lenoir is slightly larger than Burnsville, but still a rural mountain town with a little more than 18,000 residents.


“So I had an extra tooth between my two front teeth,” said Amy when we spoke about her speech impediment. Two’s company, three’s a speech impediment. Amy recounted what it was like to grow up with a speech impediment as a child. Rather than something to be embarrassed or ashamed of, Amy recounted her memories of going to speech therapy with laughter. It was merely another thing she had to do as a child.


When it came time for lunch, Amy and her fellow “speech kids” had thirty minutes to eat. Halfway through the lunch hour, they were responsible for walking to the school’s speech therapist’s office. She recounted memories of speech therapy fondly. The speech kids made flashcards alongside the therapist with each card having a word labeled level one through three: one was the easiest to pronounce and three the hardest. For Amy, she struggled with pronouncing Rs. A level one flashcard might have disguised the R, nestling it between other letters. But once she advanced to level three, she’d have to pronounce a word that began with an R.


“We would get so excited if we walked in and it was game day,” said Amy in reflecting on her time spent in the speech therapist’s classroom. “There was a board game of ‘I Spy’ that I never knew existed until speech therapy … I thought it was just a road trip game you played with your family.” Amy and her classmates would have to find objects with names that included the sounds they struggled with.


“Like ‘fire hydrant’ if someone was doing Fs or … ‘creek’ if someone like me was doing Rs or … not necessarily a Waldo, but just someone with a red hat,” said Amy.


Over time, Amy’s pronunciation of her Rs and Ws improved. I wouldn’t have picked up on a speech impediment when I interviewed her had that not been the subject of our discussion. Memories of her early impediment shaped her childhood experiences, and even decorate her family’s home in Lenoir to this day.

Each December, Amy and her classmates would make Christmas ornaments, decorated with whichever letter was “theirs.”


“We would have stencils of the letters A through Z,” recalled Amy.” And for me, we would just always choose R because for like three years, R was the only sound I worked on.”

.           .           .


Early intervention allowed Amy to get off the carousel many individuals with developmental disabilities are still on. Proper intervention and a support network that encouraged her growth enabled her to improve her speech, while also acknowledge it was another personality trait that made Amy, Amy. When we ask those like Kenneth or Kaylie to ride after the park has closed, they’re unable to do the same.

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