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In the far-west counties of the state, finding services for special-needs kids is a chore. The Family Support Network is up for the challenge.

By Taylor Sisk

It’s a Thursday morning in Robbinsville, the county seat of Graham County (population: 8,861, third-smallest county in the state, and well off the road to anywhere) and Jody Miller arrives for her monthly Graham County Local Interagency Coordinating Council meeting.

Rural Rx: NC Health News coverage of rural health issues. This week: The far west.

Miller is the Family Support Network of North Carolina regional coordinator for the state’s seven western-most counties and the Eastern Band of the Cherokee Indians’ Qualla Boundary, and she convenes these monthly meetings throughout her region. She chairs four interagency councils and co-chairs another.

Miller puts a lot of miles on her car. Her job is to connect families with special-needs kids to services, resources, support and one another. It’s very much about, in her words, “helping alleviate the feeling of being alone, isolated, no one to talk to.”

The Family Support Network has been around since 1985. Its services are free, and there are no income eligibility guidelines. In Miller’s region, the network is overseen by the Region A Partnership for Children, the nonprofit that administers Smart Start and NC Pre-K initiatives for that seven-county area.

UNC-Chapel Hill’s School of Social Work provides technical assistance and training to the Family Support Network and administers funding provided by the state Department of Health and Human Services.

Scarcity of services

Miller also spends a great deal of time on the phone. Finding what the families she serves need can be an arduous task. Health care services in general are scarce in this mostly rural, largely remote area.

Jody Miller helps families with special-needs children find services and support throughout Western North Carolina. Photo credit: Taylor Sisk

Neither Graham nor Clay County has a hospital. If you live in, say, Elf or Shooting Creek, in southeastern Clay, you can reach Murphy Medical Center in about a half hour, assuming the weather’s good. Winters can get rough up that way.

Neither Graham, Jackson, Macon nor Swain has a psychiatrist.

Miller serves in a variety of roles. She holds classes: on nutrition or sign language, for example. She enrolls families in the Parents as Teachers program. She arranges respite care when a mom and dad need a date night, or everyone could just use a break. She scours for financial assistance opportunities, maybe just enough to get a car safely on the road or keep the lights on.

Connected

Jessica Alexander of Franklin, in Macon County, met Miller at a sign language class.

Alexander and her husband, Isreal, have four sons. (As of this writing, Jessica was 40 weeks pregnant: finally, a girl.)

Their oldest son, Robert, is 9 and was diagnosed with Asperger’s syndrome. Joey, their 7-year-old, was recently diagnosed with ADHD. Their youngest, Sam, almost 2, came out of meningitis with total hearing loss in both ears and is adjusting to a cochlear implant.

“We’re struggling finding mental health services in our area that deal directly with autistic kids,” Jessica Alexander said. They’ve been traveling 70 miles to the Olson Huff Center, a division of Mission Children’s Hospital, in Asheville, for most of Robert’s care.

It was through the Family Support Network that the Alexanders found out about services available from the Autism Society. Someone now comes by twice a week and takes Robert out for some time away from family.

Miller has connected them with a variety of other services, including TEACCH, which helps Jessica and Israel better cope with behavioral issues. Miller also helped get Sam set up in the N.C. Early Intervention program.

Equally important is matching families in similar circumstances with one another. Miller holds family support groups in five of her counties.

“We want them to know they’re not the only one out there,” she said.

Jessica Alexander truly values those connections. She now attends a monthly family support group meeting in Franklin.

“It’s a good place to meet other parents,” she said, “to get together with other families who are facing similar situations.”

Widening the two-lane

“There’s no easy way to get anywhere from Graham County,” Miller said, while navigating Hwy. 143 out of Robbinsville. “They just have two-lane roads.” And public transportation is extremely limited throughout the region. Communication is critical to breaking down the logistical barriers.

The Alexanders: From left, Joey, Robert, Israel, Logan, Jessica and Sam. Photo courtesy the Alexander family

“I think we’re good at knowing what agencies are out there,” said Linda Neyman, Region A Partnership for Children’s project manager, “but we need to get better at knowing what each agency has to offer.”

Thus these monthly local interagency coordinating council meetings.

Attendees of today’s meeting included representatives from the public health department, the department of social services, the Partnership for Children, DHHS’s Division for the Deaf and the Hard of Hearing and Graham County Manager Greg Cable.

The group discussed what’s working and what’s needed. Each month, someone provides a presentation on their organization’s services. At today’s meeting, the group learned that Appalachian Community Services  – which provides mental health, substance abuse and developmental disability services in the seven counties – has a mobile crisis unit, which came as welcomed news to most in the room.

“Nobody knew about it, and it’s been there for years,” Neyman said, over a post-meeting lunch at Nate and Nick’s in Bryson City. “A lot of the families we work with need that type of service.”

The council has been at work on a strategic plan, using, Miller said, appreciative inquiry: “What would make this the ideal community? What’s missing and what can we do to make it happen?”

Among the council’s primary objectives is to create a definitive resource directory.

No more ‘Woe is me’

The farther west you drive, the more isolated the communities. There’s a big difference in Waynesville, for example, in Haywood County, just west of Asheville, and Robbinsville, up those two-lane roads.

Families with special-needs children, like the Alexanders, are subject to both geographic and social isolation, and the connections Miller and the Family Support Network make help fill the void.

“She’s kind of a central catchall for all things special-needs related,” Jessica Alexander said, “and she can dispense information that she thinks is pertinent.”

Also: “She found me a baby carrier, which was really cool.”

A lot has to be done with a little. “You don’t have to have a huge team to have an impact,” Neyman said. “It’s just getting the right voices there.

“That’s what’s been exciting about this whole process,” she said of the network building in general and the interagency council meetings in particular. “Sometimes it feels real slow …”

But they’re now more successfully spanning disciplines and geography.

“It’s identifying your strengths and then building on them,” Neyman said. “Instead of, like, ‘Woe is me,’ it’s, ‘Wow; look at us. We have all this.’”

Coming soon: Support in your child’s first days.

[box style=”2″]This story was made possible by a grant from the Winston-Salem Foundation to examine issues in rural health in North Carolina. [/box]

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