Advocacy group drawing attention to county's disabled

Apr. 24, 2013 @ 08:22 AM

She remembers the travails her parents faced while raising a child with a developmental disability.

And as she grew older, Susie Lenfestey at times was provoked to fistfights with classmates whom she said mocked the tendencies of her older brother, Frank, who was barred from public school nearly 60 years ago as a result of a disorder that until recently was undiagnosed.  

“There were no classes for one’s like Frankie” in the public school system, said Lenfestey, whose parents for years hoped “for five minutes to just get inside his brain.”

She has since taken the role of her mother -- whom she remembered organizing in a Pennsylvania diner groups of as many as 100 parents fighting to prevent their disabled children and other family members from entering state institutions in the 1950s -- as the sole caregiver of her brother, now 64. Doctors diagnosed his condition two years ago as Smith-Magenis syndrome, which can severely affect brain functions controlling speech and other behavioral characteristics.

Now, that spirit with which her mother raised awareness about the disabled has helped Lenfestey draw attention to her advocacy group, the Breakfast Club, which was selected by the federal government in January to help organize one of eight health clinics for people with intellectual and developmental disabilities across the state. The Lenoir-based nonprofit is focused primarily on referring adults with a range of disabilities, from autism and cerebral palsy to Down syndrome and other symptoms, to service providers across the region.

The group is working with Caldwell Community College and Technical Institute and The Arc of North Carolina, a part of a national nonprofit with more than 30 chapters across the state, to prepare for the health clinic for the disabled, the only one that will be held in western North Carolina. It is scheduled for May 4 at the J.E. Boyhill Center. Doctors and other caregivers will be available to offer screenings and other services as part of an effort in five states by the Centers for Disease and Control and Prevention to gather data, in part to gauge the prevalence of such disorders across the country.

In Caldwell County, about 150 people people with some kind of intellectual or developmental disability receive services from the Smoky Mountain Center, which serves a total of nearly 1,200 in 15 counties across western North Carolina. The agency refers people with disabilities, covered under Medicaid or under state funds, to service providers across the region.

As of last year, the Caldwell County Schools had slightly more than 1,450 students, or between 10 and 12 percent of the more than 12,200 students, who were reported by physicians or other specialists as having at least a small level of intellectual or developmental disability, ranging from hearing and speech impairments to emotional and intellectual disabilities, according to a report by the Caldwell County School's exceptional childrens program.

Lenfestey and others say a significant number of uninsured people with disabilities go unnoticed as a result of what she described as rigid mental and behavioral health care services enforced by the state and federal government.

She maintains that the burden of people with disabilities, unlike some coping with mental illness and substance abuse problems, is perpetual.

“Our loved ones wake up everyday -- and that’s the way it is for them for the rest of their lives,” Lenfestey said.

That has remained a reality for Lisa Carroll of Claremont, a mother of a 15-year-old who developed a mild intellectual disability as a child after falling ill. Carroll, who has attended the group’s gatherings for the past year and a half, equated the struggle facing people with disabilities like her daughter, Sabrina, to that of other groups calling on lawmakers for help.

She said the only difference, though, is that other advocates “can turn out in large groups because they don’t have someone to care for” as intensively as people with disabilities, who she said struggle to navigate basic public services like transportation.

For Debbie Moody, questions like, “What is going to support your loved one when you’re no longer in the picture?” have for long added to the uncertainty of caring for her 14-year-old daughter, who has Down syndrome.

“I think anyone that has anybody disabled in their life, ... their greatest fear is that they’re going to live one day longer than you,” Moody said.  

But she has found some consolation in support from the group, which she said as helped her cope with the circumstances, if only temporary, facing her daughter.

“You want for them what you want for the typical child,” she said, “and you know that’s not quite how it is."

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HEALTHMEET

The HealthMeet is scheduled 10 a.m.-4 p.m. May 4 at the J.E. Broyhill Civic Center on U.S. 321 in Lenoir. Participants must present written consent from a guardian to receive screenings and other services. For more information, contact Susie Lenfestey at 828-572-1187 or visit www.tbcidd.com.