“We’re building a community
around the individual, and
that community involves
teachers and parents and
anybody else that’s important
in the person’s life.”
with autism onto a college campus through socializing with
other students and developing independent living support. The
training center has helped Concord and Shepherd universities
implement a similar program and has assisted roughly 50 other
universities around the country.
The second program centers around teaching families of
those with autism how to support all their needs by conducting
individual assessments, hosting workshops around the state for
those who interact with a person with autism and developing
behavioral support plans for the individual’s support system.
The center also developed a technical assistance center, which is
not autism-specific but is specific to positive behavior support.
Through this program, the center works with the West Virginia
Department of Education and hundreds of schools throughout
the state to develop leadership teams focused on improving the
culture and climate in those schools.
“We’re building a community around the individual, and that
community involves teachers and parents and anybody else that’s
important in the person’s life,” says Marc Ellison, executive
director of the WVATC. “We teach that community how to
support the individual behaviorally, socially, emotionally and
academically. Then, over a period of several months, we pull
back and leave that community standing around the individual.”
Finding Help at Home
There are also nonprofit, community-based training organi-
zations and clinics in the state working to provide the emotional
and physical support a family with a child that was recently
diagnosed with autism may need. What started as a school for
one child with autism has since grown into a clinic providing
ABA treatment to individuals with autism from around the
state. Bright Futures Learning Services (BFLS), founded by Jill
Scarbro-McLaury, provides early autism intervention programs
and precision learning for those with learning disabilities.
However, like many of the available services in the state,
BFLS has a long wait list. Families who are on the list could
wait months or even years before receiving the services they
need, requiring many seeking treatment to travel outside of the
state. On top of the already high price tag placed on services
for those with autism, this is an expensive resolution due to
high travel costs and the need for parents to take off work.
It was the services offered by BFLS that kept the Snyders in
West Virginia, but Lily was on the waiting list for five months
before being accepted into the program.
Seeing the effect this wait has on families who struggle
to provide care for their children, Scarbro-McLaury created
Community Autism Resources and Education Systems (CARES)
to equip families with training resources, provide funding to
train ABA providers to work in the Appalachian region and
offer financial assistance to individuals with autism, increasing
their ability to participate in clinical services and diverse educa-
tional opportunities.
“If you have a child with autism in the area, come to CARES.
It will point you in the right direction,” says Michael, who,
along with his wife, has become a strong advocate and fund-
raising volunteer for the organization since it started.
The Cost of Care
While CARES is trying to fill in some of the gaps, there is
still the added stress of paying for the care needed. According
to the CDC, medical costs for children with autism are, on
average, four to six times greater than for those without.
As of 2011, specified health insurers are required to cover
at least $30,000 every year for three years of treatment and
$2,000 per month after the first three years. However, according
to Michael, that amount doesn’t cover everything. The Snyders
pay $1,400 a month in insurance and more than
$10,000 a year for Lily’s therapy.
ExEdge
“Not everybody can do that, and it’s a struggle
According to
for us,” he says.
the National
According to the Mountaineer Autism Project Institute of
(MAP), a nonprofit in the state that focuses on Mental Health
the early detection and diagnosis of autism, it’s and the Centers
for Disease
estimated that fewer than 10 percent of children Control and
with autism have access to ABA therapy. This is Prevention,
a step up from the estimated 2 percent a decade autism
spectrum
ago, according to Poe.
disorder is
“MAP’s first goal was to grow insurance cover four times
age across West Virginia, and after a two-year- more common
plus effort, in 2011 we became the 25th state in in boys than
the U.S. to mandate insurance coverage for ABA in girls.
for children up to age 18,” she says. “It has taken Source: https:
a long while to get it up and running, especially //wvde.us/
with Medicaid, but it’s a start.”
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