By Todd Cohen
RALEIGH, N.C. — In their long session that convened January 9, state lawmakers are expected to consider a bill that would require private health insurers to cover treatment related to autism.
That requirement would cover costs that can exceed $50,000 a year for some families and on average would add 31 cents a month to costs for all people insured by companies that offer autism coverage in the 32 other states that have passed similar legislation, says Tracey Sheriff, CEO of the Autism Society of North Carolina.
The legislation, he says, is important in the face of continuing growth in the prevalence of autism, which affects one in 88 individuals in the U.S., including over 60,000 North Carolinians, up from one in 150 in 2000.
Founded in 1970, the Autism Society provides advocacy, training and education, and direct services for individuals with autism and their families.
The Raleigh-based agency operates with an annual budget of $16 million and a staff of 125 people working full-time, 525 working part-time, and 50 to 75 seasonal employees who work at its Camp Royall in Chatham County.
With five regional offices and five satellite offices throughout the state, the agency in the fiscal year ended June 30, 2012, served nearly 11,000 people with autism, a developmental disability characterized by difficulties in understanding social relationships and interactions.
The Autism Society, for example, employs 18 parent advocates who serve parents of children with autism in all 100 counties in the state, providing support for children throughout their lives.
It also operates 49 chapters, all led by volunteers, that serve families and provide peer support in 66 counties.
And it serves an advocate on public policy issues, including the shift to managed care and the impact it will have on families living with autism.
The agency also provides workshops, conferences and consulting for individuals and families, as well as training for organizations ranging from schools, libraries and churches to medical practices, hospitals, child care providers, and employers. And it operates a bookstore, the largest in the U.S. on autism, that offers 700 titles and last year sold 5,000 items.
It provides residential housing for 25 adults in seven communities, as well as job training, “day programming” for people with autism not ready for competitive employment, and community-based services, mainly for children who live at home.
And its 38-year-old, 133-acre Camp Royall, the oldest and largest camp in the U.S. for people with autism, served 350 adults and children from ages 4 to 64 last summer in 10 one-week sessions, and also serves another 650 people during the rest of the year.
The Autism Society generates $10.3 million in Medicaid reimbursements for its community-based services, housing, and day programs, and $3.3 million through a state contract to help underwrite its advocacy services for individuals and families, its camp, and its training and education services.
It raises another $1.4 million through fundraising, including nearly $150,000 that supports scholarships at Camp Royall.
In December, it raised over $72,000 in its first formal annual fund campaign, double the total it raised a year earlier in its traditional year-end appeal.
It also received a three-year, $100,000 gift from Gregg and Lori Ireland in Chapel Hill through their Ireland Family Foundation to create the position of clinical director, which will be filled by Aleck Myers, the former director of the state’s Murdoch Developmental Center in Butner.
And with founding support from Evernam Family Racing for a Reason, it is launching a program in Davidson that will serve young adults with high-functioning Autism or Asperger’s Syndrome, a mild form of Autism.
While some autism organizations focus on medical research, the Autism Society focuses on supporting people living with the disorder, says Kristy White, the agency’s director of development.
“We are looking to improve the lives of individuals with autism, support families affected by autism, and educate our community,” she says.