Kansas City, MO – Parents of children with autism face many challenges in taking care of their kids who are often socially isolated and have difficulties communicating. The Autism Aspergers Resource Center used to be available for the more than 30,000 families in Kansas City dealing with autism. But the center, that drew people from around the country, recently closed its doors. Now families and agencies are scrambling to continue to get and provide services in light of the center's closing. KCUR's Kelley Weiss reports.
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Kirsten Sneid rushes around her Leawood home, hurrying upstairs to get the radio for her 11-year old son, Evan, so he can listen to music. Before playing his CD she takes a second to sing the Happy Birthday song with him. Next, she's off into the living room, quickly searching through a stack of videos to find his favorite, I Love Toy Trains, because Evan is now demanding to watch a video.
This is a typical day after school for Sneid, who has two boys with autism. Her youngest son, Evan, has a more severe form that leaves him nearly speechless while her 13-year-old Ian has Aspergers, a higher functioning form of autism. This shows the difference in the spectrum of the neurological disorder, Sneid explains, who is a board member of the Autism Alliance of Greater Kansas City.
Kirsten Sneid: "It's very chaotic, these kids, have seizure disorders, many of them have sleep disorders, tactile defensiveness - I said there's just enough chaos for everybody - so the needs are great and they permeate the entire family structure."
Sneid has Raffie Anderson, a home paraprofessional, come to her house to work with Evan to help him learn basic functions like reciting his ABCs or playing the board game Trouble.
But, Sneid says getting private services is expensive - her family spends more than $30,000 a year, which is not uncommon. Besides the huge financial commitments families face, Sneid says, finding services is a challenge in Kansas City, especially now that the Autism Aspergers Resource Center, or AARC, is closed.
Kirsten Sneid: "There has truly been no leadership in creating a system of care, a network of providers, that if you get that diagnosis you are tapped right in. That you are into a directory or into a service modality that not only is going to look at your child's issues, it's going to look at family issues, it's going to look at sibling issues, it's going to look at financial issues."
Denise Resnik is the co-founder and board chair of the South West Autism Research and Resource Center in Phoenix. Resnik says that AARC's closing will be felt across the country.
Denise Resnik: "AARC of Kansas City was a pioneer. There are few autism resource centers that exist in the country that are truly community based resource centers. And, we've learned a lot from AARC about community collaboration, about the huge demand, and about the resources that are required for our families impacted by autism."
Jennifer Currier, AARC's board president, says that many families, from around the country, are wondering what they will do now without the center.
At the Johnson County Developmental Supports office in Lenexa the room buzzes with a nervous energy as almost 40 people take their seats to see what the future holds for their children. They want to discuss resources in Kansas City for kids with autism.
AARC closed in late August and Currier says the resource center shut down because of financial problems. The center, which was open for 11 years and had seven full time employees and many volunteers, was a central hub for families to go to and get directed to a variety of services. Currier says AARC served about 100 families a month and fielded more than 3,000 calls from around the Midwest and the country. A trademark of the center was Camp Determination, one of the only summer camps in the nation specifically designed for children with autism. It was difficult to secure funds, she says, especially for an independent, non profit organization like AARC that continued to expand its services without increased money.
Jennifer Currier: "But when you grow you need to have funds and that's really where we were lacking is the funds - we had the knowledge, we had the volunteers, but you need the funds."
Currier addresses the group of concerned parents and agencies and shifts from one foot to another, fighting to control the quiver in her voice. She explains that she has two kids with autism herself and it was a difficult decision to shut down the resource center.
Jennifer Currier: "Unfortunately if it takes this by us closing, if this is what it takes, you know, thank god because this is what the families need. They need these services."
And many families and agencies are reporting the need for services and funding. Michelle Ponce, special projects manager for the Kansas Social Rehabilitation Services department, says the state is working on providing that funding through an autism specific waiver program. But, the waiver program still needs the governor's and legislature's approval.
In the meantime, families are wondering what they will do now, after a reliable resource center like AARC has closed and costs are mounting to treat a drastically increasing number of children with autism - the Autism Society of America reports it is the fastest growing developmental disability.
The AARC board will meet this month to discuss the future of the center and Currier says they want to reopen, maybe with scaled back services or they might combine resources with another agency. But, for now Currier and families across Kansas City will try to find ways to help meet the needs of the autism community.
Funding for health care coverage on KCUR has been provided by the Health Care Foundation of Greater Kansas City.
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