A group tasked with recommending improvements for autism services in Kansas identify challenges during Tuesday’s inaugural meeting. The group will meet seven more times this year. (Screen capture by Kansas Reflector)
TOPEKA — Megan Bradshaw wants to make autism services more inclusive and eliminate red tape for Kansas families who need those services.
In her experience, being the mother of a 7-year-old girl with autism is a full-time job on top of her other full-time job, in the juvenile services division of the Kansas Department of Corrections.
“The worst feeling as a parent is going into meetings, and you have the diagnosis and all the paperwork that goes along with it, and having to still have people across the table tell you that your child doesn’t need or doesn’t meet eligibility to receive services,” Bradshaw said. “And then, as a parent, what do you do when you have a diagnosis over here and no services to address that diagnosis?”
She is part of an ambitious new project to identify and answer questions surrounding a systemic failure in Kansas to provide necessary care to residents who are diagnosed with autism.
The challenges are extensive, as identified in a Kansas Reflector report in June about the death of a foster child with autism. Many families are unaware of available support for children on the autism spectrum, and even well-informed parents struggle to find service providers because so few operate in Kansas. Just 65 children receive specialized services through a Medicaid program, while another 400 are on the waiting list.
Laura Howard, secretary of two state agencies that oversee the foster care system and disability services, initiated a series of meetings among service providers, disability rights advocates, state agency workers, and parents and foster parents of autistic children. They are tasked with creating recommendations for administrative functions, spending, policy and the workforce.
“What I’m asking you, really, is to develop recommendations to me for autism services in Kansas,” Howard said at the start of Tuesday’s inaugural meeting. “How we can improve those services, how we can improve access, what those gaps are — really a strategic roadmap for action.”
The Kansas Health Institute is organizing the eight meetings, which run through Dec. 14. About 50 people dialed into the initial video conference.
The group’s members outlined a vision for ensuring families have direct and clear access to information and a robust service network that adequately covers all areas of the state for people with autism across their lifespan.
Brenda Jackson, who has an autistic son, explained the need for a lifetime roadmap. Children might have access to great services, she said, but there is no help when they get out of high school.
“There’s nothing, and then when our caregivers start aging, and our persons with autism turn 50, we start seeing health problems,” Jackson said.
Jackson also pointed to “ad hoc” attempts to find services for people with autism in rural areas of the state. One of the goals should be simplifying access to information for all families, she said.
“It shouldn’t be up to you to know somebody who knows somebody,” Jackson said. “It should be a systematic educational process and outreach.”
Kathy Keck, a former foster parent, said she took in a lot of kids with intellectual and developmental disabilities, including autism. She often found herself spinning after trying to navigate various systems for disabilities and behavioral health needs.
Keck welcomed the opportunity to reshape the system to be family-focused instead of provider-centric. Many times when groups like this come together, she said, there are a lot of provider voices and not as many family voices.
“It’s easy for a group of professionals to sit around sometimes and decide what families need, but you really need to hear the voice of the families to know if that’s really what services they need or that can actually help,” Keck said.
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