According to the Kentucky Advisory Council on Autism, one in 36 children born nationwide is diagnosed with autism by eight years old. Advocates said of these children, many have profound social and intellectual disability and require more care options than the state currently provides.
In a recent Senate Standing Committee on Families and Children meeting, Kentucky lawmakers heard testimonies about the difficulty of obtaining autism care in the Commonwealth. Presenters said long wait times for diagnosis and treatment, alongside limited options throughout the country, have created an unnavigable landscape.
Rachel Moldoveanu, a former nurse practitioner and the mother of a profoundly autistic teenager, shared her story alongside practitioners and policymakers in February. Her son currently resides in a care facility in Kansas because of Kentucky’s lack of viable options. She said while attaining care for her son, she was pushed to relinquish custody of him to the state. Moldoveanu received legal counsel and was able to keep custody, but she said families like hers almost always feel like they have no other choice.
“Everyone is cornered into putting their kid into state custody, and I don’t believe that’s the right way,” said Moldoveanu. “If they can make a single case agreement for me and my family, why can’t that be the case for everyone? And what laws do we have, what hurdles are there to keep families from having to do this?”
Her family made the decision to place their son in that out-of-state residence because he was a danger to himself and others in their own home, and he is adjusting well. Moldoveanu said Kentucky is in dire need of a similar facility, one which accepts Medicaid and operates not-for-profit.
“I think it needs to be a facility that can serve the severe needs of our kids. I mean, my kid isn’t the only one. There are hundreds of families living day by day in crisis,” said Moldoveanu.
Moldoveanu adds her son, like many disabled Kentuckians, is a beneficiary of the Michelle P. Waiver, which gives financial assistance to families seeking treatment for their loved ones. However, the waiver does not provide funds for residential treatment.
While no formal action was taken, senators expressed their support, agreeing that restructuring autism care should become a key priority.