Parents, providers and state officials tell committee Kentucky lacks in-state residential options for severely autistic youth

A committee panel on services for children and young adults with severe autism laid out gaps in Kentucky's continuum of care, including limited in-state residential options, workforce shortages, and long waits for diagnostic and outpatient services.

Rachel Molt Avenue, a Louisville mother, told the committee her son Frankie — diagnosed with autism at 26 months, now 15 years old, six feet tall and about 230 pounds — spent 56 days at Peace Hospital before the family arranged a residential placement in Wichita, Kansas. Molt Avenue said the placement at Heartspring was funded through Kentucky Medicaid. "The physical pain of being separated from your child ... should not be the case," she told the panel.

Molt Avenue described escalating behaviors, emergency hospitalizations and difficulty securing consistent in-home supports after the COVID-19 pandemic. She said her son was approved for 40 hours per week of community living supports (CLS) but that agencies could not provide adequately trained staff. Molt Avenue also said her family's private insurance denied coverage for the residential placement and that they had to secure a Medicaid single case arrangement and legal help to keep custody while arranging the placement.

Jennifer Hall, executive director of Key Assets Kentucky, described her nonprofit's model: seven group homes across Fayette, Scott and Jessamine counties with capacity for about 22 residents, each home designed for three youth and integrated in neighborhoods. Hall said Key Assets serves individuals with severe autism and intellectual disability and operates with a multi-week training and shadowing process for staff. Hall said the organization maintains a wait list and cannot safely accept some children because of staffing and severity. "I will not take in a child if I can't safely keep them," she said.

Eric Friedlander, secretary of the Cabinet for Health and Family Services, and Tal Curry, director for the Office of Autism, told the committee the cabinet shares the concern and is compiling an inventory of providers and placements. Curry said the Office of Autism is a single-person office within the cabinet and noted the state's advisory council on autism conducts related work.

Panelists and lawmakers discussed Heartspring in Wichita, which one witness said has a therapeutic school on campus and residential homes surrounding the school; the panel suggested the state could study other out-of-state providers as potential models. Lawmakers also mentioned training and workforce incentives, potential partnerships with universities that train applied behavior analysts and clinicians, and a 2021 task force that produced recommendations the committee may revisit.

No formal committee action was taken on specific legislation during the panel portion of the session; committee members said they intend to pursue follow-up information, provider inventories and potential legislative options including incentives or rate changes to encourage in-state capacity building.