FRANKFORT, Ky. — Legislators heard troubling accounts Wednesday of families across Kentucky struggling to access care for loved ones with autism, with one lawmaker describing parents forced to contact hundreds of facilities searching for help.

The Interim Joint Committee on Families and Children convened to hear from autism experts and stakeholders about the state's services for individuals across the spectrum. Representatives and senators posed questions about how to improve systems that currently leave many families in crisis.

Rep. Sarah Stalker, D-Louisville, described the desperation she has witnessed. "Just on my way up to Frankfort today, I took a call with somebody who has reached out to 349 – she's contacted on her own 349 facilities – to try and get help for her son who's about in the sixth grade," Stalker said.

Stalker expressed particular concern about children with profound autism, describing families in her district who have reached a breaking point. "I am probably in conversations with about five families right now who have children with profound autism, and they have found themselves in a situation where they've probably been in a crisis for several years," she said. These children are often nonverbal and display aggressive behaviors that facilities are not equipped to manage, complicating placement efforts.

Rep. Emily Callaway, R-Louisville, urged greater collaboration among state agencies and private sector stakeholders. "It seems like there should be more streamlining. There should be more cooperation between agencies and more of these types of discussions," Callaway said. "We need all of the stakeholders at the table."

According to testimony at the hearing, the Human Development Institute at the University of Kentucky presented data showing autism rates have increased dramatically. Federal health officials now estimate autism affects 1 in 31 children, compared to 1 in 69 in 2012. Educational classifications of autism in Kentucky schools have quadrupled since the 2008-09 academic year, with about 12% of Kentucky students with disabilities having an autism classification in the 2024-25 school year.

Groups testifying before the committee included representatives from the Kentucky Autism Training Center at the University of Louisville, the Kentucky Advisory Council on Autism, and the Cabinet for Health and Family Services. Officials cited long wait times and costs as major barriers to diagnosis.

Shannon O'Connor, executive director of the Kentucky Association for Behavior Analysis, expressed support for recent legislation aimed at collecting accurate provider data and enforcing compliance among Medicaid managed care organizations. However, she stressed that implementation would be critical to success.

Dr. Steven Stack, secretary of the Kentucky Cabinet for Health and Family Services, emphasized that solutions require collaboration across government, education, families, and the legislature. "We can't build a facility, even if that was recommended by a multi-stakeholder group without the resources to build it," Stack told the panel.

Sen. Amanda Mays Bledsoe, R-Lexington, acknowledged the challenge of developing standardized care for such a diverse population. "If you've met a kid or a teenager or adult, you've met one person with autism," Bledsoe said. "How they present the issues that get them above the line is very different in every single situation."