Kentucky considers Medicaid waiver for children with intellectual, related disabilities

by Sarah Ladd, Kentucky Lantern

During a crisis, parents of children with severe emotional disabilities must currently go to the hospital for help. 

They want the Kentucky Cabinet for Health and Family Services to offer a crisis hotline and crisis intervention services, among other services. 

This insight came from seven in-person and two virtual focus groups the cabinet and consulting firm Guidehouse hosted from May to June this year. The cabinet released a summary of its findings Friday. 

The cabinet is looking into the feasibility of a Medicaid home and community based services program for children who have severe emotional disabilities, intellectual or related disabilities and autism spectrum disorder. Staff held focus groups from May 22 to June 5 to better understand the needs these families and caregivers face. 

Such a waiver change wouldn’t require lawmakers to act, a CHFS spokeswoman said. But: “It would … require promulgation of a regulation and a submission of a waiver to the Centers for Medicare and Medicaid Services – and their approval.” 

Focus group participants recommended, among many other things, these services: 

Behavioral therapy Hydrotherapy Advocacy services Community living supports, including socializationCrisis intervention hotlineSummer camp with special needs childrenHome safety assessment Targeted case management Specialized day care 

Some focus group participants said they needed respite services, but low pay and high turnover, among other things, made it difficult to access such services. Specialized day care and summer camps, some said, could help with this. 

Meanwhile, the whole family needs better support. 

“A child’s diagnosis undoubtedly has impacts on the entire household,” CHFS said in its report. “Therefore, focus group participants said a children-focused program should also provide resources and supports to family members, such as counseling services and trainings for siblings.” 

Caregivers also “feared what would happen to their child once they passed away,” CHFS found. 

Some suggested there should be residential options for these Kentuckians once they turn 21. 

All agreed that there should be an “automatic and seamless transition to another waiver serving adults.” 

The Cabinet went to Lexington, Somerset, Prestonsburg (virtually), Florence, Louisville, Frankfort, Owensboro and Bowling Green for the focus groups. To read the full findings summary, visit this page

Kentuckians can direct questions about the report to

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