Working group urges Connecticut to reduce Katie Beckett wait list, add public information and plan phased service expansions

State lawmakers, family members and Department of Social Services staff closed the Katie Beckett working group's final meeting on May 14 by recommending that the state prioritize reducing or eliminating the waiver's wait list, stand up a public information website and develop a multi-year fiscal plan before expanding waiver services.

The working group, convened by members of the General Assembly, also endorsed drafting a bill concept described at the meeting as "an act concerning the Katie Beckett waiver program working group recommendations." Representative Gilchrist told the panel the bill concept would be used to translate the group's recommendations into legislation and that staff would draft language for review.

Why it matters: Katie Beckett is the pathway that allows some families with medically complex children to receive Medicaid even when parental income would otherwise disqualify them. Parents and advocates at the meeting said the program is scarce and poorly publicized: several family members told the group their children's clinicians were unfamiliar with the waiver and that learning about the program often required extraordinary effort.

Department of Social Services staff described two immediate technical steps the agency is already pursuing. Paul (DSS staff) said the department is building a centralized website for Medicaid waivers, including a public-facing wait-list tool, and expects an initial launch in the summer for broader waiver content and roughly a year for the full web rollout tied to funding and authorization. Paul also said the current Katie Beckett age cap is 22: "The age limit right now is 22," and noted the program functions differently from other waivers because the primary waiver service is nursing case management while most covered services are standard Medicaid state-plan benefits.

Family members repeatedly urged opening more enrollment slots rather than reallocating current funding to add services. Leslie, a parent on the waiver, said she would prefer more spots on the roll: "I'd much rather see people on the list than get access to services," she said, noting the personal benefit she already receives from limited nursing hours and reduced co-pays.

Other participants argued for both goals: expanding access now while planning to add targeted services such as home modifications. Jennifer, a provider, and others said home modifications—ramps, accessible bathrooms and other work—are one of the most frequent unmet needs and can be costly; one participant noted that under the state's brain-injury waiver, home modification funding can reach about $15,000 every three years.

On transition rules, DSS staff described current practice and options. Paul said many participants who turn 18 are able to access Medicaid without the waiver because they qualify through disability rules and that the department already begins a transition process around age 17 to help families apply for Social Security disability. The group discussed a recommendation to start a structured transition process at 18 and to avoid removing people from the waiver until alternate coverage is confirmed; Representative Gilchrist said that transition language and website guidance would be included in the group's report.

Outreach and notification were a major focus. Participants recommended a public website with eligibility criteria, an explained application pathway, and an accessible wait-list status indicator; caregivers said the website must be easy to use for families juggling intense caregiving tasks. Paul described a no-personally-identifiable approach the department is building: the site will show relative wait-list movement and dates (for example, the year someone added to the list) to let families estimate wait times without publishing PHI. Participants recommended distributing printed brochures at hospitals and pediatric clinics, sending bulletins to providers through DSS's Medicaid provider channels and partnering with the Connecticut Rare Disease Advisory Council and professional groups such as the American Academy of Pediatrics.

Fiscal planning and next steps: DSS staff said they will provide subject-matter experts to help the legislature and working group quantify the fiscal impact of eliminating the wait list or adding waiver services. Several legislators and family members urged a phased, multiyear approach so the state can prioritize slots first while studying how and when to add services like home modifications.

The chair told members the working group will circulate a draft report including the recommendations, meeting history and supporting notes. The timeline discussed at the meeting called for a draft within days and a final report to the legislature shortly thereafter; the chair also noted the upcoming legislative schedule and holiday calendar could affect deadlines.

Votes at a glance: The only formal recorded vote in the transcript approved the meeting minutes earlier in the session. The minutes were moved by Molly and seconded by Senator Lesser; the chair called for "aye" and the minutes were approved (verbal vote; exact tally not specified in the transcript).