Sen. Lesser Leads Passage of Bill to Enhance Katie Beckett Waiver Program

Early Friday morning, State Senator Matt Lesser, Senate Chair of the Human Services Committee, led final and unanimous passage of legislation implementing the recommendations of the Katie Beckett Working Group, which Sen. Lesser serves as co-chair, ensuring families of terminally ill children are better served by the program.

The Katie Beckett Waiver program is administered by the Department of Social Services (DSS), and provides Medicaid healthcare services and supports to individuals 21 years of age and younger with a physical disability who may or may not have a co-occurring developmental disability. These services are for young adults and children who would normally not qualify for Medicaid due to family income. The purpose of the waiver is to provide home and community-based services to individuals who would prefer to reside in their home or in the community instead of an alternative institution.

Unfortunately, Connecticut is the only state in New England with a cap on the number of qualified individuals accepted into the Katie Beckett Waiver program. The way the waitlist is structured leaves some families on a waiting list longer than the child’s life expectancy.

This legislation to improve the waiver program came from the advocacy of Chloe Negron’s family. Chloe was a Guilford girl diagnosed with Tay-Sachs, a rare genetic disorder. Her father, David, testified before the Human Services Committee last year on the need to improve the program and served on the Katie Beckett Working Group. Chloe tragically passed away earlier this year.

The legislation passed requires DSS to develop a five-year plan to eliminate the waiting list for the Katie Beckett Waiver Program and add home modification coverage, as well as report to the Appropriations and Human Services Committee their recommendations on state appropriations needed to implement the plan. According to DSS, 331 people are currently on the waitlist.

Additionally, the bill lowers the maximum age for Katie Beckett participants from 21 to 18.

The bill also requires the DSS commissioner to include information on eligibility criteria and provider reimbursement rates for the waiver program in its Medicaid provider bulletins and to post certain information on the website.

Lastly, the bill requires DSS to annually administer a survey, via mail or e-mail, to applicants on the program’s waiting list, asking applicants to confirm or update demographic information and whether they wish to remain on the waiting list. Applicants who do not respond must remain on the waiting list.

“The Katie Beckett Program is a critical resource for Connecticut families who are faced with unimaginable tragedy,” said Sen. Lesser. “My heart breaks for any family with a seriously ill child. This bill will hopefully make life easier for some of them. I am very grateful to David Negron and all the members of the Katie Beckett Task Force for their wisdom and strength and glad we could send this bill to Governor Lamont for signing.”