Working to eliminate the Katie Becket Waiver Program waitlist
Connecticut is the only state in New England with a cap on the number of qualified children accepted into the Katie Beckett Waiver program. This program offers a Medicaid waiver to allow for coverage of medical expenses and supports that are essential to ensure quality of life, including therapies, equipment or nursing end-of-life care not always covered under private insurance for families with children who wouldn’t normally qualify for Medicaid.
Unlike other states that automatically grant a Medicaid waiver for children with rare diseases and disabilities, Connecticut's only non-income waiver (Katie Beckett) has a waitlist of at least 5 years.
We thank our community members and local government officials for their continued support. While there is more to do, this past summer, the state of Connecticut passed Public Act No. 25-42 to enhance the Katie Beckett waiver program, by:
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Raising adjusting age limit from 21 to 18 years old for program eligibility and requiring the Department of Social Services to enhance program transparency and accessibility.
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Requiring the Commissioner of Social Services to create a five-year plan to eliminate the program's waiting list and add home modification coverage for participants with disabilities, and submit a report to the legislature by October 1, 2026 with recommendations for implementing this plan.
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Creating a plan to improve access to information and other important resources to families across the state.
We are committed in seeing the changes take place as defined by this bill. We also will continue to advocate for a compassionate waiver for children with severe, life-limiting illnesses. We believe no family going through this should worry about getting the care their child needs. You may sign up here to receive information on how to stay involved in this effort.
Read more about the Katie Beckett advocacy: