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OUR CHALLENGE
Aside from the struggles of watching our daughter’s health decline, we have also faced a harsh reality when it comes to what our state of CT has to offer children with rare medical conditions like hers. 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.
A Medicaid waiver will ensure that children can access necessary services and supports that are not always accessible through private insurance. Examples include:
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Night nurse support to improve end-of-life care and reduce hospitalization
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Access to increased therapies to maintain strength and mobility (PT, OT, Speech)
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Access to medical equipment to support complex home care
Katie Beckett Waiver By The Numbers
326
Connecticut is the only state in New England that caps the number of medically fragile children that can access this essential program. There are currently less than 350 families supported by the Connecticut Department of Development Services.
307
There are now approximately 307 medically fragile children like Chloe on what has historically been at least a 5-year waitlist. What this may mean for Chloe’s and other kids' future is uncertain.
~25k
Caring for a sick child has a significant financial, emotional, social, and physical toll on families. Providing the Katie Beckett waiver to families in desperate need of support for their kids only costs the state 25,400 per year.
Data Sources (updated 3/8/24): Waitlist data on neighboring New England states can be found on https://www.kidswaivers.org/;
Katie Beckett cost data is from OLR on 12/2023. The state cost for an individual on the KB waiver is approximately $25,400 per year.
Ways to Help Expand Access
PA 24-130 established a working group to study and make recommendations concerning the elimination or reduction of the waiting list for services in the Katie Beckett Waiver Program and establishing priority placements on such list based on illness and life expectancy.
Below are a few ways you can impact the recommendations:
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Sign up to provide verbal public comment at an upcoming working group meeting by emailing Chandra Persaud (chandra.persaud@cga.ct.gov).
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Next meeting: January 6, 2025 (2-3:30 pm) This will be one of the last meetings before the working group submits recommendations.
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Submit public comment (chandra.persaud@cga.ct.gov) for the working group committee to read.