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David Negron, Rennie Negron, Chloe Negron, Sen. Cohen and Rep. Rader
David Negron, Senator Cohen testify in front of the Human Services Committee
Today, State Senator Christine Cohen, State Representative Moira Rader and Guilford resident and parent David Negron testified in front of the Human Services Committee in support of Senate Bill 206 which would expand the Katie Beckett Waiver program to reduce the waiting list for program services.
David and Rennie Negron live in Guilford with their two daughters. Their daughter Chloe has Tay-Sachs disease. TaySachs is a very rare, terminal, neurological disease which occurs in about 1 in 320,000 live births in the United States.
The Negron family is looking to utilize the Katie Beckett Waiver program which 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. 37 other states actually prioritize certain individuals when a slot becomes available for medically fragile and terminally ill children. The way the waitlist is structured leaves some families on a waiting list longer than the child’s life expectancy, as is the case of the Negron family.
Senate Bill 206 would ensure every child has equitable access to the Katie Beckett Waiver program and would relieve the extremely costly burden these families face when providing at-home and medically necessary care for their child. The nonpartisan Office of Legislative Research determined that the individual cost for the waiver program was $25,400, with about 300 children on the waitlist, eliminating the waitlist would cost $8 million. Connecticut’s budget for FY 24 is nearly $26 billion.
“As a baby, Chloe met all of her developmental milestones and was a healthy child. She would laugh, play, speed down a slide and always dance with her big sister. She enjoyed playing with her friends at daycare, having fun coloring, painting and learning her ABC’s. She would also say “I love you’ but she can’t do any of these things now,” said David and Rennie Negron, parents of Chloe. “We are fortunate that we have had the ability to work and provide for our family, and we have already spent tens of thousands of dollars on Chloe’s care. There is no way we will be able to financially sustain her upcoming needs. Doctors have asked us if we would consider moving to another state with a more accessible program, but I cannot accept uprooting my children from the only home they have ever known because Connecticut has not yet prioritized supporting terminally ill children. I urge the legislature to bring Connecticut in line with its neighboring states and help my family and others allow their children to live and pass away with dignity.”
“David and Rennie have been extraordinary advocates for their daughter Chloe, in a fight that no parent expects to find themself in,” said State Senator Christine Cohen. “We shouldn’t be putting families in a position where they are having to determine whether or not they can afford a special therapy or medically necessary treatment during an already difficult and trying time. And yet, Connecticut is an outlier in this regard by putting a relatively small number of families on a waitlist that may not receive a waiver until it is too late. I firmly believe that the benefit of removing this barrier to services far outweighs the nominal cost to the state. The time is now for Connecticut to prioritize all children with terminal disease, such as Tay-Sachs, and to ensure that every child has equitable access to the Katie Beckett Medicare waiver program.”
“The Katie Beckett waiver program has been a lifeline for many families in our state, giving children with severe disabilities and illnesses access to the medical care and supportive services they need while remaining at home with their loved ones,” said State Representative Moira Rader. “However, the current waiver program has fallen terribly short in serving every qualified child. Per current data, the Katie Beckett waiver waitlist in Connecticut is over 300 and counting. Sadly, the urgent needs of many of those awaiting services may very well come too late for the most fragile and terminal children like Chloe Negron. These vulnerable children and their families are in desperate need of services, and it is unconscionable to make them wait when their time together is so very short and precious.”
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