NORWALK, Conn. — David Negron thought he had found a lifeline for his terminally ill daughter when he first learned about the Katie Beckett waiver.
His daughter, Chloe, was diagnosed with Tay Sachs, a rare neurodegenerative condition, at 3 years old. She quickly lost the ability to talk, walk and feed herself while also experiencing frequent seizures.
Doctors told the Negron family that they estimated Chloe would only live around two or three more years. Although devastated by the news, Negron said his family was determined to make Chloe’s life as comfortable and happy as possible.
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Connecting with other families in similar situations led Negron to the Katie Beckett waiver. This program provides Medicaid insurance coverage for children with severe disabilities or illnesses, thereby improving their access to necessary services and support to prevent hospitalizations. Negron said it’s an entry point into Medicaid’s expansive network, especially for children who previously wouldn’t have qualified.
More than 40 states have some form of the Katie Beckett waivers available to their residents; however, Connecticut is one of the few states that limits how many people can receive the coverage and has created a waitlist. Negron said it would’ve taken more than five years for Chloe to get the insurance access through Katie Beckett.
After learning how many other families face the same barriers to care, Negron turned to advocacy, sharing his daughter’s story with legislators, inspiring lawmakers to action. His efforts, along with those of the other family advocates, led to the creation of a working group and a set of legislative recommendations aimed at eliminating the waitlist over time.
Chloe died earlier this year at 6 years old, still waiting for that additional insurance as the state worked out how to get coverage for her and the 319 children on the waitlist.
“Caring for a child with a severe disability and is medically fragile is a 24/7 commitment. There’s no rest for families,” he said. “The hard reality is that … if she had autism, we would have gotten access to some state programs and support, but because my daughter had a terminal disease, we had no support from the state.”
How does this work?
The Katie Beckett waiver is one of the few programs available to children with rare diseases and is a lifeline for the people who access it, said Lesley Bennett, a member of the state’s Rare Disease Advisory Council.
Bennett noted that some families must choose between rent, food, medications, and medically necessary equipment, which may not be covered by private insurance. This is where waivers like Katie Beckett can provide extra support.
Started in the 1980s by former President Ronald Reagan, the idea was to offer Medicaid insurance to a child with a rare disease to help cover medical care needed to keep them at home, like nursing support, therapies and medical equipment.
Eligibility for the program is typically based on the child’s income, rather than the household income, as with traditional Medicaid rules, making it accessible to families who wouldn’t qualify. The level of care a child would need is also taken into consideration.
Most states use Katie Beckett under the Tax Equity and Fiscal Responsibility Act of 1982, allowing them to create an additional Medicaid coverage group for the population, without a limit on the number of eligible participants.
A handful of states, such as Connecticut, have established the program using a Medicaid waiver model, which provides residents with access to similar coverage or specific benefits, while also implementing a cap.
The state Department of Social Services, which runs the Katie Beckett waiver in Connecticut, said there’s a maximum of 342 spots. An average of six people apply each month, added to the end of a 319-person long waitlist. It typically takes around five years for families to access Medicaid through the state’s Katie Beckett program.
The wait for these services is excessive, Bennett said, noting that many children born with a rare disease don’t live to see their fifth birthday. At the same time, many of the diseases are degenerative, causing further complicated health needs over time.
“With all of these disorders, the sooner we can get these kids diagnosed. Even if there’s not a cure for them, a lot of times there’s a treatment system where we can make them more comfortable, make the family more comfortable,” Bennett said.
Waiting for a lifeline
Negron said his family rarely slept while trying to care for his daughter, Chloe, and working full-time jobs. He said their lives “fully revolved around trying to provide (Chloe) a safe and happy home.”
The employer-insurance he and his wife had, however, regularly refused to cover the medical equipment Chloe needed. Negron said he would buy used medical equipment second-hand that he’d find online and pay out of pocket.
“Some of the equipment was, frankly, denied because they didn’t know how long she would be able to use it for,” he said.
If his daughter had gotten the Katie Beckett waiver in time, Negron said it would’ve helped alleviate some of the pressure by getting Chloe more consistent access to the equipment and care she needed.
“It was a constant battle to be able to ensure that we had the supports that she needed to just be a happy girl for the time we had with her,” he said.
To those who make it off the waiting list, however, the Katie Beckett program is “life-altering,” said Molly Cole, executive director of the Connecticut State Independent Living Council.
Her daughter, Marie, was the first child to receive the Katie Beckett waiver in Connecticut when it was first established. Marie was born with Rubinstein-Taybi syndrome, a rare genetic disorder that impacted her heart. As she grew up, Cole said Marie developed other health issues, like seizures, and required regular care for her daily routine.
Cole stopped working to care for Marie full time and raise her other two children, too, but this meant there was a smaller household income to support them. In addition, she noted that the private health insurance they relied on would quickly max out due to the extensive medical support and treatment Marie required.
“We didn’t know how long we were going to last,” she said.
Cole learned about the Katie Beckett program after the first waiver was established in Iowa and worked with lawmakers to set up the program in Connecticut, which was created with only 50 available spots.
When the coverage came through, Cole said it improved the quality of life for their whole family. They were able to use the additional Medicaid insurance to help cover Marie’s equipment and bring nurses into their home. That additional medical support, Cole said, brought a sense of peace to their family and allowed them to spend time with Marie in a more holistic way.
“It’s really hard when you have a child with a disability and really complex medical needs to keep thinking of them as a person and not as this list of diagnoses. The more you get embroiled in doing the care, the harder it becomes to separate them out,” Cole said. “Once you have that nurse bridge in there and the backup that you needed, we were able to enjoy her. She didn’t have a long life expectancy. We initially anticipated she would die within six months, and she lived to be 18. It was a gift.”
Eliminating the list
Over the years, Connecticut’s waitlist has slowly grown as medical care improves and more children are living longer lives with complex rare diseases, Cole said. She added that a spot only opens up if the child ages out at 22 years old or, unfortunately, dies.
Inspired by the advocacy of families, like Negron’s, the state legislature created an official working group made up of lawmakers, parents of children with disabilities, representatives from DSS and medical providers to draw up recommendations to improve the Katie Beckett program.
The final legislative recommendations, which were dedicated in Chloe’s honor, varied from adjusting the age range of eligible recipients to establishing a waiver website portal. The state department is also tasked with developing a five-year plan and identifying the necessary resources needed to eliminate the program’s waitlist and introduce home modification coverage waivers.
Director of Community Options at DSS, Christine Weston, said the department is already taking steps in implementing the working group’s recommendations, adding that it’ll make the program more efficient and open up several spots quickly.
Weston noted that a major change would be lowering the age of eligible children from 21 to 18. She explained that individuals aged 18 or older who live with disabilities typically qualify for state Medicaid coverage.
She said they are working on creating an eligibility team that would help “seamlessly” transition the young adults using Katie Beckett into the traditional insurance coverage. The goal is to open up spots in the program while making sure the current participants don’t lose access to their benefits in the meantime.
“It’s really a great win,” she said.
The working group also flagged several opportunities for DSS to improve its customer service, Weston said. Several families expressed a need for more support in finding medical services during the waiting period, as well as regular updates on their position in the list.
“They asked for greater access to resources, which we’re aware of how to find the resources, but it seems like the families don’t always know where to turn,” Weston said. “We’ve committed to improving our website, which will be designed over the next couple of months, to be much more geared for families while you’re waiting for services or once you’re on services.”
Despite the good momentum, patient advocates say it’ll take time to implement the changes and eliminate the waitlist, meaning families will still be waiting. Negron said his primary concern is how long it’d take to access the funding needed to eliminate the waitlist and then roll out the plan.
“The reality is that this can happen to anyone. We never had any genetic illness in our family. Chloe was born healthy, and it wasn’t until a few years into her life that she developed signs of the illness,” Negron said. “My hope is that if a family was in a similar situation to us in the future, that they can purely focus on being the best parents they can be for their child, versus needing to fight for every aspect of their child’s medical care.”
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