Guilford Parents, Officials Testify In Support Of Senate Bill 206

GUILFORD, CT — State Sen. Christine Cohen (D-12), state Rep. Moira Rader (D-98) and Guilford resident and parent David Negron testified this week in front of the Human Services Committee in Hartford in support of Senate Bill 206, which would expand the Katie Beckett Waiver Program to reduce the waiting list for program services.

David and his wife Rennie Negron live in Guilford with their two daughters. Their daughter, Chloe, has Tay-Sachs disease, a very rare, terminal, neurological disease which occurs in about one in 320,000 live births in the United States, a news release from Cohen's office said.

The Katie Beckett Waiver Program is administered by the Department of Social Services. It provides Medicaid healthcare services and support 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.

According to a news release from Cohen's office, Connecticut has a cap on the number of qualified individuals who are accepted into the Katie Beckett Waiver Program.

Thirty-seven other states prioritize certain individuals when a slot becomes available for medically fragile and terminally ill children, the news release said. 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, Cohen noted.

Senate Bill 206 would ensure every child has equitable access to the Katie Beckett Waiver Program and would relieve the extremely costly burden families face when providing at-home and medically necessary care for their child, the news release said.

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 ABCs. She would also say 'I love you’ but she can’t do any of these things now," said David and Rennie Negron, according to a news release.

"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," the Negrons added.

"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."

Cohen said Connecticut "puts 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," she added. "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."

Rader called the waiver program "a lifeline" for many families, but the current struture "has fallen terribly short" in serving qualified children.

"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," Rader said in a news release. "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."

More information on Senate Bill 206 can be found here.