HARTFORD, CT – The Connecticut General Assembly’s Human Services Committee heard testimony from deaf advocates and the family of a terminally ill child suffering from a rare disease in an emotional session on Thursday morning.
HB 5241 would create a bureau dedicated to coordinating services for the deaf, hard of hearing, and deafblind, which would be housed within the state Department of Aging and Disability Services. A similar office existed until 2016, when it was terminated as part of the state’s cost-saving measures.
The state’s Advisory Board For Persons Who Are Deaf, Hard of Hearing Or Deafblind commissioned a study that was published last year that found that Connecticut has several shortcomings when it comes to providing services for residents who live with hearing loss and deafblindness. The report shows that deaf, hard of hearing, and deafblind residents face significant barriers in accessing health care, receiving interpretation services, and interacting with state agencies.
Harvey Corson, former president of the American School for the Deaf in West Hartford and co-chair of the advisory board, described the precarious state of services for deaf, hard of hearing, and deafblind residents in the state.
“There has been an issue of the state cutting services without looking at what’s the best for our community,” he said through American Sign Language and an interpreter. “I think the state itself and the agencies that were involved made some decisions that had severe negative impacts on our community. We are a very small minority in terms of population. And we are considered a low-incidence population. We don’t have a voice, and we haven’t had one for many years.”
“I think it’s worth noting as well that not only have deaf, hard of hearing, and deafblind people lost services at the state level, but also in the community and state college system. So for our students who look to advance their education, they often have little to no guidance on our college campuses either, and we are failing them,” Rep. Michelle Cook, D-Torrington, said.
SB 206 and Expansion of the Katie Beckett Waiver Program
Later Thursday, Sen. Christine Cohen, D-Guilford, introduced David Negron, who shared the story of his daughter to call for the committee to support SB 206 and provide greater support for families with terminally ill children through the Katie Beckett waiver program.
“In November 2022, my daughter Chloe was one of four children in the country diagnosed with a terminal disease called juvenile Tay-Sachs disease. It’s a rare genetic disease, and according to her geneticist, will lead to her passing away in the next two to three years. Her illness will take away her ability to talk, walk, eat, see, and live. We were unaware of the existence of the Katie Beckett program, and it is the only support offered to middle income families, as it is a non-income based program.”
The Katie Beckett Waiver Program allows the Department of Social Services to provide Medicaid services to individuals 21 years of age and younger who have a physical disability who would normally not qualify financially for Medicaid due to family income. The purpose of the waiver is to provide home and community-based services to clients who would prefer to reside in their home to receive care. Despite the needs that the program fills, Negron described the problems his family has faced trying to receive assistance.
“Connecticut is the only state in New England with a cap on the number of qualified, accepted youth within the Katie Beckett program,” he said. “I ask the committee how is it possible that every other state in New England all have Katie Beckett programs that would support my daughter tomorrow, but my daughter is on a waitlist that is longer than she will live?”
“David and Rennie have been extraordinary advocates for their daughter Chloe, in a fight that no parent expects to find themself in,” Sen. Cohen said in a statement. “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.”
Chloe Negron’s parents spoke about how dedicated they are to ensuring that the end of her life is as comfortable and loving as possible, but without support from the Katie Beckett program, their hope to care for their daughter at home is growing more and more remote.
“We have cleared our savings accounts, spending tens of thousands of dollars on her early medical care, but we will not be able to sustain her expenses in the future. We’ve been in touch with other families who have nearly gone bankrupt covering similar costs because their child died before they were cleared from the waitlist,” Negron said.
