Rice bill aims to fund programs for patients with younger-onset Alzheimer’s disease

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U.S. Rep. Kathleen Rice proposed a bill that would fund programs for patients with Younger-Onset Alzheimer's Disease. (Photo courtesy of Kathleen Rice)

When Karen Henley’s husband was diagnosed with younger-onset Alzheimer’s disease at age 36, she had nowhere to turn to find services for him, she said.

A bill proposed by U.S. Rep. Kathleen Rice (D-Garden City) may help the approximately 250,000 Americans like Henley’s husband who are diagnosed with the disease.

“When I contacted the Town of North Hempstead Services for the Aging seeking in-home care for my husband, they were eager to help until they asked me for his date of birth,” Henley, a Westbury resident, said in a news release issued by Rice’s office. “Upon hearing his age, they explained that they only offered services to those 65 and older.”

Henley’s husband died at 47 in 2012 due to complications related to his disease, according to Newsday.

If Alzheimer’s doesn’t discriminate against age, “than neither should our government agencies,” Henley said.

Rice’s bill, the Younger-Onset Alzheimer’s Disease Parity Act, would amend current law to allow government funding of programs available to Americans under 60 living with Alzheimer’s or similar degenerative diseases.

Currently, the Older Americans Act, originally enacted in 1965, supports community-based programs for the elderly – including programs that benefit traditional Alzheimer’s patients.

Older Americans Act programs are only available to those 60 and over.

“Every American living with Alzheimer’s disease deserves access to the best available care, regardless of their age,” Rice said in a news release.

People diagnosed with younger-onset Alzheimer’s disease can show symptoms as early as in their 30s, Rice said.

Many of those patients still have “young children, new homes and growing careers,” she said.

“Virtually overnight, these individuals and their families face unimaginable financial strain,” Rice said. “…These families should not be denied help simply because of their age – they need access to these resources and this bill would make that possible by amending the OAA to finally serve younger Americans living with this disease.”

Rice announced her proposed bill on July 30 at a news conference held at the Long Island Alzheimer’s Foundation headquarters in Westbury.

She was joined by Henley, as well as representatives from the Long Island Alzheimer’s Foundation, the Alzheimer’s Association and the Sid Jacobson Jewish Community Center.

Connie Wassermann, a licensed social worker and executive director at the Sid Jacobson center, said that Sid Jacobson created its own program to help those living with younger-onset Alzheimer’s since government funding doesn’t serve those patients.

“Alzheimer’s and other dementias can affect any one at any age – they do not discriminate,” Wassermann said in the release. “…We are grateful to Kathleen Rice for listening to the plight of younger families and for responding.”

If approved, the bill would allow Sid Jacobson to “serve more families and offer more resources to those who desperately need them,” Wassermann said.

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