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Foundation to assist families of adults with Down syndrome

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Sylvia Ann Thornton has been living with Down syndrome since her birth in 1953. A healthy and vibrant member of her Lebanon community until 2009, when her mental and physical dexterities began to decline, Sylvia now requires total in-home care. Her primary caregivers are her parents, 85 and 80 years old, respectively.
“I realized when Sylvia began to decline what some of the needs of the Down syndrome community are, so I decided to launch a foundation to assist families like Sylvia’s who are choosing to keep their loved ones in a home health environment, but who are faced with steep challenges,” Lisa J. Houston, board president, said last week when she announced the creation of the Sylvia Ann Thornton Foundation. Houston is Sylvia Ann Thornton’s sister.
“While Sylvia will not receive benefits from the SAT Foundation, the foundation seeks to provide support to other families with adults who have Down syndrome and are in a home health situation where funds are limited and there are other challenges,” Houston said.
According to Dr. Kapauner Lewis, a member of the SAT board of directors, in 1983, the average lifespan of a person with Down syndrome was 25 years old. Today, the average lifespan is about 60 years old. The dramatic increase is due not to the miracles of modern medicine, but to ending the inhumane practice of institutionalization in deference to home and community care, Dr. Lewis said.
“The concession is that people with Down syndrome age earlier than most, and many are being cared for by increasingly aging families,” he said. “The mission of the Sylvia Ann Thornton Foundation is to support the quality of life of an aging Down syndrome population.”
Houston’s sister has been able to remain at home with her parents thanks to funding from the Michelle P. Waiver Medicaid program, which has allowed Sylvia to receive quality care at home. More and more parents and caregivers are choosing home health options, Houston said, because it helps to keep their loved ones in a wholesome environment and, in most cases, helps to minimize costs.
However, there are limitations to the Waiver program. If families do not have supplemental insurance, those limitations can pose a hardship, she said.
The SAT Foundation, which is a registering 501(c)(3) organization, will provide supplemental services where those limitations exist.
Those services will include informational resources; support for home modifications; and support for outside activities based on established guidelines and needs assessments. Families may apply for these supplemental services through the foundation beginning July 15, 2015, with decisions made in the final quarter of 2015. The foundation will examine each request on a case-by-case basis. Funds will be released to the service provider. Applicants must meet the following criteria:
• Adults with Down syndrome in a home health environment supported by aging parents or primary caregivers
• Adults with Down syndrome who are referred by a social worker, support broker or home health support personnel
• Adults with Down syndrome who are on an ephemeral wait list period for benefits
• Adults with Down syndrome who have been denied benefits
For more information, go to the foundation’s website www.satfdn.org.
The SAT Foundation is a charitable public organization. Tax-deductible donations may be sent to: The Sylvia Ann Thornton Foundation, 3044 Bardstown Road, Suite 1282, Louisville, KY 40205