For a Mother of a Down Syndrome Child, Health Reform Means a Tedious Wait

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Feb 27, 2010 No Comments ›› CKlein

For Nancy Shaw and her daughter Kacey, who has Down syndrome, the wait for health care reform isn’t about politics.

It’s about the health and financial well-being of her family.

Because her daughter’s Down syndrome was classified as a “pre-existing condition,” private health insurance companies declined to cover her medical care. As a result, Nancy cut back her Avon business to lower her income so she could qualify for Medicaid. That was the only way she could get help for her daughter’s serious health needs.

“Medicaid is Kacey’s only option for health care coverage. I have to keep my income around the federal poverty level, or else we don’t qualify and she has no health care coverage at all,” Nancy said.

Three months ago Nancy began volunteering for Arkansas Change That Works, a grassroots organization advocating for health care reform. At a rally in Hot Springs in December she spoke out against the cruelty of the “pre-existing condition” clause that so cruelly denies necessary medical care to a little girl. She also talked about how tough it is to intentionally inflict poverty on her family so she can get federal help for health care.

In the meantime, Nancy worries that the health coverage her daughter receives may not last. Recent news reports have raised the alarm that Arkansas Medicaid may cut benefits due to rising health care costs and budget shortfalls. Care for children like Kacey may be on the block.

Shaw says that she will continue to advocate for health care reform.

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