Senate reforms threaten my daughter’s health care

Photo by Todd Wiseman

I am very concerned about how both the U.S. House and U.S. Senate proposals to replace the Affordable Care Act will affect Americans. One in every five Americans (69 million) depend on Medicaid services, including the poor and people with disabilities, like my eight-year-old daughter, who was born with Down syndrome. She most certainly will need to depend on Medicaid services for her future medical care, supportive employment services and any other supports and services as she builds and maintains a high-quality, independent life.

Medicaid is already so grossly underfunded in Texas that the waitlist to obtain services for someone like my daughter is over a decade (~14 years). Those who finally do qualify often find there is not enough funding to provide the types or quality of services needed to allow them a basic level of dignity, and the opportunity to contribute to society to their full capability. In effect, there are millions of Americans who cannot reach their American dream, who cannot give back to the country and communities they love through work and taxes, simply because we underfund the vital services they need. Unless they are extremely wealthy, their lives become “throwaways.”

In addition to Down syndrome, my daughter has mild to moderate hearing loss, significant binocular vision dysfunction and severe arthritis that we just discovered is due to Lyme disease. She works hard every week. School is more challenging and tiring for her due to her cognitive difficulties, vision issues, hearing challenges, speech delays and physical challenges.

Yet when school is over, her work is not. She spends over 20 hours a week with private tutors, physical, occupational and speech therapists, and in vision therapy. She is often so exhausted by the end of the day that I literally need to carry her up to bed. She is doing all she can to be the most productive and independent version of herself. If Congress decides to reduce Social Security retirement benefits, my wife and I will make plans and save accordingly. We can have a “plan B”. Our daughter, however, has no such backup: Eliminating benefits or shifting benefit costs onto the states so that they can eliminate them will only serve to deteriorate her quality of life. She has no recourse. She has no power. She has only us and our elected officials — if they choose to lift her torch and speak for her.

As I am sure everyone is aware, Texas’s Medicaid program is one of the worst in the nation. My daughter was able to qualify for Medicaid under the deaf and blind waiver, but she was quickly disqualified because our family makes too much money. It was shocking to us. We do not make enough money to pay for her therapies — many of which our insurance will not cover. My wife had to quit her job to help transport our daughter to the 20 hours of weekly post-school services and the eight doctors that she sees on a regular basis. We are now a single-income family. We easily are spending $30,000 to $50,000 on these services each year — with the grace of a quickly dwindling savings account. By the way, this is not atypical for families with children with disabilities. Make no mistake, we pay our share!

What is our daughter’s recourse? She will not be pounding the pavement outside our senators’ offices; the truth is that she can barely walk at all with her arthritis. She will not be holding up signs and talking to the media; with her speech impediment, most would not understand her. She does not have millions of dollars to lobby. But in spite of this, she deserves thoughtfulness. She deserves a crack at her American dream.

Further stripping away access to Medicaid will have a profound negative impact on my daughter’s life.

I hope Sens. John Cornyn and Ted Cruz will carefully consider my daughter’s situation and ensure the healthcare law is written to maintain Medicaid services for her and others like her, without cuts, block grants or caps. The current proposal in the U.S. Senate would lay a devastating blow to Medicaid and people like my daughter. Her future and dignity are at the mercy and thoughtfulness of our elected officials.

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