Dear Ted Cruz & John Cornyn — Tell me why

Dear Senators,

I’m a gainfully employed, tax paying, property owning, Texan with Spinal Muscular Atrophy, a very severe, progressive, rare, and genetic neuromuscular disability. I use a power wheelchair and require help from an in-home healthcare provider day and night to get in and out of bed, showered, dressed, prepare meals, and perform other activities of daily living that I do not have the strength to do. At night, because my lungs have gotten so weak, I use a ventilator to help me breathe. Despite my physical disability, I hold two master’s degrees and a teacher’s certification. I taught Texas children for seven years full-time until my disease progressed to a point when I had to leave teaching and find other full-time work. Now, I work for Austin Community College and advise students, helping them to become educated and skilled members of Texas’s workforce. When I’m not working, I devote over twenty hours per week to helping other adults with neuromuscular disabilities like mine through a non-profit organization that I am privileged to lead, NMD United.

Accessible Photo Description: Emily Wolinsky sits in her office sitting at her desk in her power wheelchair wearing a blue sweater. She holds a coffee cup and her computer sits off to the side. She smiles for the camera.

I make just over $45,000 per year and my attendant care, which barely meets my most basic needs at six hours per day, costs approximately $30,000 per year. I contribute out-of-pocket over $3000 per year for medical expenses. This contribution is outside of my employer-sponsored health insurance and the Medicaid waiver that I’ll describe below. My state health insurance through my employer, as you’re aware, does not cover long-term care. Long-term home and community-based supports for 99% of Americans is only covered by Medicaid.

The Texas Department of Health and Human Services has provided me with a Medicaid waiver from a block grant to cover the cost of my care since 2006, so I can live my life and continue to contribute to society in all the ways that I can. That block grant funded waiver (CMPAS), while it has saved my life, also comes with many limitations. Ask any physician and he’ll tell you that I require 12–16 hours of care each day, but this waiver only covers half of that amount because block grants do not adjust to the growing needs of a population. Block grants are fixed amounts. This is why they are dangerous. Most of your fans have no idea what the policies you’re advocating for really translate to. You and I both know that people like me will die when Medicaid is gutted, but only one of us seems to be upset by that fact right now. And I’m learning that most likely only one of us has actually read through the entirety of the BCRA legislation. Let me tell you, for me, it was like reading my future autopsy report.

Please tell me and my friends with disabilities, who are all relying on these same home and community-based supports funded by Medicaid, why you are cheering-on drastic reductions to Medicaid right now. Please tell me why it appears that you hate people living with disabilities and debilitating illnesses this much. You wouldn’t be advocating for Medicaid decimation if you didn’t despise us.

If the Medicaid funds that pay for home and community-based supports are cut or reduced from the current bare minimum in any way, I will have to quit my job, sell my home, spend my meager savings, and I’ll have no other option but to get my needs met in a nursing facility at 40 years of age.

Accessible Photo Description: Emily and her father, Jim Wolinsky, pose together while at a Round Rock Express baseball game. The audience and baseball field are in the background.

Medicaid allows me to keep working, keep paying taxes, and keep helping my fellow young Texans thrive. I’ve worked so hard throughout my life to just live a normal, humble, life and frankly, I’m sick with worry because of you right now. If I end up dying in an institution because of this legislation it will be because of you both, Governor Abbott, and the GOP commitment to saving the rich from paying a few dollars more in taxes. It saddens me that our legislators’ hearts have been replaced with cash registers. Greed destroys and that is all that this country seems to be about these days.

We as humans could be so much better than this. We could easily be a country that feeds the hungry, clothes the poor, and provides quality healthcare to all of its citizens no matter how much they earn or do not earn.

Please do the right thing and fight for all of us. It’s your job and our lives are in your hands.

If you are going to send me a form letter response, please do not bother. I already know what you’ll reply. If you truly care, you’ll schedule an appointment to meet with me and some of my friends in person to address our fears and concerns as your constituents.

Sincerely,

Emily Wolinsky, Resident of Austin, Texas for 18 years