Medicaid has enabled me to keep Don employed, and he has given me more than a helping hand and increased mobility. He gives me independence and hope. Before I had a caregiver, most of my summers were spent taking my wheelchair around the same neighborhood path, and that would be my only outing for the day. With Don, I go grocery shopping, find fulfillment in work, spend more time with friends, and truly experience what life has to offer — in large part, thanks to Medicaid.
Medicaid gives me the freedom to live my life. It’s far more than insurance. It gives me the ability to interact with the world around me, to find purpose in work, and to thrive in my community. Without Medicaid, my independence will be uncertain. I may not be able to go to appointments, get out of bed, or put a shirt on in the morning. I already budget meticulously because I can only physically work so many hours, and I can’t afford to work any fewer hours.
I need my job to pay for my housing, groceries and bills. It’s because I have a caregiver funded by Medicaid that I can work at a job I love. I can spend time with loved ones and fully embrace each day because he can transport me to where I need to go. Without Don, I would be trapped inside an apartment I can no longer afford.
The new law passed by Congress cuts Medicaid, Medicare, and Affordable Care Act (ACA) funding by $1 trillion and imposes harmful, burdensome paperwork requirements. The neuromuscular disease community is currently terrified of how this will shatter the lives that we’ve built for ourselves. The most crucial part of my care is having my caregiver, and these cuts threaten the optional Medicaid Waiver that pays his wages. With these cuts enacted, states soon face immense pressure to reduce these “optional” services.
The law also increases the frequency with which recipients need to prove their eligibility for Medicaid coverage, including that they meet the work requirement. While taking time from work, refiling paperwork, spending hours on the phone, and getting transport to a local office may not seem like a burden to some, transportation can be stressful and sometimes impossible for people with neuromuscular conditions.
These Medicaid cuts will have severe impacts on the millions of people like me who rely on this program to be productive. The government encourages everyone to contribute to society and to experience the full freedom of the American Dream that our country has been built upon. If we cannot get to our jobs, our friends, or our lives because we can’t afford to leave the house, what independence is left for us? Medicaid is the sole protector of my American freedom.
Cutting Medicaid won’t stop us from needing assistance; it will just stop us from thriving. Medicaid funding cuts impact everyone, whether you have a disability or not, and I believe everyone should be able to thrive in this country.
This is why now is not the time for despair or helplessness. Congress may have made these cuts law, but we can still work together to blunt their impact. We must continue to raise our voices because decisionmakers in Washington can still mitigate these harms.
Also, state lawmakers, including mine in Ohio, must hear from our community on why Medicaid services are critical as key decisions will be made at the state level in the near future.
Most people with chronic conditions remember the day that their life began when coverage started providing these services. I fear that even more will remember the day that it’s all taken away. But that does not need to be our reality if we stick together, stay in the fight, and continue to advocate for our care.
Bryce Madsen is a Miamisburg resident who lives with Spinal Muscular Atrophy.
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