This isn’t just devastating for disabled people. It’s extremely difficult for their families, too.
I’m JJ’s primary caretaker. I’ve struggled for years with chronic back and hip pain, and I have no access to affordable health care. Now that JJ’s a young man, I don’t know how I’m going to keep lifting him throughout the day — from the wheelchair to the commode, the shower, his bed, and back again — day after day.
I’m worried sick about my ability to keep providing the level of physical care JJ requires.
My husband is self-employed and insured through the Veterans Administration, which doesn’t cover the rest of our family. I’m stuck in the Medicaid coverage gap, since Florida is one of the 12 remaining GOP-controlled states that continue to refuse to expand Medicaid under the Affordable Care Act. My income is just a fraction above the eligibility threshold, but nowhere near enough to be able to afford a plan through the marketplace.
I’m worried about what the future holds for my remarkable son. President Biden’s Build Back Better plan would have closed the Medicaid coverage gap and bolstered funds for home and community-based services to help families like mine — and perhaps yours, too.
But every single Senate Republican, plus Democrat Joe Manchin, opposed it. There’s still a faint hope that something could pass, but it’s going to take a lot of pressure.
JJ deserves a fair shot, just like all kids do. At some point in our lives, most of us will need some kind of long-term care to stay independent in our own homes. And we all need basic, affordable, quality health care.
We’re all in this together. The sooner we understand this, the sooner we can demand that our lawmakers stop getting in the way.