We’ll All Need Home Care Someday

My son JJ has cerebral palsy. He’s unable to speak or use his arms and legs.

But he’s remarkable. He communicates by using his nose to type on a keyboard attached to his wheelchair. His mind is sharp, and he’s passionate about advocating for people with disabilities and their families.

He’s learned so much about policies that can help disabled people like him live independently at home. But heartbreakingly, he’s also had to learn about the political forces that seem dead set against helping anyone.

We live in Florida. We’ve been on the waiting list for in-home health care assistance since JJ was 3 years old. He’s now 18.

But even though JJ struggles to perform the most basic tasks of self-care, we only qualify for the lowest level of urgency on Florida’s iBudget wait list. All that’s been provided so far is one ride to a doctor’s appointment — after three requested rides fell through. He’ll be ineligible for even this paltry help when he turns 21.

Florida has repeatedly taken steps to put care out of reach for residents who need it.

For example, the Florida Agency for Persons with Disabilities (APD) eligibility rules make it difficult for someone like JJ to move up in the over 22,000-person waiting list. They essentially require that a caregiver must have a terminal illness or something comparable before in-home care is provided.

Our Medicaid waiver program for disabled people is vastly underfunded. Despite having one of the country’s largest qualifying populations, Florida’s funding for these services — which could keep our family members out of nursing homes and other institutions — is among the lowest in the country, ranking 43rd.

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.