The Gap Between the Principle and the Practice

I agree with the disability rights movement. I believe people with disabilities should live in the community, not in institutions. I’ve read the toolkits. I’ve read the articles. I’ve read Cassandra Brandt’s piece on Rooted in Rights about the nightmare of institutionalization, about trying to make 40 hours of Medicaid care work at home and watching her family burn out.

I watched my mom burn out at 29.

For 34 years, my mother was my caregiver. She was the community-based care that advocates talk about. She cooked my meals, found my clothes, managed my medications, handled doctor appointments, kept the house organized, did the cleaning and laundry, and took care of me when I was too sick to be up and moving, which was a lot of the time. She was on call 24 hours a day, 7 days a week. Medicaid paid her for 29 of those hours. The other 139 hours each week, she worked for free.

She was exhausted. Her body was breaking down. Our relationship was suffering. And when it became clear that this wasn’t sustainable, when she couldn’t keep doing this anymore, we looked for alternatives.

Here’s what Texas offered.

The Home and Community-Based Services waiver has four residential settings. If I want to live in my own home, I can receive up to 5 hours of care per day. Five hours. That’s one hour more than what was already breaking my mom. The other 19 hours of each day, I would be on my own. I’m blind, autistic, and chronically ill. I can’t be alone for 19 hours a day.

If I need 24-hour care, my only options are congregate settings. Group homes with awake staff. Settings where I live with other disabled people, where the schedule belongs to the facility, not to me.

The Autistic Self Advocacy Network calls group homes institutions. The Olmstead decision says states must provide care in the “most integrated setting appropriate to the individual’s needs.” I agree with both of these things. And I also need 24-hour care to survive.

Consumer Directed Services would let me hire my own attendants instead of using an agency. I would control who helps me, when, and how. But it doesn’t change the number of hours. I’d still be trying to patch together 24/7 coverage from a handful of part-time attendants at poverty wages, and I’d be managing all of it myself on top of being disabled.

This is the gap.

It’s the space between what disability rights demands and what Texas funds. It’s the space between “people with disabilities should live in the community” and “here’s 5 hours a day, figure out the rest.” It’s the space between the principle and the practice, and I’m sitting in it right now, in a nursing home, because there was nowhere else to go.

My mom didn’t fail me. The system failed both of us. She was doing the work of three full-time aides on less than a part-time salary, and when her body gave out, the only thing the state had to offer was an institution. Not more hours. Not a self-directed budget. Not an apartment with attendants who come to me. A nursing home.

I’m 34 years old. I’m the youngest person in this facility by decades. I’m also a disability rights advocate. I write about inclusion and autonomy and the right of disabled people to live in the community. I believe all of it.

But I also need 24-hour care, and in Texas, the only way to get it is to live somewhere that advocates call an institution. I can’t make those two things fit together, and I don’t think I should have to.

The disability rights movement says “if not an institution, then what?” I’m asking the same question. I just need an answer that includes enough hours.