The Senate version of the bill to repeal and replace the Affordable Care Act, like the House version before it, is a cruel piece of legislation. It is projected to force 22 million people off their insurance. It offers smaller subsidies for worse coverage. It hands a massive tax cut to wealthy people who already don’t pay enough in taxes.
It also aims to cut Medicaid by $772 billion over ten years, and introduces spending caps to limit coverage for those who aren’t kicked off the program outright. Of all the provisions contained in the bill, the changes to Medicaid are the most sweeping and catastrophic.
In 2015, 97 million people received health coverage through Medicaid. Nearly half of them were children. These are the people who will lose coverage, or see it weakened or capped, if the bill goes through as written. These are the stories behind those numbers.
I talked to Zahra, who has autism and was previously living in a group home, and her mother, Diana, about the Medicaid-funded self-directed services that allow Zahra to live in her own home. Their responses have been condensed and lightly edited.
Zahra, 27, New York
I never thought there’d be anything like this. My life has transformed immensely. I was in a group home with people who had no idea what to do with me or how to help me. I am not saying they were bad people, but a lot of them mistreated me. It was demeaning. Because of my issues with paranoia and a lot of my issues with anger, because I had no help with that, I was getting in fights with people in my group home.
Ever since I got out of there, I am able to make my own food. No one yells at me for needing help. I can go places that I never thought I’d be able to go. My dog lives with me. I have staff now who love me and take care of me. They help me. Without them I wouldn’t be able to go and hang out with anybody because I have anxiety on the train. I don’t understand social cues because I was born that way.
I draw anime. Since I was at least 4 years old I have always wanted to become some kind of animation entrepreneur. I want to make my own animation. The class I’m taking now—anything they teach me is great. It’s enjoyable. It’s fun to be with different people and learn different things. It’s going to help me make my anime.
The staff that I have, they are here for me. I don’t understand why anybody would want to take that away. It’s like me telling you—it’s like taking water away from Donald Trump. What would he feel if everything was taken away from him?
That’s common sense that people should be independent. Not everyone is meant to be in a group home, people are meant to be free. If they can get the help that they need they should be outside, not cooped up in a group home.
The group home felt like being in an isolation unit, isolated from the world. When you’re in a group home, your time is controlled. When you go out, when you come home.
I feel like ever since I’ve become less angry and less manic, I can go outside and be me and be happy. I can feel like I am part of the world and not alone and lonely.
Diana, 59, New York
My daughter has autism, Tourette’s syndrome, OCD, and bipolar disorder, which are all challenges. We have had to fight for a lot of things that she needs over the years, and one of the things she needed was a therapeutic education environment that was not available to us in the public schools. As a result, she had been in non-public schools since she was five years old.
When my daughter aged out of the residential school she was attending, at age 21, she was not yet able to go on to higher education. Then the choices were for her to either live at home or in a group home, but we were not, at the time, able to provide the kind of care she needed at home. So we chose a group home. It was horrible, and if I’d known I had any other options I would not have put her there. Unfortunately, at the time, I didn’t know about self-direction.
Self-directed services are a kind of Medicaid waiver program whereby they assess the individual and then they are given what’s called a Personal Resource Account—a PRA. They basically determine a budget and then you manage the budget. At the moment, my daughter has a full-time and part-time staff that helps her during the day, and those salaries and benefits come out of this budget. The whole idea is to allow individuals to remain in their community as opposed to being in a group home. I want my daughter to have a life that she can be proud of, a life that will give her not just joy but a sense of contributing—of being part of her community. The goal of the program is to be independent in the community. Without this program, I don’t know what we could do. I can’t afford to care for my daughter in the way that she needs to be cared for without this program.
She is an artist and wants to someday be an animated filmmaker. On Mondays, she takes an art class. She takes piano lessons so she can try to compose music for her animated videos. She exercises, she does art therapy, she visits with her psychiatrist, she goes on teaching excursions where she’s out at museums or doing community activities. We’re trying to get her prepared to matriculate into community college. She is beginning to have a life she wants.