A Woman’s Unusual Journey to Leave a Hospital

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

ALEXIS RATCLIFF: Nursing is not just a state crisis, it’s a national crisis, because they’re so underpaid, and I think that’s one of the issues.

WELLS: Today, Alexis Ratcliff, and her attorney, Lisa Nesbitt, on Alexis’ quest to live independently and go to law school.

RATCLIFF: Our Supreme Court, and Justices like our Supreme Court should do a little bit more to help disabilities.

WELLS: That’s all coming up on Disability Rap, stay tuned.

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WELLS: Welcome to Disability Rap. I’m Lindsey Wells.

Hospitals don’t generally sue patients for trespassing, but that is what happened to Alexis Ratcliff. Alexis is 18 years old and has lived in a hospital in Winston-Salem, North Carolina since she was 13. Last year, the hospital sued Alexis for trespassing to try and force her to move out. Alexis wants to leave the hospital, too, just not where the hospital wanted her to go. Alexis wants to live in her own home with support from caregivers. She wants to live close to family and friends. The hospital, Atrium Health Wake Forest Baptist, wanted to transfer Alexis to a nursing home in another state. Alexis, who won a full academic scholarship to a nearby college and started classes there this fall, is saying no.

For more on all of this, my co-host Carl Sigmond and I spoke with Alexis Ratcliff. Alexis is a quadriplegic who uses a wheelchair to get around and a ventilator to help her breathe. She acquired her disability as a result of a car accident when she was 18 months old.

We were also joined by Lisa Nesbitt. Lisa is a Supervising Attorney at Disability Rights North Carolina, and she’s part of the team working on Alexis’s case. The day before we recorded our interview last month, the hospital unexpectedly dropped their trespassing case against Alexis. We’ll hear more about that in a bit. And just to note that Alexis and Lisa spoke to us on Zoom from Alexis’ hospital room, so the audio isn’t great. Listen carefully! Here’s Carl to begin the interview.

CARL SIGMOND, HOST: Alexis and Lisa, welcome to Disability Rap. It's so great to have you with us, and congratulations on the hospital dropping the case against you. Here on Disability Rap, we often ask people to begin by telling us a little bit about themselves and their disability. So can you do that to start us off?

RATCLIFF: My name is Alexis Ratcliff, I am 18 years old. I am a trach and vent quad. I am paralyzed from the neck down. I am a C2, which means the higher the accident, the more paralyzed you are. I have a ventilator which helps me breathe. I've been paralyzed since I was 2 1/2, so a little over 15 years now.

SIGMOND: Can you tell us a bit about what your childhood was like? I understand you went to school before you moved into the hospital.

RATCLIFF: I went to school from second grade to the middle of my eighth grade year. I was home-schooled before that, just due to health issues. I went to school from second grade to eighth grade year. School has always been very important to me. My parents didn't really do school, so it's true that I wanted to make a difference. I wanted to make a change. I wanted to be better than them just because of all their issues and stuff like that. My grandpa took me in when I was two and a half. I went with him until I was 13. I did school from elementary to my middle school year. I did all four and I figured a lot.

SIGMOND: And what was that like - going to school? You were using a wheelchair. Can you talk a bit more about your experiences in school?

RATCLIFF: I enjoyed going to school. It got me out of the house. It got me to do things. I was hanging around my friends a lot, went to dances, stuff like that. It's nice to have somewhat, I wouldn't say a normal life, but I guess you could say normal life because I still ride the bus, the normal bus, except for the thing that there was a regular lift on it. It was great. I loved it. Actually, I need somebody to help [garbled]. But I liked my friends, and feel like I had some normalcy, I guess.

SIGMOND: Normalcy is so important. And at the same time, what is "normal" anyway?

RATCLIFF: Yes, I agree. But I think the reason why I say ‘normal’ is because going to school Monday through Friday, doing things that I didn't really look out like, "Oh, she has a disability." People just love me for me which was why I felt I fit in [garbled]. Just because you have a disability doesn't mean you're not human as well. That was nice to have that experience.

SIGMOND: Definitely. And then you got to high school, and talk about that experience a bit.

RATCLIFF: I loved high school but I missed out on a lot because I was in the hospital. I can’t always get to dances, and I couldn’t always get a chorus concert, or different things. My 10th-grade year was when COVID hit. So things really got hard. Even though I was already online a year and a half prior to that, there was no teachers at the hospital. It was all on me, and it was truly fighting for my education. It was like, I need help, I need assistance. Thank God I have good teachers and stuff like that.

My high school experience was good. I think I cared about school more than I did when I was in middle school and being home schooled. I think when I was young. I was like, "Oh, I want to hang out with my friends. I don't really care about English and math as long as I hang out with my friends. When I was in high school and I was online, that's when I really started caring about my education and my whole life. When you get to high school, that's when you really start caring because colleges are going to start looking at your resume and looking at your background and look at everything. I know that I wanted the [garbled] college and stuff like that.

I got National Honor Society, National Technical Society. I got a 3.8 GPA. I got cum laude. I got a scholarship for over $1,500, I think.

SIGMOND: Very impressive. And there are so many questions I have. I didn't even think about what it was like to be there during Covid. Yikes!

RATCLIFF: Yikes is right. It was awful during COVID. The visitors were restricted. It was just a closed-off situation. I don't like that. I don't like being closed off. I like being able to be out and free and wild. Unfortunately, that was not an option during COVID. I had to protect myself. I also have older family members, so I knew that I had to be careful because I didn't want to get it, and I didn't want my family or friends to get it. It's just been very stressful.

WELLS: Alexis, why do you want to leave the hospital and live on your own, your family and friends, instead of going to a nursing home?

RATCLIFF: That's never been what I wanted. I've always been wanting to be around my family and my friends. I don't like the word no. I know that's bad to say, but I like doing things. I like being out. When I was in school, I was go, go, go, go. I was never stopping. There would be days after school and then I would go. We would either go to a movie or go to a restaurant or anything like that. So I always, I love being out. I love people. The reason I want to leave is because I am very closed off. I've not been outside.

I went outside in November, December. Before that, I was out to the 2nd of August, actually. I don't like that. I like the sun and the breeze. I am one of those psychopaths that even when it's 30 degrees outside, as long as it's sunny, I don't mind being in there. I don't mind wearing long sleeves. I like being out, and in a facility you don’t get to do that as much. I also want to break the stereotypical. When people see disabilities, they automatically assume all facilities. I want to break the social norms I guess you could say.

WELLS: Lisa, can I bring you in here for a moment?

LISA NESBITT: Sure.

WELLS: Why is it important for people with disabilities to have the right to live on their own in their communities and in their homes with supports and services to help them do so?

NESBITT: I think two things. One is nobody wants to go live in a nursing home or any other facility if they can live independently in the community. It's important because people with disabilities are us. They're the same. We're all the same. We all want the same things. We all want a family that loves us. We all want choice. We all want to be and do things in the community. We all want social contacts.

People with disabilities are our mothers and our fathers. They're our kids. They're our sisters and our brothers. They're us. Honestly, as we age, we're all going to be people with disabilities. It's important that we all have that opportunity to be in the community and not be stuck in an institution somewhere. I'll leave it at that.

RATCLIFF: Yeah, I agree.

SIGMOND: Great, and the US Supreme Court agreed in - what was it - 1999, with Olmstead. Can you talk a bit more about that decision, Lisa, and how it relates directly here?

NESBITT: The idea behind Olmstead was that if people want to live in the community, and they can live in the community with supports and services, they shouldn't be stuck in an institution and be relegated to that for a lifetime. The Supreme Court said, "No, they get to live in the community." It was a realization, again, that people with disabilities are just like us. The people with none. I say us, I'm talking about me because I don't have any known disabilities. People with disabilities and people without disabilities are all the same. That's all.

I think the Supreme Court ruling in Olmstead really recognized that why are we treating them differently? We shouldn't be doing that. We know that a lot of them want to live in the community, and they can live in the community with supports and services. It may be less expensive. It's certainly going to make them happier. It's going to be a better outcome all the way around.

RATCLIFF: I just think that our Supreme Court, and justices like our Supreme Court should do a little bit more to help disabilities because I feel there's so many resources that need to be more pushed because unfortunately, there's still a lot of, for some reason, people are still trying to put people with disabilities in facilities. I still think that it shouldn't be the case even though it is.

SIGMOND: Great, and Alexis, what are some of those things on a policy level that you are calling for, both for you in your situation and for other people with disabilities? What are you calling for?

RATCLIFF: Nursing is not just a state crisis, it's a national crisis. Because they're so underpaid, and I think that's one of the issues, and also, in North Carolina especially. We only have two facilities, that takes trachs and vents and that's six in the beds, and the only specialized ones have the trachs, so that means people are having to live in the hospital.

Or it's hard for parents or family members or attendants to take care of complex or just disabilities in general because they don't have resources. They don't have the assistance. They don't have the nursing. There needs to be more nursing and there needs to be more resources for family and friends and help and stuff like that. I think even if there is facilities, I think that they should be trained better and assisted better, and a facility should be more like a home than a nursing home or an institution.

NESBITT: Right, and I think what we'd like to see is that you have a choice beyond you can stay in the hospital or you can go live in an institution somewhere else, right? Right now, that is the way North Carolina looks at people with vents.

SIGMOND: And I just want to be clear for our audience that the reason the hospital was asking - or even trying to force - you to move out of state was because no nursing home in the state would accept you, which I find ridiculous.

RATCLIFF: Yes, so I can touch on that a little bit. My trach is not like a typical adult trach because of the way my lungs are, the way my body is, the way my body structure is. Basically, the facilities is only trained on one type of trach, and that trach doesn't work for me. And the facility that's out of state did work, but the problem is insurance. If I did move to that other place, I wouldn't be at North Carolina, I wouldn't have Medicaid in North Carolina anymore. I have my whole team in North Carolina and I just didn't want to do that. And I wouldn't be able to come back to Baptist, even though I don't want to come back to Baptist. Baptist staff knows my needs, and if I get sick, I'll want to be able to come back to a hospital I know, but I want to go to a hospital that somebody knows me, and unfortunately, nobody in Virginia knows me. I'd rather a hospital that knows me to make decisions than a hospital that doesn't know me to make decisions.

WELLS: I have a question for Lisa. Why did the Disability Rights North Carolina feel the importance to take on Alexis's case, and what are the broader implications in North Carolina?

NESBITT: We got involved, we heard about the case, and we got involved because there literally is nobody else to put all the pieces together except for our organization that we know of. There's a lot of social agencies and social workers that have touched Alexis's life, and worked with her, and want good things for her. They all have their lane, right? They're all staying in their lane and doing the best that they can, but there's nobody trying. It's a very fragmented system, the Medicaid system. There's nobody who's trying to pull all the pieces together to get it all figured out.

How do we get Alexis into the community with supports and services in a life that she wants for herself? We knew that, and when she got sued, we also knew that there was really nobody to defend her. We jumped in and defended her. We were already involved with her in trying to figure out how do we get her out of the hospital to where she wants to be, and when she got sued, we said, you know what? We're going to defend her in this lawsuit.

The policy implications are that in North Carolina, when you have somebody with a vent, the knee-jerk response is, well, they don't fit in one of the very few beds that we have, which are institutional. Just ship them off out of state, and that should not be what North Carolina is doing with ventilator patients, right? A lot of the individuals, they want to go back to family, they want to go back to friends, they want to be back in their community, and so that should be an option for them. In North Carolina, we're not even considering that as an option most of the time.

SIGMOND: Could I just jump in here and ask: why? What is the reason the state gives for this policy?

NESBITT: Honestly, I don't think the state has given a reason for their policy, and the truth of the matter is as the Protection and Advocacy Agency, we at Disability Rights did not realize that this was happening until we got involved with Alexis, and now realize what a big issue this is.

WELLS: Alexis, you're a great advocate. I have to tell you, I'm also the Disability Community Advocate for FREED, and I want you on our team. If you could speak to the fact, what do you want to do? Do you want to be a lawyer and advocate for yourself and others?

RATCLIFF: Yes, I am actually probably going to law school as soon as I graduate. Actually, no, I'm going to take a break from school because I need a break, and then after I take my break, I'll go to law school.

WELLS: I just wanted to tell you, Alexis, congratulations on getting a scholarship to the Salem College.

RATCLIFF: That's a great school.

WELLS: It's a great school?

RATCLIFF: Yes, it is.

WELLS: Oh, that's great. What do you enjoy about it so far?

RATCLIFF: It's smaller. It's an all-girls school, first off. Second off, it's a lot smaller than a big old school, so I think that's a lot better. There's a lot more teacher and student interactions than you would at a bigger university.

WELLS: I'd want you on my team for sure if I ever needed advocacy like what you're going through now.

RATCLIFF: Thank you.

SIGMOND: Alexis, what is one thing you wish the world could know about your situation and what you're going through?

RATCLIFF: I think when people hear trach and vent quad, I think they think complex, and there's not resources that can help. That's not true. There's a lot of resources. You just have to find out and, I don't know, I think that there's a lot of people think that disability is hard and it's not hard if you get the right people and once you get the right people, I think it takes a lot of stress, and a lot of anxiety.

SIGMOND: Great, and Lisa, as we wrap up, anything you want to add that we didn't cover?

NESBITT: I don't think so. I just want to say, for our organization, it has been a joy for us to meet Alexis and know her and be able to help her, and really an honor for us. I mean that wholeheartedly. She's so smart and she is such a firecracker.

RATCLIFF: Thank you.

NESBITT: I know she's going to go on and do great things if she just has the opportunity, and we want her to have that opportunity.

SIGMOND: Well, I think we agree, as well. I want to thank you both for coming on.

RATCLIFF: Thank you for having us.

WELLS: That was Alexis Ratcliff, a college student at Salem College in Winston-Salem, North Carolina. Again, the day before we interviewed Alexis last month, Atrium Health Wake Forest Baptist dropped their trespassing charges against her. We also heard from Lisa Nesbitt, a Supervising Attorney at Disability Rights North Carolina. And as we said at the beginning of the show, we interviewed Alexis and Lisa from Alexis’ hospital room, so the audio isn’t great. You can read the full transcript of our interview on our website, disabilityrap.org.

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap Podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap.