The COVID-19 Pandemic Put My Life in the Community at Risk & How I’m Fighting for My Rights.

It all started on January 10^th, 2020, when I went to Bellevue Hospital. I had fainted in my apartment in Manhattan. While I was at Bellevue, the doctors checked me out and they found out the reason I had fainted. They said it was because I had a pinched nerve in my spine. I stayed in Bellevue for almost a month while they tried to schedule me for a spinal surgery. 

Then they said they wanted to put me somewhere where I could be comfortable while they worked on getting me a date for my surgery. I wanted to go to a rehabilitation facility in Manhattan where I had been before that was near my home, but they didn’t have any openings there. I told Bellevue that I would like to go to a different facility in Manhattan. Instead, my older sister told the Bellevue workers that she wanted me to be discharged to a facility closer to her home in The Bronx. That’s what they did. Even though I said I didn’t want to go there, the workers at Bellevue said they were going to send me to be close to my sister anyway. This made me feel angry and disrespected – how could my sister know where I should be rehabilitated more than me? 

So, they transferred me to East Haven Nursing Home. After I ended up there, everything that could go wrong did go wrong. Bellevue finally scheduled my pre-operation appointment with my surgeon for March 17^th, 2020. East Haven had scheduled an ambulette to take me to Bellevue for that appointment. But COVID-19 was spreading quickly through New York City. That threw everything off for me, greatly delaying my operation. On the morning of March 17^th, I asked the East Haven staff when the ambulette would arrive. The staff said that the hospital was closed because of COVID-19. 

Months later, I found out that this was a lie. In fact, Bellevue later told me that they had been expecting me and marked me as a “no show” when they didn’t hear from East Haven. East Haven decided to cancel my appointment without telling me. Later, they told me that they could not have gotten me to Bellevue because of a directive from the New York State Department of Health. But the directive they were referring to came out on March 18^th, the day after my appointment. And the directive only put restrictions on visitors that hospitals had to put in place because of COVID-19. It did not say that medically necessary appointments like mine were to be canceled. 

I asked the East Haven staff again and again to reschedule my appointment. But they delayed and delayed. When I pressured them more, they made appointments, but repeatedly made appointments with the wrong clinic at Bellevue. Twice I traveled hours to Bellevue only to be told once I got there that the East Haven staff had made a mistake and I had to go back. 

The surgery that I was waiting for was no small thing: it was spinal surgery! Every day that I waited at East Haven, I became more disabled. I used to be able to get out of bed by myself. I used to be able to get dressed by myself. I used to be able to go to the bathroom by myself. But since I went to East Haven, I lost all of that. Even though it was the pandemic, there was no reason to stop me from getting the medical care I needed and that Bellevue was ready to provide.

Part of the reason I lost so much functioning at East Haven was because of their delay. But part of it was that being in a nursing home during the pandemic was terrible. While I was waiting for my surgery, I did not regularly get the physical therapy services I needed to keep my functioning. Especially in the first few months, I didn’t get regular help with toileting or keeping myself clean. I went days at a time without showering, lying in my own filth. I also got COVID in June of 2020 and lost a lot of weight. And there were smaller things, too, that made it worse. For example, after dinner, they used to bring snacks around to the residents. But they would often skip over me because I needed to be fed. Some of the nurses didn’t want to feed me my snack. At least twice I made written complaints to the New York State Department of Health about the quality of care that I and other residents were getting, but I never got a visit, call, or email back. 

By September 2020, a friend had helped me to figure out how to correct the mistakes that East Haven kept making when they tried to reschedule my appointment. When my friends stepped in and advocated for what I needed, people finally started listening to me, and what I wanted. It wasn’t the staff at East Haven that finally got me to Bellevue, but my friends in the community. But by then I had to start all over again. Since we waited so long, they had to do another MRI. When my doctor looked at it again, he said we had to do a more invasive surgery because my spine had gotten much worse than when I first got started nine months earlier. The surgery was riskier and had lower likelihood for me to get my functioning back. 

I’m not happy about all this. Now I feel like I can’t do anything for myself anymore. I’m trying my best to start over but as I get older it’s harder for me to do that. Instead of receiving expedited care, I was routinely ignored, and my needs treated as “extra”. This has directly resulted in my loss of functioning, and no one should have to go through that. 

I want to get my strength back but since I got home in July 2021, it has been a struggle to keep my Medicaid services that help me stay in my own place and not wind up in a group home. They don’t make it easy. I’m supposed to have all these people coordinating and helping me to get the things I need, like a wheelchair that works, occupational therapy, and physical therapy, but it’s really a struggle. I’ve been home a year and I haven’t gotten a wheelchair that works properly yet, and I haven’t gotten one day of occupational or physical therapy. It shouldn’t be this hard.

I’m a person that doesn’t want to give up. I won’t tell you all that I’ve been through and all that I’m going through. I still want to be independent as much as I can. I want people to know it’s not easy. When you have a pinched nerve, make sure you get that taken care of right away because you don’t know what it can do. It can mess up your whole life. 

And if you’re providing care to someone with a pinched nerve, get them in for care quickly because the longer it is untreated the worse it gets. The system set up for people with disabilities is complicated and slow, this causes people with disabilities to be extra prepared to take care of our own needs.

For more on Tony’s story, read his article in Harvard Law Today, June 7 2021, or watch his presentation at the Covid-19 and Disability Panel, March 9 2021.