The COVID-19 pandemic has made life more difficult for people all over the world — and even more so, for people who already face challenges in their daily lives.
On April 8, Kentucky Protection and Advocacy — one of 57 similar organizations that provide advocacy and legal support to people with disabilities in every state — called on Kentucky leaders to protect people with disabilities during this pandemic.
Kentucky Protection and Advocacy Director Jeff Edwards and officials at numerous agencies that help people with disabilities sent an open letter to Gov. Andy Beshear, praising him for the state’s pandemic response and asking him to ensure people with disabilities are not discriminated when they seek care for COVID-19.
Referring to the lack of medical equipment and supplies some states face, Edwards explained that in response to COVID-19, some states have adopted healthcare policies that treat people with severe or profound intellectual disabilities as “unlikely candidates for ventilator support.” But, they say, Kentucky does not currently provide any guidance on the matter.
“In the absence of a state policy, individual hospitals and hospital systems are left to establish their own policies and protocols,” he wrote.
That is one of the biggest fears for Johnson County resident Natasha Miller, whose 14-year-old son Isaac Barnett has Nager Syndrome, a rare condition that affects the development of a person’s face, hands and arms.
Miller said when she was pregnant with him and the ultrasound showed one of his arms was shorter than the other, healthcare workers repeatedly suggested she have an abortion. She was seven months pregnant.
“I could feel him kick. I could feel him move. That wasn’t a decision I could make,” she said. “I explained that if he lived five minutes, he lived five minutes. I could not make that decision. And the doctor looked at me and pretty much told me, ‘Fine. You can hold him until he dies.’”
She got a second opinion from the Cincinnati Children’s Hospital.
Isaac did not die. Other than the limitations and challenges he faces because of Nager Syndrome, he’s a typical 14-year-old boy.
“He’s a little goofball. He has the best personality ever, and I’m not just saying that because he’s mine. He really does. And he can’t stand his sister,” Miller said, chuckling, talking about how he picks on his sister and rolls his eyes at her friends because “they’re girls.”
The syndrome does not affect Isaac’s intellect. He can think and reason like other kids. He loves video games and he adores music and children.
Isaac has undergone 43 surgeries, including surgery to fuse bones in his neck and five surgeries on his jaw, which is smaller than a typical jaw and causes his tongue to block his airway. He has lived with a trach — an opening in his neck through which he breathes — his entire life. He also has a feeding tube, moderate hearing loss and a medi-port so he can get the IVs he needs when he needs them.
Miller said she has to be extra careful about exposing Isaac to viruses,
“When they (the school) shut down, it was scary, and when I started hearing of how this affected New York, immediately, it wasn’t, ‘I need to protect my family,’” she said. “As selfish and terrible as this sounds, and I feel bad for even saying it, it was, ‘I need to protect Isaac.’ Because it’s a death sentence for him. He’s looked at as critical. How hard would they fight? Would they just give up?”
She talked about stories she’s seen where doctors and nurses in hard-hit places are having to choose the people they can help. It makes her worry that, if there is a shortage of supplies here, her son would be one of those who couldn’t get help.
“If we end up in the hospital, in my mind, I know that’s a good chance I’m going to say goodbye … But I can tell you from my experience with Isaac, if there’s anybody that would fight for their life it’s him because that’s all he knows to do,” she said.
Miller said if guidance is set about providing care to people with disabilities, then healthcare workers wouldn’t have the extra burden of having to “pick and choose” who gets a ventilator and who doesn’t, as it has been reported elsewhere.
“I would probably say that your general population of people with disabilities are the most resilient people that you will ever meet,” she said.
Kevin Fleming, a Kentucky P&A advocate who works from Johnson County, said Miller and other people like her are worried.
“When you talk to someone like Natasha …. There’s real anxiety and real concern for all these folks out here, these groups, these family members, these people with disabilities, about what they’re reading, what they’re seeing that’s happening in other states, and putting our healthcare workers in very difficult situation where they have to make a decision about who gets a ventilator and who does not,” he said.
He praised Beshear and his administration and said the request to protect disabled individuals comes because guidance needs to be issued before a critical moment arises in a Kentucky hospital where someone is forced to choose.
“They’re doing wonderful things. So, this is definitely not a negative spin on anything. It’s just we feel like it’s very important that these families and these people with disabilities know that there is thought being put into having this discussion and in giving guidance and we also want people with disabilities to be part of that discussion,” Fleming said.
Miller said she hopes Beshear can tell her that it will be okay for her son, too.
“I wish if there was something that he could tell me, I just wish he could tell me confidently look at me and tell me you’re going to be fine. You and your son have absolutely nothing to worry about if he was to come into contact with this. Just to know that we’re safe. I know we’re safe at home, but I need to know that we’re safe in a hospital as well,” she said.
She talked about things she’s learned about the response to this virus in other states from friends who have children with Nager syndrome. She said some of the children with this syndrome need more assistance than Isaac and they keep ventilators at their homes. Because of the shortage in medical equipment nationally, she said supply companies are retrieving those ventilators from those families.
“Some of those kids require more assistance than Isaac and some of them have ventilators on hand for when they’re sick, and the supply companies have had to come and get their ventilators. The parents are just told to bag them (with oxygen) until you get to the hospital,” she said.
She said these families are also facing problems getting the medical supplies they need to care for their children daily.
She praised workers at Paul B. Hall Regional Medical Center in Johnson County. Isaac goes to that emergency room once a month for upkeep of his medi-port. Miller also praised the community support she’s gotten from her family, friends and neighbors, as well as other healthcare workers who have helped her and Isaac during this time.
Protection and Advocacy legal Director Heidi Schissler said community members can help people like Miller by following guidelines issued by the government.
“That’s the reason why the stay safe at home and the social distancing and all the things that the governor has suggested and required by executive order is so important because the numbers change daily as to when we’re going to reach our peak and how bad the peak is going to be …. If we continue to be smart about it and not even, hopefully, get to the point where any doctor or hospital is having to come up and make a decision like that … it’s kids like Isaac that it’s going to matter to,” she said.
For more information about Kentucky Protection and Advocacy and the services it provides, visit, kypa.net.