COVID-19 Vaccines for People with Intellectual Disabilities: Who, When, Why, Why Not?

David’s birthday last year didn’t involve a needle or a pandemic!

My brother’s birthday was this past Saturday, and he got a needle in the arm to celebrate the occasion. My 58-year-old brother lives in an Intermediate Care Facility for people with intellectual disabilities. As part of phase two in the vaccine distribution, most of the staff and residents received the COVID-19 vaccine. When I received the papers to sign, permitting him to receive the vaccine, I had no hesitation.

My brother had COVID-19 this past fall despite his facility being on lockdown since March. It was the news I had dreaded and feared. I was worried he would not survive COVID-19 because David has a history of respiratory illnesses and has been hospitalized with pneumonia twice in previous years.

David never complains about pain. I’m not sure if this is because he has a high level of pain tolerance or because of his limited ability to communicate. I have seen him walking almost doubled over from back pain, and yet no complaints. I have seen him cringing with a terrible headache but not saying anything about it unless I specifically ask him if he has a headache. Therefore, my brother either had no COVID-19 symptoms or didn’t complain about any symptoms. Because a staff member tested positive, all the residents were tested for COVID-19. By the time the test results came back, and he was positive, it had been thirteen days, and he appeared to be healthy. Although I question the efficiency of taking thirteen days to get results back to a vulnerable population living in a congregate setting, I am grateful my brother didn’t have worse symptoms and seems to have recovered well.

Higher Risk of Death

Recent studies have shown that individuals with intellectual disabilities have a higher death rate if they get COVID-19. People with intellectual disabilities are three times more likely to die if they get COVID-19 than others. People with intellectual disabilities are more likely to have underlying health issues contributing to the high mortality rate.

For instance, people with Down Syndrome are more likely to have congenital heart defects. People with Down Syndrome also may have less muscle tone around the neck and have a larger tongue increasing the risk of choking and lung infections. People with intellectual disabilities are also more likely to live in congregate housing, another contributing factor.

As vaccines are distributed throughout the country, the question of allocating vaccines is natural. Who will get them first, and how will they be distributed? Because my brother lives in a nursing facility, he is in the second phase of vaccines. But the question of people with intellectual disabilities who do not live in congregate settings is still being debated.

Rationed Care

With our governor unwilling to issue a mask mandate even in light of Oklahoma having one of the highest rates of COVID-19 in the country, our health system is facing a stressful situation. Our hospitals are overwhelmed with people in the ICU with COVID-19. Our healthcare workers are emotionally and physically exhausted, and it’s becoming almost impossible to find an ICU bed in the state. The unbelievable thought of rationed care looms. The very idea of rationing care feels like a chapter out of a dystopian novel. It’s a discussion no one wants to have, but it may become a necessity. How do we determine who lives and who dies?

The United States has federal laws, most notably the Americans with Disabilities Act, that prevents health care discrimination based on a person’s disability. There are, however, loopholes that allow doctors to decide who gets medical care when there is an extreme situation such as war, natural disaster, or a pandemic. Doctors are allowed to determine who would do best with a treatment when care must be rationed, but that decision must be based on objective medical evidence. The Office of Civil Rights at the Department of Health and Human Services has attempted to clarify by explaining that doctors cannot deny treatment to people with disabilities because of stereotypes, opinions on quality of life, or judgments about a person’s value to society based on disabilities or age.

Alone in the hospital?

Having an advocate is essential, especially for people who are non-verbal or, like my brother, have limited communication skills. At the beginning of the pandemic, one of the issues that caused significant anxiety for me was the thought of my brother being hospitalized without someone there to advocate for him and comfort him. David doesn’t understand anything about the virus. The nightmare image of him being alone, sick, confused, and scared in an ICU unit caused more than a few sleepless nights for me. Having the responsibility of making “end of life” decisions for him is a heavy responsibility. Currently, most hospitals will allow people with intellectual disabilities to have a support person in the hospital with them.

It wasn’t that way initially, and the absence of advocates allowed people with disabilities to be treated with prejudice. In Oregon, a woman with intellectual disabilities who had a positive diagnosis of COVID-19 was asked to sign Do Not Resuscitate orders and a Do Not Intubate order. She was alone in the hospital, struggling to breathe, and did not understand what they were asking, but she signed. The home she lived in was alerted when the medical staff asked the home to have all residents sign DNR orders in case they were brought to the hospital. This set out a red flag to the staff, causing them to question the hospital’s motives. There was an implied assumption that the presence of intellectual disabilities made a life not worthy of saving. Lawyers for people with disabilities intervened, and the woman was placed on a ventilator. She eventually recovered and returned to her group home.

These are worries that those with disabilities and their families and caregivers should not have to face. The value of a life cannot be based on abilities or IQ. Unfortunately, it’s all too common throughout history; the global pandemic has only served to bring it to the forefront. I thought we had made progress in the way we viewed people with disabilities, but a pandemic tends to bring out people’s true colors, both good and bad. Unbelievably, it seems the inherent value of people with intellectual disabilities is once again a topic open for debate.

Why Not?

Despite the threat of people with intellectual disabilities facing an increased death rate due to COVID-19, there is some skepticism about the vaccine in the community of special needs families. There has been a sordid history in the relationship between the medical research field and people with intellectual disabilities, as well as other marginalized populations such as prisoners, people of color, and people with mental illness. Although there is no evidence of this being true in the case of COVID-19 vaccines, there is fear in some of these communities.

There has also been so much misinformation surrounding the vaccines. I encourage everyone who is trying to make a decision to do several things: talk to your physician, read the research that is scientifically, not politically, based, and consider what your options might be. The Tulsa Health Department is a good, reliable source for information. As my brother’s guardian, I knew giving permission for him to receive the vaccine was the correct choice for him. His chances of surviving any side effects from the vaccine are much higher than if he were to get COVID-19 a second time.

Why

The vaccine is our best hope to move on from this virus. Because people with intellectual disabilities are at higher risk of death if they get COVID-19, the need to vaccinate as soon as possible is imperative, assuming there is no contraindication. For people like my brother who live in group housing, the risk is even higher. I’m thankful most of his home was able to get the vaccine, and I hope that others will be vaccinated soon. We will soon have a national plan to get the vaccines rolled out more efficiently, and we will slowly be able to move past this global pandemic. Until then, wear your masks, wash your hands, and maintain social distance. Your efforts may save lives!

One vaccine done, one to go for my brother!