Patient Perspective

The Impact of COVID on People with Disabilities

A need for proactive planning

By Joan Wilshire, MPA

The fear is real

Even with vaccinations, booster shots and new antivirals coming out there is still much fear within the disability community. It’s an invisible threat, since we don’t know who is infected or who is contagious. We don’t know how the COVID infection will affect us, or how long it will last. People with disabilities have been hiding for the last two years; it’s like playing a game of hide and seek with the coronavirus. As the isolation continues, it is not surprising for people with disabilities and/or with chronic medical conditions to fear being left behind. Historically, people with disabilities have been left behind during natural disasters like floods, tornadoes, hurricanes and pandemics. They have come to expect it.

Continued isolation may result in people with disabilities becoming more disabled.

A prime example of being left behind is the vaccination priority guideline developed last year. People with disabilities who have chronic medical conditions were not necessarily high on the list because priorities were based on age. The vaccination priorities seemed to say that people with disabilities were an afterthought and nobody ever wants to be an afterthought. You can really see what it is like to be an afterthought when there’s been little consideration for you, there’s no protocol for you and no way for you to have a voice in the process either. I was not eligible to get my first vaccination shot until April 1. In the room where I sat waiting for the injection, several people were using oxygen, some were in power wheelchairs and others were using canes or walkers. Why weren’t all of us on the priority list?

At the beginning of the pandemic, people with disabilities worried “would my life as a person with a disability be deemed valuable enough to live” if there is a shortage of resources? Some people with disabilities are dependent on ventilators to live. If ventilators are scarce, are we going to have to give up a ventilator to provide for COVID ICUs? People with disabilities and chronic medical conditions, are affected in many additional ways, such as restricted breathing and speech, when complying with mask requirements. Virtual doctor visits might not be appropriate but health care centers and clinics were closed to in-person visits, accessible transportation was limited by driver shortages, and many COVID testing sites had limited accessibility.

Proactive planning

The biggest issue I’ve seen during the pandemic is the lack of proactive planning by the medical community for people with disabilities. People with disabilities who also have chronic medical conditions and test positive for COVID, need to have a proactive plan set up by their physicians because they are at higher risk. Having a plan gives the person some sense of control and protection if diagnosed with COVID. I was fortunate in that my infectious disease physician created a plan for me around what to do if I were to test positive for COVID. I immediately will contact her office to have a prescription for one of the antiviral medications sent to me. The plan gives me a little peace of mind in that at least there has been a discussion of what I need to do in this scenario. Trust me, when I enter a hospital with my variety of medical issues I present a challenge to figure out what should be done immediately.

Another big concern is not being allowed to have anyone with me to advocate for my treatment plan. The physician’s plan should be available and implemented immediately. I have been living with MS for many decades. I always have been careful during flu season to avoid the latest influenza and I have been pretty lucky avoiding COVID. I order my groceries, clothes and other household necessities on line. I have had virtual doctor appointments but there are a few doctor appointments require in-person visits to receive the necessary medical care. 

Going above and beyond

During the peak COVID surge I had a variety of medical experiences where physicians and nurses certainly went above and beyond routine care to keep me as healthy and safe as possible. In the last two years I’ve had several doctor appointments in my car, literally. You could call them drive-up or drive-by appointments. I’ve had a nurse come out to my car to get the urine specimen container to take up to the lab and I’ve also had the nurses come to my car to monitor an implanted device. The best example is the biopsy I had in my car last year. I have had a history of squamous cell skin cancer and I had a suspicious spot on my hand. I contacted the doctor and she said, “I do not want you to come in the clinic. I will come to your car and do the biopsy.” That is exactly what she did. And yes, it was cancer, so I am grateful we were able to do this immediately rather than waiting. I collaborate with all of my physicians on an ongoing basis to keep myself safe from COVID while managing healthcare needs that can not be put on hold.

I have a sister with an auto immune disease for which she takes a new medication that lowers her body’s ability to develop antibodies. So even though she’s vaccinated and boosted, she does not have enough of the antibodies to protect against COVID. I have not seen her in two years because she has been homebound. Her game of hide and seek is still very real. COVID has definitely made a negative impact our relationship. Her medical professional created a plan for her that includes taking a newly approved drug that will help her body build antibodies. Now she feels like there is a light at the end of the tunnel.

Vaccination priorities seemed to say that people with disabilities were an afterthought.

I have a friend with many autoimmune conditions, type I diabetes being the most serious. She does a great job of taking care of herself, as her diabetes is very much uncontrolled. She knows that a COVID infection could be very serious for her and poses an elevated risk of death. She has not gone anywhere in the past two years other than 7 a.m. trips to the grocery store. Right before COVID hit she bought a retirement home in Phoenix, Arizona. Unfortunately, she hasn’t even traveled for a short visit because she just doesn’t feel safe flying. She is concerned that as new treatments are developed, as in the earlier vaccine priorities, they won’t be readily available to help people like her. People with disabilities followed the age requirements and those who have chronic medical conditions were not allowed a higher priority to receive vaccinations. 

When I told her that I had a plan with one of my physicians, she said, “ That is exactly what I need. A plan would me feel like I have options in place to protect myself from COVID.” Another friend, who is mildly affected by Cerebral Palsy was sick with COVID last fall. He told me about feeling extremely fatigued and losing his senses of taste and smell. He just didn’t want to eat and had to remind himself to continue to keep his nutrition intake going or he would be too weak to even try to do anything for himself. I asked him if he called his doctor and he said that he did not. He was surprised that the COVID infection made his Cerebral Palsy symptoms, especially spasticity, worse. There hasn’t been enough conversation regarding additional challenges people with disabilities face when they get COVID. Talking to a medical provider could help them plan for possible effects that are specific to their personal medical needs. We need physicians to help guide some of this discussion. No assumption should be made that they have accessible transportation to clinics, that they have adequate personal care assistance or have access to over-the-counter medicines to combat COVID side effects.

Moving forward

Now that more and more states and cities are lifting the mask mandate, individuals with no underlying medical conditions are ecstatic to have their faces uncovered. But people with disabilities who have chronic medical conditions look at this as an ongoing time of uncertainty. During the pandemic there have been many challenges for everyone, but even more so for people with disabilities. These challenges may include the inability to wear a mask or lack of communication tools and barriers to visiting health centers for COVID testing or vaccinations. Trying to figure out accessible transportation to a medical clinic or hospital has been more difficult because of COVID restrictions.

The good news is we are moving into the next phase of the pandemic where we will continue to see fewer cases. However the pandemic isn’t over yet which means the fear and uncertainty will persist among people with disabilities. We will all need to continue to be safe and to partner with our providers in ways that consider more specialized health care needs.

Joan Wilshire, MPA is a disability inclusion specialist and president of Wilshire Consulting LLC.  Prior to this she served for 15 years as executive director of the Minnesota Council on Disability.

Assessing the Negative Impact

The National Council on Disability (NCD) recently issued a report that examines COVID-19’s disproportionate negative impact on people with disabilities across seven critical areas releasing findings and recommendations. For decades, federal and state healthcare data collection practices failed to capture baseline information about the functional disability status. This data dearth created barriers in collecting real-time accurate data about the impact of COVID-19 on people with disabilities and the healthcare disparities they experienced.

Findings COVID-19 exacted a steep toll on people with disabilities, posing unique problems and barriers. People with intellectual or developmental disabilities, and medically fragile and technology dependent individuals, faced a high risk of being triaged out of COVID-19 treatment; were denied the use of their personal ventilator devices after admission to a hospital; and at times, were denied the assistance of critical support persons during hospital stays. Informal and formal Crisis Standards of Care (CSC) targeted people with certain disabilities for denial of care.

Limited opportunities to transition out of congregate settings to community-based settings revealed continuing weaknesses and lack of sufficient Medicaid Home and Community-Based Services (HCBS). People with disabilities and chronic conditions who were at particularly high risk of infection with, or severe consequences from the virus, were not recognized as a priority population by many states when vaccines received emergency use authorization.

Both youth and adults who had mental health disabilities that predated the beginning of the pandemic experienced measurable deterioration over its course, made worse by a preexisting shortage of community treatment options, effective peer support, and suicide prevention support.

Recommendations Include

Healthcare 
Congress or the Department of Health and Human Services (HHS) should require all hospitals and managed care plans that receive federal financial assistance to increase public transparency of, and nondiscrimination and due process within, crisis standard of care (CSC) guidelines and medical rationing policies adopted during public health emergencies and emergency surge situations. HHS’ Office for Civil Rights (HHS OCR) should develop a Patient’s Bill of Rights for People with Disabilities.

Congregate Care Facilities 
Appropriate government agencies should develop and implement a strategy to mitigate the risks of infectious disease transmission in CCFs and address the civil rights concerns that impact the lives of people with disabilities in CCFs. Centers for Disease Control and Prevention (CDC) should emphasize CCF census reduction as an infection control strategy by expanding its guidance beyond long-term care facilities (LTCFs) to include all CCFs and emphasize that reducing the census of CCFs through accelerating discharges and diversions is a critical strategy.

Education 
Congress should enact measures that include funds dedicated to compensatory education for students with disabilities who could not receive necessary services and supports during the pandemic and who have experienced disruption and regression in their behavioral and educational goals.

Employment
The Office of Personnel Management (OPM) should maintain maximum telework flexibility for all federal agencies on a permanent basis and ensure that federal employees with disabilities receive necessary, reasonable accommodations in their technology while working remotely and retain flexibility to work from their designated federal office as needed or desired.

Effective Communication

All federal entities involved in public health, emergency management, and the provision of public announcements or briefings of broad public importance should prepare and disseminate information related to any pandemic or public health emergency in accessible formats, including providing sign language interpretation and/or captions during live and prerecorded video briefings; making all written materials available in alternative formats; and making all online materials accessible.

Mental Health and Suicide Prevention
States should expand the mental health workforce and peer support workforce, including through using HCBS dollars and mobile crisis dollars available through the American Rescue Plan and Certified Community Behavioral Health Center (CCBHC) funds.

To access the full report please visit:
https://ncd.gov/progress report/2021/2021-progress-report