​ Patient Perspective

Caring for the disabled

Pandemic-driven new challenges

By Joan Willshire, MPA

or people with disabilities, pandemic-related isolation can be terrifying and tragic. The stress can exacerbate mental illness and other health problems, some of them life threatening. Add the loss of mobility and independence, the disruption of routines, the day program that doesn’t open, the beloved caregiver who doesn’t come, and the lack of support that leaves some families no choice but to institutionalize their loved ones, and you have a sense of what many in the disability community are going through every day due to COVID-19.

People with disabilities have been living in isolation for decades, but now their isolation is compounded—particularly for those in congregate living, since many facilities have enacted rules limiting visitation. It’s easy to feel totally alone and without family support because so many people stay close to home, avoid gatherings, and are unable to visit loved ones in a closed facility. The shortage of personal care attendants adds to this issue.

Lapses in routine care can turn into crises when people with disabilities go to hospitals, where exposure to COVID-19 is a real danger. When a person with a disability becomes critically ill with the virus, is that person the first or the last to receive critical medical care if ICUs are full and ventilators are scarce?

A heightened awareness of these issues and a few simple tips could help physicians provide more effective care for patients with disabilities.

​COVID-19 appears to pose a greater risk ... for those with intellectual and developmental disabilities.

Levels of care

Several states—among them Alabama and Washington—have seen lawsuits alleging rationing and improper levels of critical medical care being delivered to the developmentally disabled population. In response, states agreed to review and update their medical standards of care to address rationing and discrimination against people based on disability, age, or perceived low quality of life.

Excluding certain people with disabilities from access to life-saving treatment such as ventilators based on their disabilities and deprioritizing others based on their disabilities is not the solution to saving supplies or the rationale for choosing who receives critical care during this pandemic. States must also continue to comply with the 1999 U.S. Supreme Court ruling in Olmstead v. L.C., which stated that people with disabilities have a right to access to services in the community of their choice. The medical community must avoid moving people with disabilities into institutional care just to ensure that they are safe. The question is whether or not their safety justifies their segregation. Congregate settings often are not the best solution because of limited support and resources for disabled individuals—as well as heightened risk of exposure to the coronavirus.

Behavioral health issues

It is very common for people with physical disabilities to have mental health issues as well. For these individuals, isolation can compound symptoms due to stress and anxiety. Individuals with mental illness may not want to go to a clinic for a variety of reasons, including fear of exposure to the virus. A physical disability could also be the reason stopping them from getting to a clinic with limited access if they start to show signs of the virus. The negative stigma of mental illness is as much of a barrier as stairs in front of a clinic door.

Individuals with mental illness may also distrust the medical community due to previous traumatic experiences in and out of hospital settings. Because of this distress, they put off seeking treatment even if they have symptoms. If they contract COVID-19 and recover, they fear having a chronic respiratory condition.

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Heightened risk

According to an article in the June 2020 issue of Disability and Health Journal, COVID 19 appears to pose a greater risk of severe outcomes, including death, for those with intellectual and developmental disabilities (IDD), especially those living in a congregate residential setting. More common disabilities, such as cerebral palsy and Down syndrome, also are in this category, with patients who are more likely to have pre-existing conditions.

People with disabilities are used to the uncertainty of medical care. For example, they’re used to having to try things out first to see if tools, treatment, or equipment intended to comply with the Americans with Disabilities Act are truly accessible.

Staying at home

We need to ensure that people get support to stay in their communities and don’t get transferred to nursing homes. For many people with disabilities and the elderly, personal care assistants (PCAs) allow them to live and work independently. Such care is also available in congregate settings, but often with limited support and resources. Living in the community of one’s choice is the preferred option for people with disabilities.

Patients on medical assistance who are living independently may also consider person-centered assistive technology through organizations such as Live Life Therapy Solutions.

Talking to patients

National public health and infectious disease experts recommend wearing a face mask in public places such grocery stores and pharmacies, where it is hard to stay six feet apart from other people, and many businesses and government agencies may require visitors to wear masks. Gov. Tim Waltz’ Executive Order 29-81 went further, requiring Minnesotans to wear face coverings in certain settings to prevent the spread of COVID 19, but allowed an exemption for people with a medical condition, disability, or mental health issue that makes it unreasonable to wear a face covering.

Clinicians are faced with a new quandary if patients with disabilities who are unable to wear a mask request these exemptions. Physicians have no obligation to provide a mask exemption to patients, if it is not medically warranted. They do, however, have a clear obligation to address individual patient’s concerns, discuss appropriate alternatives, and offer clear recommendations for risk-reducing measures when patients are venturing into public places.

​We need to ensure that people get support to stay in their communities.

Wearing face masks presents a serious challenge for members of the deaf community, who may count on people speaking louder or being able to read lips. I have found it very difficult to hear and understand people talking with their masks on. Masks compound these challenges to effective communication, particularly under the current six-foot social distancing guidelines.

Some simple tips for doctors: slow down your speech, increase the volume of your voice slightly, and say the person’s name when you enter a room, so they know you are addressing them.

Telemedicine

Many clinics now offer expanded virtual medical visits, which can be a good alternative for people with disabilities. However, there is concern that telemedicine will not meet the needs of all people with disabilities. Sometimes the provider needs to see an individual in person to truly find out what is going on. The deaf community also struggles with the technological connectivity of virtual visits. Broad band for virtual visits has its challenges in the rural areas as well.

Still, people with disabilities seek a level playing field, and online medical appointments have advantages. The patient may not look as disabled during a telemedicine encounter. There’s no preconceived notion that comes with seeing somebody walk in using a cane or wheelchair. I know from personal experience that when I went from using a cane to using a mobility device, perceptions changed about what I was capable of doing.

Physicians cannot address all of these limitations of telemedicine, but they should be aware of them. One important recommendation for providers is to offer accessible documents, such as large print, audio, and accessible PDF versions of forms and important information prior to the session. Having accessible health care documents on hand helps both medical staff and the patient with a disability, especially when people can’t bring relatives or friends with them into the clinic or hospital during the pandemic. Clinics must allow PCAs and/or guardians to accompany the person with a disability.

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To illustrate this difficulty, imagine that your health care provider needs a signature acknowledging that you understand a document. You ask to see it, but they tell you it’s only available in a language you don’t read. However, they’re happy to help! They briefly and cheerfully describe what their document entails. Unfortunately, you still don’t get the opportunity to read it yourself. You just have to take them at their word. Would you feel comfortable signing the document saying that you understand the agreement?

There’s no denying that offering accessible health care documents is the right thing to do. But, beyond that, physicians must be able to show that they are able to “walk the walk” and prove that their organization truly cares about its patients with disabilities. Having alternative formats will also help you avoid accessibility-related lawsuits.

Summing up

We need to find a way to live in a COVID-19 world and bring individuals, family, and friends together without creating unnecessary danger for those individuals who have not agreed to the risk or should not be subjected to risk.

Joan Willshire, MPA, is CEO of Willshire Consulting LLC. Her focus is on disability inclusion and equity. Previously, Joan was the executive director at the Minnesota Council on Disability for 16 years. Throughout her career, Joan has been active within the disability community and has served on several boards, including the Minneapolis Advisory Committee on People with Disabilities and  Accessibility Inc. She was recently appointed to the University of Minnesota Centers for Transportation Studies and Research Executive Committee.