Maintaining Your Physical And Mental Health
Whether physical (accessible medical offices, proper medical equipment in exam rooms, the ability to be weighed accurately, being able to get out of a wheelchair for a comprehensive examination) or due to providers who are either uninformed or indifferent to the needs of disabled patients, the barriers people with disabilities face when going to the doctor can be overwhelming and frustrating. People with disabilities make up 25 percent of the population, yet in much of today’s world of modern medicine, the accommodations and resources needed to deliver equitable care to such a large group are simply, and without justification, missing. That is unacceptable.
With the arrival of the COVID-19 pandemic, the healthcare disparities of marginalized groups grew as healthcare systems faced a new, unprecedented reality. As has always been the case, the pandemic hit hardest among our most underserved and vulnerable populations. People in long-term care facilities and those living in community-based settings were casualties of all-too-often unequitable environments, and experienced a disproportionate share of deaths attributed to COVID-19 to date. An accurate accounting of exactly how many people in these settings were lost to the pandemic is not – and may never be – truly known.
Sadly, but not surprisingly, physicians — even three decades after the Americans with Disabilities Act (ADA) was implemented — still lack an understanding of their legal responsibility to support the needs of people with disabilities seeking quality, disability-competent care.
The COVID-19 pandemic has also shone a light on the limitations of the U.S. healthcare system’s ability to care for those facing mental health conditions. Yet again, the critical issue of mental health hit people with physical disabilities especially hard during the pandemic. Even before COVID, people with disabilities were found to be more susceptible to suicidality, aligned with abuse and isolation. Depression and suicidal ideation are two serious concerns that are prevalent among people with disabilities.
The challenges of mental illness
Physical barriers to care are challenging enough, but when combined with mental health issues, healthcare inequity for people with disabilities becomes even worse. According to the Centers for Disease Control and Prevention (CDC), “adults with disabilities report experiencing frequent mental distress almost 5 times as often as adults without disabilities.”
In 2018, an estimated 17.4 million (32.9 percent) adults with disabilities experienced frequent mental distress, defined as 14 or more reported mentally unhealthy days in the past 30 days. Frequent mental distress is associated with poor health behaviors, increased use of healthcare services, mental disorders, chronic disease, and limitations in daily life.
Many of the issues mentioned here about access to healthcare services, like limited and unreliable transportation, inadequate accessibility of medical facilities, and attitudinal barriers physicians have towards patients with disabilities and the potential of ADA lawsuits, are contributing factors to the heightened and often persistent mental distress experienced by many people with disabilities. Ours is a society where, for far too many, the unequitable environment in which our healthcare system operates creates a sad and entirely unnecessary reality that can have a serious negative effect on one’s quality of life. A long overdue change is needed and, even though a shift has begun, it feels too little, too late for many people with disabilities.
Some signs of progress
Over the past year, we have seen a multitude of diversity, equity and inclusion initiatives that came about during the pandemic. These initiatives have made the medical world prioritize addressing the unequitable divide that exists for people with disabilities.
Medical schools are one entity attempting to bridge the gap of this divide. They’re not only addressing issues of race when training future physicians. Schools are also making sure their medical students understand the ADA and the responsibility of physicians to provide accommodations where and when needed for their patients. Meanwhile, medical practices can start making improvements to their care delivery by asking patients with disabilities if they need accommodations when coming in for an appointment.
Physicians must be disability-competent and support patients who may not know what they need or what is available and are looking to their doctor to provide suggestions. Medical facilities must be accessible — that incudes wider doors, examination tables that lower and rise, and alternative resources for patients if their facility falls short serving patients. Disability-competence is not limited to doctors, though. All medical office staff must also be disability-competent to best serve the healthcare needs of all patients.
When it comes to mental health, the medical world may be out of touch with the needs of people with disabilities. That is why it is so important for the disability rights community to take an active role in pushing for changes that will bridge the gap to adequate mental healthcare. As with any other group, people may feel averse to educating the masses about what, to them, is obvious. However, we must be the catalyst for change. This means knowing what to do if you are sick, where and how to get mental health treatment, and taking care of your emotional health.
Ensuring for sound mental health
Knowing the ins and outs of accessing mental healthcare services may sound like a lot of work, but it is crucial. People with disabilities need to evaluate their needs and put together a healthcare plan that addresses those needs. Unsure of what you need? Reach out to an Independent Living Center or locate a rehabilitation counselor to assist you. In addition to those resources, you should look back on your own lived experiences, or take advantage of the knowledge and experience of your peers.
As an advocate myself, I’ve been part of multiple integrative meetings during the pandemic where participants have indicated an inability to obtain mental health services. They’ve said they do not have the “right” insurance, as many are on Medicaid. It was also evident that appointments were not always available.
Here again, the challenge of access has only been made more clear due to the toll the pandemic has had on mental health. This has led to a broadening of mental health services. You can see the increased focus on mental health and mental illness with commercials featuring endorsements from athletes-turned-spokespeople like Michael Phelps for Talkspace and Simone Biles for Cerebral. Although these services have good intentions, they are often resources that are unavailable to those in lower income brackets. That means there is more work to be done to ensure mental healthcare is available to all.
Additional options and resources
Finding an accessible medical facility and building the right team of professionals for your needs is key. Find a primary care physician (PCP), a physiatrist or therapist and, from there, ask about additional options that will support your mental health wellness now and into the future.
If a facility does not meet your needs, ask for a referral to additional resources. Remember, it is YOUR health we are talking about and you are in charge of deciding what care is right for you. That is why it is so important for you to understand your needs and rights, and then work to remove any barriers that are keeping you from the equitable, disability-competent healthcare environments, providers, and services to which you are entitled.
For additional resources for people with disabilities, see these sites:
About The Independent
The Independent is ICS’ official newsletter, featuring the latest stories around ICS, its members and staff, as well as news on what’s happening in the disability community at large.