COVID-19 and Advocacy—The Good and the Unacceptable

During this time of the COVID-19 crisis, many activities by advocacy organizations for individuals with disabilities, inclusive of mental and substance use disorders and developmental disabilities, are concordant with APA’s mission and should receive APA’s support. Others are not.

The Good

APA should support the following:

• Calling for new funding initiatives and additional funding or redirecting resources for in-home supports; addressing the critical shortage of personal protective equipment and other medical supplies; establishing paid time off for family caregivers of individuals with disabilities; and appropriating emergency funding for organizations providing treatment to people with mental illnesses, especially programs at risk of being shuttered.

• Pressing for changes in policy to end the Medicaid institutions for mental diseases (IMD) exclusion and to eliminate the 190-day lifetime limit for care in psychiatric facilities for Medicare beneficiaries; expediting reviews of Supplemental Nutritional Assistance Program (SNAP) COVID waivers; increasing flexibility for using the Temporary Assistance for Needy Families (TANF) funds; and limiting the CMS waiver that allows, at the time of an emergency or disaster, acute care hospitals with psychiatric patients in a separate unit or building to relocate only those patients who might benefit from placement in the general hospital.

• Ensuring enforcement of federal and state statutes banning discrimination in providing health care to individuals with disabilities. On March 31, the New York Times reported that “almost all plans give priority to otherwise healthy people who are most likely to fully recover.” The biggest stage upon which the nondiscrimination issue is playing out is states’ crisis standard-of-care plans that address the rationing of health care. These plans are rooted in formulations by faculty of medical schools and law schools, professional societies, the National Academies of Sciences, and state governments. A state can be in a position of not intentionally discriminating against people with serious mental illness (SMI), but nonetheless find that these individuals are at the end of the line for treatment. I will address this complicated topic in a subsequent column.

The Unacceptable

There is one facet of advocacy that APA must vigorously oppose and invite other professional organizations to join us in doing so: Recommended responses to the current pandemic should not be used as a subterfuge to advance an organization’s long-standing agenda of downsizing or closing public hospitals under the misinformed view that (1) every person with a psychiatric disorder can be treated without any degree of coercion and (2) the psychiatric inpatient setting is not the most integrated setting appropriate for anybody.

Advocacy organizations calling for the wholesale discharge of patients, even with new funding (which isn’t going to happen when states are cutting budgets), still haven’t learned the harmful consequences of discharging patients who still require hospitalization. National advocacy organizations are apparently so far removed from contemporary community practices that the services they say will meet the needs of discharged patients are not functioning in any way that would allow them to take on new referrals. It’s unfortunate that these advocacy groups have yet to learn it takes more than good will and money.

There is no doubt that there are risks in having a large number of people with SMI in a hospital. In an article that I wrote with Margarita Abi Zeid Daou, M.D., published in Psychiatric News last month (see follow-up article), these dangers were fully laid out. For a national advocacy group to point out only the downsides of patients staying in the hospital and be silent on both the benefits of hospitalization and the liabilities of being discharged is terribly irresponsible. And the peril is compounded because, as has already happened, state-level advocacy groups take up the call and potentially lead an unsuspecting governor, trying to take the right action, to further compound the state’s problems regarding ill-served people with SMI on the streets, in shelters, in front of a judge, in jails/prisons, or in a morgue as an unclaimed body after a premature death.

The benefits of hospitalization during this pandemic include not being alone, getting daily psychiatric and medical care (much of it face to face), eating nutritional meals (and having staff to assist you if you choke), having someone to pick you up if you fall because you can’t get up on your own, engaging in social activities, having suicide risks mitigated, staying out of homeless shelters and jails, being able to visit with family electronically through video chats, having quick access to testing for COVID-19, being nursed by trained staff when you feel awful because you have symptoms of COVID-19, not being afraid to take a walk outside (because the hospital has areas where you can safely do that), having someone to talk with you in the middle of the night because you can’t sleep and your anxiety is worse than ever, having proper medication available without interruption, having toilet paper and hand sanitizer. ...

An Example

I am ending this column with a description of what is happening at one state hospital during the COVID-19 pandemic so those who advocate that now is the time to protect the lives of people with SMI by releasing them from the hospital might realize the error of such thinking.

On April 15 the census of this hospital, which is usually at or near 100%, was at 84% due to fewer admissions from courts and discharges following the normal course of business. Thus, there has been a little more room on the unit to distance patients farther from each other. Only staff are permitted to enter the building and only if they have no positive response to screening questions and no elevated temperature as determined by measurement taken in a tent at the front door. All staff are required to wear masks; staff who refuse are sent home.

On April 15, all patients were tested for COVID-19 (only three refused to be tested), and all patients started to wear masks. Patients stay on their units, where rehabilitation activities and leisure activities occur. These procedures have gotten results. At the same time that the hospital tested all its patients, the homeless shelter in the city, which like any such shelter does not have an insignificant number of residents with SMI, tested all its residents. The percentage of the 114 shelter residents who tested positive for COVID-19 was 43%; the percentage of the 243 hospital patients who tested positive-positive for COVID-19 was less than 1%.

Every Friday afternoon I co-lead a dance party on a unit where I am an attending psychiatrist. One of my patients, who has very serious social inhibitions, is my co-leader. Neither of us dances very well, but a social worker who moonlights as a dance instructor helps us out. Both staff and patients participate, and we follow social-distancing rules. It’s a raucous time. Does anyone know any individuals with SMI living in the community who are going to a weekly dance party during the COVID-19 pandemic? ■