What could be a stronger case for community living?
By Sarah K. Lanzo
For decades, people with disabilities, the elderly, and people with underlying conditions have been directed to expensive, indifferent, isolating places to live, called nursing homes or “community living opportunities”, (commonly called “Group Homes”). But since the early days of reporting on the spread of the COVID-19 Coronavirus in the United States, it’s been noted that some of the heaviest concentrations of infection have been in nursing homes and similar institutions. Even more disturbing to learn is that there’s a heavier risk of infection and death to residents and staff at a subset of these: namely, group homes for people with developmental disabilities (DDs). According to National Public Radio (NPR), those who have studied this situation in two states that gather statistics note that: in New York, currently the state with the most deaths from COVID-19, people with DDs die at a rate 2.5 times the rate of others who contract the virus.
Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs, who has been collecting his own data from state and private research groups, told NPR that people with developmental disabilities who live in group homes have some of the highest death rates from the pandemic in the country. Specifically, "They're more likely — four times more likely, we're showing — to actually contract COVID-19 than the general population," he says. "And then, if they do contract COVID-19, what we're seeing is they're about two times more likely to die from it." Reports have frequently noted that the infection rates in African Americans and Hispanics have been disproportionately high compared to the overall population – these are worse!
The likely causes: DD individuals are far more likely to have a preexisting health condition, such as respiratory disease; and they more frequently are in group homes where two or four or ten or more people live together. If you’re in a facility with multiple roommates, Landes says, "your chances of actually contracting COVID are high. And then if someone in your home gets it, it's like there's nowhere you can go."
Tom McAlvanah, President of New York Disability Advocates, a coalition of service providers, added that it has been hard to keep workers healthy and on the job. A direct service professional working in a group home makes little money — "at or below the poverty line” for a family, in the mid $20,000s per year. Conditions at their workplaces and frequent reliance on public transportation make them especially vulnerable. Furthermore, the primary funding source for group homes, New York's Medicaid program, was minimizing reimbursements even before the pandemic, and with residents with disabilities no longer able to go to outside jobs and staying home full time, staff have to work overtime to assist them.
On numerous occasions, I have identified many in-home opportunities open to people with disabilities, and the elderly, in the way of community living options. If this pandemic teaches us anything, it’s that when we put all our fish in the same bowl, and that environment becomes infected, the fish will die.
So, what better case can I make for the independent living option of individual in-home health care? It not only provides a better chance of staying healthy and safe in this kind of crisis, it saves the taxpayers thousands of dollars per person, improves that person’s quality of life, and, most of all, it keeps the individual in charge of his/her own life or death decisions.
Sarah K. Lanzo is the Director of Independent Living of Niagara County, a member of the Western New York Independent Living Inc. Family of Agencies. They empower individuals with any disabilities to gain the information and resources needed to improve their quality of life and participate in society on an equal basis. For more information about ILNC's services and programs please contact: (716) 284-4131, ext. 200.