INDEPENDENT LIVING: New York's dirty little secret is out

Sarah K. Lanzo

It may seem odd now, but, in the early days of the spread of COVID-19, I was pretty proud of Governor Andrew Cuomo.

Starting in March 2020, when New York state was found to be the largest epicenter of the pandemic in the nation, the Legislature granted him extraordinary emergency powers and the governor’s regular press briefings became the model for everyone else. He was pretty much the first to “bite the bullet” and institute drastic social and work restrictions in the face of a shocked business community — and despite official denials from the White House, which then claimed that the coronavirus was “not really a big deal.” Although there were some subsequent surges, overall, the policy proved sound, as our infection rates were gradually dropping while, in many other states, they were just going up and up.

Then, in late January, came the report of New York State Attorney General Letitia James, revealing that months of investigation into hundreds of for-profit nursing homes exposed New York State’s policy of not reporting COVID-19 deaths of nursing home patients, as such, if they had been transferred to hospitals (something no other state did), and thus drastically under-reporting the lethality of those institutions.

Furthermore, consistent undersupply of Personal Protective Equipment, inadequate testing practices, forcing ailing employees to work, not separating COVID-19-positive residents into separate facilities, and channeling profits into the pockets of owners and investors, rather than using them to purchase equipment or hire more employees in understaffed facilities, had helped to make them pandemic hot spots.

Even with incomplete data from some states, the New York Times estimates that one-third of all COVID-19 deaths in the nation were residents of nursing homes or long-term-care facilities.

Earlier this month, thanks to a lawsuit by the Empire Center for Public Policy, Inc. and the Government Justice Center, it was revealed that the 9,000 official deaths in congregate settings was closer to 13,000. Then in a delayed response to a Freedom of Information Law request and an order by the State Supreme Court, the state Department of Health released figures showing that the true total was closer to 15,000. The original figures had under-reported the institutional coronavirus death toll by more than 50%!

In a particular irony, an act promoted by Cuomo last March, the Emergency Disaster Treatment Protection Act (EDTPA), serves to limit the financial liability of health care providers from pandemic-related harm to those they treat, taking away any incentive to protect their charges. The ultimate recommendation of the Attorney General was: find your loved one a better nursing home.

Amidst listening to all the politically based claims of “coverup” and calls for the governor’s resignation, a fact that no one was discussing hit me. AG James had neglected to consider an even better resolution: fund the programs and resources that would give many people with disabilities and elderly persons the tools they need to live successfully outside of congregate care facilities and institutions in the community. If nursing homes are “super spreader” environments, get people into a residence many would prefer: their own home.

A network of consumer-run Independent Living Centers, the New York Association for Independent Living (NYAIL), points out that the cost of de-institutionalization programs such as Home and Community-Based Services, Open Doors/The Money Follows the Person, and Consumer-Directed Personal Assistance Services, together, are just a fraction of the expense of full-time nursing home care. They are promoting this with the slogan, “In your home, not at a home.”

Isn’t it about time our leaders took advantage of the ideal solution that is right in front of them?

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 that serve individuals with disabilities. For more information, call 284-4131, extension 200.

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