Living at home, not in a home

The report that New York State Attorney General Letitia James released in late January showed just how dangerous nursing homes and other institutional care situations are to the New Yorkers who live in them.

James showed that, tragically, thousands of nursing home residents died from COVID-19 after getting the deadly virus at these facilities, even though they eventually may have died in a hospital. Other residents remain isolated because their family and friends are unable to visit them because of the pandemic.

The attorney general’s report delivered recommendations to improve nursing homes and other crowded group settings (also known as “congregate care” facilities). But it’s not enough just to encourage nursing home residents or their families to find other nursing homes that may seem “better.”

It also doesn’t make sense to throw more money at nursing institutions. The problem is the congregate care system itself.

In fact, many New Yorkers already benefit from other, smarter options that keep people at home, able to see their families and live fulfilling lives. And many thousands more could benefit, if the state redirected its focus and spent its money more wisely.

I should know. I benefit every day from the Consumer Directed Personal Assistance program, which allows me to live independently in my own apartment, work a rewarding job, and most important, control my own life.

I became a person with a disability in 2002. I spent time in and out of hospitals, and for one brief, scary period, in a nursing home. Thankfully I had an alternative, a program that let me hire the aide who was right for me. My first aide stayed with me for 17 years until she moved out of New York City. My current aide has been with me for two years.

Think about what you would want if you became disabled or could no longer live at home without help. Which would you prefer: the ability to stay at home and manage your own care — or to move to an institution where every decision of your day is regimented and determined by someone else, from what you eat to who you live with?

Most, if not all, people would opt to live at home, as I have. I wake up every morning thankful that I have the option.

But that choice is out of reach for many New Yorkers. State government has catered to nursing home operators instead of fostering other alternatives. We’ve seen the tragic result over the past year, but what’s happened is no surprise to me or my colleagues.

We’ve known for years about the conditions of people with disabilities and older people, who languish in nursing homes and other congregate care settings that are understaffed, have poor infection control and inadequate oversight and enforcement.

Add COVID-19 to the mix, with personal protective equipment unavailable, or in some cases discouraged, and you have a system that puts tens of thousands at risk for sickness and death.

Bizarrely, though, some of our public officials are saying that one of the lessons learned from COVID is that we need to spend even more taxpayer money to support nursing homes. There’s no doubt the state needs to beef up its oversight over nursing and other institutional settings, of course. But that won’t make them safe enough or more homelike.

Instead, it’s time for the lawmakers to boost other community-based living options that currently are woefully underfunded. These other options work for disabled and older New Yorkers, as they have for me.

In fact, my employer, the Brooklyn Center for Independence of the Disabled, is one of 41 independent living centers across the state that provide help in preventing people from going into nursing homes — where I might have ended up — and assistance in getting people out of them.

BCID and the other centers have prevented hundreds of our neighbors and family members from being institutionalized, and helped hundreds more transition out of institutions — which often requires immense effort — back into community-based settings. Over the last 20 years, the work of centers like mine to transition and divert people with disabilities from institutions has saved our state more than $2.5 billion.

New York State shouldn’t be wasting money, especially in this difficult budget year, to prop up failed nursing homes and other institutions where safety is an issue. Now is the time to transform our long-term care system and phase out nursing homes as we know them today, including providing adequate support for independent living centers and home care aides.

If they had the choice, the vast majority of New Yorkers would choose to live at home, not in a home, just like me. Let’s learn from COVID-19 and redirect public dollars to make that the standard approach from now on.