After a 1972 television program exposed graphic footage taken of the horrendous conditions inside the children’s ward at the Willowbrook State School in Staten Island, it was shut down. The State of New York ultimately replaced institutions like Willowbrook with smaller, community-based residences as part of a landmark settlement. 

What You Need To Know

  • The first of two legislative hearings on nursing homes and COVID-19 takes place Monday via Zoom
  • Over 6,000 nursing home residents died as a result of the virus
  • Consumer Directed Personal Assistance is an alternative to nursing home care
  • The executive director of CDPAANYS compared nursing homes to the historic institutionalization of people with mental illness

As Albany continues its reckoning around nursing homes in New York which were ravaged by COVID-19, one advocate is asking whether it’s time to end the institutionalization of the elderly.

“I have epilepsy,” Bryan O’Malley, the executive director of CDPAANYS told Spectrum News. “For most of the last century, I would have not been talking to you, not testifying before the legislature today. I would be in a colony for epileptics in Western New York.”

Instead, argues O’Malley, that system was replaced, and it may be time to replace nursing homes as well.

“New York is synonymous with deinstitutionalization since Willowbrook. This is one of those moments in history when we need to look at it and say, ‘We need to change our system,’ ” he said.

O’Malley says if New York state shifts its attention and resources away from nursing homes and instead builds on and invests in a system of caring for people in their homes, outcomes would be better across the board.

The results of a study done by the University of California, San Francisco, indicate that the average age of participants when they moved to a nursing home was about 83. The average length of stay before death was 13.7 months, while the median was five months. The same study showed that 53% of nursing home residents in the study died within six months.

The UCSF study was done prior to COVID-19. Meanwhile, according to O’Malley, the Medicaid Institute at the United Hospital Fund did a separate study showing that the average person gets personal care for five years.

“Clearly, personal care results in better outcomes and quality of life,” said O’Malley.

His testimony before the legislature Monday will focus on two issues: that the problems at nursing homes aren’t new, and they more heavily affect people of color.

“Our primary message, and what I’m hoping legislators key in on during the course of the day, is that the problems that we saw in COVID aren’t new,” said O’Malley. “COVID just shined a spotlight on a number of problems that have always existed in nursing homes and made them worse.”

O’Malley says that while consumer directed care is slightly more expensive, the care is better and replaces acute costs, like hospital visits.

Personal care is care that is received within the community, typically at a consumer’s own home, or that of a relative. It is individualized. Within consumer directed care, a client is additionally guaranteed the same caregiver every day, which O’Malley says leads to better outcomes.

“Poor people go to nursing homes,” he said.  “I guarantee you Mike Bloomberg never will end up in a nursing [home]. He has the money and the resources. He will make sure people are coming to his home no matter how sick he gets.”

O’Malley also argues that communities of color have been the hardest hit by COVID-19 in nursing homes.

“One of the pieces we saw in COVID was that nursing homes were not all impacted equally, right?  It was very clear that if nursing homes had a high number of black and brown residents, they had a higher mortality rate,” he said.

Under the consumer directed care model, the elderly can choose who cares for them.

“If you only speak Korean, and you’re hiring your worker, odds are that person is going to speak Korean. If you need to keep Kosher, or if you eat Halal food, the person you hire will be willing and able to cook and prepare your food in the way you need that’s culturally appropriate,” he said.

In other words, O’Malley believes that when a person is in control of their own services, it goes a long way toward alleviating many other problems.

“Ideally, if you look 50 years from now, we won’t have long-term stay nursing homes,” said O’Malley. 

“There will always be a need for acute care nursing homes, somebody coming from the hospital for two weeks. But there’s no reason somebody needs to be in a nursing home.”