Disabled New Yorkers Afraid of Losing Care

City Hall

Disability rights advocate, Jose Hernandez, 45, describes June 19, 1995 as the day that changed his life forever. Hernandez, then 15 years old, sustained a spinal cord injury at Orchard Beach, leaving him permanently disabled. He spent most of that morning playing basketball; by the afternoon, he had lost all mobility below his shoulders. He has received assistance from home care aides for the last 31 years. They help him perform the basic functions of life.

“Dressing, bathing, toileting, meal prep, cleaning house, turning and positioning, you name it, they provide for it,” said Hernandez. “They’re an extension of my body where my body has failed me.”

Hernandez is now concerned that thousands of disabled New Yorkers like him are at risk of losing their home care because of new legislation from the city council.

“I live in a heightened sense of anxiety as a person with a physical disability. Because at any moment in time, a legislator can write a bill that can completely upend my life,” said Hernandez. “This is what it feels like.”

In April, Council member Christopher Marte introduced Intro 303, or the “No More 24 Bill,” prohibiting home care agencies from scheduling home care attendants for more than 12-hour shifts. Agencies schedule “live-in” home care attendants for 24-hour shifts but pay them for only 13 of those hours. The attendants are expected to provide 13 hours of care in a 24-hour period, with the remainder of the time being spent sleeping, resting, or on meal breaks. Supporters of Intro 303 argue that this practice exploits home care workers who frequently work more than 13-hours in total to provide care for their disabled and elderly patients.

However, disability rights advocates and other opponents of the bill believe the legislation would only worsen the situation. 

“It sounds like if we pass this, agencies are going to give patients better care. They’re going to split cases and home care workers are going to get better work hours.” said Hernandez. “What they don’t tell people is that agencies can’t change authorizations.” 

Before home care agencies can provide care, they first need to receive a “prior authorization:” approval that a patient is eligible for the care under their health plan. While the state government pays for home care through Medicaid, private companies called “managed care organizations” (MCOs) are the ones who actually authorize the care. If an MCO deems that a patient’s needs are less frequent, it can only authorize “live-in” or “24-hour” care in which one attendant provides 13-hours of care over a 24-hour period. If an organization determines that a patient needs a higher level of care, it can schedule “split-shift” care in which two or more attendants work in shifts to provide around–the–clock care.

Opponents of the bill claim that Intro 303 would ban 24-hour live-in care without shifting the patients receiving it to split-shift care, which can only be done by the state legislature.

In a letter to Mayor Mamdani and City Council Speaker Julie Menin, the Legal Aid Society—a legal services non-profit which represents both home care patients and home care workers wrote, “A change in City law will not and cannot change the situation, since the authorization of 24-hour, live-in care is determined by entities governed by Medicaid at the state level.”

“Outlawing shifts over 12 hours per day in New York City would not automatically convert 24-hour live-in authorizations for people with disabilities and older adults into two 12-hour split-shift authorizations,” the letter continued.

Around 13,000 New York City residents receive 24-hour care, according to the Legal Aid Society. Disability rights advocates like Hernandez are concerned that by banning 24-hour care without transferring those patients to split-shift care, the bill would force thousands of elderly and disabled New Yorkers into nursing homes.

“For someone like me, someone that requires a lot of help and help throughout the night, the only option would be a nursing facility,” said Hernandez. “This is why I oppose this bill. A life in a nursing home isn’t living. It’s existing. For many people with disabilities, they describe it as a fate worse than death.”

Disability rights advocate Marcus Johnson, 55, shares Hernandez’s concerns. “When some of my peers go into a nursing facility for one thing or another, it’s so difficult to get back out.”

Johnson, who has been disabled for 35 years, feels frustrated that the perspectives of New Yorkers with disabilities weren’t included when drafting the bill. 

“We are always last to know,” said Johnson. “We’re never part of these conversations.”

Supporters of the bill dispute that Intro. 303 would harm New Yorkers with disabilities.

“There’s no evidence that patients will be sent to nursing homes,” said a spokesperson for Marte’s office. The spokesperson said that disabled New Yorkers being sent to nursing homes was, “…not brought up as a concern by the city administration” at the bill’s public hearing in February.

Opponents of the bill argue that it would also harm the home care workers. 

“Home care workers would lose work as well,” said Rebecca Antar of the Legal Aid Society. “Agencies would just drop these cases.”

Disability rights advocates, like Hernandez and Johnson, are sympathetic to the demands of the workers, but they think the situation can only change through state action. 

“I want my workers to get paid more because the quality of work they do is outstanding,” said Johnson. “So, let’s take it back to where it needs to go, back to Albany.”