Running errands, preparing meals, and providing transportation are some of the key tasks that the New York State Office for the Aging ascribes to the 4.1 million New Yorkers who will assume the role of caregiver over the course of their lifetimes. Whether you’re a parent like me, or taking care of a spouse, relative, or friend, caregiving is a full-contact experience. But the role can also be a skilled, critically important career built on mutual trust, respect and — in the best cases — friendship. Home care aides support self-managed, independent community-based living for disabled people and the ability for aging New Yorkers to age in place with comfort and dignity.
However, a bill has recently been reintroduced to the New York City Council that could potentially upset the delicate balance between home care aide and client, threaten aides’ livelihoods, leave clients scrambling to get coverage, and put agencies at odds with either the city or Albany.
Originally brought before the City Council as Intro 0175-2022, Intro 0615-2024 is a reimagining with few changes, also known as Maximum Working Hours for Home Care Aides. It is being sponsored by 14 City Council members. The bill aims to set the maximum number of daily and weekly working hours an employer may set for a home care aide. The limits presented in the bill include 12 hours daily and 56 hours weekly. In the event of an emergency, a home care worker would be permitted to work a maximum allotment of two additional hours per day or 10 hours per week. Anything exceeding those set limits would require giving two weeks notice and written consent from the home care aide. Upon employment, they would receive a Notice of their rights from their employer.
José Hernandez, a Community Organizer with Consumer Directed Personal Assistance Association of New York State (CDPAANYS), believes the bill is well-intentioned, but not well thought out. Lawmakers think that if they pass this bill into law everything will fall into place,” Hernandez said. He asserted that while the City Council members’ intention may be to improve the lives of disabled and aging populations and home care aid workers, their lack of familiarity with the system surrounding home care means such legislation will be at odds with either the city or state trying to provide adequate care for their clients.
Hernandez testified in front of the City Council about how an end to the 24-hour live-in care that was cited in Intro 0175-2022 could lead to disabled people being placed in nursing homes. At 15 years old, Hernandez experienced a level C-5 spinal cord injury. For the first year after his release from the hospital, he received care through two 12-hour split shifts, ensuring continuous care day and night. When Hernandez was 16, a representative from the New York City Human Resources Administration (HRA) came into his home with an unthinkable ultimatum: “Sign paperwork to convert my case to a 24 hour live-in case or go into a nursing home. As a scared teenager, I signed the form and had a live-in case for the next 16 years.”
Hernandez stated that while the bill is meant to be supportive, intentions don’t determine outcomes. “We know our freedom is tied directly to our [home care] workers, Hernandez said. But, while I, and most people with disabilities, believe in the intentions behind the bill, it returns me to the trauma caused by that HRA caseworker 26 years ago. People with disabilities have struggled for many years to justify their existence in society and their desire to live in the community.”
The end of 24-hour live-in home care would render disabled and older New Yorkers who have been authorized 24-hour live-in services without access to that much needed care. “The law would force the abandonment of people with disabilities and older adults, who will have no choice but to be placed into a nursing home,” Hernandez explained.
Much like Intro 0175-2022, Intro 0615-2024 wouldn’t change New York State Medicaid rules. Medicaid wouldn’t cease authorizing 24-hour live-in services for disabled and older people. But if the City Council passes Intro 0615-2024, Hernandez shared that 24-hour care authorization could instead likely result in being institutionalized in a nursing home.
According to Hernandez, the irony of the time limits meant to support home care aides is that many workers could potentially lose money if they can’t earn overtime. Consider this math: Hernandez has his support set up in 12-hour split shifts of five and two days. By the time one of his home care aides have completed four days, they will be earning time-and-a-half for the subsequent hours of work. If each of Hernandez’s workers are limited to only 56 hours of work per week, he would either have to hire an additional worker for one day or request that some of his workers rearrange their whole lives around his schedule (which would be unfair to them).
The disabled community is as invested in the comfort and happiness of home care aides as they are in ours. They see us at our most vulnerable and support us in having an independent life on our own terms. But if Intro 0615-2024 becomes law, many disabled people are at risk of being removed from their homes and communities, losing their independence, and having their choices taken away to fulfill the type of care they were authorized for and need to survive.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.