Let’s Creatively Use Available Federal Funds to Fix This

Statement from New York Association for Independent Living (NYAIL) Executive Director Lindsay Miller:

Over the past year, more than 15,000 people tragically died in nursing homes and other long-term care facilities due to COVID-19 and problems inherent with these institutions in keeping residents safe. This year’s state budget provided an opportunity to address this crisis and ensure it does not happen again by investing in home and community-based services. Nobody should be stuck in a nursing home who does not want to be there. Unfortunately, the final state budget turns its back on people with disabilities and seniors by maintaining the status quo when it comes to inadequately funding the programs we need to live at home, not in a home. Most astounding is the state’s unwillingness to fund Fair Pay for Home Care amidst a growing home care crisis.

New York’s Independent Living movement, along with many others, advocate for Fair Pay for Home Care to increase wages for home care workers to 150% of a region’s minimum wage. Independent Living Centers help prevent people from going into nursing homes, as well as assisting them to leave if they express an interest in moving back home. However, this work is now extremely difficult as people who are ready to leave a nursing home with housing and other services in place are not able to do so because home care workers are not available. Wages in other sectors like fast-food restaurants have increased while wages for home care workers have remained stagnant despite the vital nature and difficulty of the work. These essential workers kept thousands of New Yorkers safe and independent throughout the pandemic, but the state budget failed to ensure they are paid a living wage.

The state neglected several other opportunities to invest in keeping people safe and in their own homes, including: The Access to Home program, to provide home access modifications to allow individual to stay in their own homes and out of deadly institutions; Independent Living Centers, which provide essential advocacy and supports to help keep people in their own homes; and the Long Term Care Ombudsman Program, which serves as a resource and advocate for individuals living in nursing homes.

Independent Living Centers are seeing more and more people unable to leave institutions solely because they cannot get home care due to the aide shortage.  We expect this crisis will only worsen this summer when fast food workers earn $2.50 an hour more than most home care workers. There is more than $1.6 billion in federal funds available for home and community-based services to be distributed pursuant to a plan developed by the NYS Health Department. The state must use these resources to finance the Fair Pay for Home Care initiative so that there is an adequate workforce to keep people in their homes and out of dangerous institutions.



(ALBANY, N.Y.)  More than 70 organizations have endorsed 12 vital policy recommendations to reorient New York’s system of long-term care from congregate facilities to community-based services, supports, and housing for older adults and people with disabilities.  The petition, with specific recommendations on needed changes, was sent today to Governor Andrew Cuomo and various executive branch administrators; Speaker Carl Heastie; Majority Leader Andrea Stewart-Cousins; and the Assembly and Senate Committees on Aging, Health, and Mental Hygiene.

The petition and recommendations grew out of a statewide coalition effort to respond to ongoing and inherent systemic concerns embodied in congregate care, such as infection control and prevention deficiencies, unsafe levels of staffing, and now widespread illness and death due to, most recently, COVID-19.  The petition emphasizes the promise of the Supreme Court’s Olmstead decision holding that people with disabilities who can and wish to live in the community must not live in segregated institutional settings, and that the choice of where to live and receive needed supports should be recognized as a basic human right for all New Yorkers.

“Reacting to the latest tragedy in congregate facilities with more money isn’t solving the root causes of the problems faced in long-term care. We’ve been doing that for decades,” said Lindsay Heckler from The Center for Elder Law & Justice.

The recommendations focus on eliminating policies that create an institutional bias and increase barriers to community living, while also expanding community-based services, supports and housing opportunities for New Yorkers who are disabled and/or are older adults. They aim to construct a framework to build a better overall system of care by leveraging existing programs and policies, instead of trying to build perfect institutions, which has been tried and failed over many decades in New York.

Bryan O'Malley, executive director of the Consumer Directed Personal Assistance Association of New York State, said, "Putting more money into nursing homes in response to the devastation of COVID-19 would be akin to having watched the Hindenburg disaster and doubling down on dirigibles. This petition calls for a future that reimagines long-term supports and services for seniors and people with disabilities to build back better, rather than repeating the mistakes of the past."

The full petition with recommendations:


FOR IMMEDIATE RELEASE: Thursday, January 14, 2021

(Albany, NY)  Reimagining New York’s long-term care system is essential to the health and safety of New York, but it was not addressed by Gov. Andrew Cuomo this week in his four-part State of the State address. This is another missed opportunity to fix an outdated system that has taken the lives of thousands and keeps many more in jeopardy, according to the New York Association on Independent Living (NYAIL). NYAIL remains hopeful that the Governor’s Executive Budget, due next week on Tuesday, Jan. 19, contains necessary reforms or it too will be a missed opportunity.

In his State of the State address the governor asked, "Do you remember last spring?” Advocates who have demanded changes to rebuild New York’s long-term care system since before the COVID pandemic remember it very clearly. What has been said for years about institutional settings being unable to deliver individualized, quality, and safe care became abundantly more obvious with the exponential growth of fatalities from the COVID virus, an issue that has transcended regular news stories about neglect and abuse.

“To date, 8,100 New Yorkers lost their lives to this pandemic while living in nursing facilities,” said Lindsay Miller, executive director of NYAIL. “Despite the fact that the New York State Department of Health has refused to release the data, we know that many more have died in hospitals after contracting COVID-19 in nursing facilities.”

With the COVID-19 pandemic putting a spotlight on the dangers of living in a nursing home or other institution, NYAIL launched a multi-media grassroots campaign late in 2020 to make sure New Yorkers know there are better options available that promote independent living. The campaign – entitled “Living at home, not in a home” – aims to raise awareness among community members and state leaders about the community options available to seniors and people with disabilities in place of nursing homes and group homes. The statewide effort engages 32 NYAIL member organizations across the state.

“A great deal of attention is being paid to the rollout of a vaccine, but a vaccine does not cure the dangers of living in institutions. A commitment of resources to home and community-based care goes further in reimagining a long-term care system that will meet the needs of people and protect them now and long into the future,” said Miller. “And yet the governor did not even mention a plan to address these issues in his State of the State address.”

“Many people believe that dumping more money into nursing homes is the best way to address the problems of people dying in these facilities, but we know this is not the solution,” said NYAIL Board Chair Aileen Martin of the Northern Regional Center for Independent Living in Watertown. “Real reform and a recognition that these facilities are not safe are vital to solving these issues.”

“People should be able to live in the community with proper supports at all stages of life. Investing in a system that is safe for everyone regardless of wealth, race, disability, or other status would be a significant movement toward safe and equitable care. We urge Gov. Cuomo and other state officials to reimagine and invest in a system that allows people to live with those they love, in their communities and homes. That should start with specific reforms in this year’s Executive Budget next week,” said Miller.