(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.


FOR IMMEDIATE RELEASE:  Monday, December 14, 2020

(Albany, NY) The COVID-19 pandemic has illuminated the problems that have existed in New York's nursing homes for years, including poor infection control. A new statewide advertising, public relations, and grassroots campaign has been launched to make sure that New Yorkers are aware that there are several options for independent living, rather than nursing homes and group settings.

"New Yorkers need to know that there are a variety of supports and services that can help them live at home. We've witnessed during the pandemic how dangerous nursing homes can be, and there is no reason people need to end up in a nursing home," said Lindsay Miller, executive director of the New York Association on Independent Living (NYAIL).

The multi-media campaign will include a statewide digital ad buy centered around a theme of "Living at home, not in a home." The campaign will also include an aggressive grassroots marketing strategy engaging NYAIL members, people with disabilities and their families from around the state. The total cost of the campaign is confidential but is substantial.

"New York State shouldn't be wasting money – especially in this extremely difficult budget year – to prop up failed nursing homes, congregate living settings, and other institutions where safety is an issue," said Miller. "Now is the time to transform our long-term care system and phase out nursing homes as we know them today. Some of our public officials are saying that one of the lessons learned from COVID is that we need to put more resources into them.  That is a completely wrong conclusion – it would not make these settings safer, or more homelike, and it would take resources away from necessary investments into community-based options."

Over the last 20 years, the work of New York's Independent Living Centers to transition and divert people with disabilities from institutional placements and into their own homes has saved New York State more than $2.5 billion, according to the New York State Education Department ACCES-VR.

"We should be investing in choices that keep New Yorkers independent and safe; it's the right thing to do," said Miller. "These are scary times for all of us and we need to make better choices for the sake of our family members and neighbors."