America: Land of the institutionalized?

Sarah K. Lanzo, Independent Living

April 26, 2019


What can you do when the time comes that you or a family member are facing the possibility of having to move to a nursing home – or already have and would like to depart? Just last year, in a dementia unit of a residential home in Massachusetts, an 87-year old man tried to escape through a third-floor window and fell to his death. Fortunately, outcomes are rarely that tragic; most in institutions just languish fairly quietly until the end of their days. Using numbers from a state "bed census," Western New York Independent Living estimates there are currently 1,429 nursing home beds in Niagara County and about 3,000 in Erie County. That's a lot of potential languishing.

Even if the numbers were not already being swelled from the aging out of the Baby Boom generation, we in the disability field have long known that government practices tend to heavily favor sending those who need rehabilitation to nursing homes. As someone who has long been devoted to helping people with disabilities live independently in their own homes, that's never set well with me.

The real irony of this? The Americans with Disabilities Act of 1990 (ADA) has provisions calling for the states to provide community-based services that serve as an avenue to independence — but they've been falling woefully short.

In its report “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” the Senate HELP (Health, Education, Labor and Pensions) Committee observed this gap, and recommended that Congress strengthen the ADA integration mandate to clarify that states and private insurers cannot interfere with every American’s right to autonomy by denying the need of Long-Term Services and Supports (LTSS) in the community. That's all well and good, but how do we prod them to "get off the dime"?

While it's not a complete solution, the not-for-profits have been making a stab at it. Independent Living of Niagara County is proud to be one of 24 Centers for Independent Living across the Empire State to host an "Open Doors" Transition Center to provide community preparedness education, transition planning, and support for individuals who wish to leave long-term care facilities and return to their communities.

Overseen by the New York Association for Independent Living, transition specialists in Open Doors meet with the individuals, determine their needs and wishes, and coordinate with various entities (managed long-term plan care managers, service providers, etc.) to ensure a successful transition into the community. In 2015, the most recent year the State Department of Health has figures, Open Door (then called Money Follows the Person) enabled 232 people to leave institutions in "the Buffalo Region" (Erie, Niagara, Orleans, Genesee, Wyoming, Cattaraugus and Chautauqua counties). Altogether, these transitions saved the taxpayer between $6.9 million and $17.4 million in the first year. Although we don't have hard numbers, I'm told the quantity of people helped annually has increased since then.

But here's what really "grinds my gears": Truly promising legislation that could help, the Disability Integration Act (DIA), has been bouncing around Congress for a couple years. Just reintroduced in January with brand new bill numbers, S.117 [by our Senator Chuck Schumer], and HR.555, DIA is a bipartisan civil rights bill that ensures people with disabilities have a right to live and receive services in their own homes. It also prevents people with disabilities from being forced into costly institutional settings due to unnecessary government regulations. (A bill with bipartisan support that fights "unnecessary government regulations"? How often does that happen?) The passage of the DIA would offer the Community First Choice Option, balancing the possibility of living at home with institutionalization.

Considering all those nursing home beds in just two counties, nationwide, that’s many thousands of options for freedom that could be created by one bill. Just let your legislators know you like it!


Sarah K. Lanzo is the director of Independent Living of Niagara County, a member of the Western New York Independent Living Inc. family of agencies that serve individuals with disabilities. For more information, call 284-4131, extension 200.