Two people in wheelchairs with bright orange shirts that say #SAVECDPA and two people standing behind them, one is holding a sign with the same language

Advocates for people with disabilities rallied in Albany February 11 in support of New York's Consumer Directed Personal Assistance Program (CDPA/P). | Contributed photo.

Reporter's notebook: The New York State shift to long-term care

Research and information on long term care in NYS
Because you should begin at the beginning. And the beginning began with people, as they looked for ways to humanely care for the chronically ill, disabled and elderly.

To read about the CDPAP and why people in New York State are afraid they might lose access to it, click here.

Long Term Care before 1992

If you had a chronic medical condition that left you in need of significant help, you were placed in an institution (and horror stories emerged over time about conditions there). Or your famBecause you should begin at the beginning. And the beginning began with people, as they looked for ways to humanely care for the chronically ill, disabled and elderly.y did the best it could, caring for you at home. Those were the days when middle-class and wealthy mothers were at home, for the most part, so they were designated caregivers for ill relatives as well as children.

Beyond asylums and family care, though, the story of people with disabilities and poverty-stricken elderly in the U.S. is the story of Medicaid.

In its report “Medicaid at 50,” the Kaiser Family Foundation  notes that when Medicaid began in 1966, only the people with disabilities who were impoverished could receive it, and only if they were receiving cash benefits already.

The 1970s

The Social Security Amendments of 1972 created the SSI program for people with disabilities, replacing state programs for the ABD (aged, blind and disabled.) Now the states had to meet national standards instead of setting their own:

From 1971 on, federal Medicaid funds were gradually expanded to pay for nursing home and other institutional care. That had been state-funded or paid for by the family before.

The 1980s

In 1982, Medicaid was “expanded to children with significant disabilities,” said the report. Normally, Medicaid would have paid for their care only if they were institutionalized, but the reform meant the children could remain at home and the family could get financial help.

Expanding Medicaid to workers

“In the late 1990s, Congress established new options permitting states to provide Medicaid eligibility for working individuals with disabilities with higher earnings and resources up to state-defined limits and to charge income-related premiums and cost-sharing.” Kaiser notes that these reforms were due to problems with job-based health insurance, which might not have covered the care of a disabled person, and might have hired a healthier person over a disabled one to save money.

The Olmstead decision

Another watershed in the evolution of Medicaid’s role for people with disabilities,” says the KFF Medicaid report, “was the Supreme Court’s landmark decision in Olmstead v. L.C. in 1999. The Court ruled that unjustified institutionalization of individuals with disabilities is illegal discrimination under the Americans with Disabilities Act, a decision leading states to expand access to community-based services.”

Medicaid, because of its role in long term care, seemed tailor-made to assume responsibility, plus it gave states the freedom to design their own programs—which New York State did, creating an environment that supported people with disabilities.

“New York State was at the forefront of starting the first pilot programs for Consumer Directed Personal Assistance Service in the early 1990’s,” Independent Living/Independent Home Care COO Shannon Zawiski and manager Babi Satzman wrote in an email to me.  “ Fast forward to 2012 and Governor Andrew Cuomo put his full support toward the 527 U.S. 581 Olmstead Act (1999) by issuing his own Executive Order 84 in November of 2012. The Olmstead Act provides people with disabilities the right to obtain the necessary support and services to remain in the most integrated setting appropriate for their needs.  In other words, remain at home in their own community.”

Independent Living/Independent Home Care are fiscal intermediaries in Newburgh. They cover Sullivan County.



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