Downes: Home care eligibility criteria proposal is restriction on freedom

I am just one of thousands of New Yorkers who rely on Medicaid to cover the cost of personal care services in my home. As a woman with cerebral palsy, I require these services to dress, shower and use the bathroomamong other tasks frequently taken for granted. Especially as my parents age and become less able to provide physical care, I am keenly aware that the Medicaid personal care program is quite literally my ticket to freedomwithout it, I would have few long-term options except a costly, isolated nursing home.

I want others with disabilities, including the many New Yorkers who may become disabled in the future, to enjoy the promise of the same ticket to freedom.

But a draconian proposal to create new and greatly restricted home care eligibility criteria threatens to topple that promise.

At present, a New Yorker must require any type of assistance with just 1 of 22 tasks ranging from toileting and transfers to cooking and cleaning to qualify for home care.

Under the new criteria, originally created by former Gov. Cuomo’s 2020 Medicaid Redesign Team II, a New Yorker must require “at least limited assistance with physical maneuvering” for three or more tasks on a list of just seven items. An exception is made for consumers with Alzheimer’s and dementia, who must meet the same threshold for at least two, rather than three of the listed tasks.

The new eligibility standard, which was delayed by the onset of the COVID-19 pandemic, is now set to take effect this summer. With it will come devastating consequences.

Many critical forms of assistance such as supervision, cueing, and set up, will no longer be considered. Further, so-called “nutritional and environmental support functions” including cooking and cleaning, are completely eliminated from the eligibility assessment.

Perhaps most stunningly, the new criteria appear to jeopardize billions in federal matching funds under the Community First Choice Option (CFCO), which forbids the creation of different criteria for services based on diagnosis type.

While my personal support needs would likely still qualify me for care, I fear for my disabled peerspresent and futurewhose lives and liberty will be upended by this narrow-minded approach.

The new criteria for home care are more restrictive than that of a nursing home, a dangerous move in direct defiance of the Olmstead principle, which holds that disabled people have a right to community living. Those denied home care will be forced into a facility or left to languish in the community without adequate assistance, increasing the risk of injuries and hospitalizations.

Ironically, this purported attempt to control long-term care costs will only drive them upward, given that the average nursing home cost in my home region of Long Island is, according to the New York State Partnership for Long Term Care, $176,016 per yearnot including the additional impact institutionalization creates by removing thousands of would-be participants from the local economy.

However disastrous the economic ramifications of the proposal, our primary focus should remain on the human cost for thousands of disabled New Yorkers, whose lives are inherently valuable regardless of their economic output.

For the last four years, advocates have worked to restore New York’s original home care eligibility criteria and ensure broad access to home care. Bill A6346/ S328 would do just that, yet the effort has garnered little attention from the public.

The Medicaid home care program has in recent years been treated as a drain on our tax dollars. I implore you to instead treat it as a long-term investment with rich returnshealthy, interdependent lives in the community for people like me, and yes, maybe one day, people like you.

Tell your representatives to restore home care accessbecause disabled New Yorkers are neither numbers nor political bargaining chips. We are people, whose full and worthy lives hang in the balance.

 

Kathleen Downes is a licensed social worker. She also blogs about her life with cerebral palsy at The Squeaky Wheelchair.

Reprinted with permission from Able News at The Viscardi Center.

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