I’ve lived many lives in my 78 years. I used to be born in Puerto Rico and got here to New York Metropolis from the Dominican Republic with my mom in 1960, chasing alternative like so many immigrants earlier than me. I studied molecular biology, lived out West working as a ski teacher, drove vehicles, taught piano, waited tables, and ultimately discovered my manner again dwelling—to town I’ve all the time thought of mine. For the previous 41 years, I’ve lived in the identical condo in Flatbush, creating a life rooted in neighborhood, public service, and independence.
That independence practically vanished after a head-on crash within the Brooklyn Battery Tunnel in 1984. The accidents I sustained modified every little thing. Over time, I went from strolling with a cane to dropping the flexibility to face or stroll in any respect. I misplaced not simply my mobility, however my sense of autonomy. At my lowest level, I felt like I had develop into another person’s property, not accountable for my very own life.
What introduced me again was entry to constant, dependable dwelling care.
Since 2011, I’ve had 24-hour care. I take advantage of a CPAP machine at night time and can’t assemble or take away it by myself. With out somebody there, I might not be secure. That’s not an exaggeration—it’s a reality.
I might not be alive at this time with out the assist of dwelling care aides. That’s the reason I’m deeply alarmed by Intro 303, the New York Metropolis Council invoice referred to as “No More 24.” Whereas its title suggests compassion, the truth is way extra harmful. This invoice would remove 24-hour shifts with out placing something workable of their place. For folks like me—New Yorkers with important disabilities—it creates a spot in care that might have life-or-death penalties.
Supporters of the invoice typically declare that companies can merely change to separate shifts. That’s not true. Businesses can not legally make that change except insurance coverage authorize it. Proper now, they do not. Intro 303 does nothing to deal with this basic barrier. It provides no mechanism to make sure that individuals who want steady care will truly obtain it beneath a special construction.
In different phrases, it takes away one thing that works for many people and replaces it with nothing.
There may be additionally a misunderstanding about what 24-hour care seems to be like in apply. My aide doesn’t work nonstop for twenty-four hours. She follows a schedule just like mine, resting in a separate bed room in the course of the night. In actuality, shetypically works not more than 12 consecutive hours. This association permits me to stay secure in a single day whereas additionally giving my aide time to relaxation. It’s not excellent, however it’s purposeful—and, most significantly, it retains me in my dwelling and out of an establishment.
As a result of make no mistake: with out dependable, steady care, institutionalization turns into the one various for many people.
I’ve fought exhausting to stay a part of the neighborhood. I serve on the board of Disabled in Motion. I’ve labored with the New York Metropolis Board of Elections since 1985, serving to coordinate polling websites and guaranteeing that our democracy capabilities. None of this might be doable with out the assist I obtain at dwelling.
Twenty-four-hour care shouldn’t be about comfort. It’s about dignity. It’s what permits me to reside, not simply exist.
Additionally it is deeply irritating that the voices of individuals most affected by this invoice have been sidelined. Incapacity rights advocates have repeatedly requested to work with Metropolis Council members and labor advocates to discover a resolution that protects each caregivers and care recipients. That collaboration has not occurred in any significant manner.
It ought to.
Caregivers deserve truthful working situations and respect. On that, all of us agree. However insurance policies that ignore the realities of individuals with important disabilities don’t advance justice—they create new hurt. We are able to and should discover a resolution that ensures truthful pay and humane schedules for staff whereas preserving steady, life-sustaining care for individuals who want it.
Intro 303 shouldn’t be that resolution.
New York prides itself on being a metropolis the place everybody belongs. However belonging requires greater than phrases—it requires insurance policies that permit folks to reside safely in their very own houses, in their very own communities.
For me, and for a lot of others, 24-hour care is the distinction between dwelling and merely surviving.
If this invoice passes as written, that distinction might disappear.
Julia Yepez-Macbeth is board member of Disabled in Motion.
