Right now, New York City is considering a proposal known as Intro. 303, a measure that would effectively limit 24-hour home care shifts to 12 hours by penalizing agencies that continue to provide live-in care.
The intention is to address real and urgent concerns about how home care workers are treated and compensated. Those concerns are valid. Workers deserve fair pay, full transparency, and protection.
But here is the problem.
Intro. 303 does not align with how care is authorized, funded, or delivered through Medicaid at the state level. New York City does not control those authorizations or the funding structure required to support a shift like this.
And that gap is not theoretical.
For more than 13,000 New Yorkers who rely on 24-hour home care, this proposal determines whether they can remain in their homes or be pushed into institutions.
That is not policy nuance.
That is survival.
Before policy debates, before proposals, before systems weigh cost and compliance, there are real lives held together by relationships most people will never fully understand.
Mine is one of them.
In a world reshaped by a pandemic, where uncertainty became routine and survival felt negotiated day by day, my life shifted in a way I did not see coming. It happened just three days before the one-year mark of a crisis that had already taken so much.
At that time, hospitals had become places of fear. We all knew the stories. People went in and were never seen again by those who loved them.
When my personal assistant, Diaby, was admitted to the hospital, I was not just concerned.
I was terrified.
I went home and called. He was stable. He was on oxygen. The next morning, I called again. Still stable. Two days later, he was discharged.
It was the one-year anniversary of a pandemic that shut down the world.
But this is not just a story about that moment.
It is about a relationship that began long before it.
Diaby has been with me since 1992, when I had not even been injured a year and a half. From the very beginning, he was there not just to assist, but to help me rebuild a life.
He has sat beside me in college classrooms. He has been there through every milestone, including all three of my college graduations as I earned a bachelor’s degree and two master’s degrees. He has been present through the growth, the setbacks, the victories, and the everyday moments in between.
At this point, he is family in every way that biological ties could only imagine.
Years later, the effects of long COVID are still present for him. Healing has not been linear. The continued sleeping spells are a constant reminder that the impact never fully left.
But Diaby is here.
And that, in itself, is nothing short of a miracle.
I pray for his continued healing every day. And I carry a responsibility now to support him as fully as he has supported me throughout my adult life.
Because what people often fail to understand is this: the relationship between a personal assistant and a consumer is not transactional. It is not just about tasks, schedules, or services rendered.
It is built on trust. On dignity. On mutual reliance. On knowing that, at any given moment, one life is quite literally in the hands of another.
It is a relationship like no other.
And yet, our policies continue to treat it as if it were.
Intro. 303, as currently structured, attempts to solve one injustice by creating another.
On paper, limiting shifts may sound like reform. In practice, without state alignment and funding, it creates a system where authorized care cannot be delivered as required.
And when care cannot be delivered, people do not simply adjust.
They fall through the cracks.
The consequences are predictable.
Gaps in care become crises.
Crises lead to hospitalizations.
And hospitalizations lead to nursing homes.
This is how institutionalization happens.
Not by choice.
By policy failure.
And the financial argument only deepens the contradiction. In New York State, Medicaid spending on nursing home care exceeds $8 billion annually, far more costly than providing care in the community. Yet policies like this continue to push people away from cost-effective, community-based solutions and toward institutions that are more expensive and more isolating.
Without a coordinated state solution and the necessary funding, estimated at roughly $460 million to appropriately support this workforce, this proposal does not strengthen care.
It destabilizes it.
What is most important to understand right now is that this proposal is still in process. As of now, Intro. 303 is not aging out of the current legislative session.
There is still time.
Time for advocates, organizations, and communities to come together.
Time to sign on to letters opposing this approach.
Time to ensure that policy reflects the lived realities of the people it will impact most.
Because what is most troubling is that proposals like Intro. 303 create a false divide between home care workers and people with disabilities, as if our needs are in competition.
They are not.
We are interdependent.
When workers are unsupported, consumers suffer. When consumers lose services, workers lose jobs. When the system fails both, institutions fill the void.
We have seen this before.
We should not accept it again.
There are real solutions available. Ones that protect workers without dismantling care. Enforcing protections against retaliation. Ensuring full reporting and payment of all hours worked. Requiring agencies to provide documentation that supports appropriate adjustments in care authorization. And most importantly, aligning city action with state authority and funding so reforms do not collapse under their own weight.
But that requires something our system too often avoids: designing policy with the people most impacted at the center.
The relationship between a personal assistant and a consumer cannot be reduced to a line item in a budget or a compliance issue in legislation.
It is a lifeline.
And if we continue to ignore that truth, we will not just fail policy.
We will fail people.
And when policy fails people like this, what we are really deciding is who gets to live at home, and who gets left behind.
Marcus Johnson, CRC-CVE, LMHC is co-leader of the Civics League for Disability Rights, an independent, volunteer-led group of New Yorkers with disabilities advocating for systemic change in healthcare, access, and disability-led policy.
Contact: civicsleague@gmail.com
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.