An Update on the #SaveNYSHomeCare Campaign

Dear ADAPT community, State leaders, and our allies: 

We are grateful and excited to announce that we have the backing of the NYS Senate in our #SaveNYSHomeCare campaign, as they included in their one-house budget the Repeal & Restore bill (S.5028A) to repeal the stricter home care eligibility requirements in order to save home care access. On behalf of the entire Downstate New York ADAPT community, we send a big THANK YOU to Senator Rivera and Majority Leader Stewart-Cousins. We thank you for your support of the cause, commitment to securing the future of disabled New Yorkers, and for your deep understanding of the gravity of the issue at hand. 

Even with this fantastic success, our call to action still carries on – there is still more work to do! We urge the Assembly and the Governor’s office to follow the outstanding lead of the Senate and include A5367A/S5028A in the final State Budget. The fate of every New Yorker rests in this decision. 

We want to further thank Assemblymember Gottfried and his team for sponsoring the bill in the Assembly, and for urging Assembly leaders to prioritize this issue. We were disappointed to see that the Assembly and the Governor’s office did not include these bills in their draft budget. After meeting with the Governors Health Budget Team to explain why this bill should have been included in their draft budget, we remain hopeful that our statement was heard. 

We urge Assemblymember Heastie and Governor Hochul to follow the lead of the Senate and REPEAL the eligibility cuts in the final budget! If we don’t repeal the restrictions, the criteria for home care will be MORE RESTRICTIVE than that of NURSING HOMES. The State will be slammed with Olmstead lawsuits and a loss of CFCO funding because home care will no longer be the go-to. Public health will deteriorate, as people will either be left at home to fend for themselves, or end up in a nursing home receiving a lesser quality of care. Medicaid spending will increase exponentially, as institutional care is significantly more expensive. Our people will be forced to live with a profound loss of freedom. Repealing the new eligibility criteria is the ONLY morally and fiscally responsible thing to do.

ADAPT activists have staged a week-long sit-in to stress the urgency of this issue from March 14th to the 21st. Everyday for 6 days, disabled activists and our allies sat outside of either Heastie’s Bronx office, 250 Broadway, or the Governor’s midtown office. 

We met many of Heastie’s wonderful constituents – home care workers, ex-nursing home workers, recipients of home care – all of whom agreed that home care MUST be prioritized and remain available to ALL disabled New Yorkers. We talked to multiple reporters, non-disabled people outside of the home care field who were appalled to learn of these changes, as well as office staff and security that silently cheered us on. 

For over a week we remained outside. We brought each other food and snacks. Gave each other hand warmers for the cold nights and iced coffee for the hot afternoon sun. We helped tape signs to each other’s wheelchairs when the wind began to pick up. Took turns leading chants when the other would get tired or fatigued. We didn’t hesitate to give help when one of us needed assistance zipping up our jackets or getting something out of our purse. This is what the disability community looks like: interdependence, love, and grit. While we fight for the larger community to have access to basic human rights, we fight for each other in the smallest of ways. 

Protesting is about taking up space in a world where no one even wants to look us in the eye, let alone provide us healthcare to keep us alive. It’s about reclaiming power, demanding what we need for our survival. You’re only willing to put your body on the line for a cause when you have no other options, when your community is drowning and the rest of the world recklessly keeps moving on without batting an eye. 

To Majority Leader Stewart-Cousins, we THANK YOU. We continue to ask for your support and hope that you can fight for us in the final budget determination. Please continue to be a champion for home care.

To Speaker Heastie, we are disappointed. We sat outside of your office for days asking to speak to someone, yet were largely ignored, patronized, and continually given the run-around filled with empty promises. We will remember this. It means nothing to say you are in support of the disability community and home care while being uncomfortable with sitting with us to discuss the issue or ignoring us when we are calling out for your assistance in our greatest time of need. We don’t know how else to explain to your office that our people are going to die if the State does not act immediately.

To Governor Hochul, we remain hopeful that you will do the right thing. This is your chance to do better than the previous administration. We remind you that expanding Medicaid access means very little if you impose restrictions to home care once on Medicaid. We are excited to build a relationship with you as well as Kim Hill. Yet, we remind you that if our warnings are not heard, there are many other candidates that expressed interest in this issue that we will remember during election time. Nevertheless, we hope that as the first female Governor in the State of NY, that you will also become a true pioneer for the inclusion of people with disabilities. 

To my dear ADAPT family and our allies – I thank you. I have been organizing with ADAPT for almost two years now, and I have never been prouder of our group. Each of our members bring their distinct skills, passions, story, and interests into ADAPT, allowing us to work together beautifully to organize such an expansive and well-rounded event. It is a privilege to be your friend and work alongside you.

Regardless of the outcome of this year’s budget, we will continue to fight for the future of all New Yorkers. One of the most beautiful aspects (but also one of the greatest ironies) of the disability justice movement is that our work will someday benefit all, even the very people fighting against us. We will all be disabled someday, we all deserve access to services… even those that support or create policy to restrict it. Our leaders just don’t realize yet that we are also fighting for their future health. 

To our State leaders, we will remember your actions in this time of dire crisis in our community. The time to act is NOW. 

In solidarity, 

Nina Bakoyiannis

Downstate NY ADAPT co-coordinator

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