April 5, 2024

The Budget Is Late. It's Snowing in April. Advocates are On Fire!

The march towards April typically brings surprises, but this year, April Fools is extending a bit longer than we would prefer, and so far, it’s giving us the cold shoulder.

Yet, despite the harsh weather forecast, advocates from across the state came to Albany in droves to protest the inflexible cost-of-living adjustment (COLA) language found in the Senate and Assembly’s one-house budget bills, and raise their voices to support a true 3.2% COLA and $4,000 Direct Support Wage Enhancement (DSWE). Together, these two investments would support New Yorkers with intellectual and developmental disabilities and our dedicated Direct Support staff living and working in communities across the state.

The Budget

Governor Hochul issued a second budget deadline extender, which will push the deadline to at least April 8. Conversations are continuing, including the staunch request for a flexible 3.2% COLA and DSWE.

We Rallied Well!

Hundreds of advocates rallied in The Well of the Legislative Office Building (LOB) on Wednesday, April 3, despite the prospect of the winter chill in spring. Thank you for all who joined. We heard from legislators who get it and DSPs and family members who live it.

View photos from the rally here. If you weren't able to be there, send state leaders a message right now!

Only 1,800 people have participated in this final push of our one-click campaign so far. Let’s get to 3,000 in the next week! Be loud and proud! 

The Arc New York Joins with Hundreds to Send a Message

The Arc New York, along with New York Disability Advocates (NYDA) and over 180 organizations supporting New Yorkers with I/DD sent a letter to decision makers across New York. The letter details the intricacies involved with final budget negotiations and our ardent request, “…we advocate for a genuine 3.2% COLA in the SFY25 Enacted Budget. This adjustment should cover all service delivery expenses, including wages for both direct care and clinical staff, alongside a $4,000 DSWE for Direct Support Professionals. This comprehensive approach will ensure our ability to continue delivering high-quality care and support to our communities.”

People need food, transportation, housing, and the basics of life. That is what we are fighting for!

David and Betsy Irish Share their Story On News 1

This week Spectrum News 1 shared the story of Dave and Betsy Irish and how Direct Support Professionals integrate into their lives. David Irish notes, “The problem is that the not-for-profit service providers like the Arc of Monroe have not been getting adequate funding from the state of New York for a long, long time…”



David is a longtime volunteer advisor with The Arc. He currently serves as Chair of The Arc New York’s Joint Committee on Advocacy, and is a past Board of Governor and Regional Vice President for The Arc of Monroe and the western region of New York. Watch the powerful piece here.

Syracuse Op-Ed Calls for Investment in I/DD Services

Arc of Onondaga Executive Director Ellen Gutmaker and AccessCNY Executive Director Paul Joslyn penned a joint Op-Ed for Syracuse.com, sharing the realities of our current crisis and the need for true investment in the services and supports New Yorkers with I/DD rely on.

"State leaders have clearly heard our call for urgent and meaningful investment in our workforce," they said. "The proposals they have put forth do not adequately support the full needs of New Yorkers with I/DD, or sustain the system of care and support New York has committed to providing. They still have the opportunity to better meet the full and complex needs of New Yorkers with I/DD. To do so, they must include the Direct Support Wage Enhancement and a true 3.2% COLA investment in essential services and supports."

CBS Reports on Institutionalization across the US

In 1999, the Supreme Court ruled the unjustified institutionalization of people with disabilities constitutes discrimination. But in recent years, a number of lawsuits across the country have exposed unnecessary institutionalization in several states.

CBS Reports went to Illinois, which has one of the highest rates of institutionalization, to explore the challenges families across the country face keeping their developmentally disabled loved ones at home. Watch the report here.

This story is difficult to watch. However, it's important to watch. We share it because this is why we advocate, and why we need to educate.

Despite what we have accomplished in New York, institutionalization remains the status quo in many state. This is a moment to pause and reflect that our work is ongoing. We will diligently fight to ensure that we do not return to institutions and fight for the people across the nation who need our support.

OMIG Reform

Advocates held a recent press conference as part of the ongoing push for a meaningful reform of the NYS Office of the Medicaid Inspector General (OMIG) audit practices of healthcare agencies that provide essential services to New Yorkers with Medicaid insurance.

New OMIG reform bills (S.5329D / A.6813), introduced by Harckham and Paulin, seek to address these practices. This legislation addresses audits that take time and resources away from healthcare and mental hygiene agencies providing essential services to New Yorkers with Medicaid insurance, while preserving the Office's oversight.

As noted in our June 2, 2023 update, we have and will continue to be a signatory to the letter of support on this key reform.

In the press release, The Arc New York CEO Erik Geizer said, “OMIG serves a critical role in combating fraud and abuse in the service system. We share OMIG’s goals, both in our mission to deliver high-quality services and supports and our commitment to being fiscally responsible with the Medicaid funding that makes those services possible. These common sense reforms will uphold the OMIG’s authority, but reduce the unnecessary burden on providers, which currently impede our partnership with OMIG and our ability to focus on quality care.”

You can view coverage in Crains, Politico, the River Journal and the Rockland Report.