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New York State finalized its 2023 budget this month, concluding months of advocacy to increase spending for intellectual and developmental disability (I/DD) services. Advocates throughout the State took action to tell their representatives what they needed in the budget, and their activism paid off in the form of permanent increases and one-time bonuses for direct support staff. Across the United States, states like California, New Jersey, Florida, and others also increased funding for their Medicaid programs and for I/DD services.

These budgets mark a departure from two decades of austerity. Since the early 2000s, and compounded by the 2008 financial crisis, Medicaid spending per enrollee has trended downward. Several factors account for this, including rising costs from an aging population and substantially reduced federal spending. States must pick up more of the tab as the federal government offers less support, and states often struggle to manage increased costs they have never before been responsible for.

The current picture looks different because the federal government, under both the Trump and Biden administrations, directed an unprecedented amount of healthcare funding to states from 2020 to 2022. This funding was largely a response to the COVID pandemic and the economic crisis it spurred, but the funding was also forced by a loud and growing population of Americans demanding more. More Americans have become involved with political advocacy in the last four years than ever before, either by sending emails, making phone calls, or participating in mass actions.

This has certainly been felt at the state level in New York. State legislators are reporting record numbers of emails from constituents on state budget issues. “Rest assured, I have heard from as many constituents as possible urging more funding for I/DD services.” said Thomas Abinanti, New York State Assemblymember and Chair of the NYS Committee on People with Disabilities. “I am totally with you and fighting as hard as I can to make sure you get what you need.”

Roxanne Persaud, NYS Senator and Chair of the Social Services Committee, also recognized the importance of hearing directly from her constituents. Earlier this month, prior to the budget’s release, Senator Persaud joined YAI staff and self advocates to discuss the future of I/DD services in New York. "Over the years I've had a number of self advocates, particularly from YAI, who have called saying, 'We must increase salaries for DSPs'. This year, we are really fighting for that," she said.

Advocacy for I/DD services was particularly pitched in New York this year, as Governor Kathy Hochul replaced Governor Andrew Cuomo and emphasized her commitment to the healthcare sector. The need for government to support healthcare workers, considering the acute challenges they faced during the COVID pandemic and the ongoing workforce crisis, emboldened advocates to demand more than they were used to.

New York advocates for disability services began 2022 asking for a 5.4% Cost of Living Adjustment (COLA) increase in Medicaid funding; increases to the COLA have not breached 0.5% since 2010. In some years funding even declined. As budget negotiations advanced and it was clear that nothing was guaranteed, advocates revised their demands upward to an 11%

COLA increase. Scott Karolidis, Director of Government Relations for YAI, was particularly motivated to demand more.

“We should always go into negotiations asking for more than we expect, because our starting position will always get negotiated down,” Karolidis said.

True to the nature of negotiations, the final budget landed with the 5.4% COLA increase along with up to $3,000 in one-time bonuses for staff. This increase, an unprecedented victory for I/DD providers, was won thanks to thousands of advocates across New York. More than 1,200 people affiliated with YAI contacted their politicians; it is estimated that more than 6,000 people outside of YAI did the same.

Advocates in California look to mirror this success, continuing to press Governor Gavin Newsom for increased Medicaid funding in a budget with more than $40 billion in surplus revenue. This kind of record surplus is common for states and advocates are smartly pouncing on the chance to fully fund their services.

As some states spin up their advocacy machines for incoming budgets and others prepare for next year, one thing is clear—it has never been more important to engage as many people as possible in political advocacy. There are no special skills required to call or email your local representative and let them know what you need them to do. As politicians decide how to spend increasingly large budgets, advocates must make sure they are in the room, too.