New York State’s final $237 billion budget fails to meet the needs of New Yorkers with disabilities, their families, the workforce that supports them and the nonprofit provider agencies.
Awareness days and months serve as important reminders of the challenges facing people with intellectual and developmental disabilities (IDD) and their families. Yet, these efforts, combined with the voices of advocates urging support and resources once again went unheard.
Recently, within the halls of the Legislative Office Building, voices rose in unison. Hundreds of people with IDD, their families, and the dedicated professionals who support them gathered to demand recognition and additional funding.
Direct Support Professionals (DSPs) are the unsung heroes of our community, providing unwavering support to people with IDD. However, their contributions are often undervalued economically, mirroring broader societal attitudes toward discrimination. This undervaluation extends to the nonprofits that employ and support frontline staff.
The governor’s budget offered a mere 1.5% cost-of-living-adjustment (COLA), while the state Senate and Assembly proposed a higher adjustment of 3.2%, albeit with significant restrictions on fund usage. During last-minute backroom negotiations, it was watered down even further. The 3.2% dropped to an effective 2.84% COLA and a requirement of a 1.7% wage increase for frontline staff.
It’s important to recognize that the COLA reflects trends in Medicaid rates paid to agencies where DSPs work. However, over the past decade, there has been a devastating lack of investment in the system of care delivered through nonprofit agencies. We’ve seen investments totaling only 10%, leaving us 20% behind inflation.
This discrepancy is unsustainable. Even without rate trends, nonprofits did the right thing, giving their staff wage increases whenever they could afford it. A couple of years ago, when a 5.4% COLA was (finally) provided, nonprofit agencies gave, on average, a 7.2% increase to their frontline staff.
That’s what I call a commitment to the mission.
Agencies cannot address this issue alone. Government must also commit to the mission.
Going forward, it’s crucial for policymakers to enact legislation mandating fair wages for DSPs and the frontline workforce, ensuring that their contributions are duly recognized and compensated. This includes implementing a $4,000 Direct Support Wage Enhancement, which is not provided in the final budget passed Saturday afternoon.
Agencies urgently need rate increases that begin to catch up with inflation, allowing for competitive compensation and the ability to cover essential expenses such as healthcare premiums, rent, and transportation. Human resources team members, IT professionals, finance, and maintenance staff, among others, also enable nonprofits to realize their mission.
Inadequate funding continues to hobble the work of these vital organizations with direct, negative impacts on access to services and supports for people with IDD. There are currently lengthy delays in attaining eligibility for needed services.
Once eligibility is established, it often takes many months to obtain the resources that help people find a place to live, obtain a job, learn new skills to promote community inclusion and, very importantly, allow people with complex needs to receive, well-coordinated care to transition from expensive settings, like hospitals, nursing homes and other intensive treatment units.
Policymakers must acknowledge the critical role of nonprofit provider agencies in delivering supports to people with disabilities. These organizations play an integral part in the lives of countless individuals and families, providing vital assistance and fostering community inclusion.
Despite their invaluable contributions, nonprofit providers continue to be overlooked and underfunded. To ensure the sustainability and effectiveness of these organizations, the state must prioritize adequate funding and support mechanisms. This includes fair compensation for staff and, in turn, funding so nonprofits can promote investment in training, professional development, and workplace accommodations necessary for attracting and retaining staff.
By investing in the nonprofit sector, we invest in the well-being and independence of people with IDD. We acknowledge their inherent dignity and worth, and we affirm our commitment to creating a more inclusive and equitable society. This is the mission.
By undervaluing the work of these nonprofits, we are devaluing the people who rely on that support. New York must reaffirm its commitment to people with IDD by investing in the system of support they so desperately need and deserve.
Former U.S. Sen. Tom Harkin, a stalwart advocate for the rights of people with disabilities, aptly stated that the “economic undervaluing of DSPs reflects a larger societal disregard for the rights and dignity of people with disabilities. It is imperative that we recognize and rectify this injustice.”
We can and must do better.
Damiani is the CEO of AHRC New York City, the state’s largest provider of IDD services.