AHRC New York City has fought for the civil rights of people with intellectual and developmental disabilities and their families for over 70 years.

The fight continues and You Can Help.

The resources below will help you to understand today’s policy initiatives, and provide resources you can use to help make a better world for people with disabilities and their families. Included below are our advocacy initiatives at the local, state, and federal levels.

2020-2021 AHRC New York City Advocacy Priorities

The Issue:

  • NYS relies on the voluntary sector to provide vital services to people with I/DD and their families but has failed to recognize the need to sustain these providers  with even minimal increases in funding to cover the rising cost of doing business
  • Many providers are becoming financially distressed, jeopardizing the quality of services they provide and in turn the wellbeing of a vulnerable population.
  • Although BFair2DirectCare is important and deserving of support, funds for this initiative do not cover the cost increases providers face for all other aspects of their service delivery.

Issue Overview

The intellectual and developmental disability (I/DD) field began as a partnership between government, families and the newly created non-profit provider sector – all wanting to do what was right after the signing of the Willowbrook Consent Decree in 1975.   The sector has grown over the years, working hand in hand with government, to support people with I/DD who would otherwise be left without any supports. While AHRC NYC and other similar mission-driven organizations made commitments to serve the most vulnerable of New York State’s population, a commitment that was once shared by the state, the rising costs of doing business are making the viability of necessary programs difficult to maintain. Since the I/DD field is almost exclusively reliant and supported by government funding, increases in fixed costs that are matched with increased government funding make sustainability difficult.

There are approximately 140,000 individuals in New York State who have intellectual and developmental disabilities (I/DD) and are supported by NYS OPWDD. Voluntary provider organizations provide services and supports to these individuals, and offer a variety of programs tailored to meet the wide range of needs and abilities of those with I/DD in the most efficient and cost-effective way. Today, AHRC New York City alone provides services to over 15,000 individuals with I/DD every year and has a staff of 5,000, spread across 113 facilities, in all five boroughs.

Many agencies have been forced to close, limit the number of program offerings, or severely reduce the number of individuals they can support. The individuals being supported require care and specialized attention that can only be provided by organizations such as AHRC NYC, with specialized expertise, knowledge and experience.

In 2006, New York State made a cost of living adjustment (COLA) increase permanent by law, but this has been deferred by the Executive since 2010. Prior to the deferral, Medicaid funded OPWDD supports and services received yearly increases to cover the rising costs of providing services, called “Medicaid Trends” similar to a COLA for non-Medicaid expenses. In 2010, a 2.08% COLA/Medicaid trend was given to both state and nonprofit operated programs. Since then, with the exception of a 0.2% increase given in 2017, nonprofit OPWDD providers have been denied any COLA to support agency operations.  Recent OPWDD budgets have included zero dollars to account for inflation, pay for the rising costs of workers’ compensation, liability insurance, employee health care costs, rising rents, and other fixed costs involved in providing services. Hundreds of millions of dollars have been saved by NYS as a result of these COLA deferrals.

An absence of these trends has forced many providers to operate in the red, have very limited cash-on-hand, and in some instances, forced them to close their operations. The poor fiscal health combined with the pressure for providers to start their transition to managed care has placed organizations in a perilous and increasingly unstable position. It has placed the state’s most vulnerable citizens in peril of not receiving the services to which they are entitled, deserve and need. Without these services, they will languish at home or become wards of the state.

AHRC NYC Position:

Include the 3% Human Services Sustainability Trend for the next 5 fiscal years.