New York State is at a crossroads when it comes to caring for individuals with intellectual and/or developmental disabilities (I/DD). Government officials have a choice to continue divesting from the system leading to irreparable harm for our most vulnerable citizens or they can right the ship by maintaining the investment in the organizations providing support to the majority of individuals in the state with I/DD.
One such group of organizations is Care Coordinated Organization/Health Homes – entities created by the state in 2018 to provide critical and essential services to people with I/DD. Now, less than three years later, these essential organizations are facing another 23% cut in Governor Cuomo’s Executive Budget plan, which, if enacted, would total almost 40% cut over a period of just over a year. If this cut moves forward, it would result in the dismantling of care coordination and advocacy for 110,000 people with intellectual and/or developmental disabilities.
Many New Yorkers with intellectual and/or developmental disabilities need help accessing basic human needs – food, housing, medicine, employment, community resources, and transportation. We partner with these individuals and their families to help them through life’s challenges.
Many people with I/DD have incredibly complex medical, behavioral, and social needs that require high-quality, specialized care. This is where Care Coordinated Organization/Health Homes come in and play a key role. We provide support ranging from navigating and coordinating medical and behavioral health services, and long-term care services.
Cutting Care Coordinated Organization/Health Homes funding will lead to increased and preventable hospitalizations, institutionalization, and homelessness. It is unconscionable to implement a cut to services to a population that face up to five times greater risk of dying from COVID-19 due to their comorbidities and chronic health conditions.
The fact is, the New York State Office for People with Developmental Disabilities is not keeping the promise that Governor Cuomo made a decade ago when he promised “care management for all.” Not only did it take seven years for the Care Coordinated Organization program to be developed, now the state is preparing a knock-out blow by obliterating our funding. The dissonance in the state’s messaging versus its actions from the Office for People with Developmental Disabilities’ hidden funding reduction action is especially dangerous at the height of an unprecedented pandemic.
As Care Coordinated Organization/Health Homes for individuals with intellectual and/or developmental disabilities we are more than just care coordinators. We’re advocates. Oftentimes, we are the literal lifeline. Many New Yorkers with intellectual and/or developmental disabilities do not have family to care for them or are unable to advocate for themselves. Because of this, they're more likely to have their rights violated; lose access to benefits such as Medicaid and lose access to services and supports to meet their needs. They should not be left to navigate the complicated Office for People with Developmental Disabilities, public benefit, and health-care system bureaucracies on their own.
So, what can be done? We are not asking for additional funding, but begging the state to not gut the care coordination system that was promised long ago and so many now rely on. We are asking that Governor Cuomo correct this wrong by using a portion of the additional $2 billion in enhanced Federal Medicaid funding already committed to New York State by President Biden after the governor’s executive budget was released.
New York simply cannot ignore the vulnerable human beings in our care. Whether New York State tears up their safety net or not; they exist, they love, they hurt, and they need care and support now more than ever. We call on New York State to restore the funding and not to move forward with the proposed cuts to ensure the Care Coordinated Organization/Health Homes model of care is intact in order to deliver the critical care coordination and advocacy services that New Yorkers with intellectual and/or developmental disabilities deserve and have come to depend on.
Jim Moran is the CEO of Care Design New York.