Supporting disabled means supporting Medicaid

Two weeks ago, the Livingston County Board of Supervisors declared March "Developmental Disabilities Awareness Month," urging residents to "give full support to efforts towards enabling people with developmental disabilities to live full and productive lives of inclusion in our communities." This Monday, a bill was released in Congress that would cap Medicaid spending. If Livingston County truly wants to support people with developmental disabilities, we need to support our current Medicaid program.

My sister Sherry was born with Down's syndrome in 1957. At that time my parents were told to send her away to an institution because she would never even be able to feed herself. However, they knew she belonged at home with her family and they believed she could achieve more than they were told was possible. Today, with the help of the staff at her group home, Sherry works, volunteers, has many friends, and has a full life. Her helpers respect her and are experts at helping her navigate her limitations.

The Medicaid program is one of the foundations of Sherry's full life. My parents knew they could not provide the best life possible for Sherry without a community. They did their part to form that community by creating a chapter of the Arc in Steuben County that still exists and has helped thousands of people over the years. And over the years, Americans recognized the need to provide community support to families like ours by making people with disabilities eligible for our public health insurance programs, Medicaid and Medicare. The largest proportion of spending in Medicaid today (42 percent) is used to provide services to people with disabilities.

Today, newborns with Down's syndrome receive immediate access to Medicaid in New York. Medicaid covers gaps for families with employer-sponsored coverage, which often does not cover early interventions that greatly improve childrens' outcomes and independence later in life. For adults, Medicaid is used to cover gaps between their broader support needs and their health needs, which are covered by Medicare. Most importantly, Medicare does not pay for long-term services and supports, like Sherry's helpers. My family did as much as we could on our own and planned carefully for Sherry's financial future - but it's the Medicaid program that makes so much of Sherry's full life today possible.

One of the arguments for capping Medicaid spending is that states like New York spend too much on Medicaid. But what we buy with that money is a meaningful life for people like my sister. We buy peace of mind for people like my parents, who knew that their beloved daughter would not be sent away from the home she knows and loves even after they were gone.

Proposals to cap Medicaid cannot be implemented without deep cuts to the services available to people like Sherry. Proponents say that the caps will be flexible enough to provide larger budgets for people with disabilities. But the goal is nonetheless to cut Medicaid spending deeply, and there is no way to do that without reducing spending in the largest category.

When you hear leaders talk about Medicaid as a failed program in need of drastic changes, please remember what it does for my family. For us, Medicaid is an essential gift.

Kathy Rose

Dansville