Congress should pursue reforms that protect services for people with Down Syndrome, their support caregivers
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The life expectancy for people with Down syndrome has exponentially increased in the last 30 years – from 25 years in 1983 to well over 60 years today. This is due in large part to advances in quality healthcare and medical innovation coupled with inclusive education and access to meaningful employment opportunities. It is also due to a shift to home and community-based supports, funded by Medicaid and other federal and state entitlement programs, and provided by professional and family caregivers.

The National Down Syndrome Society, the leading human rights organization for all individuals with Down syndrome, believes there are ways to reform Medicaid, save money and produce better outcomes for people with disabilities. In the case of Down syndrome, Medicaid reform should seek to address the gaps and barriers to healthcare that prevent individuals with Down syndrome from experience a high quality of life as they transition from childhood to working adult to senior citizen. This includes access to wellness and prevention services, health and health disparities research, patient-centered care models, increased professional training for healthcare providers, and increased support for caregivers.


In addition, Medicaid is so much more than just healthcare for individuals with Down syndrome. It is relied on for other necessary services – many of them provided by caregivers – like employment supports that enable people with Down syndrome to both attain and maintain gainful employment, and Home and Community-Based Services that allow them to be active and valued community members and much more. Expanding these services could reduce dependency on government support, as well as reduce the cost of long-term supports and services.

Unfortunately, the Senate’s “Better Care Reconciliation Act (BCRA) of 2017,” with its draconian cuts to Medicaid in an effort to shift cost burdens onto the states, threatens to reverse the progress that has been made in improving the overall quality of life for people with Down syndrome. It puts in jeopardy caregiver and other supports that are essential to their living long, healthy and productive lives. And the cuts are coming at a time when individuals with Down syndrome are living longer, and their caregivers are aging as well.

There are an estimated five million direct caregivers in this country, compared to about 708,000 doctors, and the number is expected to increase steadily as the overall population increases in age. According to the Bureau of Labor Statistics, the number of caregivers must grow nearly 26 percent by 2024 to meet the demands of an aging population. These people need and deserve support because they are a key to lowering costs and obtaining better outcomes in the Medicaid program, particularly for people with disabilities.

It is vital that all individuals with disabilities receive a fair shot at leading a life of meaning and purpose. To do so, they need more cost-effective health insurance options and caregiver provided supportive services. They need more public-private solutions, such as the Achieving a Better Life Experience (ABLE) Act, which allows families to save their own funds for long-term healthcare costs and other independent living expenses. NDSS urges Congress to support bipartisan solutions that expand options and opportunities for people with disabilities, and leverage the incredible strength and capacity of their caregivers.

Sara Hart Weir, MS, is the president of the National Down Syndrome Society, based in New York City and Washington, D.C.

The views expressed by this author are their own and are not the views of The Hill.