Global Down Syndrome Foundation Position on Proposed Changes to Medicaid Program

Many people with Down syndrome receive health insurance coverage and important health care services through Medicaid. They often have complex medical needs and insurance coverage is critically important. As Congress and the Trump administration consider various approaches for modifying or replacing the Affordable Care Act (ACA, or “Obamacare”), the Global Down Syndrome Foundation (Global) urges Congress and the White House to ensure that persons with Down syndrome continue to have access to quality and affordable healthcare services under Medicaid.

Medicaid is a shared federal-state program that provides insurance coverage for low income individuals. Under the ACA, Medicaid coverage was expanded and states were given the opportunity to extend coverage to include individuals with incomes at or below 138% of the poverty line. States that agreed to the expansion were provided more generous federal funding that covered almost the entire cost of the expansion. Ultimately, 31 states and the District of Columbia adopted Medicaid expansion.

Although a majority of Medicaid beneficiary coverage is based on income eligibility, the program also offers coverage for many people with disabilities such as Down syndrome. For example, individuals who qualify for Supplemental Security Income (SSI) benefits under Social Security are also eligible for Medicaid coverage. Medicaid coverage includes essential medical services including home and community-based services. Eligibility for disability-related Medicaid coverage is based on preexisting rules and was not impacted by changes to the ACA eligibility and enrollment requirements.

A number of potential changes to Medicaid are currently being considered by Congress and the Trump Administration. Under legislation recently introduced in the House of Representatives, Congress is considering the following changes to the program:

  • Discontinue extra federal funding to Medicaid expansion states in 2020.
  • Replace formula based federal funding for state Medicaid program, currently based on population and poverty levels, with federal funding caps per Medicaid beneficiary.
  • Eliminate required federal benefits package and provide states with increased flexibility to determine covered medical services.

On behalf of individuals with Down syndrome, we are concerned regarding elements of the proposal that could potentially reduce access to health insurance coverage, restrict the types of services covered, and increase out of pocket costs for low-income Americans with Down syndrome. As a non-partisan organization, Global supports thoughtful discussions and debate on how we can improve Medicaid, better manage federal and state expenditures to support the program, and maintain access to affordable quality health care for some of our most vulnerable citizens. We therefore urge Congress and the Trump Administration to think carefully regarding the impact these changes could have on our community and look forward to participating in this discussion with members from both parties.