Advocates for those with Down syndrome dread prospect of Medicaid cuts

There’s a greater sense of urgency for advocacy groups on World Down Syndrome Day, which is observed today.

Advocates and families of individuals with Down syndrome say they’re very worried about the possibility of cuts in spending on Medicaid. Republicans in Congress have drafted spending guidelines that could potentially lead to reductions in federal support of Medicaid, which covers more than 79 million Americans.

The Medicaid program also provides critical support for people with Down syndrome. Heather Sachs, policy and advocacy co-director of the National Down Syndrome Congress, tells Chief Healthcare Executive® that her group is “very concerned” about the possibility of reduced support for Medicaid.

“We're calling it a five-alarm fire,” Sachs says. “There's massive cuts on the table in Congress. The current administration has made clear that Medicaid is on the chopping block.”

Medicaid covers 17 million individuals with disabilities, and offers vital services to individuals with Down syndrome and their families, the National Down Syndrome Congress says.

Healthcare advocates and hospitals have implored Congress to preserve Medicaid funding, warning that many Americans would lose coverage and preventive services.

Hospitals are also warning that if fewer people have Medicaid coverage, they’ll end up treating more people without the ability to pay and end up providing care without compensation. Patients lacking coverage will end up going to emergency rooms when they’re sick, hospitals say.

In an interview this week, Sachs talked about some of the impacts if Medicaid is cut. She noted the importance of Medicaid in supporting health programs, prevention programs in schools, and services that help individuals with Down syndrome be active members in their community. With less federal support, states could face scale back vital programs, she says.

(See part of our conversation in this video. The story continues below.)

Potential problems

It’s unclear exactly how much Congress and the Trump administration will allocate for Medicaid. President Trump signed a short-term spending package last week to fund the government into September, but lawmakers and the Trump administration are going to be crafting a spending plan over the next several months.

House Republicans have set forth spending guidelines that call for the House Energy & Commerce Committee, which oversees Medicaid, to cut $880 billion in spending over the next 10 years. That doesn’t mean that all of that money will be cut from Medicaid, but analysts such as KFF and Fitch Ratings have said it’s virtually impossible to reach that target without reducing Medicaid funding or changing eligibility.

“They absolutely cannot meet that without massive cuts to Medicaid,” Sachs says.

Medicaid could cut reimbursement rates to providers, and Sachs says that would be problematic.

“There's actually already a shortage of Medicaid providers around the country, because, quite honestly, a lot of them don't want to deal with the paperwork,” she says. “And they don't get paid very much for the procedures that they do. And so the federal government is talking about making these cuts even more significant.”

Some lawmakers are also backing proposals to require Medicaid recipients to work, but the National Down Syndrome Congress and other critics say that ultimately will lead to fewer people in need getting coverage.

“Most people on Medicaid already are working,” Sachs says.

A KFF analysis found that nearly two-thirds (64%) of Medicaid adult recipients are working, while another 12% report responsibilities as caregivers, and 7% are in school. KFF looked at Medicaid recipients who aren’t getting benefits from Supplemental Security Income or Social Security Disability Insurance.

Many of those who aren’t working outside the home cite their heavy responsibilities as caregivers to adults or children with disabilities, Sachs notes.

The Robert Wood Johnson Foundation estimates that 5 million Americans would lose Medicaid coverage if work requirements are enacted in states that expanded Medicaid coverage. If work requirements go beyond states that expanded Medicaid coverage, millions more could potentially lose coverage, the foundation says.

“Work requirements are essentially just cuts,” Sachs says. “They've been tried in several states already as part of pilot programs, and it's been shown that they've led to massive amounts of people being dropped off the Medicaid rolls.”

Impact on states

Medicaid is a federal-state partnership, and Sachs fears the possibility of reduced support for states, leaving states in the position to determine if they can (or want to) make up that shortfall.

Certain services are required by law to be covered by Medicaid, including basic healthcare services, doctor’s appointments, prescriptions, and equipment such as wheelchairs.

But many families rely on services that are not required to be covered, and some are “impactful for our community,” Sachs says.

Many individuals with Down syndrome and other disabilities utilize Medicaid’s home and community-based services, which include job training, transportation to work and school, personal care and other important services. Those services are typically covered by the states.

If there are cuts in federal support for Medicaid, states may focus on essential services, and may opt to direct less money for those programs they aren’t required by law to support.

“It's kind of a perfect storm, because if the federal government is giving less money to the states, then the states have to make up the difference,” Sachs says.

There are already long waits for some of those services, she adds.

“What's very concerning to us is that with more pressure on these state Medicaid budgets, it's going to be even harder to get home and community-based services, and these wait lists are going to grow,” Sachs says. “People are going to have less access to the community and to employment, etc. And quite honestly, a lot of people are going to wind up in institutions if they're not lucky enough to have family members that will take them in or take care of them. We're going to see institutionalization rates rise.”

Medicaid offers important assistance to schools, financing early intervention, including speech therapists and occupational therapy. Medicaid also supports screening programs, including free vaccination.

“If you're cutting Medicaid and the schools aren't getting that funding, that goes directly to impacting the students’ health,” Sachs says.

‘Keep fighting’

The National Down Syndrome Congress says it’s especially concerned about President Trump’s plan to eliminate the U.S. Department of Education. The department ensures enforcement of the rights of children under the Individuals with Disabilities in Education Act. Sachs worries about how enforcement of that law is handled if there’s no education department.

“That's our biggest concern,” she says.

Even with Trump’s intentions clear, eliminating the education department requires the approval of Congress.

The federal budget process will likely play out over months, and Sachs says she knows it’s going to be a long process.

As the parent of a daughter with Down syndrome, Sachs says it’s personal for her. She says she remains optimistic. She recalls that the Affordable Care Act was on the brink of being abolished several years ago, and it remains in place.

“The advocacy community really rose up. And, I mean, we made our voices heard and we stopped it,” Sachs says. “And so, I like to think that if we're loud enough and persistent enough, we can stop this again.”

The National Down Syndrome Congress is working with other healthcare advocates to preserve Medicaid. She sees more opportunities to make that case.

“We have to keep fighting,” she says.