"It's frightening": the parents of a child with disabilities describe their fear of Medicaid cuts

Jason Stein has a bruise on his forehead that won’t go away. A severe intellectual disorder causes him to hit himself for no apparent reason, with his hand, or against the floor or the wall. He has to wear a helmet when he goes out on the street: leaving his comfort zone causes even more stress. His parents take turns being with him at all times.

At nine-years-old and weighing 70 pounds, Jason cannot fend for himself. He can barely walk a few consecutive steps, and uses a wheelchair when out of the house. When he turned two, he was diagnosed with autism; he has epilepsy, is allergic to various foods and suffers from GERD (Gastroesophageal reflux disease), a gastrointestinal disorder that causes acid reflux and vomiting. He needs regular medical check-ups, as well as speech, physical and occupational therapies.

Jason’s parents manage his care thanks to Medicaid, the federal and state aid program that provides health care coverage to one in five Americans, or 75 million people.

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Medicaid is not just for the poor; it guarantees coverage for pregnant women, children, the elderly and the disabled with limited incomes. It pays for half of all childbirths, for the health services of 39 percent of children and 60 percent of children with disabilities in the country. In addition, it covers the costs of 64 percent of people living in nursing homes, including many from the middle class.

A family on the verge

Jason's parents know their family’s situation is likely to change if Senate Republicans pass the Better Reconciliation Care Act (BRCA), which would repeal the Affordable Care Act, known as Obamacare.

"We have followed every step of the news because it affects us terribly,” says Jennifer Stein, Jason’s mother. “If that law passes, it would be devastating for us.”

The future of Medicaid has become a central point of debate. The Republican bill proposes huge changes to the Medicaid program, which was created by President Lyndon Johnson in 1965. Among other things, it would put a brake on Medicaid expansion created under Obamacare, which was adopted by 32 states. It would also restrict eligibility, establish a maximum amount of annual coverage (currently unlimited) and reduce the federal funds earmarked for the program (it contemplates cuts of 26 percent over a decade).

Jeff Stein, Jason’s father, works as a physical education teacher at a public school in Seminole County, in central Florida. Even though he has health insurance through his employer, he would be unable to afford the increase in premiums if his son and wife were added to his coverage.

"The monthly premium would be unpayable; about $600 more a month,” he says.

According to Anne Swerlick, an analyst at the nonpartisan Florida Policy Institute, Jeff’s problem goes far beyond cost.

“Even if he could get his child covered by private insurance, typically private insurance doesn’t cover the type of services that children with autism and other developmental disabilities need,” she says. “All kinds of behavioral treatments and in-home services are needed to keep the child at home, rather than at an institution. There are children who have private insurance but they also get Medicaid to wrap around services.”

“This is not a game, this is our life”

Jason's mother is his main caretaker. Like her son, she suffers from epilepsy. She goes to the doctor once a year and pays for the appointment out-of-pocket, just as she does when she buys her medicine each month, at a cost of $150. Unlike her son, she has no insurance, as she does not qualify for Medicaid. That’s because Florida decided not to expand Medicaid under Obamacare. The 32 states that did expand Medicaid now include individuals who earn up to 138 percent of the poverty level. But in Florida, the Stein family's income is simply not low enough to qualify.

Swerlick says Florida should give the parents of children with severe disabilities a pathway to Medicaid coverage. “The fact that the mother is not insured has consequences,” she says. “There is a great deal of research showing that children are much more likely to access the health services they need if parents are insured. There are thousands of low-income parents in Florida without coverage because the state did not expand the program."

Because Florida is one of the states that spends the least on Medicaid - an average of $5,864 per person per year - it's likely to receive even fewer federal dollars for Medicaid under the proposed reform. That means state lawmakers may be forced to further cut funding and eliminate some optional services. Currently, the federal government provides 61 cents of every dollar Florida spends on Medicaid.

"We are people who need help and what terrifies me that Republicans want to offer us even less than we already have," Jeff says.

The disabled and their families have been among the loudest in opposition to the Republican proposal. For decades, the only type of long-term care that beneficiaries with disabilities received was in special care centers. But in the early 1980s, Medicaid began offering the option of "home-based, community-focused services."

Now, disabled activists from the group ADAPT say the cuts threaten their ability to live at home. That’s a threat to their freedom.

The Stein family’s greatest hope is that Jason can remain at home.

"Many people think that some of us need help because we do not do enough," Jeff says. "But no. I work hard. I do everything I can. Making health access a political issue is inappropriate. This is not a game, this is our life.”