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July 11, 2017

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

This post was last updated on September 10, 2021. As new policies are announced, FPI will update this page.

As Florida’s response to COVID-19 takes front and center, concern grows for low-income families who struggle to take precautions against the spread of the virus. Although Congress has passed the Families First Coronavirus Response Act to address, at least in part,  the public health crisis and economic fallout from COVID-19, many barriers continue to keep struggling families from accessing the assistance they need during the pandemic. As Florida initiates policies implementing the Act and addressing other barriers to the safety net, FPI will update this form. When available, hyperlinks are provided to agency documents or statements that provide greater detail  about the new policy.
On March 22, 2020, FPI and 44 other organizations sent a letter to Governor DeSantis, leadership in the Legislature and agency heads to urge action on 47 specific policy changes to reduce unnecessary barriers for Florida’s safety net programs in response to the COVID-19 pandemic. See the letter here.

Eulimar Nuñez and Ana Rodríguez of Univision write:

“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.

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 [emphasis added], 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.’"

Read more on univision.com

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