Access to in-home care for disabled children should be a guaranteed civil right


By Neil Gundavda, MPP ’14, Assistant Opinions Editor

Last month, I was reading Stephanie Mencimer’s “What’s It Like to Wake Up From a Tea Party Binge?—Just Ask Florida!” in Mother Jones Magazine.

Mencimer highlights the preposterous machinations of Governor Rick Scott and his tea party cronies such as cutting $3 billion from the state’s education budget or rejecting federal money for programs ranging from high speed rail, teen pregnancies/STD prevention and care for kids with terminal illnesses. His administration has gutted essential services like mosquito control and septic tank inspections (I can attest that both are necessary in Florida, where West Nile Virus and feculence are always possibilities).

Scott’s previous criminality and general remorselessness has given him few friends in the Sunshine State, and his bald and gaunt visage has earned him the monicker “Lord Voldemort.”

Governor Voldemort’s visceral rejection of Obamacare created a situation in which a single mother with two children cannot qualify for Medicaid if she makes more than $3,200 per year. Obamacare extends this ceiling to $25,390 for a family of three and even picks up the tab for Medicaid for three years. Voldemort has hinted at reforming this absurd Medicaid ceiling, but not before millions of Floridians have had to scrimp by on meager healthcare benefits.

However, what struck me most was the story of Abdel Rahman Gasser, a 17-year old Egyptian immigrant who was left with the cognitive functioning of an infant after his car hit a concrete pole. Gasser is stuck watching TV a nursing home in Tampa away from his family because the state is refusing to pay for in-home care. Florida’s Medicaid will pay for a nursing home bed for disabled kids, but not for at-home nursing services.

Keeping with the absurd slash and burn mentality, the Scott administration contracted a private company to review services for disabled children “to control the cost of home care.”  The contractor argued that home care was only a convenience and not medically necessary. Florida’s disabled children lost funding for in-home care. The contractor claimed the state saved nearly $45 million.

About 250 kids are now institutionalized – and neglected – in nursing homes and geriatric care because the state wanted to save a paltry $45 million. Obamacare offered the state $37.5 million to move these children out of nursing homes, but Scott refused out of principle.

Families of disabled children have to work, since medication and equipment for their children would be near impossible without health insurance. However, these families also have the right to spend as much time as possible with their children and their children have every right to not spend their time in a geriatric ward.

Research on disabled children living in nursing homes in the United States indicates that this may be an endemic problem. There are more than 6,000 people under the age of 21 living in American nursing homes, meaning that there are thousands more in their early and late 20s trapped in such facilities. NPR’s Joseph Shapiro actually reported on the problem as far back as 2010, and provides numerous heart-breaking vignettes on parents forced to put children in nursing homes because state-based Medicaid would not support in-home care.

One mother in Georgia had to take her severely disabled son to Montgomery, Alabama, since Georgia refused to provide help outside of a nursing home. She has made the 400-mile round trip every other weekend for the past 13 years.

The most egregious cases are not limited to the South. Revenue-starved states have been looking for ways to save cash, and disabled children seem to always be easy fodder. Illinois has around 600 with severe disabilities who receive in-home care, but that care ends when a child turns 21. Once a child “ages out” – about 20 per year – the child either stays at home and overwhelms his/her family or goes to a nursing home.  The Department of Justice has intervened on behalf of families of those who turned 21 in Illinois, arguing that the children have a right to stay at home with their parents.

The Obama administration has tried to stop the switch to nursing homes where it has occurred, and the Department of Justice also recently issued an ultimatum to Florida. This points to a larger problem: Why do we not consider it a guaranteed civil right that disabled children and young adults remain with their parents at home? The U.S. Supreme Court ruled as much in Olmstead v L.C., claiming that the American Disabilities Act gives disabled people the right to government-funded long-term home-based care.

Despite this, we have state governments forcing children into nursing homes and nearly 400,000 elderly and young disabled people on waiting lists for home-based care funding.

Although the Justice Department is working to represent these disabled children, the lessons from this case are clear. Tea-Party politics hurt the most vulnerable in our society. Nothing, not even disabled children dying alone in nursing homes, will stop the slash and burn mentality of austerity.

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