NPR explores the right to at-home care for disabled patients

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

When it comes to summarizing the NPR news investigation “Home or Nursing Home,” you really can’t do much better than its tagline: “America’s empty promise to give the elderly and disabled a choice.”

The package is anchored by Joseph Shapiro’s wonderfully written profile of the family of a young woman who lives at home, despite the need for 24-hour intensive care. She’s 20, and Illinois Medicaid will stop covering her care as soon as she hits 21. Why?

It’s expensive to care for Olivia at home: nurses cost about $220,000 a year. Still, that’s less than half the cost of what the state counts as the alternative — having her live in a hospital. The Welters figure they’ve saved the state millions of dollars by keeping her at home.

But when she turns 21, the state changes how it measures cost. For an adult, the state says the alternative is no longer a hospital — it’s a less expensive nursing home.

At 21, Olivia and thousands like her around the country enter an uncomfortable gray area rife with lawsuits, acts of government and supreme court decisions. In fact, families like hers have lately been suing states – and winning. Shapiro explains how.

In 1999, the U.S. Supreme Court ruled, in Olmstead v. L.C., that under the ADA, people with disabilities often have the right to live in the community rather than in institutions. Since then, other federal laws and policies have said that states have an obligation to provide more home-based care. The new health reform law is filled with incentives for the states to spend more.

But federal law is contradictory. An older federal law, the 1965 law that created Medicaid and Medicare, says states have an obligation to provide nursing home care. Home care programs are still optional.

Also not to be missed: Shapiro’s profile of a patient advocate that doubles as a seamless history of how the system reached this point. A timeline and interactive graphic round out the package.

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