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Advocates for disabled sue state to thwart Medicaid policy change

This article first appeared in the St. Louis Beacon, June 27, 2012 - June is turning out to be a bittersweet month for some disabled Missourians. The good news is that more of them will be allowed to remain in their homes rather than move into nursing homes, thanks to $100.9 million made available under the Affordable Care Act if the law is upheld by the Supreme Court.

The bad news is that, beginning July 1, Missouri is headed for a Medicaid spend-down showdown unrelated to the ACA. That's the day when some chronically ill and disabled dialysis patients may end up having to move into nursing homes anyway as Missouri corrects what it says was an error in state Medicaid policy.

The corrected policy has triggered a lawsuit against state officials by some kidney dialysis patients and Paraquad, the advocacy agency for the disabled. They argue that the policy means kidney patients no longer will get adequate transportation to dialysis centers if they choose independent living over nursing home care.

The plaintiffs also argue that this policy is being carried out in spite of the fact that nursing home care is far more costly than covering transportation for those living in community settings.

The controversy began late last year when the Missouri Department of Social Services said some of its workers had erred over the years in the way they computed spend downs required of Medicaid recipients who are chronically ill or disabled.

The spend down is the difference between an individual's monthly income and the Medicaid eligibility limit. That difference was $772 last year. The needy can meet the spend-down requirement either by paying the state any amount exceeding the monthly income requirement or by incurring hospital costs exceeding what's needed to meet the requirement. The policy change means, effective July 1, some people will now have spend-down requirements as high as $500 a month if they want to continue to qualify for Medicaid. 

When advocates for the disabled complained that the new spend downs would be unfair and cause some to go without services or end up in emergency rooms, state officials decided to delay the policy until May to give residents more time to adjust. More complaints led the state to extend the deadline until this Sunday.

The lawsuit, filed last week in federal court in Jefferson City, seeks to stop the state. Officials with the state Social Services Department have refused to be interviewed. The only comment has come from Rebecca L. Woelfel speaking for the agency. In a one-sentence email response earlier this month, she says, "Regarding Medicaid spend down, all clients will be compliant with federal law by July 1, 2012."

Kimberly Lackey, staff attorney at Paraquad, says the policy change continues to confuse those needing transportation services.

"What people are sure of is that they cannot afford to pay more out of pocket for their health care or go without vital services like dialysis," Lackey says.

Before the policy change, Missouri provided Medicaid coverage for transportation to those needing dialysis treatment. Lackey says Paraquad and patients are asking that residents who choose to live in community settings get the same services that they would get in nursing homes.

"If the policy is implemented on July 1, many people won't be qualified for their Medicaid benefits on the first day of the month. This means they cannot access services, such as non-emergency medical transportation to their dialysis treatments."

In addition to Paraquad, the plaintiffs in the suit consist of five dialysis patients, one from Monroe City, Mo., and the others from the St. Louis area. They are represented by a combination of legal services groups and private attorneys.

In a statement, those attorneys argue that the new policy would deny people the opportunity to receive the same services in their homes as they would in a nursing facility.

"Their homes are the most integrated setting appropriate to their needs," the statement said.

In effect, the policy change would violate the Supreme Court's Olmstead decision, says Kirsten Dunham, director of policy and advocacy for Paraquad. The ruling, she says, guards against unnecessary placement in nursing homes and requires states to provide services to the disabled "in the most integrated setting."

In contrast to their disappointment over this policy, advocates for the disabled are pleased that Missouri will get more federal funding through the Centers for Medicare and Medicaid to help more chronically ill or disabled residents remain in their homes. But that $100.9 million in funding, announced on June 13, depends on the Supreme Court's ruling on the health-care law later this week.

Dunham says the money would help Missouri "tip the scales" of Medicaid long-term funding in support of home and community-based services. She says the money requires Missouri to develop "a more comprehensive, streamlined process to home and community based services."

While the funding would help more people stay in their homes and communities, it won't help those dialysis patients who have trouble meeting the spend-down rule.

The additional funding "is a good thing for Missouri," she says, "but the state still needs to address what it will do for dialysis patients who could lose access to their transportation and other Medicaid services."

Robert Joiner has carved a niche in providing informed reporting about a range of medical issues. He won a Dennis A. Hunt Journalism Award for the Beacon’s "Worlds Apart" series on health-care disparities. His journalism experience includes working at the St. Louis American and the St. Louis Post-Dispatch, where he was a beat reporter, wire editor, editorial writer, columnist, and member of the Washington bureau.