Since July 1, at least 14 Missourians who receive kidney dialysis to keep them alive have had to move into nursing homes in order to receive their life-saving care.
That's according to a Missouri Kidney Program survey of changes made to the way the state determines who qualifies for certain Medicaid services under its 'spend-down" program.
The result has been devastating to those 14 Missourians who wanted to stay in their homes and receive care. It's bad for their families. And it's bad for taxpayers who will have to pay more for nursing home than in-home services.
State and federal bureaucrats need to re-examine changes made to Missouri's spend-down program and fix this very real error in judgment.
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Thousands of Missourians participate in the spend-down program, which requires them to spend some amount of money, frequently less than $100 a month, on health care services to receive full Medicaid benefits. Basically, if you're poor, but not quite dirt poor, you qualify for spend-down. It's like a co-pay, but you don't get some of the benefits until after you've spent yourself into proper poverty. Many dialysis patients, for instance, pay a small portion of their medical bills, and the rest is covered by the state. The patients get to stay in their communities, and the taxpayers don't have to pay for more expensive care.
The program pays for transportation to and from medical services, for instance, but a change to the state rules on income requirements left many dialysis patients unqualified for services they previously had been receiving.
So they're not home anymore. They're at a nursing home. Their care is now more expensive to taxpayers and their health was put at risk if they missed any treatments.
This is the human cost of bureaucratic bungling when it comes to the very important state and federal function of providing health care to the poor, the disabled, and the elderly.
If you've ever spent much time around dialysis patients, you know why the comfort of home is so important to them. For three hours or more, often three times a week, they sit hooked up to a machine that cleans their blood of toxins, doing the work their kidneys can no longer do. The process is physically and emotionally draining. Those who have been there the longest often lack energy and purpose. Nurses and caregivers try to provide hope, not just medical necessity.
So the state failed when it made a move, allegedly to bring state rules in compliance with federal ones, that meant some folks would lose access to transportation. The state failed again when it didn't listen to advocates for the disabled, such as St. Louis-based Paraquad, who argued that implementation of the rules would create a hardship for many Medicaid patients.
Now those advocates are taking their pleas directly to the federal government, asking for help.
They should get it.
The Missouri Kidney Program survey paints a stark picture of a system where even well-trained advocates can't get answers from state workers in the Missouri Family Support Division to figure out whether their patients qualify for services.
"The financial costs to the state of Missouri will obviously increase . . . in addition to the human costs and suffering that this has caused," wrote one service provider.
Providing health care to the poor, the disabled, and the elderly is difficult. It's expensive. There are no easy answers.
Too many politicians, though, live in a world of black and white. They refer to programs such as Medicare and Medicaid as "entitlements" and talk about financial costs because it's easier than talking about the real people either receiving, or not receiving, the benefits.
But the human cost has to be considered when making tough political choices.
According to the kidney program survey, a high percentage of dialysis patients in Missouri are losing access to personal care services either because they don't understand the change made to the program or because they no longer qualify for the spend-down limits.
There are a variety of things the state could do to improve the program. Many of the suggestions were made by a former federal director of the Center on Medicaid and State Operations, Timothy Westmoreland.
In a statement filed as part of a lawsuit seeking to undo the changes to the Medicaid spend-down rules, Mr. Westmoreland outlined five options the state could consider, real solutions based on how other states keep dialysis patients in their communities and out of more expensive nursing homes.
To date, the Missouri Department of Social Services has been unresponsive to reasonable requests to remodel its program to better provide for the dialysis patients in its care.
It's time for the federal government to put pressure on Missouri to put patients first.
