Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, May 19, 2009

Can Common Sense Rules For Caregiving Prevail?

From the Galesburg Register-Mail

Posted May 19, 2009 @ 07:09 PM
When Kathi Kupferschmid found out Tuesday that lawmakers had just voted to send the governor a plan to let people get paid for providing full-time care to their disabled spouses, one word leaped to mind. "Hallelujah," said Kupferschmid, who provides constant care to her husband, Dennis, at their East Peoria home. He has amyotrophic lateral sclerosis, or Lou Gehrig's disease, and it prevents him from moving anything except his eyelids. For the past six years, he has needed a ventilator to breathe. The Kupferschmids and another Peoria-area couple, Stefanie and Bryan Eklund of Knoxville, inspired state Sen. David Koehler and Rep. Donald Moffitt to push the legislation that now is on its way to Gov. Pat Quinn. The couples face similar situations. The wives care full-time for their seriously disabled husbands but are ineligible for the Medicaid payments that would be given to an outside caregiver. Koehler, D-Peoria, and Moffitt, R-Gilson, thought that wasn't fair. They introduced legislation last year to allow "spousal caregivers" to receive Medicaid payments, but the measure never reached the governor's desk. This year, though, lawmakers overwhelmingly backed a slimmed-down proposal to create a pilot program allowing spousal caregiver payments to a maximum of 100 families. The Illinois Department of Public Health's home services program would oversee the project. If deemed successful, it eventually could be expanded. The Illinois Senate on Tuesday approved the legislation, House Bill 39. It already passed in the House of Representatives and needs only Quinn's signature to become law. To counter concerns about "opening the floodgates," the bill was written to include safeguards to make sure that participants in the pilot program are qualified and that the state is protected from fraud, Koehler said. "It's clearly the right thing to do," Moffitt said. "It's going to help people." Kupferschmid said there's no doubt about that. Under the existing rules, she said, she and other spouses get penalized because they choose not to bring in outside caregivers. "No one will provide the care that I provide to my husband," she said. "Nobody has the interest that I do." But that means she can't work an outside job, and the family must keep a tight grip on finances. Unexpected expenses pose "a huge burden," she said. The spousal caregiver measure, if it becomes law, "is going to give me some peace of mind," Kupferschmid said.

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