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.

Thursday, August 13, 2009

Might We Actually Be Seeing Some Common-Sense Healthcare Reform That Works for ALS?

Gov. Quinn signs spousal caregivers bill into law

GateHouse News Service
Posted Aug 13, 2009 @ 09:00 PM
Last update Aug 13, 2009 @ 09:02 PM


A new state law inspired by two Peoria-area families will set up a pilot program allowing a limited number of people to get paid for providing full-time care to their disabled spouses.

Gov. Pat Quinn's decision to sign the proposal Thursday came as welcome news to Kathi Kupferschmid, an East Peoria resident who is constant caregiver to her husband, Dennis. He has amyotrophic lateral sclerosis, or Lou Gehrig's disease, and it has robbed him of the ability to move anything except his eyelids.

"I might be doing some cartwheels later, if I can find the energy," she said in a phone interview Thursday evening. "I think it's wonderful. It was a long haul."

The Kupferschmids and another couple, Stefanie and Bryan Eklund of Knoxville, face similar situations that came to the attention of Sen. David Koehler, D-Peoria, and Rep. Donald Moffitt, R-Gilson, years ago.

The wives care full-time for their seriously disabled husbands, but neither woman is eligible for the Medicaid payments that would be given to an outside caregiver.

Koehler and Moffitt thought that was unfair, so they sought to change state law. Their effort last year fell short, but the 2009 version of their "spousal caregiver" proposal reached the governor's desk.

With Quinn's signature, House Bill 39 became law immediately.

The pilot project, to be overseen by the Illinois Department of Public Health's home services program, will allow spousal caregiver payments to a maximum of 100 families. Depending on the results, the pilot project eventually could get expanded.

"It's important because there are people that are in situations where they have no other means of supporting themselves and their families," because they're always attending to the needs of a seriously disabled spouse, Koehler said.

Let's hope this pilot is a success and that a former Illinois resident who is now living in Washington is watching a simple concept that delivers better patient care.

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