Homefront Initiative—Georgia Advocacy
Disabled advocates strain to be heard at Capitol rally
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- More than 70 advocates for severely disabled people, including some two dozen in wheelchairs, struggled Monday to have their stories heard under the soaring vault of the Capitol dome.
After several speakers were marginally audible over an iffy sound system, the group resorted to a mass chant of "Free Our People!" that echoed off the dome and spread through the Capitol.
Most of those in attendance are currently not in institutions because of a program called Independent Care Waiver Program, or ICWP, which allows them to avoid living in a nursing home, instead they receive Medicaid funding for home health care. The state picks up about 40 percent of the tab, with the federal government paying for the rest.
Gov. Sonny Perdue has proposed to limit the amount that can be spent on individual cases, in order to allow another 46 people currently in nursing homes to join the program. But the advocates say the proposal robs Peter to pay Paul, and may force some severely disabled people into institutions outside the state.
"Capping services is an attempt to make everyone fit in the same box," said Cindy Saylor, whose 41-year-old brother requires constant supervision after suffering a brain injury in a traffic accident nine years ago. Caps would devastate those with the greatest need, she said, in order to spread benefits to those who may need them less.
Perdue said the state has to rein in Medicaid spending while spreading the benefits to as many people as possible. He proposes to cap expenditures so as to redirect about $1 million in ICWP funds to 46 new participants. The caps would be set at $43,000 for those who could be served by nursing homes, and higher for those who require hospital care.
"I really prefer the idea of guidelines rather than hard caps," Perdue said in an interview Monday.
Advocates say that some 116 people currently require care that costs more than $50,000, and these could lose their independence if caps are imposed.
Among them are Edwin McWilliams, a 43-year-old Macon man who was among 19 people from Middle Georgia who attended the rally. Paralyzed from the neck down in an auto accident 24 years ago, McWilliams relies on a respirator to breathe and speaks in a gutteral rasp with no breath or vocal vibrations behind it.
The ICWP allows him to live at home and work part-time for a disabled advocacy organization in Macon.
"The caps could institutionalize me and others in the program," McWilliams said. "The ICWP should serve those with severe disabilities." Other programs, he said, exist to help people with
lower-level disabilities.
Perdue said he wants disabled people to exert "personal responsibility" by directing their own care and finding savings, one area where McWilliams agrees. McWilliams estimates he could save up to 15 percent on the cost of his care if he were making decisions, rather than a Medicaid case worker.
But he can't cut his costs in half, he said. And since no nursing homes in Georgia accept patients who breathe with a ventilator, McWilliams and others might be forced to move into a care facility outside Georgia.
The House of Representatives is scheduled to vote on the fiscal 2005 supplemental budget today, and begin hearings on the FY2006 budget later this week.