Disability Rights Advocates Go to D.C

by Mike Hedeen
photo by Kurt Mueller
Published Monday, March 23, 2009

Some local residents spent Monday night on the road traveling to Washington, D.C. They will join others from across the country for the introduction of legislation that could change Medicaid’s long-term care program.

About 30 area disability rights advocates made the trip for the introduction of the Community Choice Act. The bill will be introduced on Capitol Hill Tuesday afternoon. Many say they didn’t think the day would ever come that this legislation would get introduced, as it’s been 14 years in the making.

“It’s very exciting,” said Chris Hilderbrant of the Center for Disability Rights. “Certainly we would have liked to have it done 12 years ago but this is every exciting and I think now is the time.”

The Community Choice Act would give the disabled a choice when it comes to long term care. Many end up in nursing homes because states are not mandated to fund the same type of care in a person’s home.

Bobbi Wallach has MS and has spent the last two years at the Fairport Baptist Home. She’d like to once again live on her own.

“I’m young, I’m only 51. The mean age in the home is 80 and most friends I’ve made there unfortunately end up dying, so it gets very depressing,” Bobbi said.

She was being cared for by her husband until he hurt his back and was no longer able to tend to Bobbi’s needs. And she recently found out she is only allowed to leave the home 18 days a year.

“If I’m out 19 days I lose my bed and I’m out on the street,” she said.

The area advocates will remain in Washington for Wednesday’s Senate subcommittee hearing on long term care as part of health care reform. They’ll return to Rochester early Thursday morning.