By MEGAN HART

Kansans with disabilities dug in for a long fight to change how Medicaid and private insurers cover long-term care.

More than a dozen people met Tuesday at the Topeka Independent Living Resource Center to write letters asking U.S. Sen. Pat Roberts, a Kansas Republican, to co-sponsor Senate Bill 2427, called the Disability Integration Act.

Mike Oxford, director of the center, said the bill would classify home and community-based services as a right for people who are elderly or have disabilities.

Under current federal law, Medicaid includes a right to care in a nursing facility, but states can decide if they want to offer home services as an alternative and can restrict what services they offer, how much they pay and the number of hours, he said.

The bill also would apply to publicly owned facilities, such as county-owned nursing homes, and long-term care insurance policies sold on the private market, Oxford said. “Right now if you say Medicaid, all Congress wants to talk about is how to cut it,” he said.

“This is not just a Medicaid bill, it’s a civil rights bill.” No one from the offices of Roberts or Sen. Jerry Moran, also a Kansas Republican, responded to questions about their stance on the bill.

Oxford said he doesn’t expect the bill to get through this session of the U.S. Senate, but its sponsor, Sen. Charles Schumer, a New York Democrat, plans to reintroduce it next year.

Kathy Lobb, legislative liaison for the Self Advocate Coalition of Kansas, said many Kansans who have a disability or are elderly don’t have the resources to help them remain in their communities. She receives some assistance through a program that allows her to remain eligible for Medicaid services while earning more income than typically is allowed.

The issue is personal, Lobb said, because she knows what it’s like to live in an institution. She said she went to a high school for disabled youth in Nebraska that functioned like an institution and didn’t have some basic freedoms until she graduated.

“We weren’t able to go out in the community,” she said. “We couldn’t choose when to eat or when to sleep.”

Linda Naugle said Tuesday she was writing to Roberts because offering community-based services could have helped her mother, who had to go to a nursing home because four hours a day of home care wasn’t enough to meet her medical needs.

“She never wanted to leave her home,” Naugle said. “She said, ‘I don’t care if I just lay on my couch and die, I don’t want a nursing home.’”

Most people will have medical needs or a disability for at least a short time at the end of their lives, Oxford said, so finding ways to serve more people in the setting of their choice will be increasingly important as the population ages.

“In another 15, 20 years, there won’t be a family in America that isn’t going through this because of the aging of the baby boomers,” he said.

Other provisions of the bill would:

• Require states to plan for an adequate supply of affordable, accessible housing.
• Prohibit waiting lists for home and community-based services.
• Prohibit cost caps or service limitations.
• End the practice of offering different services based on type of disability.
• Increase the federal Medicaid match for home and community-based programs.
• Require states to pay “adequate” reimbursement rates for home services. The average hourly wage for home care workers nationwide is about $9.60.

Megan Hart is a reporter for KHI News Service in Topeka, a partner in the Heartland Health Monitor team. You can reach her on Twitter @meganhartMC