Topeka ? Nancy Glennon and her husband, Dan, need help raising their son. He has Asperger syndrome, which is related to autism.

“My son has behavior problems — more at home than at school,” Nancy Glennon said, explaining why she sought services through Home and Community Based Services, a state-run program that helps keep disabled children and adults out of institutions.

Her son has been on the program’s waiting list for 22 months.

“He’s pretty high-functioning, so he gets bumped back a lot by those with more severe disabilities,” she said. “I can understand that. There are lots of unmet needs out there.”

But what’s not so understandable, Glennon said, is the length of time they have waited for assistance. Before moving to Lawrence three years ago, she and her husband lived in Massachusetts, California and Ohio and never spent more than three months on a waiting list.

“Twenty-two months is too long,” said Glennon, one of about a dozen speakers at a Big Tent Coalition rally Wednesday on the Statehouse grounds. The rally drew about 500 protesters, including many from Lawrence as part of a delegation from Independence Inc.

The coalition, an alliance of 87 advocacy groups, is pushing for an additional $17.8 million, an amount members say would move more than 2,300 disabled adults and children off waiting lists.

“The average wait is 18 months,” said coalition spokeswoman Shannon Jones, noting that in the past year 433 people, most of them elderly, have been forced to move to nursing homes.

“It doesn’t make sense,” Jones said. “Those 433 people going to nursing homes cost (taxpayers) $12.3 million. The same number could have lived in the community — if community-based services were available — for $6.9 million. This defies all logic.”

Gov. Kathleen Sebelius, left, sits next to Lawrence members of the Big Tent Coalition. Seated from left are Kathy Lobb, representing the Self Advocates Coalition of Kansas; Michelle Garrison, who is on the developmental disability waiting list; and Brad Linnenkamp, who has cerebral palsy and was dropped from a Medicaid waiver program. Sebelius and coalition members on Wednesday attended the annual Rally For Freedom outside the Statehouse in Topeka.

Making progress

Still, Jones and others were quick to point out that this year’s budget deliberations have been better than last year’s.

“Last year, $8 million got added to the budget at the last minute,” said Rocky Nichols, a former legislator and now executive director at Kansas Advocacy & Protective Services in Topeka. “This year, the governor added $6 million at the start and the Legislature put in another $500,000. So at this point in the process, we’re in better shape than we were last year. But we still have a long way to go.”

The Coalition also wants an additional $36.2 million added to the budget for services and issues separate from waiting lists.

Gov. Kathleen Sebelius urged Coalition members to lobby their legislators for more money.

“You all are their bosses,” Sebelius said, drawing applause from the crowd. “They work for you, so make sure they hear from you and they know you’re paying attention.”

Big Tent Coalition

On other issues, Sebelius vowed to:

l Make sure all polling places are wheelchair accessible in time for the August primary election;

l Scuttle efforts to restrict plaintiffs’ attorneys use of state inspection reports in lawsuits against nursing homes.

Brad Linnenkamp, Lawrence, a member of the Big Tent Coalition, participates in the Rally for Freedom. Linnenkamp, who has cerebral palsy, was dropped from a Medicaid waiver program in 2003 because of state budget cuts.

“That is not good public policy,” Sebelius said. “It should not become law. … I’m making sure that message is heard loud and clear.”

Increases unlikely

Other lawmakers who addressed the group were Senate President Dave Kerr, R-Hutchinson, Senate Minority Leader Anthony Hensley, D-Topeka, and House Minority Leader Dennis McKinney, D-Greensburg.

Secretary of State Ron Thornburgh also addressed the group. House Speaker Doug Mays, R-Topeka, did not make an appearance.

Sebelius said later she would continue to look for additional money to put toward the Coalition’s agenda.

“These, I think, are folks who have to be the top priority,” Sebelius said.

But House Appropriations Committee Chairman Melvin Neufeld, R-Ingalls, said the governor had made education the top priority by proposing higher taxes to provide more money for schools.

As for social services, Neufeld said, “There’s much more likelihood that the amount we have in the current budget will have to be reduced than that it will be increased.”

Legislators are expected to wrap up most of the session’s budget deliberations this week. They return April 28 for the veto session.

Kathy Lobb, Lawrence, representing the Self Advocates Coalition of Kansas, applauds a speech by Gov. Kathleen Sebelius during the annual Big Tent Coalition Rally for Freedom at the Statehouse in Topeka. BTC is made up of more than 85 organizations that work to ensure that Kansas seniors and people with disabilities get the essential services they need. The rally was Wednesday in Topeka.