Topeka ? In the Capitol building, they are numbers on a waiting list.

But in Lawrence and other communities across Kansas, they are people struggling to stay in their homes and out of institutions.

Advocates for people with disabilities want Gov. Kathleen Sebelius to release $20.2 million in federal funds to remove more than 2,000 people from a waiting list to begin receiving home health care services for low-income and disabled Kansans.

Vera Doleman, a Lawrence woman who works the midnight shift at Hallmark, is one of those patiently waiting for the state to provide assistance for her 6-year-old granddaughter, Shaterika Nicole.

Shaterika is “like a newborn,” having suffered as an infant from shaken baby syndrome. She requires total care, Doleman said. “Everything has to be done for her,” she said.

Doleman said she had been told by state officials that Shaterika was at the top of the list to get help.

“But I’ve been on that list for quite a while,” Doleman said. “They told me she goes on the list when she turns 5. She turned 6 in September.”

The Big Tent Coalition, representing 85 groups that lobby for more social service spending, said it would cost $20.2 million to take care of 2,000 people on Medicaid waiting lists for home health care.

Since the beginning of the year, as the waiting lists have gotten longer, hundreds of people have died or been placed in more expensive nursing homes, according to Shannon Jones, a spokeswoman for the coalition.

“These numbers are very disturbing to the Big Tent Coalition,” she said.

Meanwhile, the state has received two payments totaling $91 million from the federal government as part of Kansas’ share of fiscal relief.

It’s that money the coalition has targeted as available to erase the waiting lists.

¢ Disabled holding Sebelius to word (10-17-03)¢ Rally promotes services funding (4-3-03)¢Kansas Home Care Assn.¢Big Tent Coalition

The coalition said $12.8 million was needed to take care of 940 developmentally disabled persons on the waiting list; $6.3 million for 986 people who are physically disabled; and $1.1 million for the 73 people who have suffered severe head injuries and are on a waiting list.

In addition, nearly 1,400 children and adults are in need of additional support services but are not included in the waiting lists, the coalition said.

Sebelius said she hadn’t analyzed the specifics of the Big Tent Coalition’s request yet, but said, “It’s going to go on the table with all the other questions.”

She added, “The one cautionary note about the federal money is that it’s one-time money, so whatever we do this year needs to be projected out for several years. It’s great to have $90 million that we didn’t have before, but it is a one-time shot that we won’t have … in the future, so I think we’re looking at that very carefully.”

Vera Doleman kisses her granddaughter Shaterika Nicole Doleman, 6. Shaterika is in an almost vegetative state, and is on a waiting list for home health care services from the state.