As Pamela Bromme watches “American Idol” on TV in her south Wichita apartment, next to her chair is her arsenal for fighting the disease that has disabled her – 15 kinds of pills and a cane.
Bromme, who suffers from hepatitis C and rheumatoid arthritis, said that for her, having to wait for state disability services is more than an inconvenience and could be a matter of life and death.
She said her doctor wants her to go back onto debilitating chemotherapy-type drugs that offer the best chance of reducing – and possibly eradicating – the virus that has devastated her body. But without someone to come to her home and assist her with daily living tasks, she fears she will be unable to meet the challenge of caring for herself and the three grandchildren who live with her.
Bromme has been on the waiting list for home- and community-based services since May 2009. She’s still about 200 places from the head of the line.
“I could use some services,” she said. “And I’m sure somebody could use a job.”
Bromme is one of hundreds of disabled people who have filed complaints with the federal Department of Health and Human Service claiming that Kansas is failing to comply with a Supreme Court ruling favoring home care over institutionalization.
And last week, Health and Human Services administrators traveled from Washington to Kansas to meet with state officials about the waiting lists for people with disabilities. The administrators, plus representatives of the HHS office in Kansas City, met with state officials from the Department of Social and Rehabilitation Services and the Kansas Department of Health and Environment, said SRS spokeswoman Angela de Rocha.
Representatives of disability rights groups met separately with the HHS officials, said Shannon Jones, executive director of the Statewide Independent Living Council of Kansas, who was at the meeting.
HHS officials will evaluate whether Kansas is in compliance with the Olmstead Decision, in which the justices ruled that it violates the Americans with Disabilities Act to institutionalize disabled people who could otherwise live in the community with proper support.
HHS, which pays most of the cost of disability services, could try to reach a settlement with the state — or, failing that, the Justice Department could sue Kansas to compel compliance, Jones said.
De Rocha said SRS “is making a good-faith effort to comply with the requirements of the law and our Kansas program and statutes to the greatest degree possible within the resources provided.”
Money at the root
Jones said money is at the heart of the problem.
In 2010, the state spent $140 million of state and federal funding on community-based services for people with physical disabilities and provided services to about 7,200 people, she said.
Gov. Sam Brownback’s proposed 2013 budget forecasts $118 million in spending and about 6,000 people served, she said.
“We (disabled people) not only had our budget reduced, we had the number of people reduced,” Jones said.
The problem has been growing since 2008, when SRS, strapped for cash, froze new applications for disability services. In 2009, the department eased the freeze somewhat, allowing one new person into the program for every two who left because they died or got better.
At the latest count, the state is serving 6,145 physically disabled people, with 3,433 on the list waiting for service. To eliminate that waiting list would require an additional $70 million in funding, $28 million of which would have to come from the state, de Rocha said.
The state is also providing services to 8,217 people with developmental disabilities. The waiting list for those services stands at 3,762 individuals. Of those, 2,631 are receiving no services and 1,131 are getting some services but are waiting for others, de Rocha said.
Clearing the developmentally-disabled waiting list would require $130 million, including $52 million in state money, she said.
The purse strings are in the hands of the state Legislature, where opinions are divided over what to do.
Rep. Brenda Landwehr, R-Wichita, chairwoman of the House Health and Human Services Committee, said she thinks it’s an exaggeration for Jones and other advocates to allege that the waiting list is costing lives.
According to SRS figures provided by de Rocha, nine individuals on the waiting list died in 2011.
Landwehr questioned how something like that could happen and, if so, why someone didn’t notify state officials that emergency conditions existed.
If someone is on the waiting list and there’s an emergency, they’re bumped to the top and action is taken immediately, Landwehr said.
"Did they die because you didn’t take action?" she asked.
The SRS criteria for emergency access to home-based services includes four factors: abuse or neglect; family dissolution involving a child or dependent spouse; domestic violence; or physician documentation that the disabled person has less than six months to live.
The crisis exception helps some people, but it’s kept many others from moving up on the waiting list, said Deb Umberger of the Independent Living Resource Center in Wichita.
Most of the spots that open in the program are going to emergency clients, meaning those who aren’t in such severe straits move forward slowly, if at all, she said.
The last person to move off the waiting list without an emergency exception had been waiting since January 2009, Jones said.
“It’s just a hideous situation all around,” Umberger said.
The resource center and similar groups around the state encouraged and assisted people in filing Olmstead complaints.
So far, 630 have been filed since 2009, Jones said.
Rep. Geraldine Flaharty, D-Wichita, the ranking minority member on Health and Human Services committee, said the situation faced by disabled Kansans is a disgrace.
"I think it’s just morally unacceptable that we have waiting lists," she said. "It’s our obligation to take care of these people."
"It’s a matter of the will to fund it," she said. "That doesn’t seem to be there."
Asked what the state could do, she said that Kansans voted for limited government.
"There’s a limit to how far you can limit government without doing bad things," she said.
Flaharty acknowledged the waiting list started before the Brownback administration took office.
"But it’s getting worse instead of better," she said.
While the argument continues, people on the waiting list continue to wait.
Teresa Gonzales, who lives in an apartment building for disabled people and seniors in Andover, said the lack of services is causing her disabling health problems to worsen.
She suffers from respiratory problems including emphysema and chronic obstructive pulmonary disease.
Ordinary tasks, such as cleaning her clothes or vacuuming, are extremely difficult and leave her breathless and dizzy, she said.
She said she hasn’t been able to do laundry in a month and she can’t take care of accumulated dust. The dust, in turn, exacerbates her breathing problems, she said.
“It’s a vicious cycle,” she said.
Like all the people on the waiting list, Gonzales is eligible for – and the government would pay for – full-time residential nursing care.
At age 45, it’s not an option she wants to consider.
“I may be disabled but I’m far from living in a nursing home,” she said. “I’m still somewhat enjoying my life.”
What she really needs, she said, is someone to come in and clean house, do laundry and carry grocery bags into the apartment.
That, she said, would help her more and cost the government far less than if she has to go into institutional care.
“I would have a better quality of life and it wouldn’t be as stressful,” she said.
Bromme, a 51-year-old widow, also dismissed the idea of going into nursing care.
“I don’t want to be one of those people who are homebound and can’t get out,” she said. “To me, that would be like not existing.”
Through eating right and staying healthy, she’s cut her virus load, the measure of her hepatitis, by half.
In earlier treatment, anti-viral drugs left her weak, sick and susceptible to infection.
Her doctor now wants to try an even stronger treatment, with worse side effects.
Bromme said she doesn’t know how she could do that without help.
Her grandchildren, 18- and 14-year-old boys and an 11-year-old girl, can and do help with chores like cleaning. But they’re not prepared to deal by themselves with a person on a debilitating, months-long treatment regimen, especially the kind of assistance she’d need for personal hygiene, she said.
“It’s scary,” she said. “I’m afraid to take the treatment, but I’m afraid not to. It’s like walking blind.”
Contributing: Brent D. Wistrom