Since President Barack Obama took office, the U.S. Department of Justice has stepped up enforcement of the federal laws dealing with treatment of disabled persons.
As a result, settlements have been reached or lawsuits filed in 17 states, and now federal officials are scrutinizing Kansas and Missouri with an eye toward similar actions.
“We’ve met with them a couple times,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas, a nonprofit, legal-rights group headquartered in Topeka. “They’ve been reaching out, looking for input.”
Xochitl Hinojosa, a spokesperson for the U.S. Department of Justice, confirmed agency officials have been taking a look at Kansas.
Thus far, she wrote in an email to KHI News Service, the review has focused on “issues important to the disability rights community” in Kansas and Missouri.
Nichols said the talks with the justice department are still in the “gathering-input stage” but have centered on “Olmstead concerns,” a reference to the 1999 U.S. Supreme Court decision in the case of Olmstead v. L.C.
The court ruled that unjustified institutionalization of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA).
The decision has been interpreted to mean that states have an obligation to provide services for disabled persons in settings most appropriate to their needs.
“What Olmstead says, essentially, is that unnecessary institutionalization is discrimination, that people with disabilities have the right to live in the most integrated setting,” Nichols said. “Now, that may mean a place of their own or an apartment or sharing a duplex or maybe being in a small group home. But it doesn’t mean a big congregate setting like a state institution or a nursing home.”
Earlier this year, Nichols urged legislators to close Kansas Neurological Institute in Topeka and Parsons State Hospital, state institutions for people with severe developmental disabilities.
Since the Olmstead ruling, he argued, the two institutions’ 350 residents were entitled to – and the state was obligated to provide – comparable care in a community-based setting.
“Clearly, a state hospital is not a ‘most integrated setting,’” Nichols said.
In January, Gov. Sam Brownback proposed closing KNI.
But legislators later rejected the measure after hearing some residents’ family members claim that their loved ones were too fragile and would not survive in a community setting. The idea of closing the hospital also drew sharp opposition from Topeka’s legislative delegation, made up of Republicans and Democrats. KNI is a major employer in the city.
Nichols said he’s cited the KNI debate in the meetings with federal officials.
“Olmstead says there’s to be informed consent,” he said. “It’s not informed consent – that you have a choice between living in a large-bed congregate setting and living in the community – when everyone around you is saying, ‘Oh my God, if you move to the community, you’ll die.’”
Most KNI residents are unable to walk, speak, bathe or feed themselves. Many are in wheelchairs. Advocates of community-based care say people with similarly serious disabilities already are living successfully outside institutions given proper circumstances and assistance.
Nichols and others have long argued that many disabled Kansans lack access to home- and community-based services and often end up in nursing homes or other institutional settings because their families are unable to care for them and they have nowhere else to go.
The lack of choice, some advocates say, seems to violate the law as rendered in the Olmstead case. Others say the state is close to being in violation, if it isn’t already.
Today, more than 5,000 people with developmental and physical disabilities are on waiting lists administered by the Kansas Department of Social and Rehabilitation Services.
“In terms of there being an Olmstead violation, I don’t know that we’re there yet,” said Mike Oxford, executive director of the Topeka Independent Living and Resource Center. “But more and more, we seem to be moving in that direction.”
Oxford said he’s “real worried” by reports that a reform group chaired by Lt. Gov. Jeff Colyer is looking for ways to cut the state’s Medicaid spending by $200 million to $400 million.
“I don’t see how they can do that without some pretty significant cuts in home- and community-based services,” Oxford said. “At some point, that’s going to mean people with disabilities who need services if they’re going to be able to live in the community aren’t going to have access to those services. When that happens, they lose their ability to choose. Their only choice is a nursing home. That’s where you get into Olmstead. There has to be freedom of choice.”
Oxford said he’s also troubled by soon-to-be enacted pay changes for attendant care workers who help people enrolled in home- and community-based programs.
New payment system
In September, SRS and the Kansas Department on Aging are scheduled to move away from a system with agents who coordinate care and pay caregivers to one that separates the workers’ wages from administrative overhead.
The switch is expected to cut costs at KDoA by about $2 million a year and at SRS by about $4.6 million a year.
Oxford and others predict the coming rate changes won’t cover their programs’ costs and will result in a $1-an-hour cut in the take-home pay of attendant care workers.
“This is really going to be difficult,” said Monte Coffman, who runs Windsor Place, a Coffeyville-based program that provides in-home and nursing home care for about 1,500 frail seniors and people with disabilities.
“I totally understand the need to cut spending, but the way they’re talking about doing it is really going to affect the workers,” he said. “It’s the lowest people on the economic food chain who are going to bear the brunt of this thing.”
In a July 12 email to KHI News Service, Sara Arif, a spokeswoman for KDoA, said the department “is in the process of clarifying” how the new system will work.
SRS has not yet announced its plan for implementing the new system.
Whether the changes lead to more people with disabilities going without services and moving to nursing homes, as some predict, remains to be seen.
“It’s already a tight market when it comes to finding people who are willing to do this kind of work,” said Ami Hyten, assistant director with the independent living program in Topeka. “I suspect there will be even fewer willing to do it with a cut in pay.”
The payment changes could create Olmstead problems for the state, Oxford said.
“Olmstead says there has to be choice,” he said. “But if you’re not going to pay people enough to do the work, the services aren’t going to be there. That’s not much of a choice.”
The Olmstead case involved two Georgia women who had been confined to a state hospital for the mentally ill because community-based services weren’t available for them.
Though the ruling was widely hailed by advocates for the disabled, its effect on state policies until last year had been slow to develop.
“I think it’s safe to say that enforcement of the Olmstead decision wasn’t a high priority of the previous (Bush) administration,” said Nichols, a former Democratic state legislator from Topeka. “But the current (Obama) administration has made it a top priority. I mean, for eight years, we didn’t see these guys; now, they’re everywhere.”