TOPEKA — Federal officials have not responded to Gov. Sam Brownback’s assertions that his administration is in full compliance with the Americans with Disabilities Act.

But advocates for the physically disabled say the governor’s recent open letter to federal officials asserting his administration is doing enough to help people with physical disabilities live in community settings should not go unchallenged.

“The state’s own numbers don’t support the governor’s position,” said Shannon Jones, executive director of the Statewide Independent Living Council of Kansas. “If you go back three years and look, there were 7,200 (physically disabled) people receiving services. Today there are 6,100. That’s not an increase, it’s a decrease.”

Jones’ group has been at the forefront of the state’s ADA-compliance issue, encouraging hundreds of disabled people to file complaints with federal authorities over a prolonged waiting list for services that has been growing since at least 2008.

An investigation

Officials at the U.S. Department of Health and Human Services responded to the complaints in 2009 by opening an investigation.

Then last month, Leon Rodriquez, director of the HHS Office of Civil Rights, announced that efforts to get the Brownback administration to reduce the waiting list for home- and community-based services had stalled and that the case had been turned over to the U.S. Department of Justice.

The decision increased the likelihood the state would be sued in federal court, similar to actions that the Justice Department has taken in other states with growing frequency under the administration of President Barack Obama.

Brownback responded to Rodriguez with a public letter expressing disappointment with the agency’s decision.

Underlying the dispute is a 1999 decision in a U.S. Supreme Court case, Olmstead v. L.C., which found that states have an obligation to ensure that Medicaid-funded services for people with physical and mental disabilities are provided in the most integrated settings appropriate to their needs.

Subsequent rulings involving other states have found that stalled or slow-moving waiting lists constitute violations of the ADA, which became national law in 1990 in large part thanks to then-U.S. Sen. Bob Dole of Kansas, who was left disabled for life by serious wounds suffered in World War II.

Assigning blame

In his letter to Rodriguez, Brownback, a Republican, argued that his administration had inherited the waiting list from former Gov. Kathleen Sebelius, who in December 2008 “implemented a freeze on new beneficiaries” and in March 2009 amended the policy to allow one person to begin receiving in-home services for every two who exited the program.

Sebelius, a Democrat, left Kansas to become HHS secretary in April 2009.

Brownback noted that in May 2009, HHS informed Sebelius’ successor, then-Gov. Mark Parkinson, also a Democrat, that the agency had started investigating the waiting list complaints.

“Effectively, Secretary Sebelius decided upon joining the Obama Administration that Governor Sebelius and her policies were in violation of federal law,” Brownback wrote.

According to Brownback, Rodriguez’s office “had virtually no communication with Kansas” after it began looking into the Olmstead complaints. Consequently, he wrote, HHS has a poor understanding of his administration’s efforts to reduce the waiting list.

Rodriguez has not directly responded to that statement. But in a letter sent last month to a Wichita woman who had filed a complaint with HHS, he said that his office had been in touch with the Brownback administration about the concerns through meetings, phone calls and other communications since Dec. 21, 2011, including a face-to-face meeting with the governor and “his leadership team” on March 29.

Brownback in his letter also noted that his administration had:

• Adopted a “one-off, one-on” policy that allows one person to begin receiving services for every one who leaves.

• Made it easier for people in “real crisis” — someone, for example, whose caregiver dies and who has no one to help them dress, bathe or shop for groceries — to get services and come off the waiting list.

• Instituted quarterly reviews designed to ensure quality care, increase efficiency and, possibly, allow more people to move off the waiting list.

‘Barely started’

Jones said the training sessions for the quarterly reviews mentioned in the governor’s letter started April 11, two weeks before Brownback sent his message to Rodriguez.

“He makes them sound like they’re a long-standing policy, but they’re not,” she said. “They’ve barely gotten started.”

The same, she said, could be said of the administration’s effort to make it easier for a person in an emergency situation to begin receiving services.

“It’s just getting started,” Jones said, “and frankly I don’t know that anybody knows what the changes are or how they’re going to affect the waiting list or if they’ll affect the waiting list.”

Meanwhile, the number of people on the waiting list keeps growing, Jones said.

“If you go back to 2009, there were 1,230 people on the PD waiting list,” she said. “Now there are 3,500. So we have more people on the waiting list and fewer people receiving services.”

Sara Arif, a spokesperson for the Kansas Department on Aging, said fewer people have been receiving home- and community-based services because their costs have increased in recent years.

“As the per-person cost goes up, the number of people who can be served goes down,” Arif wrote in an email to KHI News Service.

But as the cost of services have increased, total dollars allotted for the program have decreased in each of the two years of the Brownback administration. The governor proposed additional cuts in the coming fiscal year.

Spending cuts

Brownback in his letter said that Sebelius as governor “froze” the waiting list in December 2008 and compounded the problem just before leaving office in 2009 by implementing the new “one-on, two-off” policy.

But that’s also when spending on the program was approaching its peak of $140.7 million. The number of people served also peaked in fiscal 2010, when Parkinson was governor.

The Senate last week passed a budget that would add $2.5 million to the $118.3 million the governor proposed for the fiscal year that starts July 1, but that would still be about $20 million less than in fiscal 2009.

"I think it's interesting that the governor criticized Sebelius' waiting list but made no mention of the $22 million that he's (proposed to) cut from the PD (physically disabled) budget," Jones said.

Another fact not likely lost on the federal investigators is that the waiting list started during the collapse of state revenues following the economic recession.

The state’s economy has now begun to rebound and lawmakers are looking at a potential $600 million cash reserve in the coming fiscal year.

Money not the solution

But Brownback officials say they don’t believe more spending is the solution.

Arif said KDoA Secretary Shawn Sullivan was planning a full review of the waiting list. Effective July 1, Sullivan will head the new Department for Aging and Disability Services, and the program once managed at the Kansas Department of Social and Rehabilitation Services will come under his umbrella.

"It is important to look at these waiting lists holistically," Sullivan said. "It is evident to me that these services need to be carefully looked at and reformed. Simply appropriating more money will not solve the problem of the waiting lists."

Ami Hyten, assistant director at the Topeka Independent Living and Resource Center, said Brownback’s letter to Rodriguez revealed a faulty understanding of the Olmstead decision’s requirements.

“The notion that ‘one-on, one-off’ is somehow going to address the waiting list is a complete falsehood,” said Hyten, who is an attorney. “It’s good that the administration wants to grant crisis exceptions, but that just means that the people going off the waiting list are in crisis. It doesn’t get to the issue of the Supreme Court’s saying that waiting lists must move at a reasonable pace.”

Hyten said that in July, Renee Wohlenhaus, deputy chief of the HHS Office of Civil Rights’ disability rights section, told members of the Topeka Human Rights Commission that Kansas would have a hard time defending a waiting list that exceeded six months.

As it is, two- and three-year waits for services are not unusual.

“The last person who wasn’t in crisis who went off the (waiting) list had been on since January 2009,” Jones said.

States sometimes prevail

C. Talley Wells runs the Atlanta Legal Aid Society’s Disability Integration Project, which filed the original Olmstead case and is active in several ongoing cases across the country. He, too, has read Brownback’s letter.

“This isn’t about what happened three years ago or who was in power three years ago,” Wells said, remarking on Brownback's charges against the Sebelius administration. “It’s about the rights of people in Kansas and all across America who want to live meaningful lives in their communities and who don’t want to be in a nursing home.

“These are rights that were promised by the Supreme Court in 1999,” he said, “and the courts have made clear that a state’s economic hardship cannot be an impediment to carrying out its responsibilities.”

Wells said in his view the policies outlined in Brownback’s letter “absolutely do not fulfill the state’s obligations under Olmstead.”

Since Obama took office, the Department of Justice, acting on behalf of HHS, has joined or filed more than 25 lawsuits alleging discrimination against the disabled in 17 states.

"The states have prevailed in a few cases," Wells said. "But in the vast majority of cases, they've lost. And where they (states) have won, it's been because they're been able to show significant expansion in their (services)."

Since the Olmstead decision, HHS has settled more than 850 Olmstead cases.

According to the HHS website, 61 percent of the department's Olmstead investigations have resulted in corrective actions; almost 40 percent of those investigated were not considered civil rights violations.

For states that don’t prevail in the cases, the costs can be large.

Georgia has had to spend more than $100 million over the past three years on additional services for the disabled as the result of its settlement.

Rachel Seeger, a spokeswoman for Rodriguez’s office, declined comment. Barry Grissom, U.S. Attorney for the District of Kansas, also declined comment. It is standard procedure for officials to not comment on cases under investigation.