Across Kansas, people with developmental disabilities, their families or guardians, and those charged with providing services to persons with developmental disabilities are working together as never before to ensure quality community services are available.

With Developmental Disabilities Reform in Kansas, much of the responsibility of running the DD system in Kansas moved away from the state and toward local control. DD Reform was enacted by the 1996 Kansas Legislature. Under the new system, the 28 Community Developmental Disabilities Organizations across the state have become the single point of entry into the developmental disability system. They are also responsible for managing state and federal funds for services provided persons with developmental disabilities and making sure all people who need services receive them.

But while it may seem that power and responsibility for the DD system has shifted to CDDOs, in essence, the shift for reviewing the quality of community services went to people with developmental disabilities and their families or guardians -- the consumers of services.

Under DD Reform, Councils of Community Members have been or are in the process of being formed by each of the CDDOs. These councils, made up of a majority of consumers or their family members or guardians, look directly at system issues, including planning and implementation of services. For example, at many CDDOs where councils have been formed, they help determine the type of services that need to be expanded in the future.

Besides the councils, DD Reform called for creation of local quality assurance committees. These groups support on-site monitoring of services. The committees, which include people receiving services, their families or guardians, interested citizens, and provider staff, help assess standards of care for individuals receiving services from the CDDOs or their affiliates.

Department of Social and Rehabilitation Services Secretary Rochelle Chronister, who was instrumental in getting consumer participation in quality assurance into regulations, said this change was an important element of reform.

"Developmental Disability reform created a system to involve consumers and families in quality assurance," said SRS Secretary Rochelle Chronister. "People who know and care about how services are provided are now a key part of the system; they are working to see that consumer preferences are being honored."

Sallie Jensen, director of admissions and quality assurance at the Kansas Elks Training Center for the Handicapped (KETCH) in Wichita, said their agency has 20 people who volunteered to provide quality assurance. These 20 people, who include consumers, parents or guardians, community members, and volunteers from KETCH staff, divide into teams of two with each team visiting six to eight homes of persons receiving services each quarter.

"They all love it, they look forward to it," she said of the volunteer QA teams. "We even saw that with our own staff volunteers; their interest sparkles, too. It's a big job, a big responsibility. But they seem excited, interested. They see it's needed, and not a waste of time."

Jensen said KETCH set up the program so volunteers with the quality assurance group would get to know consumers they visit. A main goal of quality assurance is to find out from consumers themselves whether they are receiving the services they need and want. Quite often, the best people to help determine this are other consumers of DD services or their families.

Regular visits by the same QA team helps relationships develop, Jensen said.

"That's so they would really open up and tell them whether they were happy, and not just say they were happy to try to please someone," Jensen said.

Paula McHenry, the quality assurance director for ComCare of Sedgwick County, the CDDO in Wichita, said like KETCH, every large provider in Wichita now has a Quality Assurance (QA) team in place. She said the volunteers who form these teams have had good success.

"They actually enjoy it," she said. "They go out to review how services are going. It's on a voluntary basis; they've had to learn a lot about reviewing quality services."

Besides checking on the physical environment, McHenry said one of the main jobs of the QA teams is just to talk with the person receiving services.

"We measure how the person interacts with the staff," she said. "Do they treat them like a person? Do they have complaints or concerns?"

If there are areas of concern, the agency working with the individual must create a plan to alleviate the concerns. In Sedgwick County, this plan is reviewed both by the QA team and by McHenry.

The role of the Council of Community Members is more broad. At CLASS, the CDDO in Pittsburg, Pat Daugherty, director of quality assurance, said a group put together several years ago to prioritize slots available under the Home and Community Based Service waiver evolved into the Council of Community Members called for in DD Reform.

Daugherty said the council looks at satisfaction surveys of consumers, develops outcome measures for community service providers, and when abuse and neglect issues occur, this is part of the council's business. The CLASS Quality Assurance Committee is a subcommittee of the community council.

"We are setting up opportunities for committee members to do actual visits," she said.

In Wichita, Tony Bogardus is vice-chair of the Council of Community Members for ComCare. Bogardus, who has cerebral palsy and learning disabilities and works for Goodwill Industries, said the council provides information to officials with ComCare about the services that are going well and those that need to be changed or improved.

"We discuss the services and they get our input, especially from us who use the services," he said. "It makes me feel kind of important and feel like I have some control. And for a long time, I didn't feel that way. When I lived in a group home, I didn't have much control."

Sean Swindler, who is with the Self-Advocacy Coalition of Kansas, said advocates strongly support the concepts of DD Reform, including Councils of Community Members and Quality Assurance committees. But he said he has concerns about the level of training being supplied consumers and families on these groups by some CDDOs.

"It takes a long time to learn to recognize some forms of abuse and neglect," he said. "Local control can be done real well or done real poorly."

The quality assurance committees formed across the state join 12 state-level quality enhancement coordinators who also provide on-site monitoring of services through license reviews, outcome surveys, and informal visits. The state-level coordinators help determine whether the process of quality assurance by local providers and CDDOs is working properly.

Both the quality assurance teams and the quality enhancement coordinators are part of an interlinked system designed to ensure persons with developmental disabilities are receiving services that are responsible and responsive to their needs and desires.

Page Last Updated: May 29, 2001