"What choice did we have? We didn't want our son to go to the institution, and we couldn't care for him at home. We had no other alternatives." (Parent of a child institutionalized at Kansas Neurological Institute)

Until recent years, programs for persons with mental retardation or other developmental disabilities have been built around perceived needs - most often based on an evaluation of that person's deficits. The development of state institutional services, for example, was based on the view that people with disabilities needed protection from the demands of society.

That view has changed, and the lives of many people are the better for the change.

As Kansas moves forward in providing community services for persons with mental retardation or other developmental disabilities, the person with developmental disabilities and his or her parents will have choices as never before.

The introduction to "A Report on Consolidation of Institutional Services from Three to Two Facilities," published in March, 1992, by Department of Social and Rehabilitation Secretary Donna Whiteman and Mental Health/Retardation Services Commissioner George Vega gives a clear view of the philosophy behind closure:

"All Kansans, including those with mental retardation and other developmental disabilities, have the right and should have the opportunity:

*to participate and be integrated into the life of their community,

*to exercise options,

*to choose where and with whom they live and work,

*to participate in preferred leisure activities,

*to be educated in schools of their choice in their neighborhoods,

*and to maintain relationships with family and friends.

As the 1993 Kansas Legislature studies the issue of closure of one of the state's three MR/DD hospitals, it is important to keep in mind the reason SRS was asked by previous

legislatures to prepare a plan for closure.

Although a strong case for closure can be made based on cost savings, without exception, the focus of SRS and all those involved in changing from an institution-based system to a community-based system has remained on the impact closure will have on the individual consumer and his or her family.

That same focus should remain in current discussions, Whiteman said.

"Our study of the closure issue is based on the view that persons with disabilities are not fundamentally different from other people," she said. "But the history of providing services for people with developmental disabilities is to build a program and put people into it. But in keeping with the values of our study, individualized services and supports should be funded rather than programs."

Actions speak louder than words, and Kansas does have a track record in providing for former institutionalized persons with mental retardation and developmental difficulties. And it is an excellent track record, showing that values can be moved into practice.

In Kansas, the movement started with the Community Integration Demonstration (CID) project in 1991 by the Mental Health & Retardation Services Commission of SRS. Since the CID project was launched, 80 Kansans with mental retardation or developmental disabilities have been placed out of state hospitals into community settings, and only nine have returned to an institution.

MH&RS has a goal of 84 community placements in each of the next three fiscal years. Currently, there are 908 adults and children served in the three state institutions. With yearly movements of clients to the community, in five years the census in MR/DD institutions will be about 500 - too few to maintain three major MR/DD hospitals.

Building on the experience gained with community placement over the last two years, SRS officials say there will be no difficulty finding an adequate number of individuals and their families interested in moving from a state hospital to the community. Already, over 125 individuals now living in one of the three hospitals have expressed an interest in community placement.

As the community placement moves forward, these goals have and will be kept in the forefront:

*Provide individuals living in state mental retardation hospitals and their families a choice of whether they participate in community placement;

*Design person-centered plans for serving individuals who choose to be placed out of state mental retardation hospitals;

*Closely monitor Community Mental Retardation Centers to be certain that quality services are provided; and

*Develop and maintain necessary services in the two remaining state mental retardation hospitals to meet the needs of individuals who do not choose placement in community programs.

A common concern expressed by those looking into closure and community placement is whether the money to build needed services for individuals leaving the hospital and moving to the community will be available.

But as closure moves forward over five years, funds used to maintain individuals in the hospitals can concurrently be redirected to community services. And money saved from the closed hospital can be used more efficiently to help more people in the community because capital and fixed costs associated with a hospital will be eliminated.

Vega explained the Home and Community Based Services waiver for Mentally Retarded (HCBS/MR), an alternative funding source for persons who otherwise are served in an institution, begun in Kansas in July of 1991. The HCBS/MR provides the vehicle for funding to follow the person leaving the hospital and moving to the community.

"Kansas, like many other states, has experienced a gradual but steady decline in number of people served at each of its state institutions," Vega said. "This trend is certain to continue, given the growing commitment to improving and enhancing community developmental disabilities services in the state.

"In the absence of a decision to close one of the public MR hospitals now and proceed to phase out operations in an orderly manner over five years, each of the state hospitals is likely to experience a rapid, upward spiral in per capita expenses as fixed operating costs are spread across a dwindling resident base.

"The effect of this would be to erode our capacity to serve the rapidly increasing number of individuals on waiting lists for community services," he added.

It has also been suggested that a complete array of community services should be developed to meet the needs of the state mental retardation hospital population before the decision to close a hospital is made.

But this would be the exact wrong approach, according to experts in the field of mental retardation. They say creating "mini-institutions" in the community before people are ready to leave an institution would once again be fitting the program to the person, just as was done in the past.

"Clearly, given the experience in Kansas as well as other states, this is not at all appropriate," Whiteman said. "The needs of each individual who is mentally retarded are unique. The only way services can be designed and implemented to meet those needs is to create choices and provide community service options one person at a time."

"People with developmental disabilities are not damaged goods to be placed in a shop for storage," she said. "They are human beings with needs. And the fact is, even the most severe client is more like us than different."

Page Last Updated: May 29, 2001