As I sat back in my chair, I looked at my wife lying there, crying on her hospital bed. It had been quite a day. She had given me a push in the back sometime before day light and said, “Honey, it is time. The baby is coming." This is our third child so we thought we knew what to expect.

Her labor had been especially difficult and I knew that she would be exhausted, but nothing had prepared us for what happened after our baby girl was born. The doctor asked to speak to us before we had even seen her. Both of us were concerned, and now we don't know what to do.

How do you react when some one says, “Your daughter is retarded and she will probably never be able to take care of herself." I can't tell you about the feelings that run through your body when you hear some one say words like: "Don't take your new baby home. The best place for this child is a state institution for the feeble-minded. The baby will be nothing but a burden on you and will take away from the love and support that you can give your other children."

I don't know what to do. I have only seen one or two children like this in our community. I have never read a magazine article or a book about parents who have had a child with mental retardation.

It seems that we really have only two choices. We could send our new baby away to an understaffed and overcrowded institution that had a waiting list and was 60 miles away. The alternative would be to take her home and try to take care of her ourselves. If we keep her at home, we will certainly be alone and there is no information available telling us what to do. There is no program for our child in the schools or the community. She will just be at home all the time.

We don't know which way to go. If we don't send her to the institution, we are told that all we can do is take her home and love her, because she will never amount to much and she will probably die soon anyway.

Start Up

While the above story is not true and may sound depressing, it is not unlike what really happened in this country in the early 1950's. The choice for parents of a child with developmental disabilities (mental retardation) was to take care of the youngster themselves, in their home, or to send them to the institution. It was a hard decision to make and certainly there was no right answer. This was an issue that each family who had child with mental retardation had to answer for themselves. The lack of programs and assistance and made it difficult to know what to choose.

Some mothers and fathers decided they couldn't send their child to the institution, and they felt that alternatives needed to be developed. In Olmsted County, Minnesota, mothers like Jean Peterson, Louise Shefelbine, and Lorna Schunke started meetings in their homes. It was a time when mothers and fathers could share their experiences and learn from each other. As one parent stated, “During this time, it was just great to hear how other parents handled a situation and many times it helped just to learn that some one else had it more difficult than you did."

In an attempt to find other parents of children with developmental disabilities, Jean Peterson placed an advertisement in the local newspaper. She asked those interested to come to a meeting at her home. Seven families attended that first meeting.

About this same time, Louise Shefelbine went to the Minnesota State Fair. While she was there, she visited a booth operated by the newly formed Minnesota Association for Retarded. She picked up literature and came back home to tell the others what she had learned.

One of the early actions of this group of parents was to operate a small part-time school in rent space in local halls or church basements for their own children. Although they did not have a formal organization yet, Jean Peterson was the president of this newly formed group. Operating this class for 5 students continued to be a main focus of this group for many years to come.

As a result of these early efforts, the Olmsted Association for the Mentally Retarded, with 13 members, was incorporated in 1955. In June, 1955 this chapter was accepted as a member of the State Association with the proviso that they provide services for the surrounding counties until other chapters could be formed. At the same time, the members voted to join the National Association of similar chapters. Louise Shefelbine was elected as the Association's first president

In addition to operating their classroom, members pressed local and state officials for mandatory education for persons with mental retardation that was classified as trainable. They received no encouragement from elected officials, even though in 1957, the State made mandatory classes in the public schools for those individuals called educable and it was permissible to educate children listed as trainable.

Of equal importance as an activity, were the regular meetings held by this group. This was an era when people with developmental disabilities were, by and large, isolated from the rest of the community. Libraries did not have books on their shelves dealing with this subject. Monthly meetings were held with experts giving information on appropriate topics to parents. The social hours which followed the formal part of the meeting allowed for sharing and mutual parent to parent support. This became and remains a vital function of this chapter.

Reaching Out

While across the nation groups of parents such as this one were carrying on activities to obtain services, it certainly wasn't a time when people with developmental disabilities were part of our communities. Often the struggle was to overcome the prejudice or stereotype that persons with developmental disabilities could not learn and society should be sheltered from them.

These activities were not unique to Olmsted County and Rochester, Minnesota. Similar chapters were being formed throughout the state and nation. This chapter's efforts were, like many others, aimed at obtaining services for individuals with developmental disability and then, as soon as possible, to turn the provision of these services over to other agencies. In addition, from the start, this group of local parents, like many others reached out beyond their own families, to help all persons with developmental disabilities and their families.

Institutions

As mentioned earlier, one of the few early alternatives was to send your child with a disability to a state institution. This placement was most often a life-time commitment. For a long time, these institutions had been neglected by society. Through the combined efforts of the state and local chapters and the media, this situation was brought to the attention of the public in the mid 1960's. The Minnesota Arc worked with WCCO television to produce a film, "The Darkest Side," which showed deteriorating buildings, insufficient staffing and custodial programming for residents at the Faribault State Hospital. In 1963, Governor Karl Rolvaag stated "It is a fact that the institutions for the mentally retarded have been seriously neglected. The level of staff is absolutely unbelievable. It is often said that the measure of a society is the way in which it cares for its handicapped. We do not come out very well when this measurement is applied to us and I am determined to bring about a change."

It should not be surprising to anyone that one of the earlier programs of this local chapter was to work to improve the deplorable condition of these institutions. Evidence of this concern is found in the organization's official minutes. The first objectives of the Olmsted Chapter included working for improvements of state institutions and making financial contributions to them, as well as, giving camperships, and attempting to educate elected officials about the needs of this population. To accomplish these goals, as well as to continue running the classroom, creative methods of fund raising had to be developed and were always of prime importance in the chapter's goals.

After continued on-going efforts to make improvements at the state institutions failed, in the mid to late 1960's the State Chapter, supported its local chapters, began to take a harder stand. They called for the phasing out of large facilities and for the placement of persons with developmental disabilities in facilities closer to their home communities.

Alternatives to institutional living became available in the mid 1960's as a result of federal legislation. The Federal legislation of mid 1960's makes it possible for people with developmental disabilities to be served in community based immediate care facilities (local, smaller facilities). These and other changes in public policy meant that now alternative housing arrangements could be developed. This would provide new choices for people with disabilities and their families. Not only did people have an option of not selecting state operated institutions, but individuals placed in those settings, now could move closer to their home communities.

One of the first changes was to move residents from Faribault State Hospital to a smaller unit at the Rochester State Hospital so individuals would be closer to their families. This is only one step, however, in the evolution of changing rights of persons' with disabilities.

Day Activity Center

From the start, it was evident that this local chapter had influence within as well as far beyond the limits of the county. In addition, the concern for persons beyond the families of the immediate 20 members of the chapter, as of 1960, was apparent. As more families decided not to choose the institution, locally based education opportunities were needed.

Even before people were moved out of state institutions, parents from the Olmsted Association joined with other members of the state chapter, to reach our state capitol and support proposed legislation to establish day activity centers. These centers were to provide services and education to the school aged person classified as trainable, a population severely under served by public school systems. The Rochester School District was providing one part time trainable class, but it did not meet the community needs. The only other education available to this group was the class sponsored by the Olmsted Chapter for Retarded Children (OARC) as it was now called.

As a result, local leaders testified in St. Paul in support of legislation for the creation of day activity centers. In 1961, Olmsted County was one of six pilot sites established by the state. These centers were to provide educational programs for children and adults with developmental disabilities. Classes were first held in the old Bamber Valley School. Initially, the Board of Directors of the local OARC chapter hired staff, managed and provided one half of the funds to operate what was to be called the Olmsted Day Activity Center (DAC). In 1964, the DAC became an independent agency although leaders in one organization were often leaders in the other.

As public schools assumed responsibility for the education of school aged persons classified as trainable, the programs focus of the DAC shifted. The DAC's emphasis was now on infant stimulation, pre-school and post public school education, as well as serving those school aged children who were not admitted to the public schools.

Volunteers continued to support the DAC activities including helping physically to move from Bamber Valley School to the grounds of the Rochester State Hospital, then to Assisi Heights and finally back to the Olmsted County Campus Center. Over the years, the DAC became the Developmental Achievement Center and now is called PossAbilities of Southern Minnesota.

Coming Out

If one could look at the late 1950's and the 1960's as a period where the focus was on providing public education for, and acceptance of persons with developmental disabilities, then starting with the early 1970's, one could certainly see a coming out of the institution phase. The influence of the President's Committee on Mental Retardation and the publicity of numerous legal challenges in our federal courts brought about a nation wide focus on moving individuals with DD into the home communities.

The Rochester community was impacted when the State of Minnesota too action to move persons with disabilities to back to their home community. Often, this move into the local community too place before appropriate housing or services were available. By 1965, the 24 members of the Olmsted Association for Retarded Children, found themselves working to insure that these needs were met.

Recreation

As more and more individuals stayed in or moved into the community, it began apparent that there was a lack of recreational opportunities for people with disabilities. As the OARC had done before and would do again in the future, it would focus on starting a service and then transferring that service to an appropriate organization. A recreation program for adults was started in 1964. As was often the case in the history of this organization, when this program was developed, funds were limited. Initial equipment included one card table, 3 packs of construction paper, and a basement. At first, it was run by volunteers, but in 1967, a part time recreation director was hired to provide 2 evening programs per month for 60 adults.

These recreational activities were continually supported by volunteers’ efforts. In 1968, a speaker came to Rochester to speak to some 85 young people about opportunities for them to develop peer to peer support relations with individuals. The result of this meeting was a Youth Association for Retarded Children that existed for some 10 years and had an ongoing membership of some 20 persons. In addition to providing support at recreational meetings, this group conducted Christmas parties, became involved in legislation efforts, and was involved in many of the same activities as the local chapter. The youth had an adult sponsor, but determined their own direction.

In 1976, a recreational survey for people with disabilities was conducted in Rochester by Mankato State University. It was presented to the Rochester Park and Recreation Board and later to the City Council. As a result a Director of Recreation for the Handicapped was hired, and the local chapter discontinued its recreation program.

Group Homes

Federal court cases in the 1970's reminded society of the gap between its benevolent promises and its neglectful treatment of people with DD. In some situations, federal courts declared conditions and procedures of institutionalizing persons as unconstitutional. Minnesota also saw the courts take a stand challenging the use of institutions with the Welsch vs. Liken (later Welsch vs. Noot) case of this period.

There were other changes occurring that would impact the direction the Olmsted Association for Retarded Citizens (OARC) as it was called in mid 1970's. The passage of federal legislation in 1975 secured the right to a public education for all children, regardless of their handicap. Children now had the right to a public school education. Adults were served by the Olmsted Day Activity Center. Recreation programs were offered by the city. Society's images of persons with DD were changing. Institutions were down sizing. All of these changes meant that more and more parents were deciding to keep their children at home and the number of people with disabilities living in the local community was increasing.

In addition, as Welsch vs. Liken made its way through the court system admission to a state institution no longer became a possibility. Former residents of Faribault State Hospital were living in nursing homes, foster homes or with their families

These changes presented members of the OARC with new challenges. In November, 1974 a number of members began meeting to discuss the lack of residential facilities, this group of volunteers started out by making tours of facilities run by others, listening to presentation by state officials and experts in the field, and studying state rules and regulations for operating such facilities. As a result of two years of hard work and study, a group home ( 6th Street House) for 6 men with DD was open in May, 1976. Over the next 5 years, three more group homes (Bear Creek, Meadow Park, and Southside House) were also opened by this committee of OARC.

Following the trend established by this organization some year before, in 1981 Olmsted Arc Homes was incorporated as a separate agency. OARC Homes changed its name to Bear Creek Services in 1986. As in the past, many of the volunteers served in key capacities in both organizations.

During this same period, another group of parents began meeting to address the problem of providing a residential facility for children with severe handicaps. The efforts of this group resulted in the establishment of Hiawatha Children's Home. Hiawatha opened its doors in July, 1976 and a provided residential service for 36 children with severe disabilities as well was offering temporary respite care. While this effort was not a result of OARC's efforts, many of the same volunteers served both groups.

Staff

In 1976, OARC made a major change in its operation. State and county rules and regulations had become more complex and special skills, as well as time, were needed to be sure the organization was in compliance. In addition, privacy laws made agencies less willing to release personal data to volunteers. Therefore, in that year, OARC hired its first part time professional staff, Ann Ferguson.

Ann continued on staff until 1981 when Elizabeth (Buff) Hennessey replaced her. Currently, OARC has five professional staff and three support staff.

A Shift In Direction

The first twenty-five years of history saw OARC following a pattern of discovering what services were needed in the local community by people with DD, starting these services, and then turning their operation over to another agency. The 1980's say gradual shift occur in this mode of operation as this chapter, with over 250 members, began to put more emphasis on systems advocacy, family support, and consumer services.

Systems advocacy includes supporting persons with DD and their families to insure that government as well as private agencies work together to protect individual rights.

Family support, among other things, involves a parent to parent program which is a support and information network for parents of children with special needs. Support is provided voluntarily by trained support parents who have a child with the same or similar needs. Family support also includes advocacy as well as the offering of parent training and education. Support groups are also available for persons who need them. The Family Liaison Project is similar, but its emphasis is on children with DD from their birth to six years of age.

Adult services include individual advocacy as well as such program the Citizens Advocacy where a person develops a friendship with an individual who has a DD. This volunteer, called a Citizen Advocate, and their friend share interests while spending time together in their homes and the community.

The People First movement would also be part of adult services. This is an organization made up of people with disabilities. The main focus of the group is to support one another and increase each person’s self advocacy skills. The group, started in 1987, has over 80 members. Its goals are to assist become Self Advocates to talk for themselves, make decisions, be independent, learn new skills, help each other and to contribute to the community.

PACTT

While this shift to advocacy was carried on through the 1980's and into the early 1990's, OARC continued to work to be sure that the state of the art services were available to all people with disabilities. In 1989, OARC began meeting with ten other agencies in the community with a common goal of providing advocacy, training and consultation in technology to people with disabilities. Two years later, People Achieving Change Through Technology (PACTT) was established. For its first four years, the management of PACTT was the responsibility of OARC, the administration of this organization was left with an advisory committee. In 1995, following past traditions, PACTT's management was moved to the Ability Building Center. PACTT continues to provide computers, on-screen key boards, voice recognition, and switch activated alternatives to people with disabilities.

Collaboration

As it has through its early year, Arc Olmsted, the new name taken by OARC in 1991, has continued to grow and look for new ways to provide advocacy and support for people with DD and their families. In 1995, the chapter became the sponsoring organization as six chapters in southeastern Minnesota joined together in a collaborative effort to more effectively assure that people with disabilities have the full range of human and civil rights. Arc Olmsted and these other chapters, with the support of the State Chapter, will work together to insure effective use of all available resources.

Summary

Arc Olmsted is a strong parent movement that throughout its forty year history has worked effectively to influence public opinion and public that impact people with DD and their families. This movement has been able to achieve much, but not without significant effort. Certainly, the support of the United Way has been a key ingredient. In addition, volunteers have conducted drives of numerous types to secure the necessary funds to allow the Arc to carry out its mission.

The on-going efforts of many parents, self advocates, volunteers, and staff have all contributed to the success of the first forty years of the Arc of Olmsted.

September 16, 1995