Jim Benson's Journey from Family Home to a Home of His Own
By His Father
Our son Jim lived in our St. Paul, Minnesota, home for twenty-five years. As we grew older and Jim became an adult, it became apparent that we should seek a stable residence he could call home and that would remain his home after we are gone. In our first attempt to meet these goals, Jim moved into a small community group home. He lived there for four years. During the fourth year, he experienced severe injuries that forced him to undergo several operations on his hip; subsequently he spent three years in a nursing home. We searched for a new home for Jim during his stay in the nursing home but the search was made difficult because the state of Minnesota had declared a moratorium on building new group homes. Existing group homes had waiting lists that stretched out to years. In reality, it was because there were no other options that we began working closely with advocacy organizations and our local government to find a path enabling Jim to live in a home of his own.
Each step of the process was filled with uncertainties. The process was not only new to us, but, also, to almost everyone else. Funding had to be found for support services, household expenses, and real estate costs. There were complex questions about possible roommates and about their opportunities for control over their home if, in fact, Jim was the landlord. Related issues that were new to us put us on hold until the county reached a decision. Finally, with county approvals, we looked at over fifty properties before finding Jim's new house.
At this point, we naively thought our problems were behind us. Our first disillusionment appeared when it became apparent that the organization that provided staff for the home viewed it as just another group home in which where they made the decisions and didn't share information with us as a family - we were an integral part of Jim's life and support team. We felt that they considered their staff's stability more important than Jim's welfare or quality of life. In time, we concluded that the agency or its staff was incompetent and, with the county's approval, severed relations with this agency. Looking back, we see the delicate relationship and demanding expectations one holds for an agency when you expect assistance in making a house a home.
The second organization we selected improved the care and support given and was more open to sharing information with us as a family and members of the team. Things went well for a year. This organization experienced substantial growth, which resulted in layers of supervisory administration. Along with this we felt that the understanding of Jim's needs as well as those of the "home" were so filtered that support, care, and mutual understanding suffered greatly. And so two years after starting with the second provider, we changed to a third, the current provider of staff. This time we chose a much smaller organization. Right from the start, they showed competence and real understanding of the young people residing in the home. More than three years have passed and we are very grateful each day for the association that we've established and fostered with this organization.
Five years later, a well-coordinated team of parents, provider staff, doctors, dentists, day-activity staff, and social workers has closely monitored Jim's life. His progress has been made possible by the stability and close-working harmony of Jim's team. For instance, Jim's neurologist left the St. Paul area and relocated to Minneapolis. Provider staff were about to accept the next available St. Paul neurologist, but we, as his parents, had a long working relationship with the departing neurologist and felt that his credentials as an internationally respected leader in his work, plus his intimate knowledge of Jim, warranted the special effort needed to maintain his ties with Jim. The result was that Jim continued to make progress with increasing momentum.
Another example of the quality of the relationship was when Jim's feet were not getting enough blood circulation. The issue was brought to the attention of the team by us, and innovative solutions were put into practice by the provider staff, day-activity staff, and Jim's doctors.
Jim has learned to relax and enjoy a sense of joy and serenity in his own home. He needs and enjoys his space and has it now. The lawns give him a view from the living-room window. The roomy backyard offers peace with the beauty of flowers, trees, and bushes. Staff initiative has created activities of interest and "therapy" by building a walking platform, a trampoline routine, arm pulleys, even a floor-crawling exercise.
There are close human working relationships among all members of the team, including his doctors, staff at Jim's home, staff at the developmental activity center, the county social worker, and his family. Jim has grown through interactions with peers in the community, working in a supported workshop, and going to the circus, musicals, and dances. Above all, he has close ties with his family; he visits at our house every weekend, and we feel welcome to visit him at his house. The care of his neighbors, family, provider agency, and dedicated staff give us reason to believe that Jim will grow socially and achieve his full potential as a community member in the years to come.
For family members who wish to sustain an active commitment and contribution to the lives of their adult children after they leave home, helping them secure homes of their own not only permits but demands it. The energy and dedication this requires shouldn't be underestimated, but neither should the rewards.