It is a rare day that I do not hear another success story of someone who has successfully transitioned from a state institution into the community. The men and women whose stories I have shared with you this week show us the possibilities of a failed system that is now truly supporting individuals in the community. I am constantly asking myself why, why, why…have so many men and women been unjustly institutionalized???
Today I want to share with you some more success stories.
The first is a video of Michael, Dennie and Ron, all former residents at the Jacksonville Developmental Center. They are now living a full life in the community in Western Illinois. Why were they institutionalized???
The second is Katherine’s testimony before the Senate and House Appropriations Committee about her sister’s life in the community after living in a state institution for sixty-three years. Katherine’s and Margaret’s story are one of the most compelling stories I have ever heard. You can also view their Going Home Video. While you are looking at this video, please “like” the Going Home Page!
My name is Katherine Doering Hamann. I am the Director of the Family Transition Project for The Arc of Illinois.
My sister, Margaret Doering, was committed to Dixon State School when she was two years old. It was 1945. She had been diagnosed as profoundly developmentally disabled and was nonverbal. Our parents accepted the advice of their doctors that she would need institutional care for the rest of her life, which was liable to be short. They didn’t expect her to survive puberty. She was declared a ward of the state in court and escorted to Dixon by a uniformed deputy sheriff and probation officer under a “Warrant of Commitment.”
Margaret’s first psychological assessment at Dixon, dated 6.1.45, says, “Margaret pays no attention to her surroundings, just sucks her thumb. She is untidy and has to be fed.” She was classified as an “imbecile.” Her repetitive behavior – twirling, rocking – suggests autism, about which little was known at the time. Her health worsened dramatically at Dixon. Along with the standard childhood illnesses she experienced many less common like repeated amoebic dysentery and hepatitis. She became a hepatitis carrier and developed a serious liver condition that still needs monitoring. She lost most of her teeth, due to poor dental care. Margaret spent much of her first two years at Dixon in the infirmary in a closed-in crib that amounted to a cage. Her regular home was a “cottage,” with over 100 other children. In 1949 her broken left arm was the subject of an investigation by the Assistant Deputy Director of the Medical and Surgical Service. A response from the Superintendent of Dixon refers to “our critically overcrowded Nursery which now houses 121 patients (Public Health Standards would allow for 47).”
Years of progress notes describe Margaret’s sleeplessness and constant motion. A 1968 report is typical. “She rocks and hums continuously, and must be tied in bed, otherwise she will not stay there.” She was given phenobarbitol, sodium amytal, stellazine, mellaril, thorazine, seconal, dalmane, vesprin, chloral hydrate, phenergan, imipramine and tofranil, among others, from a very young age. She had difficulties with eating and toileting, although she had not had a problem with either when she lived at home. One to one supervision at mealtime, restraint with a sheet, mitts, a “biting helmet,” and being placed “behind the bench” are some of the other behavioral restrictions mentioned in her records.
Margaret was the firstborn child of four in our family and because our doctors discouraged even the knowledge of our sister, we didn’t meet until we were adults. I became her guardian at the age of twenty-seven. She was thirty-seven. One of my first tasks was to find her a new home because Dixon was closing. Howe in Tinley Park seemed the logical choice because it was closer to her family and was a major improvement for her. She lived in a small kind of townhouse with only nine or ten other women. She moved in 1983. Daytime activities were not all I’d been led to believe, but eventually she attended a community workshop. Still, there were many disappointments. Margaret was often agitated and restless, especially after the long ride home from workshop. Residents moved in and out of her home. The constant daily comings and goings of staff gave the house a bus station atmosphere. Sometimes I’d come to visit and staff on duty would answer my questions with, “I’m sorry but I’m pulled staff. I don’t know these people.” There was a lot of drama with housemates who were not well suited to each other and had drastically different needs. Little things that were important to Margaret – getting enough water to drink, taking walks, music, holding small objects, rocking in her rocker – didn’t seem to be a priority to anyone else. Her personal belongings disappeared. Once I gave her a new coat and it was stolen the next day.
Over the years her team discussed possible opportunities for community living. Places I checked out didn’t look like an improvement – facilities in office and industrial parks that seemed more institutional and isolated than Howe.
Although I was often frustrated by the situation in Margaret’s home, she was safe and clean. I thought it was the best we could do. Still, I couldn’t forget the conversation I had with a young cousin who was studying to be a Special Education teacher. She said, “So this is it? She has to live there for the rest of her life?” At the time I was hurt, but her questions burned a hole in my heart.
Five years ago, Margaret moved to a CILA home. The improvement for her is immense. At her first planning meeting they asked me what she might like to do for fun. No one had ever asked that before. But, more importantly, they have learned from Margaret her likes and dislikes. They support her interest in music, walk with her in the mall if the weather is inclement, take her to the pet store where they discovered that she enjoys watching the birds. She goes to a “bridge program” every day for retired people where she has her own rocking chair. At home, she enjoys home cooked meals from her own kitchen. Margaret has her own room with nice furniture, a closet full of clothes and baskets of the small stuffed animals she loves. She can put something down and come back and pick it up when she wants to. This is priceless for her.
On the whole, Margaret is calmer and happier than I’ve ever known her to be. She interacts with people or not as she wishes. She has developed a close friendship with one particular housemate and sometimes they just sit and hold hands. The staff who work with her are alert to changes that they believe indicate discomfort and address them with medical staff as needed. After 63 years of institutional living, Margaret finally has a home – where she is known and valued.
Margaret’s journey and mine have become intertwined. I volunteered at Howe Center when she lived there, serving on many committees, including serving as chair of the guardian group and the human rights committee. I eventually worked at Howe as a state employee for eleven years. Now I head up the Family Transition Project for the Arc of Illinois, through the Life Span grant. What I do is the direct result of Margaret’s and my experiences. I meet with families whose loved ones have successfully transitioned from state operated centers to learn their stories and I share these successes and Margaret’s story with families who are just beginning the transition process. In the last few years I’ve met over 100 families whose loved ones have a wide variety of challenges. Families understand each other in a way that no professional can share. However we differ, we’ve all experienced heartaches and disappointments, failures and broken promises. We all want the best for our dear ones . Together I believe that we can discover community choices that are specific to their needs and offer a fuller life. We don’t have to accept second best.
Katherine D. Hamann
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423