Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

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Saturday, January 16, 2010


I am guardian of my sister, Kathy, who entered my life as a brain injured newborn. I was 5 at the time. She was placed in my arms within the first hour after she arrived home. From then on, I thought she was mine.

Doctors advised my parents to "put the baby away and forget about her." That was never an option. Kathy would stay at home in our family. Period. In order to assure resources for Kathy, mother became very active, organizing parents and raising funds on behalf of children with cerebral palsy and mental retardation. At that time few services were available and public support programs were not even on the horizon.

Blind and unresponsive, Kathy met the "clinical" definition of a "vegetable" until she was 13 months old, when brain surgery, sub-dural drainage, liberated her to begin to engage with us and life. From then on, she pushed to make progress, therapy was found for her, and we all rallied to help her.

Helping Kathy learn was the theme of our lives. So much so that, as an adult, when an education application required an autobiography, my first attempt yielded only a list of Kathy's developmental accomplishments! A second try required me to rack my brain to dredge up the faintest memories of my own life markers.

When I was 13 and Kathy was 8, medical bills that could not be paid despite a 2 parent income, 24-7 care, and other stresses finally added up to divorce. One parent could not provide the 24-7 level care that had barely been accomplished by two, so, Mom tried live-in help, but was unable to find people who could handle an active, but physically unstable youth who had grand mal seizures, required constant, protective attention, medications and therapeutic support. Very few options were available for out-of-home placement, but she finally placed Kathy, during the work week, with a wonderful woman who took care of children with mental retardation in her home. We brought her home on weekends, and for the most part, I took care of her. After a time, though, the caregiver grew concerned that Kathy might be injured by the other, more mobile children, and, so, asked Mom to find another placement. She did, but it did not work out well at all. Kathy was neglected and abused; and so, after hospitalization, Mom brought her traumatized daughter back home to live. Kathy had been through so much, she cried and laughed uncontrollably & almost constantly.

By this time, I was away at nursing school. Mother, now remarried with a baby, had been able to hire a care-giver to help her. But her new husband had a heart attack, and his doctor advised her that he would die if the stress at home did not abate. Desperate, she talked a nursing home administrator into accepting Kathy; but they were not licensed to provide the level of care she needed. So, finally, she was forced to reconsider her vow never to place Kathy in an "institution." There were just 2 problems:
1. Admissions to the "institutions" were closed. 2. The supports Kathy needed in order to sustain the skills she had mastered were not available in Washington State's institutions. Still, she had to do something to save her husband's life; and Kathy had to have care. Out of other options, Mother prevailed on friends who knew the governor and his wife. With the governor's intervention, Kathy was admitted Fircrest.

The deal was done by the time I graduated. It was a nightmare, really. If RHCs of today were the same as Fircrest was, then, I would support closing them all.

I got an apartment and brought Kathy home to stay at Christmas. I thought if it worked out, I would find a way to keep her there with me. However, without the support she needed, she had already lost the skills that would enable me to care for her. I had been used to her walking and getting on and off the toilet with minimal help and being able to stay in bed without falling out. She had lost those abilities, and, moreover, without having been able to use her body, she was stiff and spastic, as I had never known her to be. I was devastated by my inability to manage her safely. Completely disillusioned, I took her back. I felt beaten and I could not fathom what else to do. It felt as if I was abandoning her. I am sure it felt that way to her, too. On one level, I was.

Fortunately, Fircrest improved. The Federal law, "Title Nineteen" was enacted: In exchange for improving conditions, providing programs and meeting safety, environmental and therapeutic program standards which were raised every year, matching Federal funds were provided to the state for the support of residents. Literally, if gradually, Title Nineteen transformed "institutions" from minimal-care-warehouses into exemplary, comprehensive care & resource centers, the residential habilitation centers (RHCs) of today. They are funded and focused for individually tailored support. And, today, as then, Federal audits ensure that standards are being met.

Kathy has never regained all of the skills she lost, but she has come a very long way back, and she is happy and comfortable. Remarkably, with the excellent support she is provided, she is still growing, recovering and learning at age 61.