Frontline Initiative

Being the younger sister of a person with a developmental disability, someone who relies on outside services and supports, has been an interesting and often frustrating journey. As my brother’s guardian, I have frequent opportunities to advocate on his behalf. Since I also work in the field of residential services for people with mental retardation, I often find myself wishing I didn’t know the what the possibilities are or how much better it could be. It’s hard to settle for things that most of us take for granted in our lives – things like being able to make choices or being free from abuse and neglect. My brother’s story reminds us that these things are more common than we’d like to think.

I’m amazed at the series of injustices he’s had to endure in his thirty-three years of life. In addition, I must mention I didn’t always live with or even near my brother, so what I know is probably only a small part of what his real experiences have been.

My brother was first institutionalized while my father served a tour of duty in the military in Hawaii. Not once, but twice, he was allowed to suffer sun stroke and heat exhaustion at the “special school” he attended. Because my parents felt the school couldn’t safely provide services to my brother at that time, he was sent to live in a state institution in Wyoming. This state was chosen because my father’s parents lived there and they were eager to provide my brother with the support that he would need while the rest of us concluded our stay in Hawaii. While in Wyoming, the “counselors⁄ teachers” at the state facility documented him as having A Sister Relates Her Brother’s Story of Abuse Family Perspective great hygiene but being “hyperactive,” “unmotivated,” and “lazy.” I’ve known other eight-year-olds without disabilities who had the same characteristics, but they were seen as normal. The strongly negative adjectives used to describe him gave me a feeling for how he must have been treated. When my brother returned home from the institution, most of his belongings were missing and he was terrified that people would steal his food. I’ve heard other in the field casually refer to this as “institutional behavior,” but I can sympathize with the outbursts and frustration that comes from living through these kinds of experiences.

When my brother was a teenager, our mother suffered health problems and again he was institutionalized in a large facility in Minnesota. Again, his food was taken despite his attempts to eat as fast as he could. On two separate occasions he was diagnosed as malnourished, and his personal items continually disappeared. My parents would complain, but the situation never improved – that’s just the way things were.

Later, my brother was moved to a private, but still large facility closer to where the family was living. Again, his food and belongings were stolen. Because he didn’t receive the dental care he needed, he nearly lost his teeth. At this facility, dental care came in the form of a truck that pulled up into the parking lot. The residents would be ushered out to the truck to have work done. As guardian, I had to force the issue to obtain a community dentist. I felt strongly that my brother’s dental care was in crisis and I felt the need to push for aggressive care. For the first time in my role as his guardian, I was anxious about my brother’s quality of care. This situation showed me just how vulnerable he was.

Over two years ago, he moved, again. This time, into a small group home with three other people. Our family was so excited, and we had great expectations that he would receive higher quality, more personalized care, and would be able to live with less fear and more control. Unfortunately, our excitement was quickly deflated. Within the first year, two separate incidences of abuse against my brother were perpetrated by staff. Both persons involved in these cases subsequently quit their positions. I’ve had to advocate for my brother to receive his mail and use the phone as he desires, as opposed to “earning” or using the mail and phone at the whim of the staff who are “in control."

I’ve discussed my concerns about dignity and respect with the direct care workers and the supervisors at the home and at his work site. I know things can be better. It’s difficult to be a family member and know that the person I love isn’t receiving the care he should be. I feel he isn’t always treated with the respect and dignity he deserves because people entrusted to provide his services don’t like him. I was recently told by the supervisor of his home that I didn’t “know what it’s like to have to deal with him on a daily basis.” That was telling. While I don’t feel the system is all bad, there’s a way to go. Unfortunately, my brother’s journey probably isn’t too unlike those of others who receive services.