By Patricia E. Bauer

Kids whose brothers and sisters have Down syndrome — or any disability, for that matter — often find themselves interpreting their sibling to the world.

Yet how much do they really know about their brother or sister’s condition? And how do they cope with the personal questions, unwanted stares, and complicated emotions that often seem to go with the territory?

Co-authors Brian G. Skotko and Susan P. Levine have come up with some answers in their new book, “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.”

Skotko, a doctor at Children’s Hospital Boston whose sister has Down syndrome, and Levine, a social worker with Family Resource Associates Inc. in New Jersey, have been conducting workshops for brothers and sisters of people with Down syndrome for the past ten years. Along the way, they’ve been collecting siblings’ thorniest questions and developing thoughtful and knowledgeable answers for them.

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“Why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?“

– Curtis L. Decker

By Patricia E. Bauer

The news reports started coming out of Texas yesterday afternoon: Vulnerable men with intellectual disabilities were allegedly used and abused for their caretakers’ entertainment. Law enforcement authorities say a group of employees at the Corpus Christi State School in Texas repeatedly staged a “fight club,” compelling their charges to physically battle with one another.

The investigation began when someone gave authorities a cellphone that contained videos of the alleged abuse. As of now, seven state employees have been suspended from their jobs and the state has halted admissions to the campus.

Searching for background on the emerging scandal, we caught up with Curtis L. Decker. He is executive director of the National Disability Rights Network, the nation’s largest non-governmental enforcer of disability rights.  Decker is familiar with conditions in Texas’ institutions for people with intellectual disabilities because the NDRN has been investigating conditions and working with residents and their families for several years.

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Q:. Based on your experience and observations, what can you tell us about what may be happening inside the institutions for people with intellectual and developmental disabilities in Texas?

Curtis L. Decker: There has been an absolutely demonstrated and documented series of abuse and neglect in these facilities, eight hundred staff fired over the last several years, numerous deaths, lots of complaints and lots of documentation of abuse and neglect. There has been nothing like this particular story, but why would we be shocked something like this could be happening in these facilities when there’s been this long history of abuse?

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