Stories about: advocacy for people with disabilities

Easing their burden: How we can do so much more for children with disabilities

Recently, the Boston Globe did a series on abuses of Social Security payments to children with mental health problems. Reading about the families in the series, and the challenges they face, made me think about a woman named Olga who was part of our family for a few months in 1996.

Olga was a home health aide, a big, soft woman with a soothing sing-song voice and a peaceful smile. She came every weekday morning to help care for our severely disabled baby, Aidan. Aidan was born with lissencephaly, a major brain malformation. While we hauled 5-year-old Michaela and 3-year-old Zack out of bed and got breakfast into them and clothes onto them, she held Aidan and fed him, slowly and carefully, stopping occasionally to suction his mouth if he spit up. While we put Michaela and Zack in the car and took them to preschool, and ran to the grocery store or to the drug store to pick up medications, Olga washed Aidan and dressed him. While we picked up toys and unloaded and loaded the dishwasher and washed and folded laundry, Olga held Aidan and talked to him, comforting him through seizures, easing him into sleep. She stayed until we picked Michaela and Zack up from their half-day program, and then she kissed Aidan goodbye and left us until the next day.

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MA legislators ban the 'R-word' from state laws

By Brian Skotko, MD, MPP, a specialist in Children’s Hospital Boston’s Down Syndrome Program

Brian Skotko, MD, MPP
Brian Skotko, MD, MPP

Let’s applaud together. After decades of advocacy, two words are now banished from our state laws. Last week, Governor Deval Patrick signed legislation that effectively replaced every use of the words “mental retardation” with “intellectual disabilities or disability” in all Massachusetts’s laws. This comes nearly one year after the Department of Mental Retardation was renamed the Department of Developmental Services.

So, what’s the big deal? For years, our society has turned what was once a simple medical term into an epithet of ridicule and bigotry.

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