Opinion: My Son and the City

 From NYTimes.com's Opinionater by Marie Myung-OK Lee


When my husband and I began mentioning to friends and family that we were thinking about moving from Providence, R.I., to New York City, everyone’s first question was not about what career opportunities awaited us or which borough we wanted to live in, but: “What about J?”
J, our 12-year-old son, has serious medical challenges and developmental disabilities, autism among them. He’s prone to violent tantrums that can be triggered by something as simple as catching sight of a dog 100 feet away, which makes our everyday life often messy, always unpredictable. But in Providence, we had the help of in-home aides and respite care provided by Medicaid, as well as a close-knit group of friends. Whenever we had an emergency, there were plenty of people to call. Whenever J had a meltdown, we could just jump in the car and go home. What would this scenario look like in New York?

Because of Katie, Children with Severe Disabilities Are Living at Home

From The New York Times Motherlode blog, a post by Marie Myung-Ok Lee, a novelist and teaches creative writing at Brown University. 

Katie Beckett died last month at age 34. Most Americans don’t know who she is. But as a parent of a child with disabilities, her name is as familiar as my own child’s. Because of the legislation that bears her name, hundreds of thousands of children, including my own, are able to be at home with their families instead of being institutionalized.
At 5 months of age, encephalitis left Katie Beckett spending most of her early years in the hospital. When she was 3, doctors cleared her to go home with proper supports — she still needed to be on a respirator 12 hours a day. Her insurance had been exhausted, and Medicaid refused to pay for her care unless it was done in the hospital -- even though treatment could be administered at home at one-sixth the cost.