Parents Who Said No

“Thousands of parents (in the 1950s) were willing to contemplate saying goodbye forever to their small children—for that is what institutionalization truly entailed—only because their doctors were urging them to do so. Virtually all physicians immediately and insistently advised the parents to put the child away.”
—from “The Kennedy Family and the Story of Mental Retardation”

As the quote above says, it wasn’t that long ago that parents of children with diagnosis of mental retardation (now called intellectual disability), autism and cerebral palsy, as well as other special needs, were advised by the medical experts to place their son or daughter in at state hospital or similar institution. The conventional wisdom at the time was that placement outside of the home at a very young age was better for the child and the rest of the family. But there were those who refused to go along and said no to institutionalization.

Fast forward to today, and many of those adults with developmental disabilities are now in their 50s and 60s, living longer than anyone thought possible, and the majority (75-80%) are still living in the homes of their parents or siblings. As their parents, now in their 70s and 80s, face their own physical and cognitive challenges, and of course, mortality, the number of older adults with developmental disabilities without a close family caregiver will continue to increase.

This intersection of aging and developmental disability has been the focus of a project I’ve been working on as a consultant to the Bet Tzedek Legal Services, funded through a three-year grant by the Unihealth Foundation (it ends June 2014), and it’s been a fascinating and also unsettling experience to realize that those very parents who refused to go along with the inhumane advice of their own physicians now find themselves in their sunset years with little help on how to ensure a good future for their adult child with developmental disabilities.

Some of the adults with developmental disabilities became part of the CA regional center system, with case management and other assistance, while others never applied, preferring to rely on close family members for support.

Family caregivers of older adults with intellectual/developmental disabilities are invited to an upcoming free conference called, “Caring x2” on Sunday, November 10th, from 10 am-3 pm at the Dorothy Chandler Pavilion of The Music Center. Parking is $9 and reservations are mandatory. For more information go to here. I hope to see many Los Angeles-area parents and siblings at this timely, educational and inspirational conference.