Doblin: Parents of developmentally disabled adults aren't consumers


IT WAS CHRISTMAS 1989 or 1990; too much time has passed for me to be certain. My sister was living in Ridgewood, I in Detroit, and our parents were in an assisted-living complex in Lakeland, Fla. My sister, her then-husband and my niece had moved from Lakeland back north earlier that year.

My parents’ health was neither good nor bad at that time. My father had some ongoing issues; my mom was in the very early stages of dementia. My sister wanted a Currier & Ives Christmas and arranged for my parents to fly up to New Jersey. I drove in from Detroit.


Soon it became apparent that my mother’s mental state had deteriorated greatly in just a few months. She had good moments, but she was often confused by the strange surroundings and things went sour quickly. She could not remember where the bathrooms were or what was or was not a toilet. That was the last Christmas we had with our parents.

The experience has stayed with me because my mother’s anxiety in a strange setting was acute. She was still functioning enough to know that she was not functioning — a horrible thing to live with and a horrible thing to witness. What brings this story to mind is a quote by state Deputy Commissioner of Health and Human Services Dawn Apgar. She was speaking at a June 12 hearing regarding the relocation of developmentally disabled adults living in out-of-state facilities back to New Jersey. Many of these adults have spent most of their lives in these out-of-state places.

Apgar said, “We spend an extraordinary amount of time finding the right agency, the right location, the right setting to ensure that the transition works for the consumer.”

The families of adults with developmental disabilities are not looking for the best deal on an HD television nor are they shopping for cheap suits. They are not consumers and their loved ones are not products.

The trend today is to move people with developmental disabilities out of institutions and into group-home settings. This sounds good; it reminds me of the good intentions my sister had on that long-ago Christmas. Moving out-of-state residents back to New Jersey also sounds like a good idea. But because the state is not moving television sets but human beings, it is more complicated than arranging for shipping and delivery.

On Monday, my colleague Stephanie Akin reported on the family of David Zimmerman. The 57-year-old man with Down syndrome is also now experiencing dementia. He has lived 54 years in an out-out-state residential community and now the state wants to bring him back to New Jersey. His parents are concerned the change in environment will affect their son’s health.

The state has done a poor job of explaining the mission of “Return Home New Jersey” to parents and families. That’s the catchy name for the relocation program. It’s like “Stronger than the storm,” a slogan that looks good on a billboard and, like a billboard, has limited depth.

Parents do not object to group-home settings if they work for their child. Not every resident is the same and not all transition well. There has been too little clarity about what happens to a former resident of a developmental center if he or she cannot function in a group home. And if the center they know no longer exists – and by year’s end two will have closed in North Jersey — the transition into another center will be even more challenging.

There is an entire political movement based on getting government out of people’s lives and cutting away at the social safety nets that had helped parents – hard-working people – provide safe environments for their children. Ayn Rand has left the likes of Mother Teresa at the curb.

A few years back, I was having breakfast with a group of The Record’s subscribers in a diner. There were about 10 people of differing backgrounds, mixed among men and women. The conversation turned toward education costs, particularly the costs borne by taxpayers when a special-needs child moves into a school district. There was a robust debate until one woman said words to this effect:
“If parents can’t afford to take care of a severely handicapped child, they should abort it.”

We all were stunned by what was said. No parent should be forced to make such a decision. The larger societal costs for caring for special-needs children and for adults with developmental disabilities are small. There are only 700 adults with developmental disabilities living out of state.

The state’s purported goal is to make life better for these adults. If that is the case, then these adults have to been seen as individual human beings, not product, and their parents as parents, not consumers.

My mom did not get better. By the time of her death, she was no longer able to speak. Moving her from the nursing home she eventually lived in for many years was never an option; she appeared comfortable in her surroundings.

The parents of developmentally disabled adults are making noise because their children cannot form words. The state expects much from these adults living in out-of-state facilities. It expects men and women who may not be able to easily communicate to understand that being moved into a strange environment with different people is for their own good. That is a lot to ask of someone like David Zimmerman. That is a lot to ask of his family.

The slogan Return Home New Jersey is based on a false premise, that home for 700 developmentally disabled adults has to be in New Jersey. Home is where people love you, know you and care for you. Most of all, home is about families, not consumers.

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