Transitioning Developmentally Disabled to Community Living

By Lauren Wanko

As dinner’s being served, Rose and John Gallaher visit their 50-year-old daughter Maureen at her home — a home they’re grateful to have found.

“It feels probably almost indescribable because as you’re getting older, you worry more and more about what will happen to her,” Rose said.

Maureen was diagnosed with severe mental retardation when she 4 years old. Two years later she moved to the Vineland Developmental Center where she lived until 2012. But the Gallahers wanted Maureen to live closer to their Ocean County home and get more individualized attention in a group home within the community.

“When we first heard there was such a thing available, it was wonderful, but at the same time after 40 years we had no idea how Maureen would handle the change,” Rose said.

“It was actually a really frustrating experience because Maureen was put on a waiting list,” John said.

Then the Gallahers met David Wright and Natalie Trump of Rutgers University’s Community Living Education Project or CLEP.

“It was the best thing because we were going to the CLEP meetings but still didn’t really understand what was an agency, how do they provide help,” Rose said.

“Our main focus is to help understand people with developmental disabilities and their families understand what community living is like, especially transitioning from an institution setting or even from a home,” Wright said.

“We’re like mentors. We mentor families,” Trump said.

CLEP specialists educate families to make informed decisions about community living — everything from group homes to apartments or condos — through learning events, information packets, DVDs and on-site visits.

“We show families examples of group homes. We show them what it could be like,” said Trump.

Trump says there’s lots of misconceptions about community living.

“There’s many more new types of supports available now in the community then there were many, many years ago,” Trump said.

CLEP, contracted by the state Division of Developmental Disabilities, connects families with some of the more than 200 agencies that provide services to those with developmental disabilities like The Open Door of New Jersey. After a few visits, the Gallahers knew this would be a good fit for their daughter.

Before Maureen moved into this home, a transition period was set up to make sure she could adapt. She by first going out to dinner with her two housemates, then she spent the day here, followed by an overnight. At that point her parents decided she seemed comfortable enough to move in.

“Institutional living is what it is but here it’s a home and feels like it. We feel this is her home,” John said.

“The goal is to have a person age in place, not having them move several times,” said Wright.

There’s around the clock care here. Maureen has her own bedroom, goes on lots of field trips and to an adult day program every weekday.

“From the time she’s been sick, she’s just been a name or a building number. Maureen is totally incapable of helping herself but they’ve make it part of her life here, changed that all around,” Rose said.

“We don’t want them to feel discriminated at all. We want that stereotype that these consumers can’t manage in the community, we want it to go away,” said Estelle Perry of The Open Door of New Jersey.

The Gallahers noticed Maureen’s improved since she’s moved.

“When we visit with Maureen, there is much more of a response. Eye contact is something that we treasure,” John said.

As much as the Gallahers treasure this visit, it doesn’t last long because Maureen’s off to her weekly bowling night.