by Johanna Ginsberg
NJJN Staff Writer

February 26, 2009

February marks the first-ever National Jewish Disability Awareness Month. To mark the occasion, NJJN is publishing a series of articles on special-needs families and programs. Last week: The WAE Center. This article is the last in the series.

At 55, with two grown children, Barry Feldman is beginning to worry about how he will manage as he ages. But unlike many of his peers, Barry also spends his time worrying about his older brother, Jay.

Jay, 59, is developmentally disabled. He lives in a group home supervised by Jewish Service for the Developmentally Disabled.

“Jay is going to be 60 years old — how is he going to be cared for as he gets older?” said Barry, an accountant who lives and works in Fairfield. His brother is among the older residents in the JSDD homes.

“Are they making arrangements somehow for a senior group home or a senior wing in Daughters of Israel or something where he would be comfortable?” asks Barry.

For the parents, siblings, or guardians of an aging person with special needs, there are plenty of concerns. They range from medical issues associated with aging, to financial planning, to transportation, to finding a home for a loved one who had depended on parents or relatives now too old to provide the care themselves.

“Aging is a complex phenomenon for the general population.  It becomes even more of a challenge in serving people with developmental disabilities,” said JSDD executive director Linda Press. 

Local agencies like hers, mostly begun in the last 25 years, are just beginning to confront the issues of an aging Baby Boomer generation.

For example, JESPY House, a Jewish-run agency designed to serve a high-functioning disabled population, has just 10-15 clients over age 50 but double that over 40. Assistant director Frank Bresnick pointed to medical, transportation, financial, and even work issues now emerging in this population.

“Aging has put a strain on our case managers, simply because of all the health issues,” he said. As residents age, “they need mammograms, colonoscopies, heart tests, stress tests. We spend a lot of time doing that.”

One specific issue he is seeing is diabetes. “It’s a result of the way they eat, and they don’t get enough exercise,” said Bresnick.

As Press explained, “When presented with a choice between a physical activity or a sedentary one, they may be more inclined to choose the latter. We all know that regular exercise and weight management are key to staving off age-related health issues.”

As a result, many agencies, including JESPY and JSDD (both partner agencies of the United Jewish Communities of MetroWest NJ) are encouraging clients to be more active. JSDD group homes all have exercise equipment and recreation directors; JESPY offers exercise programs to all its clients.

JESPY has started a day program for clients who are no longer working (or have never been able to work) in order to provide them a “busy, structured day,” according to Bresnick. The agency has a part-time nurse on staff that is helping to educate case managers about their aging clients, and Bresnick said JESPY is hoping to find the funds to be able to increase the hours.

Financial planning

The biggest issue at JESPY is often financial planning, according to Lois Rose, director of operations, since most of the services are paid for by client families. JESPY has become proactive on that front, she said, and now reaches out to parents and guardians to help them plan ahead.

Shirley Finkelstein of Fairfield is well aware that she has to plan for her son, David, 48. He works in food service at Columbia High School in Maplewood and at Canoe Brook Country Club over the summer; he lives in his own South Orange apartment, but is dependent financially on his aging parents.

Shirley and her husband Herbert have just updated their will, ensuring finances for David’s future, and have purchased a burial plot for him next to their own. She is relying on her two other sons, both over 50 and living in Livingston and Wayne, to care for David when she and Herbert no longer can.

But the Finkelsteins have already set up a trust, just in case.

David has spent much of his time at JESPY House since he became a client there 16 years ago. “If we hadn’t found JESPY, we would worry terribly,” said his mother. Like Barry Feldman, the Finkelsteins also look ahead and are optimistic that perhaps by the time David needs it, “JESPY may have senior living.”

A place for Jay

For many families, a parent’s illness or death brings a separate crisis: how to care for the disabled person who had depended on the parent’s care.

Jay Feldman’s parents took care of him for his whole life, first in West Orange, then in Roseland, and then in Florida. But when Jay’s mother fell ill 15 years ago, Barry began to worry.

“Growing up with someone who is developmentally disabled is really hard. It’s something I knew I couldn’t do in the framework of my own home,” Barry acknowledges.

Fortunately, his parents had put Jay on the waiting list of the New Jersey Division of Developmental Disabilities, where his name sat for 10 years. Three years before his mother died, they received a letter accepting him into their care. That meant money attached to his name for life, provided by the government, that would cover the expense of living in a group home. Barry called the letter “a huge relief.” (Their father, 87, still lives in Florida, but has mild dementia.)

And Barry knew what would happen if his brother’s name didn’t come off the list before his mother died: emergency housing — meaning a boarding home or a foster home.

“You don’t know where they will end up,” said Barry.

Instead, Barry was able to choose JSDD for his brother.

Today, Jay lives in a five-bedroom kosher group home in Boonton with four other men. He’s there temporarily, moving from a group home in Caldwell that is being closed to his own JSSD-run condominium in West Orange that is not quite ready.

Run by JSDD, the home is on a quiet suburban block with front and back yards, an exercise room in the basement, a large family area and kitchen, and large individual bedroom-bathroom suites for the residents.

At least two staff people are on duty most of the day, and one overnight.

Jay’s favorite place in the house is his own bedroom, he tells a recent visitor. A poster from a recent birthday graces the side table next to his bed. He often watches sports or the news on television. He chats happily about his brother and his brother’s wife, whose photos are in front of the poster. He grows quiet as he looks at the photo of his mother, and chats freely about his father.

He enjoys kibitzing with manager Matthew Holmes, who likes to call him “knucklehead,” with affection. “He’ll be missed when he moves,” said Holmes, 38, who calls Feldman the “father” of the house. “He’s a good guy. I love him,” said Holmes.

Barry believes Jay’s quality of life has improved dramatically since he moved into the JSDD group homes.

“When he lived with my parents he was very isolated. He had no socialization with anyone. He just mimicked my parents’ life, where he would go out to dinner, come home, watch television, play his records or CDs — he has a huge record collection still in Florida,” said Barry. “Now he’s got interaction with other people with developmental disabilities; he’s got a large staff.”

And the residents are kept busy with movies, ballgames, and concerts. And work — Jay has worked all his adult life in sheltered workshops, and works three days a week at Employment Horizons in Cedar Knolls. He spends two days each week at JSDD’s WAE (Wellness, Arts & Enrichment) Center.

Emerging options

The condominium in West Orange he will move into is part of a new DDD project known as Real Life Choices. Rather than living in a group home selected by JSDD, he will help choose where to live, who his staff will be, and what programs he wants to participate in. JSDD purchased the condo and is in the process of refurbishing it.

Although families have voiced their hope for group homes geared specifically for individuals with special needs who are aging, administrators offer a different vision. JESPY’s Bresnick, for example, said he thought JESPY might be able to tap independent and assisted living residences that are already options offered by the area’s Jewish Community Housing Corporation, or utilize the Daughters of Israel geriatric center if necessary, but without having the separate wing Jay’s brother suggested. JSDD is looking ahead as it develops new homes.

For example, the home Jay will move into in West Orange is a three-bedroom ranch-style house. They have chosen flooring that is compatible with wheelchair use, and designed the space with other assistance devices in mind. There are no tubs, only walk-in showers.

Still, Press acknowledged that aging may present a problem in already existing multi-level JSDD homes, such as the one in Millburn. “We may have to juggle bedrooms or find another place” as our clients age, she said.

As for other issues, JSDD already has 24-hour staffing and care. They also have a nurse on staff. Still, said Press, “Health-care professionals who specialize in serving people with developmental disabilities are rare and there is a growing need to establish additional resources.”

So far, Press said her agency focuses on keeping clients as independent as possible. Among these is 75-year-old Ben, who lives in a JSDD Caldwell home. He is severely disabled, barely verbal, but is still able to keep relatively active. He attends the WAE Center regularly, where, on a recent day, he received encouragement and support for interacting, even if that meant walking across a conversation circle to grab the hand of a favorite staff person.

Jay and David are among the lucky ones. David has a large extended family and two brothers to care for him and parents who have planned for him financially.

Barry remains involved in Jay’s life, if from behind the scenes — he serves as treasurer on JSDD’s board.

“I see him fairly often. I take him out to dinner, I call. I take him to Florida to see my father,” said Barry. “I’m not involved in his day-to-day life. My feeling is, I guess, like relationships with every other sibling. You get together for holidays — he’s always with us for holidays. You talk on the phone…I just make sure he’s well taken of and he’s relatively happy.”

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