New Jersey Jewish News
MetroWest New Jersey Feature Story
‘We are thinking about his life after our life’
When Ari Levinson was diagnosed with developmental disabilities at the age of two, his parents embarked on an aggressive course of special care and education that have made him a “success story” in the eyes of his parents.
Twenty-nine years later, Michael and his wife, Jackie, are, frankly, “starting to think about who is going to take care of our child when we are no longer here.”
As a result, they signed up to ensure that Ari’s future will be managed by Coordinated Care, a program jointly administered by the Jewish Family Service of MetroWest and the Jewish Community Foundation of MetroWest NJ.
Ari Levinson, now 31, lives with a roommate in a South Orange apartment. He commutes daily to his job as a clerk at the Veterans Administration Hospital in East Orange. He is an avid athlete who plays soccer, basketball, and hockey and competes as a tennis player in the Special Olympics.
He receives services from JESPY — an agency, like JFS, of United Jewish Communities of MetroWest NJ — which provides care and support to adults with special needs.
He also receives much love and attention from his parents — who live in nearby Livingston — and from his brother and sister who live in New York.
And yet, Michael Levinson felt that more provisions needed to be made for Ari’s future.
“Although his brother and sister have always been loving and devoted to Ari and have always said they will take care of Ari when we are no longer around…,” Michael said, he and his wife wondered if their other children will “have time between jobs and spouses and children to watch over Ari.”
In 2001, when the Levinsons learned about the Coordinated Care program, they felt they had found an answer that “sounded too good to be true,” said Michael.
“It is apparent to us that between everything our other kids have going, to have someone here locally to see Ari on a monthly basis if needed would be a huge help. They can lead their own lives and know that someone is here seeing Ari, advising him, prompting him to get things done. Everything that Ari should be doing is in the annual care plan we wrote up with a social worker from Jewish Family Service. It now makes the responsibility for taking care of Ari no longer a burden on our other son and daughter.”
Both Michael and Jackie Levinson are under 60 years old and to them, retirement seems to be many years down the road.
“Given that we can grow old gracefully, when my wife and I stop working, I can see having someone from JFS begin to meet with Ari a couple of times a year, just to get to know him.”
With care from JESPY, along with the care and affection Ari receives from his family, “now that we know Coordinated Care will be there for him, if everybody works together, he will have the best of all possible worlds,” said Ari’s father.
Michael described a possible situation if the JFS program were not available. “It would mean that the responsibility of taking care of Ari could become a burden. Let’s say he decides to retire in 30 years. Let’s say his health starts to fail. Let’s say he has to move to different housing. You have someone from Coordinated Care helping to advise him and his brother and sister of the options.”
Being the parents of a person with special needs has forced the Levinsons to confront many painful realities about their son’s life and their own.
“As young parents it is tough to buy life insurance. Then you see estate lawyers that specialize in setting up trusts for families with disabled or handicapped children. Then you start thinking about who is going to take care of your child when you are no longer there. It is one of the hardest experiences my wife and I ever went through,” Michael said.
“We are thinking about his life after our life. And that was extremely difficult and heart-wrenching. But we can go to sleep at night and know that he is going to be taken care of.”
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