"There is no one with a crystal ball."
By Suzanne Franklin, Director of HIAS
Rani loves action movies, Japanese animated cartoons and “The Avengers”. In her brief 20 years Rani also knows that she is different from most others her age.
But the reality of being a young adult with special needs can feel overwhelming for Rani, and her parents Patti and Harris Goldenberg.
Rani has had difficulty with learning, and her disabilities have impacted her speech and gross motor skills. Her growing awareness of her limitations has made her feel anxious and awkward and sometimes depressed.
Sadly, Illinois ranks last in the nation for funding of community based services to people with disabilities. And that deeply troubles Rani’s parents who know that at age 22, Rani will “hit the cliff” where most of her publically funded services will end and so will her schooling.
After graduating from Deerfield High School last year, Rani, because of the lack of resources in the Chicago land area, has been attending a post high school transition program in downstate Illinois. Learning about this program and other crucial community resources were born out of the close relationship they have with her occupational therapist and supportive case manager.
And these central life links that helped the Goldenberg family feel connected and cared for will be impacted by the “cliff”. Rani will need to return home this June. And Patti and Harris are scared and uncertain. They feel the everyday burden of planning for her future - will there be enough money to take care of her, what will their own old age be like, and what will her old age be like?
“I worry all the time,” says Patti. “I can’t pull back. I worry about my child’s happiness. I am like every other parent, but because of her challenges I know it will be hard for my child to find fulfillment and a unique place in this uncertain world.”
That reality helps motivate Patti and Harris to work feverishly with other families to build a future for their children. They are part of a growing group of committed Jewish families coming together with Jewish Child & Family Services, Jewish Federation of Metropolitan Chicago, Keshet, Jewish Vocational Services and the Jewish Community Centers to work on creating a model of supported community living for people with intellectual/developmental disabilities (IDD). They are hungry to address the needs of adults and young adults aging out of their school years in ways that are inclusive, sustainable and within a Jewish context.
They dream of an apartment or small home with roommates to pitch in and learn from each other, with skilled staff helping them manage daily living. They dream of a finding a manageable job for their loved one to go to where they feel they contribute to their independence. They dream of having their friends and family near.
Harris, who worries even more than Patti, feels strongly that the Jewish community must respond to this growing community need. He says it must act out of its religious and moral commitments to fellow Jews.
“I want to be where my Jewish family and community are and I want my child to feel safe and cared for, now and in the future,” he says.
In spite of all the challenges and concerns about the future, the family treasures the overwhelming joy Rani brings to their lives. “She is a perpetual source of sweetness and affection,” says Patti.
“Rani reminds us of what’s important in life”.
This story was collected as part of the JCFS Anthology Project: Connecting through the power of story.
Feburary is Jewish Disabilities Awareness Month.
Ask the question: How do Jewish congregations, agencies, organizations and schools in your community welcome people with disabilities? Link here for a resource guide with 50+ programming and action ideas! (and check out the Supported Community Living Initiative to see what's happening locally.)