When parents have a child with special needs, they enter a new world of education and therapies. What they also encounter is a myriad of complex government educational, regulatory and financial agencies, which often differ from city to city and from state to state. And just when parents become “experts” in navigating the system for the services their child needs to thrive, the child with special needs becomes an adult with special needs and the parents and families are thrust into an entirely new world—with all funding and services available to their child grinding to a halt when their child turns 21.
All parents worry about what will become of their children as they transition to adulthood—i.e., where will they live, how will they support themselves—but for parents of children with special needs, there is a realization that their child will never be able to live completely independently and will never be able to support themselves. Among the most complex issues for parents of these adults with special needs is what long-term living options are or will be available to their children, so that it doesn’t become a crisis when the parents are no longer able to care for their adult child or if the parents pass away. The Bayit Association was formed by a group of parents in Bergen County to create shomer Shabbat group homes for Orthodox men and women with special needs in Northern New Jersey to address these concerns.
The Bayit Association will soon begin work on its first home, a house in Teaneck that will house four young men. More are planned. Making this happen takes funding on two levels: The Bayit Association needs funding to buy and renovate properties, as well as to assist parents to access government funding to support daily living in such homes.
Board members Bassie Taubes and Adam Chill are reaching out to help interested families understand what they need to know about available government funding. At a webinar last week for about 25 parents with adult, or soon-to-be adult children with special needs, Chill and Taubes explained how funding levels are categorized into tiers, and what parents should do to make sure their children are assessed for funding at the highest tier possible.
Chill recently moved to Teaneck from New Rochelle with his family, including a 21-year-old son with developmental disabilities, and wants to teach others what he has learned. “I spent time learning and absorbing the structures of government funding,” he said. “We can buy housing but we can’t raise the money on an annual basis to operate the homes—it has to be primarily through Medicaid and other government funding. Individual families have to work to maximize the budgets available to their children, and most parents are simply overwhelmed on a day-to-day basis. I want to help educate families. People take for granted ‘this is what they give me,’ but we can get work on their children’s budgets with a goal of being able to have enough funding for housing.”
Taubes told parents that trying to get everything they need for their child on their own would be like getting health care without insurance—you’d go broke. “The only way is to work with the government,” she explained. “Money is there and you have to know how to access it. That’s the way the rules are set up.”
The Bayit Association has a long road to travel until their dreams are realized, but they’re well on their way. It has been a close to two-year process of getting the required permits, but the first house is ready to be renovated and they are about to close on a second. The next step is to find Medicaid-approved providers to provide services to the homes.
Moshe Kinderlehrer, board member and co-publisher of The Jewish Link, said The Bayit Association is adamant about wanting the young men—and hopefully young women in a future home—to be in a Jewish environment with their peers. “There are agencies that do housing but they are not Shomer Shabbos and don’t observe kashrut,” he said. “We want them to be in the environment they grew up in—going to shul and eating with a sense of Shabbos atmosphere.” He also doesn’t want his son to live by himself with a caregiver. “I was told that the future for him would be an apartment with an aide. That’s not the vision I have.”
Money is being raised now for the purchase and renovation of new homes, but the expectation is that day-to-day operations in a home should generally be covered by government funding. The Bayit Association is beginning the process of figuring out who, from the dozens on their lists, would be a good fit to be residents of the first home. Taubes recognizes that her son may not be in the first group. “This project is not just about my own son,” she said. “It’s about helping other families in the community that may need this more. It is about having the infrastructure in place to support all of the adults with special needs in our community.”
Bringing a sense of community involvement is important to The Bayit Association, both in helping people who need housing to get it, and getting support from people with no personal need, just a recognition that these young men and women should be integrated into the community. “This is a community project we should all be supporting,” said Taubes. “Perhaps people in the community own businesses and have a spot that young adults with developmental disabilities can work in. We can be a resource when people reach out to us and we can put them in touch with agencies doing this work.”
There is also a need for board members who do not have a personal reason for getting involved but simply want to help. New board member Ronit Rubinoff joined recently and does not have a child with special needs. Rather, she was inspired by something she learned from the late Rabbi Zacharia Wallerstein z”l, who said, “Look around and see where there is a need in the world. Then go and do something about it.”
Rubinoff got to know Yachad, an organization that helps young men and women with developmental disabilities. Director Chani Herman told her about Bayit’s mission to provide housing with a Jewish atmosphere and connected her with the group. “I looked around and saw what a tremendous need there is for an organization like The Bayit in New Jersey and I felt a personal responsibility to do my part to help work towards fulfilling that need.”
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Mail a gift to: The Bayit Association / PO Box 3131 / Teaneck, NJ 07666
The Bayit Tax ID No is: 86-1535722. For those wishing to donate through a donor-advised fund, Bayit has been vetted and approved by the Jewish Communal Fund and Fidelity Charitable.
By Bracha Schwartz