By Guest Blogger, Michael B. Held, PhD:
In the received wisdom that gets passed from one special needs family to another, one favorite is: “What is the first thing that you say to a family when they have a newborn has a disability?” Pause for effect. Answer: “Mazal Tov!”
But let me pose a variation on that theme: What does one family, with a special needs son or daughter, say to another when their child graduates high school? Pause for panic to set in. Answer: “What do we do now?”
Inclusion implies being part of a community. With youngsters still cocooned in a loving family, we work on changing attitudes and teaching the surrounding community about disabilities.
However, for adults to be included, it is necessary for them to be able to function as other young adults do – independently – and for that one cannot rely on the parents’ home other than as a launch pad.
At the Etta Israel Center, our guiding philosophy is Inclusion in the community, independence in life. It is a meaningful philosophy but how exactly do we put it into practice?
We began by providing inclusion services in Jewish Day Schools in 1994 and have served more than 200 students since. School-based inclusion, when done properly, is transformative for all involved (view our “See the Invisible, Do the Impossible” video as an example of successful inclusion). In 1995, we ran the first of our 75 Shabbatonim to bring together synagogue members, volunteers, and individuals with special needs in a Shabbat of prayer, learning, singing, dancing and friendship.
The drive for inclusion in childhood and adolescence, as imperative as it is, often runs into a wall when the person with special needs prepares for the transition to adulthood. I have talked with dozens of families who face their child’s transition to adulthood as if they are staring into an abyss. Everything seems to change – the lingo (from an IEP to an IPP), the caseworker, the support services, the funding – but most dramatically of all, the young person himself or herself changes as he or she enters the 20s.
This is the how the second part of our philosophy evolved: Inclusion in the community, independence in life.
Independence can’t blossom without a residential option beyond the parent’s home. Since 2000, our Center has had the privilege of operating the only Jewish group homes in the Los Angeles area. Soon we will open our fourth. Each home, licensed by the State and vendored by the Regional Center, is a home where residents build their own lives based on choices that reflect both personal and communal (their housemates) interests.
When parents step back from the daily challenge of raising their child with special needs – when good options for adult transitions exist and can be acted upon – parents begin to experience the psychological space needed for their young adult to move forward on his or her own.
I have seen this with each of the adults who live in our homes (I should say “their homes”) – as each develops a new identity, an adult self, characterized by making choices, choosing friends, having interests.
Creating an inclusive community certainly requires many hands and hearts, repeated and sustained efforts and long-term commitments. My vision of inclusion for adults is a community that offers housing options on an affordable basis so that independence can be achieved.
And so, what do I hope families with a special needs son or daughter will say to each other when their child graduates high school? Just as other parents of “typical” kids may say with pride to one another “My 22-year-old is off to graduate school / getting married / moving to another city to start a job” so, too, will families with special needs young adults say with pride, “Our son or daughter is moving into his or her own home here in Los Angeles where he or she will grow in independence, develop friends, celebrate Judaism, go to work, and engage in community activities.”
Then we will have joined the two key pieces – childhood and adulthood – and created a community that truly supports inclusion throughout the life span.
Dr. Michael Held is the founder and executive director of the Etta Israel Center. He can be reached at michael@etta.org. More information about the Center can be found at www.etta.org.
The Federation provides support to Etta Israel Center’s residential services including the group homes.
