February 22, 2012
Finding their place [VIDEO]
Twentysomethings with special needs are mainstreaming themselves into independence
Lauren Levine is settling in with a group of friends apartment to watch “American Idol,” when a look of panic comes over her face. She rummages around, finds her keys and darts out.
“I left the hair thing on,” she says when she returns, breathless, from her own apartment downstairs. “I was straightening Jasmine’s hair before we came up here, and I forgot to turn it off. Wow. That was close.”
Levine has wide blue eyes accentuated with sparkly eye shadow, and her voice is spiced with a sense of interested wonder. She wants to be a cosmetologist — she’s taken some classes — but for now she is just happy to be living on her own, and working the front desk at a gym in Century City.
Levine’s developmental delays are less obvious than those of her roommate, Jasmine Banayan, who has Down syndrome. Banayan is gregarious and warm and asserts herself as something of a leader among the dozen or so friends who live in a cluster of apartments in Westwood.
The group gets together every night to hang out at one or another of their homes, or to go out to dinner, and, on Friday nights, the five Jewish members of the group are regulars at Shabbat dinner and services at nearby UCLA Hillel.
All are participants in a parent-led experiment in independent living for adults with developmental or cognitive disabilities.
Today’s 20-somethings with disabilities have grown up at the vanguard of a successful mainstreaming model, and they and their parents now are determined to continue to break the mold, to live adult lives with high expectations, in keeping with the ideal that not only is there a place for them within mainstream society, but that they can contribute in meaningful and enriching ways.
While the impetus for change exists, needed funds won’t necessarily follow. Government budget cuts are endangering existing programs, and start-up costs for new programs can be prohibitive.
Story continues after the video.
But growth is inevitable: The number of adults with developmental disabilities, especially autism, is expected to increase dramatically over the next several years. And they have been raised to believe that a disability is not an obstacle.
“If you stay focused and you believe in yourself, you can do things,” said Emily, a 15-year-old on the autism spectrum, who participates in a b’nai mitzvah class at Vista Del Mar’s Nes Gadol program. “That is how I can accomplish things in life. I would like to go to college someday and have a decent life. Just a normal, happy life.” (Emily’s last name has been left out because she’s a minor.)
Banayan is already living that life.
“I am an independent woman here,” she says, sitting on her zebra-striped bedspread, a bright pink pillow in her lap. “I love the way I live.”
The Westwood crowd is high-functioning, with a variety of disabilities — autism, Down syndrome, cerebral palsy or other related developmental disabilities. They all met at Pathway, a two-year program at UCLA Extension, where approximately 40 students take classes such as time management and human relationships while also auditing classes at the university or through UCLA Extension. They work at internships and live in apartments, where state-funded staff helps them learn to cook, shop, do laundry and budget, and a resident assistant keeps an eye on things.
These were among the first Pathway graduates, in 2009, and they continue to live independently, with the help of state-funded support staff. Their parents act as case managers, coordinators and counselors.
The majority of developmentally disabled adults still live with parents, but this newer model offers individuals, and their families, the much-desired dignity of self-determination, the opportunity to operate productively as adults in the mainstream society and a community of friends.
“To be honest, I never dreamed that it would be possible for Daniel to live elsewhere when he was younger. I thought he would be home forever,” said Hendel Schwartz, whose son hosted the recent “American Idol” viewing in the apartment he shares with a roommate. “Now, I have even grander dreams. I want him to have a job, and I would love him to meet someone wonderful and have a life partner,” an idea Daniel readily agrees with.
Many families have yet to find such a solution. After pouring their lives into making sure their disabled children had the teachers, therapies and recreational activities they needed, when the structure of the school system falls away, the new challenges of adulthood can hit with full force. “You sit at that high school graduation, and you realize this is an adult, and what are they going to do for seven days a week to make up their days?” said one mother, Lynn Doner.
Samantha Doner, who is stylish and warm and has tons of friends, lives at home and volunteers a few times a week to assemble packages for soldiers through Operation Gratitude. Her support staff taught her to make macaroni and cheese, “and I didn’t burn the house down,” she jokes.
Doner participated in a Birthright Israel trip last December for young adults with special needs, along with Banayan, Levine and Schwartz. Doner and Banayan are part of a group of about 30 kids who went through programs at Valley Beth Shalom and Camp Ramah together, and they and their families form a tight-knit community.
Samantha’s parents considered a college in Bakersfield — but it seemed too far — as well as Pathway, but it costs around $50,000 a year.
“Is that the best use of that money? Or is better to put it into a condo for Samantha?” Lynn Doner wonders.
Some families reject assumptions about what their children can achieve.
“My son is severely impaired. He doesn’t talk, and there is no way he can ever work,” said Seth Weisbord of his 28-year-old son, David. “I think it’s so important to keep in mind that everyone is different. It drives me crazy when people make assumptions that everyone is going to work and it’s just a matter of finding the right accommodations for them.”
Weisbord bought a house for his son, who now lives there with a roommate and 24-hour help.
This month has been designated by Jewish Federations of North America as Jewish Disabilities Awareness Month. The Jewish Federation of Greater Los Angeles, in collaboration with about a dozen independent and synagogue-based programs, crafted a comprehensive calendar of events and a resource guide for its Inclusion Awareness Month. The month culminates with a Feb. 29 conference, “Better Together,” which will explore creative ways to make Jewish life more inclusive.
Whose reality is real?