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.
Lots of talk, no action … yet
Los Angeles’ Jewish community, along with the general special-needs community, began earnestly discussing new models for housing and independent living about five years ago, but so far the talk hasn’t produced anything concrete.
“There is so much that needs to be done, and I am definitely optimistic,” said Judy Mark, an activist and parent of 15-year-old Joshua, who is significantly impacted by autism. “There is so much chatting going on, but nothing is actually getting done.”
Mark organized a conference in January for the Autism Society of Los Angeles, where 175 parents, professionals and activists looked at quality-of-life issues for adults with developmental disabilities, one of the first such efforts to bring everyone to the table.
Experts at the conference agreed that the housing issue could reach crisis level soon. Not only have expectations changed, but the demographic that experienced the spike in autism that began about 15 years ago is now nearing adulthood, bringing an expected 500 percent increase in the number of adults with autism over the next few years, according to a 2004 report from the Government Accountability Office. On top of that, people with developmental disabilities are living longer than ever before.
Adults with autism require a different approach than do those with other cognitive impairments, Mark said. Collaboration and creative thinking to come up with a variety of programs are sorely needed, she said. She is convinced that money for such programs is out there — whether from the federal government, nonprofits, or even from real estate developers, who can turn a profit by accommodating this growing population.
But many in the field are despairing, as years’ worth of government funding freezes and budget cuts have sapped services for the developmentally disabled. Over the next 10 years, Californians will see a loss of about $53 billion formerly allocated to serve this population, according to a policy note put out by the UCLA Center for Health Policy Research in March 2011.
“We’re getting hammered,” said Ronald Cohen, president and CEO of United Cerebral Palsy of Los Angeles, Ventura and Santa Barbara Counties, one of the largest providers of housing for adults with developmental disabilities. “I’ve been in the system for 30 years, and I’ve never seen it like this, and I don’t know how it can be sustained.”
Nearly 75 percent of California’s adults with disabilities live with a parent or guardian, according to the UCLA study. They receive government funds for in-home support and some skills training, and are eligible for Supplementary Security Income (SSI), usually about $850 a month, to cover food and shelter.
But parents don’t live forever, and an adult dependent upon a parent for too long may end up sitting in front of the television too often, as caregivers age and become less active.
“An adult needs to separate from the family of origin to grow,” said Michael Held, executive director of the Etta Israel Center, which runs the only Jewish group homes in the Los Angeles area.
Held said the best time to make the shift is when everyone else does it — sometime in their 20s. He believes upward of 90 percent of adults with developmental disabilities can find some way to live independently.
About 12 percent of adults with disabilities in California live in group homes or similar small settings, usually run by nonprofits and fully funded by state and federal dollars.
That means most homes run on a shoestring, and while many offer warm and enriching environments, Held acknowledges some have earned a reputation for providing not much more than adequate babysitting.
Etta Israel supplements the government’s monthly reimbursement of $2,100 per resident with another $1,000 to staff the home properly and provide social and Jewish programming. The 18 residents who live in the three Valley Village homes lead full lives with work or classes during the day and social programming at night. They each have housekeeping responsibilities, and are regularly invited out for Shabbat meals in the neighborhood.
Only about 1 percent of adults with disabilities today live in what was once most common — large state or private hospitals, which began to fall out of favor in the 1960s and ’70s. Another small percentage live in nursing homes. Around 9 percent live independently in an apartment or condo, often with a roommate, with state-funded support services. Organizations also offer day programs, which help develop living and job skills.
While supported living offers independence, some in apartments can feel isolated.
“Everyone is looking to turn the Rubik’s Cube to find that combination that works for supporting independence, having some semblance of a community of people with special needs, while at the same time including the neighborhood and community so it’s not isolating and stigmatized. And, it has to be safe, professional and cost effective,” Held said.
Judy Mark and activist Michelle Wolf (Wolf writes the “Jews and Special Needs” blog on jewishjournal.com) are working with The Jewish Federation of Greater Los Angeles to send a mission to Israel this summer that will look at some successful models there.
Kishorit is a kibbutz where 140 individuals with special needs, along with staff and family, aim to be self-sustaining, growing their own food and working in microindustries, including raising dogs and building children’s furniture. Right now Kishorit is far from self-sustaining, even with Israel’s generous government support, but Mark believes it can be a model for California, either for a farm or an urban setting.
Others seek fuller integration with the mainstream.
Tara Reisbaum was inspired by her work as founding director of Camp Ramah in California’s Ezra program, where young adults with special needs learn vocational and living skills at camp.
Reisbaum envisions an urban replica, where a building could house those in need of the most support, while others live in supported apartments nearby, coming there for services, enrichment or Jewish programming.
She approached the Jewish Home, a residential facility for the elderly, to explore developing housing for disabled adults. The Jewish Home said through a spokesperson that while the idea is in their strategic plan, nothing is on the table right now.
Reisbaum teaches and counsels Banayan, Levine and some of the others who live in the Westwood apartments, and consults with their families and others on next steps.
She said one of the biggest obstacles so far is money. These models all have enormous start-up costs, as well as significant monthly costs for residents. She said around 30 families met just this month to discuss the issue, and are looking into existing programs that may be adapted to their needs.
Etta Israel also found cost an obstacle when it tried to launch J-CHAI (Jewish Community Housing for Adult Independence), which proposes placing residents into apartment buildings in the largely Jewish Pico-Robertson neighborhood. J-CHAI would offer case-management services and Jewish programming, giving parents peace of mind, now and for when they’re gone.
The model, which Held is ready to implement as soon as he has takers, would cost around $3,000-$4,000 a month per resident, including rent, which participants could partially cover with their SSI payments. Some parents worry that Etta Israel would be religiously restricting, but Held said the apartments would offer the freedom they need to express their Judaism.
The residents in Westwood are essentially using the J-CHAI model, but it depends on parent involvement — which families admit doesn’t bode well for long-term stability.
“The bottom line is, I oversee everything she does. I’m very involved in her life,” says Haleh Banayan, Jasmine’s mother. “I don’t go there every day, but I talk to her 10 times a day, and I’m always working in the background.”
Haleh Banayan is president of Etta Israel’s Persian chapter, which attempts to break the stigmatization of special needs.
In addition, the residents are on their own at night. Haleh Banayan says she spends a lot of her time managing relationships, both roommate and romantic. Money management — paying a restaurant bill, or getting the right change — is also a huge issue for those with special needs, as is safety and avoiding financial and physical predators.
“Of course I worry all the time, but I have to trust Jasmine’s ability to do things,” Banayan says, “and I have to believe in her.”
Over the last few years, the Jewish community, which once offered little to those with special needs, has done a complete turnaround, observers agree, providing the spiritual and social texture often missing for those with disabilities. Much of that growth focused on youth, but the last few years has seen an increase in offerings for adults.
Susan North Gilboa runs Our Space at Temple Aliyah and Valley Beth Shalom, which has been at the forefront of Jewish special-needs programming for 30 years. She recently created the Artistic Jewish Spectrum, a weekly program to serve adults.
Jewish Family Service’s Haverim program, founded more than 30 years ago, continues to grow its programming, offering cooking classes, weekend trips, a restaurant club and Jewish holiday celebrations. Other synagogues throughout the city are creating programming and working to make their services more welcoming to people with special needs.
Inclusion and special needs is a priority for Federation, according to President Jay Sanderson. Federation has increased its annual allocation from $280,000 in 2010 to $470,000 for 2012. Much of that goes to fund Hamercaz, a one-stop call center for families with disabled children. Jewish Family Service runs the program, which partners with 11 organizations.
Etta Israel recently received $65,000 from Federation, its first Federation grant targeted at the group homes.
“Federation is starting to play the role it should have played 20 years ago, in terms of leadership and vision,” Held said. “The vision and the message are now clear, but the amount of funding is still extremely limited — hardly enough to do anything substantial.”
Still, Held believes the solutions will come.
“It really is such a fantastic, wonderful time in the history of Jewish community and society in general, in terms of how much support there is for people with disabilities, compared to 40 years ago, or even 20 years ago,” Held said. “We’re living at a time when everyone is trying to understand, to expand, to be full of compassion and reaching out to one another. And it’s working. It’s making us a better community.”