February 22, 2012
Finding their place [VIDEO]
Twentysomethings with special needs are mainstreaming themselves into independence
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Samantha Doner, center, still lives at home with her parents, Mike and Lynn. She volunteers to assemble packages for soldiers and has a busy social life. Photo courtesy Doner family
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.
