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They become a nonprofit, raised their own funds, bought their own property, hired a design team and a social services agency to staff a home. Last month, six young men -- with cerebral palsy, autism and Down syndrome -- moved into a red-brick Georgian on a quiet block in the same Chicago neighborhood, Rogers Park, where they grew up.
Other parent-empowered groups are also rolling up their sleeves, joining this quiet crusade. A Glenview, Ill., couple has partnered with Rush University Medical Center to build housing for young adults with autism in Chicago's West Loop. In Wheaton, Ill., another family group collaborated with their church for a similar project.
In a previous era, children such as Josh would have been institutionalized. Today, because of medical advances and sweeping public policy changes, children with disabilities are not just surviving but thriving into adulthood. And no one knows what to do with them all.
'Look at other sustainable models'
There are 1 million to 1.5 million Americans with autism alone, 80 percent of whom are younger than 22, said the Centers for Disease Control and Prevention. "The statistics are frightening," said Tony Paulauski of the Arc of Illinois, an advocacy organization. "What's going to happen to all these folks? We are bracing ourselves for a demographic wave and we are totally unprepared."
These young adults were born into a very different world than earlier generations. Parents started seeing their offspring for what they could do -- not just what they couldn't.
They pushed clinicians for more physical, occupational and speech therapy and pushed lawmakers toward mainstreaming policies. No longer hidden, these youngsters were now woven into society, participating in school plays, soccer and Boy Scouts.
Then, at age 22, most publicly funded services end. As the kids get older, the journey gets lonelier. Some 80 percent of young adults with autism ages 19 to 30 still live at home, said a 2008 Easter Seals study.
"People see how futile the situation is," Paulauski said. "And as government continues to shrink, it becomes even more important that families look at other sustainable models."
The Schurs, who have two other sons, were being consumed by the day-to-day challenges of raising a child with cerebral palsy. The doctor visits, the financial pressures, the physical demands all exact a steep toll. For example, Joyce Schur would call her husband at work when Josh needed to go to the bathroom because she could no longer lift her 130-pound son from his wheelchair.
"I watched these kids grow up, and I couldn't believe that we had nothing for them," said Shana Erenberg, a special education consultant. "I was embarrassed for my state."
So when Baruch Schur called Erenberg in 2009 to say they had bought a house in New York that offered more and better services, "it was the last straw," she said. For Schur, it was the only solution. "If we stayed in Illinois, we had two choices: A nursing home or a nursing home," he said.
That night, Erenberg set out to create a home that offered safety, friendship, kosher food, activities and interiors that said "Pottery Barn" more than "state facility." She reached out to Alderman Debra Silverstein and, along with Baruch Schur, they identified six potential residents and took their proposal to the other parents, who didn't have a lot of faith such a vision would become a reality, Erenberg said. "They told us: 'We're exhausted.' And we said, 'Let us carry the ball for a while.'"
That's how the Libenu Foundation -- Hebrew for "our heart" -- gained traction. Parents and other volunteers scoured the nation for models, then bought a three-bedroom home, which cost $400,000. They poured in another $600,000 to make it seven bedrooms and handicapped-accessible.
'This is a blessing'
Each family made a financial commitment -- although they declined to give an exact amount -- and held fundraisers, taking their story to anyone who would listen. Services such as aides, transportation, recreation and personal care are managed by Clearbrook, an Arlington Heights, Ill.-based agency, and are paid for, in part, with public funding.
Many siblings of disabled adults find themselves thrust into the role of caregiver after the death of a parent, said Jan Doyle, who co-founded the nonprofit Center for Independent Futures. "They have their own jobs, children, lives and they call up and ask, 'What do we do?'"
Joan Katz, one of the Libenu parents, was determined that would not happen. Her son, Jacob Mosbacher, who has Down syndrome, has been the beneficiary of years of enrichment and learning. At 25, he is an artist who has displayed at city galleries and has his own website. "As a parent, this is a blessing; but for siblings, it's a double blessing," she said. "And for Jacob? It means he has a life."