Dawn Hummel, Jon Zimmerman, and Cheryl Kilmer

A Home For Jonny
A lazy green crocodile lounges on the bed, Disney posters and family photos decorate the walls, and videos are scattered about. This could be any kid’s room. But Jon Zimmerman isn’t just any kid. He is 18 years old, and he has autism.

A neurological disorder with no known cause or cure, autism is characterized by problems with communication and social interaction, and repetitive behaviors. Ever since he was diagnosed at the age of two-and-a-half, Zimmerman has required constant support and supervision with the daily routines most take for granted — washing, brushing teeth, dressing, and eating. His mother, Dawn Hummel, was among the trailblazers, joining with other parents out of frustration to fight for services and research into a disease that was then rarely diagnosed. Nearly 20 years later, those parents are back, this time searching for programs and places to live for children nearing adulthood. "There’s a lot of research going on that is for the cure of autism, but the real deal is what are we going to do when they all grow up?" Hummel asks. "We’re not going to cure the kids that have already been diagnosed with autism. So Jonny is now 18 and my goal for him is to have a happy, productive life."

Now, thanks to TERI, the Training, Education & Research Institute in Oceanside, Zimmerman is learning to live as independently as possible in a group home with five other young men who, like him, have autism and other developmental disabilities. The two-story stucco house is a clean, comfortable place with a big open kitchen, patio, and pool. Each resident has his own room, with quarters for a live-in house manager upstairs. Every morning and afternoon, staff help "the guys," as they’re called, get ready for the day. At TERI’s facilities nearby, each has a lesson plan tailored to his needs that includes life and vocational skills, language arts, physical fitness, and community outings. (Eventually, TERI plans to consolidate non-residential programs, services, and counseling on a San Marcos campus that will be home to the Center for Research and Life Planning.)

But Zimmerman’s new home, one of ten operated by TERI, is just a drop in the bucket as more and more children are diagnosed with autism, an estimated one out of every 150. "That’s the silent crisis you’re hearing and reading about, the huge number of families who are facing this diagnosis and worrying how they will support their kids," says TERI’s founder and CEO Cheryl Kilmer.

Not so long ago, people like Zimmerman might have been sent to mental institutions for the rest of their lives if parents were unable to care for them. Thirty years ago, society began to transition the less challenged patients from state hospitals into large group homes where they could live more normal lives. Kilmer was among the pioneers who helped to develop group homes and day programs for the disabled. TERI was designated a Model Program by the state when it was founded in 1980.

The problem, says Kilmer, is that the dollars aren’t there to start up group homes and to support ongoing services to the disabled that are both intensive and heavy in manpower. While school systems serve children through age 22, adult services are not only "grossly under-funded," she says, but don’t have the higher levels of staffing required to meet the needs of the autistic.

Kilmer fields heartbreaking calls all the time from older parents, fearful about what will happen to their disabled child when they die. "It’s huge out there, you have families that maybe have one surviving parent and the son or daughter has been living at home for the last 50 years, and the parent is 80 or something and they’re scared to death. They need a residential placement for their son or daughter who’s going to carry on when they’re gone."

Hummel, who founded a child development center in East Hampton, Long Island before moving to Rancho Santa Fe, believes the government needs to get more involved. "There aren’t enough people or agencies in the world to handle what’s coming up the pike," she says. "The government has to take a look at this and say, ‘Hey, yeah, we have to find a cure, we have to do the research, but we also have to take care of these children that are becoming adults.’"

Her son, Zimmerman, is one of the lucky ones, now living with a community of people just like him. Hummel recalls how he likes to watch The Jungle Book and other Disney movies over and over again. Shortly after Zimmerman moved into the group home, his mom called to check on him. No Disney movie tonight. He was in the family room watching football with "the guys." — Andrea Naversen, photography by Vincent Knakal

Year Founded: 1980

Overall Mission: To ensure that every individual with autism and other developmental and learning disabilities is able to lead a valued, meaningful, and fulfilling life of uncompromised quality in their community.

Current Funding Objectives: To raise $700,000 by February 2008 in order to complete the process of obtaining the major use permit required to start building the Center for Research & Life Planning. With permit in-hand, to then raise the remaining $7.3 million of the $12 million capital dollars needed to complete construction of the first phase of our two-phase project.

Donation Administration Cost Ratio: 14 percent of donations cover the overhead to run the organization.

Organization’s Biggest Challenge: Building awareness and a community of support that helps break down barriers that individuals with autism and other developmental and learning disabilities face living meaningful and valued lives in their own community.

Contact Information: Laura E. White, director of development, 760/721-1706, www.teriinc.org