Making a place for disabled young adults to live, learn
Deborah Flaschen, a former Wall Street investment banker, was 16 when she enrolled at Tufts University and 20 when she graduated magna cum laude. When her son D.J., who has autism, turned 17, she started looking around at his options, but they were alarmingly limited. “There was nothing in Boston, not a place that I would choose to put him in,” says Flaschen.
The dilemma is one echoed by families of students with autism who, along with other young people with developmental delays, age out of services provided by school districts when they turn 22. Many are ill-prepared to live independently or hold a job. It is a problem that is expected to mushroom along with the growing number of children diagnosed with the disorder.
Lacking an option she felt comfortable with, Flaschen decided to create her own. The result: 3LPlace Life College near Tufts in Somerville for young adults with autism and other developmental disabilities, including Down syndrome and cerebral palsy. Experts in the field say that the Life College is the only one of its kind in Massachusetts, combining a residential and day program under one roof for young adults. With its ability to offer more comprehensive life-skills training, the new project underscores both how significant the need is for the students and how little is generally available.
“Once they turn 22, there’s no obligation unless the state decides they are eligible for adult services and that could be anything from full residential to not much at all,” says Tamar Lewis of Belmont, whose 22-year-old son recently moved into 3LPlace. “This place is a lifesaver. Most are either day or residential, not both, and you have to search for each.”
Nationwide, only 14 percent of adults with such disabilities have jobs outside a care facility. In Massachusetts, developmentally disabled adults are less than half as likely as their peers to be employed at all — and those who are generally work at minimum wage jobs with no benefits.
The demand for programs such as 3LPlace is likely to increase. Autism is the fastest-growing developmental disability in the nation. According to the Centers for Disease Control and Prevention, it affects 1 in 68 people — a 30 percent increase from two years ago. It is characterized by difficulties in social interaction, communication, and repetitive behavior. Some people have intellectual challenges, attention and motor coordination problems, as well as physical and emotional issues.
According to a 2012 study by the American Academy of Pediatrics, more than half of those on the spectrum did not work or attend school in the two years after high school, 79 percent lived with their parents, 60 percent received some therapy and counseling, but nearly 40 percent got no services at all.
“Parents describe it as a black hole, this crater that opens up in front of us and we fall into it,” says June Peoples Mallon, communications and development director at 3LPlace Inc., who has a 15-year-old daughter on the autism spectrum. “The sad fact is that the outcome without some sort of intervention is pretty unrelentingly grim for these young adults and their aging parents, and statistics reflect that.”
The few options, she says, include a Medicaid-funded program called “day habitation,” which provides care and some training in group settings, and some state programs that provide vocational help for higher-functioning students, mostly for low-paying, part-time jobs. Some people, she says, “just hang out at home with their parents.”
In Massachusetts, funding from the Department of Developmental Services goes first to the most severely disabled. Preference often goes to families who sent their children to residential schools, so that when they turn 22, they are more likely to get residential funding as an adult “edging out families who have made big sacrifices for years to care for their developmentally disabled children at home, and who are likely to find themselves continuing in the role of caregiver of their adult child,” says Mallon.
Planning for 3LPlace started in 2008, when Flaschen and her husband, David, looked for a placement for D.J., who was diagnosed with autism 20 years ago when he was 4. The couple met while working on their MBAs at the Wharton School at the University of Pennsylvania. They also have a 26-year-old daughter, who works for TripAdvisor in Cambridge.
“I always wanted a whole life for my son,” says Flaschen, 59, who lives in Brookline. “I don’t see that he and my daughter need different opportunities.”
But when she began looking, she found nothing that helped the transition to adulthood and from home to the community. So, with three other mothers who also had kids on the spectrum, she began to plan and raise money from foundations, corporate donors, and private individuals.
Working with experts at Tufts, Lesley, Harvard, and Boston universities, they created a transition curriculum, and the Life College was approved by the state Department of Developmental Services.
Karen Levine is a psychologist and member of the state’s Autism Commission that issued a report in 2013 calling for more services for the estimated 75,000 people in Massachusetts with autism. She says that 3LPlace is the only one of its kind in the commonwealth.
“It is much more individualized and really values the whole person, their unique interests and talents, prioritizing their social and emotional well-being, and it incorporates the arts,” says Levine, an instructor at Harvard Medical School.
Why the name 3LPlace? The program includes 3 L’s: Learning, which is the curriculum; Living, which is the Life College; and Linking, which is the group’s commitment to sharing what they’ve done with other cities across the country.
“We want to write the playbook on how to open something like this,” says Flaschen.
3LPlace opened in November and so far has two residents, including D.J., and others are being evaluated for placement. Members ages 22 to 32 can stay two to three years before transitioning to independent or at least semi-independent living.
The house can hold 10 young men and women, each with their own room. Two more rooms are set aside for overnight supervisors.
In 2009, the Flaschens bought the two-family house near Davis Square and gutted it. They chose the location for its access to public transportation, stores, and jobs. The result is a cheery but uncluttered place that offers a 3-to-1 student-staff ratio with a clinical director, social worker, various therapists, and teachers.
D.J.’s sunny room has a bunk bed and near the bathroom sink is a poster of a man with shaving cream on his face and the question: “D.J., is it time to shave?” There are step-by-step illustrated instructions for washing one’s hands, brushing and flossing teeth, and what to do after showering (“comb hair, put deodorant on”).
A daily schedule is posted for each resident, and they include various therapies, chores, and classes. D.J., for instance, is artistic and works closely with Meghan Montgomery, an expressive arts therapist.
The other tenant is Tamar Lewis’s son, who is also on the autism spectrum (she doesn’t want his name used). He was living at the Cardinal Cushing Center in Hanover but recently aged out. He is passionate about music, and 3LPlace is catering to that. The staff contacted the Somerville music club Johnny D’s, where her son will soon start to volunteer.
None of this comes cheap. Residential programs range from about $80,000 to $225,000, Mallon says. Tuition at 3LPlace is $132,500 a year. Those at 3LPlace will receive a mix of funding from private and public sources, depending on their eligibility. Flaschen is working on raising money for scholarships. For Lewis’s son, labeled a top priority by DDS because he has long been a residential client who cannot live at home, the state is paying most of his cost.
What will be next for D.J., when he’s finished at Life College? His mother sees him in an apartment in the neighborhood with three bedrooms: one for him, one for a friend, and one for a supervisor, in a kind of family setting instead of an institution. Maybe, she muses, he’ll work in an art studio.
But more important, Flaschen stresses, is what D.J. himself envisions, with Life College helping him figure out how to get there. “Rather than look at our young adults as people limited by their challenges, we look at them as people with untapped potential, and ask what we can do to support them,” she says.