Purchasing plots and headstones is the next thing Lisa Toll plans to do once money allows. But not for herself — for her 29-year-old twins, both of whom have Asperger's syndrome, coupled with other mental disabilities. She's already paying for multiple life-insurance policies so they'll have something to live on once she's gone.
It's not that Toll is preparing to depart the earthly reality of Northeast Philadelphia at age 53. But as the sole supporter of her daughters, she said, it's something she thinks about all the time.
"I have to take care of my girls because nobody else will," said Toll, who works four part-time jobs to make ends meet.
For parents like her, the question of what will happen to their children once they're no longer around or able to help them looms like an ominous cloud because there simply aren't many affordable services for high-functioning adults with disabilities.
"You see the anxiety that the parents have: Who's going to know them like they're going to know them?" said Paula Goldstein, chief operating officer at Jewish Family and Children's Service of Greater Philadelphia.
Now, for the first time, JFCS will be able to help people like Toll to set their grown children on a solid path for the future.
Through a new program called B'side, JFCS will provide families with holistic long-term planning, counseling and regular home visits. Social workers will connect clients to anything they need, from reminders to get chores done to help balancing their checkbooks.
The program — funded by a $188,000 grant for each of two years — is the first of a two-part effort at JFCS to bolster social services for those with special needs.
A separate infusion of donations from a group of local Jewish funders has also designated $300,000 over three years to create a Web-based special-needs resource center. A dedicated case manager will be hired to aggregate resources for the site, connect callers to appropriate service providers, and in some instances, assign staff to work directly with clients.
Living With It for 50 Years
Bobbi Brodsky, the driving force behind B'side, has a personal stake in its success. She and her husband, Harvey, have done everything to make it possible for their adult daughters to be independent, yet they still sometimes need a hand, she said.
"I've been living this every day for 50 years. I know what it takes," said the 73-year-old Haverford resident. "As we're getting on in our lives age-wise, I feel as though they need to also have someone there for them, coming in and just checking on them. Life is hard to begin with, and they have all these obstacles. Somebody has to be there for them."
While they're fortunate to have the means to pay for that kind of service, Brodsky said, what about those families who can't?
"It's my way of providing for the community who don't have the access to all of this," she said.
The couple has been longtime supporters of services for special needs, also starting a social group for adults with mental disabilities.
The B'side grant, which she noted was inspired by her and her husband's parents' Jewish values and philanthropy, will continue funding that program as well as provide for the new holistic, in-home care management.
At least two other Jewish agencies — JEVS Human Services and Jewish Community Homes for Adult Independence, Inc., or JCHAI — also offer in-home support to adults with mental disabilities. JCHAI serves about 40 clients; JEVS about eight clients a year.
Helping With Daily Tasks
The care management piece of B'side will target higher-functioning adults who don't qualify for those other largely government-funded programs, said Lisa Ney, JFCS' special-needs coordinator.
Case managers would begin working with about 16 clients in the first year, ideally those who still have close family around to help make decisions. After meeting to discuss their needs and how many hours a week they'd like to work with JFCS staff, the case manager would draw up a service plan for both the family and the client. Another social worker would work directly with clients, whether that entails driving them to synagogue or taking them to a restaurant to practice ordering off a menu.
Even everyday tasks like refilling prescriptions, picking up the phone to make an appointment, shopping for healthy food, doing laundry or navigating public transportation can seem like insurmountable challenges for someone with cognitive disabilities, said Ney. They may need help just organizing their time, taking care of themselves or finding activities where they can make friends, she continued.
"Adults on the spectrum fall off a cliff basically when they turn 21," said Ney.
With the Brodsky funding, clients will pay on a sliding scale based on their income. Those on fixed incomes could pay as low as $5 to $10 an hour for what would normally cost $45 to $96, according to Goldstein.
Ultimately, she said, the agency aims to provide those services for those who can afford to pay the full amount, too.
A portion of the grant will also pay for life-skills workshops on topics ranging from personal hygiene to financial literacy. Currently, 20 adults are enrolled in a new eight-week healthy sexuality course, including one of Toll's daughters, Rachel Watson.
Watson said she's glad for the chance to get out of the house. She'd rather be earning money at some kind of hands-on job, she said, but "there's not a lot of construction jobs that are willing to work with special-needs people," especially those who can't do heavy lifting.
Taking Care of Themselves
Toll is convinced that both daughters have the potential to function more independently if they could find employment that suits their interests and abilities, and get into a routine of taking care of themselves.
So far, Asperger's hasn't kept Josh Rayfield from working.
Still, the 36-year-old salesman doesn't make enough to live on his own, which is why he's thinking about planning for the future "before it reaches a crisis point," he explained.
Rayfield remembered watching a friend fall apart last year after her mother died and there were no plans for what would happen to her.
"Even though I can take care of myself, I'm going to need help and guidance with certain things like where I can afford to live, how I can find a better job to increase my future," he said. "It's a different world than when you were a child, and you got help and people covered for you when you made a mistake."
To learn more about the B'side program, call 267-256-2269.