“Keys! Keys!” David Weisbord says as he tugs at his father’s hand, pulling him toward the door.
“OK, Child, we’ll go for a ride,” Seth Weisbord says with loving exasperation.
A ride with dad around David’s Culver City neighborhood is one of David’s favorite diversions, and Seth is happy to indulge.
“One of our biggest concerns is how to fill his days in a meaningful way,” Seth says.
David is 28 and severely impacted by autism; he is largely nonverbal and also has a degenerative nerve disorder that atrophies the muscles in his arms and legs.
Seth Weisbord and his wife, Beth, have worked hard to assure their son’s quality of life. They bought David a three-bedroom, breeze-crossed bungalow in Culver City, which he shares with a roommate, also disabled. David also has round-the-clock caregivers who guide him in simple household tasks and life skills, and take him for walks in the neighborhood, or for a drive out to Griffith Park or the movies. He takes weekly therapeutic gymnastics and swimming lessons, and he is learning to use an app on his iPad to communicate through pictures. On weekends, he rides his adult tricycle around a nearby park while his caregiver jogs alongside.
Not much of this would be possible on the $621.54 a month David receives in Supplementary Security Income payment from the state — a sum that is supposed to cover all living expenses. Although the Regional Center, which coordinates state-funded care, pays for his caregivers and some therapy, David would not have his tricycle, his iPad, his television, most of his clothing or pocket money for the movies — or the van to get there — without the special needs trust the Weisbords set up.
To be sure, not all families have the Weisbords’ resources, but Seth is working to help other parents figure out how to achieve some level of financial stability for their developmentally disabled children, ones likely to be unable to support themselves when they reach adulthood and who will continue to need financial support after the parents die.
Disabled adults are among the most impoverished populations in America, Weisbord says.
In 2008, Weisbord set up the nonprofit organization Economic Security for Disabled Americans (securedisabled.org), which disseminates information to families about the legal and financial issues of supporting an adult with disabilities.
Weisbord, a lawyer by training who spent years writing for television, is working on a book that lays out in plain English issues involving trusts, government benefits, health care and taxation.
And, he is mobilizing the Jewish community to set up an entity he believes can provide both financial advantage and long-term peace of mind for all families.
An individual trust, like the one the Weisbords have for David, appoints a family member, friend or an outside party to make spending decisions for the disabled adult. Keeping the money in a trust, rather than a regular bank account, enables the individual to continue receiving government benefits.
What Weisbord envisions is a collaboration — a pooled model — where multiple families invest their money in a combined trust. The funds are kept in sub-accounts specific to each family, but pooling the trusts allows for greater investment power and allows families to buy in for a smaller amount than would be required to create an individual trust.
More importantly, Weisbord says, although an individual trust may be passed through successive trustees as the disabled adult ages, a nonprofit organization offers long-term continuity.
In addition, most models of pooled trusts include some case management, so social workers may become, when necessary, a proxy parent — someone who keeps track of, but does not deliver, daily care.
The trust usually charges a fee or a percentage of assets for different levels of social work involvement. Most pooled trusts have a minimum buy-in of $12,000 to $25,000, but some have no minimum requirement.
Pooled trusts have been around since the late 1980s, but none exists in Los Angeles County. Some large disability-oriented organizations have pooled trusts, but mostly they are set up by independent nonprofits. The Jewish communities in Boston and New York have successful pooled trusts.
Successful pooled trusts are eventually supported by the fees they charge, but initial startup costs require about three to five years of operating expenses — estimated to be in the hundreds of thousands of dollars.
Weisbord is working to raise money and awareness in the Jewish community.
Now 60, he worked for years on 1980s sitcoms such as “ALF,” “Who’s the Boss?” “Coach” and “The Golden Girls.” In fact, David was born while Weisbord was working on “ALF,” and Seth says he had a hard time reconciling writing one-liners for a furry alien while David, whom he describes as “neat little kid,” began at around age 2 to fade away into a world of repetitive behaviors and nonverbal frustration.
Weisbord spent around 15 years as a stay-at-home dad with David and his two other children, who are twins. He continues to be the primary medical coordinator for David, and orchestrates much of his son’s care behind the scenes.
“I’m going to die; my wife is going to die,” Weisbord says. “I have twins who are almost 19, and maybe they’ll step up to a certain degree. But who is going to be so invested in my son that they’ll go the extra mile to make sure he gets appropriate care? And I think it’s fair to speak for other parents to say that is what can keep you awake at night.”
So far, Weisbord has been involved in bringing together The Jewish Federation of Greater Los Angeles, Jewish Family Service and Bet Tzedek Legal Services to explore the possibility of collaborating on a pooled trust. He’s also been talking to the Jewish Community Foundation and other foundations.
Over the past few years, Federation has begun to explore issues such as housing, quality of life, Jewish engagement and access to services that affect disabled adults, according to Andrew Cushnir, chief program officer for the Federation. Around 10 years ago, Federation and JFS collaborated to set up HaMercaz, a clearinghouse organization for families of children with disabilities, and transitioning to adult care is the next natural step, Cushnir says. This summer, Federation brought a mission of professionals, parents and advocates to Israel to look at innovative living and work models for adults with disabilities.
“Pooled trust is one issue nestled in a suite of issues that are challenges for special-needs adults, and we have convened and are eager to continue to convene different organizations to deal with multiple issues,” Cushnir says.
Bet Tzedek already aids families of adults with disabilities with its conservatorship program, which helps parents gain rights to make legal, medical and financial decisions for their adult children (see accompanying article on conservatorship, page 18).
Bet Tzedek can provide the legal expertise needed to start a community pooled trust, says Bet Tzedek CEO Sandy Samuels. But, he cautions, the issues are complex.
“We are going to push as hard as we can, recognizing that there are a lot of different organizations that need to participate in this initiative,” Samuels says. “We want to make sure that our role is something we can undertake and perform. What we don’t want to do is over-promise and under-deliver.”
Jewish Family Service echoes that cautious determination; CEO Paul Castro says JFS is interested in and able to provide the social service component of a pooled trust, but many details need to be worked out.
A potential pitfall that can occur is that clients underfund the trust because they can’t predict what government benefits, health-care costs and future needs will be as the decades progress.
“We’re happy to be a part of this and take on some responsibility, but our dilemma is once we take responsibility for a client, we can’t walk away,” Castro says.
Experts also warn of high startup costs, a steep learning curve about the legal and financial complexities, and unrealistic expectations. Bet Tzedek, Federation and JFS all say they are committed to coming up with a model that works for Los Angeles.
Boston’s Jewish community has had two pooled trusts (one funded by the beneficiaries themselves, one by third parties, such as parents) since 1999, now serving a combined 35 clients with total assets of $2.2 million. The trust is run by Jewish Family and Children Services, and funded by Combined Jewish Philanthropies, Boston’s Federation equivalent.
Social workers visit clients at least four times a year — more if the client doesn’t have family caring for them, or if the family requests it. The fund is now self-sufficient, and has begun to see remainders — unused money after a client dies. The trust keeps 25 percent of the remainder for operations and to cover clients who run down their assets — a common practice for pooled trusts.
One of the trickiest issues is making decisions about disbursing funds, says Betsy Closs, director of Services for People with Disabilities at JFCS.
Trustees always try to determine what the family would have wanted, but sometimes decisions are not clear-cut. The Boston pooled trust has a board made up of special needs professionals, attorneys, accountants and parents to help make some of the tough decisions.
Simcha Feuerman, who runs the Lifetime Care Foundation pooled trust for Ohel Bais Ezra in New York, tries to have on file a nonbinding letter of intent that outlines the family’s priorities, but even then, it can be hard to act as a surrogate parent who has to say no to an outstretched palm.
Feuerman also tries to give as much autonomy as is appropriate to the adult with disabilities.
“It’s taken years to learn the ropes. There are so many ethical and legal questions and challenges that come up,” he says.
What’s most important for Seth Weisbord is to be sure David can maintain his quality of life in the long term. As he pulls up in front of David’s house after a 20-minute ride in the Prius, David gathers his three bouncy balls, slams the car door a few times — he likes the sound — and bounds indoors, where he goes straight into his bedroom and curls up for a nap.
“I think if this pooled trust is going to happen here, people need to understand the emotional reality of this,” Weisbord says. “They have to see the need.”