By Jay Ruderman, President of the Ruderman Family Foundation.
Most Jewish philanthropy that is focused on Jewish causes, such as trips to Israel, books to families, supporting Jewish education and summer camps, and the likes, is geared toward keeping our community Jewish and combatting assimilation. We can agree that to ensure the future of our culture, we have a vested interest in ensuring that our younger generations embrace their Jewish identities and are proud members of our community. However, if our goal is to have a vibrant, growing community, we cannot afford to exclude a fifth of our community – that is, all those of us with a disability. About 20% of our population has a disability and instead of ensuring that they are fully included, we alienate them and their families through segregated sub-minimum wage workshops, separate education programs and inaccessible synagogues.
This is not only wrong in and of itself, but the fact is that this kind of segregation alienates our younger generations. Younger people overwhelmingly embrace inclusion of all people and frown on segregation. If we stay comfortable with excluding a fifth of our community, our young people will turn away and find inclusive communities elsewhere. We cannot afford this loss of a fifth of our members, and with it the loss of our future.
On January 17, our Boston Mayor Marty Walsh delivered his State of the City address in which he made a powerful claim. He said, “At a time when cities must lead, Boston is the leader of cities.” If you don’t agree with him already, it is easy to dismiss such a statement as fancy rhetoric at best and self- aggrandizement at worst. While I can’t speak for the city as a whole, I can speak for Boston’s Jewish community. We have one of the most holistically inclusive communities in the country and offer a model that can, and should, be replicated in all cities.
These are unprecedentedly wealthy times for the Jewish community in the US and there is no reason that community leaders working together can’t transform their locale into an area that embraces inclusion. Collaboration was the first step to our journey as well.
Twelve years ago we partnered with Combined Jewish Philanthropies (CJP) to ensure that Jewish day schools in our area became inclusive through our Initiative for Day School Excellence. Unlike public schools, private day schools are not by law obliged to be inclusive and offer education to students with learning disabilities, or any other disabilities. This meant that if a family wanted to give their child a Jewish education, if that child had a disability, they would be facing a lack of support and in some cases, a lack of welcome. If you exclude children from our schools, you exclude their families from our community. This simply is not a way we strengthen our communities. Quite the opposite.
However, Jewish education is of course only one aspect of our lives. To create truly inclusive communities, we have to think holistically and across a person’s full life span. This is also why we collaborated with CJP as well as Jewish Vocational Services (JVS) to create our Transitions to Work – an initiative that provides effective, hands-on training for young adults with disabilities to become gainfully employed in a competitive job market. We have to date partnered with over 75 employers in our area. This approach is crucial because similarly to education, there are not many, and sometimes not any, support systems for young adults with disabilities who have graduated school, but don’t necessarily have the skills, or social skills for employment. According to the latest U.S. Department of Labor statistics, only 20% of people with disabilities participate in the labor market. That means that 80% of people with disabilities are unemployed.
The exclusion that occurs without gainful employment is not only a financial one. For most of us, our work is where we socialize with others, forge friendships, and find a sense of meaning. It is absolutely imperative that communities practice inclusive hiring to strengthen the cohesion and productivity of all its members, while also strengthening the local businesses who benefit from loyal and competent talents they would have missed out on otherwise.
And of course we couldn’t have achieved a holistic approach to inclusion without ensuring that our synagogues valued all members of our community equally. In partnership with CJP, we launched the Ruderman Synagogue Inclusion Project where we’ve created a network of synagogues committed to sharing innovative inclusion approaches that enable all members of our Jewish community and their families to attend services and fully participate. Our project includes synagogues from all denominations; after all, there is no group of people that does not include people with disabilities.
Statistically nearly all of us will become disabled at some point in our life. People with disabilities make up the largest minority in our country. It simply does not make sense to not fully include this huge segment of our population in all of our social milestones and life stages. So I challenge all Jewish communities to ensure that we live in accordance with our Jewish values and transform our communities into beacons of inclusion. For cities to lead, communities need to lead first.
An informative and engaging workshop on "Saving Enough for Our Special Needs Families" by Barrett Porter and Abacus Wealth Partners.
The Stephen Beck, Jr., Achieving a Better Life Experience Act (ABLE) Act was signed into federal law in 2014 and allows eligible individuals with disabilities the ability to establish “ABLE accounts'' that are similar to college savings “529 accounts" with the ability to spend contributions much more broadly than just education.
The new tax-free ABLE accounts will allow more individual choice and control over spending on qualified disability expenses and limited investment decisions, while protecting eligibility for Medicaid (Medi-Cal in California), SSI and other important government benefits for people with disabilities.
Contributions to an ABLE account, currently limited to $14,000 per year, can be made by family, friends, or the beneficiary themselves. The account’s earnings are allowed to accumulate tax-free, and the withdrawals, provided they are applied to qualifying disability expenses, are tax-free.
Each state has the ability to set up their own ABLE program, and California's version, called CalABLE, is in development and is expected to open the summer of 2017. For more details, go the CA State Treasurer's website on CalABLE at http://treasurer.ca.gov/able/.
You also have the option of opening an account in another state. Currently, ABLE programs are operating in a number of states, including Oregon, Michigan, Ohio, Virginia and Florida. For more information, go to the website of the National Resource Center for the ABLE Act at http://www.ablenrc.org/.
I know what it’s like to care for a son with microcephaly. My child is 53 years old By Barbara Altman
Adults with severe developmental disabilities, such as microcephaly are living longer than ever, but the services haven't kept up. As the author of this piece writes, "It is time to reexamine what President Kennedy started and commit the necessary resources to helping — and including — everyone with limitations. They have a wide range of needs that don’t stop when they turn 21.
Martha Goldberg is an 82-year-old widow who has one adult child, Debbie, who is 53. Debbie has mental health challenges and is on the autism spectrum. Although Debbie is able to live independently in Santa Monica, she has never held a steady job and still counts on Martha for financial, emotional and practical support, for everything from paying bills to getting to the dentist. She has very few friends and doesn’t get out much, due to her anxiety issues. Martha has had many a sleepless night worrying about what will happen to Debbie after she is gone.
Within the Los Angeles Jewish community, there are thousands of families in similar situations that are dreading the future. Because most adults with disabilities are unable to get and keep steady jobs, they rely on needs-tested government benefits for financial and medical assistance, such as Supplemental Security Income (SSI) and Medi-Cal. These essential government programs have very strict limits on allowable income and assets, which means that leaving an inheritance for relatives with disabilities can jeopardize them. But people with disabilities need extra money beyond government benefits in order to have a high quality of life and to be able to participate in the community.
High-net-asset families who can set aside $1 million for a special needs trust are able to use commercial banks and law firms that can provide professional trustee and money management services, and can support the adult child after their parents have passed. But what about the rest of us?
It turns out there is a solution: a pooled special needs trust. Created formally by Congress in 1997, pooled special needs trusts must be established and operated by a nonprofit, which creates a master trust document. To become a member of a pooled trust, the beneficiary, his or her parents, grandparents, or the court needs to sign a joinder agreement — a legal contract to enroll in the master trust. Then, as assets are funded to the pooled trust, a separate sub-account is established for each member. Because assets are pooled together, the trust is able to maximize the returns on investment and at the same time reduce the cost of administration and management.
I first heard about pooled special needs trusts around 10 years ago from another parent with a special needs child, Seth Weisbord. He learned about their existence while doing research into ways parents of disabled adults could plan for their long-term financial needs.
“I don’t understand why there are over a hundred pooled special needs trusts located over the country,” Seth told me at the time, “but we don’t have a single one based in L.A. County.”
And now, a decade later, I find myself as the founding executive director of the Jewish Los Angeles Special Needs Trust (JLA Trust). We recently opened for business. And I also now know why no one else has done this: It’s not easy, with many legal, financial and social work challenges and bumps in the road.
Fortunately, I am blessed with a dedicated board chair, Sandy Samuels, former CEO of Bet Tzedek Legal Services, along with other passionate board of directors members: Yolande Erickson, Dr. Yechiel Shalom Goldberg, Janice M. Jager, Stanley Kandel, David Pollock and Adynna Swarz. And we are doubly blessed by having a national expert in special needs trusts, estate attorney Stu Zimring, as the writer of our master trust documents and an ongoing legal consultant.
JLA Trust individual accounts are open to all disabled persons with a $20,000 minimum investment. The account provides professional trustee and investment services, along with links to other nonprofits, such as Jewish Family Services of Los Angeles (JFS) and ETTA, which can provide care coordination and direct services, paid out of the beneficiary’s individual account.
Special needs trusts allow beneficiaries of government safety net programs to keep government benefits such as SSI, Medi-Cal and In-Home Supportive Services (IHSS) and legally supplement those benefits with their own funds, or with money from family members or friends. Money invested in the pooled special needs trust is carefully handled by professional managers to support persons with disabilities throughout their lifespan, such as paying for out-of-pocket medical costs, furniture/clothing and trips out of state to attend weddings or other simchas.
Through our partnership with True Link Financial Inc., a San Francisco-based tech company with expertise in trust finances and related services, we also will be able to offer a customizable debit Visa card, which can be set up to allow only certain categories of purchases, as well as spending caps in each category. So, for example, if the adult beneficiary loves to purchase video games, a maximum monthly amount can be preset in that category. The cards also allow for certain categories to be blocked, such as online purchasing, if that has been an issue in the past.
A three-year, $250,000 Cutting Edge Grant from the Jewish Community Foundation of Los Angeles provided seed funding for the JLA Trust. Planning grants from The Jewish Federation of Greater Los Angeles funded a community-needs assessment and development of a business plan, and Bet Tzedek Legal Services served as fiscal sponsor and incubator of this project for the past four years. Since August, JLA Trust has been open for business with offices located at JFS Senior Services building at 330 N. Fairfax Ave.
JLA Trust is currently enrolling beneficiaries in first-party pooled special needs trusts, created with funds that belong directly to a beneficiary, such a legal settlement or inheritance, and will soon offer third-party pooled special needs trusts, which are funded by parents, grandparents or other family members. By providing this new community service, we hope that all the parents out there will be able to sleep a bit easier.
Are you working, and also taking care of a loved with disabilities? Here's some expert advice from on how to juggle all the different parts of your life from Caregiving.com
When you work and provide care to a family member, you can find yourself juggling two full-time jobs. When you manage this working family caregiver, you may find yourself with a very stressed-out employee.
In this 45-minute video, Denise M Brown from Caregiving.com will introduce you to the stresses your employees who care encounter at work and at home. She’ll also offer suggestions, ideas and resources so that you and your caregiving employee communicate effectively, manage workflow efficiency and handle the impact of a caregiving crisis on co-workers quickly.
FACTx is coming up soon! To be held at the Electric Lodge just off Abbot Kinney in Venice, FACTx is a unique learning experience where speakers from various fields will discuss topics in disability from practice to law to day to day life. Join us on October 14th and 15th for this new and enlightening series!
Regional Center clients can attend free, and we have received funding to offer scholarships to those who request.
Check out our schedule here and learn more about FACTx here!