BY LAUREN APPELBAUM | JUL 31, 2019 | COLUMNISTS
As anyone in Los Angeles knows, the 405 Freeway often comes to a standstill. But for Mindy Alper, who does not like crowds or excessive noise, it is heaven. “Just sit there not moving … completely safe to be with my thoughts.”
Through powerful cinematography and music, as well as animations of Alper’s drawings, director Frank Stiefel’s 2016 Oscar-winning short documentary, “Heaven Is a Traffic Jam on the 405,” shows viewers what it is like to have depression and mental illness.
However, during a post-discussion screening hosted by Jewish LA Special Needs Trust & Services (JLA Trust), Stiefel was quick to say this is not a film about mental illness.
“I did not set out to make a mental health film,” said Stiefel, whose first film was about his deaf mother but did not focus on her deafness. “My intention was to do a portrait of a person. … I just wanted you to meet my friend Mindy.”
Stiefel purposefully did not reach out to any mental health organization for a consultation. He also felt strongly about not talking about Alper’s various diagnoses.
“A diagnosis becomes a barrier,” he said. “You’ve now put somebody in a box and taken away the experience of meeting a complete person. You now are meeting a disease.”
An accomplished artist and sculptor, Alper is a client of JLA Trust, which ensures that children and adults with disabilities are able to obtain a high quality of life by leveraging the power of community to assist with financial security and peace of mind.
“A diagnosis becomes a barrier.You’ve now put somebody in a box and taken away the experience of meeting a complete person. — Frank Stiefel
As a child, Alper lacked family support as she experienced a fear of touch, a mother who did not embrace her and father who did not accept her. She had no official diagnosis, but later in life received several. The only mention of something official in the film is when she talks about the medication she takes — for depression, anxiety and obsessive-compulsive disorder, as well as for digestion problems due to the other medications’ side effects.
In the film, her mother said her husband “thought it was deliberate, that she could do something to change it” when Alper was unable to take care of herself at age 16. She said while her husband “could talk about mental illness,” he was not willing to believe that his daughter needed help. “Maybe he believed it for someone else but not his daughter.” As a result, Alper was kicked out of her home.
Later in life, she did not speak for 10 years. She tried shock treatments, which led to brain damage.
“As far as I know, these things are due to trauma,” Alper said. “Still, I really don’t understand why I’m afraid of those things [like fear of touch]. I can feel lots of love from people. But I’m still a strange child.”
Art became therapy for Alper from a young age. Her mother first enrolled her in an art class when she was 4 years old and Alper has continued making various forms of art, from sketches to papier-mâché, as an adult. Her fascinating body of artwork reveals a lifetime of extreme depression and anxiety.
“Later times, it felt very cathartic,” she said. “When I could not speak, it was the only way to express myself because I could not write.”
Stiefel filmed Alper creating art every week for a year and a half, first interviewing her after six months of filming. The production of the documentary took four years. “There was no schedule,” Stiefel said. “We continued to filter through this until there was a film.”
Now, Alper and her mother have a much better relationship, with Alper talking to her mother multiple times a day. She continues to create — and sell — her art.
“I’d like to have my own place to live,” Alper said following the screening. “I’d like to have a partner, who lives next door. I wish to be able to express myself when I want to.”
Lauren Appelbaum is vice president of communications of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for and with people with disabilities. She can be reached at LaurenA@RespectAbility.org.
In my role as Founding Executive Director of the Jewish Los Angeles Special Needs pooled Trust, I meet with many older parents, mostly mothers in their 70s and 80s, who are still taking care of their middle-aged adult children with a range of serious disabilities, from autism, traumatic brain injury to bi-polar mental illness. Read more here
Two years ago, I met Steven, 72, when he walked into the JFS Freda Mohr Center on Fairfax Boulevard asking for help from the Jewish Los Angeles Trust (JLA Trust), a new community-based nonprofit created to assist people with disabilities. Steven was wearing a pair of old, frayed black leather shoes barely held together by tattered shoelaces, matched by an equally worn leather belt.
His life was constricted by poverty. He had grown up in an upper-middle class Jewish home on the Westside and excelled academically but was then brought low by severe mental illness. He had recently inherited $36,000 from a deceased aunt’s life insurance policy. Because all but $30 of his monthly Supplemental Security Income (SSI) check went toward his rent, food and medication management at a local board and care residential facility, he was never able to save any money toward new clothes or shoes. He also counted on his Medi-Cal health insurance for prescription drug co-pays and ongoing mental health treatments.
Steven was a smart guy; he knew that SSI rules prohibited single beneficiaries from having more than $2,000 in assets. How could he legally keep that $36,000 without jeopardizing his twin lifelines of SSI and Medi-Cal? He didn’t have the money to consult with an attorney and no living relatives to turn to for help. Someone at his aunt’s insurance company suggested that a pooled special needs trust might be the right solution for him.
Created by Congress in 1993, pooled special needs trusts must be administered by nonprofits and use a “master trust” legal document. Clients enroll by signing a simple legal agreement and paying a modest enrollment fee. Private funds are deposited into a sub account for each participant and are pooled only for management and investment purposes. Clients receive professional trustee services, typically received only by the very wealthy who have in excess of $750,000 to open a stand-alone special needs trust.
“I witnessed the transformative impact of supplementing clients’ meager benefits.”
JLA Trust had only been in operation for a few months at that point, so Steven enrolled in our first party pooled trust as client No. 005. Although it may sound corny, his life really took a turn for the better after enrolling. He was finally able to buy new shoes and clothes, get a monthly bus pass and sign up for a monthly cellphone plan. Then, after he discovered an additional life insurance policy that named him as beneficiary and he added those funds to his trust account, he was able to rekindle his passion for jazz and classical music. For the first time he decades, he could go to jazz concerts, hear the L.A. Phil, even take a cruise designed for jazz aficionados. He is now a regular at local jazz clubs and has made friends with other jazz enthusiasts.
As the founding executive director of JLA Trust, I witnessed the transformative impact of supplementing clients’ meager government benefits many times. There’s the young adult who suffered from a stroke and is relearning how to do everyday tasks; he uses the supplementary funds from his GoFundMe campaign for outings in the community and for music therapy. Our oldest client has outlived all his friends and family members and uses his special needs trusts from a legal settlement to pay for private case managers who drive him to his doctors’ offices and take him out of his senior facility for the occasional lunch.
At our free monthly Open House events, I explain that government programs for people with disabilities are designed to get people only to the federal poverty level, and that the maximum SSI grant in California is $950 for most adults over the age of 18. Out of that amount, recipients are expected to pay for rent, food and basic utilities, which is completely unrealistic in our state. And to make matters worse, SSI’s byzantine rules don’t even let someone else pay for rent, food or basic utilities without penalty, typically a deduction of $250 a month.
Our pooled special needs trusts can’t solve all the problems of our broken system, but they can offer a higher quality of life.
Los Angeles County has wrongly canceled Medi-Cal coverage for thousands of residents, often leaving them without access to healthcare and needed medicines, a judge has ruled. For more, read full article.
"We know that individuals with intellectual and developmental disabilities are having longer lives and beginning to outlive their parents,” said lead author Meghan Burke, a professor of special education in Champaign, Ill. “When a parent can no longer provide care or passes away, that’s a crisis situation for the family. We have to start planning for the future and that transition.” Read more here
Say hello to George Guerrero, our liaison at True Link Financial! He's here to tell you about the True Link card, which is a reloadable Visa card that allows you to financially support and protect your loved ones while also providing them with independence. Click here for his video
Pooled Special Needs Trusts are one of the many options one can choose when deciding on the type of Special Needs Trusts and may be a great option for you and your family. Jennifer Lile, in the video below, discusses the nature of a Pooled Special Needs Trust and how it may be beneficial.
Published by Brian Robson from The Simple Dollar
As many know, raising a child is a joyous but tough task with many special and stressful moments. However, the fact remains, raising a child is expensive, especially for those who are special needs. Recently, in the Simple Dollar, Brian Robson discusses the importance of planning and providing for children with Special Needs.