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.
Have you visited one of our open houses yet? Held on the last Friday of every month, these sessions give you the opportunity to learn about government benefits and pooled trusts in a small group setting. Recently, we had the Jewish Journal join us and create some educational videos on these topics. Interested in learning more? View the videos below and then sign up for the next Open House on June 30th!