Unfixable Realities

My head is spinning from all the information I’ve been absorbing over the past two days while attending the national Special Needs Trusts national conference in St. Petersburg, Florida, sponsored by the Stetson School of Law. The conference is geared for attorneys who specialize in special needs trusts, so the fact that I didn’t attend law school may be a factor. But the conference also included an intensive workshop for Pooled Special Needs Trusts administers.With funding from a Cutting Ege grant from the Jewish Community Foundation of Los Angeles ( a big thanks!) and the  fiscal sponsorship of Bet Tzedek, I am now working with a great group of people to establish a pooled special needs trust Los Angeles, which will be known as the Jewish Los Angeles Special Needs Trust.

Much of the legal discussion at the conference was focused on best ways to help clients with serious disabilities obtain all the government benefits for which they are eligible, and the level of detail needed to successfully get and keep those benefits borders on a satricial piece you might read at The Onion.

For example, to apply for SSI (Supplemental Security Income), the main source of income for people with disabilities who can’t work, applicants need to know the difference between unearned income, earned income and in-kind support and maintenance. SSI is designed to pay for the basic costs of shelter and food, and if you use the money for any other purchases, you can get dinged. If you go over the maximum allowable assets of $2,000 a month, you get dinged. If your parents help pay for your rent, you can get dinged. You get the picture.

A Special Needs attorney from Vermont, who himself is the father of a son with autism, said that the tiny state of Vermont, with only 600,000 people in the whole state, has four different state programs for people with disabilities: one for people with intellectual/developmental disabilities including autism, one for physical disabilities including blind and deafness, one for persons with serious mental illness and one for persons with traumatic brain injury, and each one of those has different rules and services.

Because our federal and state laws have resulted in a highly fragmented, very complicated system of government programs for people with disabilities, it means that you really do need an attorney to help you successfully navigate these systems (or win an appeal), but of course the people who need the help the very most are low-income families, who often can’t afford the private attorney fees, even at discounted rates. Many of the attorneys do try to provide some pro bono assistance when they can, but they need to make a living, and tend to make much less than their legal peers who specialize in far more lucrative specialties. Nonprofit legal services such a Bet Tzedek and Disability Rights California do a great job in filling in some of these gaps, but they are understaffed and overloaded with clients.

As one Special Needs Attorney said in a panel discussion, “Everyday, we are dealing with three different unfixable realities—a lifelong disabling condition, taxes and death.” The dedication, knowledge and expertise of the cadre of attorneys and pooled special needs trust administrators that I met at the conference was very inspiring to me. Their individual professional work is mitigating some of these tough challenges, and the comblined impact of their advocacy work results in in a better quality of life for persons with disabilities, along with their parents, siblings and other family members.