SNA Members Play Active Role at ASA Conference
SNA’s Marielle Hazen (l.) with Amy Goodman, co-director of Autism Now, at the SNA booth.
Six SNA members recently shared personal experiences and legal insights with attendees of the 44th Annual Autism Society National Conference and Exposition in Pittsburgh. During a half-day, pre-conference workshop, a “two dads and a sibling” presentation and exhibit booth conversations, they offered a strong grounding in special planning basics. Topics included government benefits, special needs trusts (SNTs), guardianship and alternatives, adult services and the Affordable Care Act.
“Families face so much uncertainty about their kids’ futures,” said Brian Rubin, Buffalo Grove, Illinois, whose adult son, Mitch, has autism. “They were eager to understand their options regarding post-high school services. And, of course, they were concerned about the possibility of government cutbacks.”
“Likely shifts in the benefit and service landscape mean that SNTs should be flexible enough to accommodate as many scenarios as possible,” said Janet Lowder, Cleveland, Ohio. “SNT trustees should be chosen with great care, because it’s a long-term commitment and more demanding than most other trusteeships.”
“The letter of intent (LOI) may not be a legal document, but it’s crucial,” declared Benji Rubin, Buffalo Grove, Illinois, who Brian’s son and younger brother to Mitch. “Don’t assume that siblings automatically know everything necessary to care for a family member with special needs. There’s no way they can be aware of all the details that have become second nature for parents over the years.” The LOI should act as a blueprint for trustees and other caregivers, including medical information, educational history, personal preferences and other advice. “Sometimes knowing what not to do can make all the difference. If there are buzzwords that upset your loved one, include that information.”
“Once someone leaves high school,” explained Marielle Hazen, Harrisburg, Pennsylvania, “the services available to them change dramatically. Housing, employment and day habilitation are just some of the issues that parents should be considering long before school-based services end.”
Jim Caffry, Waterbury, Vermont, whose 13-year-old son, Duncan, has autism, advised parents to learn about their state systems early and to advocate for changes they feel are necessary. “I know it can be frustrating when you’re turned down concerning something important for your child. But you’ll be more effective if you’re polite, persistent and calm so that you can ask a few pointed questions. Find out what policy, regulation or law is the impediment. You can use the Freedom of Information Act and Administrative Procedures Act to get details concerning how and why certain steps were taken. Then you’ll be able to be able to develop a strategy.”
Julian Gray, Moon Township, Pennsylvania, joined the others in staffing SNA’s well trafficked exhibit hall booth. “We fielded lots of questions throughout the conference,” he said. “This is such a complex area of the law and there are such differences between states. If we weren’t personally familiar with a specific state’s policies, we made sure that people understood how to get their answers.”