Loud and Clear: A Special Needs Conversation

SNA to Blend Family and Legal Perspectives at Autism Society Conference

By Jim Caffry, Esq., Waterbury, Vermont

On July 10 in Pittsburgh, from 1:00 to 5:00, six SNA attorneys will explain the world of government benefits, adult services and special needs trusts for attendees of the Autism Society’s annual meeting. But in addition to discussing important legal issues, we’ll be sharing some personal experiences. Two of us have sons with autism, and one of us has a sibling on the spectrum.

“Introduction to special needs planning: Where do we start?” will focus on preparing family members with ASD for adulthood. However, this pre-conference workshop is important for individuals of all ages, because it is never too early to start planning for the future. I realized this when my son, Duncan, who is now 13, was five years old. That’s when my wife and I decided to learn as much as possible about the services and supports available outside of special education services. The services available to adults and children with autism can differ sharply from state to state. We wanted to know what services are (and are not) available in our state and what to focus our advocacy efforts on in the intervening years.

One of the advantages of attending a conference such as this is that you can learn something about what’s offered throughout the country. That way, if you learn of something that’s unavailable in your community but has proven successful elsewhere, you can advocate for change in your home state.

We also realized that we needed to begin right away to formulate a flexible life care plan. We knew there’d initially be lots of gaps to be filled in over the years, but we recognized that one can never predict what will happen, when, to primary caregivers, and that we had to have a framework in place.

The planning terrain is constantly shifting. Budget cuts at every level of government threaten community-based programs that support people with autism. Additionally, since the Affordable Care Act is changing the private insurance landscape, families will need to carefully weigh their options, based on their specific circumstances.

We will be giving attendees a good grounding in federal issues, and we will try to answer state-related questions, as well. If we don’t have the answers, we will point them in the right direction and arm them with the questions that they need to ask when they get home. We will spend a full hour on Q&A—because there are no cookie cutter answers when a family member is on the spectrum. SNA members will also be staffing a booth in the exposition hall throughout the conference, so attendees can come ask us questions throughout the ASA conference.

Posted: June 21st, 2013 | No Comments »

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