STAATSBURG – Anderson Family Partners, comprised of parents of children and adults who are students and/or residents at Anderson Center for Autism, hosted a legislative breakfast to shed light on challenges inherent in caring for people with severe Autism that is often marked by SIB (self-injurious behavior).
The audience included elected officials such as Assemblywoman Barrett and Senator Serino, along with thought leaders like ABC News Correspondent John Donvan, co-author of In a Different Key, as well as families, community members, and staff.
“Anderson Family Partners (AFP) Advocacy exists as a voice for that portion of the Autism Spectrum that is under-acknowledged and misrepresented in public discourse and legislative action. As a group, we have journeyed to Washington and Albany, visiting Legislators where they work. As a result of these experiences we have grown in number and become more educated to the process. By turning to a grass roots, heartfelt presentation, we hoped to seek ongoing support from our neighbors and thank them for their collaborative efforts. We will continue to grow and will continue to advocate on all three levels. We believe that families are the most powerful and effective advocates. Our authenticity is undeniable,” explained Tondra Lynford, parent and member of the Anderson Foundation Board of Trustees.
The event included a film produced by Anderson parent Andrea Lambe, “which was created to demonstrate that people with Autism Spectrum Disorder aren’t ‘Rainman’,” as Eliza Bozenski, director of Anderson Foundation for Autism, said. “We want people to understand what more profound cases of Autism really look like, what struggles families endure, and what steps our broader communities and legislators need to take to support the countless people impacted,” Bozenski added.
Residence manager for adult services at Anderson Center for Autism Justin Reznik also made a presentation on the realities of running a house for several young men with Autism, a neurological disorder for which 1 in 68 people receive a diagnosis. “As direct support professionals, we make meals, attend to hygiene needs, administer medication, and make sure they spend free time appropriately. We try to teach them how to do things themselves; it can sometimes take weeks or months just to help them understand the very first step in doing something for themselves though,” Reznik explained, adding that agencies like Anderson Center for Autism are significantly understaffed due to low pay.
Also incorporated into the event were presentations by parents who wished to address needs for children aging out of school programs and transitioning into adult years, as well as the aging population of middle-aged adults. Parents described the fear of not knowing who will care for their loved ones when they are gone.
CEO and executive director Patrick Paul said of the event, “we believe that in addition to providing educational, vocational, and residential services to people with Autism, we also have a larger responsibility to help educate legislators and the general public about what we need going forward – so that along with other colleagues and agencies in the field, we can help them enjoy the highest quality of life possible. We also hope that these types of events generate dialogue about how folks can be more accommodating and supportive – not only for those diagnosed but for their families as well.”
For more information, call 845.889.9208 or visit andersoncenterforautism.org.