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Community Members Brave the Cold for Chicago Town Hall

Thursday night saw the continuation of the national series of Adult Services Town Halls focused on Housing and Residential Services at DePaul University in Chicago. Over 160 attendees braved subzero temperatures to learn more about local resources and supports for adults with autism. Attendees included self-advocates, local autism service providers, families, local educators, students and other members of the community – all understanding the need to work together to create viable housing solutions for our loved ones with autism.

Attendees filled the hall where the Resource Fair was held, visiting with close to 20 autism service providers from throughout the Chicagoland area, including housing and residential service providers, employment providers, schools and more, receiving pertinent information and networking with local providers and other attendees. Additionally, all attendees received state-specific information about funding opportunities and resources in Illinois, along with a comprehensive guide to navigating the system from panelist Ed McManus.

Following the Resource Fair, the moderated panel discussion allowed attendees to hear from local experts and learn more about the process of obtaining housing and residential supports for adults with autism. The event began with Laurie Chern, parent of a 13-year-old on the spectrum and Chicago Chapter Board Chair welcoming the audience. She shared that like her, many families in the audience may be asking themselves, “What options does my child have? What are some of the possibilities and solutions?” She stressed the importance of utilizing information and education to help answer those questions.

The panel discussion was moderated by Gene Bensinger, a parent advocate and Chapter Board Vice Chair. Gene outlined the need to talk about housing and community living for adults with autism. He acknowledged that an adequate infrastructure of person-centered choices do not exist near the scale the autism community needs. He did, however, encouraged the audience that there are “tremendous opportunities to develop new and better options for our community” urging the audience to comment on Illinois’ proposed changes to Medicaid Home and Community Based Services (HCBS).

The moderated panel featured Ed McManus of McManus Disability Consulting, Sheila Lullo of Clearbrook, Julie Tracy of the Julie and Michael Tracy Family Foundation and Ben Scott, a self-advocate that receives services from Esperanza Community Services and accomplished musician and lead singer of the band, The Midnight Rain.

The panel offered practical advice on navigating the system and information on local programs and services and innovative housing models. Ed McManus provided the audience with an overview of navigating the system, discussing available services, how to obtain them, and eligibility.  Sheila Lullo described how Clearbrook has grown and developed its residential and adult services to be more individualized to better meet the needs of individuals with autism. Julie Tracy described how she and her husband, Michael, their team and dedicated community partners created an innovative service provider organization for young adults and adults with autism. For those preparing to search for housing and residential supports and for those looking to develop innovative solutions, she asked the audience to “envision what their loved one’s best day would look like and work backwards from there.” She offered words of encouragement to attendees, urging everyone in the room to not give up.  Ben Scott shared the pride he feels living independently. He discussed how the services he receives allow him to be employed, meet people in the community, and live as independently as possible. Ben acknowledged that despite some of the challenges individuals with autism may experience, they also offer “incredible gifts and talents.”

After the panel discussion, attendees asked a variety of questions about different services in their areas, understanding the ABLE Act, obtaining Medicaid waiver services, local providers that could help navigate the process and how the new CMS rules will change current and future residential facilities.

As the Q&A wrapped up, Gene Bensinger reminded the audience to “reach out to others for good information and support as you shouldn’t have to do this alone.”

The evening closed with a special live performance from Ben Scott, who wowed and inspired the audience with a song from his band Midnight Rain’s new album. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.