Family-to-Family Health Information Center Symposium: Uniting Healthcare, Advocacy, and Disability Virtual Conference | September 17, 2024

9:30 – 10:00 am Welcome and Introduction to Family-to-Family and The Arc of Illinois presented by Susan Agrawal, PhD

10:00 – 11:00 am Navigating the Caregiver Continuum: From Diagnosis to Advocacy Presented by Erica Stearns and Alyssa Nutile This presentation introduces the “caregiver continuum,” a framework that guides us through the various phases of caregiving, from the initial shock of diagnosis to the complexities of long-term care. We’ll explore how caregivers’ needs, challenges, and advocacy evolve, and advocacy and discuss strategies for maintaining mental resilience. You’ll gain crucial insights into delivering personalized support that enhances the well-being of both caregivers and their families, fostering a healthier, better-informed caregiving community.

11:00 – 11:15 am Break 11:15 am – 12:15 pm An Overview of The Autism Program of Illinois (TAP) Presented by Shannon Dyson, TAP Director, and Sarah Anderson, TAP Training Coordinator This presentation will provide an overview of The Autism Program of Illinois (TAP), a grant funded by the Illinois Department of Human Services. TAP serves and supports persons with autism, their families and communities through a coordinated network of providers and university programs while developing, utilizing and sharing best and promising practices. The TAP network providers include 5 university programs and 9 organizations located throughout the state of Illinois.

12:15 – 1:00 pm Lunch Break

1:00 – 2:00 pm Children’s Medicaid Waivers and Paid Parent Caregiving Presented by Susan Agrawal, PhD During the pandemic, paying parents for care became much more widespread. How is it working now in Illinois? First, I will outline the Medicaid programs and waivers available for children under age 22 in Illinois. Next, I will describe which Illinois programs pay parents for caring for children and adults with disabilities. I will conclude with a call to action for improving home and community based services and paid parent caregiving in Illinois. 2:00 – 2:30 pm Advocacy in Action Presented by Stephanie Salinas and Mary Otts-Rubenstein Advocacy in Action will feature two parent advocates discussing how small actions in advocacy led to tremendous assistance to families. Stephanie Salinas describes how her idea to bring a program to pay parents for CNA-level care became a law. Mary Otts-Rubenstein will talk about how she became involved in helping migrant children with disabilities to access services and benefits they desperately need.

2:30 – 2:45 pm Break 2:45 – 3:45 pm Effective Individualized Education Plans: Medical Support and Resources Presented by Megan Mutti, MA, Director, Family Matters Navigating the IEP process can be challenging, and is made even more difficult when your child has medical complexities. Join Family Matters PTIC as we explore resources and supports that can assist you in ensuring that your child’s needs are safely and effectively met within the school environment.

3:45 – 4:00 pm Closing Remark