Family Support Research and Training Center

The National Association of Rehabilitation Research and Training Centers hosted its annual conference in April in Washington, D.C. The purpose of the conference is to share the latest research findings, training and knowledge translation methodologies and results related to enhancing interventions, programs or systems to improve the lives of people with disabilities.

One of FSRTC's research assistants, Svetlana Mitric, attended the conference and presented a poster presentation about FSRTC. Conferences are a great way to share information, learn from others, and make connections. Svetlana was also able to connect with Dr. Sandy Magaña. Sandy was a guest on the 4th episode of our podcast, Family Support Stories!

(ID: Picture of FSRTC Update post with two pictures. One of Svetlana Mitric in professional suuit standing by FSRTC poster. Second pciture of Svetlana Mitric with Sandy Magana."

In this episode of Family Support Stories, we speak with authors Dr. Helen Rottier and Dr. Morton Ann Gernsbacher about their joint book chapter, titled “Autistic Adult And Non-autistic Parent Advocates: Bridging the Divide”.

Tune in to explore the separation and merging of goals and discussions between autistic self-advocates and non-autistic parent advocates, and the potential priorities that can bridge previous divides to create space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people, their families, and communities.

Image discription: Blue background image with white text "Episoide 7 Now Streaming! Family Support Stories Bridging the Advocacy Divide" Two photos shown. Left: Helen Rottier, Right: Morton Ann Gernsbacher.

Strive to Thrive is a research project about what helps people with IDD and their families do well. We’re asking what helps families move from surviving to thriving.

To help answer this question, we searched research papers using keywords about thriving. We found some barriers to thriving, or things that make it harder to thrive. We also found facilitators to thriving, or things that help them to thrive.

Explore this post to learn more about what we found !

You can also review the entire brief at this link: https://uofi.app.box.com/file/2079257553448?s=hg9qrwf6hms5gkx6isffqmc33hmedfjm

How Medicaid Home and Community-Based Services (HCBS) Support Aging Individuals with IDD and Their Aging Caregivers

When: Tuesday, March 17, 2026, 3:00pm CT / 4:00pm ET
Where: Zoom (virtual)

This presentation will provide an overview of the AUCD HCBS Special Interest Group (SIG) and its recent work. Presenters will discuss national trends in Medicaid Home and Community-Based Services (HCBS) for aging individuals with intellectual and developmental disabilities (IDD), including implications for caregivers. The session will also review the HCBS Settings and Access Rules and how these policies promote community integration, person-centered planning, and equitable access to services for aging adults with IDD.

Register here: https://us06web.zoom.us/meeting/register/2l_I0YN1QzCSbFsrmBnDDg

Thank you to everyone who attended our webinar today, Thriving in Families of People with Intellectual and Developmental Disabilities!

If you missed it, you can find the slides here: https://uofi.box.com/s/928avzz9f3qhfp9mk76euezgwfg9m4fa

And sign up to join our mailing list to keep up-to-date on future developments of the Strive to Thrive research project: https://go.uic.edu/FSRTCMailingList

Join us February 24 at 11am CST for our webinar Thriving in Families of People with Intellectual and Developmental Disabilities!

go.uic.edu/strivetothrive22426

Svetlana Mitric

Reminder to join us February 26 for a webinar on Family Quality of Life!

University of Illinois Chicago Campus | Video Conferencing, Web Conferencing, Online Meetings, Screen Sharing - Zoom Zoom unifies cloud video conferencing, simple online meetings, and cross platform group chat into one easy-to-use platform. Our solution offers the best video, audio, and screen-sharing experience across Zoom Rooms, Windows, Mac, iOS, Android, and H.323/SIP room systems.

Reciprocity in Families
Thursday Wednesday February 11
2pm-3pm CST.

Join us for an interactive webinar in partnership with Self Advocates Becoming Empowered- SABE that explores what reciprocity looks like in real family life. What does reciprocity really mean in families? Reciprocity is about give and take. It's about how family members both offer support and receive support from one another over time. In families of people with intellectual and developmental disabilities (IDD), this can look many different ways and may change across the life course.

Through conversation and shared experiences, we’ll talk about how support can be mutual, meaningful, and empowering for everyone involved.

You’ll hear from:

Nicki Donnelly and her brother Rob, siblings and roommates, sharing their lived experience of supporting one another

Priscilla Battle, a mom and grandma who speaks to the reality of both giving and receiving support within her family

Participants will be invited to engage, reflect, and share their own perspectives throughout the session. Whether you are a self-advocate or family member, this webinar offers a welcoming space to learn, connect, and rethink what support in families can look like.

Register Now!: http://go.uic.edu/ReciprocityWebinar

According to the NCI State of the Workforce for IDD (NCI-IDD SoTW)® 2024 report, on average, 26% of agencies report they turned away or stopped accepting referrals due to staffing issues, down from 38% in 2023. While this decline is promising, this data shows that 1 in every 4 agencies have to turn people away. We know that people often spend years waiting to access services, and ongoing staff shortages make it harder for people to access quality care.

To address staff shortages, lots of provider agencies are working to enhance their recruitment and retention efforts. Check back tomorrow for some data showcasing how agencies are working to find and keep good DSPs.


Nasddds HSRI

“Check out our Stakeholder Advisory Taskforce member, Nicole Leblanc, in the New York Times! We agree wholeheartedly that the r-word is harmful and choosing respectful language matters. Nicole said “using disrespectful language like r-word impacts society’s view of people with disabilities, especially given that people with developmental disabilities are 20-80x more likely to be abused than general population, plus many especially late diagnosed adults with autism who often experience bullying over course of their lives. Language matters how u use it, it can lift a person up or tear a person down.”

Read the whole article here: https://www.nytimes.com/2026/01/26/us/r-word-slur-disability.html?unlocked_article_code=1.HlA.ZxbG.PRzffzCfPoCw&smid=nytcore-ios-share”