Written by: Amy Han, FCSN Voices Youth Reporter

FCSN was established in 1996 by ten families with children with special needs who wanted to build an inclusive community, and above all, support each other. Nearly 3 decades later, family support remains a priority for FCSN. Each week on Saturdays, FCSN organizes Family Support Gatherings, rotating between the FCSN South Bay center and the FCSN Headquarters. These family gatherings are places of connection and education, offering parent seminars on important topics, enrichment courses for children, and ending with a shared dinner. 

The seminar topic on November 22 focused on major Medicaid updates. Medicaid is currently undergoing some of the biggest changes the U.S. has seen in decades. Under H.R.1, the “One Big Beautiful Bill Act,” over $1.3 trillion will be cut from healthcare and food support, leaving nearly 17 million people nationwide and 3.4 million in California alone without health insurance. These budget cuts are especially harmful for the special needs community. “We know that one-third of all special needs services are paid for by Medicaid, so with the cut on Medicaid for people with special needs, that means 1/3 of the services they receive on a daily basis will be cut.” FCSN Vice President and Co-Founder Anna Wang said. 

Concerned by the implications of H.R.1, South Bay Seminar Coordinator and Parent Volunteer Yvonne Liu reached out through email to invite Jennifer Lucas, Manager of the State Council on Developmental Disabilities from the Central Coast Office, to lead a discussion on policy changes. Lucas’ goal was to clarify what has happened, what to expect, and what advocacy steps families should take. “Some [families] are more in tune with the information we need to know … and some are less informed. That’s why we have the seminar,” Liu said. 

Lucas’ presentation was largely informational, walking families through the H.R.1 updates, a detailed timeline of expected policy shifts, and the impacts that these cuts will have on healthcare access. She explained how states might respond to decreased funding and why changes to the healthcare safety net will ultimately strain the special needs community. She also highlighted specific impacts on immigrant families. “I hope they walk away with not feeling stressed, with understanding that there’s no cuts that are happening yet…,” Lucas said. Throughout the seminar, Lucas welcomed questions and encouraged parents to share their thoughts. Families asked about timelines of the expected budget cuts, hearings, and immediate next steps.

Most adjustments made in H.R.1 are not yet in motion, and larger cuts are expected to take effect on January 1, 2026. A significant portion of Lucas’ discussion board focused on actions families can take now: build stronger advocacy skills, reach out to local legislators through letters and town halls, and stay informed. Audience members were given resources to reach out directly to the State Council for guidance and appeal health insurance terminations when needed. “The biggest takeaway for anybody is understanding how powerful your voice is … as a group, when people come together with a similar focus and share their personal, individual stories about how important those Medicaid services are to them…That’s what can make changes happen. Stories are memorable and they matter,” Lucas said. 

FCSN has always had a long history of advocacy. Beginning in 2002, FCSN organized full bus trips of parents to Washington to meet with legislators to speak up for the special needs community. Although COVID-19 temporarily paused these efforts, Wang is considering forming smaller parent groups to attend local legislative meetings and create resources for parent policy education in response to current Medicaid changes. “I think FCSN will start educating the parents on how to do advocacy, because having one-third of the special needs budget cut is very devastating, and … having no health insurance is again, very devastating,” Wang said. 

While the parents immersed themselves in the seminar, their children participated in art and social activities in recreational classes throughout the center, taught and supervised by student volunteers. Laughter filled the hallways as parents were given the time and space to focus on connecting and understanding how policy changes would affect their families. 

Events like November 22’s Family Gathering play a huge role in helping families understand complex policy changes that can directly affect their special needs child. Many parents expressed that the presentation was able to clarify the Medicaid situation. This particular Family Gathering was successful, reflecting the supportive community that FCSN has built for the special needs community, and demonstrates how Family Gatherings embody FCSN’s core value of empowerment during times of uncertainty.

Graphics:https://drive.google.com/drive/folders/1ztI8JMr59PkqeFS2ENZC_U510E1WpB-r?usp=sharing