The Strength We Still Hold

Dear Fellow Advocates, 

Sometimes I feel like I should start these updates by telling you to take a deep breath - because what I’m about to share is heavy, it’s real, and it matters deeply to our community. Also, because the yoga teacher in me reminds me that one of the greatest powers us humans have is to control our breath.

You may have recently seen an important alert from our friends and partners at the Illinois Council on Developmental Disabilities (ICDD), the Institute on Disability and Human Development (IDHD) at the University of Illinois at Chicago and Equip for Equality (EFE). Together, these organizations make up the DD Network, a triad of powerful programs established by federal law to support, protect, and empower people with developmental disabilities.

But now, that very foundation is at risk. A draft proposal from the White House Office of Management and Budget (OMB) was recently leaked, suggesting the elimination of funding for all three of these essential programs. If enacted, the federal budget would completely defund:

• State Councils on Developmental Disabilities like ICDD, which support advocacy, independent living, and employment initiatives
• University Centers for Excellence in Developmental Disabilities (UCEDDs) like IDHD, which train health providers, conduct groundbreaking research, and build better services
• Protection and Advocacy Systems like EFE, which safeguard the rights and legal protections of people with developmental disabilities across Illinois

These programs were created by the Developmental Disabilities Assistance and Bill of Rights Act, passed by Congress in 1975 to make sure people with disabilities have access to opportunity, protection, and real inclusion in our society. For nearly 50 years, the DD Network has been a pillar of support. Without it, individuals and families across the country could lose access to life-changing services and protections.

House Republicans have also released a broader budget proposal that includes:

• $715 billion in cuts to Medicaid, which millions of people with disabilities rely on
• Over $1.1 trillion in cuts to critical safety net programs, including SNAP, housing assistance, and home- and community-based care
• Work requirements and extra paperwork that could strip coverage from caregivers and people with disabilities
• Restrictions on state-funded services for non-citizens, and penalties for states that continue to provide them
• Cuts to services like in-home supports, day programs, and Early Intervention here in Illinois

Governor JB Pritzker has warned that up to one million Illinoisans could lose coverage under these proposals. That includes children. Parents. Caregivers. Grandparents. That includes us. The good news is that none of this is final. There’s still time to make noise. Still time to organize. Still time to share your truth!

I know how exhausting this is. If you’re a self-advocate, a provider, a parent, a professional - if you’re someone who’s been navigating the system day in and day out - you’re probably already stretched thin. And now here we are again, being asked to fight to protect the basic rights and supports we’ve already worked so hard to secure.

If I can be human with you for a moment, yesterday I hopped on a call with Director Tonya Piephoff, and the moment I joined the call, I started to cry. It just hit me how heavy this feels and how hard it is to carry. And she reminded me that it feels heavy because I care. And that meant the world to me.

So let me remind you, too: your mental health matters. You matter. May is Mental Health Awareness Month, and I can’t think of a more important time to pause and remember that amid all the advocacy, all the policy work, all the organizing - we have to take care of ourselves too.

At The Arc of Illinois, we see how hard you’re working. We see the effort, the fear, the sacrifice, and the grit. And we want you to know you’re not alone. I'm proud to share that starting in June we’re launching a new Parent & Guardian Group and expanding our Self-Advocacy Training Series, led by people with lived experience. These programs are meant to make sure our stories - the real, human, everyday stories - aren’t just heard, but leading the way.

Because this fight isn’t just about line items in a budget. It’s about people. It’s about us. And we won’t stop reminding policymakers - and the world - that our voices belong at the center of every decision that affects our lives. If today feels heavy, it’s because it is. But we are not powerless. Together, we are strong. Together, we will speak up. And together, we will fight for the future we all deserve.

Take Action Now! Contact your Congressional Representative today and tell them why Medicaid is imperative to the I/DD community!

With gratitude and deep respect,

Samantha Alloway
Executive Director, The Arc of Illinois 

Partnering for Possibility: Eva’s Advocacy Journey Begins!

At The Arc of Illinois, we believe early transition planning can open incredible doors. Eva is a shining example of what’s possible when schools, families, and advocacy organizations come together to support young people with disabilities.

Earlier this year, Stevenson High School held a transition planning meeting with Eva and her team. During that meeting, Eva expressed a strong interest in becoming a self-advocate. That conversation marked the beginning of something truly inspiring.

Last week, we had the pleasure of meeting Eva and her family. During our time together, Eva confidently shared her story, asked thoughtful questions, and impressed us with her curiosity, enthusiasm, and passion for making a difference, not only for herself, but for others as well.

What began as a simple introduction quickly became the starting point for Eva’s advocacy journey. This summer, she will begin self-advocacy training with The Arc of Illinois. We are also excited to share that she has already been invited to speak at the Speak Up Speak Out conference this fall!

We are honored to partner with Stevenson High School to support Eva as she takes these exciting first steps. This opportunity highlights the power of early, person-centered transition planning and the impact it can have when we empower young people to lead.

Additionally, The Arc of Illinois would like to thank our friend and outstanding colleague Laura Fine for making this connection and for impacting countless lives with her heart and advocacy.

Way to go, Eva. We are cheering you on every step of the way!

Urgent: UPDATE TO CUTS TO MEDICAID!

Urgente: ACTUALIZACIÓN SOBRE LOS RECORTES DE MEDICAID

Save the Date for the 2026 Executive Leadership Conference!

June 11-12, 2026

Change of plans, the Executive Leadership has been postponed. Save the date for 2026! We’re booked for June 11 – 12, 2026 at the DoubleTree Hotel in Lisle, IL. 

We’re excited for the line up and energy for next year and hope to see you then!

NEW UPDATES: SOCIAL SECURITY ADMINISTRATION (SSA)

NUEVAS ACTUALIZACIONES DE LA ADMINISTRACIÓN DEL SEGURO SOCIAL (SSA)

Introducing the Family Support Group Webinar!

June 24, 2025

5:00-6:00 PM

VIRTUAL WEBINAR

We’re excited to invite you to our upcoming Family Support Group Webinar — designed especially for parents, family members, and caregivers of loved ones with intellectual and developmental disabilities.

This is more than just a webinar — it’s a chance to connect with others who truly understand your journey. Whether you're looking for support, resources, or simply a place to be heard, this community is here for you.

Stay tuned for all the details and information!