Dear The Arc of Illinois Community,
One of the most impactful parts of this role - and honestly, one of the greatest honors of my life - has been meeting people I never would have crossed paths with if the universe hadn’t put me on this journey. In the past year alone, I’ve met hundreds of families, parents, and self-advocates whose stories have moved me, changed me, and fueled this fight in ways I never imagined.
Recently, while visiting LARC, I met Shannon. She’s a mother to DJ, a young man with I/DD and Autism, and her words stayed with me long after I left that day. With her permission, I’m sharing parts of her story here, because it deserves to be heard:
“DJ has I/DD and Autism and was diagnosed early, at age 2 - not without first firing a pediatrician who dismissed me as a nervous first-time mom. DJ is my hero. His faith in Jesus is that of a child, and I’m so blessed to be his mom. Life hasn’t been easy, but at the end of the day, we find something to give thanks for.
We are forever thankful for DJ’s Medicaid waiver. Those 18 months between aging out and PUNS selection were full of tears. He went from structure and friends to sitting at home with his iPad. Now, thanks to his day program at LARC, he has new friends, goes on community outings, and brings purpose to others.
I’m not working right now because I need to care for DJ, but that’s not a long-term solution. If we lose the waiver, I don’t know what happens when I have no choice but to go back to work.
When you spoke about parents just wanting to be able to die, I wanted to run up and hug you. I have strong faith, and I’m trying to prepare for the day I’m not here, but I can’t even let my mind go there without being reduced to tears.”
I’ve heard hundreds of stories since joining The Arc, but Shannon’s hit a nerve - because in so many ways, it mirrors my own. I remember feeling alone in the chaos of my son's behavioral crises. I remember questioning my worth, my strength, even my ability to survive. I’m a cervical cancer survivor - and I honestly felt like I survived something that was meant to take me, only to feel like I was failing at the very thing I believed I was born to do: be a mother.
But somehow, I got up. Just like so many of you do. You get up and perform miracles every day, often unnoticed, unfunded, and unsupported.
And then, when you’ve finished fighting like hell for your own child, you turn around and fight like hell for someone else’s. That’s what makes this community so special.
This month, The Arc of Illinois joined 38 organizations across the state to sign a unified letter of opposition to proposed Medicaid cuts - through Justice in Aging, a national nonprofit that defends older adults and people with disabilities from poverty and injustice. As I read through the list of signers, I realized something: I haven’t met all these groups yet. But I will.
Because the only way we protect this vital, fragile system is together. If The Arc of Illinois is going to keep shifting policy, elevating lived experience, and standing up when it counts, we need your voice in the room. Not just behind the scenes, but in the spaces where decisions are made. Your story matters.
We don’t need perfection - we need truth. We need each other. When families, self-advocates, providers, and allies show up together, we become more than a coalition. We become a force no system can ignore. If you’ve ever wondered whether your voice counts, let me be clear:
It does. And it’s time.
Join us. Be part of The Arc of Illinois.
Because when we rise together, we don’t just fight for the future - we shape it.
With love, respect, and relentless solidarity,
Samantha M. Alloway
Executive Director, The Arc of Illinois |
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