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Dear Fellow Advocates,
In times of change, I am reminded of the powerful thread that unites us as advocates: our shared commitment to ensuring individuals with disabilities have the same opportunities to live meaningful and fulfilling lives that we all strive for. Whether you're a self-advocate, a parent, a sibling, a guardian, a teacher, a family member, or a concerned citizen, we are all united by a deep responsibility to secure access to the programs and services that make this a reality.
With discussions around potential changes to Medicaid and healthcare policy looming, I know how unsettling the uncertainty can feel. Programs like Medicaid aren’t just safety nets. They’re lifelines for countless families across Illinois and the United States. Worry, anxiety, and even fear in these moments are valid and real. But if there’s one thing I’ve learned through this journey called life, it’s this: our unity is our greatest strength, and we are far more alike than we are different.
For 75 years, The Arc of Illinois has been amplifying voices, advocating for change, and ensuring families have a seat at the table. Yet, time and again, family voices are not given the weight they deserve in the rooms where decisions are made. The I/DD services field is filled with exceptional professionals whose expertise is invaluable, but one truth remains: no degree, title, or credential can truly capture the real-world challenges of raising a child with a disability or living with I/DD.
Our industry is rich with knowledge, waivers, programs, services, and the endless acronyms that define the I/DD world in Illinois. But as a parent, I can tell you this: no amount of expertise can replace the daily reality families face. The struggle to secure housing, the balancing act of maintaining a job while caregiving, the sleepless nights spent worrying about the future, and the fear of what will happen when we’re gone - none of these can be understood through knowledge alone.
Your stories hold a power that no policy ever could. They are the heart of this movement, and they need to be heard. That’s why in 2025; The Arc of Illinois is evolving. We’re becoming storytellers and story collectors, committed to gathering and amplifying the voices of families, self-advocates, and caregivers across Illinois. Your experiences - raw, real, and powerful - will become the foundation of our advocacy. Together, we’ll share these stories with legislators, decision-makers, and anyone who needs to understand what’s at stake. We’re not just fighting for policies and programs; we’re fighting for respect, for representation, and for our rightful place at the table.
This is our year to rise stronger, speak louder, and unite with purpose. We need you. Your voice, your story, and your truth to drive the change we’re fighting for. Let 2025 be the year we show the world our worth and why our experiences demand not just respect, but action!
Advocacy is found in the courage to share our stories, the data that compels change, and the undeniable strength of standing together. Whatever your role, remember: you matter, and your voice has the power to make a difference.
Let us stay committed to the vision of an Illinois where every person with disabilities can truly thrive! I invite you to connect with me at samantha@thearcofillinois.org. Share your story, your ideas, or let’s collaborate to amplify our collective voice. Together, we don’t just hope for a better future, we create it.
Let’s make The Arc of Illinois’ 75th year one for the history books!
With Respect and Hope,
Truly, Samantha Alloway Executive Director, The Arc of Illinois
Big Announcement!
We're MOVING our home office to Tinley Park this month!
The Arc of Illinois 7550 183rd St Tinley Park, IL 60477
It's not just a change of address – it's a whole new chapter! We can’t wait for you to be part of this journey. Our new space is located at the UCP Seguin office building. We are here and ready to connect, just from a fresh, new location.
Stay tuned for all the updates, new opportunities, and exciting projects we have in store!
Need to reach us? No worries – our phone number is staying the same! You can still reach us directly at 815-464-1832 or through email at info@thearcofil.org.
Meet Your Legislator Q&A Series
Featuring Representative Michelle Mussman
January 16, 2025
6:00 - 7:00 pm
Virtual Webinar through Zoom
Join us monthly for virtual sessions with local Illinois Legislators! These sessions provide an opportunity for you to submit questions, discuss key issues affecting individuals with intellectual and developmental disabilities, and help shape policies for a better future. Don’t miss out!
We’re thrilled to welcome Representative Michelle Mussman for our first session in January!
Get ready for a transformative experience at the QIDP Leadership Conference, available live through Zoom! This virtual event will cover essential topics for QIDPs, including Online Safety, Grief, Artificial Intelligence, and much more. Don't miss the chance to gain valuable takeaways for your career. Register now and be part of the future of QIDP leadership!
Visit the websitefor the full line up of speakers and topics. Click herefor the brochure.
Do you know someone who makes a difference every day in our community? How has this person, organization, or program supported The Arc of Illinois' mission? In what ways have they enhanced the lives of individuals with intellectual and developmental disabilities? If so, celebrate your hidden hero by nominating them to recognize their outstanding dedication and accomplishments!
As we step into the new year, I want to take a moment to reflect on and acknowledge the incredible advocacy you have done over the past year. Your unwavering support and collaboration with the individuals and organizations that make up the Going Home Coalition have been truly remarkable.
You continue to amaze me!
While it’s difficult to capture all of your accomplishments, here are just a few highlights of your many successes:
Collaboration and Support of Legislative Advocacy
Your dedication to supporting and collaborating on legislation championed by other advocacy organizations has been exceptional. Two bills were passed from Going Home Coalition’s legislative priorities.
HB 793 – Dignity in Pay was passed in November’s Veto Session:
This bill eliminates the permission for employers to pay workers with disabilities less than the minimum wage by December 31, 2029
It establishes a Transition Grants Program for 14(c) providers to support them through the transition, with $2 million included in the Governor’s proposed FY25 budget.
The Personal Needs Allowance for CILA residents will increase to $100 per month (from $60), starting January 1, 2025.
Full text of the Bill and its Amendments Click here.
HB 2474 – Antiretaliation Bill (passed in the Lame Duck Session):
This bill allows nursing home residents and workers to voice concerns about care and mistreatment without fear of retaliation.
It also provides protections for people with intellectual and developmental disabilities in nursing homes.
Watch this video that captures the experiences of some of the people who advocated for this bill. Click here.
Full text of the Bill and its Amendments Click here.
Legislative Advocacy Webinar Series
In collaboration with Speak Up and Speak Out Summit, we presented a 9-module legislative advocacy webinar series, which is now archived and available on The Arc of Illinois website: Legislative Webinar Series.
Spanish Translations & Multimedia Initiatives
6 of the legislative advocacy modules have now been translated into Spanish.
We created 11 videos under the Voices of Advocacy, Voices of Change initiative, supported by Grassroots Project funding.
Engagement and Collaboration
Over 100 individuals, organizations, DDD, IDHS, legislators, and staff participated in the Developmental Disabilities Systems Overview meeting.
Our trip to Springfield during Veto Session was productive and a wonderful success! Click here.
Looking ahead to 2025, our focus will remain on creating systems change, building community capacity, and prioritizing person-centered services and supports as we continue advocating for deinstitutionalization in Illinois.
Among our goals for 2025 are continued meetings with DDD, IDHS staff, ICDD, Equip for Equality, guardianship and advocacy agencies, exploring innovative housing models, and supporting waiver transformation, along with other member-driven priorities.
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