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Dear Fellow Advocates,
This Giving Tuesday, we celebrate the power of community, resilience, and giving back. As Executive Director of The Arc of Illinois, I am privileged to work alongside our Board President, Kimberly L. Johnson, our dedicated Board of Directors, and our exceptional team! Together, we strive to empower individuals with intellectual and developmental disabilities (I/DD) to live full, inclusive lives and we are focused on creating person centered care in Illinois.
As a mother of a nine-year-old son with autism spectrum disorder, I’ve experienced firsthand the challenges and triumphs of navigating the world of disabilities. My journey has fueled my passion for advocating for a more equitable society where individuals with disabilities and their families can access the resources, support, and opportunities they deserve.
Thanks to your support, 2024 has been a year of impactful milestones:
Ending Subminimum Wage in Illinois: Together, we’ve taken a vital step toward fair and inclusive employment practices.
Advocating for Home-Based Services: Ensuring individuals with disabilities have the choice and autonomy to thrive in their own homes.
Building Connections: Strengthening relationships with legislators and expanding accessibility through multilingual resources and training programs.
None of this would have been possible without you. Your generosity helps us amplify the voices of individuals with I/DD and provide critical resources to families across Illinois.
This Giving Tuesday, I invite you to continue making a difference. Your tax-deductible donation will directly support our mission to create a world where everyone belongs and can achieve their full potential! Let’s use this day of giving to celebrate the incredible impact we can create when we come together. Your kindness inspires hope, empowers change, and builds a brighter future for all.
From all of us at The Arc of Illinois, thank you for being a part of our community. We are endlessly grateful for your support, and we wish you a joyful holiday season filled with warmth, love, and generosity.
Truly, Samantha Alloway Executive Director, The Arc of Illinois
Today is a special day with two important celebrations! Giving Tuesday aligns with the International Day of People with Disabilities (IDPD), which is celebrated on December 3rd each year. This day serves as a reminder to promote the rights and well-being of people with disabilities worldwide, with the 2024 theme, "Amplifying the Leadership of Persons with Disabilities for an Inclusive and Sustainable Future," emphasizes the crucial role individuals with disabilities play in shaping a better, more inclusive world.
By supporting initiatives on Giving Tuesday, we can contribute to organizations that champion the rights of people with disabilities, helping to amplify their voices and leadership in creating a sustainable future for all.
Let’s work together to make the world more inclusive and accessible for people with intellectual and developmental disabilities!
The Arc of Illinois 75th Annual Convention
Brochure and Registration information coming soon!
This year's focus is on celebrating all we have achieved together, while looking to the future with excitement, determination, and a renewed commitment to driving positive change.
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!
On November 20th, 2024, Carole Rosen, Advocacy Program Specialist, and Greg Walkington, Family Transition Project Director at The Arc of Illinois, had the opportunity to attend the HB 793 Dignity in Pay Bill Executive Committee Hearing!
Pictured L-R: Springfield Capitol Building
Pictured L-R: Greg Walkington, Family Transition Project Director; Josh Evans, IARF President and CEO
Pictured L-R: Carole Rosen, Advocacy Program Specialist, The Arc of Illinois; John Herring, INCIL Executive Director; and Erin Compton
Pictured L-R: Greg Compton; Erin Compton; Senator Laura Murphy (D28); Diane Compton; and Ryan Croke, First Assistant Deputy Governor for Health and Human Services Illinois Office of Illinois Governor JB Pritzker
Later that evening, advocates Hector Renta, April McClees, and John Porter met for a working dinner to rehearse their talking points. They shared their experiences of living in state operated developmental centers, intermediate care facilities, and discussed what their lives are like now in the community.
On November 21st, we hit the ground running!
Teamwork Makes the Dream Work!
Our day began with a meeting with Representative Daniel Swanson (D74). Hector Renta, one of his constituents, was present, and Representative Swanson gifted him a United States flag pin. He will be meeting with Hector again soon!
Pictured L-R: Representative Swanson; April McClees; Hector Renta; Greg Walkington; and John Porter
Pictured L-R: Representative Swanson and Hector Renta
Next, we met with Representative Bob Morgan (D58), who has a brother and sister-in-law with developmental disabilities. He is a strong ally of the IDD community.
Pictured L-R: April McClees, Carole Rosen, Rep Bob Morgan, Hector Renta, John Porter, and Greg Walkington
We toured the Capitol and had the opportunity to observe the Veto Session from the House of Representatives gallery.
Pictured: House of Representatives Gallery
Pictured L-R: John Porter, April McClees, Greg Walkington, Hector Renta, Kyontay Henry
After running into Deputy Governor Grace Hou, the advocates had a productive meeting with Ari Garcia and Allie Mizota, members of Governor Pritzker’s legislative policy team. We were thrilled to hear that HB 793, the Dignity in Pay bill, had just passed the Senate! It was the result of an incredible long-term collaborative effort from many organizations working together to successfully pass the bill.
We also learned that Greg Walkington, Director of the Family Transition Project, had been successfully reappointed to The Quality Care Board! Congratulations, Greg!
John Porter had a pleasant surprise when he ran into his Aunt, Senator Doris Turner (D48)!
Pictured L-R: April McClees, Greg Walkington, Hector Renta, Carole Rosen, Ari Garcia, Allie Mizota, John Porter
Pictured L-R: John Porter and his Aunt, State Senator Doris Turner
At our final stop of the day, we took a photo with Senator Adrienne Johnson (D30) and Senator Mary Edly-Allen (D31), and met with her legislative aide, Abby Neptun.
We all learned a great deal and are already looking forward to our next visit to Springfield!
Pictured L-R: Hector Renta, State Senator Adrienne Johnson, April McClees, Carole Rosen, State Senator Mary Edly-Allen, Kyontay Henry, John Porter, and Greg Walkington
Summary of theAdvocacy ofkey priorities to improve the lives ofI/DD in Illinoiswe presented at each of our legislative visits.
Each of them underscores the need for transformational systems change. Legislative Protections: SB 3559 (Anti-Retaliation Protections) Going Home Coalition strongly supports the reintroduction and passage of Senate Bill 3559. This legislation is crucial for safeguarding nursing home residents and staff against retaliation when reporting unsafe or unfair conditions. By fostering a culture of accountability, SB 3559 will help create safer environments and empower individuals to speak up without fear of retribution. Residents like Hector, John, and April—who have personally experienced or witnessed retaliation—are powerful advocates for the necessity of these protections. Housing and Support Needs In Illinois, more than 16,000 individualsremain on the PUNS list, waiting for housing and essential services. Over 13,000 individuals live in family homes due to a lack of affordable, accessible housing and limited provider capacity. Families are overwhelmed, and individuals miss opportunities to live independently in their communities.Positive developments, such as the permanent funding of the Housing Navigator Pilot Project and the Illinois Housing Development Authority’s (IHDA) increased support for housing projects, marksignificant progress. However, much work remains to ensure that individuals like April, John, and Hector can access the housing and support they need.
April, a former Shapiro resident, now lives in a group home and dreams of having her own apartment.
John, who transitioned from Howe, has found stability and autonomy in his group home.
Hector has been with the same provider for 16 years and actively helps others with disabilities find employment opportunities.
Community Living and Reducing Institutionalization Illinois continues to over-rely on large state-operated developmental centers (SODCs), which house approximately 1,600 individuals. These facilities are costly, inefficient, and often fail to meet residents' individualized needs. Despite efforts like the Choate Transformation, transitions to community settings are slow due to systemic barriers, including limited housing options and inadequate support services.
To address these issues, Illinois must:
Expand programs like the State Referral Network.
Invest in recruitment, training, and competitive wages for Direct Support Professionals.
Increase funding for service providers to build capacity and support transitions.
Nearly 200 SODC residents have expressed interest in community living. However, outdated guardianship processes and misinformation about options create significant obstacles.
Residents like April, John, and Hector highlight the success of community integration:
April earned her GED and secured multiple jobs within 18 months of leaving Shapiro.
John enjoys his autonomy, walks alone, and hopes to find employment.
Hector thrives as a community advocate and worker.
Creation and Implementation of a Community Supported Living Waiver Illinois is one of only six states without a dedicated Community Supported Living Waiver. Advocates propose a pilot program to address the unmet needs of individuals with high physical or behavioral support needs, co-occurring diagnoses, and complex health requirements. A five-year pilot waiver for 250 families statewide would expand funding and provide tailored support for this vulnerable population, including residents of Fox Developmental Center. With 71 residents—97% of whom are profoundly developmentally delayed—Fox remains one of the most segregated institutions in Illinois. A Community Supported Living Waiver would empower families and individuals, providing flexibility and control over their living arrangements while supporting Illinois’ shift toward community-based care. We look forward to working together to achieve these goals.
Interested in joining our upcoming December Going Home Coalition meeting?
Please like and follow Going HomeCoalition'sFacebookandInstagramPages!
REV UP stands for Register. Educate. Vote. Use Your Power!
REV UP’s mission is to build the power of the disability vote through increasing civic engagement in the disability community and improving the accessibility of elections.
REV UP Election Debrief Part 2: Community Care and Connection
Wednesday, December 11, 2024
3:00 - 4:30 pm
Alexia Kemerling,REV UP National Coalitions Coordinator, has invited all interested REV UP Illinois members to the final call of the year, hosted by BeyssaBuil, Access the Vote Florida member.ASL and CART will be provided.
On this call, we’ll focus on the radical acts of self-care and community care. Healing and positive change happen when we work on both ourselves and our communities.
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