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By Kamaria Kali, Search Inc. Administrative and Development Assistant
The History of the Disabilities Landscape in Illinois
As we begin another year, it’s important to take a moment to reflect on the significant strides made in recognizing and upholding the rights of individuals with intellectual and developmental disabilities (IDD) in Illinois. We want to celebrate the groundbreaking progress and remember the inhumane treatment of people with IDD not so long ago. Much progress has been made, but there is still so much more to do.
The journey from marginalization to inclusion has been marked by non-stop advocacy, legislative milestones and a growing societal acknowledgment of the inherent worth and potential of every person.
From Segregation to Inclusion
In the early 20th century, people with IDD were often housed in institutions, deprived of opportunities for education, employment and community integration. Families seeking support formed grassroots movements, challenging prevailing misconceptions and advocating for their loved ones’ rights. In Illinois, these efforts combined into organized advocacy with the establishment of The Arc of Illinois (The Arc) in 1950. The Arc was founded by local parent groups dedicated to promoting the rights and well-being of individuals with IDD.
Search Inc., the parent organization of JJ’s List, started alongside this movement towards inclusion as a small parent group in the Cabrini Green neighborhood of Chicago in 1968. These parents were frustrated with the lack of inclusion in the public school system and came together to support each other in advocating for their children. Today, Search provides support to over 350 adults in Chicago and the northern suburbs annually.
While institutionalization overall has decreased in Illinois, Illinois still has one of the highest rates of institutionalization in the country. Organizations like Search continue to advocate for further expansion of community-based services and supports for all people with IDD.
Legislative Victories in Illinois
Over the decades, Illinois has enacted several laws to enhance the lives of individuals with IDD:
-Illinois Council on Developmental Disabilities (ICDD): Established in 1974 under a federal mandate, the ICDD works to promote the independence, productivity, integration, and inclusion of individuals with developmental disabilities into the community.
-Illinois Human Rights Act: Introduced in 1979, this act consolidated existing laws addressing civil rights, including protections against discrimination based on disability.
-Home and Community-Based Services (HCBS) Waivers: Illinois offers HCBS waivers to support individuals with developmental disabilities, enabling them to receive services in community settings rather than institutions.
-Recent Legislation: In 2023, Illinois introduced SB1600/HB3398, aiming to address the workforce crisis in community care by funding a $4 hourly wage increase for Direct Support Professionals (DSPs), thereby enhancing the quality of services for individuals with developmental disabilities. Thanks to ongoing advocacy efforts, DSPs were able to secure a $2.50 hourly wage increase.
Changing Perceptions
Beyond legislative achievements, there has been a notable shift in societal perceptions of those with IDD. The focus has moved from viewing disability through a lens of limitation to recognizing and celebrating individual strengths and contributions. Educational institutions, workplaces, and communities are increasingly embracing inclusivity, ensuring that individuals with IDD have access to the same opportunities as their peers.
Advocates and individuals with IDD have been at the forefront of this transformation. People with IDD are not defined by their disabilities, but by their abilities and individual contributions to society. This sentiment echoes the core belief that every individual deserves respect, dignity, and the opportunity to thrive.
Looking Ahead
While significant progress has been made, the journey toward full inclusion and equity continues. Ongoing advocacy, education and policy development are essential to address remaining challenges and to build on the foundation laid by previous generations.
As we reflect on the advancements in the IDD space in Illinois, we honor the resilience and determination of people with IDD, their families and advocates. Cory Gumm, CEO of Search Inc. shared, “Although progress has been made over the last few years, the State of Illinois continues to face systemic challenges in community-based services for people with IDD, including funding shortages and a lack of service capacity for people in crisis. We hope to see continued growth in these areas among others. Your support in talking to legislators, signing witness slips and having open conversations with friends and family is critical for us to ensure people with IDD have they support they need to thrive.”
Some resources to stay involved with ongoing policies in the IDD space include the Illinois Association of Rehabilitation Facilities, They Deserve More and The Arc of Illinois.
Article sources:
https://www.thearcofil.org/the-arc-of-illinois-mission-and-history/
https://icdd.illinois.gov/about.html
https://dhr.illinois.gov/about-us/directors-office/agency-overview-and-history.html
https://hfs.illinois.gov/medicalclients/hcbs/dd.html
https://icdd.illinois.gov/about/legal-authorization.html
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