Public Accountability Report

The Illinois Council on Developmental Disabilities (ICDD) makes investments with local and statewide agencies, organizations, and individuals to attain the performance targets in the Five-Year State Plan so people with developmental disabilities (DD) and their families can achieve independence, productivity, community integration, and inclusion in all facets of community life. The ICDD promotes initiatives to coordinate services and supports and provide assistance for individuals with DD and their families. This is done through 20+ grant investments as well as staff activities.

The Illinois Self-Advocacy Alliance is a statewide advocacy organization in which self-advocates collaborate to support the mission and vision of the organization and each other. They prioritize training and empowering individuals with DD to become self-advocates and assume leadership roles. The Alliance is a strong network of self-advocates who actively engage in local initiatives to enhance their own lives and the lives of others and improve local service systems. In 2024, the Alliance focused on training and empowering individuals with DD to become self-advocates. The Alliance is training individual self-advocates and is organizing member groups to engage in local action to improve their lives and the lives of others, and to change local service systems. The Alliance worked on building capacity across the State of Illinois through the recruitment and development of membership groups. Typically, membership groups are housed within existing organizations and include self-advocates and allies. Membership groups engage in advocacy activities and report back to the Alliance on a monthly basis. The Alliance ended the year with 13 membership groups. The Alliance also published a rapid-response advocacy tool, which allows individuals and groups to request an advocacy service or support from the Alliance. A total of 376 people who identified as self-advocates participated in Alliance activities during the year. Through Alliance activities, 193 people were trained or educated. Of those surveyed, 86% reported that they were pleased with Alliance activities, and 100% reported increased advocacy skills. Seventy-one percent of people reported participating in advocacy activities. One person reported being a member of a board, coalition, or governing body. Twenty family members participated in Alliance activities in 2024. All family members who returned a survey reported increasing their advocacy skills.

In 2024, more than 700 people registered to attend the Speak Up Speak Out Summit in October 2023. Registrations of in-person attendees numbered 282, and 420 people registered to attend virtually. Of all registrants, 545 identified as self-advocates, and 52 registrants attended Speak Up Speak Out for the first time. The session with the highest attendance was “Discussing Politics with Civility,” with 51 attendees. Evaluation surveys were sent to 18 family members and 597 individuals who participated in the webinar series and the summit. Of the 42 total surveys returned, 31 were from individuals, and 11 were from family members. Here is some data from the surveys:

• Reported that they were pleased with Speak Up Speak Out activities: 38 respondents (27 self-advocates and 11 family members)
• Reported that Speak Up Speak Out activities increased their advocacy: 39 respondents (28 self-advocates and 11 family members)
• Reported that they participated in advocacy opportunities: 38 respondents (27 self-advocates and 11 family members)
• Reported being a member of a coalition, board, or governing body: 18 respondents (16 self-advocates and two family members)

During a legislative advocacy session, eight weekly sessions were hosted between February and April 2024. The session with the highest attendance was “Discussing Politics with Civility,” with 51 attendees.

The Council-funded Partners in Policymaking project is a leadership training program for individuals with DD and family members of people with DD. The training equips people with tools, resources, information, and training to prepare graduates to participate in activities that will impact systemic change, pursue leadership positions in the community, and advocate on policy issues that will increase opportunities and inclusion for people with DD. Two different classes of Partners in Policymaking graduated in fiscal year 2024. Class Four of Partners in Policymaking graduated in October 2023, early in fiscal year 2024. Twenty-two people successfully completed that class. The graduates included seven self-advocates, two siblings, and 13 parents. Most of the sessions for Class Four were in fiscal year 2023. Class Five of Partners in Policymaking launched in December 2023. Class Five participants graduated in June 2024. There were a total of eight weekend sessions of Class Five of Partners in Policymaking. Five of those sessions were in person, including one session in Springfield at the Illinois State Capitol. The session in Springfield included a tour of the Capitol Building and mock legislative meetings. Three sessions were held virtually. Twenty applicants were accepted into Class Five of Partners in Policymaking. Fifteen people graduated. Two dropped out early in class. Three more dropped out later in the session. The group of graduates included seven parents, four people with DD, three siblings, and one professional. This was the first time that Illinois Partners in Policymaking accepted a professional into the program. This was the second class that included siblings. The class included eight people who identify as people of color, and one person whose primary language is Spanish. The Spanish-speaking class member participated through real-time Spanish interpretation. Students represented seven counties across the State of Illinois.

To advance customized employment (CE) in Illinois, Marc Gold & Associates (MG&A), a leader in CE best practices, received funding from the ICDD to evaluate the effectiveness of the Customized Employment for Individuals with Disabilities Act (820 ILCS 97). MG&A assessed both the legislative framework and the Department of Human Services’ Division of Rehabilitation Services’ (DHS-DRS) CE Pilot Program. Their findings highlighted the need for amendments to establish consistent, best practice protocols for DHS-DRS CE services. In response, the ICDD partnered with the Illinois Assistive Technology Program to provide education and guidance for necessary legislative changes. These efforts led to amendments aligning the Act with MG&A’s best practice recommendations, culminating in the updated law being signed in July 2024. The ICDD continues to assess the Act's implementation and supports DHS-DRS through Council-funded technical assistance from MG&A to ensure effective adoption of the updated protocols.

In 2024, Illinois took a major step forward in promoting equity and inclusion with the passage of the Dignity in Pay Act (House Bill 793), which sets a clear goal of phasing out subminimum wages for workers with disabilities by 2029. Central to this achievement was the ICDD, whose leadership and expertise played a pivotal role in shaping and advancing the legislation. The ICDD educated its network and state legislators, offering thorough and effective expert guidance. The ICDD’s insights helped craft a legislative framework that reflects the needs of both individuals with disabilities and the organizations that employ them. Additionally, the ICDD proposed key amendments to the bill (i.e., House Amendment 3), which were adopted in the final engrossed version of the bill. Written into the legislation is the ICDD’s role to lead the transformation process in collaboration with the Employment and Economic Opportunities for Persons with Disabilities (EEOPD) Taskforce. This underscores the Council’s commitment to ensuring the successful execution of the Act’s goals. The Act itself brings several transformative changes. By December 31, 2029, all workers with disabilities in Illinois must be paid at least the state minimum wage, ending the use of 14(c) certificates that allowed subminimum wages. To support this transition, the Act establishes a $2 million Transition Grants Program to assist organizations in moving toward competitive, integrated employment models. Furthermore, the Act increases the personal needs allowance for residents in community-integrated living arrangements (CILAs) from $60 to $100 per month, starting January 1, 2025, providing individuals with greater financial independence. The ICDD's proactive leadership and collaboration have been vital in bringing the Dignity in Pay Act to life. By promoting fair wages and fostering inclusive employment opportunities, this Act represents a significant step toward a future in which all individuals with disabilities in Illinois can thrive.

The Supportive Housing Pilot Project stands as a pivotal initiative, strategically crafted to bolster a substantial supportive housing investment by the ICDD. This investment uniquely combines resources from the Department of Human Services’ Division of Developmental Disabilities (DHS-DDD) and ICDD funds. The project involves the delivery of technical assistance (TA) and meticulous oversight to seven independent service coordination (ISC) agencies. This comprehensive approach encompasses program development, coaching, multi-site coordination, cross-system collaboration, and access to pertinent training opportunities. The TA structure has seamlessly evolved in tandem with the overarching statewide initiative, demonstrating adaptability to the distinct needs of the ICDD, the DHS-DDD, and the project grantees. A key aspect of this evolution involves the centralization of housing expertise through housing navigators, resulting in a notable increase in the number of individuals with DD on the Statewide Referral Network (SRN) for housing. As of August 2024, there have been 82 people with DD successfully housed, and a further 305 individuals referred to the SRN. This collective progress underscores the project's efficacy in facilitating meaningful outcomes and fostering improved access to supportive housing for individuals with DD.