I/DD Community System Overview and Priorities in Illinois

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They Deserve More Fact Sheet 2022
2021 Wrap Up/2022 Line Up
2021 Annual report
Institute Overview and Expertise

The Institute on Public Policy for People with Disabilities has been a trusted and leading voice in Illinois for over 2 decades in the intellectual and developmental disability (I/DD) policy arena.  As a private, non-profit organization focused exclusively on I/DD policy, we work collaboratively withstate, private sector and legislative partners on critical issues impacting people with I/DD and the services they rely upon.  The Institute extends our resources, expertise and support in working with public and private sector partners to address issues outlined below in a creative, collaborative and compassionate manner that maximizes the efficiency and effectiveness of public resources and improves and expands opportunities for people with I/DD to receive essential community supports.

In FY18, Illinois spent more than $1.5billion dollars to serve 30,800 children and adults with intellectual and developmental disabilities in home, community and institutional program settings,excluding school services.  Despite this figure, Illinois remains 47th lowest in the nation for fiscal investment in community services and there are more than 18,000 people registered on the Prioritization of Urgency of Need for Services (PUNS) list as waiting for community services.  Illinois Spends only 55% of the national average on community services and has the 3rd highest number of people with I/DD living in large, public institutions in the country.   Institute priorities include those briefly summarized below.

  1. Strategic Planning to Maximize Resources
    Illinois must examine the use of resources it invests in I/DD services and assure that limited public dollars are being used in the most effective and efficient manner consistent with evidence-based practice findings.   The lack of planful and deliberate approach to designing the I/DD service system to reflect 21st century practice, priorities and service models is both an obstacle and an opportunity for Illinois.
  2. Emerging Funding Models
    I/DD services in Illinois and nationwide are among the few remaining public-sector fee-for-service (FFS) reimbursement models.  The Institute is well informed regarding value-based and other funding models being used outside of Illinois And is uniquely poised to help shape the future direction of reimbursement and outcomes for community services.  
  3. Sustainability of Community Service System
    The Institute, in partnership with people with intellectual and developmental disabilities and their families,community agencies that support them and advocacy organizations, acknowledges the fragility of the Illinois community service delivery system and the need to develop new technologies, approaches and priorities for I/DD services.  Demographic, labor pool and economic trends all foretell the need for Illinois to adopt a strategic and evidence-based approach to planning for the future of the service delivery system.
  4. Quality and Accountability
    Assuring that the I/DD system remains focused on supporting people receiving services to live a meaningful and valued life in their community remains a constant priority and focus for the Institute's does partnering with state policymakers and leadership to work collaboratively toward this goal.

The Institute looks forward to partnering with all committed stakeholders and policymakers in addressing the challenges facing the Illinois I/DD service system and capitalizing on opportunities to enhance outcomes, efficiencies and improve the lives of Illinoisans with intellectual and developmental disabilities.



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