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Intellectual and Developmental Disability Services in Illinois

Issues, Options and Opportunities

INSTITUTE PRIORITIES

The Institute on Public Policy for People with Disabilities has been a trusted and leading voice in Illinois for ...

IL IDD 2020 OVERVIEW

The Institute on Public Policy for People with Disabilities serves as are source for legislators, state officials...

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Below are some widely discussed characteristics of the Illinois service system for people with intellectual and developmental disabilities (I/DD):

  • Illinois ranks 47th nationally in both fiscal investment in community services as well as investment in services that promote community inclusion
  • Illinois ranks 3rd nationally in census for large, public state institutional settings; 14 states, including neighboring Michigan and Indiana have no public institutions and 13 additional states have fewer than 200 people residing in such settings
  • Illinois ranks 1st nationally in people living in group home settings of 6+
  • Illinois has been found out of compliance with the Ligas Consent Decree for nearly 3years
  • Nearly19,000 people are registered with the state as awaiting community services 

The Institute on Public Policy for People with Disabilities serves as a resource for legislators, state officials and stakeholders seeking to enhance, expand and evolve the Illinois community system for people with intellectual and developmental disabilities.  Below we highlight several pivotal topics in the Illinois I/DD service system that warrant attention and action. Accompanying this brief overview are more detailed analyses of key topics. 

Ligas Consent Decree Compliance

The state has begun the process of reviewing the CILA and ICFDD rate methodologies as ordered in federal court.  Institute staff and board members have played a strong role in the early stages of this effort which includes the plaintiffs, interveners and Court Monitor as members of the Oversight Committee.  The seamless continuation of this work is strongly encouraged as the administration transitions in 2019.  We likewise recommend the General Assembly convene a hearing to discuss the overall status of the Consent Decree and establish specific benchmarks for action. 

Rebalancing the I/DD System

People with I/DD and accompanying significant behavioral/mental/physical health conditions struggle to find adequate community resources to meet their complex support needs. Illinois must invest in the community system so that people with complex support needs can remain in their homes or other community-based settings while receiving intensive services and supports. Investing in enhanced community services for people with qualifying conditions will deflect them from psychiatric and inpatient hospital settings, as well as long-term placement in state institutions.  Illinois has the opportunity to adopt models that have proven effective in other states, 14 of which have no institutional settings, for serving people with complex support needs in community settings.

 Stabilize the Direct Support Workforce

People with intellectual and developmental disabilities depend upon a direct support workforce to provide support, supervision and structure to their daily lives.  The stability of this workforce has eroded during the past decade due to stagnant reimbursement rates paid by the state to community agencies, which must compete with other industries that are able to pay competitive wages.  When the community system began, state reimbursement for average DSP wages was 92%higher than minimum wage; this differential was an intentional acknowledgement of the critical nature of DSP work and the need to attract and retain a committed and competent workforce. During the past 2 decades that differential has eroded to the point where state reimbursement for average DSP wages is now equal to minimum wage in the city of Chicago and has lost more than ½ the premium it once held statewide.  

 Illinois pays community agencies $11.96/hour for the average (not minimum) direct support worker in community settings, compared with an average starting wage of$18.96/hour for the same position in state institutions. Community agencies across the state are reporting the inability to compete with other employers who pay well above minimum wage due to low reimbursement levels from the state.  Illinois must demonstrate its commitment to people with intellectual and developmental disabilities by investing adequate resources to assure a stable and competent workforce to deliver services and supports in community settings.   

Expansion of Service Options

Illinois lags far behind other states in expanding service options beyond traditional congregate settings.  While the outgoing administration decried concentrating resources “in the deep end of the pool”, the I/DD system does precisely that with the 3rd highest institutional census and 88% of people receiving community residential supports residing in 24/7 settings, partly due to a lack of adequately funded alternatives.  The incoming administration should amend the adult DD HCBS waiver to expand service models and definitions so that people have greater flexibility in accessing needed services in community settings.

 Supporting People to Obtain Employment

Nationally, Illinois has the 2nd lowest workforce participation among people with I/DD receiving HCBS services.  In 2016, Illinois convened a public/private sector task force to examine program and funding models that would increase employment opportunities for people with I/DD.  Unfortunately, the work of this group and there commendations it made went largely unheeded. Resurrecting the work of this group and evaluating where its recommendations intersect with current policy initiatives and priorities is an efficient and effective strategy for achieving the aim of increasing employment opportunities and outcomes for people with intellectual and developmental disabilities.

 Emerging Models

The Institute is leading the Illinois team that was one of 3 states selected to participate in Business Development Learning Collaborative (BDLC), funded by the Administration on Community Living.  Our team includes several state partners, community organizations and the University of Illinois.  The focus of the collaborative is to prepare for emerging service, business and funding models in I/DD services.   In Illinois and nationally, I/DD services remain one of the last fee-for-service payment models in Medicaid and Medicaid HCBS services.  As other services for other populations move toward capitated, value-based and other payment models, we must assure that any changes to the I/DD funding structure address the unique lifelong nature and philosophy that is the foundation of community services for people with intellectual and developmental disabilities.  The Institute has served as a resource in this area for current legislative leaders, national audiences and stakeholders across Illinois, and will continue to inform and educate policy makers in this area.

The Institute looks forward to continuing to serve as a resource and partner in advancing services for people with intellectual and developmental disabilities in Illinois.

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