Why We Are Here

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Mission Statement: Our mission is to improve medical safety and healthcare equity for individuals with intellectual and developmental disabilities by preventing diagnostic overshadowing and ensuring medical concerns are appropriately evaluated before being attributed to behavioral or psychiatric causes.

Key Issue: People with intellectual and developmental disabilities frequently experience diagnostic overshadowing, a medical phenomenon where physical health concerns are misattributed to behavioral or psychiatric causes. Because many individuals with IDD cannot easily communicate pain or physical symptoms, behavior changes are often the first indicator of medical illness.

When medical concerns are dismissed as behavioral:

• Medical care and diagnosis are delayed
• serious health conditions may go untreated
• preventable health crises can      occur
• premature death can result

Policy Agenda:

1. Medical Screening Protocols: Require a standardized medical screening process when sudden behavioral changes occur in individuals receiving disability services. This could include:

• vital signs assessment
• pain screening
• medication review
• referral to medical provider when needed

2. Diagnostic Overshadowing Training: Require training for professionals serving individuals with IDD:

• physicians
• nurses
• direct support professionals
• behavioral clinicians
• care coordinators
• residential agency staff
• community day service staff

Training would focus on recognizing medical conditions that may present as behavioral symptoms:

• recognizing pain in nonverbal individuals
• common medical conditions presenting as behavioral symptoms
• when to escalate for medical evaluation

3. Medical–Behavioral Communication Requirements: Establish guidelines requiring collaboration between:

• medical providers
• behavioral providers
• residential staff
• case coordinators

Example: Significant behavioral changes must trigger medical consultation and documentation.

4. Mortality Review Process: Create a system for reviewing unexpected deaths of individuals receiving state disability services to identify potential systemic issues and prevent future tragedies. When individuals receiving state disability services die unexpectedly, an independent review panel should examine:

• whether medical concerns were reported
• whether diagnostic overshadowing occurred
• whether system changes are needed

This helps identify patterns and prevent future deaths.

Our Goal: To strengthen medical safety protections and ensure individuals with intellectual and developmental disabilities receive appropriate medical evaluation and care.

Mission Statement: To establish a standardized, competency-based training and certification system for Direct Support Professionals (DSPs) in Illinois that ensures safe, high-quality care for individuals with intellectual and developmental disabilities while strengthening workforce stability and accountability.

Key Issue: Illinois currently lacks a consistent, enforceable standard for DSP training and competency.

As a result:

• Training varies significantly across providers 
• Staff are often placed in high-risk situations without demonstrated competency 
• Medical and behavioral emergencies may be misidentified or mishandled 
• Workforce turnover remains high, further destabilizing care 

This creates preventable safety risks, poor outcomes, and system inconsistency across the state.

Policy Agenda:

1. Statewide DSP Certification System

• Establish a tiered certification model: 
  • Tier 1: Foundational support 
  • Tier 2: Behavioral/clinical support 
  • Tier 3: Medical/complex care

2. Competency-Based Requirements

• Require DSPs to demonstrate skills, not just complete training hours 
• Core competencies must include: 
  • medical emergency recognition 
  • diagnostic overshadowing awareness 
  • behavioral vs. medical differentiation 
  • trauma-informed care 

3. Mandatory Recertification

• Annual or biannual recertification tied to: 
  • updated safety protocols 
  • medical and behavioral best practices 

4. Statewide Training & Credential Registry

• Centralized system to track: 
  • certifications 
  • training completion
  • disciplinary or safety-related concerns 

5. Oversight & Accountability Measures

       Require:

• DHS/OIG review of incidents tied to training gaps 
• provider accountability for ensuring staff competency

6. Workforce Stabilization Alignment

     Align certification with: 

• wage incentives 
• career ladder pathways 

Improve retention while increasing quality of care

Our Goal: To create a professionalized, competent, and accountable DSP workforce that is equipped to safely support individuals with complex needs—resulting in reduced incidents, improved health outcomes, and increased system stability across Illinois.

Mission Statement: To establish a comprehensive, responsive continuum of care in Illinois that ensures individuals with intellectual and developmental disabilities have access to appropriate levels of support, including crisis stabilization and higher-acuity care when community-based services are insufficient.

Key Issue: Illinois’ current system often operates as “community placement or nothing.”

As a result:

• Individuals with complex needs are placed in settings that cannot safely support them 
• Providers are under-equipped to manage high-acuity medical and behavioral conditions 
• When placements fail, there are limited or unclear pathways for higher-level care 
• Individuals cycle through hospitals, crisis placements, or unsafe environments 

This leads to trauma, instability, increased risk, and preventable system failures.

Policy Agenda:

1. Establish a Tiered Continuum of Care: Create clearly defined levels of support:

• Standard community-based services 
• Enhanced support homes (higher staffing/clinical support) 
• Crisis stabilization units (IDD-specific) 
• Specialized medical/behavioral treatment settings

2. Structured “Step-Up” Placement Pathways: Develop formal processes for: 

• escalating care when needs increase 
• avoiding unnecessary hospitalization 
• Ensure timely access to higher-acuity services 

3. IDD-Specific Crisis Stabilization Units: Expand access to: 

• short-term, intensive support environments 

    Staff must be trained in: 

• IDD 
• behavioral health 
• medical complexity

4. SODC Readmission Review Process: Establish a multidisciplinary review panel to evaluate: 

• failed placements 
• medical necessity for higher-level care 

     Allow: 

• temporary or long-term placement adjustments when appropriate

5. Post-Placement Monitoring Requirements: Require structured follow-up (6–12 months) after placement transitions 

• Identify and intervene on: 
  • early signs of instability 
  • provider capacity concerns 

6. Data Collection & Transparency: Mandate statewide tracking of:

• placement failures 
• crisis utilization 
• outcomes after escalation of care

Our Goal: To ensure individuals with intellectual and developmental disabilities receive the right level of care at the right time, reducing system failures, preventing crises, and promoting long-term stability, safety, and dignity within Illinois’ service system.