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Medical Advocacy: Understanding Rights and Interactions with People with Intellectual and Developmental Disabilities Funding Decision Overview

Congratulations to the three projects that will be funded under the medical advocacy initiative:

  1. The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD)
  2. Ray Graham Association 
  3. EP!C  
These projects meet the Council’s Systems Change goal under the following objective:
By September 30, 2021, individuals with intellectual and developmental disabilities, their families, and other stakeholders will have access to coordinated, streamlined information about services, supports, and other assistance.
Each project will receive funding over 2 years to implement targets A and/or B, as was identified in the CFI:
Target A:  Individuals with IDD and their family members will know their rights and have the information they need to get their medical care needs adequately and sensitively met.  
Target B:  Healthcare professionals and/or office staff have knowledge and ready access to information, so they effectively and sensitively communicate with patients with IDD and provide quality healthcare service and can quickly access information such as how to assure healthcare coverage and referrals, so the patient is able to follow treatment recommendations.  
Grantee:  The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD) Project Overview
Grantee: The University of Illinois at Chicago – Institute for Disability and Human Development (IDHD)
Project Name: Pre-Service training for Healthcare Professionals 
Project Deliverables:  
  • Collaborate with five university programs for medical students and enhancing their curricula with the following components: ensuring rights of people with intellectual and developmental disabilities (IDD) for treatment decision and continuum of care, disability etiquette, and knowledge on IDD support services
  • Host two annual coalition meetings in which collaborating university medical and health programs can network and exchange information on providing treatment for patients with IDD. Provide a means to expand to additional programs
  • Develop an online web portal at IDHD that collects and disseminates instructional materials related to pre-service training about people with IDD
Grantee: Ray Graham Association
Project Name: Better Communication & Better Healthcare Campaign
Project Deliverables:
  • Arm individuals with developmental and other types of intellectual disabilities and their caregivers/families with durable, portable and adaptable tools to better self-advocate for the healthcare via a Health Resume
  • Develop an app for the Health Resume and a pictorial version, which can be readily shared for wider use
  • Host webinars and a community health fair to educate healthcare providers on use of the Health Resume as an adjunct to electronic records to properly communicate with patients with developmental disabilities regarding their care
Grantee:  EP!C 
Project Name:  Medical Advocacy 
Project Deliverables:  
  • Educate people and healthcare providers in the 5 county Peoria area
  • Use the Health Risk Screening Tool and an accessible curriculum for assessment and instruction
  • Build on a partnership with UnityPoint Health Methodist to train area nursing schools, urgent care and specialty clinics, emergency room and hospital personnel on rights, respect and health of people with I/DD