Building Health Advocacy Skills among Families and Persons with Developmental Disabilities

Beth Marks, RN, PhD
Jasmina Sisirak, PhD, MPH
Tamar Heller, PhD
Ann Cutler, MD

Project Staff

Beth Marks, RN, PhD
Jasmina Sisirak, PhD, MPH
Yen-Ching Chang, MS


Healthcare providers have a key role in motivating the development of the skills and confidence necessary for people with developmental disabilities (DD) to address the social, economic, and environmental determinants of health and improve their health. However, they often receive less than three hours of education regarding health care issues and needs of people with disabilities during their professional training. The purpose of this training for health professionals is to foster partnerships between healthcare providers and people with DD through targeted training efforts. By building an infrastructure among healthcare providers, adolescents with DD and their caregivers will be encouraged to become partners with their healthcare providers to receive equitable, accessible, acceptable, and culturally relevant care that protects and promotes their health as they transition into adulthood. 

This is a capacity building project for Post Graduate physicians in Illinois Pediatric Residency Training Programs aimed at systematically improving access to quality health care for individuals with DD. The Health Advocacy Curriculum was developed for the two hour Health Advocacy Workshop to improve access to quality health care for adolescents and young adults with developmental disabilities/special health care needs (DD) through improved attitudes, communication, health literacy, and health advocacy among Pediatric Residents. Each module has corresponding self-study articles and resources. Community and national resources for adolescents and young adults with DD are provided. It includes the following four modules:

1) Health Care Interactions: Charity to Advocacy;
2) Health Promotion: Beyond Illness Care;
3) Universal Design: More Than Ramps; and
4) Health Advocacy: Culturally Relevant Care.

The training also includes a Health Advocacy Toolkit (includes materials supporting communication for Residents to use and disseminate to their patients and parents/caregivers) and Community-Based Site Visits for Pediatric Residents. The purpose of the community-based host site visit is to expose Pediatric Residents to: 1) observe good models of communication with pediatric patients with DD and their families; 2) learn ways to promote physical activity and healthy food choices and other preventive measures to decrease co-morbidities; 3) promote building self advocacy skills with patients and improve health literacy; and 4) increase awareness of available resources in the community to meet the needs of adolescents/young adults with DD. This training is being developed and disseminated with the support of the University of Illinois at Chicago College of Nursing WHO Collaborating Center and incorporates principles of primary health care.

Project Funding

This project is funded by the Illinois Council on Developmental Disabilities. For more information, please contact:

Target Population

Pediatric Residents

Priority Areas

  • Building coalition of health care professionals interested in promoting the rights of persons with disabilities.
  • Distance learning via blackboard, webinars, surveys, conferences


Barriers and Supports