Developing DeafBlind Core Sets for an International Classification of Functioning, Disability, and Health (ICF) Model
Dr. Walter Wittich, Shirley Dumassais, Dr. Tara Brown-Ogilvie, Dr. Megan Conway
Université de Montréal,Canada & Helen Keller National Center, USA
What is the “International Classification of Functioning, Disability, and Health” or ICF?
- An ICF model is an assessment framework developed by the World Health Organization (WHO) to describe and measure health and disability while including additional factors:
- Body Functions and Structures – sensory, motor, and other body systems.
- Activities and Participation – execution of tasks and involvement with others.
- Environmental factors – physical and social surroundings.
- Personal characteristics – age, gender, culture, etc.
- ICF Core Sets focus on how individuals participate in life, not just medical symptoms.
How can an ICF model be used?
- Clinical practice: For assessment, treatment planning, and outcome evaluation.
- Rehabilitation: To guide rehabilitation interventions and improve outcomes.
- Research: To standardize data collection and analysis in health and disability research.
- Social policy: To inform policy decisions related to health, disability, and inclusion
Why is an ICF Model Important?
1. More Targeted Care: Core Sets guide healthcare providers to focus on the most relevant aspects of a person’s life affected by their condition. This means that the right questions are asked, resulting in better reports, so the right support is offered.
2. Better Communication: By using the Core Sets, healthcare teams have a shared, clear way to discuss a person’s needs and goals. This is useful for creating better reports, and a better treatment plan that considers all aspects of health, not just the diagnosis.
3. Improved Quality of Life: Core Sets help identify the biggest barriers someone might face in their everyday life and find solutions, whether those are physical, emotional, or environmental.
Why create an ICF Model for DeafBlindness?
- Individuals with deafblindness have varied hearing and vision are often misunderstood, and face challenges in accessing support and experience diverse impacts on daily life and social participation.
- Environmental barriers, like inaccessible or irrelevant assessments and limited adaptive equipment. A custom ICF model, specific to deafblindness, is key to improving inclusion and quality of life.
How Was The ICF Model Developed?
- Systematic literature review
- Survey input from subject experts
- Interviews/focus groups with individuals with DeafBlindness and their families
- Consensus conference with 26 representatives from around the world
- Data from 54 countries informed creation of a comprehensive and brief core set.
- A comprehensive core set lists ALL factors that can be assessed for a specific condition.
- A brief core set is a shorter version covering ONLY essential areas.
What Are The Next Steps?
- We completed the process of publishing the studies and submitted the Core Sets to the World Health Organization who approved and published them on their website.
- Next is to develop Core Sets specific to children and youth with dual sensory loss or DeafBlindness, as their needs differ from those of adults.
- We would like to pilot and test this new DeafBlind assessment tool, if you are interested in piloting, or would like more information, please contact Dr. Tara Brown-Ogilvie, tbrown-ogilvie@helenkeller.org.
Here are some online resources for more information:
- DeafBlind Core Set or use the QR code on the bottom right corner of this page.
- Who is DeafBlind: Publications and Resources
Contact: Dr. Tara Brown-Ogilvie, tbrown-ogilvie@helenkeller.org
