Rosemary Collaboratory Project

Special Olympics Ireland is proud to engage with the Rosemary Collaboratory Project, which researches barriers to healthcare access faced by people with an intellectual disability. The project launched in 2024 gathers data from 11 contributing sites around the world, with the ultimate vision of achieving health system reforms that stand to improve the health outcomes of people with intellectual and developmental disabilities.

The Focusing on the Invisible report unveiled some startling findings:

  • Almost no Rosemary Collaboratory sites had specific indicators or policies outlined for people with intellectual and developmental disabilities (IDD);
  • In a survey of over 700 people with IDD from nearly 50 countries, 2 in 3 people do not make their own health decisions, or only
    do so occasionally;
  • Only 52% of people with IDD surveyed said they always understand their health care provider;
  • 66% of health worker survey respondents thought improving data collection on the health of people with IDD would be a very
    important measure to improve health services for this population.
Read the Full Rosemary Collaboratory Report

Focusing on the Invisible - the Ireland perspective

GOVERNANCE LEADERSHIP AND ENGAGEMENT

To build inclusive health systems, people with IDD must actively be involved in shaping the policies that affect their lives. Their voices matter, and their health needs must be clearly visible in every policymaking space that impacts their well-being.

Several Irish health policies recognise the needs of people with intellectual and developmental disabilities (IDD) and the government consults with disability organisations on health issues. 

 Key policies include:

  • National Sexual Health Strategy 2015–2020 
  • Smile agus Sláinte: National Oral Health Policy 
  • Sharing the Vision: A Mental Health Policy for Everyone 

 In 2023, disability services moved to the Department of Children, Disability and Equality. 

Area for improvement: There is no dedicated team in the Department of Health focused on improving healthcare access for people with IDD and no formal advisory group

PERSON -CENTERED CARE

Meeting the health needs of people with IDD requires a person-centered approach—one that empowers individuals to take charge of their health journey. People with IDD often face barriers to making decisions about their health, navigating care, and being understood by providers.

Ireland provides healthcare support schemes to help people with intellectual and developmental disabilities (IDD) access care. 

81% of people with an intellectual disability used one of these support schemes (2019 Census): 

  • Free Travel Scheme: 
    • Free public transport for people with disabilities,  free companion travel and door-to door in rural areas 
  • Assisted Decision-Making (Capacity) Act 2015: 
    • Supports people to make their own decisions where possible and  assistance through the Decision Support Service. 
  • Care coordination and advocacy: 
    • Patient advocacy services help people access and navigate healthcare. 
    • The National Advocacy Service for People with Disabilities provides free, independent support, including for healthcare.

HEALTHCARE WORKFORCE

People with IDD face stigma and unique communication barriers when accessing the health system and interacting with health workers. Comprehensive, evidence-based training can help bridge the gap between people with IDD and providers.

Training healthcare professionals can improve the quality of care for people with IDD. 

Some Irish universities provide training on caring for people with IDD, but the content varies between universities. 

All nursing programmes include some education on intellectual disability. 

Only 1 of 5 Irish medical schools includes a core module on disability in healthcare.

DATA FOR MONITORING AND RESEARCH 

Effective data collection and analysis is essential in addressing the health disparities faced by people with IDD. Robust data helps identify where health systems fall short and holds decision-makers accountable.

Data can highlight gaps in healthcare and support improvements in services and supports policy changes and improved healthcare planning

Research helps hold healthcare systems and decision-makers accountable with better data.

In Ireland (2016–2017): 

  • People without disabilities had a mortality rate of 302 deaths per 100,000 people vs people with disabilities 1,232 deaths per 100,000 people.  
  •  This is four times higher for people with disabilities
Read the Ireland Two-Page Summary

Rosemary Collaboratory News