The European Union recognises that the foundation for a healthy society is healthy people. But it still lags behind in ensuring that its 15 million people with intellectual disabilities can have access to healthcare systems that are prepared in dealing with their situation, writes Meghan Hussey.
Meghan Hussey is a Global Health Specialist at Special Olympics.
The third EU Health Programme 2014-2020 has set before it a goal of building a health system that not only is more effective at preventing and treating disease, but is committed to access and equity for all EU citizens. Despite these admirable goals, disturbingly absent from these discussions is the recognition of persons with intellectual disabilities (ID) as a marginalised group, particularly when it comes to accessing healthcare.
The goal of Special Olympics, which is the world’s largest sports and health organisation for people with intellectual disabilities, is to provide access for the 15 million people with ID in the EU to the same quality health care and health care policy that the non-disabled population has access to and is impacted by but cannot do it alone.
Access to proper health care is a challenge I have experienced personally in my family life with my sister who has ID and autism. She cannot go to our local dentist because he feels, neither he nor his staff, is trained to work with her. In order to get her care we have had to seek out a specialist in ID dentistry outside of our area. Non-verbal as a child, like many people with ID she has trouble making herself understood to health professionals, who are often at a loss at how to communicate effectively with her.
My sister’s experiences are far from unique. It is commonly overlooked that people with ID receive substandard healthcare or often no health care at all. The World Health Organisation report on disability found that persons with disabilities were four times more likely than persons without disabilities to report being treated poorly by a health professional. They are also three times more likely to report being denied health care.
Studies show that individuals with ID have a wide range of chronic and acute health issues and conditions, often more frequent and severe symptoms than the general population. The UK Disability Rights Commission found that individuals with ID had a lower life expectancy overall, mostly due to preventable conditions such as cardiovascular disease.
Special Olympics Europe led a study regarding the health status of people with ID at a recent World Games. It found that 30% of athletes failed hearing tests; 33% needed new or different pairs of glasses, 35% had obvious signs of advanced tooth decay, 50% had one or more food conditions, and 53% were either overweight or obese.
Such statistics call for cooperative action between the EU and civil society organisations like Special Olympics Europe to change this situation. Special Olympics provides year-round sports training and competition for children and adults with ID. This is an opportunity not only to develop physical fitness, but also to build self-confidence and a positive self-image that are important for holistic wellbeing.
Beyond the core Special Olympics sports programmes, the Healthy Athletes programme is working to improve the free health examinations that are provided at Special Olympics events in member states. The programme covers seven areas of health: vision, hearing, dentistry, podiatry, physical therapy, healthy lifestyle, and sports medicine.
A systematic review found that health examinations were effective in detecting previously unmet health needs in people with ID, including possibly life-threatening conditions. It also found that these health checks had the potential to sensitize health professionals to the needs of persons with ID and identify gaps in services.
Special Olympics seeks to address these gaps through community-level programmes and partnerships that empower individuals with ID and their families. Community health programmes engage athletes and family members in monitored health activities and ongoing education so that they can prevent chronic health conditions and take charge of their health. Online health resources, which are adapted to the needs of individuals with ID and translated into the languages of Member States, are another way the Special Olympics is increasing access through technology.
The four overarching objectives of the EU Health Programme include promoting healthy lifestyles, addressing cross-border health threats, building more efficient health systems, and ensuring better and safer healthcare for all Union citizens.
These objectives will prove impossible to meet if the health needs of the 15 million EU citizens with ID, and the barriers to care they face, are still ignored. A concerted regional effort to be inclusive of people with ID in EU health campaigns, such as the upcoming 2015 European Week of Sport, is needed. Working together, we can bring about a more equitable and ultimately healthier Union.