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Promote health and reducing health inequalities for people with intellectual disability in Europe [SOEEFHealth] [671369] - Operating Grant
Project abstract

People with intellectual disabilities (ID) have a wide range of chronic and acute health issues and conditions. In many instances, more frequent and severe symptoms than the general population. They are twice as likely to have significant visual problems and at much younger age and are hardly ever engaged in vigorous physical activity and find it difficult to make themselves understood when speaking with health professionals. The health conditions are may be similar to the general population, the impacts can be greater on those with ID. People with ID experience higher mortality rates as a result of higher rates of cardiovascular diseases. The general objective of SOEEF is to provide year around training and competition as well as well being and health promotion initiatives for athletes across the EU 28.Furthermore the goal is to expand the network of trained coaches and health care professionals through training model, seminars and meetings. The ultimate goal is to engage more athlete, families, service providers and further stakeholders into Special Olympics programs to guaranty the growth of sport, well being and health opportunities throughout the EUan as well as have positive impact on health and well being of people with ID in general.The Special Olympics Health Program "Healthy Athletes" offers free of charge Health screenings and intervention for children and adults with an intellectual disabilities (ID). People with ID are often excluded from quality health care and/or have difficulties to find qualified health care providers. HA provides also comprehensive training opportunities for health care providers, families that have members with an ID, medical students and other health care experts.

Summary of context, overal objectives, strategic, relevance and contribution of the action

Official WHO statistics show that people with intellectual disabilities have a poorer overall health status, have lower educational access, experience barriers in daily life, particularly in access to health care and health education [SEC(2006)410].
Key risk factors for poor health issues have been documented such as no specialized disability training for health professionals, a lack of physical activity, limited access to basic health care services, and an overall lack of understanding on Intellectual Disability by the medical/clinical community. In summary people with intellectual disabilities:
• have a wide range of chronic and acute health issues and conditions. In many instances, more frequent and severe symptoms than the general population.
• are twice as likely to have significant visual problems and at much younger age.
• are hardly ever engaged in vigorous physical activity and find it difficult to make themselves understood when speaking with health professionals.
• health conditions are may be similar to the general population, the impacts can be greater on those with ID.
• Experience higher mortality rates as a result of higher rates of cardiovascular diseases.

The general goal of SOEEF s is to provide year around training and competition as well as well-being and health promotion initiatives for athletes across the EU 28. Furthermore the goal is to expand the network of trained coaches and health care professionals through training model, seminars and meetings. The ultimate goal is to engage more athlete, families, service providers and further stakeholders into Special Olympics programs to guaranty the growth of sport, well-being and health opportunities throughout the EUan as well as have positive impact on health and well-being of people with ID in general.

SO initiatives aim to improve the health and well-being of people with intellectual disabilities in Member States through health screening clinics for persons with ID, training of health care professionals and education of athletes, care givers and families to empower them to better manage the health of people with ID. The initiatives help to address inequality of health care for people with ID through hands-on training for health care professionals and students who volunteer at the health screening clinics. The initiatives also tackle common health issues such as obesity, hypertension, poor fitness, bad vision and hearing, untreated tooth decay and pain. Screening results are captured in a comprehensive data base that provide detailed information of the health status to the public and health care authorities and can contribute to EU databases. The goal of SO health initiatives is to improve access for the 15 million people with ID in EU to the same quality health care and health care policy that the non-disabled population has access to and is impacted by. Most importantly the initiative shall empower people with ID and their families to take care of their well being themselves. The target group of Special Olympics are children and adults (age from 2) with an intellectual disability. The target group is particularly vulnerable and is often neglected and excluded from mainstream life. In many countries people with ID are still stigmatized and institutionalized and experience unequal access to quality health care, sport opportunities and general participation in mainstream social activities. According to WHO 2-3% of the general population have an intellectual disability which represents ca. 20million people in Europe and 15 Million people in the European Union.

the overall goals are:

1) Improving the skills, knowledge and expertise of health care professionals in relation to the health needs of people with intellectual disabilities.
2) Empowering athletes, care givers and families to better manage better manage the health of people with ID.
3) to address inequality of health care for people with ID through hands-on training for health car

Methods and means

In order to achieve the goals a set of different objectives and initiatives/activities were implemented:


Objective 1:
Training of new sport directors to support the development of Special Olympics sport programming in different EUan countries.

Activities 1:
1.1 At least 2 training seminars in 2 different sports involving at least 20 participants from 10 EUan countries to become SO sport directors in their respective countries:

• European Badminton Seminar; Copenhagen, Denmark: 10-12 April 2015
• European Sailing Seminar; Bregenz, Austria: June

Objective 2:
Improve health status of people with ID through year around health and well being programs across at least 12 EUan countries through at least 50 HA screening events performing at least 7000 screenings provided by at least 1000 health care professionals and students at no costs for the athletes. Furthermore to engage families and stakeholders from the field in seminars on health issues of people with ID and how to address them from a family perspective organizing at least 3 Family Health Forums as well as training of at least 5 new Clinical Directors to implement new Healthy Athletes initiatives in new EUan countries.

Activities 2:
2.1 Organize at least 50 screening events (1 screening event = one discipline event e.g. Health Promotion. Programs can provide 3 disciplines at once so that would be counted as 3 screening events) of 6 medical disciplines (Eye care, audiology, dentistry, physiotherapy, podiatry and health promotion) in at least 12 EUan countries to provide i.) comprehensive health screenings and interventions, ii.) education to athletes on healthy life style and iii.) provide referrals for follow up care.

2.2 Organize at least 5 Family Health Forums to provide critical health information for families (at least 20 family members per forum) that have a family member with an ID.

2.3. Organize at least 3 training seminars/meetings involving at least 20 health care professionals to i) become a Clinical Director for HA in their specific medical area and ii) to meet with other Clinical Directors/health care experts across the EUan countries to exchange and discuss the results and next steps of the Healthy Athletes program in relation to policy change and improvement of health of people with ID in the region.

2.4. Implement one community based health program with focus on Health Promotion involving a group of at least 50 athletes to provide education and intervention on healthy life style including impact on found health issues such as overweight, low bone density, healthy nutrition.

2.5. Development of comprehensive education material inclusive translation for athletes considering easy language, relevant health information for doctors about the athlete (hospital passport)to guarantee quality treatment especially in emergency cases.

Objective 3:
High quality research and presentation on the impact of Special Olympics programming on the lives of those who are involved and broadly on the wider society.

Activities 3:
3.1. Develop research focus areas for 2015 (and beyond) through consultation with stakeholders in SOEE. New strategic plan for SOEE research activities in place for 2016 and beyond aligning with global strategic plan. Coordinated research activities in the region and globally. Attend at least one meeting/conference.

Objective 4:
Organizing training at national programme level in EU countries in how to implement and develop a comprehensive family outreach programme engaging family members from community, regional and national level. This would be done by training family members SO also intends to focus on training countries in how to implement and develop the Special Olympics Young Athletes Programme (play based programme for children aged 2-7 which promotes cognitive, motor and social development in a way which benefits the young athletes and introduces them and their families to a healthy lifestyle early in their development

Work performed during the reporting period

In relation to Objectiv 1 following activities have been implemented in 2015:

Special Olympics European Badminton Seminar - Copenhagen, Denmark: 10-12 April:

The Badminton World Federation has collaborated with Special Olympics for the first time, supporting Special Olympics Europe and Eurasia’s (SOEE) recent seminar for badminton coaches. Sixteen coaches from across the continent attended the 10-13 April programme in Broendby, Denmark, at which they received coach-education materials and Shuttle Time resources from BWF’s Development Department. Coaches from Austria, Belgium, Britain, Denmark, Germany, Hungary, Ireland, Isle of Man, Latvia, Netherlands and Russia participated in the seminar which followed the signing of a partnership protocol between SOEE and Badminton Europe in February this year.

European Sailing Competition and Seminar Bregenz, Austria: 12-15 June:

First Regional Sailing Seminar took place in Bregenz, Vorarlberg, Austria on June 12-14, 2015 ahead of the World Summer Games in LA in July. 16 coaches and Unified Sailing partners from Austria, Switzerland, Belgium, Poland, Netherlands and Slovenia took part in this Seminar (as well as 8 athletes and 6 partners) connected with small Sailing regatta at the Bregenz Yacht Club at the Bodensee Lake (Constance Lake).

In relation to Objective 2 following activities have been implemented in 2015:

In 2015 Special Olympics partner programs of SOEEF conducted in total 88 screening events in 12 EUan countries performing over 10,500 screenings and health education to people with an intellectual disability (ID). Over 320 clinical professionals and over 640 medical students have been involved in the events.

A Special Olympics Healthy Athletes Passport has been developed to capture Healthy Athletes data in one place to be taken home by the athletes and to facilitate follow up care through parents, care givers and coaches. The materials have been translated into different languages and will be further developed over the period of the next two years. The goal is to provide an easy to understand document to the athlete providing information about the health status (such as blood pressure, weight, fitness level, vision and hearing status, bone density etc.) and recommended interventions on how to improve the individual health indicators through e.g. regular fitness activities, diets, brushing and flossing instructions etc.


In relation to Objective 3

Our partner program in Austria with support of the University of applied science in Graz hosted a Healthy Athletes conference "Health status of people with ID - Healthy Athletes® – The Special Olympics Health Initiative, Experiences and results for the improvement of health care and prevention for people with intellectual disabilities". The goal of the conference was to highlight the health status of people with intellectual disabilities (ID) on the basis of health data gained at Special Olympics Healthy Athletes events and to discuss the challenges and needs for adapted medical and preventive care for people with ID. Speakers from across Europe presented research results and discussed the needs for quality health care for people with ID. the conference was also the launch of the Healthy Athletes Program in Austria that led to their first screening event in January 2016.

In relation to Objective 4:

In 2015 Special Olympics partner programs (Cyprus, Slovenia, Hungary, Netherland and Estonia) of SOEE organized a series of Family Network events with focus on health. In total 482 family members that have children or relatives with ID have been involved and received information about Special Olympics programming and opportunities to improve the health of their children or relatives with ID.



The main output achieved so far and their potential impact and use by target group (including benefits)



The Special Olympics Healthy Athletes program offers free health events in conjunction with its sports competitions, brings health services, education, and care to athletes; trains healthcare professionals in working with patients with intellectual disabilities (ID); and uses the convening power of these events to educate and to activate influential individuals and institutions to support the global effort in addressing the health disparities faced by people with intellectual disabilities.

In 2015 Special Olympics partner programs of SOEE conducted in total 88 screening events in 12 EUan countries performing over 10,500 screenings and health education to people with an intellectual disability (ID) participating in Special Olympics. Over 320 clinical professionals and over 640 medical students have been involved in the events and have received therefore comprehensive hands on training on how to screen, treat and educate people with intellectual disabilities on health behavior and healthy life style. The program also collects data on the health status of people with ID.

One of the main health issues among people with ID is the high percentage of overweight (16%) an obese (12,7%) in the younger generation (under age of 18) and even more concerning in the adult population of Special Olympics athletes with 30.2% overweight and 29.8% obese athletes. There are also other concerning health issues among people with ID that have been identified through Special Olympics Health screenings in Europe such as low bone density (high risk of fracture) with almost 25% in the adult population, oral health (gingival signs 47,2%), hearing (blocked or partially blocked ear canal through e.g. cerumen 43,2%), need for corrective eye wear (40.5%) and gait abnormalities (58.8%).

Special Olympics tries to tackle that with different initiatives improving the health of people with ID such as training and education for parents (through family health forums), healthcare professional training while volunteering at screening events, health conferences in order to raise awareness (Healthy Athletes conference in Graz, Austria 2015) and by improving follow up care by utilizing education and information materials such as the Healthy Athletes passport.

Partner program Special Olympics Czech Republic has ran a fitness oriented community base program to improve fitness and performance of selected athletes of different age groups. The program included:

Coaches and volunteer education:
o Provided several opportunities for coaches education—at tournaments/competitions or as “open” sport experience which are
fitness experiences for athletes as well as education for coaches
• 2 Large scale pre/post-test FUNfitness assessments were conducted to better understand the needs of athletes
o Specific recommendations were given to each athletes at the completion of each assessment for how to improve their fitness
o Data was analyzed by Universities (Oloumouc and Brno) to better understand athlete fitness in various stratification


The Healthy Athletes conference in Graz brought together health care professionals, local health workers, health service providers, students and acting SOEE Special Olympics Clinical Directors to present and exchange findings about the health status of people with ID as well as discussion about the needs for improved policy in national health care systems for adapted health care for people with special needs.



Achieved outcomes compared to the expected outcomes

As a result of the partnership with Special Olympics Austria and the conference held in Graz in cooperation with the University of applied science FH Joanneum the University will set their curriculum focus towards "inclusion for people with cognitive, emotional and physical handicaps" in cooperation with Special Olympics Austria (https://www.fh-joanneum.at/aw/home/Studienangebot_Uebersicht/department_gesundheitsstudien/pth/News_Events/pth_events/~dbsd/Projekt2016/?lan=de).

The community based fitness program in Special Olympics Czech Republic has proven that through specific training and fitness programs people with ID (no matter what age) can improve their fitness and sports performance and therefore their social, mental and general well being. Case stories were collected showing the impact of regular fitness programming on improving sport performance and general well being of these athletes

The Family Health Forums became an important tool to raise awareness of health issues of people with ID. Parents are often told they should have no expectations with their children with ID. The Family networks and forums help networking of families and to create a support culture. They are also a great opportunity to educate parents on how they can help to improve the health of their children and look out for health issues that are often translated as being part of the disability (pain, bad hearing and vision etc.) but are in fact treatable secondary health problems. It is also an opportunity to engage local authorities and governments to provide vital information on local services available for families with members with ID. We'll expand opportunities for family network sessions, workshops and forums.

In 2015 Special Olympics partner programs of SOEE conducted in total 88 screening events in 12 EUan countries performing over 10,500 screenings and health education to people with an intellectual disability (ID) participating in Special Olympics. Over 320 clinical professionals and over 640 medical students have been involved in the events and have received therefore comprehensive hands on training on how to screen, treat and educate people with intellectual disabilities on health behavior and healthy life style.

More over we trained 7 new Clinical Directors from Austria, Croatia and Bulgaria to implement Healthy Athletes screening events in these countries. Focus country was Austria as host of the 2017 Special Olympics World Winter Games. Establishing a network of health care professionals and regular Healthy Athletes screenings in Austria are on of the legacy goals of the world Winter Games 2017.

Dissemination and evaluation activities carried out so far and their major results

Target group Special Olympics Athletes: the dissemination tools are in first place SO health related activities like training, competition and screening events as a driver for visibility of our activities to the public. Furthermore SOEEF provides information and educational leaflets, brochures or scorecards (in local language) that demonstrate how to manage the athlete’s health on their own based on the recommendation they received from the health care professionals at Healthy Athletes events (e.g. Healthy Athletes passport).

Target group health care professionals and medical Universities: in 2105 SOEEF organised the conference on health status of people with ID in cooperation with the University of applied science FH Joanneum. The goal of the conference was to highlight the health status of people with ID on the basis of health data gained at Special Olympics Healthy Athletes events and to discuss the challenges and needs for adapted medical and preventive care for people with ID. Topics of following medical areas have been discussed: Audiology, Optometry and Ophthalmology, Dentistry, Podiatry, Physiotherapy and Health Promotion. Furthermore a discussion on the actual situation and challenges of people with ID within health care systems was initiated with the result that people with ID face and their families face challenges in relation to access to quality health care no matter what health care system they are served by.

In order to improve the dissemination within the project and to have more reach SOEEF will create a designated website consolidating relevant dissemination and communication tools for the different target groups.