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SPORT, WELL-BEING AND HEALTH INITIATIVES FOR PEOPLE WITH INTELLECTUAL DISABILITIES PARTICIPATING IN SPECIAL OLYMPICS [SOEEF2017] [748817] - Operating Grant
Project abstract

The Special Olympics EU Eurasia Foundation (SOEEF) is dedicated to providing critical services to children and adults with intellectual disabilities through ongoing training and competition, physical activities, inclusive sport, social inclusive initiatives and health services in all 28 Member States. The objectives are to offer quality training, competition, health screenings, and ongoing inclusive opportunities to athletes to maximize individual athlete potential, promote health and a healthy lifestyle both in sport and daily life, whilst reducing health inequalities and improving access to quality health services for people with intellectual disabilities.
In summary we can point out that 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. Special Olympics EU Eurasia and its partner national programs provides its service to almost half a million individuals with intellectual disabilities across the EU driven mainly by volunteers.
The Healthy Athletes (HA) program provides access to health care for SO Athletes not only to improve their ability to improve health and fitness levels or to train and compete in SO events, but also to identify health care needs and to improve quality of health care for people with intellectual disabilities. The integrated health and physical activity action plan improves public health and reduces health inequalities of people with intellectual disabilities.

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.
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. 20 million people in Europe and 15 Million people in the European Union.

Methods and means

The SO Europe Eurasia Foundation (SOEEF) is the independent entity of Special Olympics(1), the world largest public sport and health organization for children and adults with an intellectual disability (ID). SOEEF is operating in all 28 EU member states reaching over 450.000 people with ID. Special Olympics EU Eurasia Foundation supports public health activities operating from offices in Dublin, Brussels and Warsaw, and supports the presence of national Special Olympics offices in all 28 Member States, SO cooperate and assist local services, agencies and organisations dedicated to the promotion of physical fitness, health and well being of people with intellectual disabilities and develops activities and programmes across EU and across borders that enables Special Olympics athletes to take a fuller and more active role in their community and society in general.

SOEEF’s overarching goal is to improve the health and fitness of children and adults with an intellectual disability across Europe by providing free of charge health screenings and intervention events (Healthy Athletes initiative) at Special Olympics sport events, education and training programs for health care professionals and students and families of people with ID as well as community based health and fitness initiatives. Through the “Healthy Athletes” initiative SOEHF is also collecting comprehensive health information of people with ID in order to identify and address health issues of the population, raise awareness of health disparities and to improve policy for improved quality health care and prevention for people with ID in Europe. In the process the Heathy Athletes imitative became the world largest public health program dedicated to children and adults with ID.

The SOEEF provides health and fitness programs across all EU 28 through a network of local and national Special Olympics programs. In order to promote the implementation of the health and fitness initiatives at local Special Olympics Programs and reaching the goals, improving the health and performance of people with ID participating in Special Olympics is a fundamental element in the global Special Olympics strategy 2015-2020 serving as a mandate for local SO programs.

SOEEF is addressing health issues and health disparities people with ID face through year around comprehensive health and well-beeing initiatives adapted to the needs of people with ID. With its health programs (Healthy Athletes initiative, Fitness programs, Family Health Forums etc.) SOEEF is aiming to bring better fitness, healthy nutrition and healthier lifestyles to everyone involved in Special Olympics -- from athletes and their families, to coaches, care takers, health care professionals and students. SOEEF therefore is one of the most relevant and established public health organisation in Europe working directly with the target group through a wide range of hands on health activities in the above described areas.

(1) Special Olympics is the world largest sport organization for children and adults with an intellectual disability providing year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities. This gives them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community

Work performed during the reporting period

SOEEF sport programs:
Special Olympics provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community. The sport programs also include coach trainings and seminars introducing Special Olympics to new coaches as well as train coaches on importance of sport and fitness for people with ID and how to implement Special Olympics sport in their countries according to the specific sport rules designed to meet the needs of people with ID. SOEEF sport programs also include the UNIFIED sport initiatives where athletes with ID and people without disabilities (partners) play sport together in different sports. Special Olympics sport training and competitions are conducted on regional (Europe), national and local level.

The Healthy Athletes program (HA):
HA provides comprehensive health screenings and education addressing different health issues in seven different health areas and promoting healthy lifestyle across the life cycle through screening events volunteered by health care professionals. HA provides good practice with emphasis on innovative approaches to address major risk factors (for people with ID): obesity, osteoporosis, poor physical condition, bad vision and hearing (prevention of accidents and injuries), untreated tooth decay, smoking prevention as well as education specifically adopted to the needs of this population on how to improve their health such as education on correct brushing and flossing, physical activity, nutrition, prevention of hearing loss, foot care etc. aiming to empower them to manage their own health. The goal of HA is to improve athletes ability to train and compete in sport as well as improve their well being in daily activities. Furthermore, HA provide training opportunities for health care professionals as well as collect screening data to support raising awareness of health issues people with ID have and to advocate for improved health services for the target group. Healthy Athletes provided screenings and education in the following health disciplines:
Family Health Forums:
Family Health Forum initiative is designed to engage families of those with intellectual disabilities in SO and offer an environment where parents and caregivers can gain direct access to health information, resources, and support addressing the specific questions and concerns of family members. Family Health Forums have been proven to be a valuable and critical medium for families and Special Olympics will continue organizing forums across EUan countries. Main topics are prevention of obesity and chronic diseases as well as guidelines for healthy lifestyle for people with ID and their families. The forums involve local stake holders such as Universities, service clubs, doctors etc.

Train the Trainer for healthcare professionals (TTT):
Train the trainer seminars are theoretical and practical training events for health care specialists provided in the format of a standardized model within a Special Olympics Region. TTTs seminars and come-and-try events are well proven methods applied by Special Olympics in previous projects. At TTT’s the trainees get provided with technical assistance at all levels in order to be prepared to run Healthy Athletes in their countries and to provide improved health care for all people with ID. All trained health care professionals and students that volunteer at Healthy Athletes screening events and Train the Trainer programs help Special Olympics to reduce barriers and raise awareness. If a program raises the wish to expand and strengthen their health program, a suitable candidate for becoming a Clinical Director in his/her respective expert area has to be identified. This ca

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

SOEEF sport programs and coach seminars 2017:
Special Olympics Europe/Eurasia has implemented a series of regional sport events and coach seminars focusing on widen the reach to involve more people with ID through adapted sport programming and train more coaches to help athletes to perform their best in sports. Over 90.000 athletes have participated in regional and national events in the framework of major events and regional wide campaigns such as the European football and basketball week. 225 coaches received sport specific training and education of importance of adapted sport and fitness activities for people with ID.

The Healthy Athletes program:
In 2017 in total 179 Healthy Athletes discipline events have been conducted in 15 European countries. Over 25.900 screenings have been performed (see table below) by over 2500 health care professionals and students that volunteered their time. 1.337 prescription glasses were provided to athletes that had vision problems. In average there were 2 discipline screening events provided per Health Athlete event hence ca. 13.000 people with ID received comprehensive health screenings and education in seven medical areas 2017. Furthermore, a detailed analysis of screening data from 2016 HA events have been published. A milestone in 2017 was the implementation of the Healthy Athletes program at the 2017 Special Olympics World Winter Games in Austria in March 2017 co funded by the EU health program. The event not only provided health services to the athletes but also raised awareness among attending politicians and policy makers and others from around Europe.

Family Health Forum:
In 2017 SOEEF implemented 7 Family Health Forums (FHF) in seven European countries, raising awareness as well as educating 517 individuals about the health needs of people with an intellectual disability.

Train the Trainer for healthcare professionals (TTT):
In 2017 SOEEF trained 40 Health Care Professionals from 16 different EU countries to become a Special Olympics Healthy Athletes Clinical Director which exponentially impacts, contributes to and effects the well-being and health of Special Olympics Athletes from 16 different EU countries. Co funded by the EU Health Program In total 5 train the trainer workshops in 5 different EU countries were organized

Young Athletes program:
In 2017 co funded by the EU health program SOEEF organized a Young Athletes workshop in Hungary and trained 25 new young Athletes coordinators from 11 different EU countries aiming to expand the program to more countries and to reach more children with ID and their families to get involved in physical activity and healthy life style.

Community based health and fitness initiatives:
In 2017 co funded by the EU health program two European Special Olympics Programs (Romania and Malta) implemented a community based fitness initiative in different geographic areas (community) throughout the country. Special Olympics Romania focused on engaging athletes and partners (people without disabilities partner with SO athletes) in 10 different locations improving fitness and health behaviour of the participants through sport and fitness sessions as well as education on healthy nutrition and hydration. In total 184 athletes and 82 partners (family members, friends, coaches) were involved in the project. 5 partnership agreements were signed to support the implementation of the project throughout the year. A qualitative evaluation was conducted to document the impact of the initiatives. 66,5% of the participants were able to manage to lose weight. 52% of the participants showed significant improvements of blood pressure and heart rate.

Achieved outcomes compared to the expected outcomes

The outputs and outcomes of the activities stimulated the overall goals of the project namely reducing health disparities of people with ID by providing health interventions (Healthy Athletes, fitness and well being initiatives) as well as raising awareness and provide education to healthcare professionals, families and coaches and collecting and analysing health data collected through the Healthy Athletes program across Europe. The results of the evaluation of the different activities suggest a high impact on the target groups. For example 90% Healthcare professionals trained through the train the trainer program strongly agree or agree that after the training they feel more comfortable working and communicating with patients with ID. The majority of family members that participated in family health forums (strongly) agree that they the health of the family will improve as a result of the FHF. The survey also revealed what families think about the quality, availability and accessibility of national public health services for people with ID. The results of the answers to question one indicated that Croatia and Cyprus for the largest parts agreed/strongly agreed that the national health care plans and services in their countries are sufficient to cover the health care needs of people with ID. Results from Estonia, Hungary and Poland on the other hand show that the participants (strongly) disagree with this statement.
Furthermore, as a result of the high level Health events at the 2017 Austria World Winter Games, that was also witnessed by leading European politicians and ministers, Special Olympics Sweden starts implementing a nationwide health campaign called a “investing in public health for people with Intellectual Disability” in framework with their effort to host the 2021 SO World Winter Games seeking to integrate Special Olympics health programs into their national health structures. Special Olympics Slovakia, with collaboration and support by Slovakian MEP Jana Zitnanska, organized a conference aiming to raise awareness of health issues and disparities people with ID face in Slovakia and calling for action towards health care professionals and health care providers in Slovakia.

One of the major reason for health disparities in people with ID is insufficient training for healthcare providers as well as a general misconception that people with intellectual disabilities are unhealthy because they have intellectual disabilities. There is some truth to this in some cases. Certainly some conditions that cause ID are associated with some health conditions. People with Down syndrome, for instance, are more likely to have congenital heart abnormalities. It is so critical to understand that by large, most of the health issues faced by people with ID are secondary. They are the result of failures in our systems of disease prevention and health care. For instance, the majority of healthcare professionals around the world have exactly zero training in working with patients with ID and with their particular health concerns. Students graduate from medical school and dental school and nursing school with no understanding or experience taking a health history, communicating with someone with ID, or how to adapt their protocols or approaches to provide equitable care to this population. The only healthcare professionals who do receive training are those in paediatric specialties. This is legacy from an era where people with ID generally didn’t survive to adulthood. We now have many adult athletes in Special Olympics, including in many countries athletes in their 50s, 60s, and 70s, but the training of adult healthcare providers has never caught up.
In addition, there is a phenomenon called diagnostic overshadowing, where a physician sees a behaviour or a symptom and attributes it to the intellectual disability, rather than an underlying physical health condition. Sometimes a doctor can’t see beyond the disability – they see pa

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

For our focus target group (children and adults with an intellectual disability) the dissemination tools are in first place SO health related activities like sport training, competition and screening events providing opportunities for physical activities, health assessments, health education and referrals, as well as a driver for visibility of our activities to the public. Furthermore SOEEF provides information and educational leaflets, brochures or scorecards that demonstrate how to manage the athlete’s health on their own based on the recommendation they received from the health care professionals. The design and content of the information are adapted to the athlete’s needs. Informational leaflets about health issues of people with ID are also given to coaches and caregivers. The goal is to improve the health of the athletes on a long term perspective through empowerment. Families of people with ID receive critical health information and training at Special Olympics Family Health Forums. Health care professional and students also receive training through curricula (manuals,training DVDs, ppt) targeting the medical and screening aspect for people with ID and information on how to organize screening events. These materials are given out at training sessions at the actual screening events. Through participation at Healthy Athletes events health care professionals and medical students experience first hand how to interact and screen people with ID. The ultimate goal is to improve quality health care for people with ID and to ensure that health care professionals have the understanding and skills to adequately treat people with ID. The public is provided with information about SOEEF activities through monthly Newsletters and through the SOEEF Homepage, Facebook and Twitter through after action reports, impact stories, athletes and volunteer profiles as well as press releases.