European Autism Public Health Alliance (eapha)
eapha is the European Autism Public Health Alliance of stakeholders working to create a pan European public health plan for autism.
Vision
eapha aims to transform the lives of persons with autism, their families and carers by providing a plan of action and an ongoing forum for parents' organisations, academic institutions and public health agencies to share knowledge, experience and skills and to promote advocacy for the needs of people with autism.
Mission
eapha mission is to design and promote a public health planning framework in order to achieve the long term vision of transforming the lives of persons with autism, their families and carers in Europe.
Core values
eapha core values reinforce the importance of a strategic plan addressing the complexity of ASD situation in Europe.
Organised response – organization is a key element to obtain the most rapid and effective response that persons with autism, their families and carers needs in the European context.
Excellence – We propose the highest standard of care, quality of clinical and epidemiological research as well as political framework in the interest of persons with autism, their families and carers in Europe.
Tolerance – We treat others with respect, listen to diverse views with open minds, and foster discussions where participants can comfortably offer opposing opinions.
Alliance in Action – Grounded in a common aim with multi-disciplinary approaches, data sharing, teamwork, and partnerships with clearly defined roles and responsibilities.
Accountability – We have developed and will continue to develop SMART (Specific, Measurable, Achievable, Realistic, and Time-bound) research objectives aligned with funding priorities and develop systems for evaluation and course corrections.
Strategic objectives:
1) To protect persons with autism, their families and carers by organising the appropriate services facilities according their particular needs at all levels of the EU for 2020.
2) To contribute in the identification of determinants and risk factor for ASD in EU for 2020.
3) To develop a common strategy for advocacy and awareness including specific education and training programme across Europe
4) To propose and implement a political and legal frame to support the actions at all levels of the EU
5) To implement an epidemiological program based on Good Epidemiological Practice (GEP) that will contribute to a better understanding and knowledge of the prevalence, distribution, economical impact and pharmacological-vigilance on ASD in Europe.
• Background
• Need for greater coherence within the EU
• Foundations laid by the EAIS
• The European Autism Public Health Alliance (eapha)
• European Autism Action 2020 (EAA 2020)
• eapha services and activities
• Resources and finance
Background
Recent years have witnessed an apparent increase in diagnoses of autism spectrum disorders (ASD) in Europe and other parts of the world. However, the reasons underpinning this increase are yet unclear as one of the main difficulties in estimating prevalence of ASD, in a historical perspective, is the fact that understanding and knowledge of autism by health systems, professionals and researchers have improved over the past decade and today disorders are more readily recognised and diagnosed. The current best estimate of the prevalence of autism spectrum disorders is around one in every hundred children* .
Early and intensive education and rehabilitation can help children with ASD to develop and learn new skills. Prognosis is greatly improved if a child is placed into an intensive and highly structured educational programme by the age of two to three-years-old. Therefore, early identification of children with ASD could increase the effectiveness of their treatment. Focus on early identification and prevalence is critical in establishing public health responses and in ensuring appropriate support and treatment for affected children, adults and their families. At a time of growing European integration at all levels and in all areas, including knowledge management in and between public health systems, it would be important that member States of the European Union (EU) can learn from each other's experiences and research and share key information and systems, particularly from those countries which have already established public health responses to ASD. In addition, member States should look beyond the boundaries of Europe to create alliances and partnerships with relevant institutions in other parts of the world which have also been studying ASD and elaborating appropriate public responses, particularly in the USA where there has been considerable research and advances in this field.
However, to date, there are no existing European-wide information and knowledge management systems on the prevalence of ASD. Furthermore, there are many challenges in establishing such systems, including for example, a lack within and between EU and transition member States of consistency in diagnosis, agreement on case definition and in case finding methods. The issues that continue to surround ASD also affect public health responses because of the significant social and economic costs in treating the disorders. In elaborating adequate and appropriate public responses, government health authorities and institutions need more information and detail on the level and nature of these costs. At EU level, the social and economic costs of ASD have not been adequately recorded, primarily because epidemiological figures are unreliable and inconsistent within and between member and transition States.
The ongoing lack of understanding and coherent and consistent practices surrounding ASD have exacerbated the difficulties facing those affected and their families in accessing adequate and appropriate public services, including health care, education and social support. The later the intervention in an affected child's life, the greater the time and cost involved in providing health care and support services. Evidence indicates that it would be more cost effective for governments and more humane and dignified for the child and the family to intervene as early as possible in cases of ASD. However, in order to convince EU member States of this need requires quantitative and qualitative research, not only at national but also at regional level.
In addition, adults with ASD suffer further challenges through the difficulty in transitioning from childhood to adulthood, for example, benefiting from higher and vocational education, being able to access decent work opportunities, enjoying relationships with their peers and life partners and leading a dignified, rewarding and fulfilled adult life. In this respect, it would be important to focus equal attention qualitative and quantitative research into the needs and expectations of adults with ASD.
*Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Lancet. 2006 Jul 15;368(9531):210-5
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Need for greater coherence within the EU
There are a number of support and information networks, associations and societies established in Europe, and worldwide, focusing on support services for children, adults and families affected by autism. In most cases, these are private entities and often established by concerned parents. They provide a vital service, particularly in providing guidance on what support services are available, how to access them and what their entitlements are within public support systems, particularly health, education and social services. These organisations and networks are a major cog in the mechanism of support and care for affected children, adults and their families, although they struggle with the lack of services available, a coherent public health response and government commitment.
However, there needs to be a similar level of knowledge management, interaction and networking for medical and health practitioners and at regional level. On the one hand, affected children, adults and families need to be informed about the nature of the disorders and what support services, if any, are in place to assist in dealing with the symptoms and helping children and adults through education and care services. On the other, it is vital that research and information are shared between medical and health practitioners and researchers to ensure that appropriate responses can be developed through public health systems, at national and regional levels. This is clearly not a straightforward matter in a region as large and diverse as Europe where there are significant differences between countries in terms of standards and development in public health systems and services, language, capacities, and so on, especially for transition and accession member States. When considering the issue of public health at European level and looking at trends and indicators, it is vital to work with data that are comparable which underlines the need for consistency, coherence and reliability in measurement mechanisms and indicators.
Since 2005, ASD has been included in both the 'Rare Diseases' and 'Major and Chronic Diseases' Task Forces of the European Commission (EC). Although some conditions or syndromes within the autism spectrum can be categorised as rare diseases, there is an argument for no longer categorising ASD as such. Indeed, the public health burden of these disorders is now considerable. As early as 1996, the European Parliament launched an official declaration in which it urged the EC to fully support any effort and project to develop the rights of people with autism.
Against this backdrop and with the support of the EU, the Irish-based Hope Project, led by Dr Alvaro Ramirez of the Chiren Therapy Centre, carried out a project from 2006 to 2008 to establish the European Autism Information System (EAIS) to address the lack of systematic, consistent and reliable data about ASD in Europe and the lack of agreed and harmonised early detection tools across the EU. By adopting an articulated strategy, including networking among major European stakeholders, the project aimed to mobilise the scientific community to discuss and agree upon appropriate tools to measure and monitor cases of ASD and the economic impact they have on families and States. The ultimate aim of the EAIS project was to establish an information system to record ASD data that will be endorsed and ultimately used by stakeholders in the EU.
The project also involved a number of reputable institutions, organisations and individuals in the field of ASD across the EU. The six main project partners were:
• Institute of Psychiatry, King's College London, United Kingdom
• North Atlantic Neuro-Epidemiology Alliances (NANEA), Institute of Public
Health, Aarhus University, Denmark
• Azienda Ulss20 di Verona, Italy
• Rare Disease Research Institute, Carlos III Health Institute (ISCIII-IIER), Spain
• Department of Epidemiology and Public Health, University College Cork (UCC), Ireland
• Autistik, Czech Republic
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Foundations laid by the EAIS
The EAIS project conducted activities and formulated strategies in the following four key areas to improve the quality of life of children and families affected by ASD:
• Establishing accepted characteristics of ASD to facilitate studies on prevalence across Europe. This work included the design of a European Protocol for Autism Spectrum Disorder Prevalence.
• Establishing common criteria to assess the financial burden of identifying and treating disorders in different countries, including provision of appropriate services.
• Developing mechanisms to obtain systematic, reliable and consistent data on ASD in Europe, in particular through the design of a database registry programme to facilitate the establishment of a European population-based surveillance system for ASD.
• Developing a harmonised early detection tool through screening to facilitate early diagnosis of ASD.
The EAIS project succeeded in laying the foundations for each of these four key strategic areas. It also highlighted the challenges and complexities in creating an information network for consistent and reliable information on ASD within the EU. However, its important work marked the beginning of a long journey and much remains to be done. The EAIS project has highlighted a number of activities that are required to reinforce progress made in the field of ASD, including establishing a comprehensive set of selection criteria for pilot study areas of the harmonised tools developed by the EAIS and proceeding with the implementation and follow-up of these studies. The EAIS aimed to help a growing percentage of the EU population that is affected by ASD and to facilitate a more reliable interpretation of autism trends in Europe which would contribute to effective and informed decision-making by public health authorities and to developing vital policies and programmes. Ultimately, the EAIS project outcomes could be further developed to become a comprehensive EU surveillance system of ASD.
The European Autism Public Health Alliance (eapha)
Therefore, it is vital that that the initial work of the EAIS project is moved forward in a coherent and comprehensive manner. Although there remain major challenges to be tackled in the field of ASD in Europe, significant progress can and has been made in recent years that serves to reinforce the ambition and determination of those who work for these vulnerable children and adults to continue their quest to improve their lives and those of the families who care for them. ASD is an emerging public health issue that challenges the very fabric of society and, as such, demands a global public health response of equal proportion, determination, courage and resources. This document seeks to outline an effective strategy to move the agenda on ASD forward in Europe within the context of the achievements of the EAIS project.
An important outcome of the EAIS project that sets out the framework of this document was to lay the foundations for the creation of a new sustainable network on ASD, the European Autism Public Health Alliance (eapha), as a multi-stakeholder forum to facilitate communications between and co-ordination of professional expertise in the EU on:
• Early detection and diagnosis of autism
• Management of data systems (surveillance)
• Prevalence and financial burden of ASD in the EU
• Interventions and treatments of ASD
• Public awareness of ASD
Essentially, eapha aims to bring together the various stakeholders either working in the field of ASD or representing those affected by these disorders, comprising the four main groups below:
• Organisations representing those affected by ASD, their families and carers in different European countries
• Research and academic institutions
• Public health agencies and institutions
• Other relevant public service agencies and institutions
These groups represent those affected by ASD and its consequences, as well as those who are seeking to identify its causes and effects and therefore future treatment and preventive action. In addition, they represent those public bodies which are responsible for the development and provision of services to those suffering from or affected by ASD, including families. There are strong links between all four stakeholder groups which is why it is vital that they are equally represented within the alliance to facilitate awareness, understanding, communications and sharing of information and knowledge.
Organisations representing people affected by ASD
These groups are the driving force behind the growing activism in Europe to raise awareness of ASD in society and to lobby governments, the EC and other EU bodies to advocate for enhanced service provision to help those affected by ASD, their families and carers. Early detection is particularly important for children with ASD and their families. The EAIS project highlighted the significant divide between the needs and expectations of people with ASD and their families and the actual level of service provision in the fields of health, education and social services. eapha aims to ensure that all stakeholders have a voice in ongoing coordinated efforts to tackle ASD in Europe. The alliance will provide a forum for people to contribute meaningfully to discussions and to empower those affected by ASD in policy and programme development at national and EU level.
Research and academic institutions
The role of research institutions is critical in finding out more about ASD and understanding it better, including its causes, such as those related to genetics and environmental risk factors, as well as diagnosis, treatment and other interventions, for example, early detection and the role of neuroscience. Research and academic institutions will aim to further support European and global research into the causes, consequences, diagnosis and treatment of ASD. An important outcome will be to develop and/or strengthen communications and coordination between relevant scientific, medical, research and academic stakeholder groups across the EU and other countries and regions, in particular, the USA.
Public health agencies and institutions
One of the major objectives of eapha is to lobby for an EU-wide public health programme to be developed and implemented to tackle ASD and ensure adequate provision of vital public services to those affected, their families and carers. As well as involving government health and medical agencies and institutions from across the EU, eapha will also further strengthen its collaboration with the EC's DG-SANCO with the aim of establishing and improving data collection and analysis and information and surveillance systems relating to the prevalence of ASD in EU member States to support early detection and diagnosis, treatment, follow-up and service provision. These elements underpin the development and implementation of an EU-wide public health programme on ASD.
Other relevant public service agencies and institutions
As part of its advocacy activities, eapha will focus on coherence and integration of public service provision for ASD sufferers and their families. In particular, eapha will seek the involvement and support of agencies and institutions in the area of education, particularly special needs, vocational education and skills training, health and social services. Research into the situations of those affected by ASD points to an urgent need for a coherent package of integrated service provision to alleviate the burden, financial and otherwise, on families and carers, and ensure that people with ASD can benefit from their fundamental rights to education and training, life skills activities, recreation, and a dignified, decent and fulfilled life.
Next steps
The structure, mechanisms and activities of eapha will evolve through detailed discussions with different stakeholder groups, taking into account their needs and expectations. Although there are many common areas of concern and interest shared by each group, their perspectives, positions and requirements differ considerably. In addition, there are significant differences between EU member States in terms of diagnosis, treatment, service provision and support. By bringing these four stakeholder groups together within the framework of eapha and from across the EU, sharing information, experiences, expertise and views in an open and constructive forum, it is anticipated that major advances could be made to elaborate, endorse, promote and follow up an agreed regional public health approach on ASD. This approach would inform and guide national responses to ASD and ensure coherence and consistency of policies and programmes to provide adequate and meaningful support to those affected.
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European Autism Action 2020 (EAA 2020)
The establishment of an EU public health programme on ASD is the ultimate goal of the proposed eapha initiative "EAA 2020" which aims at improving the quality of life of individuals affected by ASD. eapha will mobilise and engage with the stakeholder groups, individually and collectively, to elaborate a ten-year strategic plan to be launched on 29th November 2010 during the founding conference of eapha in Dublin, Ireland. By 2020, eapha aims to ensure that an EU-wide ASD public health policy and programmes are in place and operational, focusing on risk factors, early detection, diagnosis, prevalence, health promotion, treatment, surveillance, monitoring, awareness, support services and prevention.
The process and activities will take into account that a number of EU member States are relatively advanced in their own national policies and programmes on ASD and eapha looks forward to the involvement of the stakeholders from these countries in these discussions and their active and constructive contributions to the development of EAA 2020 and shaping a future EU policy and programme. The extent of the differences between member States in terms of addressing ASD highlights the critical role that eapha can play in building on the experience and expertise of some partners and providing targeted and detailed technical support to those most in need. The approach of eapha embraces the true spirit of the European Union.
Institutional structures
eapha is expected to operate through various mechanisms and networks, including – but not exclusively – seminars, workshops and conferences, bringing together relevant experts, interest groups and stakeholders to reach consensus on European ASD issues and to build on the foundation work of the EAIS project. It will establish a register of relevant professionals to facilitate an enhanced knowledge management system and network on ASD in Europe.
The EAIS project coordinators are determined to move the creation of eapha forward in the short-term as it is vital that high-level collaboration of experts and stakeholder groups in the field of autism epidemiology continues to ensure that momentum is not lost and that the goals of EAA 2020 can be reached. As a first step, Irish Autism Action (IAA), with the support of EC DG-SANCO, is organising the Autism2010 conference entitled "European Autism Action: Conference on a European strategic plan for autism". Participants will be invited from the four stakeholder groups identified above and from across the EU and will prepare for the conference through two European sub-regional consultative meetings. The conference has three specific objectives:
• To create, mobilise and facilitate representative sub-regional consultative groups of experts and stakeholders to discuss and finalise the terms of reference of the EAA 2020 strategic plan.
• To establish a Scientific Committee of Experts for consultation and guidance in the finalisation, implementation and follow-up of the EAA 2020 strategic plan.
• To progress the establishment of eapha and consolidate and expand its role as a regional forum to share, coordinate and disseminate knowledge and information on ASD across the EU and to act as a vehicle for EAA 2020.
The conference will also play the role of founding congress of eapha and efforts will be made to promote the importance of the Alliance before, during and after the sub-regional workshops and to mobilise and engage potential members from different European countries.
Secretariat
eapha will be established initially as a charitable organisation in the Republic of Ireland. Dr Ramirez and his team, supported by the expertise of partners developed during and since the EAIS, including Irish Autism Action and Autism Speaks, will assume the role of secretariat in its early stages of development, but this may change in the longer term as eapha evolves and develops as a regional alliance. The secretariat will include the following posts which will not all be full-time positions in the early stages of its work:
• eapha Coordinator
• Project and Finance Administrator
• Communications and Marketing Coordinator
• Fund-raising Coordinator
Through the acclaimed work of the EAIS, eapha has already established close relations with a number of key organisations and professionals around the world in the field of ASD, including the Centers for Disease Control (CDC) in the USA, which have indicated their strong support for the concept and objectives of an EU-wide alliance in this field and a well-articulated regional strategic plan to address the causes and consequences of ASD. The secretariat will further develop these relations in pressing ahead with its agenda.
Executive Committee
Once eapha is established and its constitution is finalised and endorsed by Alliance members, an Executive Committee will be elected through democratic processes. The Committee will be drawn from the four stakeholder groups to ensure equal representation. It is recommended that a president and four vice-presidents, to represent each of the stakeholder groups, will be elected to provide leadership and representation of the organisation. The Committee will meet at least once a year to oversee the work of eapha and the secretariat and to discuss institutional and substantive issues as they arise. The day-to-day management of the Alliance and its activities will be assured by the secretariat. The Executive Committee will appoint sub-committees as necessary and required by the constitution and the work of the Alliance, for example, a finance committee to provide oversight of the management of various resources.
eapha's finances will be subjected to independent scrutiny as required by law and to ensure full transparency and accountability.
Stakeholder and thematic groups
eapha envisages an inclusive structure which will ensure that each stakeholder group is equally represented and has an equal voice in policy and programme determination. This would mean that four sub-committees would be established representing the four stakeholder groups to ensure that each would have its own space and sub-structures to discuss issues of specific relevance and interest, or to discuss broader institutional issues to define and promote their own perspectives and concerns, for example, in policy and programme development. Each group would establish and elect a representative sub-committee and set its agenda accordingly, taking into account the wider institutional programme objectives, particularly EAA 2020, but with the flexibility to address issues of specific concern and interest.
Over time, eapha will establish sub-groups to address thematic issues as and when they arise. These thematic issues may include prevalence, service provision, data collection, surveillance and monitoring, and awareness raising. The thematic sub-groups will include representatives from each of the stakeholder groups to ensure coherence and integration. This will facilitate and strengthen policy and programme development and contribute to the emergence of national and EU public health programmes on ASD that are inclusive and are endorsed by the different stakeholder groups.
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EAPHA services and activities
In shaping itself as a centre of excellence on ASD, eapha will offer a range of services and activities to its members and others that will aim to address needs and expectations as they arise. These services and activities will become more clearly defined over time as the Alliance grows and needs and expectations are articulated. As a regional alliance, there will be significant differences between the needs and expectations of stakeholder groups across Europe and eapha will address these through the creation of a peer support network to ensure that experience and expertise are shared and used effectively and efficiently.
Projects
An important element of eapha's work will be to follow up the critical outcomes of the EAIS project, particularly in the field of prevalence studies, validation studies on early detection and the development of a European database on ASD. eapha, in collaboration with partners and stakeholder groups, will develop comprehensive project proposals for submission to a range of potential donors, including the EC (DG-SANCO and other relevant DGs), national governments, aid agencies, bi- and multi-lateral organisations and private foundations. These projects will continue the work of the EAIS in contributing to vital research and knowledge development in the field of ASD, further pursuing the objectives of EAA 2020, and working towards the development of national plans of action and an EU public health programme.
Projects will be implemented, managed and followed-up by fixed-term project staff hired within the context of each project's resources as necessary, or by the secretariat itself. Overall coordination and backstopping, including financial oversight, will be assured by eapha secretariat and Executive Committee.
Conferences, workshops and related forums
The work of eapha will carry significant authority in global efforts to address ASD, particularly in terms of the involvement of its scientific and academic members. In this respect, based on resource mobilisation efforts, eapha will seek to organise regular conferences, workshops and related forums to address specific issues of concern. The first of these will take place in 2010 with eapha conference on EAA 2020. In future, through discussions with stakeholder groups and partners, eapha will aim to fulfil the goals of EAA 2020 through the organisation of regular meetings and information exchange. These may be international, regional, sub-regional or national as required and the issues will be drawn from the content of the EAA 2020.
In addition, eapha will participate in meetings organised by third parties to reinforce its partnerships and to promote the work of the alliance and its activities in Europe.
Advisory services
eapha will also develop advisory and consultancy services for members and third parties. Where possible, these services will be self-financing. In the short- to medium-term, eapha will not develop internal capacity to provide technical and other advisory and consultancy services and support as this would be inefficient and costly. The aim would be to develop a global network of technical experts in different fields related to ASD and to contract their services as required. In some cases, this may require direct advisory services, for example, to assist public health authorities in developing a national plan of action on ASD, whereas in others, it may involve one-off capacity-building exercises, for example, training in awareness raising methodologies specific to ASD.
As an alliance and through the development and strengthening of its partnerships, eapha will gradually build a comprehensive network of technical experts in different fields to contribute to the achievement of EAA 2020 goals and to its own establishment as a centre of excellence. A fee structure will be developed that will contribute to eapha's own resource base and institutional costs as well as the cost of hiring technical experts. These services will therefore facilitate the growth and development of eapha to enable it to become financially independent in terms of its institutional cost base. In this way, it will be able to develop its own internal capacities and structures over time.
Communications
Awareness raising and communications are important elements in the life of any organisation, but more so in the early stages of development. eapha will take over and further develop the EAIS web site as a key communication tool for members and third parties. Using the web and other media tools and strategies, eapha will strengthen its partnership and membership activities and services while raising the public profile of ASD and raising awareness among different stakeholder groups.
eapha will seek to establish close links with existing ASD organisations and alliances across Europe and worldwide to avoid duplication of effort and resources and to ensure greater coherence of effort, policies and programmes. The ultimate goal is to create solidarity between interest groups and to achieve comprehensive public health policies and programmes for those affected by ASD, their families and carers. Communication is crucial in achieving this goal and this area of work will be further developed in the coming months and years.
Resources and finance
As a charitable organisation, the issue of finance is central to the objectives and ambitions of eapha. The secretariat already has significant experience in the field of project development which will be one of the sources of financial support. However, it is vital that eapha has a broad resource mobilisation strategy that will enable it to conduct its regular institutional activities and to grow and develop as a regional alliance.
With the approach of the first eapha conference in 2010, efforts are already under way to mobilise resources to cover the costs of this activity in Dublin. As can be seen from the section on the secretariat, eapha will benefit from the services of a fund-raising coordinator as well as the fund-raising efforts of its associated partner, the IAA. Fund-raising activities will explore both public and private possibilities, examining the sponsorship and corporate social responsibility policies and programmes of different bodies and companies and developing tools to mobilise and engage potential sponsors. Efforts will be made to develop financial support packages that take into account the interests and resource capacities of different sponsors and to further promote the work of eapha among public and private entities, including relevant foundations.
Project management services will include institutional support for eapha's core activities and structures, as will advisory, consultancy and technical services. The aim will be to assure self-financing for all core activities of the alliance so that funds raised by eapha can be directed towards activities for the benefit of members and the achievement of the goals of EAA 2020.
In addition, membership of eapha will be on a fees-paying basis which will be set according to a sliding scale yet to be determined. The scale will take into account the financial capacities of different members from around Europe. Clearly, the task before eapha is to achieve its goal as a centre of excellence on ASD-related issues and to assure the quality of its activities and services for members so that membership will grow accordingly. Requiring members and partner organisations to pay fees to eapha will build a sense of ownership and involvement among members and encourage their full participation in its activities and support for EAA 2020. These fees will contribute to the costs of regular core activities and structures of eapha.