By Anton Došen, Founder and Honorary President of the Association

Background

The idea for the formation of a European Association for Mental Health in Persons with Intellectual Disability (EAMHID) dates from the late 1980’s and early 1990’s. That was a time of a growing concern in society and among professionals for the quality of life of people with intellectual disability (ID). The Normalisation movement in Sweden in the 60’s of last century led to important changes in residential, vocational, educational and several other aspects of life of persons with ID. In a number of western European countries children and adults with ID were liberated from long-stay psychiatric hospitals and big institutions, and were included in programs of deinstitutionalisation and integration into community life. However, the normalisation movement had only marginally touched on the mental health and behaviour problems of this population, which now became more apparent and requiring of professional help. The open question was whether the regular mental health systems for the general population were capable of providing mental health care for people with intellectual disabilities, or was there a need for specialised mental health services to address this task? The discussion also concerned the form of the specialised mental health care that should be available: specialised hospitals and special units within general psychiatric hospitals, specialised community-based facilities, locally-based units for specialist treatment, specialist teams and similar. In different countries the development of the care for this population took different directions. In the United Kingdom for example intellectual disability traditionally has been recognised as a psychiatric specialty and there was a strong “mental handicap” Faculty within the Royal College of Psychiatrists. Ken Day and Nick Bouras, among others, strongly supported the development of specialised mental health services in the UK. The service could be hospital-based, as well as community based. It was clear that specialised mental health care for this population should also include development and gathering of professional knowledge and skills, as well as work on special training and education of all professionals involved in care. Good news came also from the USA, where pioneers like Frank Menolascino, Ludwig Sczymanski, Robert Sovner, Steven Reiss, William Gardner and others were pointing to the specificities of behaviour and psychopathology and related diagnostic difficulties in persons with ID. In early 1960s Frank Menolascino together with Wolf Wolfensberger started a world renowned ENCOR project in Nebraska. This was a project for the provision of community-based services, with an emphasis on the development of care for mental health in persons with ID. Thanks to the initiative of Donald Zarfas (Canada) and Frank Menolascino the Section for Mental Retardation within the World Psychiatric Association was established. In 1983, Robert Fletcher (USA) initiated the foundation of the National Association for the Dually Diagnosed (NADD) with the purpose of encouraging the exchange of knowledge, the promotion of education and training and the support of research in the field of mental health care for people with mental retardation (MR).
The developing picture in these nations had an essential influence on changes in policy-making concerning the care for people with ID in different European countries.

Foundation of the EAMHID

At the time of these aforementioned developments, in most European countries mental health care for people with ID did not exist; only in a few countries were there the beginnings of developments in this field. In the Netherlands, Anton Dosen took the initiative of creating an international professional network with the purpose of sharing the existing knowledge between different professionals from different countries, aiming in this way to promote mental health care for this people with intellectual disabilities. In these efforts he was supported by colleagues from the UK and the USA. In cooperation with the Netherlands Organisation for Post-academic Education in the Social Sciences (PAOS) under the leadership of Paul Engelen he organised several conferences with international participants on significant issues such as depression in persons with ID (in 1988) and treatment of mental illness and behaviour problems (in 1990). These conferences attracted a lot of attention from professionals from different countries. The plenary speakers were distinguished practitioners and researchers from UK, USA, Denmark and Netherlands. On the basis of these successful conferences the idea was born for forming a European association for the promotion of mental health care for people with ID. Anton Dosen, supported by the initiative group of distinguished Dutch professionals (Gosewijn Zwanikken, Willem Verhoeven, Ad van Gennep, Jan van Borssum Waalkes, Bob van Zijderveld, C. van den Muisenbergh and R. Vegelien) in co-working with Paul Engelen organised, on 8 & 9 October 1992 in Veldhoven, the foundational “European Experts Conference on Mental Health Care for People with Mental Retardation”. The invited participants were from thirteen European countries: Netherlands, United Kingdom, Germany, Belgium, Italy, Denmark, Sweden, Croatia, Spain, Hungary, Greece, Switzerland and USSR. Several colleagues from the USA also participated in the conference, which was sponsored by the Section for Mental Retardation of the WPA (Frank Menolascino) and NADD (Robert Fletcher and Louis Fussaro). Each participant from Europe presented the current situation in their own country concerning the care for people with ID in general and the care for mental health of this population in particular. The conclusion of the conference was that the formation of a European Association for Mental Health in Mental Retardation (MHMR) was necessary for the promotion of mental health in people with ID. The Association’s aims were the stimulation and facilitation of international cooperation, exchange of knowledge and experience in the field of mental health care for people with ID, coordinating and promoting scientific activities and improvement of standards of service provision throughout European countries.
An Executive Committee was formed comprising A. Dosen (NL) President, K.Day (UK) Vice-President, W.Verhoeven (NL) secretary, and the members: C.Gaedt (G), M.van Wallenghem (B) and N.Bouras (UK). The Association’s constitution and the bylaws were made, and in 1993 the Association was registered under Dutch Law.
The Association was a professional organisation and membership was open to all persons who work in the field of mental health care and the care of people with ID. The Association had good relations and collaborated with NADD, the Section for Mental Retardation of WPA, and the SIRG-MH of the IASSMD through sponsoring the conferences and participation in the meetings of these organisations.

Activities of the Association

The Association’s activities were:

• organisation of international and regional meetings,
• publication of newsletters, journals and books,
• establishment of international exchange programs for researchers, professionals and carers,
• promotion of international collaborative research projects,
• provision of consultancy services at local, national and international levels on the development and provision of services,
• promotion of educational and training programs.

The first Association’s congress took place in Amsterdam in 1995. The congress was very successful and the number of Association’s members grew to 100. The executive committee, as well as other members were involved in various activities including participation in international training, research and development activities and in participation in international projects like the EU project Helios II, BIOMED II in Spain and MATRA project in Croatia. Members were also stimulated to organise symposia with the subject mental health care within different international and national congresses and were supported in the establishment of national associations for mental health in persons with ID their own countries.
The Association published the proceedings of the foundational conference in Veldhoven within the Journal of Intellectual Disability Research (JIDR), volume 37, supplement 1, 1993. The MHMR Newsletter was published, and from 1997 a special issue in mental health as an official publication of the Association in the Journal of Intellectual Disability Research was published twice annually with editors Nick Bouras and Bill Fraser. Several brochures and booklets were published including ABC for Mental Health by Bouras et al, 1999, Practice Guidelines for Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability by S. Deb et al 2001, and Practice Guidelines and Principles for Assessment, Diagnosis, Treatment and Related Services for Persons with Intellectual Disabilities and Problem Behaviour, by A. Dosen et al. 2007.
The work in organising the Association’s congresses required a lot of time and was usually assigned to the board member from the country in which the congress was to be held. The second Association’s congress was in London in 1999, and following this the intention was to organise a congress every two years in other countries with the intention of supporting the development of mental health care in the host country. There followed congresses in Berlin 2001, Rome 2003, Barcelona 2005, Zagreb 2007, Lisbon 2013; congresses were also organised for the second time in Netherlands, U.K. and Italy . All congresses were well attended (usually 300 to 500 participants) by professionals from different countries around the world. The largest number of participants were from the country which organised the congress, corresponding with the intention of the Association.
During the congress in Rome a change of several board members took place. Anton Dosen, Nick Bouras, Ad van Gennep and Pat Frankish stood down and Ljiljana Igric (Croatia), Giampaolo La Malfa (Italy), Ramon Novell (Spain) and Patty van Belle (NL) became new members of the board. Anton Dosen was appointed as honorary president of the Association and would be a link between the Association and activities across Europe, and Nick Bouras would be a link to the JIDR. In Rome there was the proclamation of a Declaration regarding the promotion of interest and services for people with ID and mental health needs
Over time the main task of the Association became the organisation of the congresses and publishing of the Association’s Journal. The recent scientific investigations in the field and developments in the practice presented at the congresses as well as the exchange of experiences and knowledge between the congress participants made the congresses attractive and interesting for the workers in the field. However several previous aims, like support and participation in national projects, education and trainings of professionals, and provision of consultancy remained unfulfilled.

Conclusion

Looking at the activity of the EAMHID during the past 20 years, it may be concluded that the Association had and still has an important role in development of the care for mental health in persons with ID in different countries. The standpoint of the Association was that, in addition to the principles of normalisation and social integration and inclusion, the care for mental health is indispensable for a proper quality of life of people with ID. The aforementioned goals of the Association have been pursued with various results in different countries. In some countries mental health care is recognised as an important part of the general care for this population, while in others development of care is just in its beginning or is totally absent (e.g. in some countries of Eastern Europe). Several European countries (e.g. Denmark and Sweden) have made a choice for the “hard line” of normalisation and do not pretend to develop a special mental heath care for this population; they participate, but seldom, in Association’s congresses. In each country in which the Association’s congress was organised a growing of professional interest for the mental health in people with ID was remarkable. Valuable contributions of different professional disciplines at the congresses confirm the necessity for cooperation of all professional disciplines in mental health care. Developmental and Integrative approaches in diagnostics and treatment were seen as specific and beneficial for this population. The congresses also had an impact on the policy-making and organisation of the care for people with ID, as well as on the cultural attitude of the professional workers in the field. In short, the Association’s activities have contributed to the growing awareness amongst professionals that the people with ID can have a healthy (normal) mental life if they are supported and cared for in optimal environments.

Future recommendations

Originally the strategy for development of appropriate mental heath care for persons with ID proposed by the Association was divided in three priority steps (Dosen 1995):

1. Stimulation of healthy mental development and protection of healthy mental life.
2. Prevention of problem behavior and psychiatric disorders.
3. Combating behavior problems and psychiatric disorders.

Following this strategy the Association’s officers intended to establish a basic structure for development of mental health care for this population. So far, however, the emphasis has been of the Association’s congresses has been combating the disorders. In the meantime, knowledge concerning the diagnosis of disorders and recognition of symptoms has increased, as have current treatment possibilities. However the meaning of the diagnosis and onset mechanisms of disorder often remain obscure leading to inappropriate treatment. It is obvious that for better understanding of mental health problems in this population a deeper insight into the psychosocial needs and in the developmental path of individuals is necessary. For this purpose the developmental approach with its emphasis on emotional development deserves further attention of professionals in the field. Recognition of basic emotional and social needs which should be met by the environment, in order to support a person’s mentally healthy development, should be an important task of the carer.

The Association’s task should also be work on the change of cultural meaning concerning the phenomenon of intellectual disability. The current focus on learning of cognitive skills should be changed to focusing on emotional and social development. This change of paradigm should be introduced in the attitude of parents, school teachers and other professional carers. The change of cultural attitude asks for activity of the Association on local levels through organisation of information, education and discussions with a broad public.
An important task of the Association should be the education and specialisation of professionals for work in the care, and formation of specialised mental health teams. The Association should also make considerable efforts to urge the introduction of the subject of mental health within curriculum of university students of medicine, psychology and other social sciences. The issue of mental health in people with developmental disabilities should receive more attention within general psychiatry, and the possibility for sub-specialisation of psychiatrists for this task should be more widely available.
This means that the task of the Association should not only be the organisation of congresses, but stimulation and support of development of the mental health care in different countries and work on different aspects with the purpose of optimisation of care. For these activities adequate financial support of the Association is indispensable. Requests for funding for Association’s projects by EU officials are necessary.