Interview with Tanja Sappok from the EAMHID-Newsletter

First, allow us a personal question: how did you become involved in the field of intellectual disabilities (ID)?

Well, actually this happened by chance. As a last step of my residency in neurology, I worked in a psychiatric hospital which comprises a special unit for adults with intellectual disabilities and mental health problems. This treatment center is assigned by the city of Berlin to take care of the mental health problems of all citizens with ID in Berlin.

When I began in this service, I was fascinated by the complexity of the work, the diagnostic challenges and the often fundamental treatment effects. I really enjoyed, and still enjoy, working with the people, their honesty, their gratitude and joyfulness, but most of all the unexpected viewpoints and behaviours. This totally different way to experience reality enriches my life. Similarly I enjoy the collaboration with my various colleagues from different professions and backgrounds; their open-minded collaboration results in a surplus of knowledge and output.

Can you tell us how care is organized for people with ID and mental health problems in Germany and can you tell us something especially about your work in this field?

Until the seventies/eighties, people with ID, especially those with severe to profound ID, used to live in hospitals such as the one I am working at right now. Indeed, some of my patients still can tell touching stories about their experiences within the building  which now serves as a respected treatment centre in Berlin and beyond. After the German resolution for psychiatry in 1975, persons with chronic mental health problems or ID moved from the hospitals into residential homes and step by step into the communities. Most hospital wards for persons with ID were closed and for decades only very scattered inpatient and barely any outpatient services existed.

Fortunately, the public awareness for mental and physical health in ID has been growing in recent years and in 2015 the German government issued a law that allowed the foundation of outpatient clinics (“Medizinische Behandlungszentren für Erwachsene mit Behinderung”, MZEB) to provide adequate service and care for persons with ID. Since then, more and more “MZEBs” have been established in Germany and with these services the interest of medical doctors, psychologists and therapists has been steadily increasing. Therefore, we are experiencing exciting times in the field of ID in Germany right now and I am expecting that the EAMHID congress in 2021 will further strengthen this development.

And to the second part of your question: At the Berlin treatment centre where I work, we are treating about 400 inpatients and 3500 outpatients with ID and mental disorders annually. Currently, we are founding a MZEB and I am confident that this will come into service at the beginning of next year. This will allow us to not only offer a specialized ID service for mental health problems, but for somatic diseases as well.

What do you believe to be the most important recent paper addressing “mental health in ID”?

For me, the paper of Francesca Happé and Uta Frith “Annual Research Review: Towards a developmental neuroscience of atypical social cognition” published 2013 in the Journal of Child Psychology and Psychiatry is ground-breaking as it integrates neurobiology and psychopathology in developmental disabilities.

In ID, our understanding of mental health and mental ill-health needs to be revised fundamentally. It is not sufficient to align treatment and support to the level of ID as ID is more than a “learning disability”. Besides the speed and complexity to learn, the whole mind-set and the therewith associated way of mental functioning differs. Critical is the process of developing Theory of Mind – how you see and think about yourself in the material world and in social relationships. Depending on the developmental stage of mentalization, different types of behaviours, but even more important, mental disorders arise. For example, typical developmental disorders such as ASD can be observed more often in persons with more severe ID while other disorders such as social phobia require the ability to look at yourself from “the outside” and therefore can only be seen in persons who already developed a Theory of Mind. Therefore, the diagnostic manuals for mental disorders in ID should be aligned according to the level of development.

Moreover, the treatment of mental and behavioural disorders needs to consider the level of mental functioning. “What works for whom?” is the critical question. For somebody with mild ID it may be sufficient to adapt treatment concepts which are well established for people without developmental disabilities, but for persons with severe to profound ID, training of the caring team and body and experience-oriented therapies are in the fore. Knowledge about the level of mental functioning gives an insight into the inner world of persons who may have difficulties to express themselves, their basic emotional needs, possible mental or behavioural disorders and which type of treatment may be successful.

The paper of Happé and Frith delivers the neuroanatomical basis for this approach.

What do you think should be in the agenda of EAMHID in the coming years and what are you planning to focus on during your presidency?

We want to support and foster participation from East, South-East and Central European countries. Currently, mostly persons from West, North and South-West Europe belong to our society and regularly visit the EAMHID conferences. However, Europe is far more and especially in East Europe, the Balkan and the Baltic countries, the public health care system for people with ID needs to be strengthened. Therefore, “Project East” is on the Agenda. For example, our next EAMHID board meeting will take place in Bucharest, Romania. On this occasion, we will hold a masterclass, visit local services and meet Romanian experts in the field of ID.

Moreover, I am planning a photo project to increase our knowledge and really see how people with ID live in this part of Europe. This may further support our activities to connect with the local professionals, increase the public awareness for our topic and strengthen the developing networks within whole Europe.

We also want to focus the work of the EAMHID around specific topic areas. I developed a concept for special interest groups (SIG) within the association to further support certain topics related to mental health in ID. The first SIG will be the “Network of Europeans on Emotional Development” (NEED), and I want to encourage everybody to think about the foundation of further SIGs, for example for aging, trauma etc.

And finally, can you tell us something about the plans for the conference in 2021 in Berlin?

Oh, I am really looking forward to this event and actually we are already very busy with the preparations! We found an excellent conference centre - right in the middle of Berlin - which has a long tradition for conveying science to the public, the Urania.

The congress theme will be “From Science to Practice”, and this idea will be realized in many different ways. For example, besides the typical structure of the abstracts in background, methods, results and conclusions, this additional element of “from Science to Practice” will be added. This theme should also be addressed in the oral and poster presentations during the congress and will be summarized in a booklet, to be published at the Congress, in easy language with comic illustrations from the artist who also designed the congress motto. We hereby aim to transfer new scientific findings to the daily lives of the people. Workshops not only before, but also during the scientific congress sessions will be another format to reach practitioners who convey the new approaches to the everyday lives of the people.

Moreover, an improvisational theatre group will attend the congress and interact with the participants in different ways – but I don’t want to give the game away at this point…

And finally, as I believe that in Germany we have to keep the memories alive of all those people with disabilities who did not survive the Nazi regime, at the very beginning of the congress we will hold a memorial service at the “Gedächtniskirche”, a landmark in Berlin for this period in German history. I am happy that Pastor Pohl, the chairman of the v. Bodelschwinghsche Stiftungen Bethel, the foundation which will organize the next EAMHID congress, has agreed to lead this service.

I am looking forward to welcoming you in Berlin 2021!