Speaker: pre-congress workshops

Bakken, Trine Lise

"I have been working with patients with ill mental health and intellectual disabilities for 25 years. I am especially concerned about the patients being involved in shared decision making and also taking part in reserach in this field. Over the last ten years, I have included patients and their families in research and as participants in book chapters."

Pre-Congress Workshop:

Mental health nursing for persons with intellectual disabilities. Behavioral equivalents, therapeutic communication and user participation

Interview with Trine Lise Bakken

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

Research on psychosocial interventions related to mental health issues in intellectual disability is still in it’s infancy. However, methods developed for the general population seem to work also for people with ID. Hence, more interventions should be adapted to people with ID.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?


The main topic for the presentation is how mental health nursing may be adapted for patients with ID. Results form four studies will be presented. One study found that certain ways of communication elicited more organised behaviour in severely disturbed patients with psychosis, intellectual disability, and autism. The same study confirmed clinical experience; that more experienced staff members communicate more effectively than not so experienced staff members. Another study found that behaviour equivalents to psychotic symptoms work in identification of psychosis in patients with ID. A third study examines ways of validating patients with ID in inpatient mental health settings. The last study presents results from a study on patient experiences of the ward atmosphere (same as emotional climate) in a specialised mental health inpatient unit for patients with ID.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

Outcomes of studies that I have previously participated in have clinical implications both regarding assessment and interventions in the field of mental health in ID. Especially in Norway and Scandinavia. In Scandinavia, there are few practitioners in this field, and the mental health services are still fragmented.
The study on behavioural equivalents published in 2007, has elicited book chapters in Scandinavia and has also been quoted in the DM-ID (chapter on psychosis). However, the use of behavioural equivalents is also important in mental health nursing for patients with ID and additional psychosis. These patients are known to display high symptom burden, especially in acute phases of the illness. The symptom burden may shift within days, even minutes. Hence, assessment of “here-and-now” symptom burden is crucial in mental health nursing.
Research including the patients may inform future mental health nursing in this field through the patients’ experiences of ward atmosphere when being admitted to inpatient treatment.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

I will still work on practitioner skills, both in mental health nursing, and in psychotherapy for patients with mental illness and additional ID.
In Norway, we have recently launched a National network on mental health in ID, firstly for professionals. Later on we will include users of the services.
Ward atmosphere (same as emotional climate) is important not only in mental health inpatient units, but also in community services. In order to conduct high quality research in this field, service users must be included, both regarding planning and conducting studies, and also when interpreting the results in light of the every-day life of the users.


THANK YOU
Claes, Lien

"I try to inspire and support parents, teachers, social wordkers, students to look differently to behaviour that is 'difficult to understand'."

Pre-Congress Workshop:

On mutual connections between trauma and brain in people with intellectual disabilities

Interview with Lien Claes and Trees Vangansbeke

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

We highly appreciate all efforts by EAMHID to promote and facilitate studies on mental health of persons with intellectual disabilities. While there is already a lot of research available that is conducted from an individualistic, medical-psychiatric discourse, hence focusing on individual problems and treatment models, research on the mutual and dynamic relations between mental health issues and the contexts in which people live, learn and work remains rather scarce. Also, the use of qualitative, narrative and participatory research methodologies is underrepresented. Finally, the transfer and implementation of scientific research findings in daily practice remains challenging. The practice-based evidence work of our team aims to respond to these gaps.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

Research and literature on trauma in people with intellectual disabilities is limited. However, both theory and practice indicate that, due to different risk factors, people with intellectual disabilities and their families have an increased risk of suffering from trauma. Nevertheless, the diversity of complaints linked to complex trauma leads to confusion in diagnostic imaging. Consequently, people with trauma may be diagnosed differently by several diagnosticians. Specific behaviours are rarely interpreted as being caused by a traumatic experience. We found out that such a fragmentary diagnostic image subsequently leads to ‘mis-tuned’ or ‘not-enough attuned’ care and support and maintains or even reinforces challenging behaviour and mental health issues. Trauma informed- or trauma sensitive care, both in families as in professional care and support systems, is essential in the treatment and prevention of further trauma.
Historically, trauma only had fatalistic connotations of hopelessness and lifelong harm. Indeed, complex trauma greatly impacts the architecture and chemical processes of the brain and the connected stress system. Many clients develop a permanent hypersensitivity of the stress system and a sustained vulnerability in terms of cognitive, emotional and relational development. But in the meanwhile also concepts of stabilization, recovery and post-traumatic growth are gaining more ground: development from wound to scar is possible. Stabilization practices by means of the body and the brains may provide a perspective for improvement.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

The importance of a broad, (not label-oriented but) action-oriented process of diagnostic imaging cannot be overestimated. A careful reconstruction of someone’s life course and life events is crucial in all of our diagnostic imaging: after all, mental health problems are rooted in a person’s historical and cultural context. In trauma sensitive care contexts, the ‘trauma reflex’ enters into all diagnostic work: not as an end point (diagnosis) but as a starting point in the attunement and alignment of care and support.
In social and (mental) health care trauma is associated with taboo and reluctance. For instance, the idea that ‘only therapists are well placed to address trauma.’ However, trauma informed care also happens outside the therapy room. It is our shared responsibility to make families and professionals in schools, work places and residential living units trauma sensitive. On the one hand this is possible by sharing concrete, approachable tools that help to regulate and stabilize. On the other hand, this is only possible when environments where reasoning is under pressure because of complex trauma are supported with shared and ongoing mentalization processes.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

From our view, further research should be performed on the effectiveness of EMDR for people with intellectual disabilities. Also, an in-depth, qualitative study of the different factors that make a context ‘trauma sensitive’ would be appropriate. In this respect we would like to maintain and strengthen the connection with Ghent University in terms of research, case studies and internships. Such a bridge between theory and practice is key to a better implementation of scientific findings in daily practices.


THANK YOU
De Neve, Leen

"I am interested in coaching and supporting professionals and family members in assessing and attuning the basic emotional needs of people with ID and mental health problems."

Pre-Congress Workshop:

Emotional development: from science to practice

Interview with Filip Morisse and Leen De Neve (Kopie)

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

- The connection between emotional development, mental health and quality of life.
- Further validation of instruments to assess emotional development.
- Basic emotional needs of clients: how to attune environment and expectations to respond that needs?
- Not the level of ID, but the level of ED is decisive for adaptive abilities on the one end and challenging behaviours on the other end of the spectrum. Thus, assessment of the level of ED is pivotal for person appropriate support and treatment strategies.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

Introduction of the model of ED and basic emotional needs and motivations.
Development, psychometric research and clinical use of 2 instruments to assess and screen emotional development: Scale for Emotional Development - Revised² (SED-R², Morisse & Došen, 2017) and Scale for Emotional Development –Short (SED-S, Sappok et al. 2016).
The relationship of ED and challenging behavior/adaptive behavior.
In the pre-course, we will not present statistical results, but we will do exercises with these instruments on a case-study with video-images.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

Both clinical practice and scientific research, show that treatment/support based on emotional development and basic emotional needs, induce less behavioral problems and enhance mental health and quality of life. At the same time, we see less restrictions of freedom and less use of un-indicated use of psychopharmacology.
This approach is a relational approach, that places sensitive responsiveness of support workers in the center. Training and coaching can help support workers and family to better understand certain behavior and learn to see it as ‘normal’ behavior for a particular emotional level.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

Research of specific profiles of emotional development (f. e. in certain comorbid disorders, in certain levels of ED…).
Research of the discrepancy between cognitive and emotional development and eventually the predictive value to mental health.
Research of the translation of assessment of ED towards support/treatment in the daily practice.
Development of ED appropriate therapies and approaches.


THANK YOU
Escalera, Carlos

"I work to increase sincerity, consistency and kindness in professional relationships."

Pre-Congress Workshop:

Dialogue Oriented Deescalation. Identify and decisively use the elements of escalation

Fabian, Regina

"I stand for Theatre as a social art form. Theatre offers people in different situations and phases of life the possibility to get in contact with themselves and others. Through theatre play I offer people a playful form of encounter in which they can experience their potential and express and share their own stories and experiences. "

Pre-Congress Workshop:

Improvisational theatre Intervention in people with intellectual disabilities and mental health problems

Interview with Regina Fabian

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

There are fields of mental health for people with intellectual disabilities which are lacking research. In the context of drama therapy for people with intellectual disabilities and mental health problems there are only few research and studies. However, there are no reports on improvisational theatre interventions in adults with intellectual disabilities and mental health problems.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

Our workshop presents a newly improvisational theater intervention to support people with intellectual disability and mental disorders. We developed a manualized treatment model for an improvisational theater intervention in people with intellectual disability and mental disorders to foster social interaction. Since 2014, two improvisational theatre groups were implemented for adults with mild to moderate ID and mental disorders in the outpatient clinic of the Berlin Treatment Center for Mental Health in Developmental Disabilities. In our study the feasibility and appropriateness of the improvisational theater therapy were assessed. Results show that the newly improvisational theater therapy offered every two weeks, is feasible. The average participation period was 19 months. Qualitative assessments suggest that the applied methods and the structured treatment was well received and is appropriate for people with intellectual disability and mental disorders. We were positively surprised that the improvisational theater methods seem to give participants with a wide range of cognitive and socioemotional abilities confidence and activate and enable them in improvising social situations with others.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

Our study focused on a new improvisational theater based intervention in people with intellectual disabilities and mental health problems. The newly developed intervention focusing on social interaction expands the range of treatment in the field of art therapy for people with intellectual disabilities and mental health problems. A wide range of treatments enables to choose specific treatments for different needs of people with different abilities and mental health problems. Also, drama therapists could be encouraged to implement improvisational theater therapy as a group therapy for people with developmental disabilities.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

Topics for further studies could focus the treatment effects of an improvisational theater therapy on social competences, self-confidence and emotional expression. One of my wishes is a joint study with other drama therapists on the experiences of treatments with various theater methods for people with developmental disabilities.


THANK YOU
Morisse, Filip

"I am committed to promote mental health in persons with ID, by attuning the environment."

Pre-Congress Workshop:

Emotional development: from science to practice

Interview with Filip Morisse and Leen De Neve

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

- The connection between emotional development, mental health and quality of life.
- Further validation of instruments to assess emotional development.
- Basic emotional needs of clients: how to attune environment and expectations to respond that needs?
- Not the level of ID, but the level of ED is decisive for adaptive abilities on the one end and challenging behaviours on the other end of the spectrum. Thus, assessment of the level of ED is pivotal for person appropriate support and treatment strategies.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

Introduction of the model of ED and basic emotional needs and motivations.
Development, psychometric research and clinical use of 2 instruments to assess and screen emotional development: Scale for Emotional Development - Revised² (SED-R², Morisse & Došen, 2017) and Scale for Emotional Development –Short (SED-S, Sappok et al. 2016).
The relationship of ED and challenging behavior/adaptive behavior.
In the pre-course, we will not present statistical results, but we will do exercises with these instruments on a case-study with video-images.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

Both clinical practice and scientific research, show that treatment/support based on emotional development and basic emotional needs, induce less behavioral problems and enhance mental health and quality of life. At the same time, we see less restrictions of freedom and less use of un-indicated use of psychopharmacology.
This approach is a relational approach, that places sensitive responsiveness of support workers in the center. Training and coaching can help support workers and family to better understand certain behavior and learn to see it as ‘normal’ behavior for a particular emotional level.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

Research of specific profiles of emotional development (f. e. in certain comorbid disorders, in certain levels of ED…).
Research of the discrepancy between cognitive and emotional development and eventually the predictive value to mental health.
Research of the translation of assessment of ED towards support/treatment in the daily practice.
Development of ED appropriate therapies and approaches.


THANK YOU
Müller, Sandra Verena

"I take an interest in community participation, occupational rehabilitation and cultural participation."

Pre-Congress Workshop:

Dementia in Persons with Intellectual Disability

Interview with Sandra Müller and Elisabeth Zeilinger

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

Research on mental health for persons with ID are almost always about mental disorder. Can persons with ID be mentally healthy? If they can be mentally healthy, what constitutes their mental health?

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

We will focus on dementia in persons with ID. We will discuss how the presentation and diagnosis of dementia differ between people with and without ID. Persons with ID and dementia, as well as their caregivers, need special support, dealing with the new situation and with changes related to dementia. We highlight the importance of an early recognition of dementia in persons with ID and of a person-centred approach in caring for the person affected. It is surprising to recognize, that small efforts in everyday life, e.g. slight changes in the surroundings in order to give the person with dementia more security and orientation, can have large effects.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

We will raise awareness of early symptoms of dementia and how to recognise them. We will provide information on how to support persons with ID and dementia in their everyday life. We will discuss how living environment and day structure could be adapted to current needs of ageing persons with ID to ensure a high quality of life and independence for as long as possible. Furthermore, we will highlight ways to maintain active participation in community live with best-practice examples.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

Future topic could be to implement adequate regularly screenings to detect early symptoms of dementia; or to explore the living experience of persons with ID and dementia, their relatives and carers. The dementia test for people with intellectual impairment will soon be published in German "Demenztest für Menschen mit Intelligenzminderung (DTIM)" by Hogrefe Verlag.
To better implement scientific findings in daily practice, thorough dissemination frameworks should be applied (and financed). Scientific knowledge needs to be communicated to policy and practice with no time delay. Dissemination should be an integral part of every research project.


THANK YOU
Sanchez Calvo, Paula

"I work to increase sincerity, consistency and kindness in professional relationships."

Pre-Congress Workshop:

Dialogue Oriented Deescalation. Identify and decisively use the elements of escalation

Schuler, Miriam

"I stand for improvement of diagnostics and development of therapeutic concepts for people with sexual interest in the child's body schema and intellectual disability."

Pre-Congress Workshop:

Primary prevention of child sexual abuse by juveniles and adults with sexual interest in pre- and/or early pubescent children

Interview with Miriam Schuler

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

There are only few studies targeting intellectual disabilities, sexual preferences and sexual behaviours. However, sexual offending behavior is more often observed among individuals with intellectual disabilities (ID) compared to individuals without ID. Therefore, sexuality among individuals with ID have to be paid more (scientific) attention; not merely to prevent sexual abuse but also to meet sexual needs of individuals with ID.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

The “Prevention Project Dunkelfeld” (PPD) and the Prevention project "Just dreaming of them" (PPJ) offer clinical diagnostics and therapeutic treatment for individuals with sexual interest in pre- and/or early pubescent children. The workshop will focus on the projects in their work with adolescents and adults with ID. Additional to the diagnostic procedure and therapeutic program, difficulties and challenges will be presented.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

Individuals with ID are more likely in contact with judicial authorities due to sexual offending behavior compared with the general population. Sexual preference peculiarities can be observed among persons with ID, as well. Especially sexual interest in children and offense supportive cognitions are major risk factors for committing sexual abuse. Therefore, an extensive assessment is indispensable with individuals with ID and history of sexual offending behavior. However, diagnostic procedure requires more time and patience and is limited due to impaired communication skills and introspection. Furthermore, persons with ID and history of sexual offending behavior require an intensive therapeutic care, which is characterized by small steps, several repetitions and the integration of relatives and other significant persons.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

There are still a number of open questions regarding (child) sexual abuse in persons with ID. Regarding diagnostics, we need to focus on methods that are adapted to the reality of persons with ID. In order to improve treatment options, it is necessary to study risk and protective factors for offending behavior more thoroughly. The same accounts for treatment setting and accessibility of persons with ID.


THANK YOU
Tarasova, Daria

"I accompanied Mrs. Fabian's theatre therapy group for 1.5 years and would report on my perspective as an observer. "

Pre-Congress Workshop:

Improvisational theatre Intervention in people with intellectual disabilities and mental health problems

Interview with Daria Tarasova

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

I am new to research – and find it very inspiring to see all the passion and effort put by persons of various professions into understanding mental health problems in persons with ID. Also, I have no doubt that this research area will grow as our society becomes more and more humane and fair.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

As a research assistant at KEH (Berlin), I was involved in Ms Fabian´s project investigating feasibility and appropriateness of improvisational theatre intervention in people with ID and mental health problems. Overall, we received quite positive feedback from the participants, improvisation exercises being of the most appealing methods.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

It appears that there is not much evidence regarding use of theatre therapy for persons with ID. However, the approach appears to be promising and quite well-received by patients. Hopefully, our project will help to set the ground for further research and for wider use of theatre therapy in practice. Not being a therapist myself, I cannot really comment on the study´s effect in daily practice. However, it was a great experience. I greatly enjoyed participating in the group as well as collecting the patient´s feedback about the therapy sessions. I also believe that this feedback was very valuable for validation and further development of the method


THANK YOU
Vangansbeke, Trees

Pre-Congress Workshop:

On mutual connections between trauma and brain in people with intellectual disabilities

Interview with Lien Claes and Trees Vangansbeke

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

We highly appreciate all efforts by EAMHID to promote and facilitate studies on mental health of persons with intellectual disabilities. While there is already a lot of research available that is conducted from an individualistic, medical-psychiatric discourse, hence focusing on individual problems and treatment models, research on the mutual and dynamic relations between mental health issues and the contexts in which people live, learn and work remains rather scarce. Also, the use of qualitative, narrative and participatory research methodologies is underrepresented. Finally, the transfer and implementation of scientific research findings in daily practice remains challenging. The practice-based evidence work of our team aims to respond to these gaps.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

Research and literature on trauma in people with intellectual disabilities is limited. However, both theory and practice indicate that, due to different risk factors, people with intellectual disabilities and their families have an increased risk of suffering from trauma. Nevertheless, the diversity of complaints linked to complex trauma leads to confusion in diagnostic imaging. Consequently, people with trauma may be diagnosed differently by several diagnosticians. Specific behaviours are rarely interpreted as being caused by a traumatic experience. We found out that such a fragmentary diagnostic image subsequently leads to ‘mis-tuned’ or ‘not-enough attuned’ care and support and maintains or even reinforces challenging behaviour and mental health issues. Trauma informed- or trauma sensitive care, both in families as in professional care and support systems, is essential in the treatment and prevention of further trauma.
Historically, trauma only had fatalistic connotations of hopelessness and lifelong harm. Indeed, complex trauma greatly impacts the architecture and chemical processes of the brain and the connected stress system. Many clients develop a permanent hypersensitivity of the stress system and a sustained vulnerability in terms of cognitive, emotional and relational development. But in the meanwhile also concepts of stabilization, recovery and post-traumatic growth are gaining more ground: development from wound to scar is possible. Stabilization practices by means of the body and the brains may provide a perspective for improvement.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

The importance of a broad, (not label-oriented but) action-oriented process of diagnostic imaging cannot be overestimated. A careful reconstruction of someone’s life course and life events is crucial in all of our diagnostic imaging: after all, mental health problems are rooted in a person’s historical and cultural context. In trauma sensitive care contexts, the ‘trauma reflex’ enters into all diagnostic work: not as an end point (diagnosis) but as a starting point in the attunement and alignment of care and support.
In social and (mental) health care trauma is associated with taboo and reluctance. For instance, the idea that ‘only therapists are well placed to address trauma.’ However, trauma informed care also happens outside the therapy room. It is our shared responsibility to make families and professionals in schools, work places and residential living units trauma sensitive. On the one hand this is possible by sharing concrete, approachable tools that help to regulate and stabilize. On the other hand, this is only possible when environments where reasoning is under pressure because of complex trauma are supported with shared and ongoing mentalization processes.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

From our view, further research should be performed on the effectiveness of EMDR for people with intellectual disabilities. Also, an in-depth, qualitative study of the different factors that make a context ‘trauma sensitive’ would be appropriate. In this respect we would like to maintain and strengthen the connection with Ghent University in terms of research, case studies and internships. Such a bridge between theory and practice is key to a better implementation of scientific findings in daily practices.


THANK YOU
Vermeulen, Peter
Peter Vermeulen, PhD

"More the 30 years of experience in the autism taught me that autistic brains are very different and special, but that the people with an autistic brain have the same needs as every other human being. So, let's accept and acknowledge neurodiversity, but try to connect so we can create a world where different brains live in harmony: neuroharmony."

Pre-Congress Workshop:

Autism: absolute thinking in a relative world. Context blindness 2.0

Interview with Peter Vermeulen

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

That we should take a U-turn in our approach: from focusing on the lack of well-being in people with intellectual disabilities, resulting in a.o. challenging behaviour, to focusing on the promotion of well-being.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

I am not working at a University, nor doing research, so I cannot answer. What I do is translating scientific research into practical guidelines for professionals and parents.I am not working at a University, nor doing research, so I cannot answer. What I do is translating scientific research into practical guidelines for professionals and parents.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

What I will argue for is:
a) To understand the way people with autism and intellectual disability is a prerequisite for supporting them. We should look beyond the (challenging) behaviour and understand that when you are context blind, the world with its ever changing meanings can be quite stressful and fearful, leading to all kind of stress behaviours, a.o. challenging behaviours. Contextual sensitivity lets the brain predict the world. If a brain is context blind, the world becomes very unpredictable. That is why offering predictability is strategy number one in autism friendliness.
b) We should focus more on well-being and happiness in our daily care. Daily practice can improve when professionals know about the evidence based strategies that improve a person’s well-being. There are two aspects of happiness: the hedonic and the eudaimonic. Most professionals focus primarily on the hedonic aspects (creating pleasure, joy, safety for their clients), but it is a challenge to create opportunities to enhance the eudaimonic aspects of happiness in people with intellectual disabilities (and autism). How can we make their life more purposeful and fulfilling?

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

I would like to see more research studying how we can work on the eudaimonic aspects of happiness in people with an intellectual disability


THANK YOU
Zeilinger, Elisabeth

"I take an interest in inclusive mental health."

Pre-Congress Workshop:

Dementia in Persons with Intellectual Disability

Interview with Sandra Müller and Elisabeth Zeilinger

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

Research on mental health for persons with ID are almost always about mental disorder. Can persons with ID be mentally healthy? If they can be mentally healthy, what constitutes their mental health?

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

We will focus on dementia in persons with ID. We will discuss how the presentation and diagnosis of dementia differ between people with and without ID. Persons with ID and dementia, as well as their caregivers, need special support, dealing with the new situation and with changes related to dementia. We highlight the importance of an early recognition of dementia in persons with ID and of a person-centred approach in caring for the person affected. It is surprising to recognize, that small efforts in everyday life, e.g. slight changes in the surroundings in order to give the person with dementia more security and orientation, can have large effects.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

We will raise awareness of early symptoms of dementia and how to recognise them. We will provide information on how to support persons with ID and dementia in their everyday life. We will discuss how living environment and day structure could be adapted to current needs of ageing persons with ID to ensure a high quality of life and independence for as long as possible. Furthermore, we will highlight ways to maintain active participation in community live with best-practice examples.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

Future topic could be to implement adequate regularly screenings to detect early symptoms of dementia; or to explore the living experience of persons with ID and dementia, their relatives and carers. The dementia test for people with intellectual impairment will soon be published in German "Demenztest für Menschen mit Intelligenzminderung (DTIM)" by Hogrefe Verlag.
To better implement scientific findings in daily practice, thorough dissemination frameworks should be applied (and financed). Scientific knowledge needs to be communicated to policy and practice with no time delay. Dissemination should be an integral part of every research project.


THANK YOU

Speaker

Bertelli, Marco

"I am interested in  psychopathology, quality of life and nosology of autism spectrum disorders and intellectual developmental disorders."

Keynote:

New insights on psychopathological assessement in persons with intellectual disability and low-functioning autism spectrum disorder

Meet the Expert:

Psychotropic drug use in intellectual disability and low-functioning autism spectrum disorder: who, what, when, how, and why

Cook, Tina

"Tina Cook is Professor of Education in the School of Liberal Arts, Education and Social Sciences at Liverpool Hope University, UK. At the core of her work is a focus in on developing democratic approaches for research and professional practice. She works predominantly with people who find themselves marginalised, in particular people with learning disability, people with cognitive impairment and family carers. Using qualitative research, particularly collaborative/participatory action research, her work centres on ways of fore-fronting voices of those directly involved in a situation as a means of improving the quality of their lives or work.

She is a Director/Trustee of the Lawnmowers Independent Theatre Company, a company led by and for people with learning disability and a former Director and now long-standing member of the Advisory Council for Inclusion North, a not-for-profit organisation that supports the process of making inclusion happen for people with learning disability and their families."

State of the Art:

Building resilience: researching the practice of Mindfulness and Acceptance and Commitment Therapy with family carers of adults with learning disability and challenging behaviour

Interview with Tina Cook

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

What comes to mind for me when seeing these key words is firstly, ‘what’s in a word? These words all hold the potential for ‘illusory consensus’ ie we can each attach meaning to the word or phrase and believe that others attach the same meaning. In the belief that we all understand each other, we go on to act in different ways. Naming is merely a convention; it does not define the properties of the word, and building on non-contested words can confuse rather than clarify.
Secondly, all these words have meanings that can be limiting if that meaning is not unravelled, and indeed not contested. For instance, long held perceptions of what it means to do research, and how to judge the quality of research, can limit more diverse forms of enquiry that use different approaches to finding out. This is especially so if those approaches appear to challenge traditional quality frameworks. One example might be that in experimental research it is generally considered important to remain distant from those who are part of the experiment, but in participatory research it is considered important to build a relationship with those whose lives and/or work are central to the topic being researched.
The word ‘disability’, as in intellectual disability, is contested. Many of the people I work with consider it portrays them as fixed, unable to engage in complex thinking, or to learn how to. They prefer to use the word ‘difficulties’ because, as they say, difficulties can be overcome. The unravelling of this word offers an indication of how it has been understood. It is important that The words and phrases above are unravelled for use rather than used as a shorthand that has not been well understood. Without such exploration the phrase ‘challenging behaviour’ for instance, can lend itself to a normative framework that places the ‘problem’ with the person whose behaviour is disruptive of the ways of others. It can lead unilaterally to an expectation that it is the person who displayed the behaviour that needs to change rather taking a holistic approach where all need to consider ways of change.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

The main theme of this presentation is the power of agency in research and the effect of agency on the impact of research. It offers insights into how the co-labouring processes inherent in participatory health research can:
i) develop powerful trajectories to complex understanding and meaning making
ii) act as change mechanisms creating the conditions for direct and meaningful impact
iii) create change, not merely at the end of the project but embedded throughout. that goes beyond delivering expected outcomes.

The study had two main results, the first on the lives of family carers. It demonstrated how Mindfulness and ACT had the potential to positively affect the resilience of family carers in the face of behaviour that challenged their lives. This had an additional ripple, and reciprocal, effect on the lives of their family members, both people with and without learning difficulties. When family carers changed their behaviours so did their family members.

The second result, the ripple effect, was not an espoused aim of the study, and in that sense it was a surprise to see changes in long-standing behaviours that created challenges for families. Another surprise was how the conversations initiated by family carers had a major impact on how facilitators understood their practice. Key to enabling family carers to change their own behaviours was that the people facilitating the course (the psychologists) changed theirs.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

This study did not focus on the person with learning difficulties/disability, but on the resilience of family carers. To do this it brought psychologists and family carers together to engage in critical enquiry through participatory research. Within that research milieu those who took part in co-labouring together established their own ways for changing their behaviours rather than being asked to apply a prescribed change. This self-created change in behaviour had ripple effects. The change in family carer behaviour was seen, in many cases, to have a positive effect on the person they cared for, in some cases leading to reductions in long-standing, dangerous behaviours that had limited family life for all.
Change in facilitator (psychologist) behaviour was seen to create spaces for family carers to determine their own changes that were effective in their family spaces. Insight into how facilitator behavioural change occurred and how this effected the ability of family carers to change their own behaviours has been taken into wider practice. It has been rolled out through daily practice of the psychologists involved in the study in a large Mental Health NHS Foundation Trust and a community based programme of Positive Behaviour Support in the North East of England.

Important results professionals should know about to help develop their practice when working with families with long term caring responsibilities include:
i) professionals/practitioners need to consider the impact of ‘give’ in ‘give and take’ and reducing the giving and increase the taking
ii) become invisible facilitators
iii) recognise the depth of their own knowledge, their own professionalism, but wear it lightly.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

I will be making methodological contributions to a study intending to use participatory approaches to understand, make meaning of, and develop, the use of Formulation with mental health services across a large NHS Mental Health Foundation Trust in the North East of England.

I seek to work alongside, and with, the seldom heard, particularly those whose voices have not only been ignored, but have been dismissed as, at best, subjective. I am always humbled, amazed and surprised by the capacity for critical thinking and the depth of knowledge that emerges from working together, and the joy that occurs from truly co-labouring and revealing new ways of thinking and acting. Co-labouring is a powerful catalyst for change that can be lost if we perpetuate systems of hierarchical knowledge that do not connect to the daily realities of those whose lives and work are at the heart of the research.

Enabling enquiry as a shared process, where agency is not merely systems led but afforded to those whose lived experience, will contribute to the development and application of new knowledge. It is a powerful means for implementing what is being learnt through research.


THANK YOU
Ellingsen, Karl Elling

"I stand for equallity, inclution, participation and human rights."

Meet the Expert:

Life of Norwegians with IDD: status regarding key factors important to QOL

Farr, Jeanne

Meet the Expert:

Lessons from a Global Pandemic: What Have we Learned?

Fellinger, Johannes

"I am committed to unlock the potential of deaf people with intellectual disabilities."

State of the Art:

Mental health of deaf people with intellectual disabilities

Hinkelmann, Kim

State of the Art:

Biology of dissociation: current findings from stress research

Hodes, Marja W.

"Becoming a parent is one of the most intense transitions in a person's life and seen as a highly regarded social role. Persons with intellectual disabilities make this important transition as well. The United Nation Convention of the rights for persons with disabilities (2006) affirm the rights of people with intellectual disabilities to start a family and calls for appriopriate assistance to persons with intellectual disabilities in the performance of their child-rearing responsibilities. Several studies underpin that parents with intellectual disabilities are able to learn parenting skills and can improve parenting behaviour. It is our duty to support families headed by parents with intellectual disabilties with the best (evidence based) interventions and programs to create good conditions for the development of their children and a good family quality of life, with a basic attitude of respect for the parents themselves."

Meet the Expert:

Parents with intellectual disabilities: (evidenced based) intervention programs, best practices and parents' stories

Oliver, Chris

"The most pressing challenge is the rapid translation of research findings into effective intervention."

Keynote:

Enhancing the wellbeing of people with severe intellectual disability and complex needs

Preißmann, Christine
Dr. Christine Preißmann

Keynote:

living with autism - an encouragement

Interview with Christine Preißmann

Mrs. Preißmann, it was not until you were an adult that you were recognized as being in the autism spectrum. What was the meaning of this realization for you and how did it affect your life?

This was a great relief, a liberation, to finally have an explanation for one's own peculiarities. And only then can one try to adapt life as well as possible to one's own conditions and look for suitable solutions. Since then I have been working with a psychotherapist, to whom I owe a lot, and for ten years I have also been working with an occupational therapist. With this support I am currently coping well and can now have a nice and happy life, a life that suits me.

How can a good life be achieved for people on the autism spectrum? What do people on the autism spectrum need to succeed?

Above all, they need understanding and people who can help them to put together the right support for themselves. This can be of very different kinds: psycho-, occupational-, autism specific therapy, self-help, assistance for school, work and leisure, in crisis situations etc.
This is one of the challenges for all those who work with autistic people: to recognize that it is very different approaches to help the single person affected. The individuality of people with autism must be taken into account much more than it has been so far.

How can caregivers and relatives support people on the autism spectrum to live a good, happy life?

By trying to support the resources and strengths and to find help for the existing difficulties.
In almost every case, good structures, routines and rituals that provide security are especially important, but also clear, unambiguous communication, predictability, trust and acceptance. If one cannot understand a particular behavior, one should ask questions instead of condemning. Autistic people are not evil, and challenging behavior is often based on misunderstanding. The fact that it is not provocation that determines the actions of autistic people is a very important insight for a better coexistence.

What do you wish for people in the autism spectrum in the future? Do you have concrete suggestions for improving the mental health of people on the autism spectrum?

In my autism consultation, I see many people in a completely desolate situation, without any hope for any perspective - and with the realization that relatives, employment agencies etc. have long since given up on them. Many are fobbed off with the sentence "There is no help for you". This is horrible and would probably make every person despair in frustration. But: No one is a hopeless case! On the other hand, I also experience many patients who, with good support, have been able to improve a lot for themselves and report that they are now happy for the first time in their lives. To experience this means happiness for me as well. And also, the realization that a happy life can often be made possible with very small measures. It is also important to convey this to therapists, doctors etc. and to take away their fear of working with autistic people.
I myself currently offer seminars for doctors and therapists to inform them about people in the autism spectrum, and I have made the experience that many of them are grateful to learn about it in order to be able to help these people better - on an outpatient basis as well as in hospitals.


THANK YOU
Seidel, Michael

"I stand for human rights for people with disabilities"

Historical Lecture:

The extinction of people with mental and physical disabilities by German physicians during the Nazi time

Strüber, Nicole

"I am committed to ensuring that in the various childhood environments, from crèche to foster family, and the treatment of children aged 0 - 3 years are guided by the requirements of developing a healthy psyche and does not primarily follow parental interests."

Keynote:

Focus on the brain: How individual genes, prenatal epigenetic characteristics and early interaction experiences shape resilience and risk.

Interview with Nicole Strüber

Research, intellectual disabilities and mental health (or challenging behaviour). What comes into mind reading these key words?

Research on mental health issues is important for all of us. Focus on the brain. The individual setting of neuromodulatory substances in our brain influences how we process stress, i.e. how we deal with high demands, how well we can relax in the company of others and many other aspects of our personality and hereby our mental health. Their individual functioning is in turn influenced by genes, by prenatal stress and early childhood interpersonal experiences. All this applies to all people, whether they have intellectual impairments or not. However, the negative impact of these deeply rooted difficulties in stress processing and attachment on our mental health might be even greater if accompanied by an impairment to put our problems into words, to communicate and thereby receive social support.

What is your main research objective/theme/focus of the study you will be presenting? What are the main results from your study? Can you give some examples of topics or outcomes which have (positively or negatively) surprised you?

We have long known that early experiences have a lasting effect on mental health. Early experiences of secure attachment form the basis for later mental health, whereas early experiences of physical or emotional neglect, of abuse or abandonment increase the risk of mental illness. Today, we know that one of the ways in which these experiences have a long-term effect on people, is through epigenetic labelling of genes of different neuromodulatory substance systems in the brain: cortisol, oxytocin, serotonin and many others. Changing epigenetic signatures, prenatal or early childhood stress experiences can have a long-term influence on the function of the cortisol stress system and hereby on how we deal with high demands. Early attachment experiences in turn shape the oxytocin attachment system in the long term and in this way our motivation and ability to form and maintain secure attachment relationships. From a neurobiological point of view, it is not precluded that these epigenetic signatures are reversible, for example when a person’s personality can mature in later attachment relationships. Nevertheless, the effects on mental health are sometimes persistent. Here, vicious circles may come into place. If people after early adverse experiences develop a dysfunctional stress system, it might hinder their ability to use social support as a resource and thereby recovery of underlying biological stress physiology.

How might outcomes of your (previous) studies affect daily practice in the support of persons with ID and mental health disorders and/or challenging behaviour? How can daily care improve their support based on your study/work?

The assumption that mental problems are rooted in inadequately functioning biological systems implies that these problems cannot be solved by an appeal to insight or reason. Instead, new positive mental experiences must be practiced in close relationships, therapeutic or else. Especially when people have problems accepting psychological support after early stress experiences, perhaps because their cortisol stress system overreacts or because their oxytocin system and thus the motivation to form interpersonal bonds has shut down, then physical closeness and touch can have a positive influence on mental health through stimulation of the oxytocin system. All this also applies, of course, when intellectual impairments hinder a person to reflect on their own behaviour and state of mind in a differentiated way.

Can you suggest topics for future studies you will be working on? With whom would you like to do a study in the future? And why? How can we better implement scientific findings in daily practices?

I consider research into the reversibility of the effects of early stress experiences to be very important. What significance does touch have for the development of the stress system? Can, for example, increased irritability of prenatally stressed children be prevented by baby massage? Can massages of pregnant women prevent the stress load from being passed on from mother to child via a calming influence on the maternal stress system?


THANK YOU
Strydom, Andre

"I am particularly interested in ageing-related conditions such as dementia in adults with Intellectual Disability and Down syndrome. I am the chief investigator of the LonDownS consortium which consists of several research groups from prominent London universities (KCL, UCL, QMUoL, Birkbeck and the Crick Institute) collaborating on various aspects of  Alzheimer’s disease in Down syndrome. One of the important aims of the consortium is to deliver the knowledge, tools and expertise that is necessary to enable clinical trials of treatment to prevent or delay the onset of dementia in individuals with Down syndrome."

Keynote:

Alzheimer’s disease in Down syndrome - from understanding pathology to prevention

Vermeulen, Peter
Peter Vermeulen, PhD

"More the 30 years of experience in the autism taught me that autistic brains are very different and special, but that the people with an autistic brain have the same needs as every other human being. So, let's accept and acknowledge neurodiversity, but try to connect so we can create a world where different brains live in harmony: neuroharmony."

Keynote:

From neurodiversity to neuroharmony: intellectual disability, autism and happiness