State of the Art
STEVEN DEGRIECK: The role of our internal senses in sensing, understanding and regulating our stress (BE)
What I stand for?
“Whatever diagnostic label a person has, it is also just someone trying to be happy”
Proprioception and interoception are two of our internal senses that play an important role in feeling our body and the bodily changes that happen throughout the day. Detecting those bodily changes is the foundation of what is called affect, which in itself is the foundation of sensing an emotion. In case of a sensory hypersensitivity or hyposensitivity this process might be disturbed. And thus, feeling and knowing that one might be stressed, which happens by the same process, will be difficult. And what you don’t feel, you can’t regulate. Often leading to ‘sudden’ and ‘explosive’ challenging behaviors.
Many people with autism and an intellectual disability are at risk of having an additional sensory problem. In our efforts to support them in dealing with stress we can work on two tracks. We can try to improve the sensory base, working directly in a better sensing what is happening in the body. But this involves some abstract notions and demands a certain level of language understanding. The other track offers the possibility to work directly on proprioceptive input. Either in an active way by proposing physical activities or in a passive way by providing deep pressure. These techniques are suitable for everyone, including people with a severe intellectual disability. They are easy to use in any context. Of course, the offered activities should be ‘autism friendly’, meaning they should be clear in their organization so that the exercises themselves are not a source of stress.
VANESSA OLIVIER-PIJPERS: Layers of the organizational environment in the care for people with intellectual disabilities and challenging behaviors (NL)
What I stand for?
“Those (professionally) involved within the care for people with intellectual disabilities and challenging behaviours need to operate as one collective. By doing this, it is possible to support people with intellectual disabilities in such a way that support services will contribute to a proper and meaningful life for the residents, and prevent challenging behaviours. Everyone involved in the disability service organisation has a part in providing better challenging behavior management; whether it is a very small or really big role does not matter. At every layer in de organizational environment there are possibilities to change the lives of people with intellectual disabilities and challenging behaviour. Hopefully, we can align these possibilities as this is necessary for quality of care.“
Challenging behaviors are the result of a resident interacting with his or her social context (other residents and staff), and in the broader context of the organizational environment of support services. Some organizational aspects (culture, leadership style, finances) have been linked to the management of challenging behaviors. The purpose of this study was to explore the relationship between aspects in multiple layers in the organizational environment and challenging behavior in residents, using Bronfenbrenner’s ecological theory.
We used a mixed-method approach. We first conducted a scoping review. Second, in a qualitative study we interviewed organization members (heads of groups, psychologists and managers) and residents and their representatives. Third, we conducted a quantitative study with a questionnaire by 922 respondents from 21 organizations. Fourth, we performed a multiple case study with two disability service organizations during a three years period.
Ecological theory helped to reveal different organizational environment aspects associated with challenging behaviors in residents, such as in the staff member – resident relation (e.g stability and emotionally bonding, staff’s ability to see a resident beyond their challenging behavior) and the relations between organization members (e.g. staff’s sense of safety, power and network in staff teams, positive work relations among staff). Aspects with regard to family members are also related (e.g. involving family members, awareness of the dependency on staff). Aspects in the broader organizational environment (e.g. practice leadership, working method, balance between control and trust, friendly physical and psychological environment) and society (e.g. restrictions by governmental relations, media attention of bad practices) were also associated with challenging behaviors. Lastly, the organizational environment changes over time, resulting in distance between employees, or boundaries between formal and informal caregivers.
This study showed that the use of ecological theory as a sensitizing framework helps to understand why residents with intellectual disabilities display challenging behaviors within the context of specialized disability service organizations. A holistic ecological perspective on the prevention and management of challenging behaviors is valuable and necessary for the provision of proper support services to residents with intellectual disabilities.
JANNELIEN WIELAND: Suicidal behaviour in people with intellectual disabilities (NL)
What I stand for?
“I stand up for excellent mental health care for people with intellectual disabilities.”
In people with intellectual disabilities (ID), suicidal behaviour is an important but underexposed topic. There are only a few studies that examine suicidality in persons with ID. Daily practice however shows that people with ID are both capable of forming intent for suicide and are able to act on this intent. Suicidality does occur and suicidal ideation may even be more common among persons with ID than in the general population. In order to meet this challenge in ID care, knowledge from both ID and mental health care and cooperation between the two is essential.
In this presentation we will explore the concept of suicidality and summarize the available research on suicidal behavior in people with ID. We will address important guidelines from mental health care on the subject of suicidal behaviour and talk about important lessons on diagnosis and treatment of suicidal behaviour learned from general mental health care and applied to people with ID.
ILONA AUTTI-RÄMÖ: Eyes closed, ears shut – the problem of not recognizing the magnitude of problems linked with prenatal alcohol exposure (FI)
What I stand for?
“Prevent the preventable.”
FASD is one of the most common neurodevelopmental disabilities yet far too little resources have been allocated to primary, secondary and tertiary prevention. In addition, diagnostic capacity continues to lag compared to other disabilities and without the diagnosis persons with FASD fail to receive the individual support needed.
In this presentation preventive interventions on all three levels will be presented. The targets of preventive interventions are identified using the COM-BE (capacity-opportunity-motivation in behaviour) model and the preventive strategies are based on the Behaviour Change Wheel.
In primary prevention universal and targeted information are emphasized. In secondary prevention the combination of individual capacity to understand the need for change, raising motivation and securing a supportive physical and social surrounding are needed. In tertiary prevention interventions need to be focused both on the family and the individual child and multiprofessional collaboration needs to be secured.
Prevention requires individual capacity to reach and receive information that is customized to individual situation starting from raising awareness to identifying capacity to change. To improve motivation both reflective methods and the role of emotions and outside triggers need to be analyzed. Facilitating and inhibiting factors in physical and social surrounding need to be identified and targeted in preventing strategies.
In many countries the current strategies focus primarily on pregnant women with identified high risk alcohol consumption – less on universal prevention and preventing the behavioral disturbances a child with FASD is not born with but which are due to difficult living surrounding and lack of individual support.
Preventive actions are needed on various levels ranging from individual to societal and political actions.
ELINA KONTU: The Relation of Communication as Window to Autism (ASD) (FI)
What I stand for?
“There is still a lot of work to be done for equal society be a reality, and everyone’s voices to be heard as they should be. Let’s do it together!”
Research knowledge on the autism spectrum (ASD) has increased in the last twenty years. Still, though, the ASD is shrouded in some sort of “foggy, veil of secrets.” As a phenomenon, the ASD is multidisciplinary; its biological basis is not yet fully known. Both genetic and neurobiological causes have been found, but the causes appear different depending on whether only people with a diagnosis of ASD have been studied or also those with an additional developmental disability diagnosis have been studied. Over the course of twenty years, the ASD has been explained and understood from the perspective of cognitive abnormalities. Key theories have included is Theory of Mind, Central Coherence Theory and Executive Theory.
Over the past few years, new theories explaining the ASD have been apparent. For example, according to the Double Empathy Theory, the failure to experience empathy is due to both interaction partners not the lack of interaction skills of a person with ASD. Focusing on the interaction allows for mutually satisfying interactions and releasing energy by not focusing on the interaction skills of either. A relation of communications is used to build a bridge across the double empathy.
MARIA ARVIO: X-chromosomal syndromes are the most common cause of intellectual disability among males (FI)
What I stand for?
“We can’t choose our genes and we all have the right to be born!”
Maria Arvio is a professor in intellectual disability medicine and child neurologist. She has worked in same area for over 40 years treating and following same patients. Her research publications contain several follow-up studies of rare diseases. She was board member in European Association of Intellectual Disability Medicine 2005-2010. Her scientific work is large in the field of intellectual disability, for example ageing, epileptic encelophaty and servicesystems.
Fragile X and Rett syndrome are the most common X-linked intellectual disability syndromes. Fragile X affects most often males and is often familiar. Whereas Rett syndrome almost always affects females with no relatives with this syndrome.
PEER VAN DER HELM: The crocodile, the horse and the rider. About self-regulation (NL)
Human (and children’s) rights combined with Ethics of Care (EOC) together constitute a beautiful but at the same time fragile construct for those who have a Mental Disability in present day society and in care. Perhaps recent brain research can give arguments for combining Human rights and EOC and provide us with practical guidelines for professional behavior.
TANJA SAPPOK: ICD-11: Impact on the conceptualization of mental disorders in intellectual disability
What I stand for?
“With my work I aim to improve medical care for people with intellectual developmental disabilities.”
In ICD-11, disorders of intellectual development (DID; code: 6A00; in ICD-10: intellectual disability F7) are listed as a subgroup of “neurodevelopmental disorders” (code: 6A0). Neurodevelopmental disorders also include autism spectrum disorders (ICD-11: 6A05), attention deficit hyperactivity disorder (ICD-11: 6A05), and stereotyped movement disorder. The diagnostic criteria for DID have been adapted compared to ICD-10. Moreover, the conceptualization and criteria for certain disorders such as catatonia, feeding or eating disorders, dissociative disorders, obsessive-compulsive disorders, and behavioural disorders have been changed compared to ICD-10. This may also impact our diagnostic assignement and consequently treatment and support. The lecture will present the changes and its possible impact for medical care in people with an intellectual disability.
JARMO KÖRKKÖ: Rare and common causes genetic analysis in people with ID (FI)
Presentation will combine the results from etiological and population studies and information collected from regional population (Northern OsthroBotnia, Finland). Intellectual disability is well characterized in our region, communities recognize the people with special needs and health care system performs thorough etiological and psychological studies. In this region both intellectual disability and psychiatric disorders are more common than in Finland in general probable caused by shared genetic inherintance. The study is still ongoing, more than 1200 patient with intellectual disability with unknown etiology has been recruited for genetic study.
PETER LANGDON: Advances in psychological Therapies (UK)
What I stand for?
“The rights and social inclusion of all people with intellectual disabilities.”
Psychological therapies for people with intellectual disabilities who have mental health problems are often adapted. These adaptations often appear idiosyncratic and whether they led to improved outcomes remains unclear. Within this keynote, the current state of the existing evidence regarding the effectiveness of talking psychological therapies for people with intellectual disabilities will be presented and critically discussed, along with some of the adaptions that are made by therapists. The next steps, needed by all of us, to address some of the challenges will be outlined and considered.
Meet the Expert
JYRKI PINOMAA: A family member’s view on support in service provision – importance of individually ensuring and maintaining mental well-being of a young adult with intellectual disability in housing services (FI)
What I stand for?
“People with intellectual disabilities enjoy equal rights and fully participate in all aspects of life and family members of people with intellectual disabilities can be just that – family members.”
This presentation will describe very pragmatically, based on the presenter’s and his family’s long experience, service provision practices in housing services and how the presenter’s two sons, Markus’ and Robin’s mental well-being has been affected by these practices.
What does mental well-being or mental nausea mean in a context connected to Markus or Robin? How do they show? What does their expressions of mental nausea look like, what to do about them and how not to ignore them? Ignorance is also a form of discrimination.
What do the family members and the staff members know about how Markus or Robin have earlier shown uncertainty, worry, concern. How is this knowledge in use to help their mental well-being.
Use of person-centered approach based on individual needs and the idea of personal staff teams and individualised service provision. Person centered versus personnel centered. The importance of one’s ecoculture in service provision.
Restriction practices and their effects during times of crisis based on the first months of COVID19 pandemic. Some experiences of families with children with intellectual disabilities during the breakout of the aggressions in Ukraine.
IRENE TUFFREY-WINE: Involving people with intellectual disabilities in end of life care planning: Why? And how? (UK)
What I stand for?
“I believe that everyone with an intellectual disability has a right to be valued in life, and to live fully for as long as possible. Everyone should then have access to excellent palliative and end of life care, whatever that might be. My research is about HOW to make this possible. The starting point is listening to people with intellectual disabilities and their families and carers – which is why I work with co-researchers, using inclusive methodologies.”
We all want to live long and healthy lives, but eventually, 100% of us will die. We cannot predict when, where or how we die, but to a certain extent, we can anticipate and plan for it. How to ensure that people can live and then die in the way they choose, has been an important question for health care (and especially palliative care) professionals. There are resources and guidance to help people with end of life care planning. It’s not easy, because talking about dying is not easy.
What if the person has intellectual disabilities? How we can help people with intellectual disabilities understand and cope with dying, death and bereavement has been my research topic for several decades. Too often, they are protected (and thereby excluded) from knowing about death.
People with intellectual disabilities face significant health inequalities and die younger than the general population. Their deaths are often unanticipated and unplanned for. People themselves are rarely involved in making decisions about their treatment and care at the end of life. There are many reasons for this (not least the difficulty we all have in talking about death).
In my keynote lecture, I will tell you about my current research study, the Victoria & Stuart Project. My university team of researchers (including four researchers with an intellectual disability) is working together with providers of intellectual disability services, families, health and social care professionals and other stakeholders, to co-design a toolkit of approaches and resources for end of life care planning that is welcomed by people with intellectual disabilities themselves, families, carers and professionals. We started by gathering existing materials and by listening to a wide range of people in focus groups. At the time of this lecture, the toolkit will be ready for trialling.
Our study is inspired by the stories of Victoria Willson and Stuart Hasler. Victoria had profound and multiple disabilities. „She know what she wanted,“ her mother said, „but she couldn’t speak, so it was up to us to listen and then tell others what she wanted“. Stuart knew he was going to die, and was able (with the help of a huge number of professionals) to articulate and write down his wishes.
At the time of writing this abstract, I cannot tell you what the Victoria & Stuart toolkit will look like. But it is already clear that one size does not fit all. „Involvement“ looks different for everyone, how we listen to people’s wishes is different for everyone, and what they want may surprise us. The story of people’s lives will (or should) affect the story of their dying. We only have one chance to get it right, and that is both a challenge and a privilege.
KATRINA SCIOR: Stigma, its impact on people with intellectual disabilities and best practice in reducing stigma (UK)
What I stand for?
“Developing robust methods to assess intellectual disability stigma and its impact, evidence based interventions to reduce stigma, human rights of people with disabilities, giving voice and supporting people with intellectual disabilities in leading against the fight against stigma.”
Recent decades have seen many positive changes in public attitudes and in increasing the inclusion of people with intellectual disabilities and their options for leading self-determined lives. Yet, all too often, children and adults with intellectual disabilities still face stigma, that is prejudice, negative stereotypes and discrimination. This talk will provide an overview how stigma affects the lives of people with intellectual disabilities before asking what courses of action are being taken to reduce stigma and what we know about their impact. Comparisons will be drawn with anti-stigma efforts in other fields, particularly the autism and mental health fields. The central question in Katrina’s talk will be whether we should continue using established models and campaigning efforts to reduce disability stigma or whether it is time for a fundamental shift, which positions people with intellectual disabilities not only at the centre but as the driving force in efforts to resist prejudice and discrimination.
MARCO BERTELLI: Mental Health and Intellectual Disabilities (IT)
What I stand for?
“The current classification systems of mental disorders pose several major issues for practice and research for people with intellectual disability (ID) and/or other neurodevelopmental disorders (NDD).”
The three following issues can be categorized as the primary ones:
– Difficulty in identifying the disorders, especially for people with greater communication and cognitive difficulties, in which the subjective symptoms, verbally described, are missing and can instead be expressed as alterations of the baseline behaviours or of the behaviours usually associated with the individual well-being, both qualitatively and quantitatively;
– Differential diagnosis errors, which may concern not only psychopathological co-occurrences but extend to the DNS themselves (for example, differentiating DI from autism and/or ADHD). Frequent mistakes concern problem behaviours (PB), which are treated as psychopathological without having excluded other causes through adequate procedures;
– uncertain amplitude of disorders. The application of the spectrum concept to DNS is undergoing a progressive extension, with particular reference to autism and ADHD, and runs the risk of including people with a profoundly different overall psychic condition from the one that defines these disorders, with proportionally distant prognostic and interventional implications. The impairment of functioning requires a re-evaluation in specifying the qualitative transition from normality to pathology.
The near future of mental health for people with DNS will have to grapple with the many issues of the current classification systems. Studying the behavioural equivalence of the different PB will be crucial, especially in light of the presence of other symptom clusters and the effectiveness of the various therapies. Finding the ideal balance between the dimensional and category diagnostic techniques might also be quite beneficial. These accomplishments would dramatically improve the diagnostic precision in the general population as well.
PETER CRONIN: A mental health service user and staff (UK)
My name is Peter and I have an intellectual disability for most of my life, I have suffered from time to time from anxiety and depression. In this talk, I want to talk about some of the projects I have been involved in to help my own and friend’s mental wellbeing. Today Eddie Chaplin will be supporting me.
I will share with you some of the projects that have promoted mental wellbeing I have been involved in as a campaigner and advocate. These include developing resources to help people learn about their own mental health and develop an understanding so that they can be more independent in managing their own mental health. I am a member of several self-advocacy groups and have helped develop manuals for clinicians to help people with intellectual disabilities. My latest project is the Peter and Friends books which I had the idea for. The first two have been on covid and mental health and are written by people with intellectual disabilities and those without.
In this talk, I will share my experiences and share strategies with the audience on what people can do to help them stay mentally well. I will also let people know some of the issues and barriers that upset people with intellectual disabilities in accessing healthcare and what we can do to create more choices and include people. I will also signpost the congress to several resources freely available they can use to help.
This talk offers valuable insights into how mental health is experienced by people with intellectual disabilities and how to use healthcare information to make appropriate health decisions and follow instructions that promote positive mental health. It also covers how and when to make reasonable adjustments for people with intellectual disabilities that ensure choice and inclusion
NICK BOURAS: Reflections challenges and perspectives of mental health for people with intellectual disabilities (UK)
What I stand for?
“Promoting with equality, dignity and respect dissent mental health for people with intellectual disabilities”
Since the 1960s, we have witnessed fundamental and sweeping changes for supporting people with intellectual disabilities (PWID), their families and carers. The closure of the institutions, the resettlement of the residents and the development and growth of community mental health care were among the most important social experiments of the last century. The implementation of the deinstitutionalisation programmes and the development of community care required in addition to policy plans, well organise service systems with knowledgeable and well trained personnel. That reality underpinned the development of the European Association of Mental Health in Intellectual Disabilities (EAMHID) which was formed over 30 years ago in 1992 with the inaugural International Congress in Amsterdam. The main aim was to foster an international collaboration of professionals, service users, families and carers to support PWID and mental health problems. The US based NADD was invited to be a main collaborator and to share expertise and experience. European Congresses followed in London, Berlin, Rome, Barcelona, Zagreb, Luxembourg etc to reach the current 14th Congress in Helsinki. Mental health provision for people with ID has been facing several challenges. These include uncritical adoption of the ‘social model’ of disability that downplays the significance of impairments in learning associated with ID. Policy not matching the reality of geographical disparity through fragmentation of local provision. Standards in community care vary. Marginalisation in mainstream employment services. A meta community approach is now necessary and will be outlined.