Innovative collaboration between persons with disabilities, parents, care institutions and the University of Groningen has added a new dimension to the quality of life of people with profound intellectual and multiple disabilities. ‘Quality of life is not a luxury; it is a basic human right.’One of the greatest challenges is to bring the current knowledge and expertise to the active attention of a wider public and to the Dutch politicians in particular.
This is the opinion of researchers Annette van der Putten, Petra Poppes and Leontien Bossink from the department of Special Needs Education and Youth Care at the University of Groningen. They are conducting research into people with profound intellectual and multiple disabilities and the possibilities of supporting to participate in society and optimize their health and well-being by aligning the environment to their personal possibilities and wishes.
Van der Putten, Poppes and Bossink are conducting research into people with profound intellectual and multiple disabilities and the possibilities of supporting to participate in society and optimize their health and well-being by aligning the environment to their personal possibilities and wishes.
Annette: ‘Identifying the things that people with profound intellectual and multiple disabilities enjoy, how they are feeling and what they need is an investment that benefits everyone. Our new scientific approach in Groningen improves people’s quality of life in a broader, more refined and practical way. It involves the person with disabilities but also the lives of those around them, the support professionals and most importantly, the parents. Quality of life is not a luxury; it is a basic human right.’
New technology is enabling carers, parents and clients to full-fill their full potential. Petra: ‘Using the app ‘Who am I’, for example, we can teach certain social skills. This detailed manual provides pointers for trainers and carers to get the best out of the training they can offer. Another technology is to fit a button to their wheelchairs, which makes wireless contact with a blender . If we put an apple into the blender, the client can puree it him/herself by pressing the on / off button, thus providing a functional tool.’
Annette: ‘The thing that makes our approach innovative is the way we have added methodical components to enhance the mainstream sensory approach. We focus primarily on body language and facial expressions, and then we observe how people respond to certain stimuli, including sensation. This information enables us to compile a personal education or support programme, explaining a personal portrait particularly tailored to this required type of action so to that person and for that moment in time.‘
Petra: ‘In my own practice, I was confronted with the problem of a woman with an intellectual and profound multiple disability who screamed a lot. The situation obviously had a serious impact on the woman herself, as well as on her direct surroundings, her carers and her parents. The natural reaction from the people close to clients like this is often one of acceptance: screaming is simply what she does as if it belonged to her. But this particular woman’s parents and carers asked me as a scientist to take a closer look at the situation and try to work out what was going on.
Together with her, her family, carers, therapists, doctors and a behavioural scientist, we used the per-sonal training programme developed in our department at the University of Groningen to work out exactly when the screaming occurred. We were very methodical : when, where and in which specific situations did the woman scream? We came to the conclusion that it was mainly a distressed an expression indicating in fact a reaction to under-stimulation and boredom. Once we had worked this out, we were able to devise an activity plan for the woman and her screaming diminished enormously. Everyone was delighted about this result and the incredible impact. Not in the least her parents, who felt that they had got their child back.’
Annette: ‘Actually this demonstrates that actively trying to carefully understand signals is what it is about instead of taking them for granted as if there is nothing you could do. The environment has to be enriched and tailored to the person’s needs. We provide tools for the environment helping them in this process of understanding and reflection. We look at the signals and the interpretations. We make our assumptions about our interpretations more explicit, test these and design a programme.’
Working on the basis of previous research, Annette van der Putten’s research group developed new methods and intervention programmes designed to generate new expertise and new forms of therapy and interventions. The involvement of parents at a great source of expertise is now very much acknowledged.
Annette: ‘In close collaboration with people working in the field, we conduct research into pain behaviour in clients, for example, and into the development and effectiveness of various interventions (including movement). Or we look into ways of creating a secure auditory environment for clients. We have various methods for analysing our new methods, such as observation and something known as ‘multi-sensory storytelling’. Multi-sensory storytelling involves reading a text, while providing the client with sensory stimuli that allow them to feel structure, for example, or hear a noise.’
Leontien: ‘For my research, I interview care teams working in the field to find out what they consider to be problem areas or points for improvement when caring for people with profound intellectual and multiple disabilities, particularly with regard to activating their motor functions. I ask practical ques-tions, such as: how can you encourage people to work with you when you help them get out of bed? It’s something we do every day, so we want to help people with disabilities to move and participate at their own pace as much as possible, giving them a greater say in their own situation. Protocols could be developed in the practical situation to enhance training programmes for the people providing the care.’
PhD student Jorien Luijkx is conducting research into parental satisfaction and family Quality of life. Leontien: ‘Very little is known about the impact a disabled child has on the day-to-day life of his or her parents and siblings.’ The results of her research will be available in the course of 2016.
Educating and supporting people with profound intellectual and multiple disabilities is a specific area for special attention in the department of Special Needs Education and Youth Care at the University of Groningen. The new method was devised by the researchers Han Nakken and Carla Vlaskamp, both from this University. The University has been providing teaching and organizing research in this field for more than twenty years, in which time many interventions and instruments have been designed. The expertise houses in the Research Centre for Profound and Multiple Disabilities within the University of Groningen. The researchers are doing important work, with a huge societal impact. In the Netherlands, some 15,000 children and adults have been diagnosed with a profound intellectual and multiple disability.
Leontien: ‘And the instruments we develop can also be used for other complex care situations, such as caring for people with moderate intellectual disabilities as they grow older and/or people with a profound intellectual disability and deaf - blindness.’
One of the greatest challenges today is to bring the current knowledge and expertise to the active attention of a wider public, and to persuade politicians to invest more money in new research. At present, most of the academic research being carried out is funded by the care institutions. The first concrete step into the open involves developing two digital platforms (websites) to attract public attention: a platform for the academic side, set up by the Research Centre for Profound and Multiple Disabilities, and a website initiated by the care institution ’s Heeren Loo, for the practical side. The second step is a personal ambition.
Petra: ‘As Carla Vlaskamp and Han Nakken having been saying for years : people with profound intellectual and multiple disabilities are entitled to education and have the right to participate in a living environment where they can develop their talents to the full, just like everyone else in this world. There’s still a lot of ground to make up in this respect. Exchanging information and improving support at every level is crucial so that knowledge bases intervention can be applied.’
Annette: ‘It’s my ambition to compile a photo book to showcase people with profound intellectual and multiple disabilities. I would call it quite simply: Profoundly unique.’
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