This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
It is estimated that visual and severe or profound intellectual disabilities affect 10,000 to 15,000 adults in the Netherlands, which is approximately 0.05-0.08% of the Dutch population. These adults have an intelligence quotient of less than 35 points, and their visual acuity is less than 6/18. Comorbidity is very common in these adults, i.e., they often experience other physical impairments, sensory impairments, or medical problems.People with severe or profound intellectual disabilities and visual impairment (MDVI) encounter numerous physical health problems simultaneously. In addition, they have lower physical activity and physical fitness levels compared to the general population. As a consequence, their ability to perform activities of daily living is decreased. Last but not least, persons with MDVI appear to be at risk of decreased participation. Royal Dutch Visio and the Hanze University closely collaborate with the Research Centre on Profound Intellectual and Multiple Disability of the Rijksuniversiteit Groningen to perform research in persons with MDVI. In this symposium, their research and that of international research groups will be presented concerning the following topics: participation, physical health problems, optometric issues, motor activation, and measuring muscle strength of persons
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
The central aim of this project is to increase the participation of people (all ages) with severe multiple disabilities (PIMD) in the field of sport, exercise and physical activity, by expanding the number of coaches and organizations who offer a Motor Activity Training Program in a professional and custom way. This aim will be achieved by the following activities:- Creating a more appropriate and varied offer of sport, exercise, and physical activity to increase the choice of the PIMD target group. - To develop a curriculum for MATP Coaches and Trainers (PE Teachers, Physical Therapists, etc). - To implement, test and contextualize a PIMD offer in 3 EU countries, this will be done with local stakeholders. - Strengthening the connection between sport, education and health care organizations to enable participation of the PIMD people in the field of sport, exercise, and physical activity. - Consortium members create a European network and exchange knowledge, including through best practices
INCLAVI will address the skills mismatches that exist in the aviation sector related to the freedom of movement of persons with disabilities and accessibility requirements in line with the EC Strategy for the Rights of Persons with Disabilities 2021-2030.The project accomplishes this through rigorous cooperation between key global industry and labour market actors combined with a world-class HEI and VET consortium. INCLAVI will also further improve the collaboration between HEIs and VET.INCLAVI will design and co-create a new training curriculum utilising expertise from HEI, VET and Industry Actors to support the reskilling of aviation sector employees and key target groups who have a role in the passenger journey of PwDs from door to door. The training will address students and professionals in areas of work related to travel agencies, airports, and airlines.
