Due to emancipation process there is need for information on Deaf culture - Is there a Deaf Culture in the Netherlands? - If so what is it? How can we define it? - What are priorities in research? - How best disseminate results in Deaf community? - Lobby for rights of Deaf people (Unesco 1994; UN Convention on the rights of Persons with Disabilities 2006)
This publication is a result of an international research project which took place from 2012-2014. Among the participators were four universities, number of service providers, NGOs and people with psychiatric and learning disabilities from Amersfoort and Maastricht in the Netherlands, Budapest in Hungary and Tallinn in Estonia. The aim of the project was to explore the wishes and needs of persons with psychiatric or learning difficulties with regard to community participation, and how services could be (more) supportive in order to meet these needs. We also looked at local policies, especially from the perspective of the UN Convention on the Rights of Persons with Disabilities (CRPD). From the research we learn that regardless of the country where people live, persons with disabilities have similar struggles to cope with vulnerability and deprivation. They also share the same desires as any other human being: the wish to live a good and valued life, to have meaningful activities and to belong to a social community. The stories in this book were selected from the interviews which were conducted by researchers during the project. The portraits illustrate experiences of illness, disability and recovery. They also reflect experiences of using social- and mental health services, exclusion and inclusion. By reading these stories we see, how multifaceted life can be, and what are the challenges towards the real participation in community
Most European states have ratified the UN Convention on the Rights of Persons with Disabilities (CRPD), but implementation varies at national and local levels with municipalities often playing a key role. Decentralization policies have often led to municipalities providing social support as well, but little attention has been paid to the accessibility of municipal support for persons with disabilities in the light of the CRPD. Therefore, this article presents the Dutch 2015 Social Support Act (SSA) as a case study. The SSA introduces the right to an assessment. This legal evaluation moment has far-reaching consequences for persons with disabilities as it serves as the gateway for access to reasonable accommodations under the CRPD. Dutch municipal councils implement their assessment systems in different ways, but social district teams are usually set up to execute the assessment under the mandate of the municipality. It is often the case that social workers fulfil both counselling and gatekeeping roles, despite the fact that they are not necessarily trained to combine these dual responsibilities. This article identifies impeding factors that influence the gaining of access to municipal social support at the level of the social system, the involved organizations and the individual professionals. It takes a legal-anthropological approach based on in-depth multidisciplinary interviews with experts in the field of disability rights advocacy, social policy and human rights, or with experiential expertise. The results indicate a lack of alignment between the SSA and the CRPD. The discussion gives recommendations for a broader implementation of the CRPD.
LINK
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’).
