Geert Van Hove

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Person-Centered Planning: Analysis of Research and Effectiveness

Person-centered planning is a well known and widely used approach to individual program planning in the field of intellectual and developmental disabilities. Its purpose is to develop collaborative supports focused on community presence, community participation, positive relationships, respect, and competence. Because there is little research on its effectiveness, our purpose here was to (a) review the current status of effectiveness research; (b) describe its effectiveness in terms of outcomes or results; and (c) discuss the effectiveness of person-centered planning in relation to evidence-based practices. Analyzed studies suggest that, overall, this planning has a positive, but moderate, impact on personal outcomes for this population. The body of evidence provided in this review is weak with regard to criteria for evidence-based research.

The influence of supports strategies, environmental factors, and client characteristics on quality of life-related personal outcomes

The concept of quality of life (QOL) is increasingly being used as a support provision and outcomes evaluation framework in the field of intellectual disability (ID). The present study used a hierarchical multiple regression research design to determine the role that available supports strategies, environmental factors, and client characteristics play in assessed quality of life-related personal outcomes. Data were collected in Arduin Foundation in The Netherlands. Participants were 186 individuals with an intellectual disability. Results indicated that QOL-outcomes were significantly impacted by the availability of support strategies, living arrangement, status of employment and level of ID.

Living through exposure to toxic psychiatric orthodoxies: exploring narratives of people with ‘mental health problems’ who are looking for employment on the open labour market

This article explores lived experiences and insights of five people with long‐term ‘mental health problems’, focusing on their search for employment in a disabling society. In our qualitative, inductive analysis we investigate why it seems almost impossible to attain a status as respected adult workers. We present five central findings: (1) losing the game before it starts; (2) internalizing the vicious circle of victim blaming; (3) from control overload to a life with inadequate supports; (4) from crushed dreams back to passive inactivity; (5) signs of resilience and resistance. In meaningful dialogue survivors give voice to alternative and plural epistemological grounds of life with ‘madness’. In our concluding reflections we argue that psychiatric discourses, what we term toxic psychiatric orthodoxies, silence, disable and construct survivors as unemployable.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

OBJECTIVES To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

‘I want support, not comments’: children's perspectives on supports in their life

Even though supports are a major part of the daily lives of children with special educational needs who participate in general education schools, little attention has been paid to how children experience supports. Six children and their peers who were interviewed appreciated supports because they remove restrictions in activities due to the impairment. However, their experiences also show how these positive supports can have negative psycho‐emotional repercussions, and are less focused on addressing disabling barriers. The childrens accounts demonstrate the ambiguous and situated nature of supports, and the need for the children to be able to direct supports as ‘chief partners’ in the inclusion process.

Assessing Individual Support Needs to Enhance Personal Outcomes

Education and human service organizations providing services to people with intellectual and closely related developmental disabilities are increasingly being impacted by the supports paradigm, the quality of life concept, and the evaluation of personal outcomes. In this article the authors discuss the relationship among these three areas, including examples that illustrate how assessed support needs data can be aligned with quality-of-life–related core domains so as to establish individualized support systems that enhance personal outcomes. The article concludes with a discussion of the implications for educators and habilitation professionals of integrating the supports paradigm, the quality of life concept, and the evaluation of personal outcomes.

Living on the Margin: Disabled Iranians in Belgian Society.

This paper explores the antecedents, experiences and consequences of marginalization as reported and dealt with by disabled Iranian immigrants in Belgium. This work extends the work of Gallie and colleagues and Siegrist demonstrating that the forces of marginalization applicable to all immigrants are particularly pertinent to disabled immigrants. The research is based on 26 in‐depth, face‐to‐face interviews, focus groups, interviews with government officials and immigration experts, ethnographic work and official government statistics. The findings detail how the combined forces of history, context and reasons for immigration; isolation, vulnerability and perceived loss of control; religion and rejection; lack of reciprocity in social exchanges; problems in obtaining jobs; and difficulties in negotiating an entry into Belgian society combine to sustain marginizalation. As a consequence, disabled immigrants in this group are generally excluded from society and discriminated against in terms of citizenship, education, jobs and general acceptance.

The roller-coaster of experiences: becoming the parent of a deaf child

When early testing indicates a hearing loss, parents find themselves on a roller-coaster of experiences leaving little time or space for reflection. This study is based on interviews with families in the Flemish region of Belgium, one of the earliest in the world to introduce universal neonatal screening for hearing loss. Starting from a phenomenological approach, we explore parents’ accounts of their experiences in order to uncover the meanings of early parenting of a child identified with a label. Soon after birth, these parents encounter a different world in which intertwined discourses construct parenthood with a deaf child. During the process of becoming a parent, representations of deafness as impairment were omnipresent. In contrast to a medical and technological perspective that insists on the need to intervene as fast as possible, it is argued that the private and social implications of rapid intervention require explicit consideration.

Communities of Practice in Inclusive Education.

The data in this paper represent the experiences and perspectives of parents and teachers who worked as communities of practice, designing support plans for the inclusion of three students with intellectual disabilities in general education classrooms. Their reflections, obtained through interviews and questionnaires, show how they constructed relevant knowledge to support these children with special educational needs in their class. The findings show the potential benefits of partnerships and local knowledge in addressing the educational challenge of inclusion.