Wil H. E. Buntinx

Conceptualizing Supports and the Support Needs of People With Intellectual Disability

This is the third in a series of perspective articles (Schalock et al., 2007; Wehmeyer et al., 2008) from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The purpose of these articles is to share our thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to seek input from the field as we prepare the 11th edition of AAIDD’s Diagnosis, Classification, and System of Supports Manual (the working title). In the first article (Schalock et al., 2007), we explained the reasons for shifting from the term mental retardation to intellectual disability. Although the two terms cover the same population of individuals, we concluded that intellectual disability was the better term because it

Impact of environmental factors on community participation of persons with an intellectual disability: a systematic review

STUDY DESIGN A systematic review of the literature. OBJECTIVES To describe which environmental factors have an impact on community participation of persons with an intellectual disability. METHODS A systematic literature search was conducted for the period of 1996-2006 in Pubmed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the studies identified using predefined selection criteria. Aspects of community participation included were: domestic life; interpersonal interactions and relationships; major life areas; community, civic and social life. Environmental factors included were: products and technology; natural environment and human-made changes to environment; support and relationships; attitudes; services, systems and policies. RESULTS Out of 236 initial hits, 9 quantitative studies and 2 qualitative studies met the predefined selection criteria and were included in the study. Various research instruments were used in the studies and only one study used a conceptual framework. The review allowed the identification of a number of environmental factors positively affecting participation: opportunities to make choices; variety and stimulation of the environment of facilities; opportunities for resident involvement in policy making; small residential facilities; opportunities for autonomy; vocational services; social support; family involvement; assistive technology; and positive staff attitudes. A number of identified environmental factors negatively affecting participation are: lack of transport and not feeling accepted. DISCUSSION It can be concluded that little has been published about the impact of environmental factors on community participation. Many studies do not clearly define the concept of community participation. Research on the impact of environmental factors on community participation so far seems not to be based on a theoretical framework. Most studies focused on the impact of services on community participation in general.

The Intellectual Disability Construct and Its Relation to Human Functioning

The American Association on Intellectual and Developmental Disabilities’ (AAIDD) Terminology and Classification Committee has two primary purposes in publishing this Perspective: (a) to share our thinking about the construct underlying the term intellectual disability (henceforth the intellectual disability construct) and its relation to human functioning and (b) to ask for input from the field because the committee is preparing a proposal for the upcoming Definition, Classification and Systems of Supports manual, to be published in 2009 or 2010. The article has three sections. In the first section, we make a distinction between an operational definition, which operationalizes the intellectual disability construct and provides the basis for diagnosis and classification, and a constitutive definition, which explains the underlying construct and provides the basis for theory– model development and planning individualized supports. In the second section, we provide an historical overview of how the construct underlying the term mental retardation (henceforth, the mental retardation construct) differs from the construct underlying intellectual disability. In the third section, we describe the parameters to the proposed AAIDD theoretical framework of human functioning that reflects our current understanding of the multidimensionality of human functioning that underlies the intellectual disability construct and the significant role that individualized supports play in human functioning. The article concludes with a brief discussion of the benefits to the field that accrue from a clear understanding of both the differences between an operational and constitutive definition and the fundamental properties of the intellectual disability construct. Operational Versus Constitutive Definitions

Support values through the eyes of the patient: An exploratory study into long-term support of persons with refractory epilepsy

A significant group of persons affected by refractory epilepsy require a wide range of long-term support from professionals as well as informal support givers. To enhance person-centeredness, it is important to know which patient values are associated with long-term support. An Internet survey produced a total of 1176 statements from 289 persons with epilepsy for analysis. Statements were expressed in the respondents own words and were related to positive experiences (704) as well as possible areas of improvement (472) regarding the support received in the past six months. Thematic summaries of the survey results were presented to four focus groups of persons with epilepsy and proxies with a request to formulate the most important patient values which should be observed in long-term support. In iterative sessions with a panel of epilepsy experts, a framework of twelve value domains was formulated, organized in four major value clusters. An example of how these value domains can be operationalized for use in practice is next presented as a checklist to help evaluate the support patients with long-term support needs actually receive. Correspondingly, two sets of reflective questions were formulated for informal and professional support givers for the purpose of evaluating and improving person-centeredness in their support practices.

Sexuality and individual support plans for people with intellectual disabilities

BACKGROUND Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents. METHOD Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed. RESULTS A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents. CONCLUSIONS Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.