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Mansell & Beadle‐Brown (2004) raise a number of concerns about the possible impact of the systematic introduction of person‐centred planning (PCP) across services for people with intellectual disabilities in the UK. We too foresee a danger that system‐wide adoption of PCP will be characterised over zealous 'selling' of the purported benefits without sufficient attention to the difficulties and without the necessary changes to system architecture to ensure that those involved in PCP have the authority or resources to achieve the plan's goals. If so, PCP will become another fad, and service users, and their families will become even more discouraged, disheartened and alienated by a system characterised by rhetoric rather than meaningful action. Where we differ, is in the interpretation of the existing evidence regarding the impact of individual planning systems in general and, perhaps, in the way forward.

This study provides longitudinal analysis of day program and work activities of 61 individuals leaving Minnesota state institutions and a comparison group of 71 people remaining institutionalized. The study examines the different types of work and developmental programs that the participants attended and the factors associated with those differences. Comparisons are made between movers and stayers, over a 3 year period, of earnings, choice, hours of participation, the size of the group in which participants were served, individual program objectives, specific professional services received, and participants' social networks. Only 13% of movers experienced integrated employment. As a group, the people who remained institutionalized actually earned more money. In terms of employment and other day activities, the movement from public institutions to community living provided few objective benefits. Implications for ongoing deinstitutionalization efforts are discussed.

AbstractThe Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and policies toward individuals with disabilities worldwide and to foster the inclusion and independence of persons with disabilities in society. The current study was designed to assess empirically the extent to which people with intellectual and developmental disabilities (IDD) exercise certain rights in the United States using the National Core Indicators Adult Consumer Survey (NCI‐ACS), particularly to see if items could be scaled to measure certain CRPD articles reliably. An additional aim was to assess the impact of guardianship on the rights of individuals with IDD. NCI‐ACS data were analyzed employing factor analysis, multiple analysis of variance, and regression modeling. These approaches allowed us to assess the relationship between guardianship and rights controlling for known covariates (such as level of ID) on outcomes. Results indicate that the NCI‐ACS contains several items with sound psychometric properties that can assist in measuring certain rights of people with disabilities according to CRPD. Specifically, employment and budgetary agency appear to be areas of rights outlined by the CRPD that the NCI‐ACS can help measure. Finally, the results indicated that people who have an appointed legal guardian are less likely to be employed and to have less social privacy. This study indicates the NCI‐ACS has the potential to measure access to CRPD rights, such as employment and budgetary agency, by people with IDD. More work is needed to evaluate additional promising measures of a wider range of CRPD articles. Alternatives to guardianship need to be examined in order to increase the opportunities for people with IDD to exercise their rights.

AbstractBackgroundTransport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness.MethodData from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options.ResultsFindings confirmed that this population depends on others for transportation. The most frequently used mode, staff‐supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes.ConclusionsTransport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

AbstractEmployment is a fundamental part of adult life. Adults with intellectual disability (ID) face multiple barriers to employment, however, and are underrepresented in the paid workforce. Formal volunteering has been promoted as both a stepping stone and an alternative to employment for some adults with disability. The purpose of this article is to provide an overview of research findings relating to volunteering and employment for work‐age adults with ID. Few studies have examined the experiences of adults with ID who volunteer. The findings indicate that volunteering alone is unlikely to lead to employment for adults with ID. However, some adults with ID view volunteering as a meaningful and desirable alternative to paid work. There is a need for further research to examine the relationship between volunteering and employment for adults with ID. In addition, there is a need for practice guidelines to ensure that the outcomes for adults with ID who volunteer, and those who seek paid employment, are successful.

This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services. The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning