Papers by Roger Stancliffe
Journal of Applied Research in Intellectual Disabilities
BackgroundDeinstitutionalization research shows better services and outcomes relative to institut... more BackgroundDeinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never‐institutionalised service users.MethodsWe used propensity score matching (PSM) to match formerly institutionalised and never‐institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In‐Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation.ResultsOverall, 15.5% of participants in the 29‐state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former‐institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support‐related choice, and had a consistent pattern of disability service‐focused social connections.ConclusionsMany former institution res...
Journal of Vocational Rehabilitation
BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a var... more BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a variety of day/employment activities including community-based activities and work and facility-based activities and work. These different activities have important implications for community inclusion and economic independence. OBJECTIVE: The purpose of this study is to use the National Core Indicators-In person Survey (NCI-IPS) to explore the prevalence of day/employment activities for adult service users with IDD and to determine what personal and environmental factors are related to each type of activity. METHODS: The data analyzed in this study come from the 2018-19 National Core Indicators (NCI), a survey of adult services users with IDD in the U.S. We used descriptive statistics and multinominal logistic regression to explore how the various covariates differentially relate to the four day/employment activity types. RESULTS: A variety of personal and environmental characteristics wer...
Journal of Applied Research in Intellectual Disabilities
BackgroundRequiring adults with intellectual and developmental disabilities to go on community ou... more BackgroundRequiring adults with intellectual and developmental disabilities to go on community outings with co‐residents and staff is contrary to community‐living policy's focus on person centredness and choice of activities/companions.MethodWe analysed 2018‐19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non‐family, multi‐client settings. The focus outcome was being able to stay home if you want when others in your home go out.ResultsThe 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands.ConclusionsIndividuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person‐centredness are proposed.
Journal of Policy and Practice in Intellectual Disabilities, 2018
On December 13, 2006, after over two decades of advocacy efforts, the United Nations adopted the ... more On December 13, 2006, after over two decades of advocacy efforts, the United Nations adopted the Convention on Rights on Persons with Disabilities (CRPD). More than 150 countries have ratified or at least signed this international convention, to date. An important component of CRPD implementation is a systematic effort to evaluate whether and what extent the rights as stated in the CRPD are being upheld by individual countries. The purpose of this paper was to contribute to a U.S. and international discussion about monitoring the rights of persons with disabilities as codified by the CRPD by examining the potential use of the National Core Indicators Adult Consumer Survey (NCI‐ACS) for this purpose. The NCI‐ACS collects annual quality outcome data from over 13 000 people with intellectual and developmental disabilities in 46 U.S. states. A crosswalk between the CRPD Articles and the 2013–14 NCI‐ACS was conducted to map the survey questions onto the CRPD. Forty‐seven variables from t...
Journal of Intellectual and Developmental Disability, 2015
Handbook of Positive Psychology in Intellectual and Developmental Disabilities, 2017
Choice, Preference, and Disability, 2020
This chapter begins with a reflection on the range of reasons why choice is important. Definition... more This chapter begins with a reflection on the range of reasons why choice is important. Definitions of choice are considered next, including examination of common misunderstandings of choice. Next, I describe and analyse major assessments of choice availability, with attention to assessment involving self-reported choice versus choices reported by proxies. This section is followed by an examination of the major research findings concerning choice availability for adults with intellectual disability. This chapter also engages with the under-researched topic of choice within various types of relationships. Implementing choices with and without support is considered in the context of the implicit tension between autonomy-asindependence and autonomy-as-volition (see chapter "The Development of Choice-Making and Implications for Promoting Choice and Autonomy for Children and Youth with Intellectual and Developmental Disabilities"). This chapter concludes with a brief examination of 'what works': interventions that purport to enhance choice availability. A number of the issues canvassed are examined in more detail in other chapters of the book, so where appropriate, reference is made to the relevant chapters. Why Is Choice Important? There are multiple reasons why choice is particularly important for and to people with intellectual disability. First, people with disabilities themselves have stated repeatedly that they want to control their own lives (Miller, Cooper, Cook, & Petch, 2008). As New Zealand self-advocate Robert Martin put it, 'We want to live in a community that encourages us to learn about decision-making and to take
An individual enjoys the benefits of society by participating in that society. Many people with i... more An individual enjoys the benefits of society by participating in that society. Many people with intellectual disability need support and accommodations to be able to participate in everyday activities and have a real life. P eople with severe disability are especially vulnerable to experiencing very limited participation. Individuals living in institutions are likely to be under active and have little or no access to the community. Higher levels of participation are evident in community living, but there remain large differences in participation between individuals . Research on community living shows clearly that two main factors affect the degree of participation in activities: adaptive behaviour skills and support for participation from carers. This paper looks at participation by people with intellectual disability and the appropriate support needed to facilitate participation so that people can enjoy a full life. A small but significant stream of research involving people with ...
There is increasing recognition of the value of coproduction and inclusion of people with disabil... more There is increasing recognition of the value of coproduction and inclusion of people with disability in research, and a growing literature on inclusive methods, particularly involving people with intellectual disability. This article critically examines the ways leadership by, and collaboration and consultation with, people with disability informed the development of a framework to monitor Australia’s progress on reducing inequalities in the social determinants of health and wellbeing for people with disability. It focuses especially on the contribution of an expert panel of advice comprising people who live with disability. Input from the expert panel resulted in changes to the language, shape, and detail of the framework and highlighted the complexity easily hidden when people’s lives and experiences are measured and quantified. The article provides a practical illustration of the value of lived expertise and challenges universities and researchers to work harder to ensure people ...
Journal of Public Health, 2021
Background The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people w... more Background The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. Methods Secondary analysis of data collected in Wave 9 and the special April, May and June COVID-19 monthly surveys of ‘Understanding Society’, the UK’s main annual household panel study. Results During the first 3 months of the introduction of the COVID-19 lockdown in the UK, respondents with disability were more likely than their peers to be working reduced hours and experience higher levels of financial stress. These differences were attenuated, but not eliminated, when estimates were adjusted to take account of pre-lockdown financial status. Conclusions Working age adults with disability were particularly disadvantaged by the financial impact of t...
Journal of Policy and Practice in Intellectual Disabilities, 2017
BMJ Open, 2019
ObjectiveTo review systematically the evidence on how deinstitutionalisation affects quality of l... more ObjectiveTo review systematically the evidence on how deinstitutionalisation affects quality of life (QoL) for adults with intellectual disabilities.DesignSystematic review.PopulationAdults (aged 18 years and over) with intellectual disabilities.InterventionsA move from residential to community setting.Primary and secondary outcome measuresStudies were eligible if evaluating effect on QoL or life quality, as defined by study authors.SearchWe searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches. We assessed study quality using the Critical Appraisal Skills Programme suite of tools, excluding those judged to be of poor methodological quality.ResultsThirteen studies were included; eight quantitative studies, two qualitative, two mixed methods studies and one case study. There was substantial agreement across quantitative and qualitative studies that a move to community living was associated with im...
Journal of Applied Research in Intellectual Disabilities, 2010
Journal of Applied Research in Intellectual Disabilities
Mental Retardation and Developmental Disabilities Research Reviews, 2001
The purpose of this article was to collate evidence to describe where people with mental retardat... more The purpose of this article was to collate evidence to describe where people with mental retardation or developmental disabilities live in five developed countries: United States, Canada, England, Wales, and Australia. Family homes are important dwelling places for people with mental retardation. They are the home of the great majority of children with mental retardation and a considerable proportion of adults with mental retardation. The likelihood of placement outside the family home increases with adulthood and progressively as people age. Adults with mental retardation live in a wide variety of settings, with formal residential provision frequently dependent on the arrangements that the authorities responsible for providing service support have chosen to make. There has been a considerable move away from accommodating people in large segregated and geographically isolated institutions in the countries considered. However, the current range of accommodation includes much with a distinctively different character to the homes where other citizens live. Many people still live in larger groups than would be ordinarily found in typical homes and this may necessitate departure from the architectural norm. In all of the countries considered, there has been a recent trend towards small community settings, compatible with typical housing architecture. This appears furthest advanced in the U.S. but is discernible elsewhere. Availability of residential services at a national level varies between 100 and 155 places per 100,000 total population. Regional variation within countries is even greater. In no case is the national availability considered adequate to meet the demand arising from changing need or expectations. MRDD Research Reviews 7:115-121, 2001. (c) 2001 Wiley-Liss, Inc.
Journal of Intellectual Disability Research, 2005
Background The importance of the valid assessment of quality of life (QOL) is heightened with the... more Background The importance of the valid assessment of quality of life (QOL) is heightened with the increased use of the QOL construct as a basis for policies and practices in the field of intellectual disability (ID). Method This article discusses the principles that should guide the measurement process, the major interrogatories (i.e. who, what, when, where, why, and how) of QOL measurement, issues and procedures in the cross-cultural measurement of QOL, and the current uses of QOL data. Results Based on the above methods, the article presents a number of important guidelines regarding QOL measurement. Conclusion From a measurement perspective the use of the QOL construct is changing. Initially it was used as a sensitizing notion, social construct, and unifying theme. Increasingly, it is being used as conceptual framework for assessing quality outcomes, a social construct that guides quality enhancement strategies, and a criterion for assessing the effectiveness of those strategies. This new role places additional emphasis on the valid assessment of one's QOL. Keywords cross-cultural quality of life, intellectual disability, quality of life, quality of life data, quality of life measurement
Journal of Intellectual Disability Research, 2009
Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs i... more Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined. This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue. Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID. The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.
Journal of Applied Research in Intellectual Disabilities, 2006
... Caine A. (1997) Listening to adolescents and adults with intellectual disabilities from South... more ... Caine A. (1997) Listening to adolescents and adults with intellectual disabilities from South Asian communities. Journal of Applied Research in Intellectual Disabilities 10, 250263. Bayley M. (1997) What Price Friendship: Encouraging the Relationships of People with Learning ...
International Journal of Law and Psychiatry, 2006
There has been increasing international, national and local recognition of the need for more appr... more There has been increasing international, national and local recognition of the need for more appropriate responses and services for individuals who come in contact with the criminal justice system and who have an intellectual disability and mental health issues. This article provides an overview of prevalence data that indicates a significant over representation of people with intellectual disabilities in correctional facilities and reviews the problems facing this population. Findings from two specific evaluation studies undertaken by the Centre for Developmental Disability Studies are presented, along with recommendations for future provision based on these results. One of these projects trialled a case management approach to supporting offenders with an intellectual disability upon their release from prison. The 20-month follow-up found that a number of serious barriers were encountered within the overall system of provision for this population; the most serious of which related to lack of adequate accommodation upon release. The second project involved a two-stage evaluation of one model of provision for individuals with intellectual disabilities who are sex offenders, only some of whom were on parole. This service provided both residential and therapy services in a small group home located in the community. Residents were found to have high levels of emotional and behavioural difficulties, in addition to offending behaviour, that continue to require support and supervision. Critical issues, including guardianship involvement, restrictive practices and retrieval, therapy provision, and risk management issues are discussed in relation to overall clinical and lifestyle outcomes.
Intellectual and Developmental Disabilities, 2012
This study describes service users with Down syndrome (N = 1,199) and a comparative sample with... more This study describes service users with Down syndrome (N = 1,199) and a comparative sample with intellectual and developmental disabilities but not Down syndrome (N = 11,182), drawn from National Core Indicator surveys of adult service users in 25 U.S. states. Individuals with Down syndrome were younger than were individuals without Down syndrome. Men with Down syndrome were older than women with Down syndrome, whereas the reverse was true of the individuals without Down syndrome. Most (68%) people with Down syndrome had mild or moderate intellectual disability. The prevalence of vision impairment, hearing impairment, and physical disability increased with age. Adults with Down syndrome were more likely to have Alzheimer's dementia, have a hearing impairment, or be overweight, but they were less likely to have a physical disability than those without Down syndrome. Adults with Down syndrome were less likely to live in institutions or their own home, but they more likely to l...
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Papers by Roger Stancliffe