Roger J. Stancliffe

Personal Control and the Ecology of Community Living Settings: Beyond Living-Unit Size and Type.

Personal control exercised by 74 adults from community living settings in Minnesota was evaluated. Comparisons between living-unit sizes or types controlled statistically for pre-existing differences in adaptive and challenging behavior. Individuals living semi-independently exercised more personal control than did residents of HCBS Waiver-funded settings, who had more personal control than persons from community ICFs/MR. Within the 1- to 5-person size range, size-related differences were detected in personal control. Using hierarchical regression, we found that personal characteristics, self-determination competencies, and environmental variables all made significant, unique contributions to predicting personal control. Path analysis also revealed that this range of variables was related to personal control. These findings strongly support an ecological approach to self-determination.

Peer-Mediated Teaching and Augmentative and Alternative Communication for Preschool-Aged Children with Autism.

Abstract Background The aim of this study was to assess the effectiveness of two communication interventions for preschool-aged children with autism. Method Six typically developing peers were taught to implement peer-mediated naturalistic teaching, with and without a speech generating device (SGD), during play sessions with 3 classmates with autism in three preschools. Generalisation probes were conducted during mealtimes at the preschools. A multiple baseline design was used to assess the outcomes of the two intervention conditions. Results All 3 children with autism increased their communicative behaviours immediately following the introduction of the two interventions, and generalised these increases to mealtime interactions with their peers. However, only 1 child maintained these increases in communication. Conclusion These results provide preliminary evidence for the effectiveness of combining peer-mediated naturalistic teaching with the use of SGDs for preschool-aged children with autism. Suggestions for improving the maintenance of intervention effects are provided.

Outcomes and costs of community living: A matched comparison of group homes and semi-independent living

Consumer outcomes and recurrent (non-capital) service costs were compared for matched groups of Australian adults with intellectual disability living in group homes or semi-independently. Outcomes examined included quality of life, safety, aloneness, social dissatisfaction, personal care, domestic management, health care, money management, social network, use of mainstream community services, community participation, domestic participation, stability of place of residence, living companion turnover, and natural support. Most outcomes did not differ significantly by group. Where significant differences were evident, participants living semi-inde pendently experienced better outcomes: significantly less social dissatisfaction, more frequent and independent use of community facilities, more participation in domestic tasks, and greater empowerment. There were no outcomes with significantly better results for group home participants. The lower level of staffing provided to semi-independent participants w as not associated with poorer outcomes. Per-person expenditure was substantially higher for group home participants.

Proxy respondents and quality of life

Abstract Schalock, Bonham, and Marchand [(2000). Evaluation and Program Planning, 23 (1), 75–85] used self-reports or proxy responses in their analysis of quality of life. This paper examines the appropriateness of that approach and reviews broader issues concerning the use of proxies and consumer:proxy agreement. These issues include: dealing with data from different sources (i.e., consumers and proxies), confounding of information source and consumer characteristics, response biases in self-reports, and future research on proxies.

Longitudinal study of deinstitutionalization and the exercise of choice

Day-to-day choices available to former institution residents with severe/profound developmental disabilities (movers) were assessed before and after deinstitutionalization and compared with peers who remained in the same institutions (stayers). Data were gathered annually for both groups for 3 years after baseline. Personal characteristics of the two groups did not differ significantly at baseline, except that stayers exhibited more challenging behavior. This was controlled by using baseline challenging behavior as a covariate in group comparisons. Overall, movers exercised significantly more choice, although groups did not differ at baseline. Effects of deinstitutionalization did not differ with level of disability. However, the absolute level of choice available to both movers and stayers was very low.

Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities

As more individuals with intellectual/developmental disabilities are physically included in community life, in schools, neighborhoods, jobs, recreation, and congregations, the challenge of going beyond physical inclusion to true social inclusion becomes more apparent. This article summarizes the status of the research about community participation and social inclusion, summarizes some debates and points of contention, notes emerging research issues, and highlights needed areas of research. It is clear that most research on these topics has been conducted with individuals who are in paid formal services, and there are great needs for understanding the community participation of individuals who live on their own or with their families, as well as researching social inclusion by focusing on the attitudes and experiences of community members themselves, not just individuals with disabilities and paid providers.

Overweight and Obesity Among Adults With Intellectual Disabilities Who Use Intellectual Disability/Developmental Disability Services in 20 U.S. States

The authors compare the prevalence of obesity for National Core Indicators (NCI) survey participants with intellectual disability and the general U.S. adult population. In general, adults with intellectual disability did not differ from the general population in prevalence of obesity. For obesity and overweight combined, prevalence was lower for males with intellectual disability than for the general population but similar for women. There was higher prevalence of obesity among women with intellectual disability, individuals with Down syndrome, and people with milder intellectual disability. Obesity prevalence differed by living arrangement, with institutional residents having the lowest prevalence and people living in their own home the highest. When level of intellectual disability was taken into account, these differences were reduced, but some remained significant, especially for individuals with milder disability.

The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability

Although choice is widely regarded as an essential component of quality of life, researchers have made few attempts to develop and evaluate psychometrically sound instruments to measure the availability of choice to people with intellectual disability. This paper presents information on the development and evaluation of the Choice Questionnaire. The scale can be administered by interviewing the consumer or may be completed by a knowledgeable proxy. Used in either of these ways, the Choice Questionnaire was found to have very satisfactory reliability and validity. Its use as a research and evaluation tool is discussed.

Self-Advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self‐advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy‐makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self‐identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research. †In memory of our dear friend Allison J. Dewing‐Moore, died 3 November 2005.

Incidence of and risk factors for falls among adults with an intellectual disability

BACKGROUND Falls among people with intellectual disability (ID) occur at a younger age than the general population and are a significant cause of injury and hospitalisation. There is very limited research investigating risk factors for falls among people with ID and none with people living outside of formal care arrangements, either independently or with their family.We used a medical chart audit to identify the incidence and risk factors for falls among people with ID living in a variety of settings. METHODS We retrospectively identified 114 consecutive patients, aged 18 years and over who attended a clinic for people with developmental disabilities within a 15-month period. Fall information was measured by carer recall of falls in the past 12 months. Potential risk factors were extracted from medical reports and a patient information questionnaire. Potential predictors were identified using univariate analysis and entered into a multiple logistic regression. RESULTS Of 114 participants, 39 (34%) reported a fall in the previous 12 months.The number of reported falls was similar for formal care and non-formal care arrangements.The vast majority of fallers (84%) reported sustaining an injury from a fall and many potential risk factors were identified. Multivariate analysis revealed having seizures in the past 5 years, a history of fracture and increasing age were risk factors for falls. CONCLUSIONS Falls are a significant health concern for adults with ID of all ages as a result of their incidence and the resulting injuries. Falls appear to be equally an issue for people residing in formal and non-formal care accommodation. Further research is needed to develop screening tools and interventions for this population.