The sexual health knowledge of people with intellectual disabilities: A review.

There is a growing recognition that people with disabilities have the same sexual needs and rights as people without disabilities. However, less attention is paid to the sexuality of people diagnosed with intellectual disabilities. This narrative review summarises what is currently known about the level of sexual health knowledge of people with intellectual disabilities. A literature review was conducted of the published literature using Google Scholar, PubMed, PsychInfo, EBSCOhost, and Science Direct. Forty eight articles were identified that addressed the question about the level of sexual health knowledge of people with intellectual disabilities. Overall, studies demonstrate that people with intellectual disabilities are highly variable in levels of sexual knowledge, but on average have a range of deficits in knowledge compared to non-disabled individuals. More tailored education and support in accessing formal and informal sources of information are needed.

Young people with learning disabilities who sexually harm others: the role of criminal justice within a multi-agency response

This paper outlines the key findings from a recent study of statutory service responses to young people with learning disabilities who show sexually inappropriate or abusive behaviours, with a particular focus on the involvement of criminal justice agencies. The study found that although inappropriate sexual behaviours were commonplace in special schools, and that serious acts of abuse including rape had sometimes occurred, education, welfare and criminal justice agencies struggled to work together effectively. In particular, staff often had difficulty in determining the point at which a sexually inappropriate behaviour warranted intervention. This problem was frequently compounded by a lack of appropriate therapeutic services. In many cases this meant that no intervention was made until the young person committed a sexual offence and the victim reported this to the police. As a consequence, young people with learning disabilities are being registered as sex offenders. The paper concludes by addressing some of the policy and practice implications of the study’s findings, particularly those which relate to criminal justice.

Independence or Protection - does it have to be a choice? Reflections on the abuse people with learning disabilities in Cornwall

This commentary will use recent events in Cornwall to highlight the ongoing abuse of adults with learning disabilities in England. It will critically explore how two parallel policy agendas – namely, the promotion of choice and independence for adults with learning disabilities and the development of adult protection policies – have failed to connect, thus allowing abuse to continue to flourish. It will be argued that the abuse of people with learning disabilities can only be minimised by policies which reflect an understanding that choice and independence must necessarily be mediated by effective adult protection measures. Such protection needs to include not only an appropriate regulatory framework, access to justice and well-qualified staff, but also a more critical and reflective approach to the current orthodoxy which promotes choice and independence as the only acceptable goals for any person with a learning disability.

Young people with learning disabilities who sexually abuse: understanding, identifying and responding from within generic education and welfare services

This chapter will start by providing an overview of current knowledge about young people with learning disabilities who sexually abuse. Research cited will, unless otherwise indicated, be limited to UK studies since international variations in the definitions of both learning disability and sexual abuse make the use of a wider literature base problematic – particularly that relating to prevalence and incidence. It will then go on to report key findings from a recent study (Fyson et al, 2003; Fyson, 2005) which examined how special schools and statutory child protection and youth offending services in four English local authorities responded to sexually inappropriate or abusive behaviours exhibited by young people with learning disabilities. It will conclude by highlighting areas of current practice which give cause for concern, and suggest some pointers for future best practice.

People with psychiatric disabilities, employment, and the Americans with Disabilities Act : turning policy into practice : report from the Center for Mental Health Services ADA Roundtable, January 25-26, 1995 /

"The report ... summarizes the major points of discussion at the meeting as well as integrating other pertinent information"--P. iii.

Brazilian version of the Quality of Care Scale: the perspective of people with disabilities

OBJECTIVE To analyze evidence of the validity and reliability of a Brazilian Portuguese version of the Quality of Care Scale from the perspective of people with physical and intellectual disabilities.METHODS There were 162 people with physical disabilities and 156 with intellectual disabilities from Porto Alegre and metropolitan region, who participated in the study in 2008. Classical psychometrics was used to independently analyze the two samples. Hypotheses for evidence of criterion validity (concurrent type) were tested with the Mann-Whitney test for non-normal distributions. Principal components analysis was used to explore factorial models. Evidence of reliability was calculated with Cronbach alpha for the scales and subscales. Test-retest reliability was analyzed for individuals with intellectual disabilities through intra-class correlation coefficient and the Willcoxon test.RESULTS The principal components in the group with physical disabilities replicated the original model presented as a solution to the international project data. Evidence of discriminant validity and test-retest reliability was found.CONCLUSIONS The transcultural factor model found within the international sample project seems appropriate for the samples investigated in this study, especially the physical disabilities group. Depression, pain, satisfaction with life and disability may play a mediating role in the evaluation of quality of care. Additional research is needed to add to evidence of the validity of the instruments.

The Broader Impact of Disability Research: Aligning Public Policy with the Experiences of People with Disabilities and Healthcare Providers

Thesis (Ph.D.)--University of Washington, 2016-07

Challenges to improve inter-professional care and service collaboration for people living with psychiatric disabilities in ordinary housing

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking backevaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

Presentations of physical illness in people with developmental disability: the example of gastro-oesophageal reflux

People with developmental disabilities are becoming an important part of the general practice population. Although they have a similar range of medical conditions to the general population, there are some important differences in prevalence, risk factors, presentation and management of particular conditions. We use gastro-oesophageal reflux to illustrate how developmental disability may affect the presentation, assessment and management of a common condition.

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Few studies have been found that to assess the factors that explain higher levels of familyburden in adults with intellectualdisability (ID) and intellectualdisability and mental disorders (ID-MD). The aims of this study were to assess familyburden in people with ID and ID-MD and to determine which sociodemographic, clinical and functionaldisabilityvariables account for familyburden. The sample is composed of pairs of 203 participants with disability and their caregivers, of which 33.5% are caregivers of people with ID and 66.5% of ID-MD. Assessments were performed using scales of clinical and functionaldisability as the following instruments: Weschler Adult Intelligence Scale-III (WAIS-III), Inventory for Client and Agency Planning (ICAP), Psychiatric Assessment Schedule for Adults with Development Disability (PAS-ADD checklist), Disability Assessment Schedule of the World Health Organization (WHO-DAS-II) and familyburden (Subjective and Objective FamilyBurden Inventory - SOFBI/ECFOS-II). People with ID-MD presented higher levels of functionaldisability than those with ID only. Higher levels of familyburden were related to higher functionaldisability in all the areas (p < 0.006-0.001), lower intelligence quotient (p < 0.001), diagnosis of ID-MD (p < 0.001) and presence of organic, affective, psychotic and behavioral disorders (p < 0.001). Stepwise multiple regression showed that behavioral problems, affective and psychotic disorder, disability in participation in society, disability in personal care and presence of ID-MD explained more than 61% of the variance in familyburden. An integrated approach using effective multidimensional interventions is essential for both people with ID and ID-MD and their caregivers in order to reduce familyburden.

Resilience factors of university and college students with learning disabilities as revealed through retrospective interviews /

This qualitative study examined resilience factors of eight university and college students with learning disabilities as revealed through retrospective interviews. This study has added to the existing literature surrounding resilience especially as it relates to individuals with learning disabilities. This study may provide additional insight into the emotional impacts of repeated and chronic risks on students with learning disabilities. The major themes that emerged using the interpretive phenomenological analysis method (Smith & Osborn, 2003) were organized under these four major headings: Challenges and Obstacles, Surviving Challenges, Supportive Conditions, and A Journey of Discovery and Hope. An adaptation of the listening guide analytical method (Gilligan, Spencer, Weinberg, & Bertsch, 2003) was also utilized and offered a more personal depiction of the participants and an exploration of the unique contributions their stories made to this study. Specifically, a theme of feeling trapped/wanting to escape emerged as a reaction to adversity faced during elementary school years. Furthennore, this study has demonstrated that for several of the participants, the benefits of positive outlets extended beyond nurturing areas of strength and self-esteem to also include the provision of a short respite from their challenges and enhanced feelings of overall well-being. Additionally, this study may add to the existing literature surrounding character traits evident in resilient students, specifically highlighting the significance of optimism and selfacceptance.

Supporting and maximizing communication between individuals with intellectual disabilities and health care providers

The goal of the present study was to examine the barriers to access in health services faced by individuals with intellectual disabilities (ID), as well as the nature of communication between people with ID and those who are directly involved in supporting their health and well being. The study included in-depth interviews with five adults who have been identified as having ID and are supported by a community agency, five community agency support staff and four physicians who are specialists in supporting people who have ID. A qualitative content analysis approach facilitated the comparative exploration of key themes that each participant group saw as positive or negative influences on health care access and on effective health care communication. Themes drawn from the findings emphasize the unique roles each of these groups plays within the dialogical framework of the health care encounter. Of particular importance to informants was the issue of people with ID being seen as full participants in their own health care who, like all people, are unique individuals and not simply members of an identified or marginalized group. Participants across groups emphasized the need for the health care recipient to be known as an individual who is an expert in her/his own health and well being and, therefore, entitled to full participation with the support of but not control by others.

The practical application of a meta-analysis of deinstitutionalization : adaptive behaviour outcomes and the piloting of a transitional questionnaire for adults with intellectual disabilities

This investigation examined the effects of de institutionalization on the adaptive behaviour and adjustment of adults with intellectual disabilities (ID). In study 1, a meta-analysis was conducted with 23 studies on deinstitutionalization adaptive behaviour outcomes. Deinstitutionalization was associated with modest improvements in adaptive behaviour however outcomes varied across adaptive behaviour domains and other substantive variables. Clinical and service implications of these results were explicated. Noting the trends from the meta-analysis, study 2 used this information in refining and piloting an Agency Transition Survey used to evaluate community transitions for persons with ID. Information derived from the survey was found to be valuable and adequate for the effective evaluation of transitional success. Potential applications of the survey and meta-analysis results were illustrated.