Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability

The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author’s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author’s design have been used in the research. Likert-type scale “Perspective of intellectual disability” has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author’s own design have been used: a Likert-type scale “The essence of sexuality in persons with an intellectual disability” which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.     

Valuing the Place of Young People with Learning Disabilities in the Arts

Methodologies of embodied learning, radical pedagogies and applied drama offer a lens through which to investigate the empowerment of young people with learning disabilities in Northern Ireland, thus counteracting more traditional, disempowering methods. According to Helen Nicholson, the “participatory, dialogic and dialectic qualities as effective and democratic ways of learning” (2005, p. 38), which advocates of applied drama expound, encourage interactivity and collaboration that is at the same time active and critical. Transformative inquiries involving action, where people change their way of being and doing and relating in their world, is based on practical knowing-how. Having the right practices in place is thus essential in engaging young people marginalised by traditional modes of learning. This paper charts the course of a group of young people with learning disabilities using theatre to explore ways in which they can express the emotions and dilemmas they face in transitioning from young people “participating” in their world to more actively engaging in arts leadership roles. A comparison is drawn with Swedish models of disability arts, which tend towards a relative or weaker social model of disability—more akin to the World Health Organisation’s International Classification of Functioning, Disability and Impairment than the one we are used to in the United Kingdom—which I argue is more suited to inclusion of young people with learning disabilities. Questions of facilitation, co-creation and participation are examined in light of this comparison.     

Beyond good practice: Issues in working with people with intellectual disability and high support needs

Many more people with an intellectual disability now live in the community as a result of de-institutionalization. Occupational therapy is one service that assists people with intellectual disabilities to participate as fully as possible in their local communities. Despite the potential benefits of occupational therapy, there is little written about the types of interventions used and the effectiveness of their outcomes with people with intellectual disabilities. The present interview study about current occupational therapy practice with people with intellectual disabilities and high support needs was conducted with experienced Australian clinicians. Positive outcomes for clients with high support needs were achieved in two ways: (i) by what therapists do; and (ii) by the features of the therapy relationship. In addition, interventions that indirectly empowered clients and changed others' perceptions were seen to have the most positive effect. The findings are discussed with regard to current occupational therapy literature and implications for occupational practice and education are presented.     

Peer Educators in the Facilitation of Sexuality and Respectful Relationship Education for People with an Intellectual Disability: A Scoping Review and Narrative Synthesis

A scoping review was conducted to identify how peer-education models are being used in sexuality and respectful relationship education for people with a disability. The search was conducted in August 2021 using the Joanna Briggs framework to scope and map the literature and research activity. Using strict criteria, 7 online databases, grey literature and reference lists were searched for resources written or published in the last 15 years (2006–2021). Relevant sources were shortlisted and assessed by the two authors. Six sources met the criteria for inclusion in this review. In total, four educational programs are described and discussed. The results identify four sexuality and respectful relationship programs that met screening criteria: (1) “Telling it like it is!”, (2) “Sexual Lives and Respectful Relationships”, (3) “Talking about sex and relationships: the views of young people with learning disabilities”, and (4) “Health, Safety & Sexuality Training for You & Me”. Peer-educators experienced increased confidence and feelings of empowerment, while people without an intellectual disability reported a greater understanding of the challenges and experiences of people with a disability. The use of peer educators to deliver sexuality and respectful relationship education for people with intellectual disability is a promising education model with multiple potential benefits for participants. However, more research is needed to understand the consequences and limitations of such programs.

     

Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities

BackgroundActivity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities.Objective/hypothesisTo describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria.MethodsThe W-ADL was administered among four longitudinally studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome; and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0 = “does not do at all”, 1 = “does with help”, 2 = “independent”), and a standard set of criteria were used to evaluate its measurement properties.ResultsAcross the disability groups, Cronbach's alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally reported level of intellectual disability (mild, moderate, severe, profound).ConclusionsThe W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities.     

“I'm Healthy”: Construction of health in disability

BackgroundThe bio-mechanical view of medicine being disabled, implies unhealthiness because these states are not included in the physical and mental medical norms. This study is to show how people with physical disabilities define health and being healthy within a social framework and to demonstrate the impact of social environments on people with physical disabilities given their application of the social model and their process of social construction.ObjectiveThis study is to demonstrate that the meaning of health and the definition of oneself as healthy take place in a social-construction process involving an interaction between people and society.MethodsTo attain this goal, a qualitative technique was applied, and qualitative data were obtained. Terms were formed by encoding the data, and themes were formed using the terms. Analysis and interpretation were made based on 5 themes that emerged from the encoding of the research.ResultsThe qualitative data obtained in the research indicate that being healthy is equal to not being ill, that a disability does not imply unhealthiness for people with disabilities, and that people with physical disabilities interpret their physical adequacy and body images positively.ConclusionsThe results show that people with physical disabilities socially construct their states of being healthy and their states of health and interpret themselves as “healthy” despite the medical model's definition of health. The positive impact of this positive social construction of physical adequacy and body image is evident in their interpretations of themselves as healthy.     

Social determinants of health,emergency department utilization,and people with intellectual and developmental disabilities

BackgroundPeople with intellectual and developmental disabilities’ (IDD’s) health is largely dependent on the government services they receive. Medicaid managed care has emerged as one mechanism used to provide services to people with disabilities in an attempt to reduce costs. In managed care, there has been an emphasis on reducing emergency department visits and hospital admissions in an effort to reduce expenditures.ObjectiveThe purpose of this exploratory study was to examine the impact social determinants of health –“conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (n.p.)¹ – had on the emergency department utilization of people with IDD.MethodsWe had the following research question: what is the relationship between social determinants and emergency department utilization (visits) among adults with IDD? To explore this research question, a negative binomial regression analysis was used with secondary social determinant outcomes data (from Personal Outcome Measures®) and emergency department visit data from a random sample of 251 people with IDD. We also examined relationships with participants’ demographics.ResultsOur findings revealed for every one unit increase in the number of social determinant outcomes present, there was a 7.97% decrease in emergency department visits. There were also significant relationships between emergency department visits, and complex support needs, intellectual disability level, primary communication method, and residence type.ConclusionsSocial determinants are critical to promote the quality of life and health equity of people with IDD.     

The Invisibility of Young Homosexual Women and Men with Intellectual Disabilities

The aim of the article is to identify, describe and understand the opportunities and hindrances for young people with intellectual disabilities (ID) in expressing a variety of sexual expressions, such as homosexuality and bisexuality. The method is qualitative interviews with people with ID in the age of 16–27, staff members and parents. The study found young gay people with ID to be an invisible group, and that the possibilities to show a variety of sexual expressions are depending on the surroundings attitudes and behaviors toward them. Therefore it is important to teach about different sexualities in the sex education at special schools and also to do more research concerning homosexuality and bisexuality and intellectual disability, without having the heterosexual norm as a starting point.     

“The Things that are Inside of You are Horrible”: Children and Young Men with Duchenne Muscular Dystrophy Talk about the Impact of Living with a Long-term Condition

Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. We focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professionals. We explore possible reasons for the absence of discussion about these issues and reflect on the consequences for both the young person and their family. We suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored.     

Intellectual disability,challenging behaviour and cost in care accommodation: what are the links?

The paper examines the links between degree of intellectual disability, challenging behaviour, service utilisation and cost for a group of people with intellectual disabilities living in care accommodation in England. A cross-sectional survey was conducted of people with intellectual disabilities, identified via provider organisations, with supplementary collection of costs data. Multivariate analyses of cost variations were carried out for 930 adults with intellectual disabilities. There were strong, nonlinear, interdependent links between degree of intellectual disability, behaviour, service use and costs. Higher costs were associated with more severe intellectual disabilities and more challenging behaviour. Sector and scale of residence also influenced cost in quite complex ways. Access to and use of services by people with intellectual disabilities were not always appropriately linked to perceived or actual needs. Policy makers and local commissioning agencies need to explore the sources of cost variation between individuals, sectors and types of accommodation in order to achieve national policy objectives on quality, choice, independence and inclusion.     

A Desire for Love: Considerations on Sexuality and Sexual Education of People With Intellectual Disability in Poland

This article is intended to attract public attention to the fact that people with intellectual disability, despite their delayed sexual development, still remain sexual beings, which is connected with many individual and social consequences. The empirical data collected in this work provides knowledge about biological and psychological conditioning of sexual development of individuals with intellectual disability. However, the problem of sexuality for this population should be further analyzed. One should also think about the possibility of supporting the psychological and sexual development of people with more severe intellectual disability.     

Research contributions and implications

Distinguishing and characterizing the terms “chronic conditions” and “disability” is important to the quality of public health research. Research has documented that people with disabilities experience higher prevalences of chronic conditions than the general population; however, these differences are rarely attributable to the pre-existing disability, and instead likely stem from preventable environmental factors. In this paper we describe contributions from the research as well as the need for a paradigm shift to effectively address the unique public health needs of people with disabilities. In addition, we describe evidence of support for such a paradigm shift. We intend for this paper to invite discussion in the field about methods to elicit the changes necessary in public health research for improved policy and practice that better address the public health needs of people with disabilities.     

Specialists and Sexuality of Individuals with Disability

The article is a research report from a study on selected groups of specialists?? attitudes towards sexuality of people with intellectual and physical disabilities. 98 persons, including special educators, social workers, nurses and physiotherapists, completed semantic differentials of the author??s design. The Author??s own research concerned a broader meaning of sexuality taking into account its physical and psychosocial aspects. Sexual behavior, partnerships, contraception and sex education were among the concepts analyzed on the constructed differential. It was concluded that specialist respondents show more consent (stronger acceptance and more positive evaluation) to most aspects of sexuality of physically but not people with intellectual disabilities. Only sterilization is more accepted by them in relation to individuals with intellectual disability.     

Sexuality and Marriage of Women with Intellectual Disability in Male-Squeezed Rural China

Social attitudes towards sexual activity of people with intellectual disabilities (ID) are historically negative, though they are now improving. However, marriage and procreation are distinctly common for women with ID in rural China. Based on ethnographic research in a village in North China, this article explores the social aspects of sexuality and marriage for women with ID through three cases. The socioeconomic context of rural society makes marriage for women with ID possible primarily because of their female body and biological attributes of reproduction. Being socially constructed as the embodiment of reproduction, women with ID lose their autonomy and face multiple risks in their experience of sexuality and marriage. Starting from the social constructionist view on intellectual disability, this article also highlights the importance of integrating social aspects in further research on sexuality, marriage and other issues around people with ID.     

Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability

Although most people with intellectual disability remain under the lifelong care and support of their families, there is a hiatus in research that explores the sexuality of people with intellectual disability within the family setting. Little is known about how the responses of family caregivers align with a human rights approach to the sexuality of people with intellectual disability, particularly in the South African context. This study used a constructivist grounded theory approach to explore how 25 South African family caregivers responded to the sexuality of their young adults with intellectual disability. Findings revealed that family caregivers prioritise what they deem as being the immediate needs of themselves and the young adults, over the young adults’ rights to sexual autonomy. Practitioners, guided by the human rights approach, need to understand the individual and family context so as to better collaborate with family caregivers in supporting people with intellectual disability to realise their sexual rights. We apply two theories of needs to illuminate the conflict between needs-centred ethics and human rights approaches in a context where the family caregivers are the ones determining the sexuality needs of young adults with intellectual disability.     

Views of Mothers Having Children with Intellectual Disability Regarding Sexual Education: A Qualitative Study

This study was designed to evaluate the views of mothers having children with intellectual disability on sexual education for their children. Focused group methodology and in-depth interviews (face-to-face) were utilized for qualitative investigation. Interviews were performed with nine mothers having children with disability, aged 7–18 years registered at the “Education Practice Centre and Job Training Centre” from 2012 to 2013. Data was collected using a semi-structured questionnaire prepared by the researchers through screening. The questionnaire focused on the selection of sexual education. A voice-recording device was used during the interviews; face-to-face interviews were performed in a suitable physical environment without any voice recording. After they were given information about the study and voice recording the mothers’ verbal consents were obtained. In this study, it was found that all mothers having children with intellectual disability ignored the sexual education for their children with intellectual disability. All mothers, especially having a boy with intellectual disability, said that a sexual education was needed for their children, and they thought this education could be given by an institution like a rehabilitation centre. People generally thought that children with intellectual disability would not have a sexual life, family planning was thought to be unnecessary to be involved in sexual education, they were scared that their children would be sexually abused and therefore kept them away even from their healthy siblings. These findings are thought to be a guide for nurses, rehabilitation centres and schools working with children with intellectual disability to prioritize the sexual education of these children, raise awareness in families and children on this subject and enable them to sustain their healthy sexual developments and protect them from possible danger.     

Caring for independent lives: geographies of caring for young adults with intellectual disabilities

This paper engages with the emerging disciplinary clash between 'care' and 'independence' within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are 'caught-in-the-middle' between their 'duty' to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.     

Suicidal Ideation and Behaviour among Young People Leaving Care: Case-file Survey

Self-harming and suicide amongst adolescents are reported to be increasing in Europe and internationally. For young people in state care, this aspect of mental well-being is of particular concern. The aim of this study was to establish the incidence of suicidal ideation and behaviour amongst young people (age 16–21 years) leaving state care in one health and social care trust in Northern Ireland, and to explore the correlation between this and client risk factors that might inform professional practice. Data were gathered from 164 case files of the total 215 (response rate 76%) in relation to all open cases as of 30 April 2012 extracted by the relevant social workers through the use of a standard data collection tool. Twenty-seven per cent of young people known to the 16+ Teams engaged in self-harm or suicidal behaviour. There was a strong correlation between the number of self-harm incidents and the number of suicide attempts. The risk factors identified were consistent with the research base: “male”, “unemployed”, “alcohol and drug misuse”, “adverse childhood experiences”, “higher number of placement moves” “placement type” and “older age when entering care”. Young people in more isolated placements seemed particularly at risk. The results of this study are of particular relevance to social workers and other professionals working with young people leaving state care.     

The burden of proof: The process of involving young people in research

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.     

Family support and intergenerational caregiving: report from the State of the Science in Aging with Developmental Disabilities Conference

BackgroundThis article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the “State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living” symposium.ObjectivesThe aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers.MethodsKey issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices.ResultsThe group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks.ConclusionThe outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.