Creating and Enabling a Sustainable Livelihood for Persons with Intellectual Disabilities: A Comparative Case Study of Ghana and Canada.

Abstract Despite the plethora of published studies on rights, including employment rights, for persons with intellectual disabilities (Hatton, 2002; Tarulli, et al., 2004; Ward & Stewart, 2008), relatively few have discussed their applicability to individuals with intellectual disabilities to facilitate their full involvement in socio-economic development. This study explored the mechanisms facilitating and inhibiting the full participation of persons with intellectual disabilities in the area of employment through a comparative case analysis of policies and practices in Ontario, Canada (a developed country) and in Ghana (a developing country) both of which are signatories to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The study employed targeted recruitment based on the nature of the research which is a combination of policy and practice investigation.

La inclusión social y laboral de las personas con discapacidad intelectual mediante los programas de empleo con apoyo : un reto para la Orientación. 'Social and labour inclusion of people with intellectual disability through supported employment programs : a challenge for guidance'.

Resumen tomado de la publicación. Con el apoyo económico del departamento MIDE de la UNED

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Family impact (or family burden) is a concept born in the field of mental health that has successfully been exported to the ambit of intellectual disability (ID). However, differences in family impact associated with severe mental health disorders (schizophrenia), to ID or to mental health problems in ID should be expected. Seventy-two adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshops and vocational employment programmes in Madrid (Spain), 203 adults diagnosed with schizophrenia from four Spanish Community Mental Health Services (Barcelona, Madrid, Granada and Navarra) and 90 adults with mental health problems in ID (MH-ID) from the Parc Sanitari Sant Joan de Déu Health Care Site in Sant Boi de Llobregat, Barcelona (Spain) were asked to participate in the present study along with their main caregivers. Family impact experienced by caregivers was assessed with the ECFOS-II/SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva/Objective and Subjective Family Burden Interview). In global terms, results showed that the higher family impact was found between caregivers to people with MH-ID. The interaction of both conditions (ID and mental health problems) results in a higher degree of burden on families than when both conditions are presented separately. There was also an impact in caregivers to people with schizophrenia, this impact being higher than the one detected in caregivers to people with intellectual disability. Needs of caregivers to people with disability should be addressed specifically in order to effectively support families.

The Multi-Faceted Experience of Empathy in Intellectual Disability Settings: An IPA Study

This research thesis explored the concept of empathy. The specific purpose was to further understand the idea of empathy in relation to the experience of male support workers who provide residential care to adults with intellectual disabilities (ID) and challenging behaviour. The thesis aimed to provide some insights into how support workers develop and extract meaning from their experiences of relationships with clients and the impact of this on their own self-care, namely, self-compassion. Since personal accounts of experience were required, a qualitative methodology was employed, Interpretative Phenomenological Analysis (IPA) (Smith, 2004). This methodology was selected as it allows for the exploration and interpretation of idiographic lived experience and meaning making. 8 experienced support workers were interviewed using a semi structured interview. Four superordinate themes emerged from the data. These included: 1. Making sense of the others inner world; 2. Processes that enhance empathic practice; 3. Tensions and conflicts, and 4. Management of distressing feelings. Differing accounts of interpreting the needs of clients were identified which helped participants understand, make sense of their interpersonal experience and participate in their role. These included utilising academic knowledge and senses, particularly sight and hearing, which were seemingly complemented by a level of reflective practice. Additionally, to make sense of the experience of a client, they appeared to put themselves in their position, suggesting a form of empathy. Participants appeared to engage in a process of reflection on their relationships with clients, which helped them think about what they had learned about the person’s needs, moreover, this process enabled them to identify some of their own responses and feelings. However, participants seemed to struggle to recognise the occurrence or impact of distressing emotional experience and to express their feelings, possibly in response to a deep sense of responsibility and fear of transferring emotional distress to others. This dilemma of holding two potentially conflicting views of experience seemed to inhibit self-compassion. Although not specifically testing theories of empathy, from the overall findings, it could be suggested that empathy may be a dynamic, transient process that is influenced by reflexivity, values and context. The context in which participants discussed their practice, and situated within their accounts, suggested a sense of confusion and uncertainty. Consequently, it is suggested this impacted on how participants understood and related to clients, and to themselves. There were some specific implications for Counselling Psychology practice, mostly concerning training and supervision. These included recommendations for staff training and supervision, systemic organisational intervention, policy development, recommendations for revisions to models of specialist care frameworks and clinical training.

Interface Between Intellectual Disability And Mental Health: Hermeneutic Review.

A literature review was conducted aiming to understand the interface between the Intellectual Disability and Mental Health fields and to contribute to mitigating the path of institutionalizing individuals with intellectual deficiencies. The so-called dual diagnosis phenomenon remains underestimated in Brazil but is the object of research and specific public policy internationally. This phenomenon alerts us to the prevalence of mental health problems in those with intellectual disabilities, limiting their social inclusion. The findings reinforce the importance of this theme and indicate possible diagnostic invisibility of the development of mental illness in those with intellectual disabilities in Brazil, which may contribute to sustaining psychiatric institutionalization of this population. 

X-linked myoclonic epilepsy with spasticity and intellectual disability - Mutation in the homeobox gene ARX

Objective: To describe a new syndrome of X-linked myoclonic epilepsy with generalized spasticity and intellectual disability (XMESID) and identify the gene defect underlying this disorder. Methods: The authors studied a family in which six boys over two generations had intractable seizures using a validated seizure questionnaire, clinical examination, and EEG studies. Previous records and investigations were obtained. Information on seizure disorders was obtained on 271 members of the extended family. Molecular genetic analysis included linkage studies and mutational analysis using a positional candidate gene approach. Results: All six affected boys had myoclonic seizures and TCS; two had infantile spasms, but only one had hypsarrhythmia. EEG studies show diffuse background slowing with slow generalized spike wave activity. All affected boys had moderate to profound intellectual disability. Hyperreflexia was observed in obligate carrier women. A late-onset progressive spastic ataxia in the matriarch raises the possibility of late clinical manifestations in obligate carriers. The disorder was mapped to Xp11.2-22.2 with a maximum lod score of 1.8. As recently reported, a missense mutation (1058C>T/P353L) was identified within the homeodomain of the novel human Aristaless related homeobox gene (ARX). Conclusions: XMESID is a rare X-linked recessive myoclonic epilepsy with spasticity and intellectual disability in boys. Hyperreflexia is found in carrier women. XMESID is associated with a missense mutation in ARX. This disorder is allelic with X-linked infantile spasms (ISSX; MIM 308350) where polyalanine tract expansions are the commonly observed molecular defect. Mutations of ARX are associated with a wide range of phenotypes; functional studies in the future may lend insights to the neurobiology of myoclonic seizures and infantile spasms.

Social adaptation of children with mild intellectual disability: Effects of partial integration within primary school classes

is study examined the social adaptation of children with mild intellectual disability who were either (a) partially integrated into regular primary school classes, or (b) full-time in separate classes, All of the children were integrated in sport and play activities with the whole school. Consistent with previous research, children with intellectual disability were less socially accepted than were a matched group of control children. Children in partially integrated classes received more play nominations than those in separate classes, brit there was no greater acceptance as a best friend. On teachers' reports, disabled children had higher levels of inappropriate social behaviours, but there was no significant difference in appropriate behaviours. Self-assessments by integrated children were more negative than those by children in separate classes, and their peer-relationship satisfaction was lower. Ratings by disabled children of their satisfaction with peer relationships were associated with ratings of appropriate social skills by themselves and their teachers, and with self-ratings of negative behaviour. The study confirmed that partial integration can have negative consequences for children with an intellectual disability.

An analysis of accommodation needs of adults with an intellectual disability in Toowoomba and surrounding areas

Introduction The objective of this study was to analyse the accommodation needs of people with intellectual disability over the age of 18 years in Toowoomba and contiguous shires. In 2004, a group of carers established Toowoomba Intellectual Disability Support Association (TIDSA) to address the issue of the lack of supported accommodation for people with intellectual disability over the age of 18 and the concerns of ageing carers. The Centre for Rural and Remote Area Health (CRRAH) was engaged by TIDSA to ascertain this need and undertook a research project funded by the Queensland Gambling Community Benefit Fund. While data specifically relating to people with intellectual disability and their carers are difficult to obtain, the Australian Bureau of Statistics report that carers of people with a disability are more likely to be female and at least 65 years of age. Projections by the National Centre for Social and Economic Modelling (NATSEM) show that disability rates are increasing and carer rates are decreasing. Thus the problem of appropriate support to the increasing number of ageing carers and those who they care for will be a major challenge to policy makers and is an issue of immediate concern. In general, what was once the norm of accommodating people with intellectual disability in large institutions is now changing to accommodating into community-based residences (Annison, 2000; Young, Ashman, Sigafoos, & Grevell, 2001). However, in Toowoomba and contiguous shires, TIDSA have noted that the availability of suitable accommodation for people with intellectual disability over the age of 18 years is declining with no new options available in an environment of increasing demand. Most effort seemed to be directed towards crisis provision. Method This study employed two phases of data gathering, the first being the distribution of a questionnaire through local service providers and upon individual request to the carers of people with intellectual disability over the age of 18. The questionnaire comprised of Likert-type items intended to measure various aspects of current and future accommodation issues. Most questions were followed with space for free-response comments to provide the opportunity for carers to further clarify and expand on their responses. The second phase comprised semi-structured interviews conducted with ten carers and ten people with intellectual disability who had participated in the Phase One questionnaire. Interviews were transcribed verbatim and subjected to content analysis where major themes were explored. Results Age and gender Carer participants in this study totalled 150. The mean age of these carers was 61.5 years and ranged from 40 – 91 years. Females comprised 78% of the sample (mean age = 61.49; range from 40-91) and 22% were male (mean age = 61.7 range from 43-81). The mean age of people with intellectual disability in our study was 37.2 years ranging from 18 – 79 years with 40% female (mean age = 39.5; range from 19-79) and 60% male (mean age = 35.6; range from 18-59). The average age of carers caring for a person over the age of 18 who is living at home is 61 years. The average age of the carer who cares for a person who is living away from home is 62 years. The overall age range of both these groups of carers is between 40 and 81 years. The oldest group of carers (mean age = 70 years) were those where the person with intellectual disability lives away from home in a large residential facility. Almost one quarter of people with an intellectual disability who currently live at home is cared for by one primary carer and this is almost exclusively a parent.

Beyond sex and cooking: Health education for individuals with intellectual disability

Issues of health education programming for people with intellectual disability are discussed. As environments in which such individuals live become more inclusive, and they are encouraged to make their own choices, the issue of whether current health education is sufficient to enable them to make healthy life choices is considered. More attention should be focused on programs in schools and the community to fulfill this need. Three aspects of health education programming are considered: physical activity, general health knowledge, and social supports for health. Continuity of information is viewed as important in policy development as well as in interprofessional coordination and cooperation to assure that these individuals are not further handicapped by poor health.

Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: a pilot study

International research has demonstrated significant shortcomings in the health of adults with intellectual disability (ID). Because general practitioners (GPs) are the main providers of primary healthcare for this population, strategies to improve general practice care are an important aspect of rectifying these shortcomings. The present pilot study aimed to determine the effect of various interventions on health maintenance activities and to assess their acceptability to GPs, with a view to informing larger scale studies. The GPs were recruited through an earlier questionnaire-based postal survey. The GPs identified all their adult patients with ID, then obtained consent for participation from three patients randomly selected by the investigators. The GPs completed two self-evaluation forms and case note audits 12 months apart, read a synopsis of the relevant literature provided by the researchers, and completed a comprehensive health assessment (CHA) of their three patients. Forty-five GPs agreed to participate in the CHA programme (CHAP), and 15 completed the project. Thirty-eight patients completed the project. The number of patient-GP dyads who completed the project was too small to demonstrate statistically significant changes in health issues over time. The GPs found that the synopsis of the literature was the best intervention for increasing knowledge and was also the most practical to use in general practice. The CHAP was the intervention that prompted the most action from the GP which would not have been undertaken otherwise. The CHAP appeared to provide a superior review process compared to the other interventions used in the present study. The numbers of health maintenance activities found to be overdue and the number of health issues detected as a result of the process were considerable. The CHAP served as a communication tool and an educative instrument, providing a basis for future studies and strategies to improve the general practice care of adults with ID.

Nonverbal narratives: Listening to people with severe intellectual disability

This article describes an exploratory study that examined the perspectives of practitioners who spend much of their working day listening to and in some ways interpreting for people with severe intellectual disabilities. On the basis of focus group interviews with 23 professional disability-sector workers, including speech therapists, psychologists, and human service workers, the article reports on the importance of a practitioner's values and experience in successful interactions with individuals who rely on self-developed nonsymbolic communication repertoires. The article includes a discussion of the likelihood of including individuals with severe intellectual disabilities in narrative research.

Social competence and peer interactions of students with intellectual disability in an inclusive high school

This paper reports descriptive information on the relationship between social competence and the amount and type of peer interaction for nine adolescents with intellectual disability attending a regular high school. Each adolescent's social competence was assessed using the AAMR Adaptive Behavior Scale-School (2nd edn) (ABS-S:2). Naturalistic observations were conducted to obtain information on the amount and type of peer interaction. Data were analysed to determine the relationship between social competence and peer interactions. Social competence was not consistently correlated with the amount of peer interaction. Results from the naturalistic observations showed individual differences in patterns of peer interaction with a tendency towards more frequent interactions with peers who also had intellectual disabilities. These data suggest that social competence did not significantly influence the amount and type of peer interaction. Implications for facilitating peer interactions between adolescents with and without intellectual disability are discussed.