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.

Height discordance in monozygotic females is not attributable to discordant inactivation of X-linked stature determining genes

We tested the hypothesis that X-linked genes determining stature which are subject to skewed or non-random X-inactivation can account for discordance in height in monozygotic female twins. Height discordant female monozygotic adult twins (20 pairs) were identified from the Australian Twin Registry, employing the selection criteria of proven monozygosity and a measured height discordance of at least 5 cm. Differential X-inactivation was examined in genomic DNA extracted from peripheral lymphocytes by estimating differential methylation of alleles at the polymorphic CAG triplet repeat of the Androgen receptor gene (XAR). There were 17/20 MZ pairs heterozygous at this locus and informative for analysis. Of these, 10/17 both had random X-inactivation, 5/17 showed identical X-inactivation patterns of non random inactivation and 2/17 (12%) showed discordant X-inactivation. There was no relationship between inactivation patterns and self-report chorionicity. We conclude that non-random X-inactivation does not appear to be a major contributor to intra-pair height discordance in female MZ twins.

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.

X-linked neonatal diabetes mellitus, enteropathy and endocrinopathy syndrome is the human equivalent of mouse scurfy

To determine whether human X-linked neonatal diabetes mellitus, enteropathy and endocrinopathy syndrome (IPEX; MIM 304930) is the genetic equivalent of the scurfy (sf) mouse, we sequenced the human ortholog (FOXP3) of the gene mutated in scurfy mice (Foxp3), in IPEX patients. We found four non-polymorphic mutations. Each mutation affects the forkhead/winged-helix domain of the scurfin protein, indicating that the mutations may disrupt critical DNA interactions.

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.

Mutations in the human ortholog of Aristaless cause X-linked mental retardation and epilepsy

Mental retardation and epilepsy often occur together. They are both heterogeneous conditions with acquired and genetic causes. Where causes are primarily genetic, major advances have been made in unraveling their molecular basis. The human X chromosome alone is estimated to harbor more than 100 genes that, when mutated, cause mental retardation(1). At least eight autosomal genes involved in idiopathic epilepsy have been identified(2), and many more have been implicated in conditions where epilepsy is a feature. We have identified mutations in an X chromosome-linked, Aristaless-related, homeobox gene (ARX), in nine families with mental retardation (syndromic and nonspecific), various forms of epilepsy, including infantile spasms and myoclonic seizures, and dystonia. Two recurrent mutations, present in seven families, result in expansion of polyalanine tracts of the ARX protein. These probably cause protein aggregation, similar to other polyalanine(3) and polyglutamine(4) disorders. In addition, we have identified a missense mutation within the ARX homeodomain and a truncation mutation. Thus, it would seem that mutation of ARX is a major contributor to X-linked mental retardation and epilepsy.

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.

Diagnosis of Helicobacter pylori infection in adults with intellectual disability

Helicobacter pylori infection is common among adults with intellectual disability. The acceptabilities and accuracies of different diagnostic tests in this population are unknown. We aimed to determine (i) patient acceptability and (ii) performance characteristics of serology, fecal-antigen, and urea breath tests among adults with intellectual disability. One hundred sixty-eight such adults underwent H. pylori testing with serology and fecal-antigen tests, and a portion underwent treatment. One year later, the participants were retested with fecal-antigen, serology, and urea breath tests. The numbers of specimens obtained and difficulties in collection reported by caregivers were noted. Test performance characteristics were assessed among participants and 65 of their caregivers, using serology as the reference. All participants provided at least one specimen, despite reported collection difficulties for 23% of fecal and 27% of blood specimens. Only 25% of the participants provided breath specimens; failure to perform this test was associated with lower intellectual ability and higher maladaptive behavior. The sensitivity, specificity, and positive and negative predictive values of the fecal test (baseline and 12 months versus caregivers) were 70 and 63 versus 81, 93 and 95 versus 98, 96 and 92 versus 93, and 53 and 74 versus 93%, respectively; those of the urea breath test (12 months versus caregivers) were 86 versus 100, 88 versus 95, 75 versus 89, and 94 versus 100%, respectively. With assistance, fecal or blood specimens for H. pylori assessment can be provided by most patients with intellectual disability regardless of their level of function or behavior. Only those with greater ability can perform the urea breath test. Using serology as the reference test, the limitations of performance characteristics of the fecal-antigen and urea breath tests are similar to those among a control group of caregivers.

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.