Journal on Developmental Disabilities

In this paper we address the intersection of Aboriginal, developmental disability, and child welfare status, in the lives of children identified as having all three of these labels. Disability and child welfare status, like race, are understood as a form of social oppression and institutional discrimination located in social processes and historical contexts as opposed to individual pathology. Many commonalities exist in the histories of Aboriginal people and people with developmental disabilities - experiences of oppression, marginalization, institutionalization, devaluation, and denial of human rights. In the contemporary picture, child welfare services have come to play an important role in the lives of Aboriginal children and children with developmental disabilities. Research indicates that both groups of children are over-represented in child welfare services. Higher rates of maltreatment are indicated to be a factor, as are social, political, economic and attitudinal issues. Aboriginal people typically experience a number of risk factors for both disability and for child welfare involvement. The intersectionality of Aboriginal, disability, and child welfare status, represents a very particular experience, of which little is known. As a group, the experiences and needs of children with all three labels have remained largely invisible to the majority culture and also within disability, child welfare, and Aboriginal research and discourse.

A secondary analysis of the 2001 national data from the Canadian Incidence Study of Reported Child Abuse and Neglect (CIS) is utilized to explore and contrast the maltreatment experiences of Aboriginal children with and without developmental delays reported to child protection services. Both the extent and the typologies of maltreatment for these two groups of children are investigated. In addition, characteristics of the child, the alleged perpetrators, and socio-economic conditions of the child and her/his family are reported. A review of relevant literature reveals a notable dearth of information in this area despite the overwhelming number of Aboriginal children and children with disabilities in receipt of child welfare services. This analysis is a preliminary attempt to address this void and to identify areas for future research.

"... it was a terrible thing for us... any family who has a child who's disabled, it can destroy a family or it can make them closer... they make you work so much harder." (Parent of a deceased child with a disability) "I feel I'm absorbing more ... special qualities of others. I could say that I'm so busy, but [my brother] gives me a touch of reality... [he] gets me to think more and maybe that's what others do too. If they can just stop and think sometimes of what others can offer..." (Parent of an adult child with a disability, and caregiver of a sibling with a disability)

This paper describes issues related to cross-cultural measurement, and the assessment of Aboriginal people. We discuss clinical implications as well as suggestions for competing assessments with different cultural groups. The issues described can be generalized to the measurement and assessment of Aboriginal people across the entire mental measurement spectrum. Much of the discussion however, will be focussed on the measurement of cognitive ability and reviewing an established literature on the shortcomings of cognitive ability assessment amongst culturally diverse groups. Special care should be taken during the assessment procedure and when interpreting Aboriginal people's scores. Culture can have significant impact on the performance of a minority group on an instrument designed and standardized within the majority culture.

Methylmercury is a potent neurotoxin found at elevated concentrations in both the Arctic ecosystem and tissues of the local Aboriginal inhabitants. Combined studies of ecological contamination with the possible implications for human health, have made this one of the largest environmental research projects in Canadian history. Recent scientific advances have revolutionized the understanding of the global mercury cycle. The major source of mercury exposure is through the consumption of locally derived food sources. Mercury tissue concentrations are reaching alarming levels in some Aboriginal communities. Studies on both animals and humans have provided compelling evidence suggesting that methylmercury contamination induces neurological defects. Cognitive defects have been noted in children exposed congenitally in several other seafood-consuming communities around the world. Defects in motor function have been observed in both adults and children in Inuit Communities. Furthermore, environmental mercury has been linked to both autism and Alzheimer disease. Aboriginals are currently exposed to methylmercury in addition to several other environmental toxins. This may have serious repercussions for neurodevelopment and health in this population.

Persons with moderate to severe developmental disabilities are at risk for low-trauma fractures but the associated risk factors have not been well-delineated. A chart review of 224 persons with developmental disabilities living in a residential care facility found that 40 (18%) had sustained 47 low-energy fractures of the appendicular skeleton. Logistic regression demonstrated a strong association between Aboriginal ethnicity and fractures that was not accounted for by other measured variables (adjusted odds ratio [OR] 3.03, 95% CI 1.38-6.69). Phenobarbital use was also a strong independent predictor (OR 2.69, 95% CI 1.18-6.12). The recognition of the high rate of fractures in this population as well as these risk predictors may help to direct screening and targeted interventions for those found to be at highest risk.

In pregnancy, there is an inevitable sharing of maternal nutrients through transport via the placenta. Changes in the maternal system affect the fetal plasma composition and thus the development of fetal organs. Alterations in the fetal environment that affect fetal development have been hypothesized to have consequences in postnatal life. Maternal diabetes, which is associated with high blood glucose levels (hyperglycemia), is one such compromising environment; excess glucose is shunted into the fetal system which then must make adaptations to the altered environment. This results in a variety of fetal, neonatal, and postnatal consequences for the offspring of diabetic mothers including very large size at birth, birth defects, various short-term and long-term complications, and harmful effects on the brain. This review is aimed at summarizing the effects of maternal diabetes on her offspring, with a focus on long-term effects in the brain. Neuropsychological deficits in intelligence and memory, psychomotor development and sensory functions, as well as attention and hyperactivity, have been shown to be associated with maternal diabetes in the literature. However, with tightly controlled blood glucose levels, these outcomes have the potential to be minimal consequences of maternal diabetes. Unfortunately, some segments of the population do not have adequate control of their blood sugar level, and are still exposed to effects of hyperglycemia. One such population is our First Nations people who have experienced epidemic-like increases in type 2 diabetes in the past 20 years. Due to barriers in treatment of this population, they are still at risk for the more severe consequences of uncontrolled diabetes, including those consequences for infants born to diabetic mothers. There has been both a national and an international drive to find solutions to this problem, as well as a critical look into treatments and prevention regimes, for the general population and for Aboriginal populations.

Commercially-available infant formulae are designed to provide infants with the same nutritional value as breast milk; however, there are many biological components (i.e., maternally-derived antibodies) that cannot be reproduced. There is evidence in the literature to support the hypothesis that feeding with breast milk provides benefits to the infant in terms of development and cognitive outcome. The most studied components of breast milk are the long-chain polyunsaturated fatty acids, specifically docosahexaenoic acid (DHA) and arachidonic acid (AA). These non-essential fatty acids have been shown to provide a measurable advantage to breast-fed infants over their formula-fed counterparts on childhood scales of cognitive development. Recently, DHA and AA were approved as additives to infant formulae in North America. Breast milk also contains a number of growth factors and hormones that are known to have neural developmental effects, but these effects have not been quantified on behavioural scales. There are also still many more unidentified components of breast milk. Efforts to educate and encourage the feeding of breast milk over infant formulae are underway from the community to international level, with the World Health Organization publishing guidelines on the optimal duration for breastfeeding. It should be noted that there are certain advantages of some formulae over breast milk, most significantly the fact that formulae contain no contaminants (i.e., medications and their metabolites) from the maternal diet.

Editors Note: As recipient of the 2005 OADD-RSIG Professional Award for Excellence in Research, and Friday morning keynote speaker at the 2005 Annual OADD conference, Adrienne Perry spoke about the importance of evidence-based practice in the field of developmental disabilities. This is a summary of that keynote address.

Suzanne Hurding and James Lyons

In Ontario, the inclusion of students with special needs in regular classrooms is a reality for many students (Government of Ontario, 2004). According to 2003-2004 school board data, 61,701 elementary and 65,692 secondary school students received special education programs and/or services in a regular classroom. An additional 15, 438 identified elementary students and 6,895 identified secondary students spent up to 50% of their time in a regular classroom. ...

In this paper, we review challenges encountered when utilizing clinical data collected from non-specialists about persons with intellectual disabilities and psychiatric disorders. We draw on our experience with a dataset of adult inpatients and outpatients drawn from the nine psychiatric hospitals in Ontario (see Lunsky et al., 2003). First we discuss the problem of identifying patients with intellectual disabilities based on standard information collected in hospitals. Many hospitals categorize their patients by primary or secondary diagnosis only, so that a co-existing intellectual disability may or may not be recorded. Then we discuss problems related to the accuracy of psychiatric diagnoses made by individuals with limited training with the population. We found major differences in diagnostic patterns between specialized dual diagnosis programs and more generic programs. We conclude the paper with the argument that it is important to study dual diagnosis not just within the population of persons with intellectual disabilities but also within the broader mental health system. Doing so, however, can lead to problems as such data has its limitations.

Aggression in people with a dual diagnosis is very challenging for service providers in community and clinical settings. The purpose of this paper is to review concerns expressed by community service providers and hospital staff regarding aggression displayed by the adults with developmental disabilities that they support. Findings are based on input received during province-wide focus groups on dual diagnosis in Ontario's psychiatric hospitals. The two most significant themes that emerged regarding aggression were: client aggression frequently leads to hospitalization, and, once in hospital, aggression prevents clients from being transferred back to community-based services. This paper concludes with participants' recommendations for the potential role of developmental services in dealing with aggression.

For learning in children with autism to be effective, a strong, unique, child-centered relationship between the Instructional Therapist (IT) and the child must be present. In essence, the attachment that the IT shares with the child must be nurturing in nature. An examination of the value of job satisfaction may be a promising avenue to pursue in order to cultivate environments that boost child-IT relationships and the overall quality of learning in children with autism. In this pilot study it is hypothesized that a positive correlation exists between job satisfaction of the IT and the level of learning in the child with autism. A total of 10 ITs completed the Job Satisfaction Index. Their scores were correlated with the scores of 10 Intensive Behavioural Intervention (IBI) sessions with 7 children with autism. Length of employment of ITs were also analyzed. ITs, on average, scored in the medium range on job satisfaction, while children with autism scored in the medium range on their IBI data scores. Data on the length of employment shows that the majority of ITs have been employed between one to seven months. The results of this study do not support the hypothesis but show that different questions need to be asked to assess what accounts for differential IT satisfaction scores and learning levels for children with autism. This paper hopes to initiate discussions about how to improve the quality of IBI from an intensive interaction standpoint between the child with autism and the IT.

The treatment of challenging behaviour and psychiatric disorders in adults with autism spectrum disorder (ASD) is particularly difficult. Most severe presentation are especially stressful to caregivers in the community and may lead to hospitalization even though the resulting change in routine and loss of caregivers can be severely detrimental to the patient. This paper reports on the results of a review of all inpatient admissions of clients with ASD to a specialized Dual Diagnosis Program over a six year period. Demographic characteristics, information on reasons for referral, comorbid diagnoses, length of hospitalization, barriers to discharge and discharge placement as well as rates that hospitalization poses for this group of vulnerable clients.