Service Use Patterns by Children With Down Syndrome in a Canadian Region.

Children with Down syndrome require services from different sectors over time to optimize health and development, however, there is little information on longitudinal, cross-sector service use. Parents of children with Down syndrome attending a Canadian children's hospital participated in semistructured interviews covering life-time multiple sector service use. Five key service patterns were identified: (1) primary care physicians playing a circumscribed role; (2) a marked shift in public habilitative service receipt from development agencies in the preschool years to exclusive school delivery after school entry; (3) families obtaining private services to address gaps from public sector services; (4) a prominent role for parents to identify additional services; and (5) service variability as a function of timing and severity of medical comorbidity.

Accessibility of child protection investigations during pandemic: A qualitative analysis of court proceedings.

BACKGROUND: Qualitative research using published court records to examine contextual factors that contribute to child protection decisions in cases involving parents with intellectual disabilities is limited, particularly during the COVID-19 pandemic. METHOD: The present study conducted qualitative content analysis on 10 published Ontario court cases to study child protection decision-making between 2019 and 2021. RESULTS: The findings corroborated previous literature with nine out of 10 cases resulting in loss of child custody. Four major themes emerged from content analysis: (1) Impact of COVID-19 pandemic on cases; (2) Systemic barriers to accessibility; (3) Attitudes and bias toward parents with intellectual disabilities; and (4) Ultimate reliance on intellectual disability status for final custody decision. CONCLUSIONS: Conducting content analysis on published court cases is useful in learning about accessibility barriers for parents with intellectual disabilities and may help in understanding the impact of the COVID-19 pandemic on the child protection system.

Judicial Reliance on Parental IQ in Appellate-Level Child Welfare Cases Involving Parents with Intellectual and Developmental Disabilities.

BACKGROUND: Parents with intellectual and developmental disabilities (IDDs) are over-represented in child welfare cases. Although IQ per se is an invalid indicator of parenting abilities, this study examined the prevalence of judicial consideration of parental IQ test evidence in US appellate cases. METHODS: The present authors conducted Boolean searches of Westlaw Corporation's case database since 1999. The present authors used a six-question checklist to survey the 42 most recent American appellate cases involving termination of parental rights (TPR) decisions that included evidence of parental intellectual and developmental disabilities based on IQ. RESULTS: In 86% of cases, parental low IQ was presented as a barrier to parenting competence. Higher courts uphold TPR decision in 81% of cases involving parents with intellectual and developmental disabilities. CONCLUSIONS: Parental IQ scores are routinely relied upon to judge parenting capacity in custody cases where parents have intellectual and developmental disabilities. The present authors recommend more comprehensive assessments examining a broader range of contextual variable that may impact on parenting abilities.

Adults with Fetal Alcohol Spectrum Disorder: Factors Associated with Positive Outcomes and Contact with the Criminal Justice System.

BACKGROUND: Adults with FASD are at increased risk for contact with the criminal justice system (CJS). To date, there has been limited research devoted to development of supports for adults with FASD and it is unclear what supports are required to improve outcomes and reduce CJS contact. OBJECTIVES: To examine the services and supports experienced by a small group of adults with FASD living in both rural and urban locations in Ontario, and their contact with the CJS. METHODS: A sample of 14 individuals with FASD and 11 support persons participated in the study. Semi-structured interviews were conducted and coded according to key themes which were qualitatively analysed using quotations that supported each key theme. A reliability analysis was conducted for the interview coding. RESULTS: Early diagnosis and lower substance use were found to be factors associated with reduced contact with the CJS. Participants reported on: knowledge of their diagnosis and caregiver training and education about FASD; interdependence; routine, structure, and supervision; evidence of a strength-based approach; effective communication; and collaborative services. Few participants had received training and education around FASD and further research is needed to determine the training required for more successful interventions and outcomes. CONCLUSION: As has been found previously, early diagnosis of FASD is associated with more positive outcomes including reduced amount of contact with the CJS. It is likely that early diagnosis leads to the receipt of more supports throughout childhood and contributes to a better understanding of FASD by family and caregivers.

Randomized Control Trial of the 3Rs Health Knowledge Training Program for Persons with Intellectual Disabilities.

BACKGROUND: Persons with intellectual disabilities (ID) experience a wide range of health problems. Research is needed on teaching persons with intellectual disabilities about their health to promote self-advocacy. This study used a RCT to evaluate a health knowledge training program for adults with intellectual disabilities and verbal skills. METHODS: Participants were randomly assigned to training (n = 12) or no training control (n = 10) groups. Topics included key body organs, systems, functions, health maintenance and illnesses. Participants played a game answering questions (e.g. 'What does the heart do?'). Instruction involved visuals (e.g., PowerPoint slides), cueing, modelling and feedback. The control group received pre-, post- and follow-up tests as the training group. RESULTS: The training group had significantly higher overall post-test and follow-up health knowledge test scores than the control group. CONCLUSIONS: Health knowledge training is one step in promoting health self-advocacy and better health in persons with intellectual disabilities.