Family Futures Planning : training, support, and advocacy program for adults with developmental disabilities and their families : family member's manual /

"Funded by: Illinois Council on Developmental Disabilities, Chicago Association for Retarded Citizens, Rehabilitation Research Training Center on Aging and Developmental Disabilities (National Institute on Disability and Rehabilitation Research Grant #H133B980046) in the Department of Disability and Human Development at the University of Illinois at Chicago."

Helping families understand options in planning for their family member with a disability.

"This manual was funded through a grant from the Illinois Council on Developmental Disabilities"

Programs for individuals with developmental disabilities.

Includes a directory of agencies and organizations providing services to individuals with developmental disabilities in Illinois.

Residential and lifestyle changes for adults with an intellectual disability in Queensland 1960-2001

As we celebrate 50 years of the Schonell Special Education Research Centre it is timely to consider changes that have occurred in the provision of residential services for people with an intellectual disability. Before the 1970s adults and children were cared for in large institutions using a medical model of care. In the mid-1970s a new developmental model based on education and training was implemented in response to the principle of normalisation and issues of social justice. The most dramatic changes have occurred in the last ten years with the decision to close large institutions and relocate residents into ordinary homes in the community. This paper describes changes in lifestyle for adults with an intellectual disability as a result of the move from institutional to community residential service provision. The Challinor Centre in Ipswich, Queensland, Australia provides examples of lifestyle changes that have occurred under different models of service provision during this time. Community living is described with research evidence validating the advantages of this type of service provision for residents with an intellectual disability. Outcomes have been documented through the use of group results and a case study of one individual following deinstitutionalisation describes the benefits of this new model of residential accommodation

Examining Cognitive Processing in Children with an Arithmetic Disability

Currently there is no consensus as to the specific cognitive impairments that characterize mathematical disabilities (MD) or specific subtypes such as an arithmetic disability (AD). The present study sought to address this concern by examining cognitive processes that might undergird AD in children. The present study utilized archival data to conduct two investigations. The first investigation examined the executive functioning and working memory of children with AD. An age-matched achievement-matched design was employed to explore whether children with AD exhibit developmental lags or deficits in these cognitive domains. While children with AD did not exhibit impairments in verbal working memory or colour word inhibition, they did demonstrate impairments in shifting attention, visual-spatial working memory, and quantity inhibition. As children with AD did not perform more poorly than their younger achievement-matched peers on any of these tasks, impairments in specific areas of executive functioning and working memory appeared to reflect a developmental lag rather than a cognitive deficit. The second study examined the phonological processing performance of children with AD compared to children with comorbid disabilities in arithmetic and word recognition (AD/WRD) and to typically achieving (TA) children. Results indicated that, while children with AD did demonstrate impairments on all isolated naming speed tasks, trail making digits, and memory for digits, they did not demonstrate impairments on measures of phonological awareness, nonword repetition, serial processing speed, or serial naming speed. In contrast, children with AD/WRD demonstrated impairments on measures of phonological awareness, phonological short-term memory, isolated naming speed, serial processing speed, and the alphabet a-z task. Overall, results suggested that phonological processing impairments are more prominent in children with a WRD than children with an AD. Together, these studies further our understanding of the nature of the cognitive processes that underlie AD by focusing upon rarely used methods (i.e., age-matched achievement-matched design) and under-examined cognitive domains (i.e., phonological processing).

Best practice principles for management of children with developmental coordination disorder (DCD) : results of a scoping review

Background. Developmental coordination disorder (DCD) is a prevalent health condition that is frequently unrecognized despite the substantial evidence that has accumulated regarding how it affects children’s health, education and skills.Most literature focuses on measurement of impairment and description of intervention approaches for individual children; little is known about the principles that should guide best practice and service delivery for children with DCD as a population. The purpose of this study was to identify these principles. Methods. A scoping review was used to ‘map’ the information available to inform intervention and service delivery. Scholarly and grey literature written in English was identified in six databases, using a combination of keywords (e.g. guidelines, management, models and DCD); a ‘snow-balling’ technique was also used in Canada and the UK to access clinical protocols used in publicly funded health care systems. Over 500 documents were screened: 31 met inclusion criteria as they outlined practice principles for children with DCD as a population. Data regarding best practices were independently extracted by two reviewers and then compared with achieve consistency and consensus. Results. Two over-arching themes emerged, with five principles: (1) Organizing services to efficiently meet the comprehensive needs of children (e.g. Increasing awareness of DCD and coordination; Implementing clearly defined pathways; Using a graduated/staged approach); (2) Working collaboratively to offer evidence-based services (e.g. Integration of child and family views; Evidence-based interventions fostering function, participation and prevention). Conclusion Numerous documents support each of the principles, reflecting agreement across studies about recommended organization of services.While these principles may apply to many populations of children with disabilities, this review highlights how essential these principles are in DCD. Researchers, managers, clinicians, community partners and families are encouraged to work together in designing, implementing and evaluating interventions that reflect these principles.

Using an evidence-based online module to improve parents’ ability to manage their child with Developmental Coordination Disorder

Background : Developmental coordination disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents’ awareness and building capacity but few interventions incorporating these best practices are documented. Objective : To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioural changes when managing their child’s health condition. Methods : A mixed-methods, before-after-follow-up design guided by the theory of planned behaviour was employed. Data about the knowledge, skills and behaviours of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. One-way repeated measures ANOVAs and thematic analyses were performed on data as appropriate. Results : Fifty-eight participants completed all questionnaires. There was a significant effect of time on self-reported knowledge [F(2.00,114.00)=16.37, p=0.00] and skills [F(1.81,103.03)=51.37, p=0.00] with higher post- and follow-up scores than pre-intervention scores. Thirty-seven (65%) participants reported an intention to change behaviour postintervention; 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents’ behavioural change: sharing information, trialing strategies and changing attitudes. Factors influencing parents’ ability to implement these behavioural changes included clear recommendations, time, and ‘right’ attitude. Perceived outcomes associated with the parental behavioural changes involved improvement in well-being for the children at school, at home, and for the family as a whole. Conclusions : The online module increased parents’ self-reported knowledge and skills in DCD management. Future research should explore its impacts on children’s outcomes long-term.

Reflections on using a community-based and multisystem approach to transforming school-based intervention for children with developmental motor disorders

Evidence-based management of Developmental Coordination Disorder (DCD) in school-age children requires putting into practice the best and most current research findings, including evidence that early identification, self-management, prevention of secondary disability, and enhanced participation are the most appropriate foci of school-based occupational therapy. Partnering for Change (P4C) is a new school-based intervention based upon these principles that has been developed and evaluated in Ontario, Canada over an 8-year period. Our experience to date indicates that its implementation in schools is highly complex with involvement of multiple stakeholders across health and education sectors. In this paper, we describe and reflect upon our team’s experience in using community-based participatory action research, knowledge translation, and implementation science to transform evidence-informed practice with children who have DCD.

Social participation and interventions supporting teenagers and young adults living with developmental coordination disorder (DCD): results from a Scoping Review

Background: The impact of Developmental Coordination Disorder (DCD) on teenagers’ and young adults’ participation is not well documented. This article aims to synthesize the current knowledge on social participation, which is the performance of an individual in realizing his daily activities and social roles within its life environment. Strategies and interventions to support youths (15-25 years old) with DCD were also synthesized. Methods: A scoping review interrogating three databases and using ‘snowballing techniques’ was performed to identify both scientific and grey literature published between 2004 and 2014. Over 1000 documents were screened and 57 were read in full; 28 met inclusion criteria. A charting form based on 12 life habits described in the Disability Creation Process (DCP) and developed by two reviewers was used to extract data and report the results. Results: All life habits were reported to be affected for teenagers and young adults with DCD, with education and interpersonal relationships being the most frequently discussed. During adolescence and adulthood, new tasks and subsequent difficulties emerge, such as driving. Mental health difficulties emerged as a key theme. Few strategies and interventions were described to support social participation of youths with DCD. Conclusion: Many life habits are challenging for youths with DCD, but few evidence-based strategies and interventions have been designed to help them to increase their social participation.

Using an evidence-based online module to improve parents’ ability to manage their child with Developmental Coordination Disorder

Background : Developmental coordination disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents’ awareness and building capacity but few interventions incorporating these best practices are documented. Objective : To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioral changes when managing their child’s health condition. Methods : A mixed-methods, before-after design guided by the theory of planned behavior was employed. Data about the knowledge, skills and behaviors of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. Paired T-tests, sensitivity analyses and thematic analyses were performed on data as appropriate. Results: One hundred-sixteen, 81 and 58 participants respectively completed the three questionnaires. For knowledge and skills, post- and follow-up scores were significantly higher than baseline scores (p<0.01). Fifty-two (64%) participants reported an intention to change behavior post-intervention and 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents’ behavioral change: sharing information, trialing strategies and changing attitudes. Factors influencing parents’ ability to implement these behavioral changes included clear recommendations, time, and ‘right’ attitude. Perceived outcomes associated with the parental behavioral changes involved improvement in well-being for the children at school, at home, and for the family as a whole. Conclusions : The online module increased parents’ self-reported knowledge and skills in DCD management. Future research should explore its impacts on children’s long-term outcomes.

Feminist Disability Theory: Domestic Violence Against Women with a Disability

Women with a disability continue to experience social oppression and domestic violence as a consequence of gender and disability dimensions. Current explanations of domestic violence and disability inadequately explain several features that lead women who have a disability to experience violent situations. This article incorporates both disability and material feminist theory as an alternative explanation to the dominant approaches (psychological and sociological traditions) of conceptualising domestic violence. This paper is informed by a study which was concerned with examining the nature and perceptions of violence against women with a physical impairment. The emerging analytical framework integrating material feminist interpretations and disability theory provided a basis for exploring gender and disability dimensions. Insight was also provided by the women who identified as having a disability in the study and who explained domestic violence in terms of a gendered and disabling experience. The article argues that material feminist interpretations and disability theory, with their emphasis on gender relations, disablism and poverty, should be used as an alternative tool for exploring the nature and consequences of violence against women with a disability.