Journal on Developmental Disabilities
The Journal on Developmental Disabilities is a peer-reviewed journal with a growing regional and international readership.
Volume 21 Number 2 – Special Issue on Deinstitutionalization and General Issue
Ivan Brown and John P. Radford
Building and operating large institutions for people we describe today as having developmental disabilities spanned 133 years in Ontario, from the opening of the first asylum in 1876 to the closing of the final three facilities in 2009. Institutions were strongly supported by economic and cultural trends, and accompanying philosophical rationales, in Europe and North America, and it seemed natural for Canada to follow these trends. Institutions were intended to promote health, safety, training, and other aspects of growth and well-being, and many successes were noted. As time went on, however, overcrowding, underfunding, lack of demonstrated success, and philosophical, economic, and social changes resulted in a long decline of institutions. The philosophy of normalization, which claimed people with disabilities had the right to live in communities, became popular in the 1970s in Ontario, and resulted in the dramatic growth of community services and housing options. Community living gradually replaced the long tradition of institutional living in Ontario.
Dorothy M. Griffiths, Frances Owen, and Rosemary Condillac
On September 9, 2004 the government of the province of Ontario, Canada announced that it would close the last three remaining large, government-run residential facilities for adults with intellectual disabilities. This final phase of the Ontario deinstitutionalization process became known as the Facilities Initiative and was completed on March 31, 2009. Four studies were undertaken to evaluate the Facilities Initiative implemented by the Ontario Ministry of Community and Social Services. The current study reports on the findings from a survey that recorded the perceptions of 61 family members of former facilities residents. The surveys were distributed to families beginning one year following the final closure of the three facilities. The survey results indicated that families perceived that the vast majority of individuals who were placed in the community as a result of the Facilities Initiative have excellent or good quality of life. Families reported that the transfer to the community and the subsequent adjustment were generally good to excellent, and they indicated an overall satisfaction with the present placement and with the supports and services provided. Although “counter-stories” were evident and of note, the overall results revealed that of the families who participated in this study, most families, even those who were initially concerned, were pleased with the outcomes of the Facilities Initiative.  Nelson (1995) referred to “counter-stories” that represent the stories of the real life experiences that can offer alternative understanding of the overall findings from the data.
Dorothy M. Griffiths, Frances Owen, and Rosemary Condillac
On March 31, 2009 the last three remaining government operated facilities for persons with intellectual disabilities closed in Ontario, ending the Ministry of Community and Social Services’ Facility Initiative and more than 30 years of deinstitutionalization. Following the closures, four studies were undertaken as part of the Facilities Initiative evaluation. This summary report provides the results of an agency survey concerning outcomes for each individual who moved to community living. Surveys were sent to all community agencies that participated in the Initiative. Responses were received for 114 of the 941 persons who were repatriated. Responses from the agency surveys indicated that the vast majority of individuals who were placed in the community as a result of the Facilities Initiative were perceived to have excellent or good quality of life. Agency respondents reported that the transfer to the community and the subsequent adjustment were generally good to excellent, with respondents reporting that most individuals adjusted in less than three months. The study results do note, however, that there were individual differences within the sample. Overall, the study supports the view that community living is associated with more positive life values than institutional living.
Frances Owen, Dorothy M. Griffiths, and Rosemary Condillac
This paper reports findings from two of four studies conducted as part of the Ontario Facilities Initiative that focused on the outcomes of the closure in 2009 of the last three provincially operated facilities for persons with intellectual disabilities. As a companion to the outcome studies (Griffiths, Owen, & Condillac, 2015a, 2015b) that report positive results for individuals following transition to the community, this paper explores the nature of the deinstitutionalization process from the perspectives of family members of former facility residents, community agency staff, former facility staff, planners, and behaviour consultants. Participants emphasized the importance of a focus on individualized and well coordinated cross-constituency information sharing and planning to ensure that appropriate community services are matched to authentic individual needs and preferences. Recommendations for other jurisdictions undertaking a similar initiative included the need to inform family members of the impending closure early in the process to ensure that they are aware of time frames and the range of community services available. The central role played by planners was identified and recommendations were made for the training and support needed to facilitate their work.
Patricia Seth, Marie Slark, Josée Boulanger, and Leah Dolmage
The purpose of this article is to explore the impact of the Huronia Regional Centre class action lawsuit against the Province of Ontario from the perspective of the two women who brought the case forward. Inspired by a belief in Nothing About Us, Without Us, this paper reflects the lived experiences of two survivors in conversation with a sister who has supported them throughout the process and another sister in search of supports for her brother to live well in the community. Their discussions reveal some of the ways that the persistent lack of control, power imbalances, and poverty limit their potential and make them vulnerable to different types of abuse.
General Issue Articles
Karen Chartier and Maurice Feldman
There is increasing recognition of the need for specialized services for persons with intellectual disabilities who have mental health and behavioural challenges (dual diagnosis). Using pre-post and multiple baseline (across participants) designs, we evaluated a publicly-funded specialized community treatment home program for individuals with dual diagnosis and challenging behaviour, based on the first seven admissions. All participants were admitted with high intensity, but low frequency aggression, self-injury and property destruction, along with less serious challenging behaviours such as yelling and threatening. Target behaviours decreased for all participants while in the treatment home. All were discharged successfully to family homes, group homes or supported apartments. Available data indicated that target behaviours and several social validity measures (e.g., police calls, hospital admissions) maintained at low levels up to one year in the follow-up location. Quality of life ratings improved, and consumer satisfaction was high. The findings from this program evaluation suggest that specialized community treatment homes may be an effective supplemental treatment model for individuals with dual diagnosis when other community resources are unable to support challenging behaviour.
Natira Staats, Briana S. Nelson Goff, Nicole Springer, and J. Kale MonkNatira Staats, Briana S. Nelson Goff, Nicole Springer, and J. Kale Monk
The present study explored current intrapersonal and interpersonal functioning of parents with a child diagnosed with Down syndrome. The participants included a national sample of participants who learned of their child’s diagnosis either from prenatal screening/testing (n = 285) or from a postnatal diagnosis (n = 159). The main focus of this study included parents’ coping strategies, hope, life satisfaction, relationship adjustment, and relationship satisfaction. These variables were explored using an Analysis of Variance (ANOVA) design. Similar to qualitative findings of limited differences between timing of awareness in diagnosis, the results indicated no statistically significant differences between the two groups on the measures of interest. Based on these findings, we provide initial quantitative evidence that parents who receive a postnatal diagnosis may not be at a large disadvantage compared to parents who had more time to prepare for a child with a Down syndrome diagnosis. The study provides an initial quantitative analysis of parents’ levels of functioning related to their child’s Down syndrome diagnosis based on the timing of the diagnosis, which is currently absent in the literature.
Olena Helen Darewych, Natalie Rae Carlton, and Kevin Wayne Farugie
This phenomenological art-based study explored digital technology as a new art medium and clinical intervention tool in art therapy with adults with developmental disabilities. Eight adults with a developmental disability who were enrolled in a traditional community art program volunteered to partake in the study. Participants attended five one-hour individual art therapy sessions during which they created on a Lenovo Yoga 13.3-inch Windows 8 Convertible Ultrabook™ and a Samsung 7-inch Galaxy Tab 3 Android touch tablet. The results revealed the following six themes: a simple and mess-free digital canvas, independence, interplay of digital art and music, computer skills and cognitive development, voice and vision, and digital art directives. The three most favoured image-making applications among participants were: Fresh Paint, Coloring Mandalas, and Sand Draw while the two most preferred creative activity applications were: PuzzleTouch and Sticker Tales. Future research with individuals of all ages with developmental disabilities is recommended in order to continue exploring the opportunities and challenges of digital devices as image making and creative activity tools.
There is need for the study of disability among Indigenous people. Indigenous knowledge is not whole without the study of disability within. Too much emphasis only on what the Indigenous people know or what they do differently may further subjugate knowledge about how disabled people resist their marginality. Societal discrimination of disabled people among the Indigenous African people can only be addressed when their voices are heard or when they make themselves visible as it is in this paper.
Emily Hayles, Desley Harvey, David Plummer, and Anne Jones
Patient and carer experiences of health care are important for service improvements. However, the literature available often evaluates experiences from a health professional perspective rather than exploring the perspective of patients or families. Health care of children with cerebral palsy directly involves and impacts families. Accordingly, research exploring experiences of health care for this group of patients and carers should adopt a family perspective. This article provides an illustrative example of the decision-making processes that guided selection of social constructivism and grounded theory methodology for a research project aiming to capture family experiences of health care for children with cerebral palsy in a regional area of Australia. Adopting a family approach for the investigation of experiences of health care should be considered for future research in the area of paediatrics, but also for other areas of health in which the family plays a key role.
Larissa S. Baleva, Alla E. Sipyagina, Martin Zenker, Julia M. Kagan, Lubov I Danilycheva, and Maja Sucalo
The authors review the data available in the literature on a rare genetic disorder – Johanson-Blizzard syndrome – and present their clinical observations on one patient after longitudinal follow--up. Particular emphasis is on multiple malformations which are the clinical hallmark manifestations of the disorder: congenital exocrine insufficiency, and abnormalities of the maxillo-facial region, hearing and sight. Homozygous or compound heterozygous mutations in the UBR1 gene typically result in Johanson-Blizzard syndrome. A molecular genetic study detected two mutations at different sites in the UBR1 gene. These have not been previously described in the syndrome, but likely result in the patient’s disorder. One of the mutations was maternally inherited. The differential diagnosis of this syndrome and multifaceted therapy, including clinical nutrition and enzyme therapy are presented. Follow-up from age 8 to 16 years of age showed a positive trend overall in the patient’s condition.