Points of view
Dr. Patricia Canning, right, and Madhu Pinto, a master’s student in applied social psychology, are part of a team surveying parents of children and adolescents with special needs.
By Jeff Green
A desire to fuel change and help inform government policies is the backbone to a new comprehensive province-wide survey currently being conducted by a team of Memorial researchers.
The goal is to develop an understanding of what parents of children and adolescents with special needs are saying about the services they receive, what has helped them, what additional services they think would be helpful, and the challenges they face in providing care for their children.
The information collected will then help inform policy makers and practitioners on how to improve policies and services for children and adolescents with special needs and their families.
“It is essential to hear from parents,” said Dr. Patricia Canning, a professor of education and psychology and co-director, along with Dr. Mary Courage, Psychology, of the university’s site of the Centre of Excellence for Children and Adolescents with Special Needs.
The study is being conducted in conjunction with researchers from Mount Saint Vincent University in Nova Scotia.
Both Memorial and Mount Saint Vincent are members of the centre, a national organization established in 2000 to engage in research that is important for policy and programs for children and families with special needs.
“No one knows their needs and those of their child more. We need to know from parents what they think and have experienced and what they see is needed to help them as much as possible in caring for and raising a child with special needs.”
The hope is hear from as many parents of children with special needs – from birth to 18 years of age – from all over the province, particularly rural regions.
“We want our work to help in some way to ensure that every child has the opportunity to develop to his/her maximum potential,” she added. “Having the survey available in print, on the website and the telephone is our attempt to reach as many parents as possible all over this province.”
The aim of the research project is to capture a complete picture of the services, challenges, and future opportunities of parents of children with special needs.
The team is looking to hear about all kinds of experiences including getting services such as transportation, the cost or availability of respite care, school programs, and what – if any – effect having a child with special needs has had on the parent’s employment situation.
“We know that some parents report that they have had to forego employment or a promotion because of the lack of supports for their child,” said Lynn Frizzell, research co-ordinator with the Centre of Excellence.
“Others have reported having to move from rural to urban centres to get the kind of help they need. An individual service plan for children is another relatively recent development and we would like to learn about this and if, how, and why it is working or not working for families.”
The survey is currently underway and includes a questionnaire which takes roughly 20-30 minutes to complete. Answers are confidential and private, and contact information will not be given to anyone for any reason.
Dr. Canning urged parents to voice their concerns and issues, stressing that the findings from the survey will help inform all levels of government and ultimately improve services for children with special needs. She said the report will not sit on a bookshelf; rather its findings will be put into action.
“We have had a strong record of disseminating our work to the community beyond the university,” she noted.
In addition to being sent to schools and regional health authorities, a summary of the report will also be available in French.
The report will be posted online and copies will be sent to anyone who requests it.
The team will also present their findings to provincial departments such as Health and Community Services, Education, Child Youth and Family Services, along with the Health Agency of Canada.
“We are fortunate our provincial government and the university enjoy a strong collaborative relationship in many areas,” added Dr. Canning. “Our experiences in other provinces clearly indicate that this is an exceptional situation for both government and researchers, to the benefit of both and ultimately the citizens of this province.”
Parents interested in completing the survey can do so online at www.snis.ca or contact Ms. Frizzell at 709-737-2395 or firstname.lastname@example.org, or can write to the Centre for Special Needs, Box 171, G.A. Hickman Building, Memorial University, St. John’s, NL, A1B 3X8.