A sampling of CARE ID members’ research, represented as user friendly summaries are now available by selecting the Projects category.
Presentation on L’utilisation des Mesures de Contrôle Auprès des Adultes Présentant une Déficience Intellectuelle Vivant dans la Communauté
On Tuesday, April 2nd at 12:00 p.m. EST, Julie Coté and Diane Morin will give a CARE-ID Teleconference Presentation in French on L’utilisation des Mesures de Contrôle Auprès des Adultes Présentant une Déficience Intellectuelle Vivant dans la Communauté.
Presentation on Perceptions of People with Intellectual Disability
On Tuesday, March 5th at 12:00 p.m. EST, Jami Petner-Array will give a CARE-ID Teleconference Presentation on Perceptions of People with Intellectual Disability (ID) Receiving Ssupport and the Persons Providing Support Regarding the Autonomy of People with ID – Results from a Qualitative Study.
Presentation on Developmental Disability and Dual Diagnosis
On Tuesday, February 5th at 12:00 p.m. EST, Susan Morris of the Centre for Addiction and Mental Health will give a CARE-ID Teleconference Presentation on Developmental Disability and Dual Diagnosis – A study of the Canadian Public Policy Context.
2012-2013 Teleconference Presentation Schedule Update
An updated presentation schedule is available (PDF). The next CARE-ID teleconference presentation will be Tuesday, February 5th, 2013 at 12:00 p.m. EST.
Continuity of Care in the Community: A Multisite Case Study
What is the issue/problem?
As people living in the community with intellectual disabilities age, there are increasing difficulties in swallowing. When the feeding teams provide information about changes to be made to diet, positioning or oral health, the team finds that often there are recurring problems because the recommendations are not followed.
What did you do in your research?
We wanted to find out why this was happening. What were the issues being faced in the community? Three individuals who had a recent feeding team assessment were identified and all support people of these three individuals were interviewed about their knowledge of the assessment and how they got their information, factors they thought interfered with and facilitated proper communication. Observations were also made in the community homes and day care areas as well as policies examined.
What did you find out?
We found out that there is miscommunication between the community homes and day cares was not clear. There was a lack of sharing of information because people believed that the privacy of information laws prevented them from sharing information between support workers. The structure of organizations was similar and good managers facilitated the proper feeding by using simpler language, using illustrations of the correct way to feed and by modeling and following up on the instructions. High staff turnover also contributed to less consistent feeding methods.
What are the take home messages?
Using simple and understandable language to demonstrate instructions is very important. Good communication polices for organizations supporting those who cannot speak for themselves is very important. Direct managers of community homes and day care areas are vital links to consistent feeding patterns. It is important that people understand the privacy laws and they are applied appropriately, not to withhold important safety information!
For more information please contact: Dr. Beverley Temple, 204-474-6660; bev.temple@ad.umanitoba.ca
National Epidemiologic Database for the Study of Autism in Canada (NEDSAC)
What is the issue/problem?
The prevalence of autism has increased substantially over the past two to three decades. Studies examining prevalence trends over a shorter, more recent time frame have also reported significant increases. These studies originate from other countries, and there is little information from Canada to assist policy makers, service providers and advocates in this country. From an epidemiologic perspective, it is unclear whether the increases in prevalence reflect true changes in the proportion of children who develop autism—that is, changes in risk—or whether they are caused by a growing awareness of autism among parents and professionals and changes in diagnostic practices.
What did you do in your research?
Children with autism 2–14 years of age who lived in Prince Edward Island or Southeastern Ontario at any time from 2003-2010, or in Newfoundland and Labrador from 2003–2008, were identified through agencies that provide services to this population (diagnostic centres, Education, provincially funded early intervention programs). We estimated the average annual percent increase in the prevalence of autism in these regions, and examined whether factors like an imbalance between the number of children with autism who moved into and out of the regions during the study period (“differential migration”) and changes in the age at which children were diagnosed could explain the changes observed.
What did you find out?
The average annual percent increases in prevalence ranged from 9.7% to 14.4%. Differential in-migration (that is, more children with autism moving into the region than moving away) and greater detection of autism in older children may have contributed to a small portion of the increases observed. Many children with autism were not diagnosed until after their fourth birthday.
What are the take home messages?
Similar to what has been reported in other countries, the prevalence of autism is increasing in Canada; this means that the demand for various services could increase substantially. While certain factors related to changes in awareness and diagnostic practices explained some of the increases observed, we cannot rule out the possibility of a true increase in risk. Greater effort needs to be put into identifying children with autism at a younger age so that they, and their families, can access services and supports earlier.
Helpful websites related to the topic: www.nedsac.ca
For more information please contact: Dr. Hélène Ouellette-Kuntz, 613-548-4417 x 1198; helene.kuntz@queensu.ca
Forecasting Service Needs for Youth with Autism Transitioning to the Adult Developmental Services Sector
What is the issue/problem?
The prevalence of autism continues to rise, with an estimated average annual percent increase of close to 14% in Southeastern Ontario. This increase could add substantially to future caseloads in the adult developmental services sector. The service and support needs of these individuals are likely to be unique, given the high prevalence of comorbid medical and psychiatric conditions and behavioural challenges in the autism population. Effective service planning requires a better understanding of the proportion of youth and young adults with autism who meet Developmental Services Ontario eligibility criteria, and their support needs.
What will you do in your research?
The main objectives of this study include the following: a) To estimate the number of youth 16–24 years of age with autism whose families seek developmental services from the Ontario Ministry of Community and Social Services, and the proportion of those who meet eligibility criteria for those services; b) To describe the support needs of those youth; c) To develop a model to forecast their adult developmental service needs; and d) To meet with Ministry officials to discuss the feasibility of undertaking a study to validate the forecasting model.
The study will begin in April 2013 and continue for one year.
For more information please contact: Dr. Hélène Ouellette-Kuntz, 613-548-4417 x 1198; helene.kuntz@queensu.ca
Investigating the Association Between Interpregnancy Interval and Autism Spectrum Disorders Using the Manitoba Centre for Health Policy’s Data Repository
What is the issue/problem?
A recent study from California found that shorter intervals between the birth of one child and the beginning of the next pregnancy (the interpregnancy interval) increased the risk of autism. If this finding is confirmed, it would be one of the first known risk factors for autism that can be modified.
What did you do in your research?
We identified first- and second-born siblings who were born in Manitoba between 1988 and 2005. Multiple birth siblings were excluded. The interpregnancy interval was calculated for the younger (i.e. second-born) siblings. We then searched databases that contain information on the use of health, education, and social services by residents of Manitoba to determine which younger siblings developed autism, and to collect information on other factors related to the mother (e.g. health conditions during pregnancy) and child (e.g. diagnosed with an intellectual disability). The data are being analyzed to determine whether shorter interpregnancy intervals are associated with an increased risk of autism in this population, and whether that association varies depending on factors such as maternal age at delivery.
The analysis is in progress, and should be completed by August 2013.
Helpful websites related to the topic: http://www.ncbi.nlm.nih.gov/pubmed/21220394; http://www.webmd.com/brain/autism/news/20110109/closely-timed-pregnancies-may-increase-autism-risk
For more information please contact: Dr. Hélène Ouellette-Kuntz, 613-548-4417 x 1198; helene.kuntz@queensu.ca
Medication Use Among Adults and Adolescents with Autism Spectrum Disorders
What is the issue/problem?
We want to know more about medication use in adults and adolescents with ASD
What did you do in your research?
We looked at the medication profiles of adults with ASD to understand how often they were taking multiple medications and what accounts for why some adults are in this situation.
What did you find out?
We found that over one half of adults were prescribed psychotropic medications, with just over one quarter taking 2 or more. Adults with ASD who were seeing a psychiatrist, had previously been to the emergency department, or had a history of aggression were more likely to be taking multiple medications. Parents who had a child with ASD taking multiple medications were also more likely to report distress.
What are the take home messages?
Adults with ASD are a highly medicated group of individuals and multiple medication use is a concern for this population.
Have you developed any tools, training materials, books etc. that you would like to share?
Not yet, but I hope to learn more about medication use in this population with the longer-term goal of developing tools to help individuals with ASD and their caregivers monitor medications.
Helpful websites related to the topic: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/medication-guide
For more information please contact: Johanna Lake, 416-535-8501 x7815; johanna.lake@camh.ca