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Health Care Access Research and Developmental Disabilities

Atlas maps health of 66,000 Ontarians

The Health Care Access Research and Developmental Disabilities (H-CARDD) program was pleased to recently launch the Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario. This is a landmark study of the health status and health care use of over 66,000 adults with developmental disabilities across the province. The Atlas shows that adults with developmental disabilities face inequities in their health care, and proposes three practical solutions:

1. Improve the quality of primary care through the application of evidence and best practices.
2. Modify the broader health care system through the development of care plans and the fostering of cross-sectoral collaboration, and coordination.
3. Strengthen partnerships to put patients, their families, and caregivers at the center of care.

A summary of the Atlas of Primary Care of Adults with Developmental Disabilities in Ontario is now available online at www.hcardd.ca or click the picture to the right for the full text.

Do you have any questions, thoughts or comments on the Atlas? We would love to hear from you. Please use the comment button to submit your comments or email us at HCARDD@surreyplace.on.ca
 
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What people are saying about the Atlas

"It has been a real pleasure to participate in an initiative that has resulted in the completion of such an important document. The Atlas provides the latest, most up-to-date information about the health care needs of this vulnerable population. This report will be a valuable resource for planners, policymakers, health care providers, and funders" - Mike O'Shea, Senior Officer Mental Health, NE LHIN

"This Atlas is a leap forward because it identifies solutions for the gaps that were identified in health care for adults with developmental disabilities. It presents cutting edge information on the healthcare status of adults with developmental disabilities in our province, and I was able to see where my own experience fit into that. The recommendation to strengthen collaborative cross-sectoral relationships lays the foundation for success by reducing duplication, and streamlining approaches." - Cecilia Tolley, family member of someone with a developmental disability.

H-CARDD highlights its work at conference

On November 12, 2013, stakeholders with an interest in developmental disabilities descended on downtown Toronto, for the second Health and Wellbeing in Developmental Disabilities Conference. The two-day event provided H-CARDD with an opportunity to highlight its work, including the recently launched Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario. The event also enabled a rich exchange of knowledge among researchers, clinicians and others.

In particular, Drs. Lunsky and Lennox, contrasted health care experiences related to developmental disabilities in Canada and Australia.Other workshops and presentations examined health disparities, and how to bring about systems change.

"The conference was a terrific success", says Susan Morris,  who co-chaired the event with Peter Wyngaarden. "We had 180 attendees including 50 students. Participants were excited and stimulated by the integration of research and practice in the keynote talks and the workshops provided great opportunities for inter-professional discussion."

 
Left to right: Susan Morris, Dr. Yona Lunsky and Dr. Nick Lennox at the Health and Wellbeing in Developmental Disabilities conference, Toronto, November, 2013.

A night of nudging

November 11, 2013. "I don't have any notes", Joi Guttman-Young told a roomful of people in Toronto-and she didn't need any. The mother of a 44-year-old woman with an intellectual disability, Joi spoke eloquently and movingly about her experiences raising her daughter. The audience was made up of family members who themselves are raising children: kids with developmental disabilities or kids who may be on the Autism spectrum.

"Nobody knew what to do with her," said Joi, who eventually became an advocate for people with developmental disabilities-and has been one for over forty years. It wasn't always easy, but her daughter, Joi emphasized, has a great life now.


The evening - entitled "Nudging the Health Care System: Empowering people with disabilities and their families" - featured several other speakers, including another mother, Ellen Badone, and Dr. Nick Lennox, a noted researcher from the University of Queensland. It was a prelude to a larger event, The Health and Wellbeing in Developmental Disabilities Conference (see above). Partners who made the night possible included Autism Ontario, The Geneva Centre for Autism, and the Centre for Addiction and Mental Health.

Ellen reflected on her own challenges with the health care system. The mother of a twenty-two-year old daughter with Asperger's Syndrome, OCD and general anxiety disorder, Ellen talked about the impact of mental health medication on her daughter's physical health. Although she expressed frustration with the health care system, she did note that, "It is possible to nudge the system in the direction of providing care."

Dr. Lennox looked at some of the enablers and barriers to healthcare as well as the importance of communicating with one's health care provider. Providers don't often see people with developmental disabilities, and therefore need as much information as they can get.

"Your stories are extremely valuable," he told the audience.

The panel then fielded questions and comments from family members, a young woman who self-identified as being on the Autism spectrum, and others. For those present it was a wonderful night of sharing stories and gaining knowledge.

Meeting the team 


The H-CARDD Newsletter recently caught up with Dr. Simone Vigod, a scientist at the Women's College Hospital Research Institute. Dr. Vigod has built a successful research program focusing on epidemiology and health services research relevant to women and men with mental health issues across the lifespan.

"Part of my research focuses on the health of women with severe and persistent mental illness," says Dr. Vigod. "While populations with intellectual and developmental disabilities are clinically different, there are many similarities in terms of vulnerability to adverse women's health and reproductive health outcomes, as well as with the social determinants of health. I believe that there is a lot more to learn from research and interventions in each of these fields (women's mental health and developmental disabilities) to improve health care delivery in the other."

Dr. Vigod is also an Assistant Professor in the Department of Psychiatry and in the Institute of Health Policy, Management and Evaluation at the University of Toronto, and an Adjust Scientist at the Institute for Clinical Evaluative Sciences.

H-CARDD presents

H-CARDD researchers had a busy end to 2013. Here is a selection of recent presentations:
  • Morris, S. Lunsky, Y., Perry, A. & Lake, J. (2013, October). Preventing ED visits: knowledge-to-action. Paper presented at the Annual Conference of the National Association for the Dually Diagnosed (NADD), Baltimore, USA.
  • Ouellette-Kuntz, H. (2013, November). Health Care Access Research and Developmental Disabilities: providing evidence of health disparities. Paper presented at the IASSISS Health Special Interest Research Group Conference, Nijmegen, The Netherlands.
  • Cobigo, V. & Jaakimainen, L. (2013, November). Inequities in cervical and breast cancer screening: The role of primary care practitioners. Paper presented at the Annual Meeting of the North American Primary Care Research Group, Ottawa, Ontario
  • On December 18, 2013 H-CARDD presented the Atlas to the Ontario Select Committee on Developmental Services. For a full transcript, click here.
  • On January 22nd, 2014 H-CARDD presented the Atlas to the Community Networks of Specialized Care (CNSC).  For a hand-out of this presentation, click here.
Webinars:
  • Finding your way through the healthcare maze: lessons from research on health services and ASD. Presented at Autism Ontario. For a hand-out of this webinar, click here.
  • DD-CARES: Preventing and Improving Emergency Care for Individuals with Developmental Disabilities. Presented at The Arc, USA. For the archived webinar, click here.

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The H-CARDD program is funded by the Canadian Institutes of Health Research, the Ontario Ministry of Health and Long Term Care and the Ministry of Community and Social Services. H-CARDD is a research partnership between the following institutes and universities: Centre for Addiction and Mental Health, Sunnybrook Health Sciences Centre, Institute for Clinical and Evaluative Sciences, Univeristy of Ottawa, Lakehead University, Queen's University, Women's College Hospital, York University, University of Ontario Institute of Technology, University of Toronto, Surrey Place Centre.
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