There are only two weeks remaining to complete the Down Syndrome Survey and we have now expanded the survey beyond British Columbia to ask for participation from families and caregivers in Alberta and Ontario.
Together with some dedicated medical professionals, who have donated their time to support this effort, we have developed a survey to assess the current health care needs of people with Down syndrome. We hope to have greater participation; currently there have only been 234 families in British Columbia who have completed the survey, including many who have partially completed the survey.
Many people with Down syndrome are slipping through the cracks due to the lack of a coordinated model of health care. Poor health care and limited access to important health screening means poor developmental outcomes and health across the lifespan. We need to raise the bar for health care practices and our hope is that the Down syndrome community will participate by providing the information needed to support our advocacy efforts. Without an expression of interest by the affected community it will be difficult to demonstrate that improvements are needed.
Please see the letter attached for further details or visit our website at http://www.dsrf.org/about-us/news-&-information/dsrf-announces-groundbreaking-survey-of-bc-families. The direct link to the survey is: http://bit.ly/1EfCLFy
The survey takes about 30 minutes, and technical assistance is readily available. Please complete this important survey, ask your friends to participate, spread the word and help us build some momentum for change.
Click here to see the letter for more information.