Other sources of information:
- Chapter fundraising, advocacy and social events: Elisha Chin
- Support: Karl Lottes, Resource Centre Director
Research: HD Buzz
Informed decisions are important when it comes to genetic testing, but Canadians don’t always hear the full story.
Today’s Global News report on “Home genetic testing” appears to be little more than an infomercial for the company selling the mail-in genetic test. The reporter claims that this test is beneficial to those WITHOUT health insurance. There is no discussion why the protocols for genetic testing are so rigorous, requiring counselling, waiting periods and other safeguards. Nor do they mention that once you have the results, you may be unable to find insurance, even non-health insurances. They do not mention that you may be fired so that you don’t burden the group health plan. They do not mention that Canadians are the only G8 citizens without protection against genetic discrimination. Granted, this is a short piece, but I question whether it falls in line with Global News Journalistic Principles and Practices which begins with “Our primary directive is to report accurate, balanced, timely and comprehensive news and information in the public interest.”
On this same day, I also watched the Huntington Society of Canada’s TV advertisement urging protection against genetic discrimination. This is part of their campaign for Huntington Disease Awareness Month (May.) The message:
MY REALITY… I have a 50% CHANCE of inheriting Huntington disease and my genetic test results will tell my fate.
CANADA’S REALITY… Genetic testing is available to all Canadians. WE ARE ALL AT RISK of our genetic information being used against us in Canada. Canada is the only G8 country that DOES NOT PROTECT its citizens from genetic discrimination.
What is Genetic Discrimination?
Genetic discrimination occurs when people are treated unfairly because of actual or perceived differences in their genetic information that may cause or increase the risk to develop a disorder or disease.
Genetic information is complicated and should not be used against us. This type of discrimination affects more than just those with Huntington disease, we are all at risk.
Every family has disease hidden in their genetics, so this affects every Canadian. Take the time to learn about this important issue and to inform your federal and provincial representatives.
Some genetic discrimination resources:
previous posts on Genetic Discrimination
Filed under: advocacy, genetic discrimination, genetics | Tagged: @GlobalCalgary, @HuntingtonSC, genetic counselling, genetic discrimination, genetic disease, genetic testing, genetics, Global News, Global News Journalistic Principles and Practices., HD, HSC, human rights, Huntington disease, Huntington Society of Canada | Leave a comment »
Today is International Day of Persons with Disabilities. This year, the United Nations has declared the theme to be: Removing barriers to create an inclusive and accessible society for all.
“Over one billion people, or approximately 15 per cent of the world’s population, live with some form of disability.
Persons with disabilities, “the world’s largest minority”, often face barriers to participation in all aspects of society. Barriers can take a variety of forms, including those relating to the physical environment or to information and communications technology, or those resulting from legislation or policy, or from societal attitudes or discrimination. The result is that persons with disabilities do not have equal access to society or services, including education, employment, health care, transportation, political participation or justice.”
Filed under: events, hosted by other groups, public awareness | Tagged: disability, International Day of Persons with Disabilities, removing barriers to create an inclusive and accessible society for all, UN, United Nations | Leave a comment »
The Cross Disability Support Services (CDSS) initiative assists Albertans with disabilities who require specialized services that they are unable to access, or do not qualify for, through other means. The CDSS initiative provides support for targeted groups of adults with disabilities .
Supports and Services
CDSS provides a diverse range of services across Alberta including:
Filed under: caregiving, government | Tagged: adaptive equipment, Calgary Alternative Support Services, Cross Disability Support & Services Initiative, independent living, recreational supports, volunteer opportunities | Leave a comment »
Did you know this program is available from Alberta Human Services – Disability Services?:
The goal of the Community Access for People in Continuing Care (CAPCC) initiative is to provide supports to Albertans under the age of 65, living in continuing care centres who are socially and culturally isolated. Community Access Coordinators focus on individual goals to develop supports to help individuals participate in community activities in an effort to reduce social isolation and develop, maintain and enhance the involvement of family and friends.
Community Access Coordination Services
Community Access Coordinators are available to assist residents in continuing care to become more active in their community. Individual service plans are developed based on a person’s interests and the activities available in their community. Activities could include: outings with family and friends, volunteer activities, church or spiritual activities, movies or continuing education.
Further information: Community Access for People in Continuing Care Initiative
Filed under: caregiving, housing, resources, self-care | Tagged: Alberta, Community Access for People in Continuing Care, disability, Disability Services, Government of Alberta, Human Services | Leave a comment »
Try the Canadian government’s Benefits Finder tool