Positioning of the Canadian Down Syndrome Society

ABOUT CDSS / POSITIONING

The Canadian Down Syndrome Society (CDSS) has taken a position on a range of important issues associated with the Down syndrome community in Canada. Click on each issue to read the full position statement or click to view the downloadable PDF versions.

Please note: Our position statements are not static documents.  As we continue to gather research, our statements may be subject to change in order to reflect new findings.  It is the goal of CDSS to have position statements that are relevant and up to date.

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

Preferred Language

The Canadian Down Syndrome Society is committed to ensuring that the Down syndrome community in Canada is valued, supported and that individuals with Down syndrome are given equitable opportunities to contribute to society as fully participating citizens.  We work to empower Canadians with Down syndrome through raising awareness and by providing information about Down syndrome for all life stages from prenatal to retirement years. We foster a climate of understanding and mutual respect for the dignity, worth and equal rights of all people.

The Canadian Down Syndrome Society supports the use of preferred language that respects the unique strengths and skills of people with Down syndrome.  By using language that is respectful and informed, we can help build accepting communities in which all people are valued and participating citizens.

To emphasize the abilities and not the limitations, we support the following guiding principles:

  • Use people-first language that describes who the person is first, not their disability.  For example: instead of “a Down syndrome child,” it should be “a child with Down syndrome”.
  • Avoid the use of incorrect terminology.  A person “has” Down syndrome, it is not a disease or illness and they do not “suffer from” or are “afflicted by” Down syndrome.
  • Do not use the terms “retarded,” “handicapped,” “challenged,” or “special needs.”  The use of these inappropriate words can cause barriers between people.  Instead, use the terms “intellectual disability” or “cognitive disability.”
  • Avoid using stereotypes and generalizations when referring to people with Down syndrome. For example: “people with Down syndrome are always happy,” it is important to remember that people with Down syndrome, just like everybody else, experience a wide range of emotions.

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF

Access To Medical Care

The Canadian Down Syndrome Society works to ensure equitable opportunities for all Canadians with Down syndrome by fostering a climate of understanding and mutual respect for the dignity, worth and equal rights for ALL people. The Canadian Down Syndrome Society asserts that Down syndrome should not prohibit an application for or access to medical treatments and/or insurance coverages.

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF

Supported Employment

The Canadian Down Syndrome Society is committed to ensuring that the Down syndrome community in Canada is valued, supported and that individuals with Down syndrome are given equitable opportunities to contribute to society as fully participating citizens.  We work to empower Canadians with Down syndrome through raising awareness and by providing information about Down syndrome for all life stages from prenatal to retirement years. We foster a climate of understanding and mutual respect for the dignity, worth and equal rights of all people.

Background:

Although many people with Down syndrome have demonstrated abilities and aspirations to engage in meaningful work in the community, a large percentage of the Canadian population with Down syndrome remain unemployed, or are under-employed where they might be paid insufficiently and/or may not be working to their full potential.  Some people with Down syndrome experience barriers and an increased level of disparity to appropriate education, career development, training and adequate supports to have gainful employment and to be fairly compensated when compared to the general population.

Position statement:

As work enhances an individual’s quality of life, the Canadian Down Syndrome Society (CDSS) asserts that people with Down syndrome have the right to be employed in the community, where they can work alongside people of all abilities, earn fair and equitable compensation and pay taxes like other Canadians.  People with Down syndrome should be supported to make informed decisions about their careers and have places of employment available to them where they can gain experiences and contribute to their communities and to society.

The CDSS supports the following guiding principles to serve our Supported Employment Position:

  • Individuals with Down syndrome will earn at least minimum wage or better.
  • Employment benefits will meet all requirements of applicable Canadian labour standards.
  • Job choice and supports will be identified through individualized planning.
  • Required accommodations and supports will be available and portable as long as individual may require them.
  • Transition activities will be facilitated early in education settings to help individuals explore and experience post-secondary and employment options that help them make informed decisions about their futures before graduation from secondary school.
  • General and specific job skill training and actual paid work experiences will be available in the community including co-op and paid internship opportunities to enhance the individual’s marketability and to help them advance in careers or chosen areas of interest.
  • Workplaces are encouraged to promote diversity, equity, social responsibility, and accessibility. These workplace qualities are beneficial to all the employees.
  • Help dispel employers perceived concerns about the cost of employing, providing on the job supports and offering disability accommodations to people with Down syndrome.

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF

Immigration to Canada

The Canadian Down Syndrome Society supports Canadian values and our government’s vision of inclusion. The Government of Canada does not  reject permanent resident applications from those with serious health conditions or disabilities. Please contact the Canadian embassy, high commission or consulate in your country of origin for further information, or visit https://www.canada.ca/en/immigration-refugees-citizenship/services/application.html

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF

Inclusive Education

Inclusive Education

The Canadian Down Syndrome Society is committed to ensuring that the Down syndrome community in Canada is valued, supported and that individuals with Down syndrome are given equitable opportunities to contribute to society as fully participating citizens.  We work to empower Canadians with Down syndrome and achieve this by raising awareness and providing information on Down syndrome for all life stages from prenatal to retirement years.  We foster a climate of understanding and mutual respect for the dignity, worth and equal rights of people.

Background:

Inclusive education means that all students attend and are welcomed by their neighbourhood schools in age-appropriate, regular classes and are supported to learn, contribute and participate in all aspects of school life.  Inclusive education is about ensuring access to quality education for all students by effectively meeting their diverse needs in a way that is responsive, accepting, respectful and supportive. Students participate in the education program in a common learning environment with support to diminish and remove barriers and obstacles that may lead to exclusion. 1

Position Statement:

The Canadian Down Syndrome Society respects the right of families to make personal decisions about the child’s education based on what is best for the child in terms of academics, social, behavioral and support needs.  The Canadian Down Syndrome Society asserts that all students including those with Down syndrome, have a right to be included and progress within an inclusive educational environment where students of all abilities learn together and are accepted, valued and participating students.

The CDSS supports the following guiding principles to serve our position:

  • By promoting inclusive education, we help to ensure that today’s students create an inclusive society tomorrow.  Inclusive education provides the foundation that enhances the wellbeing of every member of the community and helps strengthen their capacities to be valued, productive members of their communities.
  • Individualized Education Plans (IEP’s ) should be aligned with the student’s personal capacity, goals and academic potentials.  Ensure that the plan identifies specific needs, establishes clear priorities and that there is a plan for implementation with appropriate accommodations and program modifications in place.
  • It is essential for teachers, education assistants and other support staff to receive opportunities for professional development for appropriate skills and strategies that promote student-centered teaching.
  • Engage in effective and ongoing communication between parents and teaching teams to ensure students are supported, regularly assessed and accommodated.
  • Commitment and leadership from school principals, staff and parents must be obvious, to ensure a whole school approach to inclusion that builds capacity by implementing policies and developing learning environments that are respectful, supportive, safe and engages the school community.
  • Promote a positive learning environment where students are able to fully participate, contribute, have a sense of belonging and are free from discriminating attitudes and beliefs.

1 https://inclusiveeducation.ca/about/what-is-ie/

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF

Prenatal Genetic Screening and Testing

The Canadian Down Syndrome Society is committed to ensuring the Down syndrome community in Canada is valued, supported and that individuals with Down syndrome are given equitable opportunities to contribute to society as fully participating citizens.  We work to empower Canadians with Down syndrome and achieve this by raising awareness and providing information on Down syndrome for all life stages from prenatal to retirement years.  We foster a climate of understanding and mutual respect for the dignity, worth and equal rights of all people.

Background:

Each year in Canada, 450,000 women become pregnant 1and some decide to undergo optional prenatal screening and diagnostic tests to assess the likelihood of genetic conditions before the baby is born.  Women can choose between different types of prenatal screening depending on the gestational age (how far along they are) and what is available in their province or territory.  Our concern is that some women may make decisions about their pregnancy based on negative attitudes and inaccurate, outdated information about Down syndrome.

Position Statement:

The Canadian Down Syndrome Society (CDSS) respects the rights of women if they choose to undertake prenatal testing for genetic conditions, including Down syndrome, and to make decisions about whether or not to continue a pregnancy based on their personal circumstances and beliefs. The CDSS asserts that women should have access to fair, balanced and accurate information to support informed decision making when undergoing prenatal screening and diagnostic testing for Down syndrome.

The CDSS supports these following guiding principles to serve our position:

  • It is essential that the information is realistic, comprehensive and includes more than medical factors associated with Down syndrome. Information provided to a woman and her supporters should include details on the psychosocial, cognitive and educational aspects of parenting a child with Down syndrome.
  • The medical community should have access to and disseminate information about Down syndrome that is accurate, nondirective and helps expectant parents make informed decisions.
  • We understand that women undergo prenatal screening for Down syndrome for their own reasons and values, including advanced preparation for the birth of their baby, and some women choose to obtain the information to help them decide whether or not to continue with the pregnancy.
  • It is essential for a woman to be able to make a fully informed decision that is aligned with her values and to feel supported in that decision.

1 Rosseau, Francois et al. “PEGASUS-2 Personalized genomics for prenatal abnormalities screening using maternal blood: towards first tier screening and beyond” <https://www.pegasus-pegase.ca/pegasus/>

Please quote fully and reference the Canadian Down Syndrome Society

Reviewed and revised June 2020

View position statement as PDF