Positioning of the Canadian Down Syndrome Society

ABOUT CDSS / POSITIONING

The Canadian Down Syndrome Society is Canada’s voice for people with Down syndrome and their community of family members, friends, and those who work to support them. Below are position statements and papers on a variety of topics related to Down syndrome; they explain CDSS’s view on special issues and subjects facing our community.

Value-Neutral Language

Language is powerful. We have the power to choose words that are positive or negative, words that include or exclude people in our communities, words that support a person or belittle them. The language we use about others can promote stereotypes that are demeaning.

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

To emphasize abilities and not limitations, the following language is considered acceptable when talking about individuals with Down syndrome. Choose to use words that put a person first, not their disability.

Guiding Principles

  • Use people-first language that describes who a person IS, not what a person HAS
  • Avoid demeaning phrases such as suffers from or afflicted with Down syndrome
  • Avoid outdated and derogatory terms such as retarded, handicapped, and challenged
  • Down syndrome is not a disease. Do not refer to it as such.
  • Avoid using stereotypes when referring to people with Down syndrome, e.g., “people with Down syndrome are always happy”
  • Do not mention that a person lives with Down syndrome unless it is relevant to the conversation

Talking About Down Syndrome

NOT ACCEPTABLE

ACCEPTABLE

BACKGROUND

‘Down’s’, ‘Down’s syndrome’

‘Down syndrome’

Although John Langdon Down classified Down syndrome, he did not have Down syndrome, and therefore it is not possessive as in ‘Down’s’.

‘Down’s kids’, ‘Down syndrome person’

‘A person with Down syndrome’

A person should not be defined by their disability. The emphasis should be placed on the person.

‘Suffering from’ or ‘afflicted with’ Down syndrome

‘Living with Down syndrome’ (if relevant to the conversation)

Words like ‘suffering from’ and ‘afflicted with’ are demeaning. People who live with Down syndrome lead fulfilling lives; many people with Down syndrome attend college or university, work and get married.

Medical Care and Treatment

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 Down syndrome, in and of itself, is not a medical condition and therefore should not prohibit a successful application for or access to medical services, insurance and treatments.

Position Statement on Medical Care and Treatment
Updated and Approved 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of CDSS to always have position statements that are the most relevant and up to date.

Supported Employment

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 knows that people with Down syndrome are competitively employed in their communities. Individuals with Down syndrome should be supported to make informed choices about work and careers and have the resources to seek, obtain, and be successful in community employment with fair wages for fair work.

ISSUE

Many individuals with Down syndrome are either unemployed or underemployed, despite their demonstrated ability, desire, and willingness to engage in meaningful work in the community. Of those employed, many have had no choice but to work in sheltered, segregated programs that separate people from their communities. Whatever the setting, few have had the opportunity to earn much money, acquire benefits, advance their careers, or plan for retirement. Without appropriate education, career development, job training, technological assistance and support, people with Down syndrome are unable to enjoy the benefits of employment and life as full Canadian citizens.

POSITION

People with Down syndrome should be supported in preparing for careers and have the opportunity for jobs alongside other citizens based upon their preferences, interests, and demonstrated strengths.

Employment Opportunities Should Include:

Ongoing career planning, job advancement and retirement planning.
Flexible and comprehensive individualized supports to ensure the person’s employment success.
Wages and benefits that meet labour standards.
Provided access to opportunities that include micro-enterprises, small businesses and self-employment.

Employment Preparation Should Include:

Transitional planning and social skill development, starting early in secondary education settings and continuing through graduation.
General and specific job skill training and actual paid work experiences in the community (This could include Co-op and paid internship opportunities).
A comprehensive plan for transition to adult life, including retirement planning, housing, transportation and medical.
Accessible transportation options.
In addition, employed individuals with Down syndrome must have the opportunity for continued education or specialized training to enhance their marketability and to help them advance in careers or chosen areas of interest.

GUIDING PRINCIPLES

The Canadian Down Syndrome Society believes in the following supported employment guiding principles:

Work enhances an individual’s quality of life.
All employed persons should receive a fair and equitable rate of pay. Compensation for skill and effort expended by employed individuals will be minimum wage or better.
All employment will meet all requirements of applicable labour standards.
Young people will have access to after-school and summer employment that will provide them with work experience and help them explore career options.
People have a range of choices in the work that they do.
Job choice and supports will be identified though individual planning.
People will not be ‘ghettoized’ in job sectors because of their disability or label.
Required accommodations and supports for individuals will be available and portable.
Supports will be provided on an on-going basis for as long as a person may require them.
Natural supports will be used to the greatest extent possible.

KEY ASSUMPTIONS

All work has value
All people have the opportunity to work in the community.
The most appropriate place for people to learn about the job is on the job.
People have many jobs over the course of their lives.
Jobs promote lifelong learning and career development/ advancement.
People have the right to fail. We all learn through mistakes.

Immigration

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, in and of itself, is not a medical condition and therefore should not prohibit a successful application for immigration.

Position Statement on Immigration

Updated and Approved November

Edited – February 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of CDSS to always have position statements that are the most relevant and up to date.

Education

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 inclusion as the best model for education of all students, including students with Down syndrome; In this way, ALL students learn together, diversity is valued, personal growth and citizenship enhanced, and equity experienced.

  • The following statements describe optimal educational principles:
    Inclusive education in neighbourhood schools.
    Individualized instruction that is carefully planned to meet specific needs without compromising the feeling of membership and belonging in the classroom.
    Families as integral members of the education team in all planning and decision-making.
    Appropriate professional, classroom, teacher, peer and community supports.
    Respectful, supportive and caring environments where students participate as full citizens in their school communities.
    Instruction that reflects current professional knowledge and best practice as supported by recent research.
    High expectations for all students and teachers who treat each student as a valuable, and contributing individual.
    Educators who are prepared to advocate excellence in education for all students, recognizing that excellence is not synonymous with improved achievement on standardized tests.
    People with Down syndrome are life-long learners and should have access to post secondary learning opportunities, continuing adult education and transition to work supports.
    Special education is a collection of supports and services; It is not a place.

Position Statement on Education
Updated and Approved 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of CDSS to always have position statements that are the most relevant and up to date.

Down Syndrome Defined

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is estimated to be present in approximately one in 800 births in Canada.

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.

The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome. The effects of that extra genetic material vary greatly from individual to individual. Persons with Down syndrome may be predisposed to certain illnesses and medical conditions that are also present in the general population. The presence of extra genetic material does not guarantee their development. Timely and accurate diagnosis and appropriate treatment of illnesses and conditions improves both length and quality of life; the same as would be expected in the population without Down syndrome. Vigilance on the part of health care practitioners is required to identify and treat any of them if they arise.

Studies show that people with Down syndrome are less likely to develop certain other illnesses and medical conditions. The presence of extra genetic material does not, however, guarantee that they will not develop.

All people with Down syndrome learn, develop and achieve. People with Down syndrome have developmental differences that affect their learning style. It is important to identify the best methods of teaching each child. Ideally, through early intervention programs, this begins soon after birth.

The greatest challenges for many individuals with Down syndrome are perceptions that underestimate their potential and abilities.

Position Statement on Redefining Down Syndrome
Approved 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of CDSS to always have position statements that are the most relevant and up to date.

Prenatal Genetic Screening and Testing

Friday, 17 July 2009

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 prenatal screening and testing for the purposes of identifying Down syndrome is accompanied by numerous ethical concerns.

CDSS asserts that to ensure fair, balanced and informed decisions with regards to prenatal screening and testing:
Physicians providing obstetric care must have a responsibility to ensure that women receive unbiased, accurate, current and value-neutral information regarding Down syndrome prior to presenting them with the choice to undergo screening or testing.
An appropriate period of time is provided to prospective parents between receiving information and making a decision whether or not to proceed with testing.
The decision whether to undergo screening or testing rests solely with the woman.
The role of the physician or medical practitioner is clearly understood to provide information, and never to influence a woman’s decision. If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not directly or indirectly pressure patients to undergo undesired screenings.

Practitioners providing obstetric care have a responsibility to provide information about the procedures and related medical and ethical implications as early as possible in pregnancy. This information must be current, factual, balanced, and value neutral. [Skotko B. Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics. Jan 2005 (Vol. 115, Issue 1, Pages 64-77)].
The decision regarding the progression of a pregnancy must clearly remain with the family. It is the woman’s absolute right to continue the pregnancy.
If a determination of Down syndrome occurs, the opportunity to meet a family that includes a person with Down syndrome should be facilitated by the acting health care practitioner.
Given the 2007 Society of Obstetricians and Gynecologists Canada (SOGC) recommended guidelines for Prenatal Screening for Aneuploidy, both the SOCG and federal and provincial governments have a responsibility to ensure that all screens, tests, information and related counseling are readily available, funded and supported within provincial health systems and regional health authorities as part of a comprehensive prenatal strategy.
We believe that the widespread use of genetic screening for the purpose of identification and termination of fetuses with Down syndrome may adversely affect the quality of life for all persons with Down syndrome and threatens the diversity and vitality that people with Down syndrome and other disabilities currently contribute to many Canadian communities.

We advocate that the primary goal of prenatal genetic testing should not be to reduce the birth prevalence of Down syndrome in the population but rather to provide opportunities to improve prenatal and delivery care for the mother and baby.

Position Statement on Prenatal Genetic Testing
Updated and Approved 2007

Please note: This position statement is not a static document. As we continue to gather research, this statement is subject to change in order to reflect new findings. It is the goal of CDSS to always have position statements that are the most relevant and up to date.

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