New prenatal screening recommendations discriminatory : “People with Down syndrome enhance the learning, lives and citizenship in our schools, workplaces and families”

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New recommendations from the Society of Obstetricians and Gynaecologists of Canada (SOGC) discriminate against citizens with Down syndrome, says the Canadian Down Syndrome Society (CDSS). 

The recommendations, published in the Journal of Obstetrics and Gynaecology Canada (February 2007), indicate that all pregnant women should be given the choice to undergo prenatal screening for Down syndrome; previously, this was primarily extended to women over the age of 35.

A critical component of this screening process is the context, the language, and manner in which the conversations about the possibility of Down syndrome occur. The CDSS is greatly concerned that information provided to parents be clear, accurate and unbiased.

“We know that information is important for prospective parents to make the best decisions for their family. For families undergoing prenatal testing, it is critical that value-neutral information convey not just the challenges of Down syndrome but also the richly rewarding lives possible for those with Down syndrome,” says Krista J. Flint, CDSS Executive Director. “Parents have told me that they have heard that a child with Down syndrome would ‘ruin their life’ or ‘would never be toilet-trained’ – that’s not information; that’s bias.”

The CDSS hopes that just as the SOGC extends its recommendations for more Down syndrome screening, the organization will emphasize the importance of impartial information to prospective parents, and will push for the funding necessary to provide this training to medical practitioners.

Flint says that the CDSS is also gravely concerned about the possibility of a future without citizens with Down syndrome. “People with Down syndrome enhance the learning, lives and citizenship in our schools, workplaces and families,” says Flint. “My children’s children may inherit a world without Canadians with Down syndrome – and that’s not a good future.”

CariAnn Hougen, an adult with Down syndrome, says that the testing seeks to eliminate people specifically because they have Down syndrome – people like her. “The idea that this testing will eliminate people like me is horrifying,” says Hougen, chair of the Voices at the Table Advocacy Committee, a group of 11 adults with Down syndrome from across Canada who serve as an advisory committee for the CDSS.

“People with Down syndrome are going to school, working and getting married – it’s wrong to assume that we would simply be a burden to families, to the medical system or to the community.”

The Canadian Down Syndrome Society (CDSS) is a vital resource linking individuals, parents and professionals through advocacy, education and providing information on Down syndrome. The mission of the CDSS is to ensure equitable opportunities for all Canadians with Down syndrome.

Our future includes engaged citizens with Down syndrome

What is Down syndrome?

Down syndrome is a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender and socio-economic lines. One in every 800 live births in North America will result in a baby with Down syndrome. 

A person with Down syndrome has three copies of the 21st chromosome instead of two. The effects of this extra genetic material vary from person to person.

People with Down syndrome often share some physical features, but this varies greatly between individuals. Individuals with Down syndrome will look like their family members and will have their own unique personality.  Although the chance of Down syndrome increases with maternal age, 80% of children with Down syndrome are born to women younger than 35 years old. This is because younger women of childbearing age are more likely to have children than older women.

Down syndrome is not a disease, disorder or medical condition. It is wrong to refer to people with Down syndrome as “afflicted with” or “suffering from” it.

A popular generalization is associating people with Down syndrome as always loving, smiling or happy. People with Down syndrome are not all alike -- the diversity of personalities is similar to that of the general population.

Health issues

Individuals with Down syndrome may have a greater incidence of certain health complications than the average person. However, having Down syndrome does not guarantee the development of any particular health concern. Forty to 50% of children with Down syndrome are born with a heart defect. Many of these heart defects repair on their own, while some do require surgery to correct the problem.

Babies with Down syndrome often have stomach and bowel problems. These usually appear right after birth and can be corrected surgically. Thyroid, vision and hearing problems are also common in individuals with Down syndrome and are best treated if detected early. Appropriate medical care with proper detection and treatment for health concerns ensures the continued health for individuals with Down syndrome.

A little known fact is that having Down syndrome actually lessens a person’s chances of developing certain illnesses or health complications, including many cancers. Ongoing research is investigating how this occurs. Again, there is no guarantee that these will not occur and preventative measures, early detection screenings and healthy lifestyles are still recommended.

Education and learning

Down syndrome commonly results in an effect on learning style, although the differences are highly variable, just as physical characteristics or health concerns vary.

With assistance, opportunities exist for effective methods of teaching each individual. People with Down syndrome learn differently, but they do learn. As we find out more about how they learn and the best methods for teaching to their strengths, individuals with Down syndrome will likely learn more, faster and more efficiently.

The Canadian Down Syndrome Society asserts quality inclusion is the best model for educating students with Down syndrome. Students with Down syndrome have the right to life-enhancing educational experiences, which all children deserve. Diversity in the classroom enhances the learning, lives and citizenship of all students. Children with Down syndrome benefit from the experiences of learning with their peers in inclusive educational settings.

Looking to the future

The Down syndrome community in Canada and the CDSS have made great strides since our founding in 1987. We have seen advances in access to medical care, which enhance and save the lives of people with Down syndrome; life expectancy has more than doubled. Many people with Down syndrome live well into their 50s and 60s and beyond.

We have seen the benefits of early intervention programs, inclusion in school and work and the development of accessible resources for people with Down syndrome, families and the community.

Today, individuals with Down syndrome are going to post-secondary schools, working at real jobs and getting married. People with Down syndrome are now more often given the opportunity to be fully contributing members of society.

Despite the great advances made, much more needs to be done. We need to ensure the inclusion of individuals with Down syndrome in schools, communities and workplaces.

For more information on CDSS, visit: www.cdss.ca or contact: 1-800-883-5608.

Join the Canadian Down Syndrome Society for our 2008 conference in Ottawa: “Celebrating the next 20 years.” . Visit our website for upcoming details on how to register and participate.