Down Syndrome

Amongst all my activities, I try to meet reasonably regularly with a range of community organisations to help keep me in better touch with some of the issues at community level. Even if there is no immediate issue I can assist them with, it is always useful for me to get a better understanding of their activities and concerns, and to get more aware of the specific matters their organisation works on.

I met recently with a representative from the Down Syndrome Association of Queensland (DSAQ). Last year marked the 30th anniversary of their founding. Like many not-for-profit groups who have been around for a while, the environment in which they work has changed considerably. The dilemmas of volunteerism versus professionalism, the choices and consequences involved in deriving funds from private donations, corporate sponsorship or government funding and the issues like increased accountability requirements (and potential liability costs) are all very different for many community based groups compared to 10 or 15 years ago.

But one thing that hasn’t changed has been the need to increase public awareness and understanding about many of the issues these groups work on. Like many things in life, unless you are directly touched by an issue, you often don’t know much about it. Much of the information below has come from people who have lived with and cared for people with Down Syndrome.

Every week in Queensland, at least one baby is born with Down Syndrome. Thirty years ago, when the DSAQ was formed, families were often encouraged to institutionalise children with Down Syndrome. There was minimal access to education and limited health care. Life expectancy for such children was much less than now. This report cites a US study which found it had increased from 25 years of age in 1983 to 49 years in 1997. I understand it has continued to increase since then.

There are more facts at this link. “All children with Down Syndrome have some degree of intellectual disability, although this usually falls within the mild to moderate range. A delay in developing milestones is common and children have difficulty learning. However, they can and will learn.”

One refrain I regularly hear from a range of different community groups that work on disability issues is the failure of education system to adequately assist and work with children who are different from the norm. I appreciate it can be difficult to fully meet the needs of children, let alone the expectations of parents, but if there is any time when it is worth putting in maximum resources, it is in the development years of children. The benefits gained from the extra support in the developmental stages will pay off for the entire community down the track.

A person with an intellectual disability should have equal access to health, education and employment, and should still be able to live a fruitful life. People with Down Syndrome may share a disability, but they still have unique personalities, abilities, skills and interests. The impact of their disability often depends as much on community attitudes and support as it does on an individual’s level of ability.

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9 Comments

  1. Senator.It will probably be assessed that the following comment of mine is extreme maybe uncaring and above all else unproveable.I do not think Downs Syndrome is now anything else but the reluctance of the World wide medical profession not to look closely at neutrimedics,and more especially,some work that has turned the whole question of wether Downs needs describing at all.A very large Texas based firm that doesnt seek to advertise itself and insures all those who use its literature observe the nature of countries laws where its products are sold regularly,has found by introducing a certain sugar into the diet that kids abilities to learn are normal with this disease.Small experimental example so far,and when more cases give further evidence this info. will become more important in Australia,as well as the sugar.Miracle cure,no! Unless you believe in miracles.I will also wait because that will prove I am not confused,and perhaps one day I might be able to afford it.This form of American capitalism needs Australian support ,maybe even officially,as in approved medicine status and subsidy.Whereas there is just a rip off supporting other medicines but not much for Downs sufferers,who are normally very pleasant feeling humans.

  2. Sort of off-topic. We had a trivia question recently “What is the correct spelling of Down Syndrome?” Most of us answered Down Syndrome, but the answer was given as Down’s Syndrome and the host was not for budging.

    Any chance you could legislate against quarrelsome trivia hosts, Senator? Or would that be a triffle triffling?

  3. The Queensland government has a very long track record of failing to meet the educational needs of Special Needs children.

    The term “Special Needs” covers everyone from gifted students, children with various learning disabilities, to those suffering from specific syndromes and physical disabilities.

    In the 1960s, if an ordinary child failed to learn in the classroom, he/she went full-time to a Special School.

    But for decades now, a Special School education has only been available to the profoundly disabled.

    Most other needy students get lumped into Special Education Units attached to ordinary primary schools, or are left in mainstream classrooms where very little help is provided.

    Tony T:

    The trivia night host was either wrong or out of date.

    Other medical terms used to describe Down Syndrome are Mongolism (due to facial appearance), and Trisomy 21 (describing the chromosomal defect).

  4. I think I might of meant cerebral palsy,but I have to contact someone…I still do not believe the medicoes are enlightening people on this matter,and I would like to see clinical biofeedback training,ginseng, and high end,experiences for these people,good clean air,taught surfing, in a limited way, canoeing,and all those matters of things that appeal to Biddulph.Much talk goes on about the skill of birds in understanding language than how to boost the confidence of DS. people to normal permanently.And what about the PM.Science prize winner claims of improving intelligence by applied magnetic infuence..some time back? Off the Radar!They should be taught regularily cartooning skills,and be able to plagiarise the cartoons of others.I am always suggesting floatation tanks as learning potential and decompression chamber research,and what about Butyeko breathing, diaphragmatic breathing to tweak the capacity for learning and language.All no go areas until we have people in government wanting reults that are not necessarily subject to skeptic hysteria but ultimately acceptable because of noticeable change.

  5. The special ed bureaucracy perpetuates the myth that students with disabilities are somehow not full human beings. Therefore it is desirable to cluster them together and segregate them from mainstream society lest they disrupt, disturb and discomfort us.

    Parents can fall victim to this overwhelming tide of negativity and accept the lies of the professionals. Do not be seduced by the special places; they are not real. Dream real dreams, develop a real vision of a real life for your child.

    The new U.N. Convention on the rights of people with disabilities promotes full inclusion. It is the only fair and just way foward

  6. I happened upon your blog by way of a google search today.

    “A person with an intellectual disability should have equal access to health, education and employment, and should still be able to live a fruitful life.”

    Well said. As the mother of a two and a half year old daughter who has a little bit of something extra one her 21st pair, I agree with you 100%.

    Education and awareness is so important to the future individuals with DS. Many groups are working on this effort in the United States. One such group of mothers can be found here: http://giftsds.segullah.org/

    We are currently awaiting the release of the second edition of our book this summer.

    Thank you for posting about this important topic. It is appreciated.

  7. If you are interested in the experiences of people touched by Down Sydnrome, I recommend you follow this link, which is billed as “the most complete listing of bloggers writing about life with Down syndrome”,which “includes families of all kinds, from all walks of life, at all points of the compass.”

    (the link is from Rebecca, who made the comment above, but I thought I’d draw specific attention to it, as many people who might be interested wouldn’t necessarily know to follow the link on her name)

  8. phil:

    “Experts” from the education system still cannot differentiate a gifted student from a horse’s backside.

    There are no gifted people among them – but they do excel at clonal mediocrity.

  9. Thank you for the link drawing attention to my blogroll. I have spent more than a year compiling it.

    I am not currently blogging myself, but I do keep up with all things DS related in the blogging world.

    Cheers.

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