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Survey to help new parents adjust to Down’s syndrome diagnosis

Posted in Attitudes to disability, Support services by Matt at WelcometoIllinois on December 16, 2009

“Texas Tech University and Kansas State University researchers are seeking participants in an online survey to help develop support information and resources for parents of children with Down syndrome and the professionals who work with them” reports newswise.

The survey is available here and doesn’t take long to complete, depending on how much information you feel like sharing.

Researchers hope to gather information on how parents coped with their child’s diagnosis and how it impacted their relationship and outlook on the future in order to “pinpoint common practices in families who have successfully adjusted to a Down syndrome diagnosis”.

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Research contradicts Down’s syndrome stereotypes

Posted in Attitudes to disability, Scientific research, Support services by Matt at WelcometoIllinois on November 3, 2009

Anyone who’s had anything to do with Down’s syndrome will have heard the stereotypes about people with DS: they’re very loving; they’re very happy; they’re very stubborn. G had been alive less than five minutes before I was told by a paediatrician that “They are very happy babies”.

Is there any truth in the suggestion that all people with Down’s syndrome share certain personality traits?

Recent research would suggest not, according to a blog post I just stumbled upon written by Pierce J Howard PhD, Managing Director of Research and Development at the Center for Applied Cognitive Studies in Charlotte.

Howard and his colleagues have taken their personality assessment for adolescents, and translated it into a form to rate the personalities of people with Down’s syndrome. The early results suggest that people with Down’s syndrome – or Down’s syndrome individuals (DSIs) as the research put it – exhibit more varied personalities than developmentally typical individuals (DTIs).

“The standard deviations for N, E, O, and A are higher among DSIs, suggesting that there is more variability in these four areas than is found among DTIs—more extremes in behavior. More extremely neurotic individuals, and more extremely calm ones; more extremely extraverted as well as more extremely introverted; more extremely imaginative and more extremely literal; more who are extremely deferential, and more who are extremely defiant, in comparison to the DTIs.”

As Dr Howard goes on to explain, “the only supertrait that suggests LESS variability among DSIs is C, suggesting that DSIs as a group show less extremely ambitious behavior, as well as less of the opposite”. It would be interesting, as Rickismom notes in the comments, to research whether that potential lower will to achieve is natural or the result of “a society-induced resignation or hopelessness”.

The mean responses do suggest that people with Down’s syndrome are more likely to exhibit certain personality traits such as:

– “a somewhat lower level of creativity, complexity, and comfort with change”
– “a noticeably lower preference for perfectionism, focus, ambition, concentration, and methodicalness”
– “a somewhat stronger tendency to defer to others and be comfortable in the background”

However, when it comes to the big stereotype, that of happiness, the research suggests that people with Down’s syndrome are no happier than anyone else:

“the means on N and E show no difference between the DSIs and the DTIs, suggesting that levels of happiness (positive emotions dominating negative emotions) are similar.”

As Dr Howard explains, if continued research supports these early results it could have a significant impact in the way in which support services are provided to people with Down’s syndrome.

“Historically, people have assumed that DSIs were all similar behaviorally—that they all like repetition, were all moderately sociable, and so forth. This data clearly challenges those assumptions. Hence, among DSIs, we need to take individual differences into account with respect to career choices, roles in group homes, managing conflict, teaching/learning style, relationship management, motivational strategies, therapy modes, and, in short, we need to employ the same individual difference sensitivities with DSIs that we use with our developmentally typical friends, family, and associates.”

Down’s syndrome and health care reform

Posted in Politics, Support services by Matt at WelcometoIllinois on August 12, 2009

Here are some excerpts from a statement by the US National Down Syndrome Congress on Health Care Insurance Reform. They really speak for themselves:

“People with Down syndrome have been and continue to be discriminated against with regard to access to health insurance, solely on the basis of the diagnosis of Down syndrome and without consideration of their individual health status or health histories.”

“For those people with Down syndrome who do have congenital or other health conditions requiring medical intervention, insurance companies have denied them access because of their preexisting conditions.”

“The whole issue of access to health insurance places an extraordinary burden on families and persons with Down syndrome and other disabilities. Families and adults with Down syndrome are forced to consider issues of obtaining or maintaining health insurance coverage above career and other significant life decisions. Even when they are able to access health insurance coverage, the financial cost can be exorbitant.”

This is not a new campaign for the NDSC. The position paper that these excerpts were taken from was published in 1995.

See also: How G survived the National Health Service death panels

How G survived the National Health Service death panels

Posted in Attitudes to disability, Support services, Therapeutic treatments by Matt at WelcometoIllinois on August 8, 2009

Sarah Palin has let loose on the topic of health care reform. In her latest Facebook outburst, as reported by Patricia E. Bauer among others, she stated:

“The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care. Such a system is downright evil.”

Absolutely bonkers. I’m not going to bother pointing out the numerous factual inaccuracies in that statement. Fact Check points out that “nothing in the legislation would carry out such a bleak vision”, while PolitiFact rates the statement “Pants on Fire!”

What I will do, as someone who lives in a country with government-supplied health care, is confirm that there are no death panels on the National Health Service – at least not that I am aware of. What we do have, however, is multiple health visitors, portage workers, speech and language therapists, and physical therapists, not to mention heart scans, hearing tests, and learning assessments, all supplied free of charge and regardless of our income. Had G needed it, he would also have been able to have an operation to fix any problems associated with his heart or any other organs, again free of charge regardless of our income.

As a writer on Huliq news points out, “what Sarah Palin fails to note, or perhaps does but intentionally omits, is that such a ‘death panel’ of bureaucrats already exists. It’s called the insurance companies, and the employees at them which deny health care left and right.”

The NHS isn’t perfect, but having read numerous accounts of parents hit with massive hospital bills for the delivery of their children and the massive cost of health care insurance for children with disabilities, given the choice between the UK and US systems I know what I’d pick.

Putting Down’s syndrome statistics in context

Posted in Attitudes to disability, Screening, Statistics, Support services, Surveys by Matt at WelcometoIllinois on November 30, 2008

Frank Buckley, the CEO of DownsEd, has written an excellent post on the recent debate around Down’s syndrome statistics and attitudes to Down’s syndrome in the UK.

In it Frank covers the accuracy of the statistical data, the relevance of the Down’s Syndrome Association’s survey of parental attitudes, public policies, attitudes within the NHS, the provision of unbiased information during the screening process, and ethical considerations.

There’s much too much in the post to be summed up in one or two quotes, so I’d recommend reading the whole post. I have a feeling I’ll be coming back to it again and again.

Charities lead changing attitudes to Down’s syndrome

Posted in Attitudes to disability, Support services, Surveys by Matt at WelcometoIllinois on November 29, 2008

Ignoring the questionable reporting of medical statistics for a moment, there is no doubt that the Down’s Syndrome Association’s survey of parents indicated improved attitudes towards Down’s syndrome in the UK.

“Initial results show that 25 per cent said they already knew people with Down’s syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down’s syndrome.”

An article in The Times today says responsibility for that lies with charities like the Down’s Syndrome Association and Mencap.

“The Down’s Syndrome Association, along with Mencap, has been instrumental in this change – by putting the emphasis on changing attitudes, facilities and support in society. It’s done this to the deliberate exclusion of research into the causes of learning disability, on the basis that it had to send out a clear message about the worth of people affected,” writes Simon Crompton.

“With giddying amounts being spent on research into stem cell and other therapies and new diagnostic tests for congenital conditions, the Down’s story is a reminder that sometimes we can get too carried away with the science of prevention, forgetting that some conditions are only severely disabling because we’re not investing enough in supporting families affected by them,” he adds.

Down’s syndrome does not discriminate

Posted in Attitudes to disability, Support services by Matt at WelcometoIllinois on November 14, 2008

“We aren’t monsters. People look at us as if we were from another planet and are afraid to stay by our side,” he said with a voice full of bitterness.

“I want to share with other children the same hopes they have and live in an environment that sees us as children with some health problems and not ogres.”

Those words were spoken by Younnis Mohammad, an Iraqi child living with an extra chromosome, according to this report from IslamOnline.net.

It’s a really compelling article that demonstrates that while people with Down’s syndrome are discriminated against the world over, Down’s syndrome itself does not discriminate based on creed or colour.

Also it’s good to see something related to Down’s syndrome other than the false stories about women with Down’s being used as suicide bombers.

Here are some more comments, this time from Ali Hazeem Tareek.

“I hope one day I will be able to walk in the streets and no one will keep looking at me as if I was an abnormal person,” he said.

“I have feeling, I feel pain and sorry. The only thing I want is an opportunity to share the society with dignity.”

I think this is one of the few news articles I have read about people with Down’s syndrome that leads with the perspective of such a person, rather than a carer or medical professional. Unfortunately, while children like Ali and Younnis are better cared for than in other countries, like everyone else they are suffering for living in a war-torn country.

The report continues:

“Abdul Lattif, who has a Down syndrome child herself, noted that these children need professional help.

“Professionals like dentists, speech therapists, psychologists and neurologists are essential to the development of these children but they aren’t available,” she explained.

“And when we can get someone to help us, it is just for one visit while they need a constant follow up.”

The lack of aid has forced many care centers to reduce daily food quotas for the children.

“We don’t have choice here,” regrets Nuria Sabah, the director of House of God’s Angels.

“We want to do a voluntary work but for that you need support that is inexistent.

“I hope the government and big NGOs can feel our need and give more help because if the situation continues like this, we will be forced to close down and send these kids home where for sure they won’t be able to stand up alone for long.”

The government says it is planning future projects for Down syndrome children.

“We know how important is to have a special care for all those children with Down syndrome,” Health Ministry official Abeer Salam told IOL.

“However, the ministry is suffering with lack of investments in many areas, especially in projects department but we are hoping that after provincial elections, the central government will give more support to social projects rather than involve only with politics.””

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Feeling lucky

Posted in Attitudes to disability, Support services by Matt at WelcometoIllinois on November 7, 2008

Two articles this week about the treatment of people with disabilities in Bulgaria and Turkey has given me pause for thought about how lucky we are to live in a society that cares for the disadvantaged.

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Legal action and ante-natal screening

Posted in Diagnostic testing, Legal issues, Screening, Support services by Matt at WelcometoIllinois on November 5, 2008

A report from Canada.com on the potential for doctors to face legal action if they don’t provide genetic testing to all pregnant mothers highlights the need for adequate processes and support.

    “Canadian physicians may face more wrongful-birth lawsuits if they don’t start adhering to guidelines introduced one year ago recommending all pregnant woman be offered prenatal screening for chromosomal abnormalities, according to an article to be published today by the Canadian Medical Association Journal.

    But one of the authors says not all doctors are aware of the guidelines, nor are there enough medical practitioners in Canada to provide the lengthy counselling pregnant women should be getting.”

It’s pretty sad to think that someone’s reaction to having a baby with Down’s syndrome is to sue the doctor but if screening tests are being mandating without enough thought being put into whether the medical and counselling staff are available then legal action is somewhat inevitable.

Amendement 51 rejected

Posted in Politics, Support services by Matt at WelcometoIllinois on November 5, 2008

Sometime ago I asked the question “Would you pay more tax to help disabled?” in relation to Colorado’s proposed sales tax increase to fund disability services.

For Coloradans it seems the answer was ultimately “no”. This report in the gloriously named Steamboat Pilot & Today states that they voted against Amendment 51 by ratio of nearly 2-to-1.

The report blames economic conditions for the result.

    “The economy was the issue,” said Marjio Rymer of ARC of Colorado and chairwoman of the coalition to End the Developmental Disability Wait List. “We couldn’t have predicted the fall of the world economy, but we will be back.”

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