Having stuck my beak into the US election, it’s funny that I don’t feel the same need to blog about the current UK election campaign in the context of Down’s syndrome and special needs (maybe because there aren’t such, ahem, polarizing characters in the UK).
“Parents of children with special educational needs would have the right to a choice of school, like other parents. Ofsted, the children’s inspectorate, would be given responsibility for inspecting schools on SEN, information for parents would be improved and the tribunal process made easier, so that children with SEN and disabilities can access the auxiliary aids they need in schools. Other intiativies already under way will remain, such as the Achievement for All pilots to improve outcomes for children with SEN, funding for 4,000 additional teachers to undertake specialist dyslexia training by 2011, the requirement for SEN co-ordinators to have qualified teacher status by September, and the review of the supply of those teaching children with profound and multiple learning disabilities.”
“On special educational needs, the Tories would impose a moratorium on the “ideologically driven” closure of special schools, ending the bias towards the inclusion of children with special needs in mainstream schools.”
“Children would take a diagnostic assessment when they start school. The assessment would look at reading, comprehension, numeracy, communication and writing skills. The results would enable teachers to identify any extra support needed. The Lib Dems would also end the policy of trying to reduce the number of children educated in special schools and instead would encourage the co-location of special schools alongside mainstream schools. For those educated in mainstream schools, part of the extra £2.5bn investment would go to help teachers provide more individual support, one-to-one tuition and reading or maths recovery. Teacher training and the continuous professional development of teachers would also be improved to ensure that all teachers learn how to recognise SEN and provide appropriate support.”
One of those stands out for me, although not for the right reasons.
We’ve been really busty with various work, home, and illness-related issues recently. Here’s some recent news stories I haven’t had time to blog about:
Great news. It’s about time intellectually disabled athletes stopped being punished for the crimes of the intellectually able but morally corrupt.
An interesting perspective, and one that I have some sympathy for.
“Guidelines for scans that assess the risk of Down’s syndrome in later pregnancy are being drawn up in an attempt to improve their accuracy.” Good. See here and here for previous posts about the importance of accuracy.
An interesting read, whatever you might think about her.
“Medicines that target specific nerve cells in the brain could reverse poor mental function in people with Down’s syndrome, according to new research.”
The Guardian has published another interesting article about Down’s syndrome, this time about the question of inclusion within mainstream schools.
According to the article mainstream schools are increasingly demonstrating reluctance to make the necessary arrangements to help include children with Down’s syndrome.
“The Independent Panel for Special Education Advice (Ipsea)… which gives legal advice to parents whose children have special needs or disabilities, says three times as many children with Down’s syndrome have been refused a statement of special educational needs in mainstream schools this year compared with last.”
The issue of inclusion has been on our minds recently after the matter was covered in Channel 4’s Born to be Different, which follows the lives of a number of children with disabilities.
The most recent update saw the parents of a boy with Down’s syndrome realising that at the age of nine his learning difficulties were such that perhaps it would be best for him and his ongoing social life, to be educated in the future in a school that is specifically designed for his educational needs.
That decision matched with our early thoughts about our hopes for G’s education. Depending on his abilities we would like him to be included in mainstream education for as long as seems appropriate. However, if there were signs that he would be happier in a ‘special school’ as and when the delays in his education become more pronounced I would have no problems in making that change.
That is not an attitude shared by all parents of children with Down’s syndrome it would be appear. In the Guardian report one girl’s parents have reluctantly given up their “moral crusade for inclusion” in the face of reluctance to provide her with occupational and speech and language therapy.
While I would currently disagree with the idea that a child’s educational requirements should be the subject of a “moral crusade” it would also, unfortunately, seem that it is getting increasingly difficult to have the choice to include a child with Down’s syndrome.
Gillian Bird, director of education and information at Down Syndrome Education International, says more children with the chromosome disorder are being told they don’t need speech and language therapy, according to the Guardian, while Bob Black, education information officer of the Down’s Syndrome Association, says that ensuring that occupational therapy is on a child’s statement has become “increasingly difficult”.
“Schools are digging their heels in,” Black says. “We are getting the sense that schools, already overburdened with work, are feeling they have enough on their plates and don’t want to make adjustments for this group of children as well.”
I was too busy to comment here about Barack Obama’s description of his bowling as “like the special olympics”. Needless to say it was a real gaffe for anyone in a position of authority, let alone a President, but given how liberally phrases such as this are thrown around I think the Special Olympics had the right response in seeing it as an opportunity to educate.
I was reminded of the issue while reading Michael Bérubé’s post this morning about discussing the issue with some students at LSU, one of whom “said that she’d been hearing not merely that this should be a “teaching moment” with regard to cognitive disability but also that we should take the opportunity to revisit the term “Special” itself, in order to ask whether the word hasn’t become the kind of default euphemism that needs to be retired along with the R-word.”
I’ve previously mentioned my distaste for “special” as a euphemism and while I would agree with Michael that I don’t expect the Special Olympics movement to respond favourably to that suggestion, I would also agree with the student’s suggestion “that Special Olympians themselves take the lead in determining the appropriate language for cognitive disability.”
Of course that’s easier said than done but I do think there should be more direction given as to how words should be used correctly, rather than just advocating outright banning. It is perfectly possible, although perhaps not advisable, to use the word ‘retarded’ to legitimately describe a delay in cognitive ability.
It is also sometimes legitimate to describe people with cognitive disabilities as ‘special’ but to apply it as a blanket term to describe all people with cognitive disabilities is condescending an just as dehumanizing as describing them as ‘retarded’ in my opinion.
Researchers at The University of Arizona are developing a set of standardized tests with which to assess the potential cognitive ability of children with Down’s syndrome.
According to a report in UA News, “An accurate assessment of a child’s learning trajectory would enable parents and medical and education specialists time to develop appropriate strategies for learning and possible drug therapies.”
The standardized tests should enable the assessment of cognitive abilities against the spectrum of levels of ability seen in people with Down’s syndrome, rather than the general population.
The report quotes Lynn Nadel, a Regents’ Professor in the UA psychology department:
“We’re working on developing a standardized battery for 8 to 18 year olds, the adolescent range that is easiest to develop tests that have adequate controls for in the developing population. Once we have that figured out for that age range, we want to move in both directions.”
The test battery should be completed this year after a year and a half in development. A journal article is also near as well.
“We’re pretty much there, and should have a finished product that we will be happy to share with others doing the same thing around the world who want to use this standardized approach. People are pretty much waiting on us to finish.”
Standardized tests, he said, will also aid other researchers working on drug treatments and other kinds of early stimulation, especially for clinical trials that require before-and-after comparisons.
I have to confess to not knowing who Michael Bérubé and Peter Singer were until yesterday when I stumbled upon Bérubé’s account of his recent communication with Singer on the topic of the expected capabilities of people with Down’s syndrome.
Bérubé is (according to Wikipedia) the Paterno Family Professor in Literature at Pennsylvania State University, and the author of several books on cultural studies, disability rights, liberal politics, and debates in higher education. He also happens to have a son, called Jamie, who has Down’s syndrome, which has no doubt impacted his opinions towards disability without, it would appear, clouding his judgment.
Singer, meanwhile, is apparently an Australian philosopher, and the Ira W. DeCamp Professor of Bioethics at Princeton University, who specializes in applied ethics, approaching ethical issues from a secular preference utilitarian perspective.
Bérubé’s post describes communication between the two centered around Bérubé’s response to Singer’s characterization of the capabilities of people with Down syndrome.
According to Bérubé:
In his 1994 book, Rethinking Life and Death, Peter Singer famously claimed that “To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player”.
Bérubé also describes how Singer and fellow philosopher Jeff McMahan “believe that (to put it clumsily) cognitive capacity is a valid metric of moral status, so that (in McMahan’s example) if we agree that it is more consequential to kill a human being than to kill a squirrel, and if we don’t believe in stuff like “the soul” or “the divine spark” or “the ineffably human,” it follows that it is less wrong, all other things being equal, to kill someone with severe cognitive impairments than to kill you or me.”
If, like me, that perspective has got your hackles up, fear not because Bérubé is on hand to respond far more calmly and intelligently than I could hope to:
“I note that in the 1920s we were told that people with Down syndrome were incapable of learning to speak; in the 1970s, we were told that people with Down syndrome were incapable of learning how to read. OK, so now the rationale for seeing these people as somewhat less than human is their likely comprehension of Woody Allen films. Twenty years from now we’ll be hearing “sure, they get Woody Allen, but only his early comedies—they completely fail to appreciate the breakthrough of Interiors.” Surely you understand my sense that the goalposts are being moved around here in a rather arbitrary fashion.”
“Who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors? Likewise, this past summer when I remarked to Jamie that time is so strange that nobody really understands it, that we can’t touch it or see it even though we watch the passing of every day, and that it only goes forward like an arrow, and Jamie replied, “except with Hermione’s Time-Turner in Harry Potter,” I was so stunned I nearly crashed the car. I take issue with your passage, then, not because I’m a sentimental fool or because I believe that one child’s surprising accomplishments suffice to win the argument, but because as we learn more about Down syndrome, we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.”
“You’re looking for things people with Down syndrome can’t do, and I’m looking for things they can. We each have our reasons, of course. But I don’t accept the premise that cognitive capacity is a useful criterion for reading some people out of the human community, any more than you would accept the premise that we should grant rights to animals on the basis of whether humans think they do or don’t taste good with barbeque sauce.”
To put that last comment in perspective, Singer is a strong believer in animal rights.
It turns out that Bérubé has written a book, Life As We Know It: A Father, a Family, and an Exceptional Child, which is both a personal account of life with his son and an “investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of ‘disabled’ children”.
Needless to say, I’ve already ordered a copy.
A statement from Down Syndrome Education International (and others):
A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a “treatment” for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.
The full details add:
An organization called the Changing Minds Foundation is promoting a “new treatment for Down syndrome” that leads to “life changing” results. The “treatment” includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects…
There is no scientific evidence to support the use of any of this protocol with people with Down syndrome of any age in order to improve memory or any other aspect of cognition. Nor is there any evidence that this protocol is safe for routine use with people who have Down syndrome…
Scientific research has improved our understanding of Down syndrome considerably over the past 30 years. This has led to the better healthcare and education received by many people with Down syndrome today. Many scientists and organizations continue to work to improve our knowledge and understanding of effective ways to improve quality of life for people who live with Down syndrome.
Although the pace of further progress is often slow and this can be frustrating, only careful research and rigorous controlled trials can provide the evidence necessary to demonstrate that a therapy is useful and safe.
Yesterday I mentioned a study to compare two early literacy intervention approaches to educating young children with Down syndrome initiated by The Rocky Mountain Down Syndrome Educational Fund.
That fund was created in 2006 with a $500,000 matching grant provided by the Anna and John J. Sie Foundation, which has just announced a campaign to increase public and private research aimed at eradicating the ill effects of Down’s syndrome and committed $34m to create an institute to fulfill that goal.
According to that announcement:
“The Anna and John J. Sie Foundation is a catalyst for improving the lives of people with Down syndrome. The foundation is one of the leaders in funding programs and organizations that are dedicated to research, education, clinical care and advocacy for people with Down syndrome.In a little more than two years, the Foundation has committed more than $36 million in grants and endowments, including funding for the Linda Crnic Institute for Down Syndrome that will fully integrate the highest-quality basic, translational and clinical research, clinical trials, therapeutic development, medical care, education and advocacy.”
“The total budget for the National Institutes of Health (NIH) was $28.5 billion for FY 2008, but only $13 million was allocated for Down syndrome, the lowest amount for any of the conditions that NIH is targeting. Moreover, much of the public and private research appears to be focused on improving prenatal testing, not on researching the disorder.”
I can’t find a website for the Anna and John J. Sie Foundation and I don’t have time today to do a lot of research so I don’t know who they are but they certainly seem to be taking a lead in funding Down’s syndrome research and treatment.
According to this report on 9news.com:
“Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome…
The Linda Crnic Institute for Down Syndrome is named in honor of the University of Colorado Denver School of Medicine professor of pediatrics and psychiatry who died in a bicycle accident in 2004. Linda became a friend and mentor of Michelle and Tom Whitten when they received the prenatal diagnosis that Sophia would have Down syndrome. Linda has inspired the Whittens and the Sies to establish this global institute for Down syndrome that will provide the highest quality of basic, clinical and translational research trials, therapeutic development, medical care, education and advocacy.”
A report in ScienceDaily indicates that a study is underway at the University of Denver Morgridge College of Education to compare two early literacy intervention approaches to educating young children with Down syndrome.
The report states:
Researchers are seeking children in the Denver area, ages 2 1/2 to 5, to participate in the study, which will involve a two-day training session to be held at DU followed by an at-home intervention program in which parents will implement the program with their child for approximately 15 minutes per day for approximately 10 months.*
“There has been little to no research on how our children with Down syndrome learn, especially regarding reading and language,” says Michelle Sie Whitten, executive director of the Anna and John J. Sie Foundation and Advisory Committee Chair of The Rocky Mountain Down Syndrome Educational Fund. “There have been significant breakthroughs in terms of how children with other developmental disabilities learn, and I strongly believe that our kids deserve the same attention.”
An international team of experts is contributing to the study, including Sue Buckley from Down Syndrome Education International who has trained the researchers involved.
The report adds:
“What is so exciting and unique about this particular study is that scientifically based research on early learning intervention has been translated into applied research in areas such as autism, but never before in Down syndrome research,” says Karen Riley, assistant professor of Child, Family and School Psychology at DU, and the key investigator driving the pilot study. “In addition, we are attracting researchers for this study who have expertise in other developmental disabilities, and we are applying their knowledge to Down syndrome.”
This study was initiated by The Rocky Mountain Down Syndrome Educational Fund. It is underwritten by a $130,000 gift from The Rocky Mountain Down Syndrome Educational Fund, $10,000 from the McDonnell Foundation and $10,000 from the University of Denver.
According to a report in the Belleville News Democrat, a new study is underway to test whether drugs used to treat patients with Alzheimer’s could also improve the cognitive abilities of people with Down’s syndrome.
According to the report initial trials of drugs like Aricept and Exelon “appear to increase skill levels in children with Down syndrome in just a few months”. Details of the US-wide study are available here.
Organisers are looking for 2,000 participants at 200 sites across the US. Potential participants should be between 6 and 17 years of age, diagnosed with Down’s syndrome, and able to see, hear, communicate and walk.
The news story indicates that the drugs were originally given to patients with Down’s syndrome in an attempt to delay the onset of Alzheimer’s but were found to improve communication skills. It quotes Dr. John Boeren, who is behind the trials, in his explanation of the potential impact of even a small improvement:
“What they found is that over a relatively short period of time with careful testing, they saw an improvement in children’s communication skills, they saw some measurable improvement in understanding and they saw an improvement in activities of daily life,” Boeren said.
“It wasn’t tremendous. It’s not life-altering — yet, in a way it is. If you have a child that is maybe functioning on a 5-year-old level and you get him up to a level of a 7-year-old, that’s a big difference as far as what he can do for himself, how well he can communicate with the family and so on.”