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.
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.
Congratulations are due to DownsEd and the Sue Buckley Research Fund which has raised almost £1m of new funds for practical research and dissemination since it was formed a year ago.
The Sue Buckley Research Fund is focused on “improving education for people with Down syndrome by accelerating progress in scientific research and ensuring widespread access to evidence-based advice and information.”
Having read both yesterday I feel very humble and grateful that people like Sue and her son Frank and all the DownsEd staff have dedicated their lives to improving those of people with Down’s syndrome.
Here’s a short video about the work DownsEd does.
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.
Down Syndrome Education Internatational (DownsEd) has made a couple of announcements that happily enable me to keep my 31 for 21 obligations despite being stupidly busy.
First the charitable and research organisation announced plans for the first Down Syndrome Education and Research Center based in the USA. According to the announcement:
“The new center will be a joint venture with the Down Syndrome Foundation of Orange County and will accommodate expansion of the Foundation’s highly successful Learning Program. The center will be based in Orange County, California and is expected to open in early 2009. The new center will offer educational support to families through the Learning Program and will develop evidence-based, educational programs that families across the US will be able use to assist the children’s development.”
DownsEd also announced that it has been awarded a £0.5m grant from the UK Big Lottery Fund to test an adapted reading and language teaching programme for children who have Down’s syndrome.
According to the announcement, DownsEd will:
“conduct a multicentre, randomised controlled trial of an adapted reading and language teaching programme and (assuming the intervention is found to be effective) to develop a teachers’ manual and training programme to encourage widespread adoption in schools. Including the dissemination phase, the project will last four years.”