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.
Rahm Emanuel has been rightly criticized for his description of liberals activists as “f—ing retarded”, including a call from Sarah Palin for him to be fired as White House chief of staff.
“Just as we’d be appalled if any public figure of Rahm’s stature ever used the “N-word” or other such inappropriate language, Rahm’s slur on all God’s children with cognitive and developmental disabilities — and the people who love them — is unacceptable, and it’s heartbreaking.”
That’s just what you’d expect when it comes to the self-styled “friend and advocate” of special-needs families. Of course the fact that Emanuel’s comment enabled Palin to criticize her political opponents had nothing to do with it.
Palin also appeared to have taken a dim view of Rush Limbaugh’s repeated use of the word “retard” in discussing the Emanuel controversy on his radio show.
Here’s some edited highlights of Limbaugh’s “satire” for those that missed it. The full transcript is also available.
“But our politically correct society is acting like some giant insult’s taken place by calling a bunch of people who are “retards,” “retards.”” “So now there’s going to be a meeting, there’s going to be a “Retard” Summit at the White House.” “Obama is taking a short bus, little yellow bus full of “retards” — “F-ing retards” — to Las Vegas for the weekend.”
Limbaugh was clearly taking the opportunity to draw attention to the inappropriate language used by Emanuel, but his obvious revelry in doing so suggests, and the following discussion with a caller to the show demonstrates, that he simply does not get it.
CALLER: The reason they were so offensive is because by using the term “retarded” or “retards” as a term of opprobrium or derision is insulting to all persons with mental disability… I just felt as though your comment, it seemed to me to underline the idea that the insult was to the Democrats, and it’s not, the insult is to the people with disabilities.
RUSH: No, no, no. I know the insult is to retarded people but those are not my words.
Either way, as Palin’s spokesperson stated “it doesn’t matter who says the “r” word: it should no longer be part of our lexicon”.
Except if the person who says its happens to be an influential opinion leader in the conservative movement, it would seem. “Rush Limbaugh was using satire,” said Down’s syndrome’s very own “Mother Superior” on Sunday.
“I didn’t hear Rush Limbaugh calling a group of people whom he did not agree with “f’ing retards.” And we did know that Rahm Emanuel — it’s been reported — did say that. There’s a big difference there.”
She’s right, there is a big difference between someone using an off-hand remark, albeit a highly inappropriate one, in a private conversation and then apologizing for doing so, and someone repeatedly using a phrase they apparently understand to be offensive in order to score cheap political points.
I am in Boston this week with work and with a bit of spare time on my hands today went to visit the John F Kennedy Presidential Library and Museum.
It is a fascinating and thought-provoking museum that does well to squeeze in all aspects of the achievements of not Just JFK but the other members of the Kennedy family as well.
With so many achievements to cover I was surprised to see the inclusion of children’s health issues and mental disability. While I am well aware of the effort that JFK’s sister, Eunice Kennedy Shriver, put into supporting people with mental disabilities – including the Special Olympics – I was not aware that President Kennedy had also gone out of his way to promote better treatment for children with mental disability.
As this information from the Arc of Massachusetts indicates, President Kennedy in fact drove a plan to create A National Plan to Combat Mental Retardation in the early 1960s.
It is a testament to how important this issue was for President Kennedy that the National Plan and its impact was given prominence in museum alongside more celebrated issues such as the civil rights movement, the Cuban Missile Crisis, the space program, and of course his assassination.
I would definitely recommend a visit to the John F Kennedy Presidential Library and Museum – it is great value for money and provides a fascinating insight into the life and legacy of a truly inspirational man.
“We can say with some assurance that, although children may be the victims of fate, they will not be the victims of our neglect.”
Congresswoman Cathy McMorris Rodgers gained a lot of respect from me for her involvement in the Congressional Down Syndrome Caucus and its role in promoting the US Prenatally and Postnatally Diagnosed Conditions Awareness Act.
However, McMorris-Rodgers has blown it by jumping on the Sarah Palin’s “death panels for Down syndrome” bandwagon.
According to CNN: “Surrounded by a group of parents clutching pictures of their special needs children, two Republican members of Congress stood in front of the Capitol on Tuesday and warned that President Obama’s proposed health care system will lead to a rationing of care for children with disabilities.”
Like Logan at Disposable Brain, I would like to draw your attention to the following:
“McMorris-Rodgers could not point to any specific language in the legislation currently before Congress that would deny health care to disabled children.”
I cannot believe that people like Palin and McMorris-Rodgers are not being held responsible for wasting people’s time by misdirecting such an important debate despite having no evidence for their claims whatsoever.
I previously noted that the US National Down Syndrome Congress is in favor of health care reform, noting that the current system does not adequately serve people with Down’s syndrome.
Meanwhile Brian Skotko, clinical genetics fellow at Children’s Hospital Boston, has expressed concern about new non-invasive pre-natal testing techniques for Down’s syndrome and other conditions, asking: “As new tests become available, will babies with Down syndrome slowly disappear?”
“Research reviewed by Skotko showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005 in the United States. In the absence of prenatal testing, researchers would have anticipated the opposite – a 34% increase in births – due to the trend of women waiting longer to have children; known to increase the chances of having a baby with Down syndrome.”
Skotko also suggested some practical steps that could be taken to help reverse this situation, such as “Develop guidelines around how health professionals should deliver a diagnosis of Down syndrome” and “assemble information packets that give accurate, current information on Down syndrome”.
The second of this is of course one of the major deliverables of the Prenatally and Postnatally Diagnosed Conditions Awareness Act, and the Science Daily report notes that such an information pack has recently been selected by the National Down Syndrome Society and the National Down Syndrome Congress.
Some time ago I lamented the fact that the UK didn’t have an equivalent of the US Congressional Down Syndrome Caucus.
The Down’s Syndrome Association reports that has now been put right with the formation of All Party Parliamentary Group (APPG) on Down’s syndrome including 26 MPs, the DSA and DownsEd “to inform MPs and Lords about many of the issues facing people with Down’s syndrome and their families, and ways in which policy changes can improve their quality of life.”
The DSA reports that the APPG has agreed to supports its Tell it Right campaign to improve the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome via a UK equivalent of the US Prenatally and Postnatally Diagnosed Conditions Awareness Act.
The DSA also reports:
“As well as establishing current public funding for research (medical, social and educational) the Group have also agreed to work to establish two National Working Groups, the first to develop a multi-disciplinary, co-ordinated research strategy for Down’s syndrome, and the second on Best Practice Standards in health and medical care, early development, education (including adults), adult social care and employment support.”
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.
June 8-14 is Down’s Syndrome Awareness week in the UK and I just found out that the Down’s Syndrome Association’s campaign this year is a topic that I have written about often: improving the quality of information about Down’s syndrome that is given to parents after they have received a prenatal or postnatal diagnosis of Down’s syndrome.
As the announcement states:
“Research from the Down’s Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down’s syndrome.
Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information.
We think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down’s syndrome or other prenatally and postnatally diagnosed conditions.”
I have previously mentioned that we were luck enough to receive a huge amount of incredibly useful and supportive information about Down’s syndrome, but only after G was born, and while I was very happy to receive it, it did annoy me that the information hadn’t been given to us sooner.
I do not think that the information would have changed our opinion, but I do think it would have made us more comfortable in knowing he support that is available during what it a very difficult and distressing decision-making process.
The DSA notes that the Prenatally and Postnatally Diagnosed Conditions Awareness Act recently became law in the US and has created a petition for to be sent to the UK government for similar legislation to be introduced in the UK.
Needless to say I’ve added my name to the list. If you are a UK citizen and you support the petition’s aims, please do sign up.
The Washington Post has published an interesting story about the implications of new non-invasive testing techniques.
A clue as to why the story has been rehashed comes from the fact that funding for the Prenatally and Postnatally Diagnosed Conditions Awareness Act, which was approved in September.
“The new tests for Down syndrome come as advocates pressure Congress to fund a law passed last year aimed at ensuring that couples get accurate information about genetic conditions and at providing support for women who decide to keep their affected children or put them up for adoption.
“These tests make this all the more important,” said Madeleine Will of the National Down Syndrome Society, which is seeking $25 million over five years to implement the legislation. Society members are gathering in Washington this week to lobby on this and related issues. “
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.”