Ivan Lewis seems to nott understand @NeuroDiversity and 'our' needs in reading this letter below in responsse to DANDA!!!....
Ivan Lewis MP,
Parliamentary Under Secretary of State for Health,
House of Commons,
London
SW1A OAA
11th February 2008
Dear Mr Lewis
We refer to your letter dated 30th November 2007 sent to us on behalf of the Prime Minister’s Office. DANDA wishes to express our disappointment at the content of this letter as we feel it does not adequately address the concerns which we raised in our original letter to the Prime Minister’s Office; a copy of which is enclosed.
In particular we feel that your references to Valuing People are irrelevant to us as we are not, nor are the people we work on behalf of, learning disabled. As we make clear in our original letter, our conditions are known as either Specific Learning or Neuro-Developmental Differences (NDD). None or very few of the people who we cater for are impaired at the level of having a total IQ of 70 or less which is the benchmark that Valuing People uses to define learning disability.
We are not affected by an intrinsic learning disability; we have distinct cognitive profiles which many public service organisations either find too difficult or are unwilling to accommodate.
We would ask you to read again our original letter and give a more considered response to our concerns; particularly the lack of diagnostic facilities on the NHS for people with NDD profiles.
We await your speedy response.
Yours sincerely
Mary Colley
National Co-ordinator
Orginal letter to Ivan Lewis from DANDA below...
Dear Ivan Lewis MP
We are writing to draw your attention to a group of disabled people whose needs are not adequately catered for within current public service organisations e.g. NHS, Social Services and Police & Criminal Justice System, Employment Services or legislation.
Approximately 10% of the adult population have a significant degree of Neurological Developmental Difference (NDD) this term includes neuro- developmental conditions e.g. dyslexia, dyspraxia, AD(H)D and Aspergers Syndrome sometimes referred to as Specific Learning Differences. Investment in this 10% of the population with initial assessment is an economic necessity.
Diagnosis and assessment for this group of people in the United Kingdome is shamefully poor. Although there are improvements in some schools since the DDA 2004 assessment nationally for children is still patchy particularly for those with dyspraxia and conditions where there is a combination of learning differences. Teachers are poorly trained in recognising NDD profiles.
However for adults the situation is far, far worse as there is little on offer – unless you can afford private assessment. Many adults who struggle to understand why they cannot deal with those aspects of life they find difficult, (which others take for granted), can find themselves labelled as suffering from depression by GPs who haven’t sufficient.
awareness to spot the signs of NDD. This can be a self-fulfilling prophecy and lead to actual depression, which further masks the root cause.
How can someone have a chance of getting their rights upheld under the DDA, if their disability is so hidden that neither they nor their GP or other social services realise that they have it?
For those who have an idea that they may have one (or more often more than just one) of these conditions, there are few facilities for the GP to refer them to for assessment/diagnosis. That is if they can persuade their GP to take their symptoms seriously. It is virtually impossible for an adult to get an assessment for dyslexia or dyspraxia or other NDD conditions on the NHS. This information has been gained from our adult helpline of the Dyspraxia Foundation and DANDA’s helpline which has been going for over 11 years. Again, without an assessment the DDA holds little protection and without an assessment other facilities such as Access to Work are inaccessible.
At DANDA (Developmental Adult Neuro-Diversity Association) we know that people who are NDD are disproportionately represented in vulnerable groups -the Criminal Justice System (including the prisons), amongst suicides, the homeless and the unemployed.
There is a difficulty in reproducing hard statistical evidence for these assertions because the lack of awareness about the issues means that there has been little research that could have supplied this. Ironically the only hard statistics are to be found in UCAS on entry for the NDD’s who reach University and figures from the prison population. Data from the general population is impossible because of inadequate assessment. We believe it is vital for statistics from the most vulnerable groups to be available to enable society to have the opportunity of dealing prevention of social vulnerability
We also need greater awareness and initial screening capability in the Social services and employment services as well as the need for access to assessment on the NHS. Those in most need of this are generally the ones least able to pay for them.
We also need to dramatically improve the awareness of GPs, so that the necessary referrals can take place to prevent these people being trapped in the depression net.
Your support for the “Neuro-Diversity, Equality and Human Rights” paper recently produced by the Disability Rights Commission’s Autism and Neurodiversity Group would also be appreciated.
A copy of this document is available from the DANDA office email [log in to unmask] which was commissioned by the DRC for the attention of the CEHR. Our aim is to ensure the needs of this undervalued group of people in our society. When given the opportunity those with such profiles are often over represented amongst creative, strategic and innovative thinkers.
Yours
Colin Revell
_________________________________________________________________
http://clk.atdmt.com/UKM/go/msnnkmgl0010000002ukm/direct/01/
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