Mindroom given a voice on BBC Radio Scotland

BBC Scotland has made a half hour programme about Mindroom and life with Annie for their series "Give Me A Voice". 
It's a story of life, science, poor statistics, vision and determination. Listen to the programme on Monday 15th Feb at 11.30am on BBC Scotland (92-95FM) or access it online here.

This is what the BBC press release said about the Mindroom programme: 

"Did you know that there are at least five children in every class with some form of learning difficulty who will then grow into adults with learning difficulties? Today we 'Give Voice' to Sophie Dow whose own daughter Annie has learning difficulties. After finding no one able to answer her concerns she set up a charity called 'Mindroom'. Sophie is now working tirelessly to create such awareness and hopes by 2020 all children and adults with learning difficulties will receive the recognition and help they need to reach their true potential."

Our Summer 2009 Newsletter is available now!

 

 Download your copy here 

For Scotland's Disabled Children - fSDC

Mindroom has recently joined the fSDC Coalition.We are working collaboratively to achieve change.

The fSDC summer newsletter provides the details!

 

click here for fSDC website

click here to download fSDC summer newsletter 

Additional Support for Learning survey

The Education (Additional Support for Learning) (Scotland) Act 2004 was
introduced to improve the system of providing additional educational support
for those children and young people who require it.
The Scottish Government has recently reviewed the Act and has made many
changes. But they still need to tell local authorities and schools how to
make these changes happen. The 'for Scotland's Disabled Children' coalition
has designed this survey for parents and carers of children and young people
with additional support needs. We want to know about your experiences of the
Additional Support for Learning legislation and how it is working for you.
'for Scotland's Disabled Children' is a coalition campaigning for rights and
justice for disabled children and young people. The aim is to enable
families with a disabled child to have the same quality of life as other
families. One of the issues we campaign on is education.
The information gathered from this survey will go to the Scottish
Government, to tell Ministers what still needs to be changed to make the Act
work as effectively as possible and to allow children and young people to
access the support they need.

Click here to complete the survey

 Mindroom Parliamentary Launch 

Scottish Parliament 12th November 2008

Mindroom revealed key findings of Mindroom School Survey in Scottish Parliament on Wednesday 12th November.

The survey reveals that more than 17% -  one in six children -  may have a recognised learning difficulty. Mindroom also launched a policy agenda with proposed action.

The Mindroom Reception, hosted by MSP Jackie Baillie, was so well attended that a bigger room was needed.

Parliamentary Speech by Sophie Dow

Hello and very welcome to The Mindroom Parliamentary Reception.

My name is Sophie Dow and I am the Founder of Mindroom.

Before I get going, I would like to thank the formidable Jackie Baillie who is really our host today. We wouldn’t be here, in the Parliament, if it wasn’t for Jackie’s support. And we certainly wouldn’t be here in Committee Room 1 if it wasn’t for Jackie’s iron fist in velvet glove.

We were first allocated a smaller room and needed to change to a bigger one, as the interest for our Launch was big and we soon had a rather long waiting list. With a quick phone call and a death threat to some poor man in charge of the Meeting rooms here at the Parliament, Jackie made sure that you could all attend today. So THANK YOU Jackie.

Now, some of you might think that I am Swedish. And you are right. However, I do have children with serious Scottish accents.

And of course a very Scottish husband.

I set up Mindroom in 2001. And I did that after several years of research into the realm of learning difficulties. Our daughter Annie, who is now soon 18, is mentally handicapped and has severe learning difficulties as a consequence of that. Annie is of course the inspiration behind Mindroom.

I started to focus my attention on learning difficulties when Robin and I understood that Annie’s difficulties weren’t going to go away with some vitamin pills or a couple of OT sessions.

It  quickly became apparent (to me) that society was not really geared up to accommodating children and adults with learning difficulties and their families.

And I believe the biggest part of that failure is due to ignorance.

And it is a many facetted ignorance - or lack of awareness.

First of all, there is the fundamental issue of our understanding of the brain.

Something I will come back to in a little while.

Then there are the very narrow norm’s – based on what we think we know – that society has set up as operating criteria.

And then there is the very real and overwhelming bewilderment of the families who live with any form of deviation from what is perceived as normal.

So Mindroom was set up to remedy that –

by facilitating information and to create awareness about the very complex, but fascinating, issues of learning difficulties.

Mindroom's goal is to create such awareness, that by the year 2020, all children and adults in this country with learning difficulties, will receive the recognition and help they need.

That is our 2020 Vision

We will work towards our 2020 vision by:

• Offering direct help and support

• Arranging high profile conferences

• Setting up multi disciplinary diagnostic centers - Mindrooms

• Setting up specialist schools

• And campaigning for an integrated policy to support people with learning difficulites.

Since 2001, and in quick succession, we have:

Organised four major conferences:

• Mindroom Masterclass with Dr Sam Goldstein, Royal College of Physicians of Edinburgh, 2008

• The Social Brain2 - See The Bigger Picture, Glasgow Royal Concert Hall, 2006

• Mindroom Master Class, London College of Fashion, 2004

• See The Bigger Picture, EICC, Edinburgh 2003

We have also

Produced IT TAKES ALL KINDS OF MINDS  – a highly popular support pack for teaching professionals on meeting and accommodating learning difficulties in the classroom. Supported and sponsored by Royal Mail Education, the pack is currently on its 4th print-run, with 80,000 already distributed.

• Camp Kasper – we have facilitated summer camps for children with learning difficulties

• Royal Mail Social Inclusion Policy – Mindroom has collaborated with the Royal Mail on recruiting staff with learning difficulties.

In 2005 we set up our division - Direct Help and Support – a very important complement to our vision.

The ability to help here and now.

Mig Coupe who is head of Direct Help and Support, has over 30 years of experience within the field of learning difficulties. Her role is to respond to enquiries and to support families who need help wherever possible.

I mentioned earlier that we have very little knowledge and understanding of the brain – still – today in 2008.

Well, here’s how much -or how little - we know:

Sam Goldstein – Dr in neuropsychology at University of Utah

"We know 20% of the brain, but  understand only 10% of it."
 

Martin Ingvar – Professor of Integrative Medicine, Karolinska Institute, Stockholm

" We cant answer that question as we don't have the answer."

Christopher Gillberg, Professor of Child and Adolescent Psychiatry at Gothenburgh University and Visiting Professor at Strathclyde University in Glasgow.

 "We know LESS today than we did last year. (Due to the discovery last year of The Default Network by American scientists) "

To me it is very simple. If that is how little we know about the brain/mind, then nobody has the right to exclude anyone!

On the contrary, we must widen the norm to include and accommodate all kinds of minds!

The Prison Reform Trust reported in 2007 that up to 30% of the Scottish prison population have a significant ‘learning disability’. The financial cost of that is  between £50-75 million a year.

The emotional cost to each of them is incalculable.

Another shocking statistic is that 55% of those with a recognised learning difficulty are unemployed.

That is shameful.

It is also foolish,  as it is a lost opportunity in terms of revenue for the state.

There is a new, wonderful and very successful company – and concept - in Sweden.

It’s a commercial IT consultancy company called LeftisRight. They only employ IT consultants who have Asperger syndrome.

A person who has Asperger syndrome and is good at IT is fantastically knowledgeable and focused in his or her skills.

The aim of LeftisRight is to set up 20 offices across Sweden within 5 years employing 20 consultants at each subsidiary. That is 400 IT specialist with Asperger syndrome. The concept is hugely successful  and LeftisRight well on its way to reaching their target .

A now for the Mindroom School Survey.

With the support of Royal Mail Education, Mindroom sent out a questionnaire to  all schools in the UK. That is 30.000 schools.

25.000 primary schools and 5000 secondary schools.

The survey was addressed to the Head of Learning Support at each school and we asked:

How many children in your school have a Recognised Learning Difficulty?

The figure that came back was 17%.

Or - more than one in six children - have a recognised learning difficulty.

If we apply those 17% to the Scottish school population, that would be more than 120,000 pupils.

The official government figures show that a maximum of 30,000 pupils are given additional learning support in Scottish schools.

So put these figures, 120,000 vs 30,000 next to each other and you will see that there is a significant gap.

A lot of children with learning difficulties are going undiagnosed and therefore not getting the help and support they and their families need.

The issue of, what we for the moment call ‘learning difficulites’ - for want of a better term - is much bigger than previously thought. And it concerns all of us.

If we don’t act now, and if we don’t change our mindset from negative to positive, then this is going to be one of the big public health problems of our time.

Here is our Mindroom proposition:

We need to focus on three key areas:

• Assessment and diagnosis

• Research and development

• Education and training

So to go back to the first action point:

• Develop ground breaking, multi disciplinary centres. The centres will have a diagnostic clinic, do medical research and focus on education and training.

This is a global first and we intend to position Scotland as a global leader in addressing the issue of learning difficulties.

Perhaps one of the most important dimension of the concept is that it will enable children and adults with learning difficulties and their families to receive integrated advice and support through one single, expert point of contact.

• Secondly; research. Much more money is needed for research to understand:

• The scale of  the problem

• Causes

• Effects

• Suitable treatment and support

Mindroom tabled several Parliamentary Questions regarding research in preparation for today and the figures, or lack of them, that came back were shocking.

There are more facts and statistics about sheep here in Scotland than there are about children and adults with learning difficulites!

Only 0,6% of the total of £267 million research budget of the Scottish Chief Scientific Office was spent on learning difficulites over the past 5 years.

During that period, no money at all was spent on directly researching ADHD, Dyspraxia, Tourette syndrome, or Deficit in Attention, Motor Control and Perception (DAMP). Meanwhile, a meagre £41,000 was spent on direct research of Dyslexia, a condition which affects as many as one in ten people. Total direct expenditure by the UK Medical Research Council (MRC) on learning difficulties over that period was also well below 1% of the MRC’s total budget of £2.6 billion.

There are more statistics about sheep here  in Scotland than there are about children and adults with learning difficulties.

So  much much more money needs to be allocated to research into a better understanding of what is we are dealing with.

Thirdly - we need more training for teachers and medical professionals to ensure

• Early identification

• And to provide them with appropriate support and practical help

And (lastly):

• We need to make sure that all children with learning difficulties have a choice of school. Be that mainstream or specialist.

Inclusion should mean having a choice.

When Annie was in P1, the class was asked to stand up one after the other and describe themselves.

There was a selection of I am tall, I am fast, I am friendly…. And then Annie stood up and said: I am a star!

It is Robin's and my task to make sure that Annie keep seeing herself as a star.

But we can only do that in collaboration with society. We all have to work together to make sure that each and every one of all those children and adults with learning difficulties find their ‘island-s or competence’ - and are able make their dignified contribution to our society.

Thank you all for listening and I would now like to introduce you to a former schoolmate of Annie’s.

Now an amateur actor, musician and soon to be graduate - Sandy Howie.

Sandy is a former pupil of The New School – which is a small independent, weekly boarding school for children who are ‘educationally fragile’. The school was founded by Veronica Linklater and is situated in the hills behind Dunkeld in Perthshire.

And if it wasn’t for The New School, life would have been very different for Sandy and his family.

Over to you Sandy…..

Annie’s former Head Master at The New School, Mr Bill Colley.

Bill is one of the most knowledgeable people in the UK when it comes to learning difficulites. That knowledge and understanding is part innate and part aquired by working at the coal face as it were.

Over to you Bill.

Mindroom Policy Agenda

     


    Click here for Mindroom Policy Agenda

Media release

New figures expose huge gap in learning difficulties support

 Over 120,000 children in Scottish schools may be affected by a recognised learning  difficulty – more than one schoolchild in every six. That’s the key finding of a major new survey of learning support teachers published today (12th November).

Compared with official government figures showing at most 30,000 cases of additional learning support for children with learning difficulties in Scottish schools , the new figures suggest that significant numbers of children with learning difficulties are going unidentified and unsupported.

The survey results were presented today at the Scottish Parliament by Scottish charity Mindroom, alongside the launch of a major policy campaign by the charity, backed by international experts and celebrities. These include world-renowned Director of the Cambridge Autism Research Centre Simon Baron Cohen, Professor of Child and Adolescent Psychiatry and Strathclyde University Visiting Professor, Christopher Gillberg, and Edinburgh-based author of the worldwide best-seller “Number 1 Ladies’ Detective Agency” series of novels, Sandy McCall-Smith.

The Mindroom campaign has been further boosted by a Parliamentary motion endorsing the charity’s call to action, tabled by the convener of the Parliament’s influential cross party group on learning disability, Jackie Baillie MSP, who also hosted the campaign launch event.

The types of learning difficulty identified by teachers responding to the Mindroom survey include conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Asperger syndrome and autistic spectrum disorder, Dyslexia, Dyspraxia, and Tourette syndrome.

The new figures follow in the wake of a recent report by HM Inspectorate of Education, which criticised shortages in early intervention and specialist support for children with Dyslexia, one of the most common learning difficulties in schools.

A key pillar of the Mindroom campaign is to call on the Scottish government to support the creation of the world’s first Mindroom in Scotland. A global breakthrough in learning difficulties support, the Mindroom will bring together facilities for research, education, and diagnosis under one roof.

At the same time, Mindroom is calling for more public money to be invested in medical and statistical research into learning difficulties. Answers to parliamentary questions recently tabled in the Scottish Parliament  have revealed that, over the past 5 years, only 0.6% of the £267 million research budget of the Scottish Chief Scientific Office was spent directly on learning difficulties-related research. Over that period, no money at all was spent on directly researching ADHD, Dyspraxia, Tourette syndrome, or Deficit in Attention, Motor Control and Perception (DAMP). Meanwhile, a meagre £41,000 was spent on direct research into Dyslexia – a condition which statistically affects as many as one in ten people. Total direct expenditure by the UK Medical Research Council (MRC) on learning difficulties research over that period was also well below 1% of the MRC’s total budget of £2.6 billion.

The charity is further calling on the Scottish government to ensure teachers receive proper training to be able to help identify and support pupils with learning difficulties. In the case of autistic spectrum disorder, a report published yesterday by the University of Birmingham’s Autism Centre for Education and Research shows that many teachers and support staff in UK schools are unfamiliar with autistic children’s needs and struggle to teach them effectively.

Mindroom is also demanding concerted action to ensure that every child with a learning difficulty is matched to the type of schooling that best suits their individual needs – be that mainstream or specialist.

Mindroom’s founder Sophie Dow commented:

“This new survey suggests that official government figures on learning difficulties have been masking a much larger problem than we’d previously thought. Properly diagnosed and supported, people with learning difficulties can make a tremendously positive contribution to society. But too many today are condemned to long term unemployment or – worse still – committing crime, because they don’t get the help and understanding they so desperately need. Without concerted action, these shocking new figures suggest that we risk sleepwalking into the biggest public health care crisis of our time.”

Internationally acclaimed author, Sandy McCall-Smith, a Mindroom supporter, added:

"I am very happy to support this fine charity. Mindroom's efforts bring practical and much needed help to the families of people with learning difficulties. This is a thoroughly good cause."

Professor Simon Baron Cohen, one of the world’s leading experts on autistic spectrum conditions, said:

"I am pleased that Mindroom is not only highlighting that there may be more than half a million people in the UK affected by autism but also that many pupils with autistic spectrum conditions (ASC) may go undetected. The Mindroom campaign offers a welcome opportunity for Scotland to promote early intervention and integrated support for ASC and learning difficulties."

Sophie Dow concluded:

“I have already written to Scottish ministers, requesting an urgent meeting to discuss the survey findings and the specific actions we want the Scottish government to take to address this issue.”

Case Study available on request.