Disability Rights Commission (DRC) Neurodiversity and Autism Action Group (NAAG) Majority Report "The Majority is the Truth Plus One" in full (including Unanimously Agreed Disabled People's Charter of Essential Needs to be Fully Met and Appended Unanimously Agreed Report Neurodiversity, Equality and Human Rights by Jo Todd

https://drcnaagimplementationandlegacy.blogspot.com/2024/07/disability-rights-commission-drc_30.html

Neurodiversity, Equality and Human Rights Report: The Majority is the Truth Plus One

A Neurodiverse Contribution to the Overall Equality and Human Rights Agenda as well as the Rights of Neurodiverse People

This first section, to which Jo Todd’s Report is added, is edited by Adrian Whyatt, Member, Disability Rights Commission Neurodiversity & Autism Action Group in his official capacity as a Member of that Group

Statement on why this Report is Necessary

This has been made necessary by the time constraints (the DRC ceases to exist at the end of September, its functions being taken over by the Commission on Equality & Human Rights, on 01 October 2007) and the fact that despite repeated warnings, essential information and acknowledgements have not otherwise been included, as well as the essential contributions of Greater London Action on Disability (GLAD) and others, despite repeated warnings (see appendixes). The recommendations in it, including definitions, are to be followed, as far as is practicable, in the few instances where there might be deemed to be a clash with the Final Report of Jo Todd (cut and pasted from a .pdf file with apologies for any errors in transposition). This .pdf file is available from Jo Todd, another member of the Neurodiversity & Autism Action Group. Emails: jotodd@key4learning.com; office@key4learning.com; key4learning@hotmail.com.

The much later than expected arrival and incompleteness of the Draft Report of Jo Todd, especially in human rights terms, despite the fact that it contains much of value, means that it is necessary to produce this report in a far from completed format.

It is my intention, if at all possible, to send the last version of this report before the end of the DRC, after the scheduled meeting of the Action Committee set up to carry forward the discussions at the Politics of Autism meeting held at the Greater London Authority (GLA) on September 12, 2007. This, itself, largely comes about as a result of Autscape, an organisation run entirely by people identified as being on the autistic spectrum.

As a “Living Document” however, it will live on and should continuously and periodically evolve into a better document and basis for REAL ACTION.

Some of the recommendations might seem fanciful, and “impossible”. But lots of things, that have come to pass, such as railway privatisation, have been deemed by many or most people to have been impossible at the time.

STATEMENT ON OVERALL OBJECTIVE OF COMMISSION ON EQUALITY & HUMAN RIGHTS (CEHR) AND HUMAN RIGHTS POLICY IN GENERAL

The overall objective can be summed up in one word:

Anti-eugenics.

Saying no to anti-eugenics is the “big ask”. It is also directly relevant to this group now that there are evergrowing antenatal tests (e.g. for elevated testosterone levels which, especially in boys, are implicated in some fashionable “scientific” theories of what makes someone more likely to be “autistic”). There are also some claims that some genes have been identified making dyslexia more likely. Again, many people believe, on questionable evidence, that this is more common in boys than girls. Making it also a gender issue.

Likewise gluten and milk processing differences (including intolerance) (linked to the incidence of neurodiversity including autism, hence the Sunderland Tests by Professor Paul Shattock).

STATEMENT ON THE PARIS PRINCIPLES

This is generally most effectively achieved by Human Rights organisations when the United Nations (UN) Paris Principles 1991 are applied. Amongst the most important requirements arising from these are:

Independence of Government;

Representativeness;

Comprehensiveness;

Inclusivity

Accessibility and

Sufficient Resources.

We agree with the vast majority of responses from marginalised groups across all strands of equality and diversity in the consultation leading up to the formation of the CEHR that this should be the basis on which the CEHR runs.

The Government has rejected this view, but we stick with it.

This is a LIVING DOCUMENT which will be built on. The Neurological Alliance has set up and operates a Long-Term Conditions National Service Framework (NSF) Implementation Group.

It is intended, even if it is not possible this time, that future editions will include more appendices, on disability history and also on the workings, amongst other things of the DRC Neurodiversity & Autism Action Group predecessor, the arguably much more representative, DRC Neurodiversity Group.

This document states that, likewise, but much more extensively a NEURODIVERSITY ACTION, DEVELOPMENT AND IMPLEMENTATION GROUP is to be set up. This is to monitor and help ensure, independently, that action is to be taken. This will itself help to monitor any and all legal successors to the DRC & the Neurodiversity & Autism Action Group.

The very short time span available for this document necessarily means it will not be that polished by the time the DRC comes to an end on September 30^th 2007. Nevertheless it is the first document of its type in the world to be produced by anyone on an official human rights body. Its applicability is international and is intended to be extended from the DRC’s limited remit (predominantly Great Britain) throughout the UK and Internationally. The DRC has had a limited international role.

Disabled Peoples' Charter for Essential Needs to be Fully Met

 

1.  Full accessible environment.

2.  Full accessible transport system.

3.  Technical aids, equipment and assistive technology.

4.  Accessible housing, including funding for adaptation. 

5.  Personal assistants.

6.  Inclusive education and training.

7.  Adequate income.

8.  Equal opportunities and guaranteed employment.

9.  Appropriate accessible information.

10. Advocacy

a. Independent Advocacy.

b. Self-advocacy

c. Peer Advocacy

d. Citizen advocacy

e. Legal advocacy

 

11. Counselling.

12. Appropriate and accessible health and social care provision [. Add]: Including diagnosis, treatment and support, which includes appropriate Mental Health services and treatment taking into account the nature of individuals disabilities including their diagnoses and how they are affected.

13. Coaching

14. Individual style of social interaction accepted and supported.

15. Fully accessible legal systems, this includes judicial civil and criminal systems. This includes mediation and arbitration systems, comment, liaison and complaint systems, tribunals and all other forums]

16. Fully accessible police and law enforcement system.

17. Effective and Fully Funded Access to all stages of the legal system from informal dispute resolution onwards. As part of this a Disability Courts structure.

18. Extension of and effective enforcement of the Disability Equality Duty (DED) throughout the legal system, as part of its extension through all sectors of society: public, private, voluntary and mixed. Including all legal and law enforcement processes. This includes private security guards. And compulsory and comprehensive training in the DED for all.

19. The Right to have religious, spiritual, other belief and cultural needs met in full.

20. Court decisions to be made fully compliant with the Disability Discrimination Act (DDA). All participants in the legal system, including judges, to be held fully and personally liable under the DDA and other legislation for any breaches of disabled people’s rights. To support this they are to have unlimited scope to order disabled people’s needs to be met.

21. The right to an Individually Controlled Environment (ICE). This includes measures to ensure that a person can avoid sensory overload.

 

This Charter is based upon the Southampton Centre for Independent Living’s 12 Needs of Independent Living, with additions by the Mental Health Action Group, based in Hull and the East Riding of Yorkshire, in 2007.

Notes on MHAG and its concerns

1. The Disability Rights Commission (DRC) established a DRC Neurodiversity Group followed by the DRC Neurodiversity & Autism Action Group following effective lobbying at the DRC AGM in 2003 by Mr Colin Revell, MHAG volunteer, and NAS Councillor, Mr Russell Stronach, as well as concerted and continuous pressure from many others, notably his fellow NAS Councillors Adrian Whyatt (mainly in his capacity as Co-Chair of DANDA: Developmental Adult Neuro-Diversity Association, but also through his involvement in other organisations) and Larry Arnold (who is also an NAS Board member). This is to be included in part of its final report of September 2007 before the DRC is replaced by the CEHR.

2. They have also expressed their concern that there needs to be more emphasis on the Mental Health needs of neurodiverse people. They point out that, for example, the minimum standard set by the Royal College of Psychiatry on it. Also, in the light of the Piers Boldruc case and many others, more support against misdiagnosis (e.g. schizophrenia for Asperger’s Syndrome and depression for (especially developmental) dyspraxia.

3. In addition, it should be noted that MHAG was established before the DRC set up its Mental Health Action Group. It lobbied the DRC to set up a Mental Health Action Group and one of its members has served on that group.

4. MHAG prefers the term “Inclusive Living” to “Independent Living”. This is also in line with best practice. MHAG prefers “Centres of Inclusive Living” to Centres for Independent Living, just as it prefers Organisations of Disabled People to Organisations for Disabled People.

5. Adrian Whyatt asserts copyright to the term “World Centre of Inclusive Living” (WCIL). WCIL requires all stakeholders to be included and to sign off on policies, including access needs. It also requires that representation of disabled people needs to be reasonably proportionate according to disability type etc. Adrian Whyatt immediately gives copyleft to MHAG to set up WCIL in its offices in Hull. Likewise for United Kingdom Centre of Inclusive Living (UKCIL), etc.

6. MHAG wants to ensure that the incorrect popular stereotypes about disability being mainly visible and obvious (apparent impairmentism) is corrected.

7. MHAG and WCIL are determined that Inclusive Living remains under the control of truly representative groups of disabled people and is not hijacked and distorted by other groups, especially as disabled people as a whole are the most excluded group in society.

REASONS FOR INSERTING THIS DOCUMENT & APPENDING JO TODD’S REPORT

1. Though there is much that is good about Jo Todd’s Report, there needs to be a greater emphasis on the politics of best practice in implementing fundamental international human rights principles and a greater understanding of the wider disability (and especially disabled people’s) movements. For example, the phrase sheltered accommodation must be removed to bring the document into line with the Right to Inclusive Living (a more accurate and empowering concept than Independent Living).

 

2. Crucially, there is no explicit mention of one thing that has become clear: Given the general failure of the wider disability movement to respond to or take seriously the needs of neurodiverse people, as well as broader society, it is essential to demand a change in the structures of the pan-disability organisations themselves: there must be proportional representation according to how common broad groups of disabilities are as well as key stakeholders who have the power of veto over access needs and general demands that do not include them. This is at all levels, up to and including the most senior levels. Every single national major national pan-disability organisation in the country without exception that I can think of (NCIL, UKCODP, RADAR) is Chaired by a neurotypical wheelchair user, even though they represent a tiny proportion of disabled people. Likewise the DRC (Bert Massie) and the new Commission for Equality and Human Rights (CEHR) Disability Commissioner and Chair of the CEHR Disability Committee. Other groups are represented, BME, Learning Disability, Mental Health, Gay Community, etc., but the Neurodiverse Disabled People's Movement activists are not represented. Nor in their agenda. Proportional representation and recognition of neurodiverse people as a key stakeholder group with the power of veto over general standards (through the inclusive living (a more accurate and empowering concept than “independent living”) agenda) must therefore be first priority in terms of POLITICAL DEMANDS and must build on the Disability Equality Duty (DED).

 

3. Few regional or local pan-disability organisations are any better.

 

4. Therefore, this document sends the following message:

 

4.1.1. NCIL, UKCODP, RADAR, DRC, CEHR, etc:

 

4.1.1.1. You are NOT fully representative of Disabled People until your Governing bodies represent them proportionally. And this is reflected in your voting procedures and policies on the lines stated above. Until you do, you are as unrepresentative of disabled people as the House of Commons was before the Great Reform Act of 1832. You are instead, just an organisation of a collection of "rotten boroughs". With gross overrepresentation of the aristocracy of the "Disability Movement", neurotypical wheelchair users, and a corresponding gross underrepresentation of the potential lumpenproletariat, or underclass, neurodiverse people. The same applies to the CEHR which has followed the DRC's bad example by failing to appoint anyone from the potential lumpenproletariat, appointing only from the wheelchair aristocracy and their allies to CEHR Commissioner positions. The potential lumpenproletariat have not even been appointed to the Disability Committee positions. Until this is addressed, your legitimacy is highly questionable, to say the least.

 

4.1.1.2. Your key demands must include all key neurodiversity demands (some of which are included in Jo Todd's draft report for the DRC Neurodiversity & Autism Action Group).

 

4.1.1.3. Until you are prepared to support our demands, and ensure proportional representation, many if not most neurodiverse people will not automatically view it as being in our best interests to support yours. Quite the opposite, they will add to the taxes we all have to pay (including Value Added Tax (VAT), which noone can entirely avoid). Nor will they or their organisations tend to identify with the "Disability Movement" or the "Disabled People's Movement". This makes it much less likely that your demands will be met anytime soon by society as a whole, as politics is ultimately a numbers game.

 

4.1.1.4. The Individually Controlled Environment (ICE) as proposed by myself and passed unanimously with all major types of disability represented at RADAR's New Spirit Coalition in December 2005 is the way forward. (This must come right after items 1-3 in the final document, and everything must flow from it).

 

5. In addition in the final report

 

5.1. The contributions of pan-disability organisations, especially those not funded by the Government shekel or the long arm of the Government shekel, charitable funding and service contracts, must be explicitly acknowledged. There is no acknowledgment of this in the draft report, although there were extensive contributions.

 

5.2. International best practice over inclusion (e.g. Finnish education), must be acknowledged.

 

5.3. Capacity building needs must be acknowledged.

 

5.4. An invest to save approach must be used. Not getting neurodiverse needs met has helped to result in the highest incarceration rate in Europe and the lowest educational attainment of any developed Organisation for Economic Cooperation and Development (OECD) country.

 

5.5. The efforts of the rare neurodiverse people, such as neurodiverse wheelchair user, David Morris, who have a track record in the disabled people's movement, and in terms of implementing policy, must be explicitly acknowledged. It has been said from a normally reliable but confidential source that he withdrew from the DRC Neurodiversity Conference in March 2007 because of the marginalisation of the disabled people’s community activist voices.

 

6. Personal and group contributions must be acknowledged. E.g. of Colin Revell and Russell Stronach, without whom the predecessor DRC Neurodiversity Group would not have happened.

 

7. The promise of the All-Party Parliamentary Group on Disability (APPGD) and RADAR, which supplies its secretariat, to take forward all of the DRC Action Groups must be explicitly acknowledged.

8. This report was not done to time and promised contributions (even when asked to be dictated over the phone) were not included. Including mine.

FOREWORD: DEFINITIONS OF NEURODIVERSITY

See also appendixes and extracts from the appended Report by Jo Todd of which a full version is available as a .pdf file. Her definitions are somewhat more restrictive.

The definitions that follow were submitted, and accepted, without dissent, in response to a request to each and every member of the DRC’s Neurodiversity & Autism Action Group by Adrian Whyatt, and followed consultation with informed neurodiverse disability activists and some of their organisations.

1. Superfast definition
             

Neurodiversity=jagged profile.  Neurotypical=even profile.

2. Brief definition

Neurodiverse people have a jagged ability &/or       processing (including neurological) profile, at least in part. Neurotypicals do not.

3. Labels neurodiverse people commonly have

Many have been unlabelled and have difficulty getting "diagnoses" at all to get past gatekeepers for the minimal services there are, if they are lucky enough to be offered them.

As well as the labels included in the appended original document, mental health labels must be included. This means that neurodiversity, at least mildly, affects well over 40% of the population, and rising, towards a majority, of the population. Most do not even realise that it exists, let alone that they are affected by it.

A key contribution to the wider Disability Agenda

ICE: THE INDIVIDUALLY CONTROLLED ENVIRONMENT.

We must start with our contribution to wider inclusion issues. A general report then follows. Whistleblowing protection is claimed for some of the issues raised in this section of this document, and indeed for the whole report, as there have been verbal attempts to claim copyright protection over parts of this document, as well as attempts to silence some of what has been said.

This comes out of the Neurodiverse part of the disabled people’s movement. And was unanimously agreed across all types of disability difference. The individually controlled environment works for every type of difference, including every type of disability and sets a real standard for truly “Universal Design” and Inclusion. This goes broader than just disability and covers every area of social inclusion (including race and culture).

MINI-BRIEFING FOR RADAR New Spirit Coalition : ICE (INDIVIDUALLY CONTROLLED ENVIRONMENTS), a new paradigm for disability inclusion and Access covering all types of disability. Developed out of…

SOME OF THE POTENTIAL SOLUTIONS THROWN UP BY THE QUIETER HOMES FOR LONDON – EXPLORING PRACTICAL SOLUTIONS TO A FORGOTTEN PROBLEM CONFERENCE OF 03 NOVEMBER 2005 Organised by the Greater London Authority in conjunction with the UK Noise Association

Background

The UK has lower noise insulation standards even than Poland and the Mediterranean EU countries. The highest in Europe are in Austria. As a result of growing complaints, there are a rash of rather heavy handed and ineffective measures, such as ASBOs, being used.

Some disabled people have even attempted suicide as a result of a failure to meet their sensory access needs, especially over noise. Heat, light, colour, smell and texture also form access issues. Not to mention, allergies. The fashion for noisy wood floors makes it worse. A wide range of disabled people are especially affected by these issues (those with neurological conditions and mental health issues especially, but by no means exclusively).

This conference looked at “ways of incorporating internal noise insulation in the Decent Homes Standard; housing allocation policies, tenancy agreements and management practice; grant aid, equity release and other means of securing more resources to improve noise insulation; improving information on noise insulation, including Quiet Homes labelling; and joining up policy on noise insulation with energy efficiency. It built on the Quiet Homes for London report: http://www.london.gov.uk/mayor/strategies/noise/docs/Quiethomesforlondon.pdf

Direct impact on incidence of disability

One of the speakers, Professor Stephen Stansfield, a psychiatrist, reported on specific studies around airport relocation in Munich, Germany, which showed a higher incidence of neurodiversity especially in children closer to airport noise problems. There was less when the airport was moved and more in the area it was moved to.

Problems for older people and those with an existing illness were also alluded to.

Equality issues

More socially deprived groups, including disabled people, tend to live in the higher density areas which are much more affected. The London Road Traffic Noise Map, www.noisemapping.com , cross referenced with other data, shows the disproportionate impact of this.

POTENTIAL SOLUTIONS

1. Super high density buildings

Examples of these, with a central core and a three leafed clover shape, from Macao, China, were given. Without implementing something similar in some of Britain’s urban areas especially, there would seem to be practically no possibility of meeting the housing needs of disabled people and many others.

Thick concrete is used, providing the necessary insulation and the only boundary walls between the flats directly are in the bathroom areas.

2. Practical acoustic insulation in the home

A range of acoustic insulation products were presented. I will bring a sample to the meeting.

3. Traditional housing types with noisier areas away from the neighbours with a quieter core was presented.

This included hallways on adjoining properties.

4. The Silent Pod.

Modular rooms within a room were presented. These also have an advantage if someone want to make a lot of noise. This technology has been successfully developed, especially in Japan, in the “Bubble Hotel” concept.

5. Higher standards at local authority level.

Local authorities do have the power to impose higher standards. Some have done so. Especially in Scotland where some high standard “model buildings” have recently been built. This can be built on.

6. Ownership systems and redevelopment rights need to form a part of this agenda.

In other countries (e.g. Greece, Israel, parts of France (such as Corsica) and Italy), the right to redevelop your home (or a suitable alternative plot) so that you have flats located one above the other (or sometimes opposite) is firmly established, provided a much greater degree of family support.

7. ICE standards need to be incorporated into any access needs requirements.

These must be individually controlled.

ACTION POINTS:

1. Incorporation of this agenda into RADAR housing policy.

2. Incorporation of this into the Independent Living Agenda, including independent living bill.

3. Social enterprise pilot projects are to be encouraged.

4. In terms of campaigning we need to consider whether we want to set up Community Interest Companies (CIC)s and/or Co-operatives which will have far fewer political restrictions than RADAR’s current NSC Coalition. This would also help us to move further away from the traditional charity modus operandi (way of working) and much more towards a rights based social enterprise modus operandi.

Presented by Adrian Whyatt, Co-Chair, DANDA: Developmental Adult Neuro-Diversity Association, December 12^th 2005 to the RADAR New Spirit Coalition (NSC).

The World’s First Organised Pan-Neurodiversity Organisation: The Coventry Neurodiversity Association

This is not to be confused with DANDA (see appendixes), which only covers “developmental” neurodiversity. It also covers all other forms of neurodiversity (including acquired). For definitions see the appendices on GLAD.

NOTHING ABOUT US WITHOUT US AND ITS IMPLICATIONS

Misrepresentation by non-disabled people led organisations

A key recommendation is that it be made a very serious criminal offence for organisations not controlled by disabled people to claim to speak on their behalf. Or for them to be reported as such by the press or other people.

Existing laws on misrepresentation and the Trades Description Act must be strengthened and extended. This applies to many of the big disability charities. Examples include Mencap and the National Autistic Society (NAS) (originally and more honestly named as the National Society for the Parents of Autistic Children).

This is a fraud on the public as they tend to think that these charities are acting “in the best interests” of disabled people. When they are actually often imprisoning them in “care homes”, etc. These might meet a desire by relatives to get rid of them, but they are the antithesis of independent living.

The noisy open plan offices of the National Autistic Society, for example, and their bright white colours, especially on the upper floors, are inaccessible because of these characteristics to many, if not most service users.

Disabled people’s organisations with employees typically (according to a study published around the turn of the millennium) employ about 70-75% disabled people. The far larger non-disabled people led organisations, typically employ only 5-15% of their workforce as disabled people. With the average closer to 5%. This compares most unfavourably with the percentage of the population that has a declared disability, even under the most conservative figures.

They could, if they wanted to, legally employ 100% disabled people (as some disabled people’s organisations do). This would create at least 100,000 jobs. Able-bodied people have few problems finding work in a dynamic economy like the UK, especially if they are prepared to do anything.

Key Recommendation

Legally enforceable transformation of all disability organisations (including service providers) into 100% disabled people run, controlled and employed organisations within 10 years.

Key Recommendation

NEURODIVERSITY TEAMS

This was suggested by Paul Wady, an active member of the neurodiverse (including autistic) community:

Every public body and major organisation (whether public or private) must have a trained team dedicated to neurodiverse people, with full and comprehensive neurodiversity equality training delivered by qualified neurodiverse people with a full understanding of the social model of disability, disability politics and history and wider human rights issues.

They must be cross-trained in all types of neurodiversity.

EMBEDDING NEURODIVERSITY IN ALL TRAINING PROGRAMMES AND EDUCATION.

On the lines above.

OTHER RECOMMENDATIONS

See rest of document (including attached Jo Todd document and appendices).

Neurodiversity, Equality and Human Rights

(Original Report by Jo Todd). All References are to the page numbers in her .pdf. This also contains original diagrams which would not cut and paste.

Table of Contents

BACKGROUND

3

The DRC Autism and Neurodiversity Group

3

INTRODUCTION

3

WHO ARE THE NEURODIVERSE?

5

Cognitive processing differences 5

Root cause 5

Effects of Neurodiversity 7

Strengths and Talents 10

Terminology 11

How many people are Neurodiverse? 12

Screening and Assessment 13

SOCIAL FRAMEWORKS 15

Maslow’s hierarchy 15

Every Child Matters 15

Neurodiversity 15

HIERARCHY OF NEEDS 17

Physiological Influences 17

Safety and Contentment 18

Acceptance and Opportunity 19

Valued and Respected 20

Well–Being and Fulfilment 20

THE DRC PRIORITIES RELATED TO THE NEURODIVERSE 21

9 Priorities for a New Agenda 21

1. Promoting a culture of equality and human rights. 21

2. Bringing an end to child poverty 22

3. Increasing life chances through learning and skills 22

4. Ending poverty and widening employment opportunity 23

5. Increasing democratic participation and active citizenship 24

6. Developing a social care system fit for the future 24

7. Tackling health inequalities 25

8. Meeting the future housing challenge 25

9. Building stronger, safer communities 26

APPENDIX 1 DRC MANIFESTO ON BEHALF OF PEOPLE IN THE

NEURODIVERSE COMMUNITY

27

APPENDIX 2: RELEASING EXCELLENCE -AILEEN QUINTON

29

APPENDIX 3 DANDA

54

APPENDIX 4 NOTES ON SENSORY SENSITIVITY

APPENDIX 5 (inserted by Adrian Whyatt) GREATER LONDON ACTION ON DISABILITY SUBMISSIONS

APPENDIX 6 KEY QUOTES AND PRINCIPLES INFORMING AMENDMENTS TO THIS DOCUMENT (INSERTED BY Adrian Whyatt)

APPENDIX 7 DRC NEURODIVERSITY GROUP MANIFESTO OF NEURODIVERSE PEOPLE (Drafted by Adrian Whyatt and accepted unanimously and unamended by that group in 2005)

APPENDIX 8 The UPIAS Bias Update – or some thoughts on how the origins of the disabled people’s movement in organisations such as the Union of the Physically Impaired Against Segregation (UPIAS) have continued to distort public policy about disabled people and to exclude and/or marginalise other groups of disabled people in the disabled people’s movement itself, especially “new groups” such as neurodiverse people fighting for recognition (INSERTED BY Adrian Whyatt)

APPENDIX 5

Re: GLAD Neurodiversity & Autism Action Group (NAG) summary of minimum set of demands as revised to take in comments and developments was Neurodiversity/Autism Conference on 26 March

27 August 2007

Dear all

This is a summary document as revised, including a minimum set of demands as requested by Bob Niven at the NAG meeting of 17 August 2007.

These must be incorporated in any outcomes of the joint meeting of NAG & the DRC's Learning Disability & Mental Health Action groups this Friday and all other meetings carrying over into the new CEHR.

If this is not done then dissenting reports will be issued, as quickly as practicable.

It should be added that RADAR is pledged to help take forward this agenda, nationally, regionally and internationally through its networks.

Yours sincerely

Adrian Whyatt, Chair.

GREATER LONDON ACTION ON DISABILITY

5, Park House, 13 Girdlers Road, Brook Green, nr Kensington Olympia,

West Kensington, Hammersmith, London W14 0PS. Tel: 020-7-603-9710. Email: glad2007@gmail.com. 

Working on behalf of disabled Londoners since 1952 

Minimum set of main demands of neurodiverse and autistic people 

1. Definition of ability (including differ-, (including alterna- and dis-)ability and disabled people

 

GLAD follows primarily the difference based social (social ecological) model of ability (including) disability. Thus we define ourselves as disabled people because we are "disabled by society and the environment because of our differences including biological differences...and more generally by failing to meet our needs". GLAD very much supports the use of definitions of disability such as one of those used by the Liberal Democrat Disability Association (LDDA): "difference, including an element of impairment".

    2. Definition of neurodiverse people       

    2.1. Superfast definition
             

Neurodiversity=jagged or uneven profile.  Neurotypical=even profile.

    2.2.  Brief  definition

           Neurodiverse people have a jagged ability &/or       processing (including neurological) profile, at least in part. Neurotypicals do not.

2.3. Labels neurodiverse people commonly have

Many have been unlabelled and have difficulty getting "diagnoses" at all to get past gatekeepers for the minimal services there are, if they are lucky enough to be offered them.

As well as the labels included in the appended original document, mental health labels must be included. This means that neurodiversity, at least mildly, affects well over 40% of the population, and rising, towards a majority, of the population. Most do not even realise that it exists, let alone that they are affected by it.

Some tend to be more obviously impacted than others, especially, though not as an absolute rule, at the extremes people with severe autism and/or those who have had severe strokes, brain injury or who otherwise have great mental health needs.

There is a pressing need to break down these administrative/diagnostic/medical definitions so that needs are actually much better met.

We thus reject the concept of an ever-broadening "autistic" or "neurodiversity" "spectrum". We embrace instead the concept of a "neurodiversity continuum". The "autistic spectrum" is a small subset of this and the use of this term should be superseded by "neurodiversity continuum".

Neurodiverse people tend to have the same access needs and similar support needs.

In terms of needs, people with the "autism" label tend to lead the way, accompanied by those with "severe" attached to other labels. They tend to have the highest levels of sensory overload, etc. Therefore it is vitally important to make the environment accessible to even the "lowest-functioning" "autistic" person. By doing so you will help to make it accessible to all neurodiverse people. A number have their own particular needs, such as being Makaton users.

3. We intend to concentrate on common unmet needs that are not fully appreciated.

       3.1.Organisational software,
       3.2. Personal assistance. 

       3.3. Avoiding mislabelling with everything from depression to  schizophrenia, the most important unappreciated needs tend to be: 

1. Access to non-open plan environments. This situation is getting worse and worse with the open plan and standardisation manias. What is needed, instead, is a flexible environment, an Individually Controlled Environment (ICE), in which, like in a "good old fashioned office" (apart from wheelchair access and hearing loops, etc), everyone is able to control their own individual temperature, light, textures, colour scheme, air flow, sound environment, and smell environment, and to be able to screen off their own area (or open it up if need be). This is eminently achievable using existing technologies (including, in extreme cases, creating rooms within a room). The same thing applies to modes of transport and housing and can lead to the retention, with slight modifications, of some old train carriages so that people can sit in their own quiet compartment (with CCTV backup), and converting some of the existing "Quiet carriages" into "silent carriages". The highest standards on noise insulation in Europe are currently to be found in Austria.
   This also includes the colour scheme of all documentation.

 

2. Access to gluten-free and milk-free products (both medicines and foods).

3. Total transcripting of meetings, etc (no "summarising out" of things considered "unimportant"). Linked to this is comprehensive communication, including an end to assumptions about "body language" and a "Royal Response" (attention to every detail, however "minor").

4. Tackling terrorism, other crimes, and exclusion comprehensively. The "Moron Bomb Plot Leader" headlines in the Sun following the convictions of people for the 22/7 bomb plot illustrate the urgency of this as does ever-increasing gang violence. This is backed by the DRC's own research which shows the ethnic groups most affected by disability are the predominantly Moslem Pakistani and Bangladeshi communities. This means reinforcing the relevant "Equality Duties" on grounds of national security, etc.

5. Comprehensive and immediate action (with no budget cap because of the urgency and the savings) is essential. This should be called Access to Equity (AtE) and modelled on Access to Work (AtW), with some changes (capacity building), user-control, getting rid of "contribution requirements" altogether for funding of less than £20,000, etc. This includes the creation of new and effective organisations, and the transformation of existing ones.

6. Embracing & using as standard Aileen Quinton's "Releasing Excellence" model of human resources.

7. All of these things are necessary and represent non-negotiable minimums.

    Yours sincerely

    Adrian Whyatt, Chair, on behalf of GLAD.

Appendix: Some background documents and correspondence. Does not include ICE (Individually Controlled Environments) and Revealing Excellence documents which have been separately posted and sent to NAG and its predecessor the DRC Neurodiversity Group (as well as RADAR's New Spirit Coalition (NSC) which unanimously approved ICE as a concept covering all of disability in 2005.

GLAD Message of Support for DRC Conference on Neurodiversity of 26 March 2007

On 3/22/07, Adrian Whyatt <adrianwhyatt@gmail.com> wrote:

Dear all

 

As Chair of GLAD I have been authorised to issue this supportive message on behalf of GLAD. This is repeated in the body text of this email for anybody who might have difficulty opening attachments. No final statement of needs can be endorsed by us unless there is no "editing out" of essential neurodiverse (and autistic) unmet needs such as a reform of the Human Resources system, disability definition reform and the ICE (Individually Controlled Environment) alternative to open plan mania, including cellular offices for those who need them, and separate compartments on trains, is endorsed. Likewise full inclusion of those who may not sign up, 100% to CEHR and New Labour credo on equality and diversity. This requirement to signing up to their entire equality and diversity credo for CEHR and ODI posts, smacks of the last throes of the pagan Roman Empire (circa 303 AD) in which those who professed Christianity could not progress beyond the rank of a local town supervisor of the imperial brothels if they spoke their beliefs openly(see especially the Life of Saint Hesychios (previously demoted to just such a post and then martyred on direct orders of the Roman Emperor for refusing to recant (through drowning with millstones around his neck) on March 2, 303 AD). Constantine the Great (see statue outside York Minster) was crowned in York 3 years later).

 

Yours

 

Adrian Whyatt, Chair, Greater London Action on Disability (GLAD)

 

GREATER LONDON ACTION ON DISABILITY

5, Park House, 13 Girdlers Road, Brook Green, nr Kensington Olympia,

West Kensington, Hammersmith, London W14 0PS. Tel: 020-7-603-9710. Email: glad2007@gmail.com .

 

Working on behalf of disabled Londoners since 1952

 

Minimum set of main demands of neurodiverse and autistic people

 

1.   Definition of disabled people

 

GLAD follows primarily the difference based social model of disability. Thus we define ourselves as disabled people because   we are "disabled by society because of our biological differences (apart from those solely related to age, gender, race and ethnic origin), including both talents and areas of naturally superior functioning which society refuses to recognise and discriminates against us for (differabilities or alternabilities) and impairments."

 

This is to try to eliminate material and spiritual poverty and push society towards a focus on talents – what people can do and what they are good at, and not just a negative focus purely on impairments, which has tended to be confused with complete inability.

 

Other models of disability are tested against this and are accepted only to the extent that they are compatible with it. This includes the Medical, Charity, Administrative and various Religious and other models of disability.

 

We very much recognise the diversity of disabled people and thus condemn the Commission on Equality and Human Rights (CEHR), and the Office for Disability Issues and other Government and official bodies recent insistence that everyone who wants to work for them, directly or indirectly, publicly signs up to their entire credo (or belief system) even if it contradicts their fundamental and freely and peacefully expressed religious or other beliefs. This includes people for whom this "obsession" forms part of their belief system, and of their

"diagnosis", and thus of their difference, such as someone with asperger's especially. It is thus disablist, hypocritical and wrong.

 

2.   Definition of neurodiverse people

 

It should be noted that neurodiversity is at least 25 times as common as autism (at 25+% of the population) and   so it is high time to stop trying to see it as an extension of autism (which remains mired in the can't talk/interact/Rainman/screaming uncontrollable children in the public imagination).

 

We tend to favour the use of "alterna-", where possible, rather than the purely negative "dys-". And also the dropping of names that generally glorify "worthy" dwems (dead white European males), but don't really describe what things are really like and tend to end up confusing people. This allows peoples superiorities as well as deficits to be considered ( e.g.  the superior honesty, in general, of alternasocics (people who interact in an alternative way) who have been given the label "Asperger's Syndrome"

 

There are quite a number of definitions of neurodiverse people. And this is still a matter of legitimate debate, with many people having different definitions. We favour quite a broad definition, as Wikipedia certainly has also done, as we want to ensure that people's needs and aspirations are met rather than that someone manages to invent a new label for someone else. So, we propose that neurodiverse people are seen as disabled people whose processing differences, especially neurological processing differences make them disabled people as defined in 1. We feel, however, that it is unhelpful to all concerned to include people with low functioning autism (Kanner's Syndrome) or global learning difficulties (aka differences)(low-functioning in every respect(whether developmental or acquired or degenerative), except where there are "islets of ability" (or talents), or areas of markedly increased . We thus reject the concept of an ever-broadening "autistic" or "neurodiverse" "spectrum". We embrace instead the concept of a "neurodiverse continuum", which however, excludes those people with low-functioning autism and other conditions who do not meet our definition of neurodiversity.

 

Neurodiverse people tend to have the same access needs and similar support needs. Developmentally neurodiverse people, however, tend to be far more creative than other neurodiverse people, though there are very rare exceptions where adult stroke and other brain injury survivors have acquired a new ability ( e.g. three recorded cases of stroke survivors acquiring a new ability to write poetry). People with some degenerative conditions, such as "Alzheimer's" can go through a creative "teenage" phase, but then pass out the other end as the condition progresses.

 

In practice, it is helpful to divide neurodiversity into four broad groups, though it should be noted that categories (1) and (2) do tend to overlap and the "environmental insult" in early childhood may well result in someone who :

 

(1)           Developmental

 

This includes those with labels such as (developmental) dyspraxia, (developmental) dyslexia, attention deficit (hyperactivity) disorder (ad(h)d), tourette's syndrome, asperger's syndrome, etc. If this is triggered by some sort of injury or other "environmental insult" then it must be at such an early age that the person can not remember having been any different. This group can rarely get compensation, and has generally never been "habilitated", let alone "rehabilitated".

 

(2)           Acquired

 

This includes traumatic or acquired brain injury survivors whether directly through a head injury or through a stroke, or other means (such as a tumour or in reaction to an injection). It should be noted that, if this happens early enough in life, this may well be form all or part of the "environmental insults".

  

(3)           Degenerative

 

These are degenerative neurological conditions, during which someone at least goes through a phase of neurodiversity. Such as Multiple Sclerosis, Parkinson's and even Alzheimer's. With some conditions, however, they may or will degenerate beyond the point where they can be considered to be neurodiverse.

 

(4)           Combined or mixed

 

Can be things like cerebral palsy, where there is a trauma around the time of birth. Also, if the brain injury was the trigger, or if a developmentally neurodiverse person has a brain injury later in life (in which case the developmental neurodiversity can be described as pre-morbid).

 

(5)           Autism

 

We are confining this to low-functioning autism (returning it to the 1960s definitions of it), as the "broadening out" of the autistic spectrum may have been good business for some people, but has led to confusion. The support needs of a low-functioning non-verbal autistic person are self-evidently highly different from those of a person with alternasocia (aka Asperger's Syndrome).

 

However, in terms of needs, autistic people lead the way. They tend to have the highest levels of sensory overload, etc. Therefore it is vitally important to make the environment accessible to even the lowest-functioning autistic person. By doing so you will help to make it accessible to all neurodiverse people. A number have their own particular needs, such as being Makaton users.

 

3.   We intend to concentrate on unmet needs that are not fully appreciated.

 

Most people realise that spell checkers, etc., are needed. But, few realise how much things like organisational software, and personal assistance, can benefit many if not most neurodiverse people.

 

Apart from the problem that most people who are developmentally neurodiverse do not realise that they are developmentally neurodiverse, let alone have access to even proper diagnostic services, including systematic confidential population screening, which we would recommend, and tend to be mislabelled with everything from depression to schizophrenia, the most important unappreciated needs tend to be:

 

3.1.      Access to non-open plan environments. This situation is getting worse and worse with the open plan and standardisation manias. What is needed, instead, is a flexible environment, an Individually Controlled Environment (ICE), in which, like in a "good old fashioned office" (apart from wheelchair access and hearing loops, etc), everyone is able to control their own individual temperature, light, textures, colour scheme, air flow, sound environment, and smell environment, and to be able to screen off their own area (or open it up if need be). This is eminently achievable using existing technologies (including, in extreme cases, creating rooms within a room). The same thing applies to modes of transport and housing and can lead to the retention, with slight modifications, of some old train carriages so that people can sit in their own quiet compartment (with CCTV backup), and converting some of the existing "Quiet carriages" into "silent carriages". The highest standards on noise insulation in Europe are currently to be found in Austria.

 

3.2.      Access to gluten-free and milk-free products (both medicines and foods).

 

4.   Other groups who can benefit

 

A study done by the Greater London Authority (GLA) in conjunction with the Trade Union Disability Alliance (TUDA) and others, and published in 2006, it was found that one of the greatest unmet needs across all types of disabled people, was for quiet housing and workspaces.

 

Religious groups and various people who share their dietary preferences also benefit, especially those with fasting requirements (Hindus, Jews, Jains and through to some Christians (most especially Orthodox Christians (above all True Orthodox Christians) or the need for constant peaceful and (very largely) silent undistracted prayer (such as (especially True) Orthodox Christians (who call this "hesychia" and who have sometimes had to fight Western crusaders and others for this right).

 

5.   Finance – saving by not locking up

 

A hugely disproportionate proportion of people in jail are neurodiverse, especially developmentally neurodiverse, normally undiagnosed. Also, a lot get wrongly branded as liars because of their memory and sequencing problems, differences in tone and intonation and often physical differences in terms of being able to keep eye contact, other aspects of body language (both productive and receptive, proprioception, etc).

 

Instead their creative potential needs to be realised and their interests channelled, whether it is in strategic thinking, fantastic knowledge of railways and/or buses, great art, or whatever. Such as an interest in dates and True Orthodox Christianity and history and thus correctly predicting that Al-Qaeda would attempt to attack in and around the Feasts of John the Baptist (Beheading (9/11(New Style (NS)(American) (11/9 (Global Standard)/29/8 (Old Style (OS), Nativity (7/7(NS), 24/6 (OS), and, of course, the latest plot (in Docklands, was uncovered and thwarted (are they finally beginning to listen? on the Feast of the Beheading of John the Baptist).

 

6.   Rejecting the one size fits all universal mediocrity model of standard Human Resources.

 

This means following Aileen Quinton's Revealing Excellence model of ability, which is fully supportive of alternability, and which seeks to stop people from doing what they're useless at and to redesign the entire structure of the workplace around what people are good at.

 

There is, thanks in part to new EU directives which call for broader interpretation of the laws on disability in employment, now some helpful case law (the Southampton College Employment Appeals Tribunal (EAT) case (2005) (see TUC disability employment guide (available free from them) which establishes that, in restructuring situations, employers have to consider creating new jobs designed around disabled employees needs.

 

A key task now is to extend this from restructuring to all situations.

Appendix 6

Key quotes and principles informing this document:

1. St. Photios the Great, Patriarch of Constantinople:

“The greatest act of love is to tell someone the truth”.

2. St. Maximos the Confessor, who still managed to speak, despite having his tongue cut out by those who persecuted him, including all five ancient Patriarchates then in existence:

“To fail to tell someone they are in error is an act of hatred”.

All 5 patriarchates were eventually persuaded that St. Maximos the Confessor was right to condemn Monothelitism. The editor humbly hopes that between us we may also find what is the right course of action.

This document tells the truth to the best of its ability and is therefore intended as an act of love. It tries to avoid acts of hatred. The editor humbly apologises for any way in which it falls short.

APPENDIX 7 DRC NEURODIVERSITY GROUP MANIFESTO OF NEURODIVERSE PEOPLE (Drafted by Adrian Whyatt and accepted unanimously and unamended by that group in 2005)

NEURODIVERSITY MANIFESTO

 

TWO IN THREE – ALTERNABILITY AND UNLEASHING THE  TALENTS AND ABILITIES UNIQUE TO NEURODIVERSE PEOPLE (NDS) TO CREATE "A BETTER LIFE FOR ALL"  BY

 

USING INVEST TO SAVE AND OTHER PROGRAMMES TO LOWER TAXES AND IMPROVE SERVICES FOR ALL

 

BY INVESTING IN NEURODIVERSITY (THE OFTEN OVERLAPPING DEVELOPMENTAL VARIATIONS OF DEVELOPMENTAL DYSPRAXIA (10%+ OF THE POPULATION), DYSLEXIA (10%+), DYSCALCULIA (5%+), ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD) (4%+), TOURETTE'S SYNDROME (1% ) AND ASPERGER'S SYNDROME( 0.9%) AND RELATED CONDITIONS, TOTALLING 15%+), TO ENABLE ALL NEURODIVERSE PEOPLE (NDS) TO MAKE A FULL CONTRIBUTION TO IMPROVING OUR WORLD  FOR EVERYONE.

 

A problem that affects all of Society – in terms of greatly worsening the situation in terms of Crime, Anti-Social Behaviour, Drugs, the Environment, the Health Service (including hospitals and GP services), Transport, Education (including Schools) and the Economy – is the lack of neurodiversity friendly policies

 

The Government has pledged to be "tough on crime, tough on the causes of crime" and its current mailing, "A Better Life for All" asks which of the above issues are the most important either facing Britain or in one's own area.

 

The author, Prime Minister Tony Blair has acknowledged the importance of "being tough on crime and tough on the causes of crime". David Blunkett acknowledged in a speech at the 2004 Labour Party Conference "mental health" and "drug problems" and "dealing with the causes and not just the symptoms".

 

"Drugs testing and treatment" are important in tackling crime. Higher incidences of drug taking and addiction have been linked to ADHD.

 

But, all politicians need to unpeel the onion further. Over 67% of prisoners are neurodiverse, well over 4 times their share in the population. None had been diagnosed, according to a 1997 study by Madeleine Portwood at Deerbolt Young Offenders' Institute.

 

In terms of the Health Service, although there are very isolated examples of good practice, there is little or no understanding of neurodiversity, and worse, a great deal of misunderstanding, resulting in a far greater waste of money on mistreatment, complaints, accidents and frustrated assaults on staff than the cost of having proper nd services. Nds face ignorance, or worse, disbelief and antipathy. Underlying characteristics and problems of neurodiversity are often mistaken for depression and/or laziness and/or deliberate rudeness. This may not be helped by the notorious prevalence of dysgraphia (appalling handwriting and sometimes problems with drawing) (a form of dyspraxia) amongst doctors.

 

Misdiagnoses of schizophrenia, instead of Asperger's Syndrome have notoriously resulted in the mistreatment of people and their incarceration for 10 years or more in Broadmoor, as in the Piers Bolduc case.

 

Unsurprisingly, other forms of social exclusion are overrepresented amongst neurodiverse people. A study published in 2003 by the College of Occupational Therapists showed that over 80% of dyspraxics diagnosed after the age of 7 showed negative social outcomes (including mental health problems, unemployment, homelessness, substance addiction and/or abuse by the age of 23) compared with only 13% of the general population.For those diagnosed before the age of 7 and given full support, negative outcomes were in line with the rest of the population. It needs to be added that many nds are not diagnosed until well into adulthood (including sometimes even in their 70s or 80s) and the majority are not diagnosed at all, often being (mis) diagnosed with (secondary) depression.

 

Most nds do not even know what neurodiversity is, let alone that they have it.

 

What is needed in general political terms

 

This was recognised at the Liberal Democrats' Spring 2004 London Conference which unanimously passed a motion on "Disability, especially developmental neurodiversity" noting the huge prevalence of undiagnosed neurodiversity amongst inmates and including a pledge "to work with user-led and other organisations, including the Police, Transport, Housing, Educational and other services to help ensure full implementation of policies meeting the needs of all" nds. This also endorsed the British Council of Disabled People (BCODP)'s "Disabled People's Rights and Freedoms' Bill"   which includes support for a Right to Independent Living based on the Social Model of Disability (removing the barriers that disabled people face rather than regarding their needs as a "problem"). We call on all political and other organisations to do the same immediately at all levels of their policy-making and implementation structures.

 

Nds need, along with everybody else, to see the United Nations' 1991 Paris Principles for Comprehensive Human and Civil Rights in all areas of equality and diversity and other areas of human rights implemented,  right to independent living, which must include the Ten Principles of Independent Living as set out in the Cabinet Office Strategy Unit Analytical Report, Improving the life chances of Disabled People, June 2004, p.160: Information, Peer Support, Housing, Equipment, Personal Assistance, Transport, Access, Income, Education and Employment. In addition, there are specific additional needs which nds and others need, notably: diagnosis and treatment (including for commonly occurring related bowel, allergy and eczema problems; universal tolerance of their differences (not to be called stupid, rude, clumsy, lazy, be mistaken for people with depression); social integration (including social skills training, including for intimate relationships where necessary); and for a supported, structured diet for the many nds who have specific food processing problems, intolerances and allergies as part of their neurodiversity (especially of gluten and milk products); sensory processing differences, e.g. with screening out noise . Above all to be believed when they talk about their problems.

 

Advocacy needs to be guaranteed through the implementation of the 1986 Disabled Persons Act, sections 1-3, and needs to be nd-specific.

 

We support all human rights initiatives, except where these conflict with nd rights and needs.

 

Where specific action to help nds is most needed now

 

1.      Comprehensive assessment and diagnosis on the NHS, especially for adults for whom this often tends to be almost or completely impossible (let alone getting proper treatment) as the medical profession tends not to recognise their problems. This needs, very rapidly, to be moved into a comprehensive screening programme across the entire country.

 

2.      Help with claiming benefits (e.g. disability living allowance and incapacity benefit). Many welfare agencies do not know the implications of their problems.

 

3.      Help with getting disabled person's freedom passes, taxicards and other disability rights and entitlements. For example, many have a statutory right to a disabled person's freedom pass under the Transport Act 2000, s.150 as they cannot drive safely to the standard required by the DVLA. Some find it difficult to travel by public transport because they find it hard to cope with noisy, busy, surroundings.

 

4.      Support in getting and keeping employment. Nds need reasonable adjustments, such as a quiet room to work in.

 

5.      They may have special housing needs, e.g. a quiet environment and occupational therapy support to help with organisational and/or co-ordination problems. Local authorities and Housing Associations tend not to recognise most types of neurodiversity as disabilities, especially dyspraxia and dyslexia.

 

6.      Specialist trained advocacy, especially for adults

 

Where nds can contribute – the alternability model of talents and abilities  

 

An alternability is a characteristic which makes someone superior at some things while at the same time being inferior at other things. All nds are alternable. Nds are "extreme machine human beings" making them far superior to non-nds (neurotypicals (or nts) at some things, and inferior at others. Nds tend to be far more creative than nts and all of the most creative people are nds. Dyspraxics, as non-sequential thinkers will be inferior at sequencing, let alone sequential multitasking, but markedly superior at the lateral thinking required for brilliant strategic thinking. Some nds are brilliant at higher level maths but hopeless at languages or vice versa, but have great difficulty in getting from A to B (or can not get there at all without help). "Alternabilities" are most common amongst, but not confined to, those in the highest 5% of IQ.

APPENDIX 8 The UPIAS Bias Update – or some thoughts on how the origins of the disabled people’s movement in organisations such as the Union of the Physically Impaired Against Segregation (UPIAS) have continued to distort public policy about disabled people and to exclude and/or marginalise other groups of disabled people in the disabled people’s movement itself, especially “new groups” such as neurodiverse people fighting for recognition (INSERTED BY Adrian Whyatt)

APPENDIX 9: FORMAL ENDORSEMENT FROM THE MENTAL HEALTH ACTION GROUP (MHAG) DISABLED PEOPLE’S ORGANISATION OF THIS DOCUMENT WITH AMENDMENTS (Inserted by Adrian Whyatt)

The UPIAS Bias Update

 

The reason for writing this is the need to counter the biases and perceptions of all too many who continue to dominate the "disabled people's movement" and who are, in the words of one prominent member of the disabled people's movement, a wheelchair user who wishes to remain anonymous, "so far up their arse that they don't realise it". This person then went on to add that their own experience of bringing up a family member confirmed pretty much everything that DANDA has submitted on the subject of neurodiverse people and our needs.

 

What was UPIAS?

 

UPIAS was the Union of the Physically Impaired Against Segregation. It was founded by some spinal injury survivors in the fabled era of the '60s and early '70s disabled people's movement. They were all wheelchair users who were quite rightly disgusted by the way wheelchair users were treated by society in general.

 

A leading light in this, who then went on to help found the British Council of Disabled People (BCODP), was Vic Finkelstein, who became a wheelchair user as a result of a spinal injury sustained playing rugby in South Africa in the early '60s. He demonstrated against apartheid and was ultimately exiled to Britain in the late '60s taking his civil rights activism with him, including using the analogy and experience of other civil rights movements.

 

What is the UPIAS Bias?

 

However at the time it was set up the majority of UPIAS members failed to make common cause with the other movements of disabled people, such as the Deaf and the Blind and Mental Health Service Users and Survivors, let alone People with Learning Difficulties (previously known as Learning Disabilities and at that time more commonly known by the horrible term Mentally Handicapped), and never mind people with dyslexia and other learning and social interaction differences (neurodiverse people or nds).

 

All of these groups have been fighting to get in. It does not help either that there are deaf people and dyslexic people who are in denial about being disabled. But the disabled people's movement is still dominated by people who are wheelchair using spinal injury survivors. Many of them seek to deny in practice and sometimes even in theory, the specific needs of neurodiverse people.

 

In the words of David T. Mitchell, PhD, Associate Professor, Director of Graduate Studies, PhD in Disability Studies Program (MC 626), University of Chicago at Illinois, speaking in December 2004 at the London Disability Film Festival Panel Review, in response to a denial from the organisers (all people with apparent impairments) that dyslexia should be included in the Festival: "the Disabled People's Movement has a history of groups being excluded and having to fight their way in to be included". This is the UPIAS Bias. It helps to make the underfunding of disabled people's organisations even more inequitable by promoting the kind of fractiousness which means that people do not want to fund the disabled people's movement and even less the unfashionable groups such as ourselves whom others do not want in. Research by the Direct Action Network (DAN) found that 96% of voluntary sector funding went to organisations not controlled by disabled people.

 

We say: if it does not include neurodiverse people and their organisations, and meet their consent and met their needs, then it is not valid disability policy because of our sheer numbers (15%+ of the entire population).

 

Testing a document, etc for UPIAS bias

 

Documents on general disability policy need to reflect the prevalence of  different disabilities in the general population by explicitly naming their prevalence and including them proportionately in their examples.

 

They also need to show the reality that 80% of disabled people have more than one disability.

 

They must show that non-disabled people are in fact only pre-disabled.

 

They must explicitly shoot down stereotypes. They must show the reality that over 70% of impairments are hidden.

 

They must show that Dyslexia and developmental dyspraxia are over 20 times as common as wheelchair users and that there are only 10,000 Braille users in the country.

 

Attitude to open plan environments

 

All conversions from a closed plan environment (accessible for neurodiverse people) into open plan environments are to be opposed, even if it means that they become "wheelchair accessible", "deaf accessible", "blind accessible", "partially sighted accessible", and "learning disability" accessible. BECAUSE, put together, all these groups are less common than neurodiverse people. Also, at least 20% of the people who are members of this group are themselves neurodiverse.

 

Historical justice

 

Given the historical and continuing exclusion of neurodiverse people, special efforts to build capacity are absolutely necessary.

 

It is also essential that the total unacceptability of the UPIAS bias of the disability (and political) establishment and their propensity to exclude neurodiversity is made clear.

 

The environment was far more accessible for most neurodiverse people 100 years ago than now. This continued worsening of accessibility and deeming the environment "accessible" when it is not for neurodiverse people, is unacceptable. Likewise, obsession with "multitasking" as opposed to legitimate "specialisation" as well as an obsession with just about everyone doing their own administration.

 

THEREFORE EACH AND EVERY DOCUMENT, CONSULTATION, ETC., MUST BE TESTED FOR UPIAS BIAS.

Copyright Adrian Whyatt, 2005. Under copyleft principles general permission is given to quote from this and to use any concepts in it, including that of UPIAS BIAS, provided that acknowledgement is made and there are no distortions to the meaning of any concepts or to overall meaning.

APPENDIX 9: FORMAL ENDORSEMENT FROM THE MENTAL HEALTH ACTION GROUP (MHAG) DISABLED PEOPLE’S ORGANISATION OF THIS DOCUMENT WITH AMENDMENTS (Inserted by Adrian Whyatt)

Hi Adrian

These amendments look OK to me.

We would be delighted if your could become a co-opted member of the Board of Trustees immediately, with a view to standing for election as a Trustee at the next AGM.

David [Glennister, Chair, MHAG]

 

From: Adrian Whyatt [mailto:adrianwhyatt@gmail.com]
Sent: 24 September 2007 19:19
To: solidoak@solidoak.karoo.co.uk; Mental Health Action Group; Colin REvell; adrianwhyatts.colinrevcor1@googlemail.com
Cc: GLAD2007GreaterLondon ActiononDisability; m.goring@ntlworld.com
Subject: Fwd: Your formal endorsement to this document sought (with any reservations/amendments by email by Tuesday am (after telling me over the phone). I will ring you at 12 noon to see how you are getting on. Was... Urgent additional new information & will

- Hide quoted text -

 

Fwd: Your formal endorsement to this document sought (with any reservations/amendments by email by Tuesday am (after telling me over the phone). I will ring you at 12 noon to see how you are getting on. Was... Urgent additional new information & will go out Tuesday or Wednesday...was...Amendments in response to criticism. Comparative documents.

 

Dear all at MHAG

 

Please see above. I know you already support the Charter, which is acknowledged in the document. If this is not enough time, then please let me know whether or not you support the following key recommendations:

 

1. It is to be a "Living Document" which is to be updated regularly.

 

2. To ensure accountability to disabled people and our organisations, a Neurodiversity & Autism Action Group (NAG) Implementation (& Development) Group will be set up.

 

3. Independent Living (as defined in the Charter) is to be the main goal. Within this three of the most key areas for action include:

 

3.1. The Accessible Environment (in the broadest sense, including Homes, Transport, Offices, Places where services are delivered, shops, Places of Entertainment, Places of Worship, other working and street environments, etc).

 

3.2. Health (including metabolic testing)

 

3.3. Advocacy (in all its forms).

 

Yours

 

Adrian

 

P.S. Colin has asked me to confirm whether or not I am willing to become an MHAG trustee. The answer is, of course, yes. But, of course, that is up to you and I am willing to do whatever you feel is best.

 

P.P.S. My email is still down and is likely to remain so for the rest of the week. So, I am using a TU internet cafe when I can. I won't be able to access it tomorrow and will have little time to access it on Wednesday & Thursday because of a major Orthodox Christian feast, followed by the AGM of Hammersmith & Fulham Action on Disability (HAFAD) (Thursday 2-5pm) of which I am a trustee.

Re: Urgent additional new information & will go out Tuesday or Wednesday...was...Amendments in response to criticism. Comparative documents.

 

Cc. Colin Revell, mediator

 

Dear Jo

 

As you know I would like us to "speak with one voice". So, I am happy to delay sending it out (conditionally) until Tuesday or Wednesday. But, as you also should know, in the words of a famous trade unionist: "If you surrender all of your principles to gain office, you have office, not power".

 

Hence, as long ago as last March I reiterated that there were "bottom lines". In writing. This was confirmed in person and in writing repeatedly, including in August.

 

That position has not changed.

 

Also, in formulating my response I have the right to consult whom I like. The MHAG document has already gone out to Norman Green, NAS Company Secretary, to form part of items for the NAS to consider in a short notice meeting with the Department of Health. It is stand alone in any event.

 

In addition, I received a copy, in my post box when I got home last night, of the DRC's Celebrating the Journey, its legacy document (also available at www.celebratingthejourney.org.) On p.38 it has the following statement:

 

Autism and Neurodiversity Action Group

 

"The DRC pioneered the establishment of this Group concerned with strengthening the rights and prospects of people with autistic conditions and neurodiverse conditions such as Asperger's Syndrome, ADHD and aspraxia. The Group has advised on a range of DRC services and policies and has set out a statement of proposed commitment and action for the future."

 

"Aspraxia" is clearly meant to be dyspraxia, but the general public wouldn't know it. Unlike with the Learning Disability Action Group and the Mental Health Action Group, where there is a detailed description of what they have done, and pictures of the groups (naming all the members), whether present or not. Differences must replace conditions. This must also be amended to "dyspraxia".  Dyslexia, dyscalculia, tourette's syndrome, and acquired neurodiversity (after strokes and brain injury) and degenerative neurodiversity (a feature of stages of conditions such as Alzheimer's, Parkinson's Disease and MS, etc) must be added. And some of what we have done (especially MHAG's declaration, the Conference results and ICE). In addition it should be stated that, for example, the Liberal Democrats now use neurodiversity in some official documents, such as Conference Access Group reports.

 

There is space for all this on p.38.

 

Actions speak louder than words, always.

 

I don't especially care who is attributed overall authorship as long as each section and contribution is correctly attributed to the person who wrote it.

 

I regard my own contribution, apart from any typing errors and remarks which directly criticise individuals, to be non-negotiable. If there are differences of opinion they must be honestly stated as items for debate.

 

I am taking on trust any amendments you make to the original document you have presented, which should go after my initial introduction setting the overall scene.

 

Noone else has objected to any of my additions, other than the things already amended, apart from being, in one instance, slightly unclear about who had authored what. Perhaps the logical thing would be to state that the beginning, "Setting the Scene" was drafted by me, with input from others, and that the main bulk was drafted by you, except where otherwise attributed. With attributed amendments.

 

It is imperative to remember that we are talking on behalf of everyone in the neurodiverse community. I am not out for personal glory, but do want to see the copyleft principle of correct attribution followed.

 

Finally, I am glad that we managed to talk more calmly yesterday and want to thank Colin Revell especially for all his support.

 

I will need to be able to see the results of your meeting with Bob Niven by Monday night in time for me to access it at a library or at an internet cafe on Tuesday and then to talk to MHAG. I will be out all day Sunday and am attending an important meeting (the Son-Rise programme) on Sunday evening.

 

However, I hope to be back by 10 or so on Sunday evening.

 

It is important to remain calm in all this and to realise that my concern is to make sure that as much action as possible happens following the closure of the DRC. I will also publicise whether or not the group has "sold out" by rejecting the broader disability and disabled people's and social inclusion agendas.

 

We have to ensure that our agenda is not watered down.

 

It is my intention to present whatever report I agree to to the next NAS Council meeting. I also already have an offer within the Disabled People's Movement to have it published on the website of one of their leading organisations. Come what may.

 

Hope this helps to clarify my position, which I feel is reasonable under all the circumstances.

 

Yours sincerely and with fond regards

 

Adrian Whyatt, Chair, GLAD. In an official capacity.

On 9/21/07, Jo Todd <jotodd@key4learning.com> wrote:

Hi Adrian 

Thank you for this - just got in from work and have another meeting to go to wont be able to put in my amendments till Sunday hope you will be kind enough not to send anything. I will do it on Monday as agreed with Bob I would  also like to discuss with you others I will to send it when it has all views are expressed. This is what we discussed on the phone there is no point sending it unfinished when all information is not in the document. Two documents will also dilute the message lets speak from one agreed document.Hope this is considered a reasonable request as I am the primary author with the rest of the ND group.

Regards

Jo Todd

jotodd@key4learning.com

Neurodiversity, Equality and Human Rights

Neurodiversity, Equality and Human Rights

Table of Contents

BACKGROUND 3

The DRC Autism and Neurodiversity Group 3

INTRODUCTION 3

WHO ARE THE NEURODIVERSE? 5

Cognitive processing differences 5

Root cause 5

Effects of Neurodiversity 7

Strengths and Talents 10

Terminology 11

How many people are Neurodiverse? 12

Screening and Assessment 13

SOCIAL FRAMEWORKS 15

Maslow’s hierarchy 15

Every Child Matters 15

Neurodiversity 15

HIERARCHY OF NEEDS 17

Physiological Influences 17

Safety and Contentment 18

Acceptance and Opportunity 19

Valued and Respected 20

Well–Being and Fulfilment 20

THE DRC PRIORITIES RELATED TO THE NEURODIVERSE 21

9 Priorities for a New Agenda 21

1. Promoting a culture of equality and human rights. 21

2. Bringing an end to child poverty 22

3. Increasing life chances through learning and skills 22 4. Ending poverty and widening employment opportunity 23 5. Increasing democratic participation and active citizenship 24 6. Developing a social care system fit for the future 24

7. Tackling health inequalities 25 8. Meeting the future housing challenge 25

9. Building stronger, safer communities 26

APPENDIX 1 DRC MANIFESTO ON BEHALF OF PEOPLE IN THE

NEURODIVERSE COMMUNITY 27

APPENDIX 2: RELEASING EXCELLENCE - AILEEN QUINTON 29

APPENDIX 3 DANDA 54

APPENDIX 4 NOTES ON SENSORY SENSITIVITY 55

Background

The DRC Autism and Neurodiversity Group

The aim of the Autism and Neurodiversity Group was to begin to explore and address how better understanding of the needs of the Neurodiverse could be achieved; the aims of the group are outlined in the initial Manifesto that was produced (see Appendix 1).

Introduction

The work undertaken by the Disability Rights Commission since its conception has resulted in employers and educational establishments in the United Kingdom implementing initiatives and policy on disability. There are examples of areas of excellent practice in understanding and environmental change to cater for some disabilities.

The representation of different groups through dialogue with the DRC has broadened understanding, particularly with the work achieved by the Mental Health Group and the Learning Disability Group. The recent establishment of the Neurodiversity group has resulted in improved awareness, however this group is the last to be in dialogue with the DRC and has not yet fulfilled all it hoped to achieve. The three groups together most probably represent the largest proportion of disabled people and the overlay in the sectors make it necessary for momentum to continue.

Despite the efforts so far, we are only in the foothills of real integration of the

Neurodiverse in the U.K. and we have a long way to climb before we can be satisfied.

We would suggest that people with Neurodiverse conditions are the least likely to be effectively integrated into society.

“ It has taken seven years for the DRC and Sitel to understand Neurodiversity as an employer. That understanding cannot be allowed to be lost under the CEHR.”

Disability Helpline Advisor in Stratford July 2007

The adjustments to address the hidden impairments found in Neurodiversity are often simple in relation to Equality and Human Rights. Once better understood by educators, employers and society at large a huge difference can be made to the most vulnerable in our society. In addition their specific skills may be liberated to the benefit of society.

A report following research study commissioned by the Mayor of London on the experiences of disabled Londoners concluded:

“People with Hidden Impairments experienced a serious lack of understanding and consequently had their rights undermined”

Towards joined up lives

Mayor of London, March 2006

We suggest it is imperative for momentum not to be lost and a more broad range of understanding of the nature of Neurodiversity, Learning Disabilities and Mental Health conditions is required. Their specific impairments affect the day-to-day living of a great many people.

In every aspect of the disability agenda, it is these groups that are most marginalised and least integrated. The action taken for those with mobility and sensory impairments continues to be the primary evidence of the nation’s understanding and adjustment.

There are different agendas for people who have mental health issues, learning disabilities and Neurodiversity. All three groups have overlays and where all three conditions are present individuals are vulnerable because provision does not take account of these most complex of impairments.

Who are the Neurodiverse?

The term “Neurodiverse” is new and challenging; it is important to understand the background to the term to clarify who comes within this spectrum.

It is inclusive of people with diagnostic assessment of developmental conditions such as: Asperger’s syndrome, Non-Verbal Learning Difficulties (NVLD), Semantic-pragmatic disorder, Sensory integration difficulties, Dyspraxia, Dyslexia, Dyscalculia and Attention Deficit (Hyperactivity) Disorder. Others may have a Neurodiverse profile that has been acquired or is part of another condition where often Neurodiversity is not seen as the primary factor. It has been suggested by Angela Fawcett (DFES 2001-2002) that there may be a 30% overlay between conditions; others including Richardson and Portwood have suggested even more. Co-morbidity is hard to disentangle, so better assessment is important. Meanwhile social accommodation of symptom is an imperative.

Cognitive processing differences

Simplistically Neurodiversity refers to the differences in the way that people’s brains handle information. It encompasses the many different ways that people can be ‘wired.’ There are many overlays in symptom among those who have mental health problems or learning disabilities and yet both groups of people can also have a Neurodiverse profile. However the disabilities are separate and not all those who have mental health conditions or learning disabilities are Neurodiverse. The key identifier of Neurodiversity is a disparity of strengths and weaknesses. Many people with Neurodiverse profiles have extraordinary talents that go unrecognised and underutilised by a society that lacks sympathy and understanding.

Root cause

In presentation the Neurodiverse model may be biological, cognitive and behavioural. The reason for the profile may be a result of Neuro Developmental differences: This is predominantly the case with those conditions referred to above, which result in the jagged or spiky processing profile.

Other individuals may present characteristics that are similar to the Neuro

Developmental differences. Processing differences may be acquired, as the result of a medical condition, brain injury or be a substantive part of another condition .

These may be:

• An onset condition like a brain bleed or stroke

• Intermittent and unpredictable conditions which may result in a Neurodiverse profile, e.g. diabetes or epilepsy

• Progressive conditions that affect cognitive profiles such as Multiple Sclerosis

• Stable neurological conditions such as Cerebral Palsy may have changing needs due to development or aging

It is important to emphasise that Neurodiverse conditions may affect any group of people and so may overlay other disability factors such as mobility or visual impairment.

It is the cognitive effects of the conditions that require better understanding and appropriate adjustment for improved equality and Human Rights. The social model must be considered in relation to the way the individual cognitively responds in day-today living, this often being in such a different way to the majority.

Everyone is different, that is the joy of humanity. Human beings are individual in the way they respond to events, experience and stimulus. Therefore, in the widest sense, we could all be considered to be Neurodiverse - we all think differently and are on a continuum of strengths and weaknesses. The Neurodiverse have always been part of the population, but often have been labelled with terms such as lazy, eccentric, gifted or “strange weirdo”; the labels being consistent with a lack of understanding from the labeller.

Although many individuals with neurodiversity have contributed to society, it is suggested some social changes are making it harder for them to do so. The increasing focus on formal measurement, prescriptive requirement for academic qualifications and appraisal through competency criteria are all examples where unusual cognitive profiles are subject to institutional discrimination. Others have been, and still are, marginalised because of their different presentation.

There is a government agenda for people to contribute to society at every level. Whenever appropriate this is by being part of the workforce, yet there are many workplace infrastructures that are discriminatory to this group because of lack of flexibility. Most people with disabilities want to work; this is definitely true of the majority of those who are Neurodiverse. Lack of adjustment is all the more deserving of censure as the talents of this group are wasted.

Effects of Neurodiversity

Neurodiverse people demonstrate differences, in a range of combinations, in the way that they:

• understand and use verbal and/or non-verbal communication and interpersonal skills such as: o difficulty sending messages efficiently to the verbal apparatus of speech, or controlling the muscle sets involved

  • organising thoughts to put into words efficiently o saying the appropriate thing at the correct time o understanding body language, facial expression or tone of voice

• express and share emotions such as; o the emotional and psychological effects of living with a long term profile, stress, depression, loss of self image

  • the impact of cognitive/behavioural issues o differences in emotional intelligence, sometimes including the inability to read the emotions of others

  • management of anger, frustration, anxiety or emotion

• interpret and make sense of visual and spatial information from their surroundings such as; o moving around o accessing information, either written or on a computer, using timetables or maps

  • difficulty with directions and/or spatial awareness o reading and carrying out instructions o learning to drive o reading instructions or contents on food, medicine etc. o difficulty accessing printed material, especially when in fancy fonts and on figured paper

• position themselves relative to other people and inanimate objects such as:

  • communicating with others o using technology, such as computers, telephones, photocopiers or machines, such as ticket barriers, turn-styles

  • using medical equipment o using a car or bike o difficulty using household equipment, such as an iron

• process visual and auditory information:

  • auditory and visual sequential memory o auditory and visual discrimination which may result in spelling or reading difficulties, visual and auditory distractibility or inefficiencies with visual and/or processing

• plan and carry out sequences of movements such as :

  • running, walking, ironing, using an escalator or stairs, o writing, keyboard skills, apparent clumsiness o travelling and driving o fine and gross motor dexterity for a variety of life tasks

• are overtly sensitive to environmental stimuli such as; o light, noise or air currents o perfumes, smell, chemicals, foods, clothes and medicines o fabrics (see appendix 1) o crowds o auditory and visual distraction o hypersensitivity to touch

• use oral and/or written language such as:

  • talking to others, giving presentations, speaking in public difficulty with language – expressive and receptive

  • organising ideas, constructing sentences, spelling and planning with both oral and written language etc o talking excessively

• organise both internal thoughts and external behaviours such as:

  • difficulties with appropriate use of behaviour and speech to others, social interaction

  • frustrations in communication to others face to face, by phone or from written information

  • learning, doing or applying a sequence of instructions, such as carrying out instructions given by a dentist, doctor, manager, tutor, teacher or others

  • impact on relationships in family, work and in society at large

• manage and organise time such as:

  • inability to plan or prioritise, procrastination o no concept of units of time, therefore difficulty perceiving how long things will take

  • life management difficulties – regular eating, sleeping, washing, shopping, paying bills and carrying out regular household duties, false busyness with an inability to focus

  • punctuality

• problem solve in both explicit and intrinsic situations such as:

  • inability to cope with all levels of problems including any change in circumstance

  • impulsivity and instant response rather than thinking through issues, getting ”bogged” down and finding it hard to generate solutions

  • Using maladaptive strategies - running away or being confrontational because of inability to arrive at a solution

• use and understand mathematical concepts and number information such as:

  • managing money, working out time tables, remembering pin numbers, telling the time

  • understanding quantities of medication, food etc

• maintain attention and concentration such as:

  • external distraction, e.g. noticing irrelevant detail of visual or auditory stimulus

  • internal distraction, e.g. having the urge to change focus or task also loss of train of thought

  • difficulty in focusing on relevant information if there is other distraction o mind wanders, drifts or day dreams o starting tasks and not completing, difficulty multi-tasking

• manage memory both short-term and working memory such as:

  • difficulty remembering appointments, misplacing things, losing time, forgetting instructions, taking longer to learn some tasks than others

  • having a brilliant memory for certain things that can become over absorbing

• process information such as:

  • in an exam when they may process very slow consequently taking longer than the majority, when reading or writing

  • when learning new tasks and having difficulty keeping up with conversations particularly when speaking in a group

  • sometimes processing very quickly so that others do not understand, which results in frustration and sometimes apparent rudeness

This is a brief description of some of the effects of Neurodiversity that may impact on an individual’s interaction with the world. It is important to understand that when a cluster of these differences occurs it will be unique to an individual and so demands an individual response. The processing differences may have an enormous impact on the way an individual succeeds in education, work and living skills.

The wider view of Neurodiversity has implications for identification and better research of individual conditions. However if the umbrella characteristics are better understood in the wider society, the antecedents and labels become less important than the social adaptation to accommodate the Neurodiverse profile. Ramps are useful to wheelchair users irrespective of the condition that places them in a wheelchair.

Strengths and Talents

The key to understanding Neurodiversity is the disparity between areas of skill and areas of deficit. Unless the disabling part of the profile is recognised, understood and accommodated, the focus on skills is overshadowed by the difficulties. This is most clearly analysed by Aileen Quinton in her document on Releasing Excellence in Policing (Appendix 2). Her analysis of Neurodiverse strengths highlights the wasted potential in our Workforce and society and in the management of people with extreme profiles of strengths and weaknesses.

DANDA is a charity run by people with Neurodiversity for people with N.D. Their rational for adopting the term is a useful insight. (Further information may be found in their manifesto Appendix 3)

Terminology

We suggest a more comprehensive understanding of Neurodiverse people is required in our society. Terminology often “clouds” or “smoke-screens” appropriate understanding and solutions to the core issues. The terms used are often locked into diagnostic, medical and evaluating educational models rather than addressing the social model of environmental adjustment.

In Europe the term “Learning Disability” is often used in the same way as the term

“Mental Retardation” is used in North America whereas in North America the term

Learning Disability (LD) is more consistent with the European term Specific Learning Disability (Spld). Specific Learning Disability suggests there are specific areas of impairment in overall functioning and levels are not globally low.

Terms can create stereotyping and result in underachieving amongst the Neurodiverse group. The processes of assessment and testing are poor for assessing the spectrum of performance in the cognitive map. In education particularly the majority of testing is on acquired knowledge not how the individual brain learns best. Employers require more complex skills than those conventionally measured and tested in education and people with Neurodiverse profiles hit glass ceilings. The educational model is based on personal performance whereas the work- based evaluation is often on team performance.

Symptoms sometimes result in a medical or educational diagnosis that gives the condition a name without the depth of understanding or support on the implications for day to day living. For example the term specific learning disability is often inappropriate for a high functioning individual who has dyspraxia and is a successful academic learner. It does not express clearly a difficulty with interpreting and making sense of visual and spatial information from physical surroundings.

We should now be ready to abandon or re-evaluate these terms from the educational or medical model We suggest that for the social model of disability a more overarching definition of Neurodiversity would create more accessibility for society’s overall understanding for a range of profiles.

How many people are Neurodiverse?

There are no reliable figures about the number of people who are Neurodiverse but charities representing different named groups suggest 1 in 10 mildly affected and 1 in 20 severely affected (British Dyslexia Association, Dyspraxia Foundation etc). This includes estimates of those not formally diagnosed or disclosed. Without better assessment regimes unfettered by financial implications within the education and medical systems exact figures are difficult.

For people with formal diagnosis the UCAS University application figures give an insight into the proportion of students with hidden impairments.

5.5% of applicants declare a disability, 60% of those would meet the description of Neurodiversity.

Autistic disorder

Mental health difficulties

Unseen (eg diabetes,epilepsy,asthma)

2+ disabilities / special needs

Other disabilities / special needs

Blind / partially sighted

Deaf / partial hearing

Wheelchair/mobility

Learning Difficulty (Dyslexia, Dyspraxia etc.) UCAS Applications 2005

It is ironic that the only reliable figures for Neurodiversity are from UCAS where people have the likelihood of entering Higher Education. It is suggested that Further Education will have a higher proportion of Neurodiverse people and the highest proportion will feature in the group of people who are not in employment education or training. Yet in this group there is no funding for screening assessment or analysis of need.

The DRC have identified that work age adults need higher skills to adapt to current market needs and that only 23% of disabled adults with no qualifications are in employment. Even when in employment, lack of qualifications or few qualifications can present a barrier to progression - and keep people in low paid roles therefore these individuals tend to remain low paid and on the periphery of the society’s wealth.

We suggest help towards this is through better identification of Neurodiverse profiles and subsequent focused help. The Government is putting large amounts of money into employment schemes where the agenda is on providers fulfilling “targets”. The help is often misdirected because of the lack of understanding of specific needs. Because of target figures providers shy away from the “un-abled disabled” or those who are “not work ready” – Neurodiverse individuals are highly represented in these vulnerable groups.

Screening and Assessment

As we have suggested, and a number of studies have indicated, higher numbers of Neurodiverse people are found amongst those not in employment, education or training. In these most vulnerable groups there are no clear paths for identification, although arguably a higher need. It seems ironic that the only reliable figures for Neurodiversity are to be found amongst those who have reached Higher Education.

“Adults go through a revolving door of courses with no clear purpose other than

continued participation”

“Current provision for adult learners with disabilities is costly and does not provide value for money”

The Adult Learning Inspectorate in England Greater Expectations: Provision for Learning Disabilities (2006)

Social Services, Jobcentre Plus, Training Providers, Careers Advisors and Work Step and Pathway Mentors have no access to screening tools or understanding of Neurodiversity. A standardised screening tool would at least flag up how to help individuals more effectively and where necessary the appropriate next place for referral.

Assessments by these providers is at best simplistic focusing on Basic Skills assessment without investigation of cognitive issues that often contribute to difficulties with reading, writing and numeracy.

The responsibility for Neurodiverse identification is often a shuttlecock between Health and Educational providers. Assessment is often necessary to access further help (for example educational exam adjustment or receipt of support through Access to Work).

Assessments may be obtained through private assessment from: Psychiatrists, Psychologists, Occupational Therapists etc. Other less well-qualified private assessments, with follow up promises of cures are also offered. All private assessments whether professionally validated or not are usually unavailable to the most vulnerable in our society.

As early as possible in education, children who are having issues with learning social integration or behaviour problems should have screening for Neurodiversity. Screening should be seen as preventative measure, it is important to remember 40% of children do not gain 5 A-C GCSEs. This is not always a reflection of ability, but often an indication that students are not taught in the way that they learn best or not given an appropriate curriculum or adjustments, e.g. coloured overlays can make a tremendous difference to the Visual Stress that affects some students’ reading skills. Despite a commitment by Lord Adonis that the government would investigate Visual Stress, neither the Education nor the Health Department will take responsibility for funding screening. (The screening pack costs £40.00 and requires only minimal training. Coloured overlays cost about £2.00 each and quantity reduces the figure dramatically.) The use of an overlay can double the reading speed of a student with certain visual deficits. Many students who reach Higher or Further Education have screening – but individuals on the periphery of society unfortunately don’t get this opportunity.

Even after success in Higher Education Neurodiverse graduates have difficulty gaining jobs or sustaining them. Academic success is not necessarily a pass to successful employment and universities do not generally equip Neurodiverse students with tactics appropriate for the workplace. The focus in education is on personal development and personal qualifications. Many Neurodiverse students successfully navigate this process but fall by the way side later on. Issues arise in initially applying for a job. Job profiling is often aimed at a Psychometric tested Neurotypical profile that those with a Neurodiverse profile cannot match. If the Neurodiverse do get a job the critical probationary period is evaluated against a set of criteria that they find difficult to fulfil. This vulnerability results in job loss, erosion of self-esteem and eventual work placement not commensurate with academic qualifications.

Social frameworks

The social model of disability focuses on the creation of appropriate environment. The processing differences of Neurodiverse people challenge conventional structures at all levels of social need.

Maslow’s hierarchy

In the 1950s Maslow developed the Hierarchy of Needs model and the hierarchy of needs theory still remains valid . It is acknowledged as a crude and simplistic model to relay complex issues. Yet its sentiment is fundamental to Equality and Human Rights. Maslow explains how needs motivate us. He suggests we must satisfy each need in turn however this is sometimes seen as rigid interpretation of the model .it is suggested it is used as a guide to generate thought.

Every Child Matters

Following the death of Victoria Climbie, the Children Act (2004) identified five outcomes, which need to be met to ensure children have the opportunities they deserve. These were the result of the Government working with partners from the statutory, voluntary and community sectors. The outcomes are interdependent. They show the important relationships for children’s well being in our society. They are given legal force through the 2004 Children’s Act and are inspected under the legislative framework of Every Child Matters. They have parallels with Maslow’s Model.

Neurodiversity

Considering both of these models in relation to Neurodiversity highlights major issues of social deficit. These occur when an individual has a Neurodiverse profile that impacts on their basic needs, this has an effect on the whole hierarchy of needs and deprivation and difference at each level isolates the individual even more. Recognition of the profile is fundamental if the Neurodiverse individual is to enjoy equality. The social model of disability requires a deep understanding of what sabotages the hierarchy of need for someone with a Neurodiverse profile.

Maslow	Every Child Matters	Neurodiversity
Physiological Influences	Being Healthy	Neurological- Influences
Safety	Staying Safe	Safety and contentment
Belongingness	Enjoying and Achieving	Acceptance and opportunity
Esteem	Making a Positive Contribution	Valued and respected
Self-Actualisation	Achieving Economic Well Being	Well being and fulfilment

The Sabotage o

f the Hierarchy of Needs for Neurodiverse People © Jo Todd 2007

Hierarchy of Needs

Physiological Influences

Due to Neuro Developmental differences and acquired differences, people with Neurodiverse profiles are often vulnerable in relation to physiological milestones. A few differences are explained below.

Dyslexia is recognised as having differences in the way the brain processes information, e.g. in the Cerebellum, in the processing of auditory information - resulting in phonological difficulties and auditory memory and in differences in the magno-cellular structure of the retina which affects visual processing. These differences impact on the way a dyslexic person interprets the environment, which may result in literacy difficulties, processing speeds, memory differences etc.

There are also differences in the structure of the Autistic brain. The anatomical differences, which characterise the brains of people with autism, affect the way information is processed particularly in relation to communication. The brain developmental differences affect motor development for those with dyspraxia. Attention focus and concentration is effected for those with attention differences and the way the brain processes number for those with dyscalculia.

Physiological differences may impact on interaction with the environment in relation to living, going on public transport and successfully managing in a work environment. Sensory sensitivity is an issue for many people with Dyspraxia and those on the Autistic spectrum. Immunity and food intolerance are also issues that often arise for those who are Neurodiverse. Physiological differences may cause stress and anxiety and impact on success in education, employment and social interaction.

The physiological development of the Neurodiverse has profound effect on the social adjustments that are required for a fulfilled and healthy lifestyle.

Recognition of the specific difficulties and understanding of the appropriate adjustments is fundamentally important at this most basic level - the adjustments are often simple inexpensive and easily implemented. Without them the individual is excluded, or severely disadvantaged.

Safety and Contentment

In our complex society the thresholds for feeling safe are different when you are Neurodiverse. Navigation through life requires a variety of different approaches - in a literacy-based society not being able to read impacts on countless things automatic readers take for granted. If because of motor difficulties you don’t feel safe on steps, using escalators or climbing onto buses or trains, then travel is limited. It is hard to feel safe if you cannot read facial expression, understand gesture or interpret the nuances of language when people are communicating in a confusing way. Managing money, debt and time is precarious for someone with dyscalculia.

Neurodiverse people are often the victims of harassment and bullying both directly and implicitly in the way that they are viewed by society –feeling safe is something they have not enjoyed in the classroom, playground, in the street or in any public place – even unsympathetic on inappropriate home environments may challenge safety.

Yet explaining this to others often causes isolation because these issues are not experienced or understood by the majority. Perhaps the most profound effect of Neurodiversity is Sensory Sensitivity (see Appendix 4) where noise, light, temperature, crowds can create overload. Feeling uncomfortable or overloaded by things that others cope with easily is isolating. Difficulty interpreting the environment is not confined to those people who may be perceived as having learning disabilities or mental health issues. The Neurodiverse also experience it because of physiological differences in the way they process the environment - including the basic issues associated with light, noise, temperature and even proximity to others.

These differences cut across intellectual ability. So a brilliant mathematician may not be able to do any maths if they are in environment where there is sensory overload e.g. where they are exposed to peripheral or auditory distraction. A competent archivist may find it impossible to integrate with colleagues in a staff-room, have coffee breaks with a group or go on Christmas Lunches with his team - so can’t contribute in the work place. Both these cases are based on real situations where each issue was easily solved with appropriate adjustments. The starting point is understanding that sensory sensitivity is part of the disability and once understood recognising the need for a solution.

At the most basic level the criminal justice system is there to protect the community, officially helping to ensure people feel safe. Yet a lack of understanding of Neurodiversity issues amongst the police, judicial systems and in the prison service bar many of the Neurodiverse community from feeling the protection and safety the law is supposed to provide.

The DDA now extends to the police force and human resource departments in the police service they are taking better account of the Neurodiversity amongst their workforce. However understanding lags behind in the provision of service to the Neurodiverse in the community.

Acceptance and Opportunity

The feeling of belongingness is an important part of man’s gregarious profile, yet 74% of disabled people do not feel they are listened to. Contributing to society gives the opportunity to feel a sense of belonging, yet only 6% of disabled people are formal volunteers. Only half of disabled people are in paid work and people with disability often stay in low paid work without opportunity for progression. Neurodiverse people often feel marginalised and unaccepted by the host society consequently they find themselves living on the periphery of society; this is society’s loss. Neurodiverse people have lots to contribute, if given the opportunity to belong on their terms, if not the result is often alienation and sometimes mental health issues.

Lack of acceptance often starts in an education system that does not understand the cognitive differences of the Neurodiverse. The focus is often on whether an individual has reached a learning goal rather than why they have not.

Even if there is academic success, entry to the world of work may be jeopardised at the recruitment and interview stage for the Neurodiverse. This often results in getting jobs below the level of Neurotypicals with the equivalent academic qualifications.

Improved self-understanding and self-advocacy to a listening and informed employer would help; yet often Neurodiverse people are not good self-advocates. They have not been given the opportunity to understand and lack insight into why they can’t navigate their way through a society they feel alienated from, because they have not had appropriate assessment or explanation. Assessment reports are rarely framed in the best way for the assessed to understand.

In the workplace they are often measured by a set of criteria that does not take account of their Neurodiverse profile. Appraisal frameworks and core competencies provide unnavigable demands, e.g. fulfilling the core competencies of communication skills or knowledge sharing requires understanding and appropriate adjustment if an individual with Neurodiversity is to fulfil the employer’s requirement.

Not belonging or feeling a part of the host community may result in feeling alienated, which may result in joining fringe groups, sometimes even deviant groups where a different criteria of belongingness is easier to achieve.

Valued and Respected

If an individual is not valued and respected in a community the alienation will often necessitate an existence based on survival. Marginalisation often results in deviancy or the creation of sub groups where the framework of acceptance and value are distorted from the higher aims of the host society.

In our complex and rich society self-esteem is often measured against how we are valued and respected by others. The most basic of Human Rights is the dignity of being different and yet being part of a society where you are valued and respected within it. The voice of Neurodiversity is often lost because of the majority’s evaluating judgment against their profiles of incongruity and disparity. It is only when the profile is recognised and understood that the Social Model of disability can be applied. In this way we can all enjoy the same Human Rights.

“An equal society protects and promotes equal, real freedom and substantive opportunity to live in the ways people value and would choose, so that everyone can flourish.

An equal society recognises people’s different needs, situations and goals, and removes the barriers that limit what people can do and can be.’’

Fairness and Freedom: The Final Report of the Equalities Review 2007

Well–Being and Fulfilment

Well-being and fulfilment is surely the spirit of the desired outcome of the Equalities Act for all citizens - what most parents desire for their children.

Throughout history some people with Neurodiverse profiles have contributed at every level in our society, the individual who does not run with the herd is often the different thinker who redirects the herd in positive directions. The use of the potential of each person leads directly to fulfilment. Contribution is limited if society does not utilise and recognise the unique talents.

Equality for Neurodiverse people is not making the Neurodiverse the same as the majority, instead it is giving them the flexibility to be able to contribute, grow and use their strengths by acknowledging the differences of the Neurodiverse profile,

The DRC priorities related to the Neurodiverse

9 Priorities for a New Agenda

We have based the priorities on the DRC’s overall disability agenda published in February 2007. While the agenda takes account of the issues facing different groups of disabled people, we have drawn together some initial priorities under each section for people with neurodiversity.

1. Promoting a culture of equality and human rights.

• The CEHR should continue to support contribution from the neurodiversity group by giving them practical support with both finance and venues, thus benefiting from a conduit of real life experience from the group to the commissioners.

• The CEHR need to promote avenues into other organisations to ensure the voice of neurodiversity is better heard and understood. The CEHR should encourage awareness, training and equipment to the Disability Discrimination Act across the whole of society.

• In some cultural and religious groups discrimination occurs against the Neurodiverse in their own communities, particularly to women.

• The CEHR should encourage charities to work towards the majority of representatives of the charity having the disability the charity represents. This policy should be extended to the charities’ employees - 74% of disabled youngsters do not believe government listens to them, yet it listens to the charities.

2. Bringing an end to child poverty

• The CEHR should promote information in a variety of formats to provide better access and understanding of availability of help and support.

• Unemployment rates for the Neurodiverse keep families locked into poverty. The CEHR should encourage more flexibility for part time working and training while benefits are being claimed.

• Not being in employment, education or training for 6 months or more between the ages of 16 and 18 is the single most powerful predictor of unemployment. The CEHR should commit to better assessment and screening for neurodiversity in this vulnerable group.

• The CEHR should raise awareness and promote better support for parents of children with neurodiversity to help develop the independence and interaction of their offspring within the community.

• Many Neurodiverse conditions are hereditary vulnerable families where one or member of the family are Neurodiverse should have extra support when appropriate.

• At present elderly parents, who often never have any help are still caring for their Neurodiverse adult offspring without support.

3. Increasing life chances through learning and skills

• It is vital that the CEHR put pressure on government for better assessment and training to empower individuals to learn to strength by understanding their cognitive profile. This is not only in education, but also for gaining skills in the workplace.

• The CEHR should encourage government not just to focus on an agenda of basic skills, but also life and social interaction skills. Many people with neurodiversity are marginalised because of difficulty with life skills and basic skills; erosion of confidence and self-esteem prevents them from moving forward.

• The CEHR needs to promote better understanding for an appropriate learning and working environment. The correct physical environment is often vital for those with sensory sensitivity, e.g. lighting, noise, proximity to others, open plan offices may all impact on learning or working.

• The CEHR needs to encourage employers to be more flexible about job description and allocation of tasks so that Neurodiverse people can work to strength. This may involve job carving, training individuals one-to-one, work buddies and mentors to help develop skills and a slower pace of learning new roles. It would be useful if probationary periods for disabled people could be doubled if unsatisfactory at first.

4. Ending poverty and widening employment opportunity

• The CEHR should encourage employers, occupational health providers and unions to have better training on neurodiversity. Attitudes to people with neurodiversity can often be unhelpful and patronising stifling the individual’s growth and development.

• The CEHR should encourage universities to help students with neurodiversity in their transition to the workplace. Graduates are often encouraged to develop competence in individual performance and do not have the skills to be team players. The adjustments provided for academic equality are often not appropriate for the workplace.

• The CEHR should encourage employers to provide every opportunity for Neurodiverse employees to have access to training to enable them to access better jobs.

• The CEHR should encourage employers to ensure that competency frameworks and appraisal systems have the flexibility to accommodate those people who have Neurodiverse profiles, e.g. an individual with Asperger’s Syndrome will find team working and knowledge sharing difficult.

5. Increasing democratic participation and active citizenship

• The CEHR needs to encourage equal access to justice through the Criminal Justice System. Advocates at every stage of the legal process need to understand the Neurodiverse profile.

• The CEHR needs to encourage General Practitioners to gain better understanding of the needs of their Neurodiverse patients. Difficulties with communication and time pressure often mean that the Neurodiverse patient is unable to communicate effectively with their doctor.

• The CEHR needs to highlight the difficulties that many Neurodiverse people have in using dentist’s services due to sensory sensitivity. Funding should be made available to ensure appropriate adjustments can be made to help handle their fears.

• The CEHR should encourage the government to promote better access to the views and needs of the Neurodiverse community. Consultation is often made about mobility issues by transport providers and other support services. However the needs of Neurodiverse people in terms of accessing information, dealing with crowds, sensory sensitivity issues are seldom considered. This often means that people with neurodiversity stay on the fringes of society, not using facilities that others take for granted.

6. Developing a social care system fit for the future

• The CEHR should promote the development of more sheltered accommodation for people with neurodiversity. Many Neurodiverse individuals with erratic profiles find it difficult to manage alone and yet do not fulfil the criteria for sheltered accommodation. Therefore they do not have the choice of living either independently or with support.

• The CEHR should promote independent trained advocates to work with individual Neurodiverse people to help them navigate their way through the system. Allocation of a named person should be accessible for all questions.

• The CEHR should formally support the DRC’s position that Neurodiverse people should enjoy the same Human Rights as others by having a voice and being heard and enjoying economic and social well being.

• At present support in the home, garden, using transport and interacting with the community is only given by social services to those they consider have extreme difficulty. Yet support at this level for many Neurodiverse people would enable them to contribute to the workforce. Some have the capacity to do highly skilled work, but do not have the capacity to manage day to day living.

7. Tackling health inequalities

• Responsibility for neurodiversity is often a shuttlecock between health and education providers. Assessment is often available to access further help through private assessment by psychiatrists, psychologists, occupational health etc. The CEHR should put pressure on government to allocate cheaper and more accessible screening and testing of neurodiversity.

• The CEHR should encourage better interdisciplinary communication between agencies to ensure that when people have an overlay of conditions, appropriate help is given for each aspect of their profile, e.g. they get support for mental health issues and dyspraxic difficulties.

• It is important that the CEHR understands the difficulties many Neurodiverse people have with intolerances to food and medicines. Supporting Neurodiverse people to encourage pharmaceutical companies to remove the addition of gluten and milk products in food, drugs and medicine and even elsewhere should be standard.

• Accessing directions on medications is hard for many Neurodiverse people, as is taking regular medication. Provision of free reminders or alarms by the health services would ensure appropriate medication is taken regularly.

8. Meeting the future housing challenge

• The CEHR should encourage better understanding of sensory sensitivity in all building designs, e.g. thin walls make noise intolerable for many Neurodiverse individuals. Sensor activated lighting can exacerbate visual-stress, migraines and anxiety if inappropriately placed near people’s homes. (Appendix 4)

• The CEHR should be aware that Neurodiverse people need choice on where they live. Integration into society is often about being unable to manage day to day living. Therefore different levels of support should be available to create independent living.

• The CEHR should encourage Local Authorities to be more aware of the needs of the Neurodiverse community and monitor that the provision they offer is commensurate with need.

• The CEHR should make Government aware of how many people with Neurodiverse profiles end up on the street because they are homeless. They often have complex profiles that have not been fully supported, investigated or understood by any agency, which results in their existence on the fringes of society.

9. Building stronger, safer communities

• The spiky profile of the Neurodiverse means that when criteria of need are being assessed by Social Services individuals fall through the loophole because of apparent areas of ability. There is little understanding that because of the areas of difficulty, the areas of ability are not utilised by society. A more informed understanding of Neurodiversity should enable the CEHR to encourage local Authorities to be more flexible in their assessment of need and allocation of help.

• Many Neuro-developmental conditions are genetic. Consequently families of people with Neurodiverse profiles are often tied into a loop of deprivation and end up in housing in “sink” areas. The CEHR must encourage local Authorities to avoid cluster communities of deprivation and provide a less superficial analysis of need for families where the complexity of Neurodiverse profiles keeps them trapped.

• The CEHR should encourage better training for the Police on Neurodiversity especially to Officers responsible for Juvenile and Domestic crime to ensure appropriate reasonable adjustments are made.

• The CEHR should encourage the police to support Neurodiverse people who are abused and give them the protection of the Law.

• The differences in carrying out daily tasks creates a sense of otherness which reduces people’s sense of belonging

Appendix 1 DRC Manifesto on behalf of people in the

Neurodiverse community

It has been estimated that there are 1 in 10 disabled people in Britain with significant conditions within the Neurodiverse spectrum. These include those with ADHD, Asperger’s Syndrome, Developmental Dyspraxia, Dyslexia, Tourette’s Syndrome and other related conditions.

It has been suggested that 80% of these individuals have an overlay of more than one condition.

This community frequently faces severe discrimination and disadvantage, both deliberate and inadvertent.

Very often the nature of the individuals’ conditions and the difficulties they face are not immediately evident to or understood by other people, including those responsible for delivering public and other services.

The time has come to tackle and end the discrimination and disadvantage involved. This community is entitled to the same opportunities as other citizens and to the structures, services and support, which will bring this about. In turn, the community will seek to make its full contribution as active citizens.

The community is covered by the rights and obligations prescribed by the Disability Discrimination Act, and legal cases have already been successfully pursued in respect of them.

Significant changes are required in the way society organises itself, and these will bring about major gains in terms of justice, participation and effective use of public and other resources.

In particular, major improvements are needed in:

• Correcting stereotypes

• Increasing awareness and understanding among the public at large and the providers of services, e.g. social care and benefit systems

• Expert and standardised diagnosis and identification of the best forms of support and provision

• Welcoming and responding to diversity

• Understanding of the different profiles within the umbrella term of neurodiversity

• Boosting independent living and social involvement

• Providing a trained advocacy service

Action is needed on tailoring the system on a wide front to ensure social participation. In particular in:

• Education

• Employment

• The Justice System

• Health, social, care and psychiatric services

• Housing

• Transport

• Understanding of environmental needs

• Society as a whole

• Portrayal in the media and more widely

• Across all areas of the society

This action must be taken forward at national, European and international levels.

Many people with Neurodiverse conditions have exceptional skills and talents that are being underused. This group is committed to these skills being better appreciated and utilised within the host society.

The ND group is very willing to work with the public, private and voluntary sectors to bring about the change that is needed, as well as the organisations that are concerned directly with the needs and interests of Neurodiverse and autistic people.

In partnership with the other key players – ND individuals and their organisations, service providers and employers, Government, Parliament and public bodies - the Disability Rights Commission and its new group on Neurodiversity will be driving ahead for progress on these issues in their own right as well as integrating them into its other activities and programmes.

Appendix 2

:

Aileen Quinton

’

s

RELEASING EXCELLENCE IN POLICING

(

Featuring the Releasing Excellence Ability Model and

Philosophy)

Summary

This discussion document introduces the opportunity for the Police Service to take a lead in releasing the excellence of all our people and thus help us to become the employer of choice for people of a wide range of abilities. The use of the word ‘releasing’ is deliberately used to make the point that some of this excellence is just looking for half a chance to escape. The many issues that can affect those with disabilities in the Police Family include the problem that policy/procedure, physical environments, job specifications etc. are designed around the needs of those without disabilities. This includes the very procedures that are meant to deal with the difficulties that may arise from this. For some, (perhaps many), disabled members of the workforce, the organisation is much more disabling than their actual conditions. Often much more time effort and money is put into resisting treating disabled people properly than would be needed to fully accommodate them and their conditions.

A lot of these problems result from the skills of those with disabilities not being properly used. We need to make the Police Service the soundest possible investment for public money by making the best of all of our staff. The current method of developing job specifications and matching these to service delivery and to people has its drawbacks. The danger is that the job specification can become more important than the jobs that actually need to be carried out, or the skills available to us. They can end up being shoehorned into fitting the job specification. As regards disability, the tasks grouped together in the job are often based on what is expected from non-disabled people (or not yet disabled). They often fail to deal with the difficulties and needs of disabled people, but also what can often be their unusual strengths.

Version 2c 1/6/05 Aileen Quinton 29 For instance many disabled people have had develop their problem solving skills to a higher level than normal just to survive in a world not designed for them. A focus on omni competency, where everyone is expected to carry out a wide range of tasks, in a particular way can put those with disabilities at an unnecessary disadvantage.

Very simply the Releasing Excellence concept is to identify those activities necessary to deliver high quality policing and have each member of the workforce spending as much time as possible working on those that they are actually good at, instead of agonising over what they are poor at and often have no interest in. Releasing Excellence changes the emphasis on development, including training, from weakness to strengths. Weaknesses would only be considered in terms of how to stop them being a barrier to using strengths. It is important to those with disabilities to have the focus on strengths or potential strengths and to develop them, but it also makes sense for everyone. It is basically about making better use of human resources across the board.

This idea also takes us away from the notion that everyone has to be good at lots of things. It allows for those with disabilities and indeed those with none, who have skills which are unusual and/or developed to a higher than expected degree to use them to help deliver high quality policing, whilst still allowing those who work best with a wide range of responsibilities to continue to operate in this way.

Releasing Excellence can be explored on many levels as it deals with very basic, yet corporate level questions of how we define our job specifications and national forum would be a means of dealing with the issues at the strategic level and sharing best practice. However, individuals and their managers can also consider the ideas, even if just to try and identify key strengths and to look for innovative ways to develop them further. It is a win-win-win situation for taxpayers, the general public and for all employees to have the workforce focusing on policing activities that they are actually good at.

Version 2c 1/6/05 Aileen Quinton 30

Table of Contents

1. BACKGROUND AND PURPOSE 32

2. SOME DISABILITY ISSUES 32

3. GENERIC ISSUES 34

4. CURRENT SITUATION RE UTILISING WORKFORCE 34

5. DISABILITY AWARENESS AND ABILITY DEFICIT 35

   1. What Disability Awareness Isn’t 35

   2. Ability Deficit in Strategic/Policy Development/Decision Making 36 5.3 ‘Reasonable Adjustment’ for an Ability Deficit 36 6 WIDER DIVERSITY IMPLICATIONS OF ABILITY PROFILES 37

1. Culture and Life Experience 37

2. Disability Ability 37

3. Expecting More 38

4. General 51

5. The Good News 51

6. Releasing Excellence Forum 51

7. Piloting the Concept within a Force 52 7 BENEFITS OF HARNESSING THE SKILLS OF DISABLED PEOPLE

AS AN INTEGRAL PART OF A STRENGTHS–BASED ORGANISATION 52

1. For disabled staff 52

2. For not yet-disabled staff 53

3. For taxpayers and those who live or work in the UK 53

Releasing Excellence (Insert)

RELEASING EXCELLENCE ABILITY MODEL AND PHILOSOPHY 39

Mission 40

Ability Model 40

Philosophy of Maximising Effectiveness 40

GENERAL IMPLICATIONS 41

Reality Check 41

Illustration of Omni-competence Philosophy 41

Advantages of Flexibility in Job Specification 41

IMPLICATIONS FOR DISABILITY 42

Releasing Excellence in Policing

(Featuring the Releasing Excellence Ability Model and Philosophy)

Background and Purpose

This document explores some of the issues of people with disability, links them to generic Human Resources issues and proposes an over arching philosophy for harnessing the best of the potential in the entire workforce, along with a suggestion for progressing this, starting with a specific focus on those with disabilities. The use of the word ‘releasing’ is deliberately used to convey that some of this excellence is just looking for half a chance to manifest itself. This is based on a document prepared for the Disabled Staff Association (DSA) of the Metropolitan

Police Service (MPS). It is not based on knowledge of the realities of disability in any other Police Force and it is peppered with personal opinion.

N.B. As there can be confusion about the use of the word “job”, “role” and “task” with a tendency for them to be used interchangeably, the following definitions apply:-

• “Job” is specifically used to define the entirety of what one person is expected to do,

i.e. the thing that would be in the papers to recruit to and most people will be doing only one job.

• “Role” is a responsibility that a person may have within that job, e.g. line manger, custody sergeant, H&S lead for the BOCU, FLO.. Most people will be performing more than one role.

• “Task” is an element of what someone has to do to perform their roles. Tasks generally end and are often repeated, e.g. patrol a certain street, go and arrest someone, take the minutes at a meeting, chair a discipline board.

Some Disability Issues

The following are a just a selection of the many issues affecting those with disabilities in the

MPS. The degree of resonance these will have with those with disabilities in the national Police Family will vary from Force to Force and indeed within each Force. At the very least they should serve as a ‘what to avoid’ list, not so much ‘is a problem’ as ‘can be a problem’. Although the recently published Morris Inquiry survey of the MPS workforce, paints a stark picture regarding dissatisfaction amongst those with disabilities, there are, even within the

MPS, examples of good practice and of enlightened managers.

• policy/procedure, physical environments, job specifications etc. are designed around the features of the statistical norms, i.e. those without disabilities. This includes the very procedures that are meant to deal with the difficulties that may arise from this.

• for some, (perhaps many), disabled people, the organisation is much more disabling than their actual conditions.

• low esteem can be a by-product of a disability and how you are treated. This can make it difficult to be assertive enough to deal with taking action against bullying, unfair treatment etc.

• there can be a fear of being squeezed out. Many disabled people can feel that they are already on thin ice and so do not want to ‘make a fuss’.

• there appears little understanding or awareness of stress related conditions, including those where the stress, and possible depression, is a result of the inadequacies of the organisation, e.g. failure to make reasonable adjustments.

• the suffering in isolation that some disabled people do does not manifest in Management Information or Performance Indicators.

• one of the terms used in considering disability is 'adjustment'. This can sound as if we are being done a favour. Sighted people need windows and lighting to be provided (what are the cost implications of that?), non-sighted don’t; non wheelchair users need chairs to be provided. Are lighting and chairs ‘adjustments’? The terminology is not the fault of the Police Service but it does no harm to challenge the implications.

• some disabilities are less obvious than others and some people may not know that they have a disability or that their condition fits the definition.

• when a member of the police family becomes disabled, they may still have a wealth of skill and knowledge to be harnessed, but may no longer be able to perform the full range of tasks their job requires

• some disabled people may have a lack of trust in how they will be perceived and treated if they disclose the nature of their disability.

• it would appear that too many disabled staff are stuck in situations where they have no real job to do.

• even for those with disabilities who have found a suitable job, promotion prospects can be unnecessarily limited.

• for some, their disability may mean that they struggle to be productive in their present grade, with a higher grade being more suitable, but their current difficulties make promotion unlikely. (e.g. quoting ‘recent operational experience’ stated as a blanket requirement, when it is not necessary to be effective at the more senior rank/grade)

• some token disabled people are ‘wheeled out’ (quite literally) for photo opportunities, with the interest in maximising their potential going little deeper, or not transferring to other disabled people.

• some people can be disabled/disadvantaged by virtue of their talents, in that they are so unusual, and though of potential benefit to the organisation, it is not geared up to recognise and develop them. “In the land of the blind the one eyed man is disabled.”

• there are some managers, at all levels, who appear to have an attitude of ‘how can we do just enough to comply with the DDA?’, or worse - ‘how can we do just enough to make it hard to prove we are not complying with the DDA?’ and ‘what can we get away with?’

• often much more time effort and money is put into resisting treating disabled people properly than would be needed to fully accommodate them and their conditions.

• mindsets that needs of disabled people in employment are always diametrically opposite to effective policing delivery and where ‘a balance’ needs to be struck, fails to recognise that, in the round, opening up real employment possibilities to those with disabilities is good hard nosed business sense.

Generic Issues

Some of the issues affecting those with disabilities are just specific examples of a more general malaise.

• bullying is not restricted to those with disabilities. However they can be easy targets. Being bullied can lead to the disability of depression.

• in too many cases, managers and decision makers appear to operate on a basis that fairness and decency are irrelevant. The mindset that it does not matter what is right or wrong, only what you can get away with, is that of the criminal and it ill behoves the Police to operate on the same level.

• the assumption that good (or even non damaging) line management happens automatically, has no universal validity.

• there are no safeguards for picking up on the damage done by bad management and/or bad policy, especially if it is such as to undermine the confidence of employees and such make it virtually impossible for them to cope with any procedure for resolving their grievances. It is not a new concept that managers can be the biggest barriers to well-being and effective performance of their staff. There are too many people who should not be inflicted on fellow human souls in this manner, but who are forced, sometimes reluctantly, into this position as the only way to ‘advance’

• It may be that for many or most employees, they do not fare badly if the line manager is not particularly good. They are sufficiently empowered to be able to manage themselves and progress their own career despite this handicap. For others with specific requirements, including disability and other unusual ability profiles, there may need to be a higher level of ability needed to manage them.

• There may be efforts to steer people to jobs where their skills have the best fit. However, within a specified job, the focus of development in many organisations, whether disabled or not yet disabled, appears to be on weakness not on strengths. The ‘one size fits all’ silo thinking disadvantages many people. It may just have a much starker impact on those with disabilities.

Current Situation re Utilising Workforce

There are a set of responsibilities which need to be carried out and a skills set, neither which, it would appear are explicitly listed. We have a set of jobs that are used to make the match. In general, these jobs are identified and specified. The assumptions behind the grouping of responsibilities into jobs are not valid across the board. For example, responsibilities for strategic problem diagnosis and high level analytical or creative thinking are matched with management responsibilities. These are different abilities and the assumption that they coexist falls down with some people. Management is not leadership and should not be the only vehicle for seniority and the chance to influence at a strategic level. The abilities of some strategic thinkers or policing practitioners (e.g. skilled detectives) may be wasted in making them managers. There may also be employees trapped in the bottom rungs of the hierarchy, who are excellent facilitators for other peoples’ achievements, but are not making enough of a mark in their current job to be considered for the ‘promotion’ that could bring some of this into play.

The danger of this emphasis, on such a system of jobs, is that they can become more important than the skills set or of the responsibilities that actually need to be carried out. People’s skills can end up being shoehorned into these jobs and the responsibilities are defined in such a way as to fit with currently available job specifications. We need to develop a system for matching the abilities/skills profiles to necessary activities, where the system facilitates the match as opposed to constraining it.

Arguably the current system tends to tolerate incompetence, encourage mediocrity and suppress excellence in us all. This is not to say that the Police Service is any worse than other organisations; but isn’t what we strive to do important enough for us to want to be and deliver the best we can?

Disability Awareness and Ability Deficit

What Disability Awareness Isn’t

Advocating Disability awareness and the full integration of those with disabilities into the workforce, is not about advocating that people be allowed to carry out jobs that they are simply not capable of doing, regardless of what reasonable adjustments can be made, particularly if they are actually dangerous.

Ability Deficit in Strategic/Policy Development/Decision Making

Being capable of carrying out the roles in your job has to work both ways. If there are people in decision-making jobs (local or strategic), who have not got a disability, in the generally accepted sense, but who make flawed decisions, then this should not be tolerated. Their problem may be because of relative intellectual disadvantage or lack of imagination and so they are not capable of grasping the implications of their decisions.

All of us, disabled or not (yet) disabled can be disadvantaged and our effectiveness compromised by policy and working practices development which has been cobbled together in a knee-jerk fashion, (or even cobbled together in a leisurely fashion), characterised by a failure to properly explore the implications or to identify and challenge the underlying assumptions. Then when situations arise which are not adequately catered for arise, these are either ignored or something bolted on. In most cases, exceptions are more usefully thought of as specific examples of a more generic reality. We should not bolt on something for people with disabilities; just make policies and procedures work for people, a group of which we happen to form a part. For many disabled people, their disability is enough of a challenge; they do not need to have to suffer from other people’s ability deficit as well.

It also needs to matter if a policy stops us doing what is right and what is effective.

Development and review of policy and working practices, as well as people management are too important to adopt the attitude of Winnie the Pooh’s friend Rabbit, i.e. “you have to respect someone who can spell Tuesday, even if they can’t spell it right”.

When challenges to existing practices or suggestions for improvements are made to policing we need to ensure that responses like ‘we cannot……’ are a reflection on the inherent feasibility and desirability of the proposal at hand and not a reflection on the competence or willingness of those responsible for assessing the implications of both action and inaction and for implementing any desired option. In other words when the Police Service decides not to do something it should be because it is not the right thing to do, not because we are not willing or capable of doing it.

‘Reasonable Adjustment’ for an Ability Deficit

Although those not (yet) disabled with an ability deficit in relation to their current job, are not covered by the DDA, perhaps ‘reasonable adjustment’ for these people may mean that their decisions need to be ratified through another forum, which can compensate for the shortfall. In some cases the problem may just be lack of experience or knowledge, which can be easily rectified. You can conquer ignorance with information; stupidity is a much harder nut to conquer, as is complacency and indifference to quality.

A failure to think strategically or conceptually in a senior or policy/strategy development role is not necessarily a problem. The problem would be to fail to recognise the need and to harness this in others. As a last resort, the person should be moved to a job that better suits their abilities and where, for example, blinkered thinking is not a barrier to their usefulness.

Wider Diversity Implications of Ability Profiles

Culture and Life Experience

This is very speculative, but who knows what part, say, culture plays in establishing an individual’s ability profile? Repeated rituals may have a major impact on the pathways laid down in our brain as it develops, in early years. What skills are honed by the experience of bringing up small children? There are also genetic links to abilities.

This is absolutely not an argument for creating new stereotypes, or reinforcing old ones; rather it is an argument for being open to a wider base of skills and their potential to contribute to policing, without presuming any individual has or does not have a skill based on belonging to any specific group(s). For example, the usefulness of negotiating, refereeing, motivating involved in dealing with young children, can be applied within policing and should be valued, but we should not assume all primary carers for children have them or that they are the only ones who do.

Disability Ability

Looking specifically at disability, we are in the dark ages with regard to awareness of developmental neuro-divergent conditions, such as dyspraxia, ADD, Aspergers Syndrome. (Dyslexia is probably the one of this family that most people are most familiar with). These conditions affect about ten percent of the population to a significant degree (considered a very conservative estimate). Painting with a very broad brush, these people tend to have major difficulties with everyday tasks, e.g personal organisation, note-taking, but have highly developed skills in strategic, creative ‘out of the box’ thinking. Neuro-divergent people tend to have trouble being mediocre as they are either very good to spectacularly good at things or spectacularly useless at them. (The following quote is often made in neuro-divergent circles that ‘if the world was full of only neuro-typicals [i.e, those without the related conditions], then we would all still be living in caves and no-one would have invented the wheel’. In fairness it should be added ‘and if the world was full of only neuro-divergents, we would probably still all be living in caves, we would have invented the wheel and a lot of other things besides, but would lack the skills to implement them in the real world’. Of course, in reality, things are not that stark. Not all neuro-typicals are devoid of imagination and creativity and not all neurodivergents are hopelessly disorganised). The answer to this is neuro-diversity, i.e. having a system where we can allows all of us to map our strengths against activities to deliver high quality policing.

If we take Autistic savants, those people, who, for most aspects of life, are profoundly disabled and not capable of independent living, but have one area of pure genius that leaves most of the rest of us in awe, (as in the film Rainman). Is it not possible that there are savants who could, say, look at a non too clear old photograph and spot the individual in a crowd, disguised or not?

For many disabilities, having had to function in a world not designed to accommodate them often means that the individuals have had to hone their problem solving skills to get around (literally and metaphorically) the many obstacles in their way. The determination not to be beaten by an unaccommodating world is another common characteristic than can be transferred to tackling other problems. It is perhaps not so much a skill as an enabler, increasing the chances of other skills being used to full effect.

Expecting More

We operate on too low and too narrow an expectation of human potential. It is hard to think of any responsibility more complex, more important and more challenging than policing. We need to be harnessing as much diverse skill and experience as we can get our hands on. Criminal Groups are probably more open to using skills imaginatively than we are. (Crime is an equal opportunity employer!)

RELEASING EXCELLENCE

ABILITY MODEL AND PHILOSOPHY

Mission - To Release Excellence in Policing

We should seek to be deservedly recognised as a centre of excellence for realising the potential of all Police personnel so as to obtain and maintain the optimum match between this, and the responsibilities and activities to maximise police effectiveness (not forgetting the potential recruitment pool). We need to make the Police Service the soundest possible investment for public money.

Ability Model

This model of ability is based on four main categories of ability for an individual.

Category A (Easy Excellence)

Easy Excellence contains all those generic work related skills that you are or have the potential to be excellent at. All you need to realise this potential, if you haven’t already, is some training, experience, support or equipment. They could be thought of as those things that you cannot help being good at. Excellence comes naturally. They may even be things that you do not even recognise as strengths because you take it for granted and assume that it is natural for everyone.

Category B (Comfortable Competence)

Comfortable Competence contains those skills that you are or have the potential to be, although not excellent, very competent. Again you may need some training, experience, support or equipment.

Category C (Uneasy Underpinning)

Uneasy Underpinning contains those things that you have little or no potential to be good at (or at least not without a disproportionate amount of effort). However, it may be worthwhile to try and improve your effectiveness because this would have a natural synergistic benefit in relation to a Comfortable Competence, or, even better, an Easy Excellence. The term ‘natural’ is used to exclude those things that are artificially grouped by an organisation’s job specification method, e.g. welding thinking skills to management.

Category D (Pointless Purgatory)

Pointless Purgatory contains those things that you have little or no potential to be good at (or at least not without a disproportionate amount of effort) and there is no natural synergy with Easy Excellence or Comfortable Competence and it is not worth worrying about them. If someone was a wheelchair user but could, struggle up the stairs, by clinging on to the railing and hoisting themselves up, we would not make them practice this so that they can shave 5 mins off their time of three hours to get to the required floor. For some people, some aspects of work are just as difficult.

The Model Itself

If the skills, and the associated level of functioning within them, are mapped out in their categories, (A-D), along with the potential in these areas, then this forms the model.

Philosophy of Maximising Effectiveness

What any HR policy should aim to do is to maximise the focus for each member of staff on their Easy Excellence, (primarily), and Comfortable Competence. Development should be focused on these plus Uneasy Underpinning, instead of being focused on weakness (Categories Uneasy Underpinning and Pointless Purgatory), i.e. weakness should only considered, in terms of development, in order that they do not compromise the strengths and not in an effort to promote mediocrity across the board or do overcome the inadequacies of current employment practices. This also impacts on recruitment (moving away from recruiting to job specification to recruiting for skills/potential)

General Implications

Breaking out of the Limited Thinking about Job Specification

Reslicing and Packaging (Pick ‘n Mix)

If an organisation, wedded to the cult of mediocrity/omni-competency, needed equal amounts of ten activities A, B, C, …J and 100 people to carry them out, it might decide to parcel the work up by defining a job which requires equal amounts of each of the activities and try and recruit 100 people to do this. This is an arbitrary a way of spanning the requirement. Another arbitrary way, at the other extreme, would be to specify 10 jobs dedicated to A, 10 dedicated to B, etc.

A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J

Etc 100 times (Each “job” is bordered by the thick black line, Each representation of A, to J equates to one tenth of a full time commitment.)

If we take some potential employees with some relevant skills:-

Tom

He is just about able to do all of them to an only just acceptable standard. He and those like him are in with a chance.

Dick ………

He can do E to J very well. He has a disability that means that he needs some equipment in order to do C and D well and B reasonably OK. A is impossible for him. He and those like him are probably in with a chance, because of the DDA. The equipment and tailoring the job so that he doesn’t have to do any A, could be considered as reasonable adjustments.

Harriet

She also has a disability. She is Neuro-Divergent (ND - Aspergers and Dyspraxia) and, for her, that means that she cannot do F to J at all, and D and E only with great difficulties and cause her great stress. A feature of her disability is that she is exceptional at A and B. She also could be usefully developed to take on C, although not with out some difficulty. She has little chance of getting one of the “jobs”, even if she thought it worthwhile applying for it. She could be excluded because she did not come close to fulfilling the requirements for “the job”, even though “the jobs” did not need to be specified in a way that excluded her. There is little meaningful recourse from the DDA as that would require an understanding of the discrimination involved in job specification on the part of those

Omar

He has a similar problem to Harriet, in that his skills, although very useful to the organisation and its real requirements, do not fit the specification. He has Dyslexia and ADHD and is brilliant at D and E, but useless at everything else looked for, except B where, with a bit of technology, he could be good.

Shera and Peter have a less dramatic ability profile than Harriet and Omar.

Shera is very good at G to J and can be usefully developed in F, while Peter is very good at F to I and can handle E and J. Again as, Shera can only do half of the job and Peter not much better, they are unlikely to be employed. We do not know if Shera and Peter have a disability and if they have, they may not know and it may even be one as yet uncharted by the medical/scientific profession.

If we break out of the job straightjacket and consider the following:

A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J
A	B	C	D	E	F	G	H	I	J

Allowing for flexibility in defining the job s, as opposed to just adjustment as required by the DDA, we are able to harness the skills of all of the above, including some additional people who can competently span the ten activities. We may not take Tom on, as he is only just able to undertake the activities required and we can afford to be a bit more choosey because we have widened our potential recruitment pool. However, it is to be hoped that Tom will discover his niche.

Of course there could also be an activity K, that if undertaken could boost performance to new heights, but where those setting the standards have no idea could be useful or be could be possible. It is not the fault of the people who have these skills that they are not used. At present there is no meaningful recourse to Harriet and Omar through the DDA, for being excluded from employment from this practice, as that would take an awareness and understanding of the issues of their sort of difference that does not exist at the moment. There is also no meaningful recourse to law for the taxpayer for the misuse of public money involved in not recruiting in a way to get optimum performance.

Case Study (supplied by Key4Learning)

Henry does not suffer from Aspergers Syndrome! He has Aspergers Syndrome. He suffers from a lack of understanding and accommodation of his difference from other people and the systems and frameworks that they establish and expect him to operate within.

He was in a job in part of the Public Sector as an Administrative Assistant (AA), performing a clerical role, giving out mail, filing, checking stationery cupboard, etc. To many people this would be considered an “easy” job but it is the sort of job that is not suited to many Aspergers people; it is full of their Pointless Purgatory. It was extremely stressful for him and those around him and he was moved to be an AA somewhere else. This did not help. He was still not performing satisfactorily and was criticised accordingly. He and his colleagues had to go on a team-building day, which he found it intolerable and this may also have meant that it was not a bundle of laughs for the rest of the team.

His employers did bring in a work mentor and coach and through this Henry’s aptitude for Maths was identified. As it happened, the section where Henry was working were responsible for statistical information and people two grades higher than him had been struggling, putting significant time and effort into one aspect of their work to little avail. The mentor requested that Henry did some of this as-it was more geared to his

skills.

It was difficult to persuade the employer that Henry could be responsible for work outside his job description and which was deemed to be “difficult” when he was failing to do what was “easy” and it took some time to arrange this. It was so counter-intuitive that Henry, who was so weak at clerical tasks, could have such extraordinary mathematical/statistical ability. There was also a great controversy over pay as Henry was doing work two grades above that for which he was employed and at that grade he should have managed others. There were also issues associated with pension. Eventually, two jobs were carved apart to ensure Henry could work to skill. Henry is saving his employer (and as it’s in the Public Sector, us), vast sums because of working to skill instead of losing money because of inappropriate placement. That this was done is greatly to the credit of those in the management and HR roles involved. They could easily have got away with not letting him work to skill as it is unlikely that an Employment Tribunal would have considered failure to let Henry do bits of a job two grades higher than his own when he was under-performing in his own, a breach of the DDA. It is permissible not to give the Henries of this world equality of opportunity.

Reality Check

There are some occasions where there are operational reasons why we need to group skills in a role/job. Actually patrolling probably does require an officer to be multi-skilled with the ability to use these skills simultaneously in quick time. It is not expected that an officer would be incapable of giving chase with the explanation ‘I don’t do chasing, we have to wait for Fred or Jane for that, they are really quick on their feet’. (Although I cannot get the image of a standard issue lasso out of my head.) Also the skills to be considered need to be work related. This philosophy is not advocating that if a member of staff is a whiz at raffia work then this has to be channelled into the fight against crime. Although there is arguably a need to be more open-minded about what constitutes a work related skill than we are used to.

Simple Illustration of Omni-Competence Philosophy

If an organisation needed barking and meowing and took on several dogs and cats to span the requirement, then a system that promotes omni-competency (or omni-mediocrity), would insist that all of them had to be able to both bark and meow to a set standard. Fido would be sent on his meowing course in order to take him from a totally useless meower to just a bad meower. Meanwhile Fluff is being persecuted with a barking requirement, made even more frustrating because she can see what a mess Fido is making of her speciality. ‘Let Fido bark!’

Advantages of Flexibility in Job Specification

Fido may also have other sought after skills. If tail wagging is much prized and this is Fido’s second talent, but there are no specified jobs that combine this with barking, we would again be missing out, (especially if he could do both simultaneously).

Although we do not wish to arbitrarily lump barking and meowing together we should avoid arbitrarily decreeing that they must never be. For the purposes of illustration, Fido is useless at meowing, but supposing we take another from his species, Spot, who uncharacteristically, is a more than competent meower, then it may well be advisable to encourage Spot to develop and use both skills.

It may not always be clear what is in each skill category for any individual. Some Easy Excellence or Comfortable Competence may be masquerading as Pointless Purgatory, but may need some effort to be ‘released’. (Fido may need to try meowing before he can be sure he is no good at it.)

When the focus is on strengths, it tends to raise the standard across the board. Some of this may well be down to improved self-confidence.

For some people, their flexibility and their ability to multi-task is part of their strength and where they give of their best. In this case, stretching them throughout their Comfortable

Competence will also enhance their Easy Excellence.

It may appear that the approach advocated here could really only work for a large organisation which could afford more flexibility to cover all the bases required. However if individuals work for their family firm then they would be used for their strengths and others brought in to pad around them. Although it is not feasible to design a Police Service’s deployment practices exclusively around the skills of any one person or group, it does highlight that the key issue is just how important the organisation considers it is, to use someone’s skills.

Implications for Disability

A strengths focused philosophy is vital for those with disabilities. It is a positive ethos in which to manage disability, but it also has benefits for everyone.

For many disabled people, their Easy Excellence may be unexplored territory. It may also be that their actual level of functioning, even in this category, may be very low. However, all they need is the right equipment and or the right change in the physical environment (including access to the building) and their excellence is released.

The following figures are not real graphs. They are included to illustrate what some example profiles might look like. The skills in each category are in ascending Potential Ability Level order.

Figure 1 - Ability Profile of a Neuro-Typical – Non Disabled, is an illustration of what the ability profile of such a person, i.e. not (yet) disabled, including not having dyslexia, dyspraxia ADD, etc..

Figure 2 – Ability Profile of a Neuro-Typical – Disabled is an illustration of those with a disability that is not related to neuro-divergence. In this contrived example the Potential

Skill Level is the same as in Figure 1, but there is a more marked disparity between

Current and Potential Skill Levels in Figure 2.

Figure 3 – Ability of a Neuro-Divergent is an illustration of an ability profile of someone with a condition such as Dyspraxia, Dyslexia, ADD etc. [but not with any other disability – of course, in reality, you do not get an exemption from all other disabilities if you have one). The difference in this and Figure 1 is that Uneasy Underpinning & Pointless Purgatory are much bigger and will also contain many of the basic skills, but to compensate Easy Excellence is bigger and both Easy Excellence and Comfortable Competence have higher levels of potential. Generally accepted ‘basic’ skills are often to be found in the Uneasy Underpinning & Pointless Purgatory of the neuro-divergent, whilst their Easy Excellence category is often made up of rarer skills.

Figures 1 to 3 have been constructed to show how the profile may be different whilst having equivalent potential overall worth.

For neuro-divergents, a requirement for omni-competence makes it more likely that they are operating in their pointless purgatory most of the time and so have little effort left for releasing their excellence.

Figure 4 – Fido’s Ability Profile is a simplified version of Fido’s ability profile. (Fido is a neuro-typical dog and he is only disabled by the policy based on omni-competence.)

Figure 1 - Ability Profile of a Neuro-Typical – Non Disabled

Relea	sing
Excell	ence
	level

© Aileen Quinton 2004

Figure 3 - Ability Profile of a Neuro-Divergent

Skills

© Aileen Quinton 2004

Figure 4 – Fido’s Ability Profile

© Aileen Quinton 2004

Progressing the Concept

General

We need to find a way of exploring the skills and potential of all our staff and matching that to the activities required to deliver a high quality policing service.

We should be harnessing the best quality academic research, where we can offer the raw material.

Management is important and it should be recognised and developed as a skilled, valued specialism. It should not be assumed that everyone has the potential to be competent at it. It should not be the only route to seniority.

In addition, it may be necessary to have an advanced level of line management re harnessing the talents of those with special needs/unusual skills profile

There is work required to establish some sort of early warning system for damage done by bad line management

The Good News

Without necessarily thinking of it in these terms, some people are operating in a way that fits to some degree with a strength-based philosophy. Many current examples of good practice can be easily shown to be aligning with this philosophy. For example, work done in Forensic Services in the MPS, to establish a system where specialists can rise in seniority, without having to climb a management hierarchy ladder, is Releasing Excellence in action. The MPS Cultural and Communities Resource Unit (CCRU), which draws on the skills and life experience of the workforce, regardless of their current job, to assist with critical incidents, is another example of a movement in this direction. Hopefully later versions of this document will include examples from outside the MPS.

Releasing Excellence Forum

Each and any Force that was interested could make their own arrangements to explore the feasibility. It would be useful to establish a forum to share best practice and to explore generic issues. The usefulness on non-police involvement should be considered. Policing is interesting to many experts and there may be many useful individuals who may wish to be involved at no cost to us. They get the kudos of being involved and contributing to innovation in an organisation that holds the imagination of a lot of the general public.

Piloting the Concept within a Force

Those identified as disabled in the organisation and/or those with unusual potential skills profiles, could be used (with their willingness) to test out these concepts. This would involve, skills matching, line management needs and practical processes for dismantling barriers. The pilot and the project team could also be monitored in terms of team work and whether the best was being made of each persons skills and did the team have all bases covered re skills needed. [This might be done as part of the research mentioned above.] All of this work should be carried out with one eye on its potential for universal applicability.

A key part of this pilot would be to facilitating the match between the skills, experience and potential of people with disabilities and useful work in the Police Service, overcoming the unnecessary organisational barriers (organisational disability).

Even if a Police Force does not embrace the concept at a corporate level, some of the principles can be (and in some cases are already) adopted by local management. Making explicit the importance of strengths development in conversations with your team, including formalising it in annual appraisals and reviews and encouraging staff to explore what might be in their ability categories, particularly their Easy Excellence, would be a useful start, whilst all await corporate enlightenment.

Benefits of Harnessing the Skills of Disabled People as an Integral part of a Strengths–based Organisation

For disabled staff

• along with everyone else, their skills and potential are the key issues, disability could be made irrelevant

• places them as a full part of the workforce

• if it involves everyone, it is more likely to be sustained

• disabled people get to work with, for and over other people working more effectively and efficiently.

• the system does not rely on a declaration of disability. Some disabled people do not trust the organisation with the information that they are disabled, some disabled do not realise that they have a recognised disability and some disabled people may have a condition where the territory has yet to be mapped out (or even reached) by the medical profession

For not yet-disabled staff

• everyone gets to play to their strengths and it is not just a special concession given to those with disabilities.

For taxpayers and those who live or work in the UK

• taxpayers are not having their money wasted by paying people to do things that they have no potential to be good at and having to foot the bill for the associated training.

• improved retention (and associated cost savings)

• reduced sickness bill due to reduced stress

• maximising the percentage of time that the workforce are playing to their strengths would be an important factor in ensuring that the effectiveness of policing in the UK is not compromised.

(Personally speaking I have no wish to pay Fido to meow, pay for his meowing courses, pay his managers to give him a hard time over his meowing performance, to pay him while he is off sick with stress or pay to replace him when he has had enough.)

Appendix 3 DANDA

The Developmental Adult Neurodiversity Association (DANDA) is a charity that is founded and run by people who have dyspraxia, Asperger’s Syndrome, ADHD and related conditions such as dyslexia, dyscalculia and others who share a different way of processing information. DANDA is a charity for adults with neurodiverse conditions. Many of these conditions overlap.

All members of the charity have been ‘labelled’ with different psychological or medical conditions but have together explored their own thinking and working differences and defined and taken ownership of the parameter of their differences in the term Neurodiversity, thus giving an umbrella term to a range of complex processing differences. The members describe neurodiversity as a spectrum of neurological conditions concerning how effective an individual is in processing information. DANDA suggest it affects 20% of the population, yet certain aspects of neurodiversity are little known. The profile is a mixture of abilities and disabilities. Although the term neurodiversity is not a recognised term within the context of the Disability Discrimination Act, many of the conditions under the umbrella term do fall within it.

Appendix 4 Notes on Sensory Sensitivity

Rationale

Individuals with Neurodiversity are often more sensitive to external stimulus and this can often cause distraction. We are becoming more aware of this factor as we understand processing differences more thoroughly. Sensory sensitivity may manifest as auditory or visual sensitivity or, more unusually, sensitivity to smell, touch, temperature or atmosphere. This may cause difficulty in the workplace and require appropriate adjustments to enable the individual to do their job without the distraction of sensory overload.

Auditory Sensitivity – Auditory stress

When we think of an auditory difference we often think of a deficit, but acute sensitivity is a problem for some individuals, not only in an obviously noisy environment, but also with the distraction of intermittent noise in the workplace, particularly the open planned office. For example, sounds of the photocopier, phones or individuals talking in groups. It is apparent that the facility to screen out noise or focus on specific sounds does not work or is unreliable in some individuals.

This is often most evident when people are on the ASD spectrum or have dyslexia and/or dyspraxia, although it is evident that it can be part of other neurodiverse conditions. This auditory sensitivity may result in a lack of concentration or focus, which may be perceived as a Capability Issue or competence issue rather than part of a disability.

The employee who is distracted by others talking or by a noise is required to get on with their work and not look around. For the individual with sensory sensitivity, this is easier said than done and strategies should be explored to help the individual deal with this difficulty.

Typically in the past a child at school may have been sent outside to work on their own and when they return with completed work, the teacher assumes it is the punishment of exclusion that has focused the mind. We advise when training teachers that is often worth exploring with the student whether there is an improvement in performance because of the fact that the student is sent to a quiet environment rather than a noisy classroom where concentration is difficult.

With this knowledge, gained from the classroom, we often suggest in the workplace an adjustment can be to:

• find a quiet place to work

• wear noise-cancelling headphones or those which change external sound into white noise

• listen to music on a Ipod or personal stereo to create an individual cell of defined noise; instrumental music is often less distracting than music with words.

• have sound proof screens to absorb some peripheral sound

If the Auditory distractibility is dealt with, the individual can perform to strength.

In contrast, some individuals with processing differences may have developed an ability to hyper-focus which is their strategy for dealing with extraneous noise; in other words, they ‘cut themselves off’. This can send mixed messages to a line manager or colleagues of rudeness, lack of interest or not bothering. An individual may not respond to questions or retain incidental verbal information are required to do.

Visual Sensitivity – Visual stress

Many people with reading difficulties suffer from a physiological difference, which is related to the way that the brain processes the shapes in the written word (some suggest it could be as much as 20% of the population).

Research is currently underway into the causes and mechanisms of epilepsy, migraines and visual discomfort that suggests a significant evidence that the balance of colours entering the eye influences this data processing.

The resulting visual discomfort can mean an inability to read without either the text blurring or losing one’s place. However it can be more severe, where letters, words and lines ‘bunch’ together, so that syllables, words and sometimes whole phrases are not distinguishable.

Visual sensitivity can often be exacerbated by the glare of bleached white paper particularly in the glare of fluorescent lighting, so using a cream or pastel paper may help alleviate visual stress.

Tinted overlays placed over the text can help. The overlays adjust to the mix of colours entering the eyes. People who are sensitive to colour will then notice a reduction in the symptoms that they have been experiencing (if there are no other ophthalmic problems). The brain seems to be able to process the data more quickly and effectively, allowing a better understanding of the text. If the overlay helps tinted glasses may help.

The idea of tinted overlays is not new. Samuel Pepys, after realising that he could read better through the glass of wine bottles, wore green tinted spectacles.

Changing the background colour on computer screens can affect the ability to access information, yet office software packages often prevent the facility to change colour, which can preclude an individual from accessing material efficiently. It is important to note that tinted over-lays, glasses and computer background may not be successful with the same colour it appears the eyes respond differently and different circumstances require different analysis.

Light sensitivity

Many workplace environments have created bright working environments. For the majority this is preferable to poor lighting. However visual stress can be caused to those who have difficulty in working in artificial light. Modern offices have “intelligent’ lighting that is monitored to change as it grows darker or when a cloud passes overhead. This can be hard for those with neurodiversity who suffer from light sensitivity.

The most useful solution to this difficulty is for the individual to have their own daylight lamp on the desk or to have controlled lighting so they can turn the switch on and off, as they need to.

Seating and lighting can be an issue and an adjustment may be required for the individual to sit near natural light or perhaps out of direct light. It cannot be underestimated how much inappropriate lighting can affect performance for those who are neuro-diverse. Headaches or queasiness are often physical response to visual sensitivity.

Visual Distractibility

The open plan office is often arranged so that desks are in rows or in a block. This creates gangways to different working areas and consequently, people are moving around. The result of this is that individuals are exposed to movement either directly or in their peripheral vision. For the majority this is not an issue, but for others this may cause visual distractibility. Concentration and focus are compromised.

Visual distractibility is often a major difficulty for those with Attention Deficit Disorder, although this is not exclusively a problem for individuals with this condition and can occur across the spectrum of neuro-diversity.

Non-visually stimulating environments are key for those who have difficulty with visual distractibility. One solution may be to have a work station in a corner with a desk facing a wall, preferably with another wall down the side. Screens around the desk can be the answer for others. If an individual has this kind of difficulty, it is important that the adjustment for the disability is managed, but that it does not create a difficulty with social isolation. We encourage a sign placed on the desk to encourage interruption when appropriate, but asking for privacy when focus is required.

In recent years organisations have promoted the idea of “hot-desking”. This has been particularly popular when home working is encouraged and when office space is limited.

The Neuro-diverse may have difficulties with this and we suggest that for many, theirs is a need for appropriate adjustment. For the neuro-diverse with organisational difficulties, hot-desking is an obvious problem. This occurs not only for those with dyslexia and dyspraxia, but often also for those with head injury and mental health problems.

However for those with ASD the actual hot-desking requirement to change place each day and neither to know where you will be sitting nor where everyone else will be sitting, can create great disorientation. There is no physical or visual security. We have been very popular with all staff in situations where we have suggested whole sections should not hot desk as a reasonable adjustment for an individual member of staff. As few human beings seem to like this continual change. However office managers have, more often, needed persuading to agree and understand the benefits as ‘hot desking’ is often driven by an economic agenda.

Sensory Awareness

Research has shown that some individuals in the range of neuro- diversity with developmental delay have retained reflexes from early development.

These retained reflexes may create sensitivities that manifest as unexpected retaliation or abrupt or apparently rude behaviours, yet identification can often result in simple solutions. Retained reflexes are often a feature of ASD and Dyspraxia. Lack of or inappropriate adjustments in the workplace can often escalate negative behaviours. This creates not only individual stress, but often situations that hard to retrieve because of misunderstandings.

Appropriate handling of situations with informed understanding, readjustment and self- knowledge, have provided a successful solution to some of these specific difficulties. Physical changes to the environment and education for the individual, their colleagues and line managers have subsequently resulted in change of attitude and management.

Sensory Sensitivity to Smell

In our experience the smell of certain perfumes, guide dogs, cleaning fluids, “air freshener,” body odours, printers, coffee and other aromas have all created specific issues in the past for individuals within the neuro-diverse population who have acute sensitivity to smell.

In the workplace there have been solutions to all these problems but a disproportionate amount of time and lack of awareness of the sensory sensitivity issues associated with neuro-divesity can create misunderstanding and difficulties disproportionate to the problem.

Some members of this group also have issues associated with personal hygiene. This can manifest as a dislike of hair washing or going for a hair cut. Not washing properly creates personal body odours, but appropriate understanding and appropriate intervention can create routes to simple solutions.

If these issues are not dealt with appropriately social isolation and bullying may occur. Interaction between colleagues becomes tense and the focus is on this problem not the individual’s ability to do a job.

The readjustments required for a particular job become secondary or distorted by the personal judgement issues.

Sensory Sensitivity to Touch

Sensitivity to touch for some individuals has long been recognised as within the Autistic Spectrum. This may manifest in the workplace as sensory sensitivity associated with proximity to others. It is often an issue in an open plan office, not only with how close people sit to each other but also with the movement of people around the individual.

When someone is walking or working behind some individuals with neurodivergent thinking the effect it has on their sensory system cannot be underestimated. Overloading the sensory system distracts, causes loss of concentration and creates apparently irrational stress levels. Seating position, use of screens or quiet work places are usually quick and easy solutions to this issue. The difficulty usually arises because the employer and colleagues do not understand the level of need.

Sensory Sensitivity to Temperature

It is not only those on the neuro-diverse spectrum, but also other disabilities where an individual’s internal temperature gauge creates environmental problems. The levels of response to heat and the cold response to the lack of circulation of air means the individual is unable to focus on work-based issues. The work-based policy at present is often “put up and shut up”.

There can be a dramatic change in performance when an individual has their own self controlled environment,

Due to heating often being centrally controlled, this can be a nightmare to establish in many twenty first century workplaces. Therefore the importance of raising this issue with designers at the planning stage is vital. Jo Todd

2005 © Key4Learning Ltd

NEURO-DIVERSITY: MEETING THE CHALLENGE

CONFERENCE HELD AT THE RADISSON HOTEL MANCHESTER, ON MONDAY 26 MARCH 2007

Report of conference

INDEX PAGE

Page number

Summary, the Conference & this Report 4-5

Section 1: Key Sectors

• Education 6-8

• Employment 8-10

• Health and social care 11

Section 2: Remarks by Guest Speakers

• Janet Taylor 12-16

• Mary Colley 17-19

• Orla Reardon 20-21

• Ben Stone 22-23

• Jean McGealy 24-25

Section 3: Aspects of the Justice System 26-27

Annex 1: Conference programme & participants 28-30

Annex 2: Justice System: some good practice and related

guidance 31-35

CONFERENCE REPORT AND ANNEXES

“NEURO-DIVERSITY – MEETING THE CHALLENGE”

SUMMARY

The conference focused on securing equality and fairness for people in the neuro-diverse community and the autistic spectrum in key sectors of society and the economy. Throughout, the event was strongly based on the involvement and experiences of neurodiverse individuals themselves.

The conference looked in particular at sectors - employment, education, social and health care, and the justice system – that are of special importance to the prospects and rights of ND people. There was a special emphasis on identifying specific areas for action by decision-makers and others in positions of influence.

The conference identified a number of key generic issues and objectives, in particular the pressing need to:

• End the widespread low levels of awareness and understanding of ND, as well as of the range and mix of conditions involved

• Tackle the isolation and lack of integration faced by many ND people, often leading to low self confidence and low self esteem

• Strengthen effective communication with and involvement of ND individuals and their advocates

• Establish a better mix of public policies and allocation of funds, including support arrangements and the elimination of current inefficiencies and discontinuities

• Promote the particular talents of ND people at work and elsewhere, and create environments in which their potential can be realised.

The conference called on all organisations and individuals with a role to play to pursue these objectives in their areas of responsibility. The Disability Rights Commission undertook to publish and promote the conference outcomes, as well as to urge the new Commission for Equality and Human Rights to do likewise and to ensure that its own plans and priorities include a continuing emphasis on neuro-diversity.

THE CONFERENCE AND THIS REPORT

The conference was organised by the Disability Rights Commission in conjunction with members of its Neuro-diversity and Autism Action and Advice Group. The speakers and those attending comprised ND individuals and others with extensive experience of ND issues in a professional or personal capacity.

This report has three main Sections:

• the first is concerned with the key sectors of education, employment, and social care and health. In each case, the report summarises the key issues and areas for action that were identified in the various discussions and workshops

• the second sets out the presentations, remarks and perspectives given by four members of the ND community and a parent of a child with severe related impairments. These presentations set the scene for subsequent plenary discussions

• the third section is concerned with the expert presentation given on aspects of the Courts system and some difficulties they pose for ND people.

The conference programme and those attending are at Annex 1.

SECTION 1: KEY SECTORS – ISSUES AND

SOLUTIONS

EDUCATION

Issues

Awareness of Neuro-diversity is very low in most mainstream schools and elsewhere in the education system. This applies to Neuro-diversity in general as well as to particular conditions such as dyspraxia. Education authorities are also often weak in providing diagnosis as well as guidance.

As a result, many teachers and other education professionals are ignorant of ND, with the consequence that individuals can experience inadvertent as well as deliberate discrimination and disadvantage experienced by individuals. Bullying by other pupils can also be common with little done to correct this (for example all three speakers from the DRC Neurodiversity Group had experienced such bullying).

The education system frequently operates on a group basis, with relatively little attention paid to the needs of ND individuals who in practice differ to a significant extent from the non-ND pupils. Class sizes can have an important bearing, with large classes tending to disadvantage ND pupils.

Once a person with ND leaves the education system there are almost always no appropriate support services in the workplace causing a high level of unemployment amongst people with ND or they are sacked from their jobs because adjustments in the workplace have not been implemented. This was for example a recurring theme from all four guest speakers.

Research into graduates with ND in the workplace has shown there is conclusive evidence to suggest they are not as successful as NT (Neurotypical) graduates in the workplace. Bullying and dismissal are far more frequently encountered by ND graduates Awareness training in ND in the university careers service, in job centres and for employers are needed, as is the adaptation of job descriptions for ND individuals. Research has found that 75% of the sample of people with ND did not find work appropriate to their abilities and qualifications (outside further academic study and research).

Careers advisers, at universities and elsewhere in the education system frequently lack familiarity with and sensitivity to the particular abilities and needs of ND individuals.

In service training of ND awareness is also needed for existing support staff and teaching staff in schools, youth service, further and higher education.

Solutions

There needs to be major investment in the initial and ongoing training of teachers and other education professionals.

PGCE courses can be made accessible to a greater number of ND individuals, helping to raise awareness throughout the teaching profession.

This training must include awareness raising on ND conditions and ways to bring out the special ability of the individuals and to overcome barriers they typically face. In particular, there needs to be enhanced and accurate early diagnosis of conditions coupled with a focus on the capabilities of the individual as well as the particular support they may need.

An inclusive approach is required, based on partnership with and involvement of the individuals concerned as well as their chosen representatives. This should extend not only to professionals and education authorities, but also to fellow pupils and students. In this way, broad based understanding and helpful cultures can be built.

At all stages and levels, stereotypes and pigeon-holing must be tackled. Schools and other education institutions should have in place well-developed “recovery systems” for those who fall behind, and extensive use should be made of the [“Pathways”] opportunities to help realise the potential of all pupils and students.

A number of special schools may not be providing sufficient challenge to ND pupils who as a result do not realise their full potential. Where special provision applies, it should be based on the involvement of ND individuals, their advisers and parents.

The general assumption is that mainstream schools offers the best way forward in that they can help the integration of ND pupils while at the same time raising the awareness and changing the attitudes of non-ND pupils and students.

However, provision in mainstream schools must be capable of meeting the particular needs of ND individuals. There are moreover some individuals for whom mainstream education currently poses great difficulties and special provision for them – on a full or part time basis – may sometimes be the best answer until the standard of tailored provision in mainstream education is everywhere raised to the standard of the best.

Throughout education, contact and dialogue between the ND and non-ND perspective is to be encouraged. The positive aspects of ND should be highlighted, including highly developed skills. ND individuals are often ideally placed to provide this familiarisation.

Educational technologies and techniques must be applied that positively benefit ND people, and not disadvantage them as can happen with for example assessment and appraisal techniques.

Closer working should be established between universities and colleges with business to help ensure ND individuals secure the skills and training they need to obtain and to progress in jobs.

EMPLOYMENT

Issues

With some notable exception, there is a huge lack of understanding on the part of business and employers more generally about ND. This is very widespread although some smaller companies and organisations have proved more adaptable than large organisations.

Recruitment and promotion policies and procedures, working environments and work practices rarely reflect the needs, or potential, of ND individuals.

Some unadjusted technologies can also pose difficulties as can procedures and systems (including performance appraisal arrangements) designed with non-ND people in mind.

In employment there is often a strong emphasis on team working where as many ND people do not find it immediately easy to fit in with peers at work.

There is considerable scope for strengthening trade union representation of and support for ND workers. There is a case for a union specific to ND.

Benefits and welfare reform can also work to the disadvantage of ND people through lack of recognition of ND as a disability and through lack of awareness on the part of medical professionals providing assessments and advice relevant to the receipt of benefits. Different approaches appear to apply with respect to different benefits.

Different approaches appear to apply with respect to different benefits.

Undiagnosed Neurodiversity and lack of understanding of those diagnosed with ND can cause misunderstandings and lead to unjust withdrawal of welfare benefits. If a person with ND is unable to hold down a job because their undiagnosed or unrecognised access needs are unmet, they are likely to have insufficient National Insurance credits to be entitled to Incapacity or sickness benefits. They may as a result be pressurised into unsuitable work placements, or be excluded from receiving any benefits, leading in turn to poor life chances and poverty.

Progress towards effective Independent Living is slow and patchy.

Solutions

Disability and other relevant training for employers and their nonND staff should include awareness-raising about ND and he potential of ND individuals.

Working environments in terms of noise, space and other characteristics should as standard be designed with ND in mind, and on the basis of the involvement of ND individuals.

The trade union movement should pay closer attention to ND in terms of training their own officers, provision of advice and support and possibly organising specific sections within their organisation. The role of the League of Blind and Disabled People within RADAR should be publicised.

The public sector has a key role to play as employer as well as provider of public services. And the statutory Disability Equality Duty (DED) provides a framework for stimulating public bodies into greater awareness and helpful action.

ND conditions should always be included among the disabilities covered by the DED, and all employers should be made aware more generally that ND conditions are covered by the duties laid down by the Disability Discrimination Act.

Government, and particularly the Office for Disability Issues (ODI), should accelerate progress towards Independent Living including through implementation of the recommendations in the “Life Chances” report produced by the 10 Downing Street Strategy Unit.

The Department for Work and Pensions has a particularly important role, including through Job Centre Plus and the operation of Access to Work.

As part of any continuing government action on benefits and welfare reform, attention should be paid to particular circumstances of ND claimants. The training of benefits officers and their advisers should include awareness-raising on ND, and the rules governing benefits decisions should consistently include ND conditions among the disabilities in question.

ND individuals should be encouraged to consider the help they could receive from the Claimants Union.

Health and Social Care

The direct involvement of ND people in the design and operation of the services are crucial to ensuring effective and efficient provision. The individuals themselves understand their conditions best and the best associate packages of health and social care.

The advantages and benefits for ND people of direct payments remain substantially underestimated and ignored.

Training in awareness, diagnosis and actions to take must be greatly enhanced at all levels in the health and social care professions, in initial training and ongoing professional development.

Training in the risks of “diagnostic shadowing” should be enhanced, together with enhancing the ability of the medical professions to distinguish between different types and combinations of ND conditions, and also between ND conditions, learning disabilities and mental health problems.

A “one-size fits all” approach to service provision is especially inappropriate for ND people. Individuality is key here, and tailored services will produce the best lasting results.

Far greater coordination, record-sharing and “joined-upness” between the health and social service is needed to ensure continuously appropriate, informed care and service to ND individuals.

Appropriate housing, and particularly social housing, arrangements are fundamental to improving the opportunities and the quality of life of ND people. But awareness of their accommodation needs is low, and actual provision is even more limited.

Health and social care premises need to reflect the sensory and other needs of ND individuals. Open plan spaces and wards can prove particularly difficult for them.

Advocacy services and other working closely with ND people should be enhanced to assist not only communications but also to help highlight the special and pressing difficulties they face.

SECTION 2: PRESENTATIONS AND REMARKS BY GUEST SPEAKERS

“A NICE GIRL BUT JUST NOT SUITABLE!” Janet Taylor’s presentation

Phone: 07791-273792

Email: janet@dyspraxia-training.co.uk

Web: www.dyspraxia-training.co.uk

My name is Janet Taylor I am the unpaid co-ordinator of Greater Manchester Dyspraxia Adult’s Action. I set up a self help group for adults with dyspraxia after experiencing medical retirement caused

by disability discrimination. For the past six years I have empowered other adults living with dyspraxia and related impairments and raise awareness to avoid the same thing happening to other people living with dyspraxia.

I am at present a student teacher on the PGCE at the University of

Bolton Teaching Further and Higher Education. M My Work Based Experience currently includes teaching the Politics of Disability at the University of Bolton and Community and Youth Work at the University of Manchester. I also have my own part time consultancy business Dyspraxia Inclusive Training.

Although I am now confident and successful particularly academically this has not always been the case. I live with dyspraxia and dyslexia and probably Attention Deficit Disorder without hyperactivity which were not identified until I was 33. Because Dyspraxia often overlap with conditions such as dyslexia ADD, Aspergers Syndrome and Tourettes Syndrome people with these conditions choose to call the umbrella term neurodiversity.

My research into Graduates with ND in the Workplace showed that there is conclusive evidence to suggest that graduates with ND in the workplace are not as successful as NT (Neurotypical) graduates in the workplace. Issues which would not affect NT graduates but are unique to ND graduates include being sacked from their jobs or bullied due to lack of organisation. Awareness training of ND in the university careers service, job centres, for employers and the adaptation of ND-friendly job description is needed. 75% of the sample of people with ND did not found work appropriate to their abilities and qualifications outside academic study and research. (Taylor 2006)

I am now going to confess to the items I leave off my CV although this was not my fault but due to disability discrimination and lack of ND awareness in educational institutions and the workplace. This caused my neurodiverse impairments to become a disability. This caused several disabling barriers because my needs were overlooked and I significantly underachieved and believed I was an unemployable failure and was extremely depressed and disempowered.

At school I failed my 11 plus and found my self in the bottom remedial class and moved up to the average steam in Second year. I found competitive sports and PE. a nightmare and I was always the last to be chosen for the rounders or netball team. I found it very frustrating that marks were given for copying the teachers’ work neatly off the blackboard and not for original thought it was difficult to write neatly, copy accurately and spell. I was constantly bullied by my peers.

I left secondary school with the types of grades were perfectly acceptable for my school but I realise now that I had significantly underachieved. My career advisor, who did not even know me well, recommended that because I was "non academic", I should go into catering which proved to be totally unsuitable. I was sacked from several jobs for not being quick enough and an inability to multi task when working under pressure in a busy kitchen and was told each time that I was “a nice girl but just not suitable”.

I was punished by the benefits system for trying to get out of the high level of unemployment of the 1980’s in Manchester, by having my unemployment benefit halved for being dismissed from a job.

This kind of issue still happens today if Job Centre staff are not aware of dyspraxia - filling in application forms illegibly can be misinterpreted as deliberately not trying to find work.

I worked on an employment scheme as a classroom support worker at a community college with people with learning difficulties and proved to be good at this. I went on to do a course for teaching adults with learning difficulties and passed with flying colours.

I then got a job as a residential Support worker with people with leaning difficulties. But due to lack of understanding of my own difficulties and to my employer's ignorance of dyspraxia, I found this too stressful.

I was redeployed into a daycentre with highly physically dependent service users in spite of disclosing I had co-ordination difficulties. I became very depressed was bullied by my peers and lost my self respect.

A college of occupational therapists study showed that Over 80% of people with dyspraxia diagnosed after the age of 7 showed negative emotional outcomes (Mental health problems, unemployment, homelessness, substance addiction, and /or abuse by the age of 23), compared with the rest of the population. Dunford & Richards(2003)

Unmet needs of dyspraxia and ND can result in offending. Studies have shown a greater percentage of people than would be expected.

(Kirk and Reid 2001) study in Scottish prison showed that

50%of inmates had dyslexia (Portwood 1999) found that in a Durham Young Offenders Institution. 61% had dyspraxia and 46% had a co-morbidity of dyspraxia and dyslexia.

“It is estimated as many as 5% of school age children have ADHD and 100,000 children need treatment. 23% of crime has been attributed to or non existent diagnosis of ADHD children in care homes. Court records suggest that ADHD youths are more likely to be arrested and have multiple convictions BBC news (2004)”.

After seven years I was then redeployed into a very busy open plan office which is highly distracting if you live with ND and I was advised not to disclose my disability, I delivered faxes to the wrong room, struggled with the photocopier and put people through to the wrong extension number causing utter chaos. So I ended up getting medically retired.

Since being diagnosed with dyspraxia, being medically retired and coming to terms with my learning differences, instead of being ashamed of being dyspraxic and hiding that I am different from other people, my life has in fact been transformed. From feeling absolutely worthless to being confident enough to teach and attempt to build up a customer base for my dyspraxia awareness business - Dyspraxia Inclusive Training. I recently have been considered for some work teaching community and youth work in September 2008 when the new Community and Youth Work Studies degree starts at the University of Bolton.

Being labelled ‘dyspraxic’ is no longer a major issue and is only part of who I am. However there are still many thousands of children, young people and adults with all types of Neuro-Diversity with a wide range of differing abilities who unnecessarily live a very difficult life, and in particular as adults face long term unemployment, depression and anxiety. This is due to lack of awareness of Neuro-Diversity. And it is that lack of understanding that causes so much suffering, rather than my ND brothers and sisters actually suffering from neurodiversity.

Bibliography

Dunford C, Richards S. 2003 doubly disadvantaged: a report of a survey on waiting lists and waiting times for occupational therapy services for children with developmental coordination disorder. London: College of Occupational Therapists, National Association of Paediatric Occupational Therapists.

BBC news http://bbcnews.co.uk (2004 12/15)

Portwood M (1999) Developmental Dyspraxia: Identification and

Intervention a manual for parents and professionals David Fulton:

London

Kirk J & Reid G (2001) An examination of the relationship between dyslexia and offending in young people and the implications for the training system. University of Edinburgh.

Taylor J (2006)Graduates with Neurodiversity in the Workplace A Dissertation Submitted in Part Fulfilment of the Requirements for the Post Graduate Certificate in Professional Development:

University of Bolton

MY EXPERIENCE OF AD(H)D – YOU JUST CAN’T KEEP ME DOWN

Remarks by Mary Colley, Director DANDA

Thank you Janet for reading this out and sorry I can’t be here today, but I have a diary clash with another important conference – on AD(H)D in London. Of course, I really would have liked to go to both!

Many of you will already know me as somebody who has dyspraxia as I’ve talked and written about it widely particularly in adults. However recently, as I‘ve learned more about myself, I feel I have AD(H)D just as badly as dyspraxia.

I was diagnosed with both AD(H)D and dyspraxia about 10 years ago. Both AD(H)D and dyspraxia are part of neurodiversity along with many other conditions including dyslexia and Asperger’s Syndrome. I believe I have both these conditions as well mildly. I’ve been diagnosed with dyslexia and want to get diagnosed with Asperger’s soon.

Janet has talked about her dyspraxia and I share many of the symptoms of that condition with her. However, I believe my dyspraxia is made much more difficult to deal with owing to my AD(H)D, though it does make me very energetic and determined!

Because of my AD(H)D, I find it very difficult to control and regulate myself. I find it difficult to wait for anything and need immediate gratification. I am frequently frustrated and irritable.

Simple everyday tasks are a real problem for me; I find it really difficult to clear up after myself as well as finding it extremely boring. I also find grooming myself and doing household tasks very boring. I flit from one task to another and I often find that I forget what I’m meant to be doing in the middle of something and start doing something else.

However, I can focus for hours at a time on something that I am interested in such as AD(H)D and dyspraxia in adulthood! I’m sure one of the reasons that I am so unco-ordinated is because I can’t sustain my attention on simple tasks such as eating in a controlled manner for long. I, consequently spill things down myself all the time - but I often don’t notice this. Sometimes I’m far too impulsive for my own good and I find it difficult to regulate myself as withl all adders. I tend to eat and drink too much.

I had an awful childhood. At school, I had no friends for most of my secondary school education and was constantly bullied. My teachers were always having a go at me for my ‘careless’ work, messy handwriting, bad spelling and bad English. They also commented on my inability to pay attention and listen. They did everything they could to put me down. In fact, they told me that they couldn’t possibly guarantee to get me through my A levels, let alone get me into university.

At that point, I thought I’d show them and I was delighted to be able to tell them that I got into university a few years later in spite of them. To this, they said – ‘well we just can’t keep you down - can we’. I got a good degree, considering how unsupported I was, and really enjoyed my time at University.

However, I found the world of work really difficult. I worked in a photo library (quite the wrong job for me!) where I had to file pictures so they could be retrieved easily to be sold to newspapers, books etc.

I found the job overwhelming because of my bad organisational skills. I didn’t understand the unwritten rules that go with any job. I hated being told what to do especially when I thought it was silly. (I, like many adders, can be very defiant). I kept losing things and because of this and my poor communication skills, I was eventually sacked.

I bounced back after my diagnosis a few years later. I was prescribed dexamphetamine, a drug like Ritalin and have had some coaching to help me organise myself better. (I had to go privately though as it’s very difficult to get any help on the NHS.) Unfortunately, I can’t take dexamphetamine as often as I would like as it raises my blood pressure, but when I do it calms me down most of the time.

In the end, I set up DANDA (an organisation for Neuro-diverse adults) with others. I really like working for myself. I run workshops on adult dyspraxia and AD(H)D on a self-employed basis. It can be very difficult for me to be organised sufficiently to do what I’m doing in DANDA, but as I’m so motivated and determined, most of the time I can do the job alright.

I am incredibly energetic and can see things others just can’t see as a result of my AD(H)D. I, with others, planned and organised two successful conferences for professionals on Neuro-diversity - well over 200 attended both events. You just can’t keep me down!

DIFFICULTIES, DIAGNOSIS, MAKING PROGRESS

Orla Reardon’s presentation

• Orla is 30. She works for Newcastle City Council as an admin assistant in the chief executive’s office.

• She was diagnosed with Asperger’s Syndrome (AS) 4 years ago, aged 26. The difficulties that Orla experienced as a result of her condition were picked up at an early stage in her life but no one could pinpoint exactly what the problem was as AS was not then widely recognised in the medical field.

• Diagnosis brought about sense of great relief. Orla had always felt different pre-diagnosis. Diagnosis and actually being given a name for her condition meant that she no longer felt alone in what she was going through. She now feels like a completely different person – her life has turned around, she’s made lots of friends and feels ‘alive’ as she’s not so scared of life now.

• Life as a whole has been extremely difficult. School was complete torture. Orla was bullied throughout school, and this didn’t stop at college either. Orla had no friends at school; she drifted from group to group. She felt she couldn’t stand up for herself and had no self-confidence. She found it difficult to speak to people, thus people thought she was ignorant or that she didn’t want to speak to them.

• What she was actually experiencing was quite the opposite to what people perceived; Orla was very withdrawn and felt unable to interact, thus she would choose to be on her own in her ‘own little world’ where no-one would judge her. Although school and college were difficult for her, Orla gained many qualifications; 11 GCSEs, 3 NVQ’s and also various IT qualifications.

• Even in the workplace Orla was experiencing problems (bullying/harassment), as well as unanswered feelings that resulted (she later discovered) from her condition. When this reached crisis point she had to take some time out, as she

was experiencing depression, low self-worth and no will to get better. It was during her time away from work that Orla found out about AS.

• Diagnosis, however, was far from easy. Orla had to receive a private diagnosis, and it took a very long time. This is partly due to the fact that there is no set diagnosis route, which Orla feels definitely needs to be addressed as there are too many ways of assessing AS.

• Once she received an actual diagnosis, Orla received no post-diagnosis help. Any help that was finally offered was of little use, as the so-called professionals had very little knowledge of AS, and did not even seem to believe Orla’s formal diagnosis.

• However, Orla has devised certain ways of coping with AS. She avoids stressful situations that will make her AS worse, and focuses on being as happy as she can be. She is now in a good working environment, and has very supportive colleagues and friends who are very encouraging, which makes a huge difference as Orla has now become more confident in herself and when interacting with others.

• Orla lives independently and manages a house and car (only a small percentage of people with AS can do this).

• Through learning from her own experiences, and how illeducated many people are about AS, Orla is determined to educate others and to change misconceptions about those with AS. That is why she joined the DRC Neurodiversity and Autism Action group.

• Although determined, Orla still finds it a struggle as it is very frustrating getting through to other people. If she becomes disheartened Orla focuses upon how far she has come and what she has achieved despite the lack of medical support that she experienced.

• Orla hopes that by sharing her experiences with others she will make a difference to others with AS, and will get the message out to those who are unaware or misinformed.

BEING NEURO-DIVERSE AND KEEPING IT REAL IN AN

UNREAL SOCIETY

A Presentation by Ben Stone

A life less Neuro-typical

• My childhood was difficult – Autism was mentioned by several people, including doctors, but the ‘Experts’ dismissed this.

• I struggled socially at school & college, found it hard to make friends, and often played on my own.

• I’ve had several jobs, some good, some bad, but the general trend of me finding it hard socially persisted.

• In the late 1990s, I decided I wanted to study for a degree and quit my job to go to University. Several years later I now have two degrees, but a decent job still eludes me like a mirage in the desert.

• I often feel isolated, still find it difficult to develop relations with people, but I’ll never give up trying.

My Neuro-diversity and searching for the truth

• It was at University that my being Autistic was mentioned to me, by a lecturer, years after it first being suspected.

• I saw a GP, but he advised me that I wouldn’t be having a conversation with him if I was Autistic. Despite this, I managed to get a referral to Manchester Royal Infirmary.

• At MRI, I was dismissed as ‘maybe Autistic’ and sent on my way, but once again I was persistent and eventually got a referral to Professor Digby Tantum’s team at Sheffield University Hospital.

• In late 2004, I was diagnosed with ADHD and Autism Spectrum Disorder. All along the way I simply wanted to learn the truth, and the diagnosis did bring a sense of closure, and answered why I had some of the problems I did.

The Post Diagnosis Era

Awful experiences with:

• DWP

• Scope

• Autistic Society Greater Manchester Area (ASGMA) / Aspirations Project

Good experiences with:

• National Autistic Society

• DANDA

• Key 4 Learning

• Disability Rights Commission

The Future…

• Despite the bad experiences I’ve had, I’ll try to learn from them and become stronger.

• I can bridge the gap between the Neuro-diverse and Neurotypical world, and if I can find the right job, will go places.

• The big challenges for me are employment, housing, and developing better social skills/confidence.

• My aspirations are the same as anyone else’s – to attain a good quality of life, have some real friends, and do something worthwhile with my life.

My Vision

• Neuro-diverse people getting the same opportunities as everyone else.

• A fairer society where all people can believe in real justice, be tolerant, empowered, and be able to better themselves.

• Individuals and organizations being more accountable and taking responsibility for their actions.

• Progressive devolution of power from Westminster to newly created elected County Governments.

• Proportional representation adopted for all future elections, which will be fixed term, both County and National.

A PARENT’S PERSPECTIVE

Remarks by Jean McGealey

I have two stories about my son Ian. He is now 25 and is in the ‘system‘. He has learning difficulties and cerebral palsy but even with his special needs he has trouble ‘fitting in’. He had to attend a school in Manchester and college in Stockport, but that’s another story!

We finally got a diagnosis of autism when Ian was 10.

As I said I have two stories to tell. They are examples of how things could have been done better and how things were done better.

The first story, however negative, was an experience which made us very proud of Ian.

It starts with a phone call at 8.30am one morning in March 2002. A gentleman told me that Ian had been chosen to carry the baton for the Denshaw (near Oldham) stage of the Commonwealth Games. I thought it was a wind-up but after talking to my husband, David, I discovered it was the truth. He had put Ian’s name forward and not told anyone as he didn’t expect Ian to be successful.

After numerous discussions by telephone the organisers would still not let David walk with Ian and the baton. What did they think - we were going to run off with it?! We said Ian would have to use his wheelchair- more for his comfort. He would not walk with someone he didn’t know (sensible!) but may let a stranger push his chair.

The day came and we set off. When we got there Ian was helped to change into his uniform. He then met the other people in the team and had pictures taken. We all got on the bus and people were dropped off at the designated places.

But our hearts sank when we were dropped off in front of a primary school. About 180 children stood there cheering - Ian cannot cope with children or noise! By now he was chewing his t-shirt and trying to get out of his wheelchair.

Worse came to follow as the person came up the road with the baton escorted by police bikes. As the police saw the children, they thought it would be nice to turn their sirens on! The man who was escorting the baton carrier came towards Ian. He was a 6ft.2 police boxing champion, but Ian won the first round! The baton was placed in the attachment on Ian’s wheelchair. When the policeman tried to push the chair, Ian pushed him away.

The policeman was brilliant. He assessed the situation and asked David to take over. He took the camera from us and took pictures from the back of the vehicle that was proceeding in front. If only the organisers had listened to us, Ian and David could have walked in uniform with the baton!

Having said that, we will always be proud of Ian and will never forget the brilliant policeman!

The second story is an example of good practice.

Ian does not have any verbal communication. He finds it very difficult to let people know what he wants other than immediate needs like food and drink. In Oldham Social Services there is an excellent communication team. Last year they began a pilot scheme to help Ian get his own “passport”. This is a small booklet that he takes everywhere. It contains information about Ian’s likes, dislikes, what upsets him, timetable etc.

Such passports are all different. Some people can give others pictures to show what they want or even objects. The pilot scheme was brought in last year by speech therapist students from Salford University. The two students assigned to Ian talked to me to find out about him. When they began they knew nothing about autism. They certainly knew a lot more when they had finished!

The passport scheme was a great success and is still continuing.

SECTION 3: ASPECTS OF THE JUSTICE SYSTEM

1. Case Study; JS

JS demonstrated the devastating effects of stress in a case that came before the magistrate’s court.

The offence under which CJ was charged was an illustration of the effect of stress. Caught speeding on the way to work, he was asked to blow into a breathalyser (although it was only 8am) but found himself quite unable to blow, only to perform the opposite action and gasp for breath. He was then also charged with the more serious offence of obstructing the police.

Strongly advised to plead guilty, CJ reluctantly accepted that he would gain a police record. It was only after discussing the incident together that it became clear that there had been no wilful obstruction on CJ’s part, on the contrary, he had been struggling to comply with the officer’s request knowing that he had not consumed any alcohol but the harder he tried to provide to breathe into the breathalyser the more impossible it became.

The matter came before the magistrates with a changed plea for the obstruction charge; it was now incumbent on me to show that dyslexia could be a ‘reasonable excuse’ to explain why this involuntary non-cooperation had taken place.

CJ’s performance on the day enabled me to witness how a normally sociable and chatty individual can be rendered almost speechless by the stress of questioning in court. A slight delay between hearing something and understanding it meant that CJ was unable to give an immediate response but suffered a ‘penny dropping’ delay before being able to work out what the question was getting at. Sometimes his answer would reveal that he had missed the point, sometimes pronunciation difficulties would cause him to stumble or he would produce spoonerisms (recalling the crude depiction of dyslexia by the media). Being aware that he was making a poor impression, his stress worsened until he was barely audible.

Moreover, CJ had a short attention span so found it increasingly difficult to concentrate; one saw him narrow his eyes in an attempt to stay focused while he had clearly reached mental overload and was unable to think clearly. Afterwards, although he won his case and was only charged with speeding, CJ could only comment: “I went completely to pot there!”

EXTRACT: Letter from the Driver & Vehicle Licensing Authority (DVLA) to JS

Dear Mr S

We have received a report from the Police which suggest that you may have a medical condition which could affect your ability to drive safely. This means we now need to make enquiries, in the strictest confidence, into your fitness to continue driving. …Will you please fill in and sign the enclosed form…

Extract from the form

3b) DO YOU HAVE EPISODES OF CONFUSION? Yes / No

The case study and its implications were discussed in Group session. Annex 2 sets out related material on good practice and guidance relevant to the justice system.

ANNEX 1. CONFERENCE PROGRAMME AND THOSE ATTENDING

“NEURO-DIVERSITY – MEETING THE CHALLENGE”

CONFERENCE AT RADISSON EDWARDIAN HOTEL, PETER STREET, MANCHESTER, M2

MONDAY 26 MARCH 2007, FROM 10.30 – 16.30

The purpose of the conference is to identify how secure equality and fairness for people in the neuro-diverse community and the autistic spectrum in key sectors of society and the economy – in terms of employment, quality of service and rights as citizens. There will be a particular focus on the most effective ways of getting people in positions of influence to deliver the necessary change and progress.

The actions and recommendations flowing from the conference as well as a record of the key discussions will be published and promoted by the Disability Rights Commission.

The broad programme is as follows:

09.45	Registration and coffee
10.30	Start and introductory remarks from Bob Niven. Plenary discussion – Marketing neurodiversity to the professions: what does preparing for this conference tell us?
11.00 – 12.45 (with coffee at 11.30)	The individual’s perspective Keynote remarks by members of the DRC Neurodiversity and Autistic Spectrum Action Group. Plenary discussion and Q&As. Chaired by Jo Todd, Director, Key4Learning
12.45	Lunch in Alto Terrace Restaurant
14.00	Getting through to decision-makers Breakout groups on key sectors (criminal justice, social care and education)
15.30	Tea
15.45 – 16.30	Report back from Groups, and identification of next steps
16.30	Close

Conference participants

Name	Organisation
Adrian Whyatt	Department for Work & Pensions
Alan Shoreman	Remploy
Ashley Crook	Greater Manchester Dyspraxia Adult Action
Balwant Subharwal	Disability Rights Commission
Ben Stone
Beverley Hirst	Greater Manchester Dyspraxia Adult Action
Bob Niven	Disability Rights Commission
Claire Jones	Disability Rights Commission
Donna Lawrence	Equalities National Council
Elizabeth Guest	Leeds Metropolitan University
Emma Cresswell	Disability Rights Commission
Eve Rank	DRC Commissioner and DRC Learning Disability Action Group
Gary Powell	Equalities National Council
Geraldine Fletcher	Greater Manchester Dyspraxia Adult Action
Graham Nickson	Disability Rights Commission
Hayley Lismore	Disability Rights Commission
Hazel Devereux	Edge Hill University
Hazel Kirby	Disability Rights Commission
Heather Haskell	Greater Manchester Dyspraxia Adults Action
Ian Cruchley	Dyspraxia Group member
Idem Lewis	DRC Learning Disability Action Group
Janet Taylor	GMDAA
Jean McGealy	Parent
Jo Todd	Key4Learning
John Hayworth	Greater Manchester Dyspraxia Adults Action
Jonathan Timbers	Disability Rights Commission
Katie Grant	Disability Rights Commission
Lynda Richards	OSCA
Mari Saeki	National Autism Society
Mark Shrimpton	DRC
Colin Revell	Special adviser
Melanie Jameson	Dyslexia Consultancy
Mia Rosenblatt	National Autism Society

Michelle Oakes	Creative Thinkers Network
Mike Young	Disability Rights Commission
Mohammed Kebbay	Black Londoners Forum
Mrs J S Hyman	Greater Manchester Dyspraxia Adult Action
Munir Lalani	DRC Mental Health Action Group
Nicola Hallett	Ethical Images
Orla Reardon	Newcastle City Council
Paul Davies	Oldham Civic Centre
Rachael Bolden	Disability Rights Commission
Sarah Harris	Manchester MRI
Sharon Patterson	Disability Rights Commission
Sinead Gordon	Disability Rights Commission
Susan Garnett	Disability Rights Commission
Teressa Rayner	GMDAA
Wendy Aspin	Oldham Civic Centre

ANNEX 2: GOOD PRACTICE AND OTHER GUIDANCE CONCERNING THE JUSTICE SYSTEM

Melanie Jameson, BA, PGCE, Dip OCR in Specific Learning Difficulties, AMBDA

Dyslexia Consultancy Malvern Email:

dyslexia.mj@dsl.pipex.com

Disability Rights Commission Public Services Conference 26^th

March 2007

INFORMATION FOR COURT PROFESSIONALS

DIFFICULTIES ASSOCIATED WITH DYSLEXIA, DYSPRAXIA

AND ATTENTION DEFICIT DISORDER IN RELATION TO THE

COURTS

The following Problem Areas are typically experienced by people with Dyslexia, Dyspraxia and Attention Deficit Disorder in the courts. Coping abilities will vary from person to person.

Difficulties with Memory

• Recall of dates and details (this may give the impression of unreliability)

• Particular problems estimating the passage of time (this could be important when giving evidence)

Communication

• Difficulty in understanding oblique, implied or complex questions

• An inconsequential style of speaking that does not seem to keep to the point

• Over-loud and/or garrulous speech

• Word finding problems, leading to poor self-expression

Attention / Emotion

• A limited attention span leading to mental overload and / or a high level of distractibility

• Particular susceptibility to the effects of stress

Sequencing / Orientation

• Great difficulty presenting a sequence of events in a logical, structured way resulting in possible inconsistencies

• Incorrect sequencing of number and letter strings (such as car number plates)

• Inaccurate references to left and right

Literacy

• Even if reading skills are adequate, skimming through documentation or easily locating a piece of information in a court bundle is very problematic

• The experience of visual stress when reading, leading to a symptoms such as a glare from white paper, the perceived blurring or fading of print, eye strain and continually losing the place; this can be exacerbated by fluorescent lighting

• Erratic spelling and/or awkward or illegible handwriting

Reasonable adjustments should be made as appropriate, in line with the Disability Discrimination Act.

ACCOMMODATIONS BY COURT PROFESSIONALS

When delivering spoken information

• Allow thinking time before pressing for a response.

• Allow the client to ask for questions to be repeated or rephrased without censure or (implied) criticism. The client may need to check understanding by rephrasing questions.

• When reading information out to a clinet, insert pauses after each section to allow the information to be absorbed.

• When providing complex information (such as explaining a person’s rights) first introduce the topic, then give the details, then summarise if necessary.

• Check back to ensure understanding.

• Be aware of a likely limited attention span and the possibility of mental overload.

When delivering / referring to written information

• Be aware that some dyslexic people have considerable difficulty extracting the meaning from written material, despite being able to read adequately.

• If the client suffers from visual stress (see Literacy section on previous page) documentation for study or for reference in court should be adapted. Good practice concurs that written material should be well spaced and of a reasonable font size (not below 12pt) and justified left only. Bright white paper should be avoided in favour of tinted paper, such as pale blue or grey.

• Whole phrases in capital letters are harder to decipher because the normal shape of the word has been obscured.

• Since the effort required to decode text impairs overall comprehension, some clients will fare better if text is read to them. They may need a helper to find the place when extracts from a particular documents have to be located ‘on the spot’.

When requesting information

• Take account of likely difficulty recalling / reciting strings of numbers or letters (number plates, addresses etc.).

• Be aware that, in a stressful situation, recall of times, places and events may not be accurate. Comprehension will become increasingly impaired.

Additional factors

• In many cases, breaks will be necessary to restore concentration at least 10 minutes every 50 minutes of the proceedings. Many people with Specific Learning Difficulties will have reached ‘mental overload’ long before this.

• The stress and distractions of the court, together with the rapid ‘cut and thrust’ of questioning disadvantages people with Specific Learning Difficulties. Most would cope far better if allowed to use a video link, had a friend / ‘responsible adult’ to help locate and digest documentation and were encouraged to take their time in order to provide a thoughtful response to questions.

People with Dyslexia, Dyspraxia and Attention Deficit Disorder vary greatly, so these accommodations are not ‘one size fits all’. Do not make assumptions - individuals should be asked to state their preferences. Reasonable adjustments should be made so that disability does not lead to discrimination in the courts. The website of the Department for Constitutional Affairs contains further information on Disability and the Courts.

© Jameson 2007

Melanie Jameson, BA, PGCE, Dip OCR in Specific Learning Difficulties, AMBDA

Dyslexia Consultancy Malvern

Email: dyslexia.mj@dsl.pipex.com

Disability Rights Commission Public Services Conference 26^th

March 2007

SHORTENED EXTRACT FROM: DYSLEXIA AND STRESS (2^nd edition pub 2004 Whurr Publishers) Ed. Prof TRM Miles

Chapter 6 Dyslexia and the Law / Stress factors and the courts

Melanie Jameson

Example of a ‘covering note’ for a plaintiff or witness

Ms P contacted me because she knew that her dyslexia would make it very difficult for her to present her case clearly or respond promptly and effectively to questioning. She feared that the inevitable stress and anxiety would further limit her abilities. After an interview and a study of her dyslexia assessment, it was possible to draw up the document below which could be circulated through her solicitor in advance of the hearing.

HEADED PAPER

To whom it may concern.

Re: Ms P Case reference number: xxx

Ms P experiences certain difficulties which are characteristic of dyslexia, namely:

• a weak short-term memory

• auditory processing difficulties i.e. she experiences a delay between hearing something and understanding it

• word naming problems i.e. using inappropriate words at times either in error or because she cannot recall the correct word.

The above problem areas are exacerbated by stress, making aspects of functioning, particularly relating to memory, very difficult.

We are concerned that, if these difficulties are not taken into account during the forthcoming hearing, Ms P will be seriously disadvantaged.

Ms P’s assessment report can be provided on request.

Further information of the implications of dyslexia is included with this document.

[END OF REPORT AND ANNEXES]