The National Picture

1
The National Picture

• Annette English
• South East Spotlight - ASDs
• 23rd March 2006

2
The National PictureAims for this session

• National picture
• Regional work
• Local developments

3
The National PictureThe Context
4
Setting the Scene European Developments
5
Autism-Europe and the European Charter for Autism

• Autism-Europe aisbl is an international
  association whose main objective is to
  advance the rights of persons with autism
  and their families and to help them improve their
  quality of life.
• Autism-Europe ensures effective liaison between
  approximately 85 member associations of parents
  of persons with autism in 31 European countries,
  including 20 Member States of the European Union,
  governments and European and international
  institutions.

6
The European Charter for Autism

• In May 1992, Autism Europe published a Charter of
  Rights. This Charter was adopted as a Written
  Declaration by the European Parliament on May 9th
  1996 following an intensive campaign

7
The European Charter for Autism

• 19 statements of rights
• People with autism should share the same rights
  and privileges enjoyed by all of the European
  population where such are appropriate and in the
  best interests of the person with autism
• These rights should be enhanced, protected, and
  enforced by appropriate legislation in each state

8
The European Charter for Autism

• The right of people with autism to accessible and
  appropriate education
• The right of people with autism to accessible and
  suitable housing
• The right of people with autism of equal access
  to and use of all facilities, services and
  activities in the community

9
APPGA Manifesto

• On May 14th 2003 the APPGA launched its
  Manifesto

10
The All Party Parliamentary Group on Autism
(APPGA)
11
The All Party Parliamentary Group on Autism
(APPGA)

• A cross-party back-bench group of around 300 MPs
  and Peers with an interest in the issues facing
  people on the autism spectrum.
• Established in February 2000
• Chair Liz Blackman MP

12
The APPGA Aims

• To raise awareness and understanding amongst
  Parliamentarians
• To raise the political salience of autism issues
  and to ensure greater public policy attention
• To achieve specific improvements in government
  policy that benefits the priority needs of the
  autism movement

13
Activities of the Group

• A series of information-giving speaker meetings.
  Speakers either leading academics or
  campaigning parents. Recommendations for the
  government given at each meeting, compiled by
  autism organisations.
• Prevalence Education LEA Provision Early
  identification and intervention Services for
  Adults with Aspergers Syndrome Employment
  Respite Research Access to Health care
  Training National Service Framework

14
Activities of the Group

• Parliamentary questions and Adjournment debates
  on general issues re autism and Aspergers
  Syndrome
• Invitations to ministers to present to the group
• Delegations sent to ministers
• Letters from the Chair to ministers about
  particular concerns e.g. Benefits Agency medical
  assessments
• Reports

15
APPGA Manifesto

• Goals to be achieved by 2013
• 4 general principles
• Training, Research, Service Provision, Tracking
  and Planning of Services.
• 11 Specific Objectives
• Diagnosis and Family Support, Early Intervention,
  Medical Care, Respite Provision, Mental Health,
  Leisure, Welfare and Social support, FE/HE,
  Employment, Housing.

16
The All Party Parliamentary Group on Autism
(APPGA)

• For more information on the APPGA contact
  Robert Yuille at the National Autistic Society on
  0207 903 3769 or appga_at_nas.org.uk

17
Office of National Statistics (ONS) Report
(published August 2005)

• 1 of children aged 5 16 have autism
• MRC figures (2001) 1 in 166, under 8s
• 27 have been excluded from school with 23
  having been excluded more than once

18
Autism Research Co-ordination Group (ARCG)

• Mapping Autism Research Report
  (Charman and Clare, 2004)
• ARCG is cross Government
  Royal Colleges and voluntary
  groups funders like the MRC
  and Wellcome
•  
• First Annual report to be
  published in May/June 2006

19
Other Research News

• New charity, Autism Speaks launched at the Houses
  of Parliament on March 9th
• National Alliance for Autism Research - UK and
  Autism Speaks have merged following a similar
  merger in USA

20

• Care Services Improvement Partnership and the
  Valuing People Support Team
  have commissioned Judith North
  of Paradigm to pull together a
  Clarification Note on
• How key Govt policies apply to people with ASD
• Articulate what these policies might mean in
  terms of action by local
  organisations, in particular local government and
  the NHS
• Describe good practice

21
National Autistic Society PARIS Public Autism
Resource Information Service

• On-line service
• www.info.autism.org.uk

22
AutismConnect

• AutismConnects news items - the latest research
  development in the autism field and
  human-interest stories
• autismconnect_at_topica.email-publisher.com

23
The NSF Autism Exemplar

• Exemplar patient journeys illustrating some of
  the key themes of the NSF
• KEY THEMES
• Responding to the views of children and their
  parents
• Involving them in key decisions
• Providing early identification, diagnosis and
  intervention
• Delivering flexible, child-centred, holistic
  care, which is
• Integrated between agencies, overtime and is
  sensitive to individuals changing needs

24
Consistent themes

• Integrate services for children to improve
  co-ordination with which agencies are able to
  work together
• Joint fund multi-agency processes where possible
• Address issues associated with sharing
  information across agencies
• Consult and include a family perspective in
  planning and implementing service change

25
The National Picture Regional Developments
26
SEN Regional Partnerships Total of 11
Partnerships nationally Involving all 150 LEAs in
England
27
Regional Initiatives on ASDs

• Training SW SCRIP EM WM
• Conferences EM NW SERSEN WM
• Networks /Sharing practice EM YH SERSEN SW
  NW WM
• Video/DVDs SW
• Info to parents/professionals YH WM SERSEN
  NW Merseyside
• Early Intervention/research SERSEN WM London

28
The SEN Regional Partnerships

• Training
• South West
• www. sw-special.co.uk
• South Central (SCRIP)
• www.scrip.uk.net
• East Midlands
• www.emleas.org.uk
• West Midlands

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The SEN Regional Partnerships

• Conferences
• East Midlands
• North West
• South East (SERSEN)
• West Midlands
• www.westmidlandsrcp.org.uk

30
The SEN Regional Partnerships

• Networks /Sharing practice
• East Midlands
• Yorkshire Humberside
• South East
• South West
• North West
• West Midlands

31
The SEN Regional Partnerships

• Video/DVDs
• South West
• Aiming High

32
The SEN Regional Partnerships

• Info to parents/professionals
• Yorkshire Humberside
• West Midlands
• South East
• North West
• www.sen-northwest.org.uk
• Merseyside

33
Autistic Spectrum DisorderToolkit
34
Aim of the Att

• To produce a strategically planned Merseyside
  pathway to enable staff to assist pupils with
  autistic spectrum disorder to transition from
  current to receiving schools (Key Stage 2/3) by
  using the autistic spectrum disorder transition
  toolkit (Att)

35
www.autismtoolkit.com
36
Curriculum Documents

• Children With Autism
• Strategies for Accessing the Curriculum
• Key Stages 3 4
• Mick Connelly
• Blackpool Childrens Service Agency
• North West SEN Regional Partnership

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Contents

• Use the links below to download individual
  sections or the full document.
• English
• Mathematics
• Science
• Design and technology
• Information technology
• History
• Geography
• Modern foreign languages
• Art and design
• Music
• Physical education
• Citizenship
• Personal, social and health education
• Religious education
• Full document

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http//www.teachernet.gov.uk/wholeschool/sen/asds
/
39
The SEN Regional Partnerships

• Early Intervention/research
• South East (SERSEN)
• www.sersen.uk.net
• London
• www.londonsen.org.uk
• West Midlands
• www.westmidlandsrcp.org.uk

40
Work in the West Midlands towards the national
initiatives

• Training
• Diagnosis and Family Support
• Early Intervention
• Welfare Support

41
West Midlands Region focus on Autism Spectrum
Disorders

• Birmingham Staffordshire
• Coventry Stoke-on-Trent
• Dudley Telford Wrekin
• Herefordshire Walsall
• Sandwell Warwickshire
• Shropshire Wolverhampton
• Solihull Worcestershire

42
APPGA Manifesto

• Goals to be achieved by 2013
• 4 general principles
• Training, Research, Service Provision, Tracking
  and Planning of Services.
• 11 Specific Objectives
• Diagnosis and Family Support, Early Intervention,
  Medical Care, Respite Provision, Mental Health,
  Leisure, Welfare and Social support, FE/HE,
  Employment, Housing.

43
APPGA Manifesto

• Diagnosis and Family Support Autism-specific
  multi-agency diagnostic and assessment teams will
  be established in every local area, able to
  provide accurate and sensitive information on
  autism to families. There will be a clear target
  that all children with autism will be diagnosed
  by the age of five, with no more than six months
  between the time a parent first contacts a health
  professional to express concern and a confirmed
  diagnosis. Support and training services will be
  available for all carers, siblings and families
  immediately following diagnosis

44
West Midlands Identification Working Party (IWP)

• Multi-agency working party ? regional guidelines
  ? national work National Autism Plan for
  Children (2003)
• Key Underlying Principles
  for a Service for ASD

45
Services for young children with
ASDIdentifying standards for local practice
based on the National Autism Plan for Children
(NAPC) and other related guidelines
46
Services for young children with ASD

• Communication and Support for Parents
• Initial Multi-agency (diagnostic) Assessment
• Diagnosis
• Decision-making following Initial Assessment
• Multi-agency Assessment over Time
• Provision through Portage Home Visiting
• Provision within an ASD-resourced Inclusive
  Setting
• Provision within an SLD (Special School) Nursery
  Setting
• Provision within a Mainstream Nursery or Early
  Years Class
• Provision within a Private Nursery

47
Principles for educational programmes in the
early years

• Incorporate support for parents and their
  involvement in the programme (NAPC 3.2, 3.3 and
  GPG02 p18)
• Be based on an understanding of autism and the
  range of learning styles of children identified
  with an ASD (NAPC app.p90,91 and
  GPG01 3.6)
• Maximise periods of work and play alongside peers
  without ASD in line with the childs ability to
  benefit from this and to enable assessment of
  progress in communication and relationships to
  take place over time (NSF Statement 8)

48
APPGA Manifesto

• Diagnosis and Family Support Autism-specific
  multi-agency diagnostic and assessment teams will
  be established in every local area, able to
  provide accurate and sensitive information on
  autism to families. There will be a clear target
  that all children with autism will be diagnosed
  by the age of five, with no more than six months
  between the time a parent first contacts a health
  professional to express concern and a confirmed
  diagnosis. Support and training services will be
  available for all carers, siblings and families
  immediately following diagnosis

49
APPGA Manifesto

• Welfare Support Autism will be explicitly
  designated as eligible for all appropriate
  disability benefits, including those pertaining
  to mobility, personal care, housing support and
  independent living. Information on the range of
  benefit and entitlements will be offered to
  families affected by autism at the point of
  diagnosis

50
Contents

• Section 1 Introduction
• Section 2 What is an ASD?
• Section 3 Professionals Involved
• Section 4 Approaches to ASD
• Section 5 Who Can Help
• Section 6 Living Together at Home
• Section 7 Your Childs Education
• Section 8 Transitions
• Section 9 Training
• Section 10 Publications and Websites
• Section 11 Information Leaflets

51
Contents and design

• Sections are different colours
• Loose leaf
• Folder design
• Space for other national and local leaflets
• NAS
• autism.west midlands
• Afasic
• Midlands SEN Mediation Service
• SEN Regional Partnerships
• Code of Practice Quick Guide

52
APPGA Manifesto

• Early Intervention, primary and secondary
  education All children receiving a diagnosis of
  an autism spectrum disorder will be offered a
  prompt and appropriate early intervention
  programme based on best available evidence

53
Framework for Successful Early Interventions

• A regional framework has been created that local
  services can use to evaluate provision of
  interventions in the early years for children
  with ASDs

54
Framework for Successful Early Interventions

• Framework acknowledges the importance of allowing
  scope for flexibility and the ability to meet
  diverse needs when developing provision

55
Framework for Successful Early Interventions

56
APPGA Manifesto

• Training there will be a statutory requirement
  that all professionals or auxiliary staff working
  with people with autism will have received autism
  awareness and job specific training in autism
  prior to commencing their employment. All
  professionals working in the health, social care,
  education and criminal justice sectors will
  receive autism awareness and job-specific
  training in autism as part of their continuing
  professional development

57
Staff Training and Expertise is a vital key to
inclusion
58
Regional ASD Training

• FREDA
• Forum for Regional Education Development Autism
• A multi-agency regional Training Steering Group
  set up to follow the recommendations from the
  National Autism Plan for Children

59
Regional ASD Training

• Two sub groups of
• FREDA
• Policy/protocol
  Content
• Regional Policy Training
  Framework

60
Regional ASD Training Protocol

• The Forum for Regional Education Development
  Autism upholds a vision in which high quality
  multi-agency training in ASD is available to
  everyone in the region, is supported by Local
  Authority funding and is designed to meet the
  diverse and changing needs of the full range of
  universal and specialist services and all their
  users

61
Regional ASD Training Protocol Examples of the
Key Principles

• Recognises the evolving and dynamic nature of
  childrens and families needs over time and
  provides a diversity of training content and
  methods
• Involves children/young people with ASD in its
  development and/or presentation
• Is developed to encourage common understanding
  and information sharing by bringing together
  agencies, organisations and/or individuals for
  joint training

62
Regional ASD Training Framework

• No one regional training package but core
  competencies/minimum standards suggested at 4
  levels
• Pre-Foundation
• Foundation
• Core
• Extension

63
Regional ASD Core Competencies

• 4 levels
• Pre-Foundation
• Knowledge Skills
• Foundation / Autism Awareness
• Knowledge Skills
• Core
• Knowledge Skills
• Extension
• Knowledge Skills

64
Regional ASD Core Competencies

• Pre-Foundation
• Knowledge Skills Task/Activities

65
Regional ASD Core Competencies

• Pre-Foundation level
• Public awareness in public areas
• (e.g. Shop Assistants)
• PRACTICE
• Stop and think valuing diversity
• Dont exhibit a negative response to behaviour
• Alternative ask what can I do to help?
• Ask for help

66
Regional ASD Core Competencies

• Pre-Foundation level
• Public awareness in public areas
• (e.g. Shop Assistants)
• PRACTICE
• A named team with more information about SEN for
  each shift
• Designated space a chill out zone

67
Regional ASD Core Competencies

• Pre-Foundation level
• Public awareness in public areas
• (e.g. Shop Assistants)
• TASK/ACTIVITIES
• Sticker for side of shop till -
• Perhaps I am not being naughty,
• Perhaps I am frightened.

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Regional ASD Core Competencies

• TASK/ACTIVITIES
• Information cards
• Because I can speak well, doesnt mean that I
  understand
• If I say or do something that offends you, please
  tell me and be tolerant
• Give me time and slow down
• Link to customer service and competitive
  advantage - kite mark for training

69
Regional ASD Core Competencies

• Foundation Level
• Includes headings such as
• Key Features of ASDs
• Implications of ASDs for living and working with
  individuals with ASDs
• Development of communication
• Understanding, involving and informing
  parents/carers
• Current interventions in ASDs
• Creating effective environments for individuals
  with ASDs

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Regional ASD Core Competencies

• Foundation Level
• Analysis of key components into
• Knowledge
• Skills
• Numbered sections like National Curriculum ?
  Regional Framework for Training

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Regional ASD Core Competencies

• Foundation Level
• Topic 1 Key features of ASDs
• F1 K1 Knowledge
• Knows that children develop autism spectrum
  disorders within the first 3 years of life, but
  that these are often not identified and diagnosed
  until later, or not at all.
• F1 S1 Skills
• Is able to list the early signs of an ASD in a
  child under five.

72
Regional ASD Core Competencies

• Foundation Level Topic 2
• Implications of ASDs for living and working with
  individuals with ASDs
• F2 K1 Knowledge
• Knows that an ASD affects many areas of
  development and functioning and so the
  individuals needs in all settings and all
  contexts need to be ascertained.
• F2 S1 Skills
• Is able to identify which situations in his/her
  own practice would be useful to assess to
  contribute to a diagnostic assessment.

73
Regional ASD Core Competencies

• Extension Level Topic 2
• Missed diagnosis and misdiagnosis in ASD
• E2 K1 Knowledge
• Knows of case study material to illustrate
  situations where individuals with ASD have been
  misdiagnosed with a different condition or have
  not been diagnosed until late childhood or
  adulthood
• E2 S1 Skills
• Is able to list the factors which might lead to
  misdiagnosis or to professionals not recognising
  ASD

74
Local Developments

• Warwickshires CD-ROM
• Birminghams DVD