East Sussex Autism Partnership Board - Martin Hayles Assistant Director, Adult Social Care and Health - adult social care template
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East Sussex Autism Partnership Board Friday 31st March 2017 Martin Hayles Assistant Director, Adult Social Care and Health
• Minutes of last meeting:
Thursday 20 October 2016
• Matters arising
• Key updates and information.
2
Feedback from Self-Advocates
March 2017
3
Focus:
• Post Diagnosis support for Adults
• Employment and Training
4
Post Diagnosis Support for Adults
• Feedback from individuals attending advice
sessions and our online support service
• An increased number of individuals who have
been diagnosed later in life are attending the
sessions
• Diagnosis process has become quicker
• Travelling to Brighton for assessment
5
• Limited post diagnosis support – sign posting,
appropriate services, social care assessments
• Autism aware mental health professionals
• Joint working with Sussex Partnership and
mental health services – Autism Awareness
training
6
Employment and Training
• Feedback from self advocates who are
accessing supported enterprise projects or
who are volunteering at our shops
• Volunteers: reduction in anxiety, more
comfortable in talking about their Autism,
improve confidence, Pathway to Employment
for some
• Enterprise projects: learning new skills, part of
a social enterprise, a sense of wellbeing,
meaning, and a community presence
7
What works well?
• Self Advocates fed back that:
Having additional support staff to work with them
helped
Autism friendly strategies such as visual supports,
task lists, and factual language helped
Being able to talk to people who understood about
Autism increased confidence
Being part of something that wasn’t tokenistic made
them feel valued
Having meaningful activities increased wellbeing
8
Feeling Valued!
9
Doing something meaningful and
increasing wellbeing!
10World Autism Awareness Day 11
Whole Family Working in East Sussex 2017/18
Identifying & supporting
young carers and their
families Personal Budgets
Cross-organisational multi-- 50+ YC: support cost towards
professional reference groups ‘Think Family’ across educational /leisure activities
> developing practice the local authority, to mitigate impact of caring.
guidance to support health & key partners 150+ Families: supporting the
practitioners to meet the new An increase in whole family particularly where
legislative requirements identifying & care & support needs of the
supporting YC adult impact on their parenting
Parent carer assessments – Clear guidance for responsibilities.
joint pathway & guidance parent carer
On-line self-assessment assessments
Flexi TeleCheck for young
carers
New joint training: Integrating The challenges and next steps…
the Children and Families Act Meeting our duties for young
2014 and the Care Act 2014 people reaching transition who
into Practice – next course in do not have eligible needs as
June! children
Integrated approach to identify
carers in Primary Care, Acute &
East Sussex Young Carers a primary resource available for SPFT
assessing, supporting & advising young carers 5-18. Carers Prescription
800 + YC assessed in East Sussex in 2016/17 All health & social care teams
Young Adult carer pathway between the two service providers to think ‘Whole Family’ and to
Care for the Carers providing information, advice & support 12 take this approach in everyday
groups to YAC aged 18+ practice.13
Eastbourne
2014-PresentPartnership
14Summary
15
Sept – Oct ~Induction
Oct-June ~ Min 3 work placements
*3rd work placement can be external
Enable interns to learn the practical skills and
competencies required to successfully take
on employment roles and become more
included members of the community
Co-ordinator & 2 Job coaches
MentorsInterns
16
Other
Disability
13%
ASD
Other 47%
Difficulty
28%
14/15 15/16 16/17
ASD 3 6 6 15
GDD 2 1 1 4
Other 4 3 2 9
Difficulty
GDD
12%
Other 2 0 2 4
Disability17
Training in Systematic Instruction
TSI
Marc Gold & Dr Wolf Wolfensberger
Pioneer of the "Try Another Way" Approach Pioneer of 'Social Role Valorisation' TheoryPurpose
18
Direct & required support New level of skill
Practical work & Learning tasks carefully
independent living skills matched current abilities
‘how’ & ‘when’ to use a skill Apply skills
Recognise context & purpose Independent
Make decisions
Experience + TSI = Learning
Formulate and solve
problemsMain
19
Principles
• Learning for work is best done in a real work place,
surrounded by other working people
• When individuals are expected to succeed or
behave in a certain way, they often live up to that
expectation
• Training/learning the job is best delivered through
"natural" supports, such as a workplace mentor
• Support needs to be available to both the individual
and the natural trainer
• Responsibility for the learning rests with the trainerInstructional
20
Elements
• Facilitating the staff to develop a positive ‘teaching’
relationship with the intern
• Ensuring that the steps of a task are completed in the
same order each time, which is easier to learn
• Errorless Learning - Not trial and error. The trainer (job
coach) needs to learn the task first
• "No news is good news", natural praise and reward
• Job Coach fades when the task is learnt, so individual
can take responsibility for completion.
• Always taking the lead from the working environmentTools
21
Discovery and Vocational
Profiling
Employment Planning
Job Analysis
Phase problem solving
sequence
Data CollectionTSI leads
22
to
Systematic Instruction Work Placement
For acquiring skills For applying skills
Activity/task at instructional level Activity/task at independent level
Coach/mentor directs the interns work Coach/mentor guides the interns work
Intern follows instruction Intern chooses from alternatives
Intrinsic motivation characterises the work
Extrinsic motivation may be important
particularly
Coach/mentor addresses interns
Coach/mentor builds on interns proficiencies
deficiencies
instructs gives guidance
prescribes suggests alternatives
Coach/Mentor
directs observes, listens, questions
encourages effort encourages ideas
is as yet incapable is capable, proficient
follows instructions practices skills unaided
acts with help acts independently
Intern
is uncertain about ability is confident about ability
accepts teacher’s evaluation judges own success
works alone often consults, collaboratesAny Questions?
23Interns 2014/15
24
ESHT External
9. McDonalds Maresfield – crew member
1. Decon/HSDU – Macaulay
Andrew
2. CCU Housekeeping –
Roshanne
3. Folkington Ward – Dan
4. Post – Toby
5. Apex Way Records – Oscar
10. Liam- continues experience with
6. HK Friston Ward – Gemma Brighton FM
7. Bookings Office (bureau) –
11. Adam – ESHT Laundry volunteer,
Alex DofE
8. Clinical Orderly Berwick 81%
Ward- JoeInterns 2015/16
25
ESHT External
6. Primark Eastbourne- sales Louise
1. Portering – Luke.S
7. St Georges Hospital London-Porter
2. Michelham Ward-
Louis
Outpatients Reception Sam
8. McDonalds Newhaven – Crew
3. Apex Way Records –
Member Seb
Clinical Coding Admin Andy
9. Wickes Hailsham Luke.D
4. Bureau housekeeping –
10. East Sussex County Council
Mitchell
Apprenticeship Business
5. Bureau housekeeping -
Administration and Customer Services
Shannon 100%
x2 Hamish & Louise26
EMPLOYMENT OUTCOMES
ESHT External Not employed
10%
33%
57%Department
27
Involvement
AREAS
Cleaning
13%
39 ESHT DEPARTMENTS
Adminstration
46%
Hospitality
18%
Practical
46%
Administration
54%
Stores
13%
Customer
Service
10%DECON
7 7
POST
6
PATHOLOGY
PORTERING
LAUNDRY
5 5 5
HEALTH RECORDS
4
CATERING
PATIENT EXP
OCCUPATIONAL THERAPY
MAINTENANCE RESIDENCE
3 3 3 3
INFORMATION DESK
HK SOVEREIGN WARD
HK LITTLINGTON WARD
HK RESIDENTIAL
2 2 2 2
FRIENDS SHOP
HK BERWICK
BUFFER
PHARMACY ADMIN
CLINICAL CODING
LEARNING & DEV
STAFF…
HUMAN RESOURCES
HEALTH SCIENCE LIBRARY
EAST DEAN WARD CLERK
QUALITY SERVICES
WASTE DISPOSAL
OUTPATIENT RECEPTION
Involvement
INFORMATION GOVERNANCE
MAIN STORES
DIETICIANS
MICHELHAM WARD
INFECTION CONTROL
PAEDIATRIC AUDIOLOGY
PODIATRY
EQUIPMENT LIBRARY
Departments Rotation
CLINICAL ADMIN
RESPIRATORY
RADIOLOGY
28
1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
HOPSITAL MAINTENANCECoffee break
29Children’s Services,
Education and Autism
Autism Partnership Board
31st March 2017
30Updates on:
What are the Processes for Diagnosis? Update on the ASD Pathway Review
Beth Armstrong, Intervention and Support Manager, ISEND
Overview of Support Services – How are they Delivered and what are the Aims?
Allison Marsden, Coordinator, Communication, Learning and ASD Support Service
How Schools Work to Support Children with Autism Spectrum Disorders
SENCO, The Haven VA CE Methodist Primary School
A Parent’s Perspective
Eleanor Stanley, Parent Secretary and Communications Officer, iContact
Emily Sanders, iContact Chair and Education Officer
What do we need to consider around Transition between Children’s Services
and Adult Services?
Beth Armstrong, Intervention and Support Manager, ISEND
31What are the Processes
for Diagnosis?
Update on the ASD Pathway
Review
Beth Armstrong, Intervention and Support Manager,
ISEND
32ASD Pathway Review
How does the pathway work currently?
• The Multi Agency Referral and Diagnostic Assessment pathway is a route to assessment and
possible diagnosis for children where Autism spectrum disorder is being considered. The
pathway was last revised in February 2016 when key stakeholders discussed the existing
documents and agreements.
• Currently referrals into the pathway originate from General Practitioner (GP) consultations,
Educational psychologists and Early Years teachers. Information gathered is reviewed by
Paediatricians. Paediatricians are the lead professionals, they feel this is the correct route
although this is acknowledged as resource intense.
• The pathway divides into children of pre 11 years who are seen in multi-disciplinary clinics
involving paediatrics and speech and language therapists with input from the educational
psychology service. Children over 11 years of age have a separate pathway delivered through
CAMHS.
• There is currently capacity for 120 jointly undertaken ADOS (Autistic Diagnostic Observation
Schedule; a semi-structured assessment of communication, social interaction and play). This
assessment is undertaken in clinical settings by CITS, and in education settings by Educational
Psychologists, and primarily relates to children where ASD is not a primary presentation.
Where autism is clearly apparent ADOS would not be required, those children are referred
through for a full language assessment.
33ASD Pathway Review
Who is reviewing the pathway?
Short-life working group with representation from:
ISEND Strategic Manager and Children’s Commissioner
ISEND Intervention and Support Manager (Chair)
ISEND Senior Coordinator, Specialist Support
ISEND Senior Educational Psychologist
Joint Commissioner Children and Young people
Consultant Paediatricians, representing all CCG’s
Designated Medical Officer
Consultant Child and Adolescent Psychiatrist
Acting Service Manager, CAMHS
Head of Children’s Integrated Therapy Service, CITS
Speech and Language Lead Therapist, CITS
Occupational Therapy Lead, CITS
ASD specialist Nurse
34ASD Pathway Review
The group are reviewing whether
all children in East Sussex have
equal access to the pathway, and a
consistent journey through the
pathway that will lead to the best
outcomes.
35ASD Pathway Review
Why was the pathway set up initially?
• For assessment and diagnosis through a multidisciplinary route
• To achieve a level of consistency across the Local Authority
• For children to get the right support in school and at home
• Clarity for parents and for all stakeholders to understand the
steps
• To prevent the scattergun approach to assessment
• Previously there was poor recognition of ASD difficulties, a
pathway provides information and the right support at the right
time
• To review data trends, provision and value for money
36ASD Pathway Review
What is working well?
• Joins up health and education - useful for parents and schools
• Stronger multi-agency working and understanding of children
coming through
• Focussed on a pathway to an outcome
• Agreed to be a more efficient model
• Diagnosis is more reliable and more robust
• ADOS assessments
• The level of expertise and understanding
37ASD Pathway Review What is working less well? • Inconsistent practice across schools • GPs do not always receive all the information • Parents are not always supported to understand the diagnosis • Joint working/assessment could be further improved • Multidisciplinary form – needs updating • Need the right support in school and home for all cases • Outcomes and goals for individuals are not always clear • Pressure on the system of families paying for private reports • Understanding around the role of services • Unintended consequences of the pathway 38
ASD Pathway Review
So what are we doing?
Three main areas of focus have been agreed for the
pathway review:
• Joined up services to improve child and parental
experience
• Consistent messages, training and expectations
• Provision post diagnosis
Data underpins all these areas
39ASD Pathway Review
The meetings so far…
• The group have used the Family Friendly Framework document
to collate and discuss current practice and provision across
ISEND support services, paediatricians, CITS, and public health
• It has been agreed that the current pathway document ‘has had
it’s day’ and what is required is good, accessible information for
parents, plus something to enable a multi-agency team to
understand what the package looks like and who is doing what
40ASD Pathway Review
The meetings so far…
• Post-diagnostic support has been collated and is being discussed
• The group are creating a template to collect accurate and relevant
data
• Co-production - parents have joined the group to give the parental
perspective and to take questions back to parent groups
• The group discussed the various different phrases in current use e.g.
ASD, ASC etc. The consensus amongst the group was ‘Autism
Spectrum Assessment Pathway’ was the preferred terminology and to
not use the word ‘disorder’.
41ASD Pathway Review
Next steps…
• There are 2 meetings left for this short life pathway review
group
• It is proposed that the group then becomes the multi-agency
ASD group, who will be tasked with ongoing review of the
pathway, provision, data and parental experience
• This group would meet 4 times a year and report to the SEND
Governance and Commissioning Group
42Opportunity for
questions
43How Schools Work to
Support Children with ASD
Allison Marsden, Coordinator of the
Communication, Learning and Autism Support
Service (CLASS)
44ISEND CLASS
Communication, Learning and Autism Support
Service
• Advisory teachers and practitioners
• County-wide school based service
• Specific learning difficulties, language and
communication difficulties and autism
• Joint working with other services such as the
Education Support Behaviour and Attendance
Service (ESBAS)
45Range of EYs Provision
• Early Years Settings – supported by
the ISEND Early Years Service
• Joint transition to school support
with ISEND services
46Range of Primary Provision • Mainstream Primary Schools – supported by ISEND services and outreach and accessed by via the Front Door referral process • Mainstream primary + resourced base facility –Manor School 47
Range of Secondary Provision
• Mainstream Secondary Schools – supported
by ISEND services and accessed by via the
Front Door referral process
• Mainstream secondary resourced based
facilities:
Heathfield CC UCTC
Hailsham CC
Eastbourne Academy
Bexhill High
St Leonards Academy 48Potential New Provision
• Free school in Hastings area, Flag Ship special
free school
• SABDEN academy chain new free school
• We will hear if these applications have been
successful in April 2017
49Special Schools
• Torfield School
• Saxon Mount
• The South Downs
• The Lindfield
All have current Autism Accreditation, the
kite mark of good practice from the
National Autistic Society
50Spectrum
51CLASS +
New service to build parental confidence and resilience
Coffee mornings and
advice line
Training
Home based
52Opportunity for
questions
53Autism & The
Classroom
Jo Trott
SENCO
The Haven CE / Methodist Primary School
54Inclusion Structure
Education,
Assess, Plan, Do, Review
(Communication with child and parents)
Health & Care
Plan
Multi-Agency
Involvement
Additional needs plan,
SEND register, pupil
profiles, referrals to
outside agencies, parent
Wider Internal
meetings.Support
Liaise with SAFs team, concern
form, commission skilled support
internally e.g. speech and language,
thrive.
Achievement Teams
Liaise with teams, seek advice, support to
break down into small, achievable steps,
problem solving.
Universal Entitlement
55
Provided by ALL teaching and support staff, for ALL
children.Strengths & Interests
• Use children’s strengths and interests to:
• boost their self-esteem
• raise their status in the class
• motivate them in their learning
• get to know them and build that rapport
• reward them.
56Barriers to
Learning
57Inclusive Classroom
• Use strengths & • Every day – fresh start
interests
• Seating arrangements – ‘v’ on
• High expectations the carpet
• Quality first teaching • Visuals
• Effective deployment • Structure – timetable, oops
of staff card
• Build independence • Consistency – clear
• Experience success expectations
• Modelling
58Inclusive Classroom
• Font & background • Buddy up – peer tutoring,
collaborative learning
• Generalisation of learning
• Language • Accepting and inclusive
environment – peer
• Meta-cognition (thinking awareness
about thinking)
• Alternative to
• Transitions handwriting
• Structured playground • Explicit teaching – social
• Parents stories
• Sensory aware 5960
Opportunity for
questions
61Parent’s Perspective
Eleanor Stanley, Parent Secretary and Communications Officer, iContact
Emily Sanders, iContact Chair and Education Officer
62Background
• 17%* suspended from school – 48% of them
three or more times
• Only 15% of AS adults in F/T paid employment
• 1 in 3 adults severe mental health difficulties
• People with HFA have much higher rates of
suicide, mental health issues and
unemployment, and reduced life expectancy
*all references available in full report
63Parents often perceived as:
Pushy, demanding, mollycoddling,
indulgent, over-anxious: with
issues attributed to parenting
Then issues missed such as:
• Parents’ understanding of the child’s needs
• Collaboration in devising school strategies
• Consistency across school/home
• Family pressures (work, finance, sleep,
siblings, mental health)
64Report findings
65Support
• Long diagnostic process of up to two years,
during which, little or no support.
• Post-diagnosis, services focus on supporting
the child at school academically.
• Little or no support for the family.
66Knowledge and understanding of
ASC in the school environment
• Lack of awareness and understanding of ASC.
• Noticeable difference between treatment of
classic ‘Kanners’ autism vs Asperger’s or PDA.
• Subtleties of how broad spectrum of ASC can
present often missed – most professionals
only trained to recognise more classic and
stereotypical signs.
67Diagnosis pathway and
co-ordination between services
• No clear pathway to diagnosis
• Lack of co-ordination between services leaves
many families struggling to get the help they
need.
68Life skills, social, emotional
and mental health needs
• Most support focused on academic issues;
social and emotional difficulties often ignored
• Profound impact on long-term coping skills,
life chances and future happiness, as well as
employment prospects.
• Often seen as parents’/carers’ responsibility.
Need to be taught at earliest opportunity in
the same way as you would teach any
academic subject by specialist practitioners.
69Provision for and understanding
of high-functioning autism
• Children diagnosed with HF autism often
perceived as ‘mildly’ autistic or needing minor
support, especially those without an EHCP and
additional learning difficulties.
• But evidence of great need for this group – to
meet present needs of whole child (social
emotional, academic).
• Preventative rather than reacting to crisis.
70Parent/carer voice
• Culture of dismissing parents’/carers views and
experience.
• Lack of platform for parents to feed back.
• Parents often understand best the effects and
triggers.
• Parents as experts.
• Crucial to recognise value of parental input, and
good communication between parents and
professionals.
Parents are an untapped resource!
71So, what’s changed?
72Progress to date (since Oct 2016)
• ESCC iSEND – providing parent voice, coproducing
materials, helping develop new autism website
• CLASS – provided training session within teacher training
day, running drop-in surgery at support groups
• Spectrum – highlighted the need for young people
support in Lewes: funding received, starting this summer.
• CITS – developing programme of parent training
• ESCC/health services – providing parent voice for ASC
diagnosis pathway and helping review against NICE.
• Westminster Autism Commission for national change.
73Media coverage
• Two articles in the Sussex Express ‘Families hopeful
after publication of autism survey’ and ‘Autism
support group’s work could provide “template” for
MP’
• Radio interview, local radio station Rocket FM
• Articles Learning Disability Today, Healthwatch East
Sussex newsletter, ESCC Information for Families
• Social media mentions and shares, including the
Centre for Research in Autism and Education at UCL,
MH Autism at Coventry University,
• Findings cited in NAS report ‘Perceived support
levels’
74There is still much to do…
A change of ethos and approach costs nothing
but can make the world of difference to
parent/carers and their children.
75Why is the parents’ perspective so
important?
76‘What we can sometimes fail to understand is
that these parents, who present as overanxious,
fussy, pushy, maybe even confrontational – a
nightmare, in fact – the ones we wish would just
go home at the end of the day, are not a
problem. That actually, these parents are fully
engaged with their child’s education.’
Times Educational Supplement, 28 May 2016
77Stay in touch!
Web www.icontactautism.org/news
Mail info@icontactautism.org
Twitter@iContact_Autism
www.facebook.com/pg/iContactAutism
78Opportunity for
questions
79One last thought…
The Pathway review group are looking
at transition in a future meeting.
What do we need to consider around
transition between Children’s Services
and Adult Services for children with
Autism?
80Any other business Martin Hayles Assistant Director, Adult Social Care and Health
Next meeting
Thursday 13 July 2017
10am to 12.30pm
Eastbourne Sovereign Harbour Yacht Club
Autism2@eastsussex.gov.uk
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