Wednesday, 9 October 2013
Central Hall Westminster, London
Welcome and Introduction
John Phillipson
Chair of Autism Alliance UK
CEO of North East Autism Society
Autism and me: An interview with Scott James
Scott James
Singer, campaigner and person with autism
Making it real: Living with autism
Video feedback from regional focus group
Keynote and Q&A
Norman Lamb MP
Minister of State for Care and Support
Where are we now?
Challenges in translating policy into practice
Jonathan Shephard
CEO of Autism West Midlands
Adult Autism Strategy:
Where are we now?
Jonathan Shephard
Chief Executive
Autism West Midlands
Implementing the strategy: the three
phases
INACTION
TALK
ACTION
• All three are widely represented across different Local
Authorities
• It’s encouraging that there is widespread interest and
commitment
• Need to combine energies for joined-up results
Falling through the gaps
“People with autism have fallen between the cracks”
- Andy Burnham
• Biggest gap is data – autism is not routinely recorded
[and see Brugha prevalence study]
• General prevalence is known to be c 1%
• Virtually no understanding of how that 1% is made up –
from high need to no need, through low or occasional
need
• Autism is often deliberately misdescribed ...
• Because of gap between Mental Health and LD
Gap between LD and Mental Health
• Autism is not a learning disability and is not a mental
health condition
• Can lead to a “pass the parcel” mentality
• Some trusts are not commissioned to provide services
for autism if there is no LD/MH issue
• Paradox that least support may be given to those with
highest chance of independence ...
• ... if they are given timely specialist support
Trusts which don’t see people with
autism unless MH/LD issues
Three main routes to being seen by such a trust are:
An appointment is
simpler
Letter from
MP which
usually works
Referral from
GP for
“depression”
Acquire a
mental health
issue and
come back
later
... Or you could display extreme challenging
behaviour in public and be referred through the
criminal justice system
Perverse incentives
• Perverse incentive for GPs to misdescribe autism
• Perverse incentive for LAs to move people from
residential to supported living, because housing benefit
will meet part of the cost
• This is the right solution for some: we should help
people down the ladder of dependency
• But if it’s the wrong solution, it breaches the United
Nations Convention on the Rights of Persons with
Disabilities
United Nations Convention on the
Rights of Persons with Disabilities
This is a treaty obligation and is “hard law”. It includes:
• Right to appropriate interventions
• Right to services to provide a good quality of life
• Obligation on UK to promote availability, knowledge
and use of assistive devices and technologies
• Opportunity to choose their place of residence and
where and with whom they live on an equal basis, and
not obliged to live in a particular living arrangement
• …. Watch this space!
Where the system fails
Diagnosis
More able children may be
diagnosed later; girls may be
diagnosed late or not at all
Assessment of needs
Often by people who do not
understand autism
Provision for needs
Often inadequate
Improvement of skills
Often neglected
Social inclusion
Often neglected
Employment opportunities
Rare
Independence of choice
Often neglected
Public understanding
More training needed
Wrong assessment of needs
• Still a major problem
• People with autism, especially if intellectually
in normal or high intellect ranges, can present
as much more practically able than they are
• May be articulate – but unable to use public
transport or tie shoelaces or cook
• Without proper training, assessors may get it
badly wrong – leading to crisis later on
Good intentions are not enough
• Autism is often counter-intuitive
• People with autism need to be understood as
individuals
• Autism takes time
• Autism takes patience
Bad intentions are worse
• Massive need to get value for money and to cut
costs – fully understood
• But there is a limit
• Anonymised example of a Local Authority
seeking to cut costs for highly challenging
individuals by 80% – leaving vulnerable people
wandering corridors with no support
• No reputable provider would take this on
We don’t want more Winterbournes
• Really important for commissioning to be on value not
on lowest cost procurement
• There has to be a relationship of trust between
commissioners and specialist providers
• As providers, we should aim for lower dependency,
increasing independence, and lower cost, and should be
working with commissioners to achieve this
• Autism provision has to be dynamic and aspirational,
not a “benign prison”
• Winterbourne must not lead to over-emphasis on risk
avoidance at the expense of individual independence
Good practice: Walsall
• Has set up a low-cost innovative befriending service for
30 adults: c £1.5k per adult per year
• Aim is to involve people in community and local
services, and to reduce social isolation
• (too many young adults spend 19 hours a day in their
rooms)
• Aim is also to improve learning and development of
social skills in a natural setting
• Focus is on preventative services
Good practice: SPARC
• Has set up a low-cost innovative befriending service for
30 adults: c £1.5k per adult per year
• Collaborative project between leading clinicians;
University of Birmingham; Autism West Midlands
• No staff; overheads of virtually nil; some clinicians
providing services pro bono
• Grant from Birmingham City Council for “surround”
advice, support and signposting
• SPARC is working with 4 LAs, with two more on the way
• Example of imaginative co-operation
Individual Differences Questionnaire [idQ]
© Rachel Golding (2012)
Those who describe themselves as neurotypical have profiles like
these:
The coloured boxes are usually well to the left of the mid line
People with a diagnosis on the autism spectrum have profiles like
these:
The coloured boxes are usually over the mid line for at least 5
categories
www.idq.me
Good practice: Birmingham
• Involved in the SPARC project
• Joint Strategic Needs Assessment has a good handle on
numbers – predicting future demand
• Interested in a befriending project
• Funds support groups
• Plans to run a joint awareness campaign – posters on
buses; local radio
• None of this costs a lot of money ...
Getting the best value
Help into
employment
Promoting economic independence and self –value
Training of
front line staff
Job centres; GP surgeries; police; checkout staff
Specialist
training
GPs (high need); custody sergeants; Metropolitan police
e-crime unit; community nurses; needs assessors
Befriending
services
Low-cost intervention to guard against social
isolation
Case
coordinators
Joined-up bureaucracy, and life-event
interventions
Co-operation and sharing
• Hugely dynamic environment
• Lots of research into the causes of autism
• Considerable technological innovation
• Massive amounts of data about what works in practice
from the Alliance charities
• Understanding is increasing all the time
• And yet knowledge is not adequately shared
• We have to get to a better understanding of what
works, and of how we can improve the lives of the
people we support, using the latest knowledge
Co-operation: EU-AIMS
• Exciting cross-border co-operation between academics
and drug companies, with EU funding, led by King’s
College London
• Unsurprisingly, there is a concentration on development
of drugs
• That is part of the story, but drug-free expansion of
social engagement and life opportunities is also
important
Unconnected circles ...
Academics
Policymakers
Economists
Specialist
providers
Technologists
... even among academics
Educationists
Psychiatrists
Psychologists
Demographers
Pharmacologists
We can do better than this
UK can be a world leader in autism
• We need the energising collision of ideas from all
sources – academia, technology, practice
• We have some of the world’s best:
– Academic specialists in autism (and more world class
universities than anywhere outside the USA)
– Psychiatrists and psychologists
– Technological innovators
– Economists
– Specialist providers of autism services
What we now know
• People with autism can continue to learn, probably
throughout life. They are not “stuck”
• Brain plasticity remains and may increase by training
• People with autism can learn by analogy – i.e. can
transfer trained skills to a different environment
• Social skills can be learned; social relationships open
the door to learning and life skills
• Independence can increase
• Investment in specialist interventions works
• It is never too late to start
Using assistive technology
• Potentially massive improvements in independence and
in quality of life; plus large reductions in cost
• Computer-assisted learning – computers don’t get tired,
and don’t have puzzling faces
• Smart phones can give prompts in a predictable and
user-controlled way [43 steps to making toast]
• For some people it allows them to cook independently;
for others it allows them to travel independently on
public transport – without expensive 1:1 support
• The possibilities are endless
• And they meet our treaty obligation under UNCRPD
Don’t ignore specialist providers
• Many autism studies are small-scale and lab-based
• People with autism don’t live in laboratories
• Alliance charities support many thousands of adults
with autism, and have a practical understanding of
what works
• On its own, this is not enough
• We need to be open to new ideas; new research; new
assistive techniques
• We need a bridge between academia, practitioners,
economists, technologists, policymakers and, above all,
people with autism and their families
Final messages
Don’t focus
on deficits,
focus on
aspirations
Concentrate
on what
works in
practice
Involve
people with
autism and
their
families
… and if we do all of this …
Share
information
Co-operate
Learn from
each other
We can be world class
Awareness, Understanding and Training
Jackie Edwards Parent and Family Carer
Nigel Archer Criminal Justice Sector Lead for Autism West Midlands and
Advisor to the Department of Health
Jackie Edwards: A Parent’s Perspective
•
•
•
•
•
•
•
•
Autism & Asperger Syndrome
Strengths and weaknesses
Social / Learning Disabilities
Complex high support needs
Behaviour described as Challenging
Mental health
Sensory sensitivities
Communication (including movements)
Partnerships & Collaboration
•
•
•
•
Family carers provide continuity and a history
Family carers often see subtle communication
Computer and paper files may be limited
Working together to gather good quality &
Person Centred information
• Better outcomes for individuals
• Work / Health / Education / Housing /Support
• Clear & Consistent Pathways – Diagnosis
ASC & the Criminal Justice
System
The issues and potential solutions
Why people with an ASC may become
Suspects
• Offences relating to social naivety.
• People with ASC often adhere rigidly to rules and may
become extremely agitated if other people break rules.
• Offences relating to a misunderstanding of social cues
• Preoccupations with topics, objects, people Special
Interests
• Offences of an aggressive nature, which are often
related to an unexpected change in routine or to the
environment, which may cause great anxiety and
distress.
Issues
• Custody
• Police Suspect Interviews
• CPS
• Courts
• Probation / YOS / Prisons
What is needed?
• Tiered autism specific training
• Specific ASC marker on IT systems
• Simple guidance for operational staff to
complement training
• Evaluation / Screening at police custody
• Referral pathways – specialist services
Benefits of police training
• 86.9% of respondents felt that the training had proved
useful in dealing with a person with autism and enabled
them to adjust their methods for the benefit of all
parties
• In 52.9% of cases where the person with autism was an
offender ‘no further action’ was taken against them
due, in part, to recognition of the impact of their
autism on their behaviours.
• Another 14.7% of suspects were referred to other
services such as CAMHs or Social Services instead of
processing as an offender
Financial Benefits?
• No exact figures nationally but in 2012 – 5.5% of
prisoners in Birmingham Prison had or were suspected
to have an ASC (80 individuals)
• Potential savings to the CJS ranging from £13,000 to
£106,000 per individual as follows:
– £13,000 per crime investigated (Social Exclusion Unit figure
2002)
– Average 5 x offences prior to imprisonment (£65,000)
– £41,000 per year prison costs (‘The Learning Prison’ report)
Figures from ‘Adults with Autism and the Criminal Justice System’ a report from
Birmingham City Council Health and Social Care Overview and Scrutiny Committee
published December 2012
Morning Break
Refreshment provided in the Westminster Lounge
Morning Break
Refreshment provided in the Westminster Lounge
Experiences of Diagnosis and Assessment
Video feedback from people with autism
Beyond Diagnosis: The Challenge of Assessment
Charlene Tait
Development Director, Scottish Autism
Beyond Diagnosis:
The Challenge of Assessment
Charlene Tait
Director of Development
Charlene.tait@scottishautism.org
Purpose of Assessment
• Suitability of placement
• Identifying support needs
• Selecting appropriate teaching & learning
approaches
• Measuring progress over time
Purpose of Assessment
• Suitability of placement
• Identifying support needs
• Selecting appropriate teaching & learning
approaches
• Measuring progress over time
Areas of Potential Relevance
•
•
•
•
•
•
•
•
•
•
•
Social Communication
Social Interaction
Flexibility
Cognition
Working memory
Sensory Processing
Quality of life
Skills for independence
Adaptive behaviour
Risk
Well being
The Challenge
• Tools
• Reliability
• Accessibility and training
• Cost
Tools – Issues & Challenges
(Aitken, K. 2013)
• Review of 63 tools and techniques
relevant to assessment
• 40 ( 63%) require a degree of training or
use is restricted to specific professional
discipline
• Range in cost from no charge up to £1096
• Some not commercially available
• Some with on costs for materials/score
sheets etc
Summary
• Strategic focus on diagnosis
• Need for specialism in diagnosis is
recognised but what comes next in terms
of identifying and responding to a
complex range of needs and contexts?
• Assessment and its relevance to evidence
based practice and measurable outcomes
Improvising access to the appropriate services: The
commissioning landscape post-Winterbourne
Chris Bull
Learning Disability Improvement Lead, Winterbourne Review
Lunch
A sandwich buffet is provided in the Westminster Lounge
Transition and Employment
Steven Philp Weston College student and person with autism
Joanne Gumbrell Aspire Employment Service Manager, Autism West Midlands
The employment catalyst
Work
vs.
Unemployment
- Independent finances
- Low income / struggling
- Quality of life
- Isolation
- Social opportunities
- Inactivity
- Routine / structure
- Too much time
- Positive activity
- Loss of skills / abilities
- Utilising skills
- Feeling ‘unimportant’
- Having a purpose
- Impact on mental health
The route to employment
Increase
employability
MOTIVATION
Achievable job
goals
Reduce
barriers
Anxiety
Communication
Opportunity
Sustainability
Work trials
Early stage
intensive
support
Apprenticeships
Competition
Work Choice
Ongoing
mentoring
Experience
Recruitment
processes
Work
Programmes
Access to Work
Employable
qualities
Employer
awareness
Employer
incentives
Basic Skills
Qualifications
Work Choice
Discussion workshops
Refreshment will be available at workshop venues
The case for pooled budgets
Professor Martin Knapp
Director, School for Social Care Research, London School of Economics
London
9 October 2013
The case for
pooled budgets?
Martin Knapp
PSSRU, London School of Economics
King’s College London, Institute of Psychiatry
NIHR School for Social Care Research
63
Multiple
needs and
impacts
Many causes; widespread impacts
Genes
Health care
Family
Social care
Income
Housing
Emply’t
Resilience
Trauma
Phys env
People
with
autism
Needs &
aspirations
Education
Crim justice
Benefits
Employment
Events
Social netw
Chance
Income
Each of these links is evidence-based
Mortality
…on many different budgets (England)
Genes
Health care
NHS
Family
Social care
Income
Housing
LAs
CLG
Education
DfE
Crim justice
MoJ
Benefits
DWP
Employment
Firms
Events
Social netw
CVOs
Chance
Income
Indiv
Mortality
All
Emply’t
Resilience
Trauma
Phys env
People
with
autism
Needs &
aspirations
Each of these links is evidence-based
Adults with autism and intellectual
disability: how the costs break down
NB Family100000
impacts are under-estimated
Treatment
Emp indiv
Emp parents
75000
Family
Emp supp
50000
Adult ed
Day care
25000
Respite
Other HPSS
Hospital
Accomm
0
Priv HH
Supp P
Res
care
Hospital
Average cost for a child aged 4-11
with or without intellectual disability
Risks …
• Silo budgeting
• Focus on own KPIs
• People ‘fall through the
cracks’
• Service duplication
Tight budgets
exacerbate some of
these risks
• Short-termism
• Statutory obligations
• Accountability and
public scrutiny
Risks … and responses
• Silo budgeting
• Focus on own KPIs
• People ‘fall through the
cracks’
• Service duplication
Tight budgets
exacerbate some of
these risks
• Short-termism
• Statutory obligations
• Accountability and
public scrutiny
• Co-located teams
• Multi-disciplinary
teams
• Joint planning
• Joint commissioning
• Cross-charging
• Organisational
mergers
• Budgets devolved /
pooled to teams
• Budgets devolved /
pooled to individuals
The 2010
Strategy
Para 1.34
Above all, the key to enabling adults with autism to play
a fuller part in their communities lies in effective local
services and support. Therefore the fifth strand of our
strategy is to build capacity and capability at local level
to enable local partners to develop relevant services for
adults with autism to meet identified needs and priorities,
learning from what already works and involving adults
with autism in developing those services where
appropriate. This should include consideration of the
approach embodied in Total Place initiatives in breaking
down the barriers between different services and
increasing the use of pooled budgets to better meet
the needs of the whole community.
Pooled
budgets
Pooled budgets – pros
o Interdependencies
o Transparency
o Accountability
o Duplication
o ‘Falling through the net’
o Complex care and support needs
o Flexibility in spending
o Access to resources
o Out-of-area placements
Pooled budgets – cons
o Transactions costs (admin, legal etc)
o Confusion over reporting, governance
o Accountability constraints
o Takes time to see benefits; but destabilising
o No efficiency gains
o Hard to manage short-term funds
o Ring-fencing reduces flexibility
o Needs ownership
Barriers to integration more generally
o
Structural – fragmentation of service responsibilities,
inter-organisational complexity
o
Procedural – differences in planning / budgetary
horizons, cycles and priorities
o
Financial – differences in funding routes and
mechanisms; differences in incentives
o
Professional – differences in ideologies, values, selfinterest; perceived threats to autonomy, domain and job
security; conflicting views about (e.g.) user empowerment
o
Status and legitimacy – differences between
professionals, elected and appointed agencies … leading to
asymmetries of legitimacy and accountability
Thank you
m.knapp@lse.ac.uk
78
Panel discussion & Q&A
Jon Rouse
Stephen Kingdom
Hugh Pullinger
Zandrea Stewart
Director General, Social Care,
Local Government and Care
Partnerships
Department of Health
Deputy Director, Special
Educational Needs
Department for Education
Deputy Director for the Office of
Disability Issues
Department for Work & Pensions
National Autism ADASS Lead
Association of Directors of Adult
Social Services
Key Priorities
Zandrea Stewart
ADASS
• Contribute to the Adult Autism Strategy Evaluation and
help consider the next steps
• Work with our NHS Commissioning partners (CCG) to
consider the needs of people with Autism in their local
areas.
• Work with local communities, raise awareness &
promote equal opportunities for a fulfilling and
rewarding life.
• Access the right personalised support at the right time
Conference closes
John Phillipson
Chair of Autism Alliance UK
CEO of North East Autism Society