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Enfield Joint Commissioning
Strategy for Adults with Autism
2013-2018
www.enfield.gov.uk
www.enfieldccg.nhs.uk
Enfield Clinical Commissioning Group
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Adult Social Care Commissioning Team Health, Housing and Adult Social Care April 2013
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1 Contents Executive Summary 3 Section 1. Introduction 4 1.1 Aim 4 1.2 The Scope of the Strategy 4 1.3 Developing the Strategy 4 1.4 What is Autism? 4 1.5 Terminology 6 1.6 Vision for Services 6 Section 2. National and Local Guidance, Research and Best Practice 7 2.1 National Guidance and Policy Context 7 2.2 Local Context 8 2.3 Research and Best Practice 9 Section 3. Current and Future Demand 11 3.1 Population Projections and Prevalence Rates 11 3.2 Number of people with autism known to services 12 3.3 Consultation with adults with autism and their carers 12 3.4 What can we conclude about the support needs of people with autism living in Enfield? 13 Section 4. Market Analysis 14 4.1 Map of services 14 4.2 Service Quantity 15 4.3 Service Quality 15 4.4 Contracting arrangements 18 4.5 Current Funding 18 4.6 Future funding to support the implementation of the strategy 19 Section 5. Gap Analysis and Design of Future Provision 20 Section 6. Implementation and Monitoring Arrangements 25
2 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 Appendices Appendix 1. National Policy Context 26 Appendix 2. Summary of Research and Best Practice 27 Appendix 3. Needs Analysis 33 Appendix 4. Map and Description of Current Services 40 Appendix 5. Development of Autistic Champions – Case Study Examples 46 Appendix 6. Diagnostic pathway and support and appraisal of options 48 Appendix 7. Example Care Pathway 56 Appendix 8. Action Plan 2013-2018 57 Appendix 9. Terms of Reference Adult Autism Steering Group 64 Appendix 10. Abbreviations used 66 References 67
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 3
Executive Summary
• Autism is a lifelong developmental disability of existing family or carer support. The key
that affects how a person communicates with, needs of this group are around communication
and relates to, other people. The severity and and social skills as well as practical help with
presentation of difficulties can vary significantly. daily tasks such as cooking, budgeting and
navigating access to services. Without this
• This strategy meets the requirements of the support some are likely to end up requiring
Autism Act 2009 and associated statutory high cost intensive services in the future.
guidance. It sets out five key objectives:
• About 50% of those with autism are
–– Increasing awareness and understanding of considered to have HFA, with the remainder
autism. having varying degrees of learning disability. It
–– Developing a clear and consistent pathway is estimated that there are around 900 people
for diagnosis. with HFA in Enfield.
–– Improving access for adults with autism to • The number of children and young people
the services and support they need to live with a diagnosis of autism moving to adult
independently within the community. services is expected to grow by 59% between
–– Enabling local partners to develop relevant 2011 and 2016 and the strategy offers an
services for adults with autism to meet opportunity to co-ordinate and improve
identified needs and priorities. provision for this vulnerable group.
–– Helping adults with autism into work. • The strategy has been informed by local and
national research and best practice, and is
• It focuses on adults with High Functioning built upon an analysis of current and future
Autism (HFA) who have average or above need. The development was led by the
average intelligence (IQ of 70 or above). This Enfield Adult Autism Steering Group. Local
includes those with Asperger’s Syndrome. stakeholders, including users and carers have
This is because there are already services informed the development of the strategy. It
in Enfield for people who have autism and a sets out how Enfield Council, Health and a
learning disability. Whereas it is often assumed range of partners across the whole community
that those with HFA do not require services. In will develop and improve services over the
fact in reality their autism can be just as severe next 5 years within the context of severe
and disabling. With the exception of the small financial constraints.
number with high needs, the majority of people
with HFA are not eligible for mental health or • It proposes the creation of an autism team
learning disability services under the current to be the catalyst and focus for improving
interpretation of Fair Access to Care criteria. diagnosis and assessment as well as
increasing awareness and developing good
• The majority will require low level preventive practice. The autism team would help to re-
support at varying stages in their lives to align existing resources to better respond to
maximise their independence and prevent the needs of people with HFA.
mental health problems and the breakdown4 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
Section 1.
Introduction
1.1 Aim 1.3 Developing the Strategy
The draft strategy and the accompanying The strategy has been informed by local and
Implementation Plan sets out how Enfield Council national research and best practice, and is built
and its partners intend to develop services upon an analysis of current and future need.
from 2013-2018. This will begin to meet the Local stakeholders, including users and carers
aspirations within the Autism Act (2009) and have informed the development of the strategy. It
the requirements of subsequent guidance. The has been overseen by the Autism Steering Group
Autism Act (2009) and national autism strategy whose membership was revised in May 2012 to
sets out a vision that all adults with autism will be give it a more strategic focus. The Strategy has
able to live fulfilling and rewarding lives within a been built on the work originally undertaken by
society that understands and accepts them.1 The the Steering group and this helped to identify how
draft strategy is set within the context of severe services in Enfield can be developed.
resource constraints, and no additional central
government funding. This has inevitably resulted Further consultation will be carried out, and any
in modest developments and a focus on what feedback received will inform both the strategy
can be done within existing resources. and the Implementation Plan.
1.2 The Scope of the Strategy 1.4 What is Autism?
The strategy focuses on adults (over 18) in Autism is a lifelong developmental disability
Enfield who have Autism and who do not have that affects how a person communicates with,
a learning disability. The rationale for the scope and relates to, other people. The severity and
of the strategy is that people with an Autistic presentation of difficulties can vary significantly
Spectrum Condition who also have a learning and so an “Autistic Spectrum” is talked of.2
disability are assessed for social care services The word spectrum is used because, while all
through the learning disability service. A key people with autism share certain difficulties, their
issue that needs to be addressed is that young condition will affect them in different ways.
people with autism (some of whom have been
supported in childhood) are finding themselves There is still debate and confusion among
without any support when they reach 18 years clinicians and researchers over the causes,
unless they have another disability. This is either diagnosis and categories of autism. Autistic
due to not being eligible for services based on the Spectrum Conditions (ASCs) are classified
interpretation of eligibility criteria; or it is due to as developmental disabilities in the ICD-
difficulty accessing services that they are eligible 10 diagnostic manual in the same class as,
for but which do not adequately cater for the Intellectual Disabilities or Attention Deficit
needs of people on the higher functioning end of Hyperactivity Disorder,3 complex lifelong
the autistic spectrum. conditions involving “pervasive developmental
disorder.Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 5
Diagnosis of the condition is based on behaviour. Furthermore, it is common for people with autism
Clinicians have agreed that ASCs involve to have unusually high or low sensitivity in one or
difficulty in three areas, known as the “triad of more of their senses. Frequently hypersensitivity
impairments”.4 results in extreme distress and pain. It is easy
to see how these two factors result in the
• Difficulties with social communication: behaviours listed above. As a result people with
language acquisition delay, and difficulty autism often engage in obsessive, compulsive
understanding and using speech, writing, and/or, ritualistic behaviours as a way of coping.
body language, mood, gesture, and personal Naturally engagement in these behaviours can
space (e.g. language, gestures, facial result in a range of challenges for those people
expressions and tone of voice). (and organisations) supporting people with autism.
• Difficulties with social interaction: problems The severity and presentation of difficulties can
acquiring and using social skills which vary significantly and so an “Autistic Spectrum”
can result in isolation, difficulty processing is talked of.5 The word spectrum is used
emotional information, difficulty initiating social because, while all people with autism share
contact and adhering to social rules and certain difficulties, their condition will affect them
thus difficulty sustaining relationships (e.g. in different ways. Some people with autism are
recognising and understanding other people’s able to live relatively ‘unsupported’ lives and
feelings and managing their own). others need a lifetime of specialist support. While
some people with autism may not speak, or will
• Difficulties with social imagination: being have limited language skills, others have good
unable to correctly distinguish the real from language skills but have difficulty understanding.
imaginary, finding it difficult to be reflexive,
to inhibit behaviour, and to exhibit repetitive Asperger Syndrome is a form of autism. People
behaviours and obsessional interests (e.g. with Asperger Syndrome are often of average
problems in understanding and predicting or above average intelligence. They have
other people’s intentions and behaviour and fewer problems with speech but may still have
imagining situations outside their own routine). difficulties with understanding and processing
language.
The patterns of behaviour listed above are useful
for diagnosing autism but they do not tell us Diagnostic criteria are revised periodically, taking
why people with autism behave in the way they into account the most up-to-date research. One
do. To understand autism properly we need to of the proposed changes to the fifth edition of
think about some of the underlying difficulties the Diagnostic and Statistical Manual of Mental
people with autism have which may explain the Disorders (DSM-5), to be published in May
behaviours they display. 2013, would eliminate Asperger syndrome as
a separate diagnosis, and fold it under autistic
The majority of people who do not have autism disorder (autism spectrum disorder), which would
are multi-tracked/multi-attentive. This means be rated on a severity scale. This is helpful as
that they can receive and process a variety of it will streamline diagnostic criteria. However,
information from a number of senses at the same the minimum criteria for level 1 severity ‘Needs
time. However, most people with an ASC tend to Support’ are considerably higher than the
be (to a greater or lesser extent) mono-tracked. minimum criteria for diagnosis. This may result in
If you can only process one bit of information making it even harder for people with autism to
at a time it means that the speed at which you access the support they need.
process information is very slow. It also means
that you constantly miss information and never
get the full picture. As a result the world seems
confusing and unpredictable and you often
misinterpret the situations and people around
you. This often leads to feelings of anxiety,
paranoia, frustration and anger.6 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
1.5 Terminology The strategy identifies the following as being key to
people with autism experiencing good outcomes:
The literature uses a range of terms to describe
adults with autism. This report will use adults with
• The right to receive an assessment of need
autism, adults with an ASC (Autistic Spectrum
from social services.
Condition) or ASD (Autistic Spectrum Disorder).
• To get the same opportunities for education
HFA – Higher Functioning Autism will be used and further education as everyone else.
to describe people with an IQ of 70 or above.
• To be supported to get a job and stay in work.
This will include those with Asperger’s Syndrome
(AS) although in the literature this is sometimes a • To be able to choose where to live – just like
separate category. anyone else.
• To have relationships and social networks.
A glossary of abbreviations and terms used is set
out in Appendix 10. • To have their health needs properly met in a way
which is appropriate for someone with autism.
1.6 Vision for Services • To be safe from hate crime and discrimination.
Both the Human Rights Act (1998) and The • To live in a society where people understand,
Equality Act (2010) enshrine the right for every respect and accommodate difference.
person, regardless of disability, race, gender or • To receive support to live independently, as
culture to be entitled to such things as housing, appropriate.7
education, health care and freedom from
discrimination among other things. The research, both nationally and locally, indicates
that currently people with autism tend not to
The Autism Bill (2009) and subsequent strategy achieve good outcomes. The vision for services in
‘Fulfilling and rewarding lives, the strategy for Enfield is to ensure that the rights of people with
adults with autism’6 outlined the following vision autism are upheld, that the appropriate services
for adults with autism: are delivered and that people with autism start to
achieve their desired outcomes.
‘All adults with autism are able to live
fulfilling and rewarding lives within a
society that accepts and understands
them. They can get a diagnosis and
access support if they need it, and
they can depend on mainstream
public services to treat them fairly as
individuals, helping them make the most
of their talents.’Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 7
Section 2.
National and Local Guidance, Research and
Best Practice
This section firstly sets out the In June 2012 NICE set out detailed guidelines
for the recognition, referral diagnosis and
National context in terms of policy management of adults on the autistic spectrum.9
and national guidance for services This guidance recommends that each area
for adults on the autistic spectrum. should establish a specialist community-based
multidisciplinary team for adults with autism to
It then provides a summary of the have a key role in the delivery and co-ordination of:
local context including how other
local strategies impact on the • Specialist diagnostic and assessment services.
provision of services for adults with • Specialist care and interventions.
autism in Enfield. Finally, research • Advice and training to other health and social care
and best practice are discussed. professionals on the diagnosis, assessment,
care and interventions for adults with autism (as
not all may be in the care of a specialist team).
2.1 National Guidance and Policy
• Support in accessing, and maintaining contact
Context with, housing, educational and employment
The Autism Act became law in November 2009 services.
and was the first ever condition-specific piece of
legislation in England and Wales. • Support to families, partners and carers where
appropriate.
In response to the Act becoming law the • Care and interventions for adults with autism
Department of Health published a National living in specialist residential accommodation.
Strategy for Adults with Autism.8 The strategy
sets out 5 key objectives: • Training, support and consultation for staff
who care for adults with autism in residential
• Increasing awareness and understanding of and community settings.
autism.
The autism strategy should be seen as sitting
• Developing a clear and consistent pathway for alongside wider policy direction started by the
diagnosis of autism. previous government and broadly continued by
• Improving access for adults with autism to the current government in 2010 as reflected in:
the services and support they need to live
independently within the community. • Liberating the NHS: Equity and Excellence
which became enshrined in the Health and
• Enabling local partners to develop relevant Social Care Act (2012)
services for adults with autism to meet
identified needs and priorities. • The Localism Act (2011)
• Helping adults with autism into work. • A vision for adult social care: Capable
communities and active citizens (2010)
• The Equality Act (2010).8 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
The key themes running through these wider • To focus services to maximise and maintain
policy documents are: people’s health, independence and inclusion.
• To develop and maintain accessible services,
• Localism and partnership – Involving
including fully accessible premises and homes.
devolution of power and empowering
communities to have more say in how • To develop integrated community pathways
services are delivered locally. There is also and services by working in partnership and
encouragement for public sector staff to co-coordinating development and investment.
form social enterprises or employee led
• To recruit and retain a workforce that is
mutuals. Clinical Commissioning Groups will
trained, reliable and efficient across the
be given more freedom and accountability to
Council and NHS Enfield and to work with the
commission care for their local communities,
Independent and Voluntary and Community
and this perhaps represents an opportunity to
Sectors to ensure that the same is true for
get autism services on the agenda. There is
their workforce.
also an emphasis on a greater integration of
health and social care and the need to work • To focus on the quality of service provided to
in partnership with a range of stakeholders service users, carers and patients.
including the VCS.
One of the key objectives of the Enfield Joint
• Focus on outcomes – Paying more attention Strategic Needs Analysis (JSNA) is to narrow
to the impact of a service or intervention and the gap around health inequalities including life
its results has been a central theme for the expectancy.10 Autism is one of the four long-
commissioning and provision of services for a term conditions identified as a priority, along with
number of years, at strategic, operational and dementia, learning and physical disabilities.
individual levels.
Mental health remains a key priority for Enfield
• Personalisation – This is at the centre of the and the JSNA states that there is a widely held
vision to transform adult care and respond belief amongst professionals that there are poor
to the needs of individuals by giving more health outcomes for people with mild/moderate
choice and control to the consumers of mental illness, young people in transition from
services. Unless adults with autism are eligible Child and Adolescent Mental Health Services
for services and can access advocacy and (CAMHS) and for people of some black and
brokerage services, then the whole area of minority ethnic groups. Autism is not specifically
direct payments and personal and individual mentioned but forms part of the groups
budgets will have little meaning. mentioned above.
More details of the National context are set out in Although the Carer’s Strategy11, the Housing
Appendix 1. Strategy12 and the Supporting People Strategy13
do not specifically mention the needs of adults
with autism and their carers, this could be
2.2 Local Context addressed in any revision or refreshing of these
The strategy should be consistent with the seven strategies. Adults with autism should also be
key joint commissioning aims Enfield has agreed considered when the Joint Health and Wellbeing
in response to the White Paper “Our health, our Strategy is drawn up.
care, our say: a new direction for community
services”: The current development of the Voluntary and
Community Sector Strategic Commissioning
• Increase the choice and control in decision Framework offers a good opportunity to address
making over their individual services for service some of the needs of those with HFA within
users, patients and carers across the Council generic services particularly around Information,
and NHS Enfield. Advice and Guidance; Advocacy and Support;
• Increase the individual and collective influence Prevention Services; and Direct Payments
of service users, patients and carers on Brokerage.
shaping future services across the Council and
NHS Enfield.Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 9
The Council, PCT and CCG (Clinical –– Be delivered in detail for those conducting
Commissioning Group) have all agreed that the assessments, those working directly with
development of adult autism services is a shared people with autism and the managers of
priority. these people.17
–– Alter behaviour and practice among key
2.3 Research and Best Practice professionals – it isn’t enough to attend
The National Autism Strategy (2010) identified training but then carry on as before.
that outcomes for adults with autism could be –– Include input from people with autism and
improved in five main ways: their families.
• Increasing awareness and understanding of –– Cover awareness raising about Asperger’s
autism. Syndrome and high-functioning autism –
the lack of support offered to people with
• Developing a clear and consistent pathway for autism of these types means that staff may
diagnosis of autism. have less awareness and experience here,
• Improving access for adults with autism to so more needs to be done to redress the
the services and support they need to live balance.18
independently within the community.
2.3.2 Developing a clear and consistent
• Enabling local partners to develop relevant
services for adults with autism to meet pathway for diagnosis
identified needs and priorities. • Childhood prevalence studies suggest autism
occurs in approximately 1% of the population,
• Helping adults with autism into work. and that for every two known cases, there are
three undiagnosed cases that might need a
There is considerable evidence to support good
diagnosis at some point in their lives.19
practice in each of these areas. Some of the key
findings that have informed the development of • Processes should be in place for access to a
this strategy are summarised below. multidisciplinary diagnostic assessment. There
should also be appropriate post diagnostic
2.3.1 Increasing awareness and support to the individual and carers including
understanding of autism an offer of a community care and carer’s
assessment.20
• There is a need to develop the understanding
and competency of community professionals • NICE clinical guidelines on recognition, referral
working in a range of agencies so that they and diagnosis recommends that specialist
can respond appropriately to the needs of autism teams should be established in every
people with autism (SCIE, 2011).14 area.21
• It is essential that good quality training is • Statutory guidance states a lead professional
available to relevant community professionals should be appointed to develop diagnostic
and that this is ongoing and sustainable. and assessment services.22
Wherever possible, the training should be • Clear, consistent diagnostic pathways result in
accredited by an independent third party or cost savings.23
university (BPS, 2011).15
• Training is key, and should:16
–– Cover how to recognise autism, and
how to make reasonable adjustments to
accommodate people with autism.
–– Be delivered efficiently – this could mean
sharing training between organisations,
or including autism in general equalities
training, for some staff.10 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
2.3.3 Improving access for adults with 2.3.4 Enabling local partners to develop
autism to the services and support they relevant services for adults with autism to
need to live independently within the meet identified needs and priorities
community • The adult autism strategy recommends setting
• Research by the National Autistic Society up a local autism partnership board or a similar
suggests that nearly two thirds of adults with mechanism that “brings together different
autism do not have enough support to meet organisations, services and stakeholders
their needs, and one in three adults with locally and sets a clear direction for improved
autism are experiencing severe mental health services”.30
difficulties due to lack of support.24 • It is well documented that there is a lack of
• Current housing is likely to require adaptation clarity over whose responsibility it is to provide
to meet the needs of people with autism. For support for adults with autism. More effective
example, homes for people with autism often joint working between health and social care is
require consideration of sensory sensitivity to critical to improving outcomes at a local level.
certain sounds, lights, colours and smells.25 It is therefore essential an integrated planning
forum that is responsible for developing
• The characteristics associated with an ASC,
autism provision across health and social care
such as impairments in social interaction,
is developed. Such forums do not require
social imagination and social communication
additional funding to set up and they are a key
mean developing friendships and social
mechanism to addressing the need for a more
networks can be extremely difficult. However,
collaborative approach to public service where
issues of loneliness and isolation can be
agencies join up resources, both financial and
overcome with appropriate social skills training
human, to provide a more coherent response
and support. Improvement in social inclusion
to local needs.31
for adults with autism will only be achieved
if policies are successfully implemented and
society makes reasonable adjustments.26 2.3.5 Helping adults with autism into work
• Only 15% of adults with autism are in paid
• Advocacy is a vital need for people with autism
employment compared to 48% of people with
to access services.27
general disabilities. A much greater number
• People with autism are vulnerable due to their of people with autism want to work and could
social and communication difficulties, so they do so if able to access appropriate support.
have a particular need for understanding and Autism-specialist supported employment
appropriate support from the criminal justice schemes result in significantly higher rates
system.28 of employment, as well as employer and
employee satisfaction.32
• Further Education colleges should be working
towards providing effective provision for all Further information about research and best
young people. A successful and cost effective practice is provided in Appendix 2.
solution to the development of local Further
Education is a system of truly personalised
responses which create a greater chance
of people accessing further education and
remaining in their communities.29Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 11
Section 3.
Current and Future Demand
This section summarises the needs 3.1.2 Summary of prevalence estimates
analysis (further information can • 1% of adults (and children) have autism
resulting in an estimate of 1,831 adults 18-64
be found in Appendix 3). It outlines in Enfield in 2011.
the methodology that has been • The number of people aged 18-64 predicted
used in Enfield and summarises the to have autistic spectrum disorders is
findings. Research and information predicted to increase from 1,831 in 2011 to
about prevalence rates is used 1,956 in 2030.
to make population projections • There is also a marked increase (40%) in the
number of older adults aged 55-64 rising from
currently and going forward. 276 in 2011 to 388 in 2030.34 This is in line
Information about how many people with growth in the population aged 65 and
with autism are currently known to over. Assuming a 1% prevalence rate, the
services in Enfield is also described numbers aged 65 and over predicted to have
autism would rise from 388 in 2011 to 538 in
and finally details are outlined about 2030.
what people with autism and their • Of these 50% have LD and 50% have HFA (IQ
families say their needs are. of 70 or above).
• 20-33% of adults with LD have autism.
3.1 Population Projections and
• 60% of men with profound learning disabilities
Prevalence Rates and 43% of women with profound learning
3.1.1 What methodology have we used in disabilities have autism (The more profound
Enfield? the LD, the more likely they are to have autism
if assessed.).
In Enfield we have applied national prevalence
rates to local demographic information. • Of the 50% with HFA, 30% are likely to
Population growth figures have been used to experience MH difficulties.
estimate future prevalence and information • Based on an estimated prevalence of HFA
has been collected from SEN statements and (ASC and IQ ≥70) of 50% of all adults 18-64
from the recent London Council’s and MIME with autism, and the reported rate of 30%
Consulting Forecasting Project on children and experiencing a mental health problem, we
young people with autism moving on to become might expect at least 275 adults with an ASC
adults over the next few years.33 in Enfield to have a co-occurring mental health
problem such as depression or anxiety.12 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
• Men are nine times more likely to have autism 3.3 Consultation with adults with
than women (although recent research
suggests that the rate in women may be
autism and their carers
underestimated). 3.3.1 What methodology have we used in
• For the Enfield population – as at April 2010, Enfield?
the Pupil Level Annual School Census 2010 In 2009 and 2010 the Autism Steering Group
(PLASC) shows that out of the entire school organised a number of events that were jointly
population in Enfield there were 443 (0.9%) facilitated with the National Autistic Society (NAS).
pupils aged 0-19, identified as autistic via a These included three consultation workshops
Statement of Special Educational Needs or with adults with autism and their carers
School Action Plus. This figure is clearly similar (separately). There were also a small number of
to the 1% prevalence rate identified in adults. 1:1 interviews of adults with autism as well some
staff who supported individuals in a paid capacity.
• The number of children and young people
Staff involved in providing community services
with a diagnosis of autism moving to adult
that might involve adults with autism were also
services is expected to grow by 59% between
interviewed (e.g. Community Access Librarian,
2011 and 2015/16. In 2010/11 there were
Jobcentre Plus, Community Mental Health Team,
170 children aged 11-15 with a diagnosis of
Disability Support Officer Middlesex University).
autism.
They were asked a number of questions including
what reasonable adjustments their service had
3.2 Number of people with autism made to accommodate the needs of adults with
known to services autism and what issues there were.
• The Enfield council database indicates that Discussions with members of the ASG and the
73 adults with autism were known to the local NAS suggest that there is no reason to think
authority and receiving services. Of these that things have changed significantly since then
five (6.5%) were in either full or part time or that the needs of adults with autism will be
employment; 60 (80%) were living in their own substantially different from the needs that have
home or with their family and 15 (20%) were been identified regionally or nationally.
living in nursing home or residential care. A
further 22 had not received services in the
3.3.2 Summary of what adults with autism
current year but were on the database. Of
and their carers say they need
this total of 95, 19 were those with HFA. 11 of
whom were receiving services. The information from the consultation activities
(which involved approximately 50 participants)
• BEHMHT have records indicating that they found that adults with autism said that their biggest
are currently providing services to 43 adults priority was having interventions which enabled
with HFA, the vast majority of whom (37 or them to be independent as well as helping them to
85%) have a primary diagnosis of Asperger’s develop self-management strategies. They wanted
Syndrome (AS). The remaining six have other this to be followed by low-level continued support
diagnoses including atypical autism and other to maintain wellbeing. It was felt that facilitative
pervasive developmental disorders. support was required to help them gain life skills
• Of the 43, 17 (40%) have a single, primary such as managing their finances, moving into
diagnosis of AS. The other 26 (60%) have employment, developing friendships, relationships
a range of secondary diagnoses including and social networks, cooking, shopping, etc. All
paranoid schizophrenia (11) with the remainder those interviewed, emphasised the need to access
a mix of anxiety, personality, behavioural and support intermittently to prevent escalation to crisis
psychotic disorders. situations. There was also perceived to be a huge
gap in psychological services available to those
• It is also worth noting that the total number of
with HFA. However, it is worthy of noting that
adults known to BEHMHT and Adult Social
the Improved Access to Psychological Therapies
Care with HFA is 62 out of a predicted 915
(IAPT) project in Enfield was little known about.
living in Enfield. This represents a “discovery”
rate of 7%. Liverpool for example has a rate of The information gained from the consultation
14%. seems to be in line with the national and regional
picture about needs and services.Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 13
3.4 What can we conclude about The support needs and potential service
responses of these three groups are illustrated in
the support needs of people with the table below.
autism living in Enfield?
The number of people with autism living in We do not know how many more people with
Enfield will increase in the next 15 years. This is HFA and their carers in Enfield will come forward
particularly striking in the case of children and as a result of greater publicity and promotion
young people moving into adulthood over the about clearer diagnostic pathways, assessments
next few years with a diagnosis of autism. and easier access to a range of services.
We therefore can only estimate the demand
Maintaining contact with this group and their for diagnostic assessments, post diagnostic
carers following transition into adulthood would support. The NAO report (2009)35 advises that
significantly increase the numbers known to adult such specialist services should aim to engage
services and enable better planning for current 8% of the local HFA population at any one time,
and future needs for this population. half of which are likely to need support services.
For Enfield this would represent a target of
From all the national and local information it is approximately 37 service users at any one time.
clear that the local HFA population will have a
range of needs split into three broad groups: We know from other local authorities, that where
an infrastructure is put in place to meet some
• Those with high needs and are generally able of the needs outlined, the demand for a range
to access services at present. of services will increase. Clearly this might need
• Those with low needs who require preventive managing and prioritising, but the NAO report
services from time to time and are currently does provide some evidence that adopting an
not receiving services. early intervention and preventive approach to
potential escalation and crisis will be cost neutral
• Those with no need for services. over time.
Table 1: Support Needs and Potential Service Responses
HIGH NEEDS
• Severe and enduring mental health problem
• Secondary and tertiary mental health
• Risk of suicide
services
• Offenders
• Forensic MH services
• Severe autistic traits/challenging behaviour
• Adult Care Management Services
• Physical disability or frailty
LOW NEEDS
• Unaware they have HFA and why they have a range of • Diagnostic assessment
social and other issues • Post diagnostic support and information
• Little understanding of the disorder and how to manage it • Social Skills Training
• Little or no knowledge of services or potential help available • Information and advice on how to live
• Isolated lifestyle and few or no friends with the disorder
• Unable to cook, shop, travel independently, budget or • Practical support with correspondence,
maintain personal hygiene forms, benefits etc
• Difficulty dealing with bureaucracy, completing forms, • Practical support with everyday tasks
claiming benefits • Improved awareness and access to
• Difficulty finding work or not working mainstream services
• Difficulty keeping a job • Cognitive Behavioural Therapy
• Dependent on family/living with family • Social Clubs/Activities
NO CURRENT NEED
• No problems with daily living tasks
• Living independently or in a stable relationship • No services required
• In Employment
Adapted from Westminster Joint Commissioning Strategy for Adults with Asperger Syndrome 2010-201314 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
Section 4.
Market Analysis
A market analysis has been • Minimal formal diagnosis (and difficulty in
getting a diagnosis) prevented access to some
undertaken to provide a picture of additional support services.
existing local services within Enfield. • College Courses or skills development courses
It also refers to some services outside specifically for those with HFA.
the Borough as specific services for • An Asperger Group for service users – the one
those with HFA are very few. running in Barnet was too far.
• More knowledge about the needs of those
4.1 Map of services with HFA so that a Centre could engage them
An overview of services that are available in more.
Enfield and surrounding areas is attached as
Appendix 4. There are very few specific services A continuing theme throughout the development
for people with HFA, so details are also given of the strategy, and no different from the national
where mainstream services make recognition picture, has been that responding to the health
of the needs of people with HFA and have and social care needs of adults with HFA often
made some reasonable adjustment in how their falls between LD and MH services. BEHMHT are
services are promoted and delivered. It is not a not currently commissioned to provide treatment
comprehensive list and it is one that is evolving for adults with neurodevelopmental disorders
as mainstream services and those within the including ADHD or Autistic Spectrum Disorders
Community and Voluntary sector address how where there is no associated co-morbidity.
they can adapt some of their services to make Currently they do provide some services to
them accessible and relevant to those with HFA. people with HFA with a primary diagnosis of
Aspergers, with a recent list indicating 43 people
A questionnaire was recently sent to the with Aspergers, of which 17 have a primary
Community and Voluntary Sector, including diagnosis of Aspergers and no secondary
Supporting People and Floating Support diagnosis. The Trust have stated that they will be
providers asking them about how many people forwarding new referrals they receive, including
they had provided services to with autism, and those from GP’s, to the relevant commissioners.
how many of these were with HFA. Of the 17 The commissioners need to clarify what they
responses 8 had provided services to a total of consider should and could be provided under the
42 people with HFA, or suspected HFA in the existing block contract.
past year. Responses to a question about gaps in
services included:
• The good language skills of those with HFA
masked their difficulties. This resulted in
many people with HFA being assessed as not
eligible for FACs.Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 15
4.2 Service Quantity This should include support to live independently,
with carers or within supported housing provision
The numbers of adults known to be receiving
covering areas such as general social skills,
services is set out in the needs analysis in
budgeting, welfare rights, communication and
Appendix 3.
relationships. Service provision should be in line
The services provided to the 11 adults with HFA with the draft VCS Commissioning Framework
through the local authority are: where one of the priorities is “To strengthen the
availability of targeted services which support
• 1 Residential Care Placement prevention and early intervention that aim to
keep people well and living independently in
• 1 Adult Placement
the community, reducing the need for statutory
• 3 Day care with 1 also receiving personal care services”.36 This could include helping adults
and Direct Payments with autism find meaningful work and day
opportunities.
• 3 Professional Support
• 3 Additional Support in supported tenancies The current main services provided within the
(1 also receiving Direct Payments). Private and Voluntary sector which focus wholly
or to a significant extent on those with HFA
The services provided to 43 adults via BEHMHT
include:
are provided through a variety of teams and
settings including:
• Specialist employment services provided by
Prospects (run by NAS).
• 15 (35%) through the Severe and Complex
Non-Psychotic service line by the Enfield • Day opportunities, outreach, supported
Complex Needs Team and by dual diagnosis living and floating support by Marcus and
network; Marcus, Outward Supported Living Services
(Carterharch), One Housing Group, St. John
• 10 (23%) through Psychosis service line by the
of God Hospitalier Services, Person-centred
Enfield Community Rehab Team, S&R Team
Day Opportunities, and Roseneath (recently
and the Wellbeing Team;
opened and part of Priory Group).
• 8 (19%) through Common Mental Health
• Residential services provided by Robinia Care.
Problems by the West Enfield Primary MH
Team and Enfield PC Psychological Therapy
Service; 4.3 Service Quality
• 5 through Forensic by Inpatients and Outreach; The consultation with carers or other
stakeholders has revealed that the issue is a
• 4 (9%) through Crisis and Emergency by in
lack of services rather than dissatisfaction with
patient and day care;
those that are provided for those with HFA. The
• 1 (2%) through Dietetics (eating disorders). following analysis discusses the degree to which
various service areas are lacking. The analysis is
The Council is intending to commission a range based on interviews with people with autism, their
of generic services in the areas of Information, families, staff from provider organisations, the LA
Advice and Guidance; Advocacy and Support. and BEHMHT.
(Advice, guidance and advocacy may be
particularly required when the welfare benefit 4.3.1 Identification and diagnosis
changes are introduced from April 2013).
Currently Enfield does not have a formal
diagnostic service. GPs can send a referral to
Enfield’s Health Commissioners who decide
whether a specialist diagnosis will be paid for at
Central and North West NHS Foundation Trust
(CNW) or at South London and Maudsley NHS
Foundation Trust (SLaM). BEHMHT are currently
running a pilot diagnostic service with referrals
currently coming from Barnet and Haringey.16 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
4.3.2 Assessment of need Potential students are likely therefore to need
Currently people with HFA do not have a advice and help in obtaining it.
clear route to a FAC assessment. There are
no specialist services providing assessments Southgate and Barnet College has specific
of their care needs. Generic assessments, courses for young learners who are not yet ready
particularly if there is an accompanying physical for mainstream courses aimed at developing their
disability will be provided by Care Management independence, life and work skills. SC also has a
Services. The Primary Mental Health Care Team department devoted to serving college students
will undertake an assessment where someone with disabilities in mainstream courses. It is
also appears to have a mental health need understood that it is planning to develop a local
or perhaps their autistic traits are considered mini-college specifically for people with autism.
severe. For those receiving a FAC assessment
The College of Haringey, Enfield and North East
there is some anecdotal evidence locally,
London (CONEL) is a vocational further education
backed up by experience nationally that without
college, run by Ambitious about Autism. It aims to
assessors skilled in the needs of those with HFA,
provide education and training to their students,
assessments are likely to result in a person being
irrespective of past achievements. CONE are
assessed as being more able than they are due
developing provision from April 2013 on their
to the often hidden and unexpressed difficulties
Enfield campus working with Tree House School,
experienced by this group.
in Muswell Hill which is also run by Ambitious
about Autism.
4.3.3 Supported Employment
IDEA covering the Enfield area specialises on Capel Manor College is London’s only specialist
those with autism and includes a caseload horticultural centre that offers full and part-time
of about eight of those with HFA. A work courses leading to national qualifications which
psychologist is also available to advise staff and support progression to employment or further
employers and potentially the unemployed person study.
about addressing barriers and how to support
someone with HFA. The work psychologist has 4.3.5 Advocacy
been involved with five or six people with HFA As people with HFA have difficulties in
over the last few years. The number of people communication and in articulating their needs,
with HFA that there are likely to be in Enfield access to advocacy services is essential. Generic
compared with the low number in terms of advocacy services are provided within the
caseload mentioned above, would suggest that services provided by Enfield Disability Action.
access to supported employment (and other EDA provides resources for disability groups,
employment based help) is difficult. promotes awareness, enables input into planning
and consultation mechanisms and manages
4.3.4 Supported Further and Higher several disability projects including UDirect and
Education EAPP.
People with HFA can benefit from further
education, university, college and vocational U Direct for example have support staff to assist
courses and indeed any leisure activities or short people using individual budgets and direct
courses that reduce isolation. However evidence payments. EAPP (Enfield Advice Plus Partnership
suggests that people with HFA find it difficult to Project) co-ordinates a network of more than 50
cope with some aspects such as dealing with the organisations across Enfield that specialise in
physical and social environments as well as time providing a wide range of services which include:
management. welfare benefits advice, advice on housing, debt
management, community care.
The numbers of people with AS in further and
higher education is not recorded. Those going However it must be born in mind that traditional
to University are eligible for a Student Disability models may not work well, unless these services
Allowance, though national data suggests only can adapt, respond and accommodate to the
about half receive one. communication and sensory difficulties people
with HFA have.Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 17
4.3.6 Housing 4.3.8 Mental Health Intervention
Based on national studies, it is thought that at It has been well established that around 30% of
least 40% of people with HFA are living with their people with HFA are likely to experience higher
parents. When linked with the findings that 60% than normal levels of mental health problems
of parents, carers or siblings do not consider the including depression, anxiety, and obsessional
person with HFA they are caring for could live behaviour over their lifetime. This may be an
independently, this indicates a need for future underestimate as due to their isolation and
supported housing. It has not been possible to impaired communication, mental health problems
get accurate figures for the number of people in may be less likely to be picked up in this
supported housing in Enfield. Someone with HFA population. Access to psychological therapies, in
is not a specific category or priority for eligibility particular CBT, has been shown to be affective.
when assessing housing need for example. Currently there appears to be no defined access
for appropriately adapted psychological therapies
There are people living independently in in Enfield.
accommodation, which they may own, or
be rented from a private or social landlord. Research suggests that people with HFA have
However they may run into problems through higher rates of suicide due to their higher rates of
communication difficulties, sensitivity to noise depression and so it is crucial that preventative
for example or caring for themselves. Without services are accessible to this group.
advocacy and support it could lead to a
breakdown in the tenancy. 4.3.9 Family/Carer support
Enfield Carers Centre offers support and advice
Practical support and training for areas such as
to unpaid family carers in Enfield. It offers
cooking, cleaning, paying bills and managing
social activities, advice and information and a
money have been shown as a high need for this
counselling service. It is currently exploring the
group. This is probably currently largely provided
possibility of setting up a carers group for carers
by families at the moment.
of people with HFA.
However there are a number of organisations
within Enfield which offer floating support to those 4.3.10 Transition
living independently or support within supported The transition service provided by the local
living schemes. authority is located within the Integrated
Learning Disability Service (ILDS), but covers
4.3.7 Social integration all young people with a disability or those who
People with HFA experience high levels of social have additional needs. For most young people
isolation and exclusion. The communication in transition an assessment of their needs
impairments result in difficulties in developing will have been completed before the young
friendships and networks is always likely to be person reaches the age of 18 in a ‘Moving On’
difficult. assessment. It is completed jointly by children’s
and adult services to find out what the young
There is no club or group within Enfield person’s aspirations for the future are, as well as
specifically for people with HFA. There is an their support needs. The Transitional Operation
Aspergers Club running in Barnet which is too far Group (TOG) co-ordinates the process, and has
for one resident known to services within Enfield representatives from the relevant children and
but might be accessible for others. adult services in order to ensure as smooth a
transition as possible. The transitions service do
The Ruth Winston Centre runs a range of report it does have some difficulty in obtaining
activities. It has a few people with HFA attending, MH involvement in the process. CMS have
but they report that is difficult to engage agreed to provide assessments in some cases,
them and would welcome ideas on how to although the staff did not consider they had the
provide better support. They note however, relevant expertise.
that the people with HFA, although they seem
disengaged, keep on coming.18 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018
However most people with HFA, unless they Services provided by the Community and
have severe autistic traits or a co-morbid mental Voluntary Sector, which may include people
health problem, will not be eligible for adult care with HFA, are grant funded or, increasingly,
services under FAC once they reach the age of commissioned.
18. The only services they will have access to
are mainstream services, which may not have
the expertise and training to meet their specific
4.5 Current Funding
needs. There is no comprehensive local data on the
current health and social care costs of services
Connexions work with young people age 13- for those with HFA. It has been possible to
19 (and up to the age of 25 for young people obtain some information about the cost of the
who have learning difficulties or disabilities) social care provision to the 43 people with HFA
and provides advice, guidance and access to receiving a service from BEHMHT within the block
personal development opportunities. Some contract. The costs range from £182 per week
personal advisers work with young people in to 24-hour support packages costing £1,216 per
schools and colleges, or with training providers. week. According to the information provided the
Others are based in organisations such as the current total cost per year is £171,288 for the
youth service, specialist young people centres social care element of their support.
and Connexions Centres. Due to resource
constraints Connexions generally can only It has also not been possible to cost the services
provide intensive support to those with a provided by Enfield Council to the 76 adults with
Statement of Educational needs. autism (including those with LD), including the
cost of direct payments or individual budgets.
Transitions staff report that most young people
with HFA do not have such a statement. It is very We do know that 30% of people with HFA are
difficult to get mainstream schools to provide likely to have MH problems. In Enfield this would
the information to Transitions about the potential equal 275 people. According to NICE (2011)37
needs of this group of young people if they are 0.06% of people in the general population with a
part of School Action or School Action Plus. mental health problem will access acute inpatient
care. The NAO (2009) report identifies that if you
When young people with HFA who were are on the autistic spectrum you are twice as
accessing services via CAMHS reach the age of likely to access acute inpatient treatment resulting
17 years, 3 months, the CAMHS team holding in a prevalence rate of 0.12%. In Enfield this
clinical responsibility will refer the patient to the equates to 33 people.
adult CMHT. At the point of referral to adult
mental health services the CAMHS team holding Based on the NAO (2009) report and taking
clinical responsibility will arrange a CPA meeting inflation into account a conservative estimate of
to be held when the patient reaches the age of the cost of providing such treatment is £87,998
17 years 6 months. When the patient reaches the per person per year, a cost totalling £2.9 million
age of 17 years, 9 months, the final stage of the per year. A cost set to rise given that the numbers
handover process will commence. This will entail of people with autism are also set to rise.
joint working between CAMHS and adult CMHT
clinicians, with responsibilities agreed at the CPA It must also be remembered that the only figures
meeting held at the age of 17 years 6 months. mentioned here are those related to acute
inpatient care. However, as stated in the NAO
report and the NICE (2011) report, the cost of
4.4 Contracting arrangements acute inpatient care is actually less than the other
Services provided by BEHMHT are within a block inevitable costs that are incurred as a result of
contract. a mental health problem. It is worth noting here
that time and time again the research states that
Residential and nursing home placements and access to specialist autism services reduces the
some funding for day opportunities are made risk of mental health problems and hence is a
on a spot basis, with the price being negotiated cost-effective investment in the long-term.
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