Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 - www.enfield.gov.uk www.enfieldccg.nhs.uk

Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 - www.enfield.gov.uk www.enfieldccg.nhs.uk
Enfield Joint Commissioning
      Strategy for Adults with Autism


Enfield Clinical Commissioning Group
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 - www.enfield.gov.uk www.enfieldccg.nhs.uk
Enfield Joint Commissioning
Strategy for Adults with Autism

Adult Social Care Commissioning Team
Health, Housing and Adult Social Care
April 2013
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 - www.enfield.gov.uk www.enfieldccg.nhs.uk
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 1


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
Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018 - www.enfield.gov.uk www.enfieldccg.nhs.uk
2 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018

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 - www.enfield.gov.uk www.enfieldccg.nhs.uk
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 breakdown
4 Enfield Joint Commissioning Strategy for Adults with Autism 2013-2018

Section 1.

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
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
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
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.
                                                        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
• 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.29
Enfield 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).
                                                                  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

  •   Severe and enduring mental health problem
                                                                              • Secondary and tertiary mental health
  •   Risk of suicide
  •   Offenders
                                                                              • Forensic MH services
  •   Severe autistic traits/challenging behaviour
                                                                              • Adult Care Management Services
  •   Physical disability or frailty
  • 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 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 2010-2013
14 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
• 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
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.
according to individual need.
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