Warrington Autism Strategy
for Adults
2014 -2017
Warrington
Clinical Commissioning Group
Warrington Autism Strategy for Adults 2014-17
WARRINGTON
Borough Council
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Contents
Foreword by Cllr Pat Wright
Introduction
• Warrington’s Autism Strategy for Adults: The National Guidance
• What is autism?
Warrington’s Autism Strategy for Adults
• Our Strategic Goals
• Our Strategic Objectives
How will we measure our success?
• Warrington’s Joint Autism and Learning Disability Partnership Board
• Annual Review and Report
• Autism Self-Evaluation
Appendix 1: Local Consultation and Research
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Warrington Autism Strategy for Adults 2014-17
Foreword
I am pleased to present Warrington’s Autism Strategy for Adults 2014-2017 which has
been developed jointly with NHS Warrington Clinical Commissioning Group. It builds
upon work already underway and lays out the objectives we have set for ourselves and
our partners as part of our commitment to improve the lives of people with autism, their
carers and their families. Additionally, it details for all our partners and stakeholders,
how we will take forward and deliver on the objectives of the recently refreshed National
Autism Strategy, at a local level.
Autism is sometimes described as a ‘hidden disability’, not only because it has no
physical signs, but also because adults with autism are some of the most excluded and
least visible people in the UK. Adults with autism can often be victims of inadequate
healthcare services, social stigma and discrimination.
Too many adults with autism are unemployed, struggling to get by on benefits and
reliant on the care and support of their parents, both financially and for practical help.
Housing is another key issue to be faced when those with autism strive to develop their
independence.
The main focus of the strategy is to ensure training for staff; to improve the identification,
diagnosis and ongoing support of adults with autism; and to provide leadership for the
development of services. This will build public and professional awareness, enable a
change in attitudes, and reduce the isolation and exclusion that people with autism face
too often.
Through the Joint Learning Disability and Autism Partnership Board, we have involved
professionals from Education, Children’s services, people with autism and their carers
and professionals who work with people with autism. I would like to take this opportunity
to thank them all for their help, involvement and contributions both for developing the
strategy and monitoring it going forward.
Cllr Pat Wright
Executive Board Member for Health and Wellbeing and Adult Services
Warrington Autism Strategy for Adults 2014-17
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Introduction
People with autism are an important part of our community in Warrington. This local
strategy supports the Government’s vision for transforming the lives of adults with
autism and aims to make it a reality.
}
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.’
}
HM Government: Fulfilling and Rewarding Lives; the strategy for adults with autism in England
(2010)
Warrington’s Autism Strategy:
The National Guidance
• In 2009, the Autism Act outlined the Government’s commitment to improve the lives of people with autism. The Act makes two significant pledges:
1. To develop a national strategy to improve the lives of adults with autism.
2. To provide statutory guidance for local authorities and local health commissioners
on the needs of adults with autism.
• In 2010, the national strategy, Fulfilling and Rewarding Lives, was the first strategy for adults with autism. The strategy has five strands which formed the Core Areas
of work.
1. Increasing awareness and understanding of autism among frontline professionals.
2. Developing a clear, consistent pathway for diagnosis in every area, which is
followed by the offer of a personalised needs assessment.
3. Improving access to the services and support which adults with autism need to l
ive independently within the community.
4. Helping adults with autism into work.
5. Enabling local partners to plan and develop relevant services for adults with
autism to meet identified needs and priorities.
•
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As promised by the 2010 Autism Act, the national statutory guidance followed later that year. It placed a duty on all local authorities to adopt a local strategy for adults with autism, which embraced the principles and Core Areas of the national strategy. Local authorities and the NHS have a duty to follow this guidance.
Warrington Autism Strategy for Adults 2014-17
•
In 2013, the Government carried out a consultation to inform its scheduled refresh of
the national strategy. The consultation took into account the views of adults with
autism, their family members, carers and the professionals who work with them.
Fifteen “Priority Challenges for Action” emerged which informed and strengthened
an update to the national strategy, Think Autism; Fulfilling and Rewarding Lives.
At a local level, five key priorities emerged from a Warrington-wide consultation.
These now inform our local thinking and our local strategy (see Appendix 1).
• In 2014, the updated national strategy, Think Autism; Fulfilling and Rewarding Lives, made it clear that service commissioners and providers need to go further to ensure that adults with autism could enjoy fulfilling and rewarding lives within autism aware communities, serviced by organisations which really did “Think Autism!”
What is autism?
There are different terms used to describe autism, such as autistic spectrum disorder
(ASD), autistic spectrum condition (ASC), autistic spectrum difference and neurodiversity. In this strategy, we will use the term ‘autism’ for all autistic conditions,
including Asperger’s syndrome.
}
Autism is defined as a lifelong condition that affects how a
person communicates with, and relates to, other people. It also affects how a person makes sense of the world around them.
}
Department of Health, 2010
The Government identifies three main areas of difficulty, shared by all people with
autism, which form the basis for diagnosis. They are referred to as the ‘triad of
impairments’.
• Social interaction (e.g. problems in recognising and understanding other people’s
feelings and managing their own)
• Social imagination (e.g. problems in understanding and predicting other people’s
intentions and behaviour and imagining situations outside their own routine)
• Social communication (e.g. problems using and understanding verbal and non verbal language, such as gestures, facial expressions and tone of voice)
Warrington Autism Strategy for Adults 2014-17
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Autism as a spectrum condition
Autism is seen as a spectrum condition, which means that, while all people with autism
share certain difficulties, their condition will affect them in different ways. Some people
with autism are able to live relatively independent lives but others may have
accompanying learning disabilities and need a lifetime of specialist support.
• People with autism may experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
• Asperger syndrome is a form of autism. People with Asperger syndrome are often
of average or above average intelligence (an IQ of 70 or above). They have fewer problems with speech but may still have difficulties with understanding and
processing language.
• In 2011, The National Autistic Society estimated that 50% of those with autism may also have a learning disability.
• Many people with autism also have other conditions such as Attention Deficit
Hyperactivity Disorder (ADHD), Deficits in Attention and Motor Perception (DAMP),
epilepsy, dyslexia and dyspraxia.
Figure 1: Autism as a spectrum condition
Autistic Spectrum Conditions
High functioning
autism, Asperger’s
or Pervasive
Development Disorder
Extreme ability
in some areas
6
Above
average I.Q.
Classic
Autism
Average
I.Q.
Mild learning Moderate learning Severe learning
disability
disability
disability
Warrington Autism Strategy for Adults 2014-17
Warrington’s Autism Strategy for Adults
Our Strategic Goals
It is a national and local priority to:
• improve the ways in which we identify the needs of adults with autism, and
• incorporate those identified needs, more effectively, into local service planning and commissioning, so that adults with autism and their carers are better able to make relevant choices about their lives
Our Strategic Objectives
The Core Areas of the national strategy, Fulfilling and Rewarding Lives (2010)
form the Strategic Objectives for Warrington’s Autism Strategy for Adults
(2014 - 2017).
1. Increasing awareness and understanding of autism among frontline professionals.
2. Developing a clear, consistent pathway for diagnosis in every area, which is followed
by the offer of a personalised needs assessment.
3. Improving access to the services and support which adults with autism need to live independently within the community.
4. Helping adults with autism into work.
5. Enabling local partners to plan and develop relevant services for adults with autism to meet identified needs and priorities.
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Strategic Objective 1
Increasing awareness and understanding of
autism among frontline professionals
What do we want to improve?
According to the 2010 strategy, Fulfilling and Rewarding Lives, “while most
professionals know something about autism, they do not necessarily understand how
autism affects people. This makes it hard for them to recognise autism and
communicate appropriately. It also means they may have little idea of how to adapt
their behaviour and their services. Training is an important aspect to address this issue.
The first and fundamental step is to increase awareness and understanding of autism
across all public services.”
National Objectives
• Improve autism awareness training for all front line public service staff, in line with
the needs of their job , and
• Develop specialist training for staff in health and social care.
Special Considerations
• Involve adults with autism in developing and delivering training.
• Training must lead not only to improved knowledge and understanding but also to changing the behaviour and attitudes of health and social care staff.
• The Department of Health states that it is essential that autism awareness training is available to:
•
•
•
•
•
Everyone working in health or social care;
Staff carrying out community care assessments;
Students undertaking social care core training;
All staff in the criminal justice sector;
All Jobcentre Plus Disability Employment Advisors, and
• That autism awareness should be part of the core training curricula for doctors,
nurses and other clinicians.
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Warrington Autism Strategy for Adults 2014-17
Priority Challenges for Action (Think Autism, 2014)
Priority 1:
“I want to be accepted as who I am within my local community. I want people and
organisations in my community to have opportunities to raise their awareness and
acceptance of autism.”
Priority 6:
“I want to be seen as me and for my gender, sexual orientation and race to be taken
into account.”
Priority 9:
“I want staff in health and social care services to understand that I have autism and how
this affects me.”
How will we make the improvements?
1.1 Develop autism awareness training for all social care and NHS professionals and develop an e-learning model which is widely available.
1.2 Develop specialist training for professional staff who deal more closely with people with autism.
1.3 Ensure advocacy services provided by the local authority have received autism
training.
1.4 Continue to provide and promote autism training opportunities to those working in
the criminal justice system.
1.5 Ensure employers and employment staff are autism aware.
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Strategic Objective 2
Developing a clear, consistent pathway for
diagnosis in every area, which is followed by
the offer of a personalised needs assessment
What do we want to improve?
According to the 2010 strategy, Fulfilling and Rewarding Lives, “For many adults,
receiving a clinical diagnosis of autism is an important step towards a fulfilling life. It can
not only help them and their families understand their behaviour and responses, but
should also help with access to services and support, if they need them.”
National Objectives
• Increase capacity around diagnostics
• Ensure a diagnosis is recognised as a reason for a community care assessment, and
• Provide relevant information to adults with autism and their family or carers at the point of diagnosis to help them understand the condition and access local support
Special Considerations
• National Institute for Health and Care Excellence (NICE) guidelines set out a model of care pathway for local commissioners to develop referral and care pathways
• A lead professional should be appointed to develop diagnostic and assessment
services for adults with autism
Priority Challenges for Action (Think Autism, 2014)
Priority 7:
“I want a timely diagnosis from a trained professional. I want relevant information and
support throughout the diagnostic process.”
How will we make the improvements?
2.1 The Autism and Learning Disability Partnership Board will continue to develop clear post-diagnosis pathways for adults with autism, including post-diagnosis support, signposting to appropriate services and providing information and advice.
2.2 Improve data collection for people with autism within Children and Adult services
and ensure a diagnosis of autism for any children going through transition is
accurately recorded.
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Warrington Autism Strategy for Adults 2014-17
Strategic Objective 3
Improving access to the services and
support which adults with autism need to
live independently within the community
What do we want to improve?
According to the 2010 strategy, Fulfilling and Rewarding Lives, “Equality of access
is a fundamental principle of UK public services. But it is clear that, too often, adults with
autism are not currently able to access the services or support they need. This strategy
sets out to ensure that adults with autism are able to benefit fully from public services
within Warrington.”
National Objectives
• Reiterate the Disability Discrimination Act requirement for services to make reasonable adjustments for adults with autism.
• Enable adults with autism to benefit from personalisation of social care.
• Improve transition planning to give people with autism the right start in their adult life.
Priority Challenges for Action (Think Autism, 2014)
Priority 3:
“I want to know how to connect with other people. I want to be able to find local autism
peer groups, family groups and low level support.”
Priority 4:
“I want the everyday services that I come into contact with to know how to make
reasonable adjustments to include me and accept me as I am. I want the staff who work
in them to be aware and accepting of autism.”
Priority 5:
“I want to be safe in my community and free from risk of discrimination, hate crime and
abuse.”
Priority 10:
“I want to know that my family can get help and support when they need it.”
Priority 12:
“I want people to recognise my autism and adapt the support they give me if I have
additional needs such as a mental health problem, a learning disability or if I sometimes
communicate through behaviours which others may find challenging.”
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Priority 13:
“If I break the law, I want the criminal justice system to think about autism and to know
how to work well with other services.”
Priority 14:
“I want the same opportunities as everyone else to enhance my skill, to be empowered
by services and to be as independent as possible.”
How will we make the improvements?
3.1: Safeguarding people with autism
As with all people within the community, people with autism have the right to live in
safety and be free from hate crime, discrimination and abuse. It is the responsibility of
the Warrington Safeguarding Adults Board to protect vulnerable adults from abuse.
Safeguarding vulnerable people is the responsibility of all sectors, whether statutory
or voluntary.
3.1.1 Work with Warrington’s Safeguarding Adults Board to ensure that people with autism get support from a suitably trained advocate during safeguarding
processes, if required.
3.1.2 Ensure that people with autism know how to use the Safe Places scheme if
they wish.
3.2: Criminal Justice System
When people with autism come into contact with the Criminal Justice System it is often
up to them, or their carer, to explain what having autism means.
3.2.1 Continue to strengthen partnership working with the Criminal Justice System
ensuring engagement and representation on the Joint Learning Disability and
Autism Partnership Board.
3.2.2 Develop a clear pathway and support for people with autism who are in the
Criminal Justice System.
3.3: Personalisation
The majority of services for people with learning disabilities and autism are commissioned in a person centred way with good examples of creative and flexible support
including the use of personal budgets.
3.3.1 Develop Individual Service Funds to enable those people who cannot currently
hold a personal budget to have access to the personalisation agenda.
3.3.2 Ensure that people with autism, who are eligible for adult social care, have their
social needs assessed and supported.
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Warrington Autism Strategy for Adults 2014-17
3.4: Access to Health Services
Many adults with autism have become reluctant to see a GP or other health professional.
This can lead to delays in diagnosis and treatment of health conditions. It is essential
that health services respond appropriately to encourage people with autism to seek
advice. A partnership approach has been developed across Warrington with the Clinical
Commissioning Group (CCG), led by GPs and other clinicians to support the health
needs of people with autism.
3.4.1 Ensure all health service staff are aware of their need to have knowledge and
understanding of autism and are provided with opportunities to access learning
resources.
3.4.2 Ensure the pathway from diagnosis to post diagnosis support is clear and
communicated to people with autism, health professionals and health
organisations.
3.5: Housing and accommodation
3.5.1 The needs of adults with autism should be taken into account in local housing planning, design and allocation, in line with local priorities.
3.5.2 Support should be available for adults with autism who want to, or have to, live independently – both on an ongoing basis and during the transition period to a new home.
3.5.3 Ensure that a range of housing and accommodation options are available to
meet the broad needs of people with autism.
3.6: Transport
Having good local transport, which is accessible, enables people with autism to
develop their independence. This is particularly important in the evening, so that adults
with autism can enjoy a full range of social and leisure activities in Warrington.
3.6.1 Improve provision of transport in the evenings to enable access to social and leisure facilities.
3.7: Social activities / friendships and relationships
Having support through social involvement can help people with autism learn to cope
with many everyday situations in the community as well as alleviating social isolation.
People with autism find it particularly difficult to make friends. Support groups can help
adults with autism to build relationships with friends, partners and work colleagues and
support independent living.
3.7.1 Map social and support groups available across Warrington for people with
autism and ensure information is available on the range of groups available.
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3.7.2 Support the development of autism awareness and understanding in
organisations and staff who provide social and leisure activities.
3.7.3 Explore the potential for the development of local buddying and mentoring schemes, to enable people with autism to become more independent and confident.
3.7.4 Explore the use of assistive technology to help people with autism become more socially independent.
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Warrington Autism Strategy for Adults 2014-17
Strategic Objective 4
Helping adults with autism into work
What do we want to improve?
According to the 2010 strategy, Fulfilling and Rewarding Lives, “The ability to get, and
keep, a job and then to progress in work is the best route out of poverty, and a central
part of social inclusion. Adults with autism are significantly underrepresented in the
labour market and we are committed to doing more to help adults with autism into
employment.”
National Objectives
• Ensure adults with autism benefit from wider employment initiatives
• Personalise welfare and engage employers
• Improve existing provision
• Develop new approaches that will better support adults with autism
Priority Challenges for Action (Think Autism, 2014)
Priority 15:
“I want support to get a job and support from my employer to help keep it.”
How will we make the improvements?
4.1 Provide autism awareness to employers and ensure proactive engagement with local employers specifically about employment of people with autism including retaining work.
4.2 Collate detailed information on the number of people with autism in employment within Warrington.
4.3 Ensure that Person Centred Plans include employment issues for people with
autism and learning disabilities. This includes transition reviews and Person
Centred planning in schools.
4.4 Ensure that the Supported Employment Service supports people with autism as well as those with a learning disability into employment, and continues to develop their staff’s autism awareness.
4.5 Explore the options of voluntary work and work experience for people with autism.
4.6 Scope and engage in wider employment initiatives where available.
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Strategic Objective 5
Enable local partners to plan and develop
relevant services for adults with autism to
meet identified needs and priorities.
What do we want to improve?
According to the 2010 strategy, Fulfilling and Rewarding Lives, “While central
government can set the framework for improving the lives of adults with autism –
removing barriers, working to increase awareness – much of the responsibility for
delivery of this strategy sits locally. It is here that partners can come together to develop
relevant services – and extend existing ones – that enable adults with autism to be
included in society, reflecting the needs and priorities of the local area.”
National Objectives
• Put the needs of adults with autism on the map
• Identify and promote service models that are proven to make a positive difference for adults with autism
• Enable adults with autism and their families to have greater choice and control over where and how they live
Priority Challenges for Action
Priority 2:
“I want my views and aspirations to be taken into account when decisions are made in
my local area. I want to know whether my local area is doing as well as others.”
Priority 8:
“I want autism to be included in local strategic needs assessments so that person
centred local health, care and support services, based on good information about local
needs, is available for people with autism.”
Priority 11:
“I want services and commissioners to understand how my autism affects me differently
through my life. I want to be supported through big life changes such as transition from
school, getting older or when a person close to me dies.”
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Warrington Autism Strategy for Adults 2014-17
How will we make the improvements?
5.1 Create a systematic method for the data collection of people with autism across health and social care. Develop a data collection sharing policy inclusive of primary care, health provision and adult social care to ensure data sharing exists between services.
5.2 Update the Joint Strategic Needs Assessment (JSNA) chapter on autism to better understand local prevalence data and need.
5.3 Ensure there is clear council policy covering statutory and other public wide services and evidence of widespread implementation of reasonable adjustments being made to everyday services to improve access and support for people with autism.
5.4 Ensure that the needs and views of people with autism and their families are at the heart of planning and that they are embedded into the contractual arrangements of providers when adult services are being commissioned across health and social
care.
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Monitoring this Strategy
Warrington’s Joint Learning Disability and
Autism Partnership Board
Responsibility for managing and reviewing this strategy rests with Warrington’s Joint
Learning Disability and Autism Partnership Board (the Partnership Board). The
Partnership Board is made up of representatives from key statutory agencies, service
providers, families and representatives of people with autism. It is directly accountable
to Warrington’s Health and Wellbeing Board, which is the strategic joint commissioning
Board for health and social care.
Although the Partnership Board has been developed to consider learning disabilities
and autism separately, there are times when the same issues apply to both groups and
having a joint Partnership Board enables crucial links to be made.
In relation to the Autism agenda, the Partnership Board has the following duties:
• Overseeing the completion of the Autism Self-Evaluation and any action plans
resulting from it
• Overseeing the development of Warrington’s Autism Strategy for Adults, updates to the strategy and resulting action plans.
Annual Review and Report
Warrington’s Autism Strategy for Adults will be reviewed no less than every twelve
months. We will aim to circulate a report on our next steps to improvement alongside an
evaluation of our achievements to coincide with Autism April each year.
In addition, this strategy may be updated, from time to time, to accommodate other
plans, guidance, strategies and statutory duties, as required. For example: during this
review period, the strategy will be amended to draw on evidence from the Autism Joint
Strategic Needs Assessment (JSNA) and Warrington’s Market Position Statement for
Adults of Working Age. In the longer term, it is anticipated this strategy will expand to
include the needs of children and young people, so that consistency of approach to
service delivery and planning is easier to manage through the transition to adult services,
resulting in more favourable outcome for people with autism.
Annual self-assessment
Each local authority area is required by the Department of Health to complete an annual
self-evaluation regarding their progress and approach to the autism agenda. The
assessment is based on seven quality outcomes within Fulfilling and Rewarding Lives.
1. Adults with autism achieve better health outcomes.
2. Adults with autism are included and economically active.
3. Adults with autism are living in accommodation that meets their needs.
4. Adults with autism are benefiting from the personalisation agenda in health and
social care, and can access personal budgets.
5. Adults with autism are no longer managed inappropriately in the criminal justice system.
6. Adults with autism, their families and carers are satisfied with local services.
7. Adults with autism are involved in service planning.
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Warrington Autism Strategy for Adults 2014-17
APPENDIX 1:
Local Consultation and Research
In developing this strategy, local consultation exercises have taken place with
stakeholders, including those with autism and their families, to explore what the local
issues are. Questionnaires were developed, enabling people with autism and their
friends/family to share their experiences of using services and to provide information on
how services can be improved in the future within Warrington.
Information obtained from the consultation has helped inform the development of this
strategy. Although the response rate to the questionnaire was low, the results give some
indication of potential needs within the Warrington area.
• Improving Independence:
The majority of respondents (93%) do not live alone with 80% living with their
parents. However, the majority of respondents felt that their accommodation met their needs.
• Harassment and hate crime:
Half of the respondents said that they had been harassed or bullied since the age of 18 and 23% had been a victim of crime.
• Transition:
Less than half (45%) of respondents stated that they had a transition plan and the majority of respondents reported that they did not receive any support during the transition process.
• Employment:
The majority (58%) are not within employment, of those who are 60% worked
part time.
• Receiving support:
In gaining support form Warrington Borough Council, 45% of respondents
reported problems in seeking support and 44% did not receive any support from
the council.
Following a consultation on the draft strategy, amendments were made based on the
views of adults with autism, their family carers and advocates. In addition, the strategy
has been endorsed by Warrington’s Health and Wellbeing Partnership Board.
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Warrington Autism Strategy for Adults 2014-17