Trafford’s Autism Strategy

June 2012 – 2014

Author:Jane Forrest - Autism Coordinator

Contents

Foreword………………………………Page 2

Context

National………………………………Page 4

Local ………………………………Page 9

Terminology ………………………………Page 11

What is Autism? …………………………Page 11

Prevalence ………………………………Page 12

Trafford’s Strategy ………………………Page 13

What’s currently happening …………Page 15

Priorities for Trafford ……………………Page 19

Action Plan ………………………………Page 26

Forward

The national autism strategy for England kick-started fundamental changes in public services. It represents “a shared approach towards a common goal: a society that not only accepts and understands autism , but also provides real opportunities for adults with autism to live fulfilling and rewarding lives”

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Trafford recognise that autism is a lifelong developmental disability and although some people can live relatively independently, others will have high dependency needs requiring a lifetime of specialist care.

In response to “Fulfilling and Rewarding Lives” Trafford have written their strategy which responds to both national and local priorities. This strategy sets a clear framework to enable Trafford services to work together for adults with autism.

Context

National Context

The Autism Act (2009)is the first piece of legislation focused on the needs of a single disability group. It became law after significant publicity and campaigning about the needs of people with autism by groups and individuals.

A number of high profile reports such as “Think Differently – Act Positively – Public Perceptions of Autism” (National Autistic Society 2008)and)“I Exist the message from adults with autism in England” (National Autistic Society 2008identified the difficulties experienced by adults with autism for example an employment rate of less than 15% high numbers of people experiencing mental health difficulties and a huge burden on families supporting people well into adulthood.

“Valuing People Now” (2009) the government’s strategy for people with learning disabilities recognised that adults with autism are some of the most excluded and least heard people in society whose needs are often not addressed by commissioners service providers and policy makers.

Valuing Employment Now (2009)

Set out an ambitious goal to increase radically the number of people with learning disabilities in employment by 2025. It aimed to close the gap between the employment rate of people with learning disabilities and that of the disabled population as whole. Many people with autism also have additional learning disabilities

The National Audit Office Report “Supporting people with autism through adulthood”(2010) looked at the financial and emotional costs of not supporting people appropriately. It made a number of recommendations which were echoed in the Autism Strategy including better integrated commissioning, improved data on local prevalence rates, improved planning around transition, training for people working with people with autism, particularly those involved in assessment, education, employment and health. The report also highlighted the particular needs of adults with higher functioning autism and Asperger syndrome who often fail to meet eligibility criteria for health or social care services but who need a particular kind of support which emphasises the promotion of well- being and independence. By enabling this group to become more socially and economically active and by investing in flexible person centred ways of supporting them local areas could improve outcomes and reduce reliance on services.

“Fulfilling and Rewarding Lives” the strategy for adults with autism in England (2010) set out the vision for transforming the lives and outcomes of adults with autism.

“All adults with autism are able to lead fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support when 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”

The strategy recognises that some people with autism do achieve this goal and are making important contributions to society and the communities in which they live; however there are significant numbers of people who are economically and socially excluded and who fail to fill their potential because of lack of understanding and appropriate support. There are others who through lack of support experience mental health breakdown, addiction problems, homelessness or involvement with the criminal justice system.

“Fulfilling and Rewarding Lives”built on the priorities identified in other policy documents

“Our Health, Our Care, Our Say” (2006) identified the following

Better prevention and early intervention services, encouraging GPs and PCTs to work more closely with Local Authorities

More say and a stronger voice for patients

Addressing inequalities and improving access to community services

Supporting people with long term conditions and their carers

The desired outcomes articulated in the paper include:

  • Improved health and wellbeing
  • Improved quality of life
  • Making a positive contribution
  • Increased choice and control
  • Freedom from discrimination and harassment
  • Improved economic wellbeing
  • Maintaining dignity and respect
  • Improved leadership, Commissioning and use of resources.

“Putting People First” (2007)

Set out the governments vision for transforming social care services including better joint working, promotion of choice control and dignity, improved economic well- being and the opportunity to make a positive contribution, and the increased personalisation of services.

Also need to make reference to the Green Paper- Children and Families Bill

Proposed unified assessment, all children with SEN entitled to a Personal budget as adults, educational provision and support up to 25years.Support and aspiration: A new approach to special educational needs and disability: A consultation

Department for Education

What does the national strategy identify as priorities?

  • Increased awareness and understanding across all public services
  • Developing a clear and consistent pathway for diagnosis in every area which is followed by the offer of a personalised needs assessment
  • Improving access for adults with autism to the services and support they need to live independently in the community
  • Helping adults with autism into work
  • Enabling local partners to plan and develop appropriate services for adults with autism to meet identified needs and priorities.

To support the priorities identified in the strategy additional work has been commissioned by the Department of Health to raise the profile of autism. This work includes:

  • Study on prevalence been commissioned
  • Public Health Observatory for people with learning disabilities will include the collection of data on people with autism who also have a learning disability 2011.
  • The establishment of new clinical guidelines for adults and children with autism by NICE
  • 2010/11 NHS standard contract for mental health and learning disability services includes reference to adults with autism
  • To help drive forward the personalisation agenda SCIE and NAS working on an “At a glance Personalisation” briefing on autism.
  • The Department of Health is planning to extend its programme of payment by results for mental health to include adults with autism
  • Department of Health and Department for ChildrenSchools and Families have funded a study on transition to report in 2012
  • The Care Quality Commission Report “The State of Health Care and Adult Social Care in England” found that 83% of local authorities are now considering the needs of adults with autism in Joint Strategic Needs Assessments commissioning strategies and plans

one year after the publication of the Autism strategy the Department of Health published ‘Fulfilling and Rewarding Lives’ : Evaluating Progress (2011) This document identified some key outcomes that local areas could use to benchmark their progress. The Trafford Autism Partnership Board will use this information to pull together its own strategy. The Quality Outcomes, Steps to Progress and Service Ambitions are outlined in the table below.

Quality outcomes that will show progress / Service Ambitions / 10 steps to progress
Adults with autism are included and economically active / Local authorities and partners know how many adults with autism live in the area / Appointing a local autism lead
Adults with autism are living in accommodation that meets their needs / A clear and trusted diagnostic pathway is available locally / Including autism within all key procedures
Adults with autism are benefiting from the personalisation agenda in health and social care and can access personal budgets / Health and social care staff make reasonable adjustments to services to meet the needs of adults with autism / Collecting and collating relevant data about adults with autism
Quality outcomes that will show progress / Service Ambitions / 10 steps to progress
Adults with autism are no longer managed inappropriately in the criminal justice system / Developing an integrated commissioning plan around services for adults with autism
Adults with autism and their families and carers are satisfied with local services / Developing a plan to deliver appropriate levels of training to front line staff
Adults with autism are involved in service planning. / Mapping local employment services that support adults with autism
Involving adults with autism, their families and carers in service design and planning
Developing and implementing a staff survey about working with adults with autism
Learning from and sharing best practice

Local Context

In May 2011 a consultation event was held in Trafford to gather the views of people with autism and their families. The aim of the consultation was to start a dialogue between services and families that could inform Trafford’s Autism Strategy. In total 27 people attended (26 family members and 1 person with autism)

The main themes to come out of the consultation are summarised below:

Training

An Awareness Training package should be developed and rolled out, either

as partof other training or as specific training, to raise awareness of Autism

and Aspergerstraining groups should be prioritised, they should include the following

Health Professionals

-G.P’s

-G.P’s staff

-Hospital staff including A&E staff and Paramedics

-Psychiatrists

-Health Workers

Education Professionals

-School Counseling staff

-Teachers and other teaching staff

-Lunch Time Assistants

Mainstream Services

-Leisure staff

-Library staff

-Job Centre Plus staff

Local Authority Staff

-Mental Health service staff

-Housing staff

-Employment service staff

-Social Workers

-Community Workers

-Outreach Workers

-Local Authority workers from both Children and Adult services

Carers Services

-Carers Centre

-Parents/Carers (to know how to deal with news)

Diagnosis and Assessment of Need

Develop a Diagnostic Pathway which would signpost people to appropriate services;it should include a mechanism to signpost people who are not FACS eligible.

Ensure that a carer assessment is triggered at the same time as assessment/diagnosis. The assessment/diagnosis process should be as quick

as possible

Transition

Individuals going through transition should get the earliest diagnosis possible

Individuals going through transitions should have a person centred transition plan

There should be a dedicated person to explain and co-ordinate the transition process

Planning

The following groups/mechanisms should be used to gather information from

Peoplewith ASD and their families:

-Via Trafford Carers Centre

-Via ASGMA

-Via National Autism Society

-Via G.P’s

-Questionnaires

-Drop in Events

-Newsletters

-Postal Information

-Email Information

-Home Visits

-A Carers/Family Members Groups

-Centre for Independent Living

-Consultation Events

The following service developments should be explored:

-A specific Autism Advice Line

-An Autism website/page on My Way

-Appropriate Respite Services

-A work placement network

-Joint services with other Local Authorities

-Appropriate Supported Employment opportunities

-Confidence building courses

-Training opportunities

-Drop in centres

-Regular play sessions for Children with Autism

-Central autism advisory service

-Breaks for parents

-One to one support for children

-Supported living accommodation

-Access to college

-Special Inclusion Teachers

-Treatment services for OCD

-Services to help with Anger Management and Social Skills

-Support services for siblings

-A carers/family members group which reports to the Autism Partnership Board and who influence the work of the Board

Terminology

“Fulfilling and Rewarding Lives” The strategy for adults with autism in England (2010) recognises that individuals and professionals use a variety of terms to describe the difficulties referred to in the strategy as Autism. These terms include autistic spectrum disorder, autistic spectrum condition, autistic spectrum difference, Pervasive Developmental Disorder not otherwise specified, and neuro diversity. The strategy uses autism as an umbrella term for all such conditions including Aspergers Syndrome. The clinical guidelines currently in development by the National institute for Health and Clinical Excellence (NICE) will also use the term autism.

What is Autism?

The national autism strategy defines autism 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. The three main areas of difficulty which all people with autism share are:

  • Social Communication
  • Social interaction
  • Social imagination or flexible thinking.

Many people with autism also experience some form of sensory sensitivity. Autism can co-exist with other difficulties e.g. Attention Deficit and Hyperactivity Disorder (ADHA) Dyspraxia and Learning Disabilities. People with autism can also experience mental health problems and physical and sensory disabilities.

Autism is known as a spectrum condition because of the range of difficulties that affect people. At one end of the spectrum people can have average to above average IQ may have been through mainstream education and be accessing no specialist services, at the other end people may have very low IQ may have additional learning disabilities, and other impairments and may be accessing a range of specialist services. For this reason it can be difficult to say what people with autism need because they are not a cohesive group and will need a range of different provisions.

Prevalence

Emerson and Baines (2010)estimated the prevalence of autism amongst adults with learning disabilities and came up with a figure of between 20 and 33%. Prevalence rates of autism in the general population, i.e. those who do not have learning disabilities are estimated to be around 1% (Baird et al 2006)

Assessment and diagnosis of children and adults is improving and many areas have or are working towards integrated care pathways. However, we know is that autism is underdiagnosed, and that in some groups for example girls/women incidence rates are likely to be higher.Some adults may choose not to seek a diagnosis. These individuals may be known to voluntary groups and carers groups, or may not come into contact with specialist services.

Based on these estimates the likely prevalence rate of people with autism in Trafford based on a population of 217,307 of is likely to be around 2,170 with people with a learning disability showing a much higher incidence around 20% or 633. (Trafford Performance Team 2011)

Trafford’s Strategy

Trafford’s Autism Strategy and local implementation plan should also recognise other outcome frameworks such as the Public Health Outcomes Frameworks (Department of Health 2012) and the Social Care Outcomes Frameworks (Department of Health 2012). Many of the themes are familiar and include choice, support, independence and involvement in the local community balanced against safeguarding.

Adult Social Care Outcomes Framework 2011/12 identifies the follow outcomes and outcome measures.

Enhancing quality of life for people with care and support needs

Outcome measures

  • People manage their own support as much as they wish, so that they are in control of what, how, and when support is delivered to meet their needs.
  • Carers can balance their caring roles and maintain their desired quality of life
  • People are able to find and maintain employment when they want, maintain a family and social life and contribute to community life, and avoid loneliness or isolation

Delaying and reducing the need for care and support

Outcome measures

  • Everybody has the opportunity to have the best health and wellbeing throughout their life and can access support and information to help them manage there are needs
  • Earlier diagnosis, intervention and reablement mean that people and their carersare less dependent of intensive services
  • When people develop care needs the support they receive takes place in the most appropriate settings and enables them to regain their independence

Ensuring people have a positive experience of care and support

Outcome measures

  • Carers feel they are respected as equal partners throughout the care process
  • People know what choices are available to them locally, what they are entitled to, and who to contact when they need help
  • People, including those involved in making decisions on social care, respect the dignity of the individual and ensure that support is sensitive to the circumstances of each individual.

Safeguarding adults whose circumstances make them vulnerable and protecting them from avoidable harm

Outcome measures

  • Everyone enjoys physical safety and feels secure
  • People are free from emotional abuse, harassment, neglect and self- harm
  • People are protected as far as possible from avoidable harm disease and injuries
  • People are supported to plan ahead and have the freedom to manage risks the way they wish.

Public Health outcomes Framework

  • Increased life expectancy
  • Reduced differences in life expectancy and healthy life expectancy between communities – reducing the disparity between communities

What’s Currently Happening inTrafford?