Resources

The National Autistic Society

The UK’s leading charity for people with autism (including Asperger's syndrome) offers information, support and a range of services.

It also campaigns for change in policies and public sector services.

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Autism West Midlands

The charity provides care and support across the region. 

It has six residential homes, two supported living establishments,and helps hundreds of people and their families in the community.

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Adult autism support services in Warwickshire

Specialising in help for adults with autism who do not have a learning disability, the council run service offers support ranging from planning daily activities and routines, to setting up home and developing independent living skills.

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Video - Working with people with autism: the autistic perspective

Produced by the Social Care Institute for Excellence (SCIE), the video tells the story of Scott, a man with autism and learning disabilities, learning to make sense of society.

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North-South divide in adult social care

A recent BBC survey shows less money will be spent in the year ahead on adult social care services in the North of England, than in the South.

The survey looked at spending plans for the new financial year. Findings reveal an estimated fall of 4.7% in expenditure in the North, amounting to £3.4bn; and a rise of 2.7% in the South, equivalent to £3.33bn.

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Call to modernise social care legislation

A single, clear, modern law and code of practice that would pave the way for a coherent social care system, has been called for by the Law Commission, following a three year review of adult care law.

The commission says current laws, totalling over 40, are outdated and flawed; and should be replaced by a single law that clearly states people’s legal rights entitlements.

The review is the first of two that government ministers will use to reform social care in England. The independent Dilmot Commission has been set up to look at how social care should be funded. It will report in July 2011.

The Law Commission recommends:

• putting the individual’s wellbeing at the heart of decision-making, using new statutory principles
• giving carers new legal rights to services
• placing duties on councils and the NHS to work together
• building a single, streamlined assessment and eligibility framework
• protecting service users from abuse and neglect with a new legal framework
• and, for the first time, giving adult safeguarding boards a statutory footing.

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High 90s success rate for independence service

Worcestershire Council’s Promoting Independence (PI) Service, is succeeding in meeting up to 95% of objectives agreed with service users each month.

The service helps people recovering from illness, or who are disabled, or have mental health issues, acquire the skills needed to remain independent.

Support offered by PI is based on objectives agreed with service users. These can be learning to prepare meals and drinks, managing medication, household tasks, physical exercise or personal care.

A recent survey of service users' views show:

• 43% rated the service as excellent
• 43% rated it as good
• 14% found it to be satisfactory.

For more information contact: Dee Zimmermann, Team Manager, telephone: 01905 734200, email: dzimmermann@worcestershire.gov.uk

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Helping people into work

Work4You, a new service helping people with mental health issues find jobs, has been launched in Staffordshire.

Funded by Staffordshire County Council, NHS North Staffordshire and South Staffordshire PCT, the scheme, run by national charity Making Space, will offer help with CVs, application forms, interview techniques and getting people into part or full time work.

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Improving choice, increasing control

Dudley Borough Council has increased choice and control for service users, by improving the quality of information it provides.

The Council’s Community Information Directory, developed as a one stop shop for information about activities, events and services, now includes a Personal Assistant Register.

The register has been added in response to the growing demand for personal assistants. It will make it easier for people needing help in their homes to find and employ a suitable assistant.

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Healthy living boost for Worcester’s over 50s

Over 50s with learning disabilities, who are based in Kidderminster, are to benefit from a programme of healthy lifestyle activities funded to the tune of £25,500, by the Worcestershire Partnership’s Health Improvement Fund.

The partnership brings together local government, health, learning providers, police, the probation service, voluntary and community organisations, and local businesses in Worcestershire.

The money has been given to local community organisation, the Odell Trust, which runs activities and services including healthy eating sessions, dental clinic sessions and blood pressure testing.

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Doing it the Warwickshire way

Warwickshire County Council has introduced a monthly adult autism news bulletin, to keep partners, service users, carers and practitioners informed of activities and improvements to services.

Available on line and via email, the Adult Autism Strategy Update is mailed directly to members of the strategy implementation group, which had its inaugural meeting in January this year.

The group (or Partnership Board as it is referred to in the national strategy) is made up of individuals and families, social care workers and voluntary, community, and private sector representatives.

The update is also available on the council’s website.

Other council initiatives include compilation of a list of organisations and useful contacts. Anyone using the services listed are asked to comment on how well the organisation’s staff understood the needs of people on the autistic spectrum. Many of them are not autism specialists and can use the feedback to modify services and shape training.

The council’s adult autism team met with all disability employment advisers in Coventry and Warwickshire, with the aim of forging links and working together to help people find employment.

Contact: Simon Veasey, telephone: 024 7675 4035 email:simonveasey@warwickshire.gov.uk
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Clinical guideline on the way

Development of a clinical guideline to help improve the care of adults with autism is underway, as part of the national autism strategy.

The National Institute for Health and Clinical Excellence (NICE) is developing the guideline to make diagnosis of autism clearer and consistent, and make it easier for people to receive services no matter where they live.

There are approximately 400,000 adults with autism in England, and around half have a learning disability.

The guideline is due to be published in June 2012.

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Evaluating progress

Seven outcomes will be used to judge successful implementation of the Autism Strategy.

Detailed in ‘Fulfilling and Rewarding Lives’: Evaluating Progress, they are:
1. adults with autism achieve better health
2. are included and economically active
3. live in accommodation that meets their needs
4. are benefitting from the personalisation agenda in health and social care, and can receive personal budgets
5. are no longer managed inappropriately in the criminal justice system
6. families and carers are satisfied with local services
7. adults with autism are involved in planning services.

The outcomes have been developed with a number of partner organisations, including the Association of Directors of Social Care and the National Autistic Society, and are supported by three overall ambitions:

1. local authorities and partners know how many adults with autism live in the area
2. a clear and trusted process for diagnosis is available locally
3. health and social care staff make reasonable adjustments to services to meet the needs of adults with autism.

Outcomes and ambitions will be used to assess public sector progress in improving services.

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Guidance to successful implementation

Statutory guidance issued by the DH details responsibilities and actions to be taken for successful implementation of the Autism Strategy.

Two areas targeted for action in ‘Fulfilling and rewarding lives’ statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy are: improving the way needs of adults with autism are identified, and effective inclusion of their needs in planning and commissioning of local services.

To achieve this, authorities will have to:

• raise awareness and train staff in identifying potential signs of autism; and equip them with skills needed to make adjustments to services, in the way they behave and the way they communicate
• arrange for effective identification and diagnosis of autism in adults, followed by an assessment of their needs for services
• plan services to assist transition from childhood to adulthood
• ensure local planning and leadership of services for adults with autism

Key responsibilities for local authorities involve:

• appointing a lead professional to develop diagnostic and assessment services in their area. The Director of Adult Social Services is responsible for making sure correct processes are in place for carrying out needs assessments, sharing information between relevant parties, and informing people of their entitlements
• compliance with existing obligations to plan for transition from childhood to adulthood, as set out in the Special Educational Needs Code of Practice
• allocation of responsibility to a named joint commissioner/senior manager for commissioning community care services for adults with autism.

DH suggests local organisations may want to establish a local autism partnership that sets a clear direction for improving services.

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Autism strategy breaks new ground

England’s first ever national Autism Strategy commits local authorities and the NHS to raising awareness of adults with autism, as well as improving diagnosis of the condition, and making services more accessible.

‘Fulfilling and rewarding lives’, the strategy for adults with autism in England, is focused on helping adults with the condition to live independent fulfilling lives and find work.

The strategy, published in March 2010, includes plans for a National Autism Programme Board, training for health and social care practitioners (supported by £500,000 of investment), guidance on making public services more accessible, plus plans for making diagnosis of the condition clear and consistent.

Among targets to be met in the first year of rolling out the strategy, is agreement of regional action plans.

The strategy will be reviewed in 2013.

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Gathering relevant data

Results from research into the prevalence of adults with autism in England, will be made available to local commissioners to help with planning and purchasing of services.

The study has been commissioned by DH and is being led by researchers at the University of Leicester. Final results are due later this year.

Under the national autism strategy commissioners are required to gather information about the:

• number of adults known to have autism in their area
• range of need for support to live independently
• age profile of people with autism.

Local authorities and the NHS are expected to collect this information as part of their existing duties under disability and equalities legislation.

For effective implementation of the autism strategy, service commissioners will also find it useful to know the numbers of adults with autism in their area who are:

• in employment
• likely to need support to find work
• placed in their area and funded by other local authorities
• placed out of their own area
• in hospital or living in other NHS funded accommodation
• resettled from long stays in hospital or NHS residential campuses, to a community set up
• living at home on their own, or with family members, and not receiving health or social care services
• living with older family carers.

Results from the first phase of the study into the prevalence of adult autism, show not a single person identified with autism or Asperger’s syndrome during a community survey in England, knew they had the condition.

The research has also revealed autism is more common in males, as well as people living in social housing, and individuals without higher educational qualifications.

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Facts about autism

The National Autistic Society describes autism as a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also shapes the way they make sense of the world around them.

It is 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 also 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. They have fewer problems with speech but may still have difficulties with understanding and processing language.


Facts and figures

• Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound - sometimes devastating - effect on individuals and families
• It is much more common than many people think. There are over half a million people in the UK with autism - that's around 1 in 100.
• Autism doesn't just affect children. Children with autism grow up to be adults with autism
• Autism is a hidden disability - you can't always tell if someone has it
• While it is incurable, the right support at the right time can make an enormous difference to people’s lives
• Nearly two-thirds of adults with autism in England do not have enough support to meet their needs
• At least one in three adults with autism experiences severe mental health difficulties due to a lack of support
• Only 15% of adults with autism in the UK are in full-time paid employment
• 51% of adults with autism in the UK have spent time with neither a job, nor access to benefits, 10% of those having been in this position for a decade or more
• 61% of those out of work say they want to work
• 79% of those on Incapacity Benefit say they want to work

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