21 February 2008
We received a petition asking:
"We the undersigned petition the Prime Minister to Provide appropriate individual support for adults diagnosed/undiagnosed with Asperger Syndrome in Leeds West Yorkshire."
Details of Petition:
"Asperger Syndrome is a form of autism, a disability that affects the way a person communicates and relates to others.This may include: difficulty in communicating, difficulty in social relationships, limitation of imagination.People with Asperger Syndrome are often of average or above average intelligence.Because their disability is less obvious than that of someone with autism, a person with Asperger Syndrome is, in a sense, more vulnerable.As they get older they may realize that they are different from other people and feel isolated and depressed.People with Asperger Syndrome often want to be sociable and are upset by the fact that they find it hard to make friends.Statistics show that approx 91 per 10,000 people have an Autistic Spectrum Condition and of these approx 36% will have Asperger Syndrome.Therefore in a city the size of Leeds there will be over 2,500 individuals with Asperger Syndrome."
Read the Government’s response
It is for Primary Care Trusts (PCTs) in partnership with Strategic Health Authorities and other local stakeholders to plan, develop and improve services for local people. This system recognises that health services are better when management is devolved to the frontline. Within the framework set out in the NHS Plan, and other policy documents, PCTs with their specialised knowledge of the local community are able to effectively manage and improve local services.
The Government is committed to ensuring that people with an autistic spectrum disorder (ASD) have access to the support services they need. On 16 November 2006, the National Directors for Learning Disability, Rob Greig and Nicola Smith, and the National Director for Mental Health, Louis Appleby, published a document to assist those working with people with an ASD. Better services for people with an autistic spectrum disorder: A note clarifying current Government policy and describing good practice sets out how existing policies apply to people with ASDs and how the policies may best be delivered. The document can be viewed on the Department of Health’s website at: www.dh.gov.uk (by searching for ‘autistic spectrum disorder’).
In addition, the Government has funded a number of voluntary organisations, including the National Autistic Society (NAS), to undertake a wide range of projects to help improve services for both children and adults and to raise the general public’s awareness of autism. In particular, the Department of Health has given Section 64 funding to the NAS for several projects in recent years to:
- establish the support and care needs of people with Asperger’s syndrome (£40,000 per year between 1999 and 2002);
- provide training for parents of newly diagnosed children (£46,000 in 2001/02, £48,000 in 2002/03 and £51,000 in 2003/04);
- support access to employment for people with autism (£45,000 in 2005/06, £45,000 in 2006/07 and £51,000 in 2007/08);
- support this goal further with the initiative Brighter Horizons, Moving Towards Employment (£49,600 in 2007/08, £50,500 in 2008/09 and £56,300 in 2009/10);
- provide the guidance Independence and Autism: Good Practice for Service Providers (£49,000 in 2002/03, £49,000 in 2003/04 and £56,000 in 2004/05);
- build a network of social groups for young adults with Asperger’s syndrome and enable them to lead independent lives by helping them learn social and practical skills (£156,000 over three years); and
- support the Advocacy for Autism capacity-building programme, which is helping more than 1,000 advocacy organisations extend their provision to autistic people (£150,000 over three years).
The Department of Health formally asked the National Institute for Health and Clinical Excellence (NICE) to develop a clinical guideline in relation to the initial recognition, referral and diagnosis of ASDs in children and adolescents. This work has now begun and more information is available on NICE’s website at: www.nice.org.uk.
With regard to services for adults, in May 2006, the Department of Health published Guidance on the Statutory Chief Officer Role of the Director of Adult Social Services with supporting Best Practice Guidance on the Role of the Director of Adult Social Services (DASS). This guidance emphasises the key role of the DASS in driving improvements in the quality of social care services. As such, each council’s DASS has a role in championing the needs of adults with social care needs. This role goes beyond the immediate boundaries of social services to ensure that the needs of adults are reflected in the full range of statutory services.
Each DASS has seven key roles:
- accountability for assessing local needs and ensuring availability and delivery of a full range of adult social services;
- professional leadership, including workforce planning;
- leading the implementation of standards;
- managing cultural change;
- promoting local access and ownership and driving partnership working;
- delivering an integrated whole systems approach to supporting communities; and
- promoting social inclusion and well being.
The report, Mapping Autism Research: Identifying UK Priorities for the Future, was published in March 2004. It reviews the current state of UK autism research and the Department of Health welcomed its publication.
The Autism Research Co-ordination Group (ARCG) has been convened following the publication of Mapping Autism Research. The authors of the report and the steering group which oversaw the project called for Government to play a greater role in co-ordinating information on autism research and identifying priorities for future research.
The Group regularly brings together a core group of Department of Health officials, representatives of the Royal Colleges, research councils and the voluntary sector to exchange information and identify links between research activity and areas for further research. It aims to ensure that Ministers, Government Departments and the All-Party Parliamentary Group on Autism are informed of research findings, opportunities and gaps in the research base and works with stakeholders to disseminate information on autism research.
More generally, the Government is committed to improving the health and well-being of the population through a health and social care system, which is provided equally to those who need it, is truly person-centred and supports independent living.
Improving the Life Chances of Disabled People was published on 19 January 2005 by the Prime Minister’s Strategy Unit, and sets out a 20-year strategy with 60 recommendations. It focuses on independent living including individual budgets, person-centred planning and self-assessment enabling choice and control for disabled people. It is not just about being able to live in one’s own home (though that is often part of it for many disabled people). Rather, independent living is about providing disabled people with choice, empowerment and freedom. The report is available on the Prime Minister’s Strategy Unit’s website: www.strategy.gov.uk/work_areas/disability.
In addition, the Independent Living Review (ILR) was launched in July 2006 to identify imaginative and practical solutions to support independent living for disabled people. It is a cross-Government project led by the Office for Disability Issues (ODI). The ILR is charged with leaving in place a cross-Government five-year strategy to deliver independent living for disabled adults of all ages.