HERTFORDSHIRE COUNTY COUNCIL
ADULT CARE AND HEALTH CABINET PANEL
WEDNESDAY 11 MAY 2011 AT 10.00AM
SERVICES FOR ADULTS AND YOUNG PEOPLE LIVING WITH AUTISM IN HERTFORDSHIRE
Report of Director of Health and Community Services
[Author: Sue Darker, Assistant Director Learning Disability and Mental Health
Tel: 01992 588821]
Executive Member: Richard Smith (Adult Care and Health)
1. Purpose of the report
1.1 To inform the Adult Care and Health Cabinet Panel of the developments and updated arrangements for services for adults and young people living with autism in Hertfordshire.
2. Background
2.1 The national vision laid out by the Department of Health strategy ‘Rewarding and Fulfilling lives’ is that:
‘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.’
2.2 The Autism Act 2009 underlined the government’s commitment to achieving this vision. It was the first ever piece of legislation designed to address the needs of one specific impairment group – adults with autism. It was followed in March 2010 with the strategy for adults with autism in England: ‘Towards Fulfilling and Rewarding Lives: a Strategy for Adults with Autism in England’. This sets a direction for long-term change to realise the vision, but also identifies five specific areas for action over the next three years. These are:
· increasing awareness and understanding of autism among frontline professionals ;
· developing a clear, 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 within the community;
· helping adults with autism into work; and
· enabling local partners to plan and develop appropriate services for adults with autism to meet identified needs and priorities.
2.3 The approach taken in the Strategy is to make existing policies work better for adults with autism. This approach reflects the fact that there are already a wealth of government policy and initiatives which should support adults with autism. Therefore the emphasis of the Strategy is to avoid placing additional statutory requirements or financial burdens on frontline staff delivering public services, on businesses, or on local planners.
2.4 The government has identified outcomes service ambitions which will help evaluate progress towards the vision set out in Fulfilling and Rewarding Lives. These go beyond health and social care, covering also employment, housing and overall satisfaction with public services. Above all, they make it clear that each local area is expected to assess the needs of adults with autism locally, so that informed and transparent decisions about service provision for adults with autism can be made.
2.5 It is recognised that while each local area has to take these actions forward, change will take time and each local area will progress at its own pace. The priority is that there is a clear progression and that adults with autism, their families and carers – as well as service providers themselves – understand the direction of travel and the outcomes identified. The government will review progress, and can update the guidance if progress is too slow or certain aspects are not being fulfilled.
3. Hertfordshire
3.1 In Hertfordshire we want to make the vision a reality for people with autism across the entire spectrum and to take some of the work we have already begun up to the next gear.
3.2 In December 2009 we held a multi agency conference and heard first-hand from people with autism and their families, along with a variety of the carers and professionals who support them.
3.3 We heard that people wanted more social groups (where people who don’t always meet the Fair Access to Care criteria can meet and be supported by professionals who really understand them), and to be able to create self-support networks. We already had a very active group in St Albans, so in partnership with the National Autistic Society (NAS) we have funded a new group in Stevenage which is already extremely popular.
3.4 People also told us that they wanted information that is easy to access, and readily available when it is needed. Again, in partnership with the NAS we have funded and appointed to a post to start to gather the information and create an information hub which will be advertised and available on a soon to be developed web site.
3.5 Following the publication of the national strategy we have revisited what we are already doing, and looked at what else we still need to do to make the vision a reality for local people.
4. What is already in place
4.1 It is important to acknowledge that a wealth of research has been done, and a huge amount of knowledge and information is already available following a three year Asperger’s / autism project which Health and Community Services hosted from 2005 to 2008. Many of the following developments are a direct result of the learning and work over these and subsequent years.
4.2 The following sections lay out the work which is and has been done to date, along with work/action still needed under the five specific areas for action as laid out in 2.2.
5. Increasing awareness and understanding of autism among frontline professionals
5.1 A very successful, and highly acclaimed, bespoke five day training course was established in 2005. To date the following have been trained:
· 240 staff from the Community Mental Health teams from Hertfordshire Partnership NHS Foundation Trust
· 370 HCS staff
· 210 from the private and voluntary sector (P&V)
· 20 Parent carers
5.2 Eight psychologists have also been trained, and are now delivering training to service providers.
5.3 A one-day awareness training has also been developed, and is used with all new staff at the point of induction.
5.4 Hertfordshire Autistic Resource Centre (HARC) – the Hertfordshire branch of the National Autistic Society - is a very close and important partner, and trains teaching assistants in Severe Learning Disabilities, Mild Learning Disabilities and mainstream schools. HARC held a very successful conference for multi-agency professionals on 25 March 2011.
5.5 Health and Community Services, with the NAS, held a conference on 4 April 2011 for professionals, carers, and people with autism as a follow up from the December 2009 conference. From this, a stakeholder event is being planned to engage in consulting on the Herts Strategy.
5.6 A positive and open approach to Health and Community Services has developed over the years, enabling parents and carers easier access to services within adult teams. Trust around us ’doing’ what we say we will ‘do’ has greatly improved since 2005.
We know that we still need to:
· further raise public awareness and understanding of autism. This will be led by ‘experts by experience’, their families, and carers;
· promote a positive awareness and attitude to everyone on the autistic spectrum;
· ensure autism is part of the diversity and inclusion strategy;
· ensure a robust ‘depth and breadth’ training strategy is in place for all Health and Community Services and Hertfordshire Partnership NHS Foundation Trust staff;
· look at how we take the training further in to the private and voluntary sector, other health settings and to the wider public; develop a focus of including training in contracts for the future to ensure the longevity of autism training and its ever-evolving status, as well as dividing the costs to ensure value for money;
· ensure all Special Educational Needs Coordinators (SENCO’s) are trained and deliver information to families and carers e.g. with reference to Hertfordshire Autistic Resource Centre (HARC)
· development a peer support/mentor scheme for people with autism and their families;
· extend the current Health Liaison Team to work with GP’s and community nurses re awareness raising in the first instance.
6. Develop a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment
6.1 Diagnosis for adults with Asperger’s syndrome has in the past been sketchy at most. In the past Health and Community Services and the Hertfordshire Partnership NHS Foundation Trust have used the Maudsley Hospital and Cambridge University, which was both a costly and lengthy process. Professionals and very few clinicians had the training to be able to accurately diagnose, particularly with regard to adults with high functioning autism and Asperger’s syndrome. This has improved, both through a greater awareness, and due to the bespoke training which has been available. There is now a core group of clinical psychologists within Hertfordshire Partnership NHS Foundation Trust who are able to offer this very complex service to adults.
6.2 More work needs to be done with regard to diagnosis across the spectrum. Many children are now diagnosed with Autistic Spectrum Condition (ASC), and receive a statement of special educational needs.
6.3 There are, however, still large numbers of people who have entered into adulthood with no diagnosis or any kind of record of having been diagnosed, as their primary need is recorded as Learning Disability. Historically this has been due to lack of awareness, where autism has often been translated as either ‘hyperactive’ or ‘challenging behaviour’. Evidence shows that because the autism part is often overlooked, inappropriate support is given which often leads to further ‘challenging’ behaviours.
We know that we still need to;
· develop better systems of recording autism as a co-morbidity. Discussions are already underway with phase two of ACSIS to enable workers to be able to identify more than one need or diagnosis. There is evidence that single diagnosis tends to provide support only in one area. This has led to an inconsistency of appropriate provision for people with autism, as the learning disability takes the lead and the autism is addressed as an after condition. This in turn has lead to staff working without suitable knowledge about someone with autism; the consequences of which can be far-reaching for that individual and can offer the least cost effective approach.
· work with Children Schools and Families and Hertfordshire Partnership NHS Foundation Trust to ensure that clinicians are all working with consistent diagnosis and assessment tools. HPFT has developed expert interest groups for clinicians who have an interest in autistic spectrum disorders, and further training is in the pipeline via the NAS specifically;
· continue our work with partners, in particular GPs, to clarify their role and understanding of autism and assessment of need;
· collate more accurate data to provide appropriate services from childhood to adulthood. This is essential for future planning and provision. Again, evidence suggests that knowing a diagnosis at an early stage can be preventative in later years;
· ensure Hertfordshire is linked to national developments and information in order to keep up-to-date with new initiatives and thinking. This includes the consideration of an autism specialist ‘virtual’ team.
7. Improving access for adults with autism to the services and support they need to live independently within the community
7.1 For people with high functioning autism and Asperger’s Syndrome there are two social groups: a long-standing one in St Albans, and a more recently set up one in Stevenage. These are for both Fair Access to Care and non-Fair Access to Care eligible people, and are extremely popular. They offer a forum to both self-support and to learn coping techniques together. People report that being able to attend these have in many cases kept them from becoming lonely or depressed, and tipping into needing services. These groups are funded by Hertfordshire County Council and managed by the National Autistic Society. Hertfordshire Partnership NHS Foundation Trust also has a social group which runs in Ware. These groups are fundamental to providing enabling services to young adults: in essence they are often a ‘life line’. They are also proving to be one of the most cost effective options for those on the higher end of the spectrum.
7.2 An information liaison post has been developed. This is again funded by Hertfordshire County Council, and hosted and managed by the National Autistic Society: the aim being to create a one-stop point of contact/information for Fair Access to Care eligible and non-Fair Access to Care eligible individuals and their families.
7.3 An Asperger/autism specific homecare agency has been set up in partnership with a private provider, and is available to be used by individuals via an individual budget, or by professionals commissioning directly. This is a through-put service: support is provided to enable people to develop skills in living, work, relationships etc. Once this has been achieved, clients are supported to live in less supported environments, with the end aim of independence. This independence has been achieved at last three times since 2007.
7.4 C4A is a support group for parents/carers of people with Asperger’s/high functioning autism run by HARC and based in Welwyn Garden City. They are actively involved with HARC, and are key to moving the Autism Strategy forward with our other partners.
We know we still need to:
· develop more person-specific communication systems for non-verbal individuals. This will include visual communication systems, language cards, sign language and assistive technology. There are many new forms of communication tools on the market, so it is often best to see what suits the individual. This can be life changing for many with autism, and can open up whole new worlds for them;
· provide a quality and meaningful life to people on the autistic spectrum in a way which makes sense to them to include:
o Leisure and work activities
o Travel training
o Holidays/breaks
o Access to transport
o Social Skills
o Independence
o Relationships
· via the developing information liaison post, ensure that all statutory teams have access to information to direct or sign-post individuals, families and/or carers;