Adult Care and Health Cabinet Panel Wednesday 11 May …



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)

Purpose of the report

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.

Background

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.

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

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.

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;

• develop a communication strategy to promote and raise public awareness and understanding;

• ensure that accurate data is available and is up-to-date with regard to the demography profile of all people in Hertfordshire on the autistic spectrum, in order to ensure that the planning of support services are appropriate.

8. Helping adults with autism into work

8.1 STOP GAP is an Asperger’s specific group currently in Watford and Stevenage which offers support and access to training and employment for young people aged 16 – 25.

8.2 Work Solutions have developed two works skills programmes: one that is learning disability-specific, and the other for people who are more able. These are both available to people living with autism, and can be adapted as necessary. Work Solutions also continues to work supporting individuals for as long as they need them once employment is found.

8.3 Via the recently developed employment board, Hertfordshire County Council is aspiring to be an exemplar employer for disadvantaged groups, including people living with autism. Some of the initiatives being developed include:

• Work tasters being offered across all areas of the County Council for all disadvantaged groups. One young man with high functioning autism who did a ten week taster with Health and Community Services management board support team has gone on to do a year’s supported employment.

• Apprenticeships and supported employment opportunities are being developed in many areas.

• An employment advisor is based with the transition team, and along with the transition coordinators in the team has started to look at both employment and day opportunities with young people from the age of 15.

• Work is very much in partnership with:

▪ Aspirations for life, an organisation working with children and young people with their families from a very early age looking at what the possibilities might be when they grow up.

▪ Job Centre Plus

▪ Colleges

• A sub-group of the employment board is developing a menu of opportunities that might be available within the County Council, along with clear pathways to voluntary work and employment for a variety of different groups.

• ‘Shine’ is a private car valeting service in Hertfordshire which employs four adults who are on the spectrum as fully fledged employees. Future development of this business at one of Health and Community Services resources (Farnham House) is currently under way: this could offer opportunities to others.

We know we still need to;

• work more with potential employers on the positive images via the awareness work;

• establish ‘step down’ resources for adults leaving schools and colleges. This has been included in part of the housing strategy: it is hoped that Hertfordshire, in partnership with some private and voluntary organisations, will develop specific ‘through put’ services for young people with autism thus preventing us placing people out of county, often at very high costs. This will also enable workers to have more immediate access to clients and cut down on expensive ‘out of county’ trips.

9. Enable local partners to plan and develop appropriate services for

adults with autism to meet identified needs and priorities

9.1 Work has been done to encourage providers to be clear about the specific services in which they are expert. A number of organisations have grown in Hertfordshire which are able to offer autism specific services. We have even started to see successes where individuals have been enabled to go on from structured residential care and supported living units, to supported individual tenancies with the use of individual budgets and the right kind of long arm support.

9.2 We continue to look at commissioning new autism specific service providers, and are much clearer with the private and voluntary sector where the gaps in services are - such as autism specific services. A detailed specification for all new developments in Hertfordshire for adults with autism (across the spectrum) in being developed in line with the housing strategy.

We know we still need to:

• create greater understanding and knowledge in local schools and colleges;

• further develop autism-specific resources, ensuring sensory and practical aspects are included in all new builds. This is under way, and the first two new builds or conversions should be in place by 2012;

• work further with the borough and district councils. We need to ensure that individuals are registered with them to identify what and where appropriate housing is needed, and where the gaps are (not just for those who meet Fair Access to Care).

• we are very committed to working in partnership and close collaboration with:

o Individuals on the autistic spectrum their families and carers

o Children ‘s Services

o Health and Community Services

o Mental Health Services HPFT

o Primary and secondary health services.

o Specialist Providers

o Schools and Colleges

• engagement with wider stakeholders to include:

o Housing

o Education – Schools and colleges

o Employment/ Day opportunities

o Police

• ensure providers take a proactive and enabling approach in supporting people;

• ensure the inclusion of older people with autism in our work, who are often excluded.

10. High Functioning Autism and Asperger’s Syndrome

1. An issue which often arises when supporting people living with autism is with those individuals at the higher-functioning end of the spectrum and those with Asperger’s syndrome. This group often has very high IQs and function well in many areas, but still require specialised support.

2. Those with Asperger’s syndrome often present well and can have fluent conversations, however if time is spent with them it soon becomes clear that their understanding of the world is very different to that of other people. People with Asperger’s Syndrome can find it harder to read the signals that most of us take for granted. This means that they find it more difficult to communicate and interact with others, which can lead to high levels of anxiety and confusion. While there are similarities with autism, people with Asperger’s Syndrome have fewer problems with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties. These may include dyslexia and dyspraxia, or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy.

10.3 People with Asperger’s Syndrome sometimes find it difficult to express themselves emotionally and socially. For example, they may:

• have difficulty understanding gestures, facial expressions or tone of voice;

• have difficulty knowing when to start or end a conversation and choosing topics to talk about;

• use complex words and phrases, but may not fully understand what they mean;

• be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm. For example, a person with Asperger’s Syndrome may be confused by the phrase 'that's cool' when people use it to say something is good;

• struggle to make and maintain friendships;

• not understand the unwritten 'social rules' that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation;

• find other people unpredictable and confusing;

• become withdrawn and seem uninterested in other people, appearing almost aloof or rude;

• behave in what may seem an inappropriate manner;

• demonstrate a love of routines;

• have specific special interests;

• display sensory difficulties.

10.4 As described, they are neither mentally unwell nor do they have a learning disability. It is for this reason that historically they have been passed backwards and forwards between the Mental Health and Learning Disabilities services. They do not, nor will they ever, ‘fit’ neatly into either service. There is huge commitment on the part of both Health and Community Services and Hertfordshire Partnership NHS Foundation Trust (HPFT) - both of which recognise the need to work in a co-ordinated way to ensure that both the health and social care aspects of this group are met, and that they do not fall ‘between the net’. The joint commissioning arrangements stipulate that that people with higher functioning autism with no learning disability and people with Asperger’s Syndrome who meet the fair Access to Care criteria (FACS) will be supported by HPFT even when they are not classified as having a mental illness. Social care responsibilities include: the offer of a Personal Budget or Direct Payment depending on service-user choice; assistance with support planning, including signposting to local resources and activities; accessing housing and college, volunteering or employment opportunities; developing social skills.

5. HPFT took on this clear responsibility in April 2010.

11. Financial Implications;

1. Other than the funded information liaison post and the ongoing funding

for the social groups there are no financial implications at this stage in

the work.

12. Recommendations

12.1 The Panel is invited to note the report and comment on the work to date, including suggestions for ways to take the work forward.

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Agenda Item No.

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