Response to Department of Health Autism Strategy guidance

Implementing Fulfilling and Rewarding Lives – Questionnaire booklet:

Implementing “Fulfilling and rewarding lives” Questionnaire booklet Consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy

© Crown copyright 2010 First published July 2010 Published to DH website, in electronic PDF format only. http://www.dh.gov.uk/publications

Implementing Fulfilling and Rewarding Lives – Questionnaire booklet:

About this questionnaire booklet This booklet contains the questions for consultation on the draft statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy, Fulfilling and Rewarding Lives. It should be read in connection with the consultation document Implementing Fulfilling and Rewarding Lives.

In line with the draft guidance, the questionnaire is divided into sections on: 1. the provision of services for the purpose of diagnosing autistic spectrum conditions in adults 2. the identification of adults with autism 3. the assessment of the needs of adults with autism for relevant services 4. planning in relation to the provision of relevant services to people with autism as they move from being children to adults 5. other planning in relation to the provision of services to adults with autism 6. the training of staff who provide services to adults with autism 7. local arrangements for leadership in relation to the provision of services to adults with autism.

Please fill in your answers in the appropriate spaces in the questionnaire booklet. You may add extra sheets if needed. Alternatively you can submit your views by emailing us at: autism@dh.gsi.gov.uk We would also like to receive best practice examples of services for adults with autism. Please either add details in the appropriate spaces in the booklet or send as separate documents.

Terminology Throughout the consultation, we use the term “autism� as an umbrella term for all autistic spectrum conditions, including Asperger syndrome.

Implementing Fulfilling and Rewarding Lives – Questionnaire booklet:

autism west midlands - Executive Summary and Introduction autism west midlands is the leading provider of specialist autism services in the West Midlands. We are a charity supporting people across the autism spectrum and their families, through our residential homes, supported living provision, family support, education, training, information helpline service and support into employment.

Our response to the Guidance takes a ‘real world’ approach: what is the real world state of affairs for the autism community; what are the problems that need to be solved; how effective will the Guidance be in solving the problems; what additional solutions could be integrated into the Guidance. The response is based on consultation with people with autism and their families, and with healthcare and other professionals: we would like to thank all of these groups for their contributions.

A number of recurring criticisms run through our ‘real world’ analysis of the Guidance. It is useful to mention these briefly before looking at the section summaries: •

The real world state of affairs is that people with autism fall through the gaps between medical and social care funding. The failure of the guidance to make local authorities and NHS bodies commit to additional funding means it is unlikely that many of the responsibilities and initiatives it describes will happen in practice.

•

In the real world, people with autism are unlikely to be diagnosed unless they also have mental health problems or have been diagnosed (as children) with specific learning disabilities. That means that many adults with autism remain undiagnosed and their needs unprovided for – until they present with mental health problems as a consequence of no diagnosis and no support. The guidance does not address this major lack of provision for adults with autism.

•

The present system therefore allows and even encourages a drift towards crisis: intervention happens late and expensively when there is a crisis, whereas early intervention can often provide support at much lower total cost to public funds, and much improved quality of life for the person with autism.

•

The current system provides a perverse incentive to increase the cost to public funds. This arises because someone with autism who is sectioned under the mental health acts moves out of the social care budget and into a mental health budget – at much higher expense to public funds, but at a large saving to the social care budget. It is important that this dangerous anomaly is removed – not only for its effect on public funds, but also because specialist autism care outside the mental health system (where this is an appropriate placement) greatly improves the quality of life for the individual with autism.

•

Action not words; deeds not thoughts. Throughout the guidance, words like ‘consider’, ‘should consider’ and ‘review’ are used. They are too vague; the status of the Guidance is rendered meaningless if many of the responsibilities are only to be considered. It is important that Local Authorities are under a duty to act rather than merely to talk or think. Therefore, we have specified throughout where responsibilities must be put into practice.

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•

We welcome the NICE diagnostic care pathways. However, the pathway model needs to be carried through from diagnosis to assessment, transition and beyond. This pathway through the health and social care system needs to be produced in a flow diagram which names the specialist services within a given locality.

•

We were disappointed that the Guidance failed to create opportunities for consultation with and inclusion of service users - especially given the importance attributed to such involvement elsewhere (Autism Act 2009; Fulfilling and rewarding lives Strategy DoH, 2010b: 7; I Exist, NAS, 2008; Disability Discrimination Act 2005).

•

The Guidance needs to be updated to properly refer to recent legislative and policy changes, including: the Equality Act 2010; Mental Capacity legislation; the Guidance on Eligibility Criteria for Adult Social Care, England 2010 (DoH, 2010a). Aiming High for Disabled Children, established in 2007, ends in March 2011.

•

In the event that the government’s White Paper Equity and Excellence: Liberating the NHS becomes law, there must be clarification about how it will affect the implementation of the autism Strategy and the contents of the Guidance.

Section Summaries Section 1 – Diagnostic services for adults with autism The real world state of affairs • • • • •

People with autism are diagnosed late, and may not be diagnosed at all unless they present with mental health problems or (as children) were diagnosed with specific learning disabilities They are not given adequate help and support after diagnosis There is a lack of specialist diagnostic capability There is a lack of therapeutic resources, including Speech and Language therapy, and access to those resources is inconsistent because of variation in eligibility criteria.

The current system is wasteful of money and wasteful of people’s lives: Ø Late diagnosis means an increase in mental health problems Ø Late diagnosis means an increase in behavioural problems Ø Late diagnosis means an increase in anxiety and distress

To what extent does the Guidance solve the problems?

•

Nothing in the Guidance addresses the gaps in diagnostic provision as it fails to: Ø create a duty to establish the need to provide diagnostic services in every authority Ø outline who will provide diagnostic services and how long an individual will have to wait before they can access them

Real world solutions •

Diagnosis. There needs to be adequate diagnostic capability in each locality. Best estimates are that at least 1 person in 100 has autism. With a typical General Practice list size of 6,000 that implies that the average GP practice will have at least 60 patients with autism. Given that around 98% of the population

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•

•

are registered with a GP, the implication is that many patients are likely to attend GP practices without their autism being diagnosed. Every GP practice, as well as having greater awareness of autism, needs to have a specific point of referral for diagnosis. We recommend as a minimum, one specialist diagnostic service for every Local Authority area or every 200,000 people.

Early intervention. Early intervention is crucial in improving the quality of life for the person with autism by minimising their anxiety and distress, and maximising their life chances by timely action. Early intervention also saves money. A system which waits until a crisis is reached is damaging to the individual and his/her family; adds to mental health and behavioural problems, and increases the cost to society as well as to the individual.

Appropriate support. Diagnosis without support is not an effective way of managing autism. Too often adults (and children) are given a diagnosis and then left to drift.

Section 2 – Identification of adults with autism The real world state of affairs • •

There is widespread lack of understanding of autism in front-line Public Sector services, including medical and criminal justice staff This often leads to the failure to: divert individuals on the spectrum from the criminal justice system; ensure they receive proper financial and healthcare advice; enable them to access appropriate support and can ultimately result in crisis.

To what extent does the Guidance solve the problems?

• •

We welcome the responsibility to identify individuals with autism, but the Guidance is too vague about this responsibility in practice.

It fails to implement the spirit of the Strategy (DoH, 2010b: 27; paragraph 2.8) to provide awareness training across all public services.

Real world solutions

•

Quality and coherence in awareness-raising. Training needs to have clear autism-specific learning outcomes and be implemented for all front line Public Sector Staff. Efficiency and effectiveness would be improved if it were supported by follow-up web-based resources and autism identification cards to remind professionals of the traits of autism and to supply them with related strategies to support individuals on the spectrum.

Section 3 – Assessment of needs for adults with autism The real world state of affairs • • • • •

The majority of people with autism do not even get a community care assessment.

Individuals on the spectrum have to wait too long for an assessment of needs The assessment of needs is often inaccurately carried out by people with no understanding of autism People with autism are often placed with generalist care providers who do not understand autism. The consequence is that these placements often fail, and damage the person with autism The current system is financially inefficient and wasteful of people’s lives:

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Ø Late assessment of needs and inadequate support after diagnosis increase mental health and behavioural problems, and increase anxiety and distress Ø The system prioritises crisis intervention over early intervention. Early intervention allows behaviour to be managed at lower cost and with lower distress; fewer mental health problems; and lower incidence of physical damage and of self-harm Ø All of these problems are compounded by the lack of understanding of autism, and by the failure of assessment tools (for assessment of needs) to deal adequately with the complexity of autism.

To what extent does the Guidance solve the problems?

•

The lack of new requirements in this section means the above problems will not be solved.

Real world solutions •

•

•

Assessment tools which understand autism. Meeting the needs of someone with autism requires, in most cases, the implementation of a detailed action plan. Someone with autism may be able to cook a meal or go out shopping or manage personal hygiene (for example), but in each case may need detailed care and support to manage these activities. The person with autism may need a detailed plan for each stage of the activity, and one-to-one support before, during and after. It is also the case that autism behaviour is dynamic, so that an activity that is manageable with low support on Monday may need intensive support on Tuesday. Until the assessment tools recognise the dynamic nature of autism, and the ‘surround care’ needs around activities, the assessments will be wrong and will not address the needs Advocacy support. Each person with autism should be assigned a specialist advocate to give them support, including support in accessing (where these apply) therapy, accommodation, employment opportunities and state benefits. A single point of contact for each person would minimise the ‘pass the parcel’ approach, where someone with autism, often unaided, is passed from one system to another.

The current approach increases distress and anxiety, and is inefficient in its use of public sector staff time Access to therapy. Access to therapy, especially speech and language therapy, is often vitally important in enabling people with autism to maximise their potential, and in reducing anxiety and distress. Lack of access to early help is likely to mean expensive crisis intervention later: someone seen as an outpatient now is less likely to become an inpatient later

Section 4 – Planning transition services for people with autism The real world state of affairs Children with autism are failed by the system in their transition from children’s to adult Services To what extent does the Guidance solve the problems?

•

It does nothing to ensure that transition plans are produced, adhered to by professionals and made freely available to individuals and their families. Nor does it create clear leadership, consistent provision and realistic expectations around transition plans.

Real world solutions •

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•

Mandatory transition plans. There need to be mandatory transition plans between the children’s and adult services. Without these plans, children can be abandoned by the system when they reach adulthood. It is important to stress that people with autism will typically find change difficult to manage.

The great change from child to adult status needs to be carefully managed to minimise mental health and behavioural problems.

Section 5 – Other planning for the provision of services to adults with autism The real world state of affairs Individuals on the spectrum fall through the gaps in mental health and learning disability services. Adults with autism without mental health problems may be entirely unsupported until the lack of support creates a mental health crisis.

•

To what extent does the Guidance solve the problems?

Despite the Strategy emphasising that these gaps should be closed, section 5 of the guidance does not appear to solve the problem as there is no commitment to funding.

•

Real world solutions Local leadership and national monitoring. Commissioning plans need proactive local leads with power and resources.

•

Section 6 –Training staff who provide services to adults with autism The real world state of affairs Professionals often lack even basic understanding of autism; this leads to individuals on the spectrum missing out on proper support.

•

To what extent does the Guidance solve the problems?

•

There is no money for training and no duty to provide a standard quantity of training at a high quality with clear learning outcomes by accredited trainers. This section of the Guidance is therefore likely to be ineffective.

Real world solutions • •

Action not words. It is essential that training is given (i.e. “we will train staff”) rather than reviewed (i.e. “we will see what training we ought to consider giving”).

Training the front line. It is essential that all front-line public sector staff have at least basic understanding of autism; of how someone with autism might behave; and of how to minimise anxiety and defuse a situation. Training is particularly important for the police and criminal justice service; for nurses and doctors; for teachers; for job centre staff, and for staff in sports facilities. This is not an exhaustive list. Doctors need improved training in recognising symptoms of autism so that patients can be referred for diagnosis – see above.

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Section 7 – Local leadership in the provision of services to adults with autism The real world state of affairs • •

Many of our consultees had experience of local authorities not having their own joint commissioners/senior managers with a portfolio for adults with autism.

When such commissioners/senior managers were in place, they lacked real strategic power and funding.

To what extent does the Guidance solve the problems?

The re-statement that local authorities should ensure that there is a joint commissioner/senior manager in every local authority with a portfolio for adults with autism is encouraging but this section lacks sufficient information.

Real world solutions •

•

Local leaders need to be named individuals with autism-specific skill-sets and clear decision-making power to project manage the implementation of all areas of this guidance. Local autism partnership boards – with wide representation – must be created as they have a vital role in supporting these local leaders to ensure effective feedback between policy and practice.

Marie Tidball Policy and Legal Officer, autism west midlands

Jonathan Shephard Chief Executive Officer, autism west midlands

Implementing Fulfilling and Rewarding Lives – Questionnaire booklet:

1. The provision of services for the purpose of diagnosing autistic spectrum conditions in adults We would like your views on the following questions about the proposed guidance around diagnosis.

1.1 Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have for adults with autism around diagnosis?

Headline Responses: We welcome the development of the NICE clinical guidelines and the model care pathway; seeing them as highly beneficial to the improvement of diagnostic services. However, a common theme that ran throughout our consultation process was the fear, held by consultees, that individuals on the spectrum would continue to fall through the gaps in service provision as mental health and learning disability services would continue to fail to take responsibility for them and their needs. This fear was not allayed by this or later sections of Guidance and our consultation sessions found section 1 lacking in clarity in a number of areas: i) It assumes that diagnostic services exist where in fact they do not or are extremely limited.

We recommend that there is a stipulation that existing services must be safeguarded and that additional services are funded (see 1.3(i)). ii) There is not enough specific detail about who would be conducting the diagnosis and where these services would be based. We recommend that flow diagrams of local care pathways are produced both for NHS and social care professionals and for service users, their parents and carers. iii) There is not enough detail about the reasonable waiting time for an individual to get diagnosis. We recommend waiting times of no more than two to three months.

i) There are currently extremely limited diagnostic services provided by the NHS, specifically for adults with autism, in the West Midlands. This is partly due to the fact that the majority of specialists who have the capability of diagnosing autism are attached to either mental health or learning disability services. Autism often presents without an associated learning disability or mental health problem and therefore people without these accompanying problems may remain undiagnosed. As a result most GPs are limited to referring individuals with suspected autism to one of these services where the individual has an accompanying mental health problem or learning disability. Furthermore, GPs often only refer cases for a diagnosis of autism to these services where they know of a named specialist who

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has experience of diagnosing autism. The Adult Neurodevelopmental Disorders Clinic at The Barberry Centre is currently the only autism specialist clinic provided by the NHS in the West Midlands and has recently had to restrict its diagnostic capacity1.

Consequently, the clarity of this section of guidance is compromised because, in asking NHS bodies and NHS Trusts ‘to review existing best practice’ (DoH, 2010b: 13) it assumes the existence of services that either do not exist or are extremely limited. Given that the NICE guidelines will not be published until the end of 2011 and these guidelines will be difficult to apply without diagnostic teams to implement them, we recommend a positive responsibility on local authorities, NHS bodies and NHS Foundation Trusts to safeguard existing diagnostic services in the statutory guidance under review here.

A Service User on the Importance of Getting a Diagnosis: ‘I wasn’t diagnosed until I was 29.

Before I got a diagnosis, I thought I was the devil! I didn’t understand my behaviour and it made me have very low self-esteem. Getting a diagnosis helped me to understand the difficult behaviour and find out ways to deal with it. I wished I had been given a diagnosis earlier as it would have helped me to reach my potential.’

ii) Our consultees felt that the guidance lacked clarity about who will be undertaking diagnostic services and where these will be provided, especially for parents, carers and service users wishing to access these services. We are aware that some of this detail is subject to the appointment ‘of a lead professional to develop diagnostic and assessment services’ (ibid) and therefore recommend that such appointments should be widely publicised. When such details are finalised, the guidelines should be supplemented with a regionally specific flow diagram to represent the local diagnostic pathways. Versions of such a diagram have been produced by the Welsh Assembly Government (Consultation Document 2007, Annex 1: 45-48), South Birmingham Primary Care Trust, (Implementation Document, 2004: 13) and the Western Health and Social Services Board, Northern Ireland (WHSSB, 2007: 49). NHS and social care professionals can be unclear about diagnostic pathways and local services for people with autism. Therefore the diagram should be designed as a reference tool both for professionals and for service users, their families and carers. To ensure this is effectively ‘I didn’t know where to go to for a diagnosis or who to ask about achieved, input needs to be provided from a variety of stakeholders it’ (Service user) including service users, health and social care professionals and the third sector2. These diagrams should also include named professionals who conduct diagnoses as well as information about how carers and service users can contact them. iii) Our consultation sessions revealed that the guidance did not outline the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have in giving potential service users a reasonable 1

Telephone correspondence with The Barberry on 08.10.10: Following a reappraisal of their commissioning capabilities they are only able to provide specialist assessments for the purpose of diagnosis for new cases, where no diagnosis has been previously been given. No follow up sessions will be given and the individual will be sent back to the point of referral with a case management plan. Previously The Barberry accepted referrals from anywhere in the West Midlands, now, this has been restricted to residents in Birmingham. It will only be able to accept referrals from elsewhere if specific funding is provided for the particular case.

2 This has already been taking place in the development of diagnostic pathways for children and young people with autism in Sandwell Borough Council.

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expectation about the waiting time between an individual being given a GP referral and them receiving an appointment for diagnosis. The absence of an expected waiting time for a diagnosis can cause a great deal of stress for the individual, especially as in most cases an individual will not be able to gain access to other services and support without being diagnosed as on the spectrum. We therefore recommend that the guidance contains a clear best practice waiting time for diagnosis of no more than between two to three months.

1.2 If not, what changes would you propose?

See 1.3 below.

1.3 Is there anything else to add that would make a difference?

Headline Responses: i) An increase in professionals capable of diagnosis is desperately needed. We recommend a two tier approach: Tier 1, that a best practice recommendation is made about the ratio of potential patient to specialist diagnostic services; tier 2 that an autism screening tool is developed for all GPs. ii) Diagnostic pathway through to assessment and access of care services should be monitored and evaluated. We recommend that as part of the local authorities’ strategic planning process they allocate this responsibility either to internal resources or commission a third party organisation, with specialist knowledge, to undertake this role. iii) Many individuals struggle to access services and information post diagnosis; we recommend a designated support worker is allocated to them to help them navigate post diagnostic information and services. iv) The signposts and information following diagnosis need to be improved. We recommend the design and use of a pack that describes what diagnosis means in practice for service users.

i) The guidance on diagnosis does not quantify the level of diagnostic provision required by local authorities. We recommend that a two tier approach is taken to increasing access to diagnosis. As so many adult service users have problems accessing diagnostic services, Tier 1 would deal with this problem by increasing the number of diagnostic service teams. To quantify the level of increase we propose that the guidance advocates a best practice provision for patient to diagnostic service ratio in a given area (see case study below). Such a ratio could be informed and continually updated by the prevalence data sought under section 5 of the guidance. Such a team would, ideally, include a professional capable of conducting the Diagnostic Interview for Social and Communication Disorders (DISCO), or its equivalent once the NICE guidelines are published, a specialist social worker and two specialist community care staff.

In addition to the problems outlined above (see 1.1(i)), a number of our service users face problems in getting a referral for diagnosis by their GP because GPs are not familiar with autism-related traits. This

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is deeply concerning given that GPs are usually the first point of contact in accessing other services.

There is no official list, in the West Midlands, of GPs capable of making a diagnosis. However, we have had communication with a Primary Care Commissioner in Sandwell Borough Council who is planning to train a group of GPs to become autism experts so that they have the capability to provide support and referrals more effectively for individuals on the spectrum. To expand this kind of work we suggest Tier 2 of the approach to improving access to diagnosis should involve two elements: a) Giving all GPs a standardised initial autism screening tool and information on local pathways to diagnosis and assessment. b) Introducing the role of expert autism GPs within each authority.

These developments are especially relevant given the emphasis the White Paper Equity and Excellence places on services provided by GPs and their potential additional commissioning powers.

Case Study: The borough of Solihull has a population of 200,000 and 17 electoral wards (http://www.solihull.gov.uk/about/16302.htm). It is estimated that 1 in 100 people in the population have autism and therefore it can be estimated that there are around 2,000 people on the spectrum in Solihull’s population of 200,000. At a minimum, a ratio of one diagnostic service per borough or 1 per 200,000 people would be a significant step forwards.

ii) Diagnostic pathway through to assessment and access of care services should be monitored and evaluated. We recommend that as part of the local authorities’ strategic planning process they allocate this responsibility either to internal resources or commission a third party organisation, with specialist knowledge, to undertake this role. iii) For many a positive diagnosis can be a relief, for others it can lead to fear of stigma and worry about the outcome of having a diagnosis. Allocating the individual a specialist support worker to help guide them through information received from diagnostician and facilitate access to assessment and subsequent care services, would help to reduce stress and help to ensure they get the support they need (see the example of best practice in children’s services below).

Best Practice: As part of a multi-agency children’s assessment team in Sandwell, family support workers are allocated to families after children are diagnosed with autism. The aim of the support worker’s role is to increase a family’s level of autism awareness and to put them in touch with local support groups/networks. As children with autism commonly exhibit challenging behaviour in the home, the support worker also provides strategies and training to empower parents to deal with this behaviour.

iv) Our service users and other consultees welcomed the responsibility to improve signposting in this section but felt it could be improved in a number of ways. Our service users said they found films such as Rain Man and A is for Autism very useful in understanding autism. They would like more information about what autism is and how it could affect their lives and behaviour in the form of a

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short film. They also wanted the information post-diagnosis to be given with pictures to support it.

Many of our service users also thought it would be useful to be put in contact with someone on the spectrum who had been through the diagnosis and assessment phase themselves, to talk to them about their experience of autism and the coping strategies they had developed. We recommend the design and use of a pack, for adults, which describes what diagnosis means in practice for service users. This could be based on the autism spectrum disorders: Parent Information Pack developed by the Special Educational Needs Regional Partnership (West Midlands). Parents also wanted workshops about how to support their child after diagnosis in adulthood.

Best Practice: The autism workshops provided by autism west midlands ‘Rising to the Challenge and Practical Interventions’, help families understand how best to support individuals in their lives who are on the autism spectrum and improve family life for all.

1.4 Do you think this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

Headline Responses: i) The aim of making diagnostic processes more accessible and consistent is lost by the use of the word ‘review’ in the third bullet point of section one of the guidance. The wording of the section thus fails to require NHS bodies and Foundation Trusts to ensure that their diagnostic processes and services meet NICE’s best practice guidance. Therefore autism west midlands recommends that this bullet point is reworded to the following: ‘Once the NICE clinical guideline is published, NHS bodies and NHS Foundation Trusts that commission or provide diagnostic and assessment services must ensure their diagnostic processes and services meet the requirements of NICE’s best practice guidance.’ ii) The guidance places emphasis on the adult diagnosed with autism to ask for an assessment of need; it was felt that in some cases it may be too difficult for a service user to request an assessment themselves. Seeking help can be problematic and stressful for individuals on the spectrum because of their difficulty in planning ahead, the stressful nature of asking for help and difficulty in knowing who to contact for help and recognise their own particular needs.

We recommend that the wording in the Guidance on page 14 be changed from ‘…if the adult diagnosed asks for one…’ (ibid: 14) to: ‘…if the adult diagnosed asks for one themselves or their carer or advocate asks for one on their behalf’.

1.5 Do you have any other comments on diagnosis?

Headline Response:

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i) We know that NICE guidelines will be published in 2011 but our organisation would like the statutory guidance to state a specific date for the completion of the review of diagnostic processes and services against NICE’s best practice guidance. This is imperative to ensure the consistency and accessibility of diagnostic pathways.

We will also explore the cost and benefits of issuing guidance to local authorities, NHS bodies and NHS Foundation Trusts to appoint a lead professional to develop diagnostic services for adults with autism in their area. We would therefore welcome examples of how local authorities, NHS bodies and NHS Foundation Trusts currently deliver and manage diagnostic and assessment services for adults with autism – for example, whether they provide a dedicated diagnostic service (perhaps shared between several areas) or rely on GPs across the area to diagnose, perhaps following additional training. We also want to examine how responsibility for diagnostic services is allocated – for example, whether it can be added as an additional responsibility of a lead professional in other areas, or whether a dedicated member of staff is required.

See above 1.3 (i)

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2. The identification of adults with autism We would like your views on the following questions about the proposed guidance around the identification of adults with autism.

2.1 Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have around identification of adults with autism?

Headline Responses: The responsibility placed upon professionals to identify adults with autism, so that professionals can make reasonable adjustments to their behaviour, is a positive step forward and is likely to create improved experiences for service users. However, our consultees had the following concerns about the lack of detail about the responsibilities surrounding identification: i) The nature of the training for professionals is not specific enough. Training must be to a prescribed standard and be accompanied by follow up materials. ii) The lack of a commitment to funding means that the guidance fails to establish that local authorities, NHS bodies and NHS Foundation Trusts will ensure that all health and social care staff receive autism awareness training. We recommend therefore that there is stated commitment to funding.

i) Educating stakeholders is vital but our consultees were worried that ‘a little bit of information can be dangerous’. Therefore, we recommend that easily accessible follow up resources and materials are made available to professionals after training such as web-based resources giving additional information on practical strategies and research. We further recommend that there is a best practice model of learning outcomes for autism awareness training which is differentiated to fit the specific needs of staff working at certain levels within the NHS and social care services (see fig 1. In section 6.1(i) below). ii) The guidance falls short of the recommendation in the strategy that ‘it is … essential that autism awareness training is available to everyone working in health or social care’ (DoH, 2010b: 28; paragraph 2.16). This is because section 6 states that funding for training in general will not be increased and because of the emphasis in the first sentence on considering what training is available (see section 2.4 (i) below). There needs to be a stated commitment to funding training as this could save money in the long-term (see section 6).

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2.2 If not what changes would you propose?

Headline Responses: Our consultation sessions revealed a number of additional points that can be integrated into this section 2: i) The pathway model needs to be carried through from diagnosis to assessment, transition and beyond. The identification of adults with autism, discussed in section 2, needs to be integrated into this pathway too. The detail of these pathways should be taught in awareness training to ensure that all professionals are clear about the routes through the health and social care systems. ii) There needs to be a commitment to increased publicity about identifying individuals with autism. We recommend issuing of identification cards which have a checklist of signs of behaviour in people on the spectrum and details about where to seek further guidance. iii) As part of the drive to raise awareness of autism amongst practitioners, we recommend the use of autism champions a) within early detection clinics in GP surgeries and b) walk-in centres.

i) autism west midlands believes that the development of care pathways is extremely useful. It enables service users to understand how to access help and support and allows professionals to successfully guide them through the complex health and social care systems. To ensure that awareness training fulfils the Strategy’s objective that “all NHS practitioners will be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary...” (DoH 2010b: paragraph 2.21), the training must include information on diagnostic and assessment pathways. This should be supported by signposting to the kind of diagrams discussed above (see section 1.1.(ii)). ii) Inevitably, in the current financial climate, prioritisation of training may lead to the exclusion of some NHS practitioners. To counteract this, our consultees felt that the training drive should be supported by shared provision across local authorities (see 6.1(iii)) and follow-up resources including: relevant research, advice and the kind of ‘guide to identification’ card discussed in the best practice example below. It must be emphasised that these resources are no substitute for training but could help to embed the level of autism awareness.

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Best Practice: autism west midlands’ Criminal Justice Development Coordinator has developed a double sided laminated card for issue to operational police officers. It is designed to be carried in their pocket notebooks and therefore available for reference whilst they are out on duty. This card is meant to act as a reminder and reinforcement of the awareness training; providing guidance about how to adapt their behaviour and direct them to the more detailed information available on our charity’s website. We recommend that a similar card is developed specifically for health and social care professionals.

iii) Our consultees thought that the use of autism champions would also help to increase awareness of autism. These champions would be individuals working across health and social care professions who demonstrate specific knowledge and experience of autism; they would be able to act as a point of contact for other professionals within their field of expertise (see following example).

Best Practice Autism west midlands works closely with a speech and language therapist, who operates within a generic speech and language service; through this partnership this therapist has raised awareness of autism in their department.

2.3 Is there anything else to add that would make a difference?

Headline Responses: autism west midlands believes that raising awareness should occur at the earliest possible stage and there should be a move away from siloed disciplinary working in relation to autism. Therefore we recommend the following: i) Autism awareness training must be included in the core curriculum of health and social care courses. ii) Although managers may not work on ‘the front line’ it was felt that they should receive training to level 5 of the qualification and credits framework (QCF) developed by Skills for Care. iii) Autism awareness training should include other stakeholders such as teachers, the police and magistrates to prevent disjointed working practices; this would properly implement the spirit of the Strategy (DoH, 2010b: 27; paragraph 2.8). Therefore, we recommend that a statutory requirement is placed on all Public Sector organisations to provide autism awareness training to all frontline staff.

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i) It was felt that autism awareness could be dramatically increased if training was properly included in the core curriculum of health and social care courses. This is explored more thoroughly in section 6.3(i) below. ii) We are concerned that in the process of prioritisation, managers will only receive basic awareness training as they may not work on ‘the front line’. However, consultees argued that if managers received training to a higher standard then autism awareness would filter through the system as a whole. This would improve their management of staff, who will have to be effectual at easily identifying individuals on the spectrum, and the managers’ decision making about the organisation of service provision. We therefore recommend that they receive training to level 5 of the qualification and credits framework (QCF), for managers of services for people with autism as specified by Skills for Care and available from January 2011 see: http://www.skillsforcare.org.uk/qualifications_and_traini Advice from service users on ng/qualificationsandcreditframeworkQCF/leadership_and identification: _management_qualifications.aspx •

Act calm! Don’t use sudden movements or hand gestures when communicating.

Understand aggressive behaviour and don’t respond to it negatively – this will escalate the situation.

Explain carefully and slowly what the problem is and what is going to happen next.

Break information down into small chunks.

Give the person with autism time to respond before asking any further questions or giving out more information.

iii) Historically individual local authority departments, such as Education, Health and Social Services, and agencies have failed to share ideas, strategies and contacts in • relation to autism. Our organisation believes that there should be a move away from this siloed working and a move towards multi-disciplinary practice. This would be • achieved partly through the development of care pathways through the whole health and social care system and through consistent practices and training across • disciplines. The Bradley Report 2009, which looked into the pathways of offenders with mental health problems and • learning disabilities and their diversion from the Criminal Justice System, emphasised the need for disciplines to work together. Although the Department of Health have competency for this guidance, as with implementing The Bradley Report, connections should be made with other departments to ensure shared working practices. The Guidance should be used as a model and integrated into other systems such as Education, Welfare and Criminal Justice. As the Strategy recognises, it is especially important that individuals on the spectrum are identified ‘when it comes to the criminal justice services... [as] it can change the way that police officers or courts view a situation’ (DoH, 2010b: 27; paragraph 2.7). Therefore, we recommend that a statutory requirement is placed upon all Public Sector organisations to provide autism awareness training to all frontline staff. This would properly implement the spirit of the autism Strategy (ibid: 27; paragraph 2.8) and enable staff across the public sector to identify people who may have autism and refer them on to the NHS and appropriate support before they reach crisis point.

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2.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

Headline Responses: i) The wording in the first sentence of the first paragraph (DoH, 2010d: 16) is ambiguous: it could mean these bodies have the responsibility to consider the current availability of training and prioritise what already exists; or review what training is available in general and prioritise, from this, who should get what training. This is imprecise and could lead to inconsistent training. We therefore recommend that the wording is changed to the following: ‘Local authorities, NHS bodies and NHS Foundation Trusts must review what autism awareness training is currently available for all staff working in health and social care and establish clear criteria to prioritise such training.’ ii) In establishing a set of criteria for training, we further recommend that Local authorities, NHS bodies and NHS Foundation Trusts use examples of training schema which outline the appropriate level of training for particular professionals. One such example is the schema developed by the Forum for Regional Educational Development in Autism (FREDA, 2006, 12-36 and Appendix 2) (see section 6.1(i) (FIG 2.) below.

2.5 Do you have any other comments on identification of adults with autism?

No. We will also explore the cost and benefits of issuing guidance that training be available to all staff – whilst leaving local authorities, NHS bodies and NHS Foundation Trusts to decide how such training would be delivered. We would therefore welcome examples of innovative best practice locally and how training can be delivered in the most cost effective way (for example, by including autism awareness in existing training packages or programmes, or provision of appropriate information through other available means, such as e-learning packages or DVDs).

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3. The assessment of the needs of adults with autism for relevant services We would like your views on the following questions about the proposed guidance around assessment of needs. Please write your answers in the questionnaire booklet provided.

3.1 Do you think that this guidance explains the responsibilities that local authorities.

NHS bodies and NHS Foundation Trusts have around needs assessments for adults with autism?

Headline Responses: Existing assessment requirements are not happening in practice. Therefore our consultees were disappointed that section 3 makes no new requirements and the language used fails to emphasise the positive obligation to carry out existing requirements. i) The word ‘consider’ in the first bullet point of the guidance should be changed to ‘must’ so that the wording of this bullet reads: ‘Each local authority must allocate responsibility to a named joint commissioner/senior manager to lead commissioning of community care services for adults with autism in the area’. ii) The lack of funding for assessments of individuals on the spectrum means that they will continue to fall through the gaps in community service provision. We recommend that funding is specifically allocated for community care assessments of this group. iii) The second bullet point says a community care assessment should be ‘carried out within a reasonable time period if the individual wants such an assessment’. We recommend the guidance gives an example of best practice for what would be a reasonable length of time.

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i) Given that many of the existing requirements surrounding community care assessments are not being carried out in practice, autism west midlands were disappointed that this section contained no new requirements. As mentioned in the forward to this response, throughout the guidance, the use of words like ‘consider’, ‘should consider’ and ‘review’ are thought to be too vague in giving details about the responsibility expected of local authorities, NHS bodies and NHS Foundation Trusts. This renders meaningless the status of the statutory guidance set out in its introduction (DoH, 2010d: 7) which says that: ‘Local authorities and NHS bodies must not only take account of this guidance, but also follow the relevant sections or provide a good reason why they are not doing so...’

In order to make the local leadership provision in section 7 of the guidance more meaningful, the first bullet point in section 3 of the guidance must create a positive obligation to allocate responsibility for commissioning. This is especially important given some of our consultees had experience of assessments not being given in certain authorities. Thus we recommend the wording of this bullet point is changed, removing the word ‘consider’, to the following: ‘Each local authority must allocate responsibility to a named joint commissioner/senior manager to lead commissioning of community care services for adults with autism in the area’.

Case Study: An individual with asperger syndrome received a diagnosis but was not told what follow up support was available. This individual was extremely bright and was accepted on to a higher education course.

The course required him to present his work to tutors and peers. However, he lacked confidence in interacting with others and had difficulties in communicating in a large social group – something associated to asperger syndrome. This led him to use alcohol to increase his confidence at speaking in public and coping with the stress of these situations. The individual subsequently developed serious alcohol problems, was expelled from the course and was later sectioned. If this individual had been given early intense specialist intervention to develop strategies to deal with his problems around social interaction then his life might not have spiralled in to crisis.

ii) The lack of a commitment to funding for assessments of individuals on the spectrum means that they will continue to fall through the gaps in community service provision. This is compounded by the fact that individuals on the spectrum often fail to get a community care assessment because they are not assessed as having a ‘critical or substantial’ need under Fair Access to Care ‘I used to be scared to face the world. I Services Eligibility Criteria (see DoH, 2010a). This is often would like to see more things happen because they present as high-functioning but often lead to get people out of the house like chaotic lives which deteriorate into crisis (see above case more day activities and groups where study). Thus their ‘critical and substantial’ needs are you can socialise.’ regularly missed by assessors who do not understand the (Service User) complex nature of autism. Diagnosis is not an end in itself, care assessments and early specialist interventions for people on the spectrum can often curb crises; in doing so both long-

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term economic and emotional costs can be reduced. This can be illustrated by the following, separate, case study.

Case Study: An individual on the spectrum was sectioned under Section 3 – the 6 month treatment order - of the Mental Health Act 1983. During a meeting to plan the service user’s after care, following discharge under Section 117 of the Mental Health Act 1983, the cost of specialist autism residential care and the cost of generic mental health residential placement were compared. The cost of the service user’s placement at a generic mental health residential placement was £850 per day compared to £1,800 per week for a specialist residential care placement with autism west midlands. Costing a third of the price of the generic mental health placement, this indicative case study demonstrates that specialist domiciliary care can be more financially efficient as well as well as more effective for the individual.

We recommend that there is some guidance for learning disability and mental health departments to pool budgets together for care assessments for individuals with autism (see also point 4.3(ii) below).

Best Practice: autism west midlands works across eleven local authority areas. One of our early intervention programmes is to provide regular support group meetings for adults on the spectrum. This is an excellent way to manage low-level anxiety or identify what further support is necessary. Unfortunately only three of the eleven local authorities (Birmingham, Sandwell and Solihull) fund these groups and they do so only for residents in their authority.

iii) The second bullet point in this section of the guidance says a community care assessment should be ‘carried out within a reasonable time period if the individual wants such an assessment’ (2010:19).

We recommend the guidance gives an example of best practice for what would be a reasonable length of time and when outcomes set by the assessment are to be achieved.

3.2 If not, what changes would you propose?

Headline Responses: i) As mentioned in point 1.3(ii) of this response, individuals with autism often have problems in seeking help; mainly because difficulty in planning ahead may be a result of having autism.

The third bullet point in this section of guidance says there is a duty to carry out a community care assessment if the person diagnosed ‘requests it’ (2010:19). We recommend that the wording of this is changed to: ‘…if the adult diagnosed requests one for themselves or their carer or advocate requests for one on their behalf’. ii) We recommend local assessment pathways are developed and connected to the diagnostic pathways discussed in point 1.1(ii) above.

3.3 Is there anything else to add that would make a difference?

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Headline Response: i) Many of our consultees experienced community care assessments being done by generic social workers/community nurses who are not aware of what specialist support is available.

Consequently service users often miss out on vital specialist support which could greatly increase the success of care outcomes. ii) Assessment tools and paperwork often fail to pick up on relevant points because they are not autism specific. We recommend that individuals conducting community care assessments receive autism specific training and that assessment tools are developed to take autism specifically into account.

3.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

See points 3.1(i) and 3.2(ii) above.

3.5 Do you have any other comments on assessment of needs for relevant services?

Headline Responses: i) Our consultees felt that community care assessments should be conducted by a multidisciplinary team: including care providers through to funders. This would ensure that the real day to day impact of having autism could be properly discussed and the kind of barriers faced by individuals on the spectrum could be more effectively removed. See also section 1.3(iv)

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4. Planning in relation to the provision of relevant services to young people with autism as they become adults We would like your view on the following questions about the proposed guidance around transitions. Please write your answers in the questionnaire booklet provided.

4.1 Do you think that this guidance explains the responsibilities that local authorities have around transition from child to adult services for young people with autism?

Headline Responses: i) This section of Guidance fails to properly explain the responsibilities placed on local authorities; it does not address the fact that there will be a gap in provision once the Transition Support Programme set up under Aiming High for Disabled Children, established in 2007, ends in March 2011. Steps should be taken to ensure continuity of this scheme rather than wasting resources in replacing a project that is working well or failing to replace it at all. ii) There were concerns about deadlines on transition planning not being met; clear timelines, responsibilities and realistic expectations about transition plans must be produced, adhered to by professionals and made freely available to individuals and their families.

i) It was felt that this section of guidance failed to explain properly the responsibilities placed on local authorities because it does not address the fact that there will be a gap in provision once the Transition Support Programme set up under Aiming High for Disabled Children established in 2007 ends in March 2011. The guidance itself needs to be updated to reflect this fact. When this scheme ends, the funding that ensures transition targets are met and transition is a priority will come to a close and the Transition Information Network (TIN) will remain only in an advisory capacity. Further, the two posts overseeing transition into adulthood have been cut (see autism west midlands, 2009) in Birmingham, leaving Birmingham City Council without a transition lead and this authority without the capacity to continue vital transition work. Our organisation believes that steps should be taken to ensure continuity of this transition scheme rather than wasting resources in replacing a project that is working well or failing to replace it at all. ii) At present transition timelines are not published, by professionals, for individuals and their families; leading to timelines not being met. For example social work guidelines in Birmingham stipulate that an individual, who is known to the disabled children team, on their seventeenth birthday, must be allocated an adult social worker for suitability for adult services assessment. The children’s

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social worker is expected to liaise with the adult social worker during this period. By the time they are seventeen and a half, this assessment must be completed to enable future access to services to be determined to ensure a successful transition. In practice individuals and families are not allocated the social work teams on this timescale and are not even aware that these timeframes exist. Thus clear timeframes around transition should be published to empower young people and their families to monitor this process; improving the access to transition support.

4.2 If not, what changes would you propose?

Headline Responses: i) Transition plans should be mandatory when an individual has received a diagnosis of autism. ii) Transition plans should incorporate autism specific components and should be completed by people with specific autism knowledge. iii) When transition plans are being completed, the individual on the spectrum should always have direct input. The plan must be aspiration based and not driven by financial considerations.

i) Many young people with a diagnosis of autism may not have an SEN, nor may they have had an access to a needs assessment. Very often, informal school and home support networks may mask a series of needs that are only revealed once individuals with autism leave full-time education or move on to higher and ‘Autism is a hidden disability; this further education. It is vital that their transition into adulthood means people don’t always believe is carefully planned. Not only would this reduce the level of that you need help.’ stress related to this period but it would also reduce the (Service User) likelihood of a crisis which can make already complex problems escalate. Therefore we recommend that transition plans are mandatory for all individuals who have received a diagnosis of autism. ii) There are currently no autism specific components to transition assessments. This is problematic because many of the advice and guidance services, such as Connexions and Disability Employment Advisors, are not equipped with specialist autism knowledge themselves and therefore fail to meet the needs of service users. Indeed most local services that were autism specific, such as tenancy support, have become generic services. Therefore we recommend that transition plans should themselves include autism specific components.

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iii) When transition plans are being completed, the individual on the spectrum should always have direct input. Frequently individuals and families are told what support they can get rather than being asked about what they would want and/or need. We believe that the plans should be driven by the individual’s needs and aspirations.

4.3 Is there anything else to add that would make a difference?

Headline Responses: i) There is no specific funding for individuals on the autistic spectrum at this stage. We recommend that some budgets are pooled between the children and adults’ services of mental health and learning disability departments. ii) It is recommended that social workers are given autism specific training as part of their professional qualification and to improve support at the transition stage. iii) As with the sections on diagnosis, assessment and identification above, there is currently no clear pathway through transition services. We recommend a diagrammatic representation of the route through transition services. iv) The importance of family support schemes should be acknowledged here. We recommend family education programmes. v) A clear lead professional for transition planning is needed to work across the authority.

i) The strategy clearly recognises that the purpose of the Autism Act 2009 and subsequent legislation and policy is to ensure that service users with autism do not ‘fall through the gaps’ between mental health and learning disability provision as they do not easily fall into either group. Our practitioners also experienced individuals falling through the gaps of adult and children’s services because children’s services often stop supporting an individual earlier than they should on the assumption that adult services will pick up on the need. In reality there is a time lag between provision by child and adult services, leaving children with autism unsupported during key transition years. As a result it is vital that funding is made available to meet their particular needs. We recommend therefore that budgets are pooled between the children and adult’s services of mental health and learning disability departments to support the transition phase. ii) There is a lack of professional skills sets for those giving support through transition. One such example is the shortage of individuals with autism specific knowledge in social work teams. One day training schemes do not make professionals autism specialists; as recommended elsewhere (see 6.3(i)) they need to receive high level training as part of their qualifying course.

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iii) In the experience of a number of our Residential Care Managers many of the service users they support had had difficulties in accessing initial support after diagnosis. One such Manager observed that ‘about 50% of the transitional age group [were] lost or ignored in the system; which ultimately leads to crisis later on’ (Residential Care Manager). This means that it would be helpful if the guidance emphasised the need for local authorities to explain the options available and signpost these to the relevant service users. It is recommended that this signposting is done in a similar format to the box in section 1 of the guidance. We further recommend a diagram to represent the pathway through transition as recommended above (see points 1.1(ii) and 2.2(i)). iv) The importance of family support networks for individuals on the spectrum is often not recognised in any official capacity. Family members can be empowered in their role by family education programmes which help to guide them through the difficult transition stage. These programmes can help the family to avert crises and enable individuals on the spectrum to achieve their full potential.

We recommend family education in the form of family workshops (see above point 1.3(iii)&(iv) for examples of best practice). v) A clear lead professional for transition planning needs to be identified to work across the authority.

At present no dedicated professional or service is responsible for ensuring the completion of individual transition plans. This often leads to distressing transitions which are ineffective in achieving predetermined outcomes.

4.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

Headline Response: i) Our consultees felt this section was not clearly worded for service users, parents and carers because it alluded to the responsibilities Special Educational Needs Code of Practice (DfES 51/2001) and A transition guide for all services (DCSF & DH reference 00776-2007DOM-EN) contain rather than make this explicit in the guidance. It would therefore be helpful to summarise these responsibilities in relation to the guidance itself.

4.5 Do you have any other comments on transition?

No.

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5. Planning in relation to the provision of services to adults with autism We would like your views on the following questions about the proposed guidance around planning the provision of services for adults with autism locally. Please write your answers in the questionnaire booklet provided.

5.1 Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have around planning for the provision of services for adults with autism?

Headline Responses: Despite the Strategy emphasising that individuals with autism, wherever they are on the spectrum, should get support even if they do not have an accompanying mental health and learning disability (DoH, 2010b), it is unlikely that the contents of section 5 will achieve this in practice. Therefore, we suggest the following solutions: i) As with planning for transition services above, we recommend that some budgets are pooled between adult mental health and learning disability departments. ii) Given that the status of this Guidance means it applies to all local authorities, NHS bodies and NHS Foundation Trusts (DoH, 2010d: 7), including mental health and learning disability services it is essential that these services take positive action to apply the guidance. Thus the wording of section 5 (ibid: 25) should remove ‘encouraged’ and ‘review’ and be changed to the following: ‘All local authorities, NHS bodies and NHS Foundation Trusts who provide mental health and learning disability services must implement the DH guidance about the adjustments to service delivery to better include adults with autism.’ iii) Timescales should be published detailing when the commissioning plans will become available.

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5.2 If not what changes would you propose?

Headline Responses: i) The annual review of these plans is to be welcomed but the access to service should be monitored by the Department of Health Deputy Regional Directors of Social Care and Partnerships (see above at 1.3(ii)).

5.3 Is there anything else to add that would make a difference?

Headline Responses: The move to review the prevalence of individuals with autism is welcomed; however, our consultees believed a number of other developments should be implemented to improve planning at this level: i) There needs to be research into the composition of carers supporting individuals on the spectrum. We recommend that data is sought on the number of individuals, with autism, whose primary carer is a family member and data should be sought on the age range of this group. This would ensure planning around commissioning properly takes into account that many parental carers are themselves an ageing population who may not be able to continue their care role. ii) To ensure that individuals access the right support, we recommend that advocates are available to help guide them through the system. iii) As above, we recommend the production of a diagram to signpost the route through adult planning here.

5.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

See above at point 5.2(ii).

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5.5 Do you have any other comments on service planning?

Headline Response: i) Careful planning which looks at the individual’s specific autism related needs is vital; specialist support tailored to these needs can save money in the long-term.

i) Cost effectiveness should not be the primary objective; however, the message from our consultees was that planning correctly for placements can save money. Planning correctly involves providing autism specific support given by autism specialists. This helps to reduce the problem behaviour which can lead to social exclusion. It is also important to plan with the individual who has autism and with someone who understands autism. This is imperative because autism, like most disabilities, is dynamic not static (Burchardt, 2000) – this means that although an individual will have autism for life their needs will alter from day to day and even from hour to hour because of changing environmental factors. Where the person assessing the individual’s service needs has little or no awareness of the dynamic nature of autism, the service user often misses out on proper support which can lead to future problems (see case study).

Case Study: One of our Managers had experience of an assessment session where the assessor had asked the individual whether they could cook. The individual replied ‘yes I like cooking, I cook spaghetti bolognaise’. As the assessor was about to tick the box, our Manager asked the service user what they did when they cooked; the service user responded that they stirred the bolognaise in the saucepan. It transpired that the mother of the service user chopped and cooked all the ingredients before their son stirred the ingredients. The service user was in fact unable to plan and cook a whole meal without considerable parental support.

This case study demonstrates that autism is diverse and not all individuals will be able to live or work independently. Actually supporting the individual to be interdependent is more important – it involves empowering the individual to use their abilities and self reliance by drawing on the abilities and resources of those around them to help them in accomplishing truly fulfilling and rewarding lives.

We will explore the cost and benefits of issuing guidance to local authorities and NHS bodies that they develop commissioning plans around services for adults with autism. We would therefore welcome examples of how such plans have improved outcomes for adults with autism and whether planning for adults with autism can be integrated with other planning activities. We would also be interested in examples of how local areas have successfully met the needs of adults with autism without developing specific commissioning plans.

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6. The training of staff who provide services to adults with autism We would like your views on the following questions about the proposed guidance around training for NHS and local authority staff. Please write your answers in the questionnaire booklet provided.

6.1 Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have around training for staff?

Headline Responses: Although our organisation is positive about the intent expressed in the guidance to increase autism training, we are disappointed about the ability of the guidance to establish it in practice. The guidance failed to explain the following responsibilities: i) There is no quality assurance about the standard and level of training that should be provided. We recommend that an agreed best practice and criteria of appropriate training for specific staffing grades are developed (see FREDA framework, 2006: 12-36 and appendix 2). ii) In connection to this, the guidance fails to quantify the amount of training and length of training sessions along with desired core curriculum. We recommend the use of clear Intended Learning Outcomes (see fig 1. below). iii) The lack of financial commitment risks reducing the quality of the training and undermines the aims of the strategy. We recommend that an autism specific budget is set within local authorities for training or a proportion of the mental health and learning disability budgets are pooled for autism training. In addition to this, training commissioned by large departments and authorities should be opened up to allow attendance of smaller authorities, departments and organisations. iv) There is no mention of the proper inclusion of service users in the delivery of training. We recommend that service users, where possible, should be included in training.

i) There is no quality assurance about the standard and level of training that should be provided to NHS and social care professionals. We recommend that an agreed best practice and criteria of appropriate training for specific staffing grades are developed to differentiate the level of training required by the particular group of professionals. autism west midlands has developed such an example of best practice in their Differentiated Training Programme for Workforce Development (see

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fig 1. below). This is based on FREDA’S3 training framework which outlines particular competences required of staff working at certain levels (see FREDA framework, 2006: 12-36 and appendix 2). ii) The guidance should specify some core elements, about the nature of autism, which the awareness training should include. As an organisation, we believe the minimum amount of basic awareness training we recommend is a day session with the Intended Learning Outcomes specified in Foundation Training in fig 1. (see below). iii) Our organisation is disappointed that there is no additional guarantee of funding for training and believes this undermines the real power of the strategy to enable individuals with autism to live Fulfilling and rewarding lives. We fear that this will lead to a sidelining of the strategy in practice; with training not being delivered in practice. The lack of financial commitment to increased training across NHS staff is already having an impact on our organisation. We have experienced fewer requests for training from health and social care professionals. We recommend that an autism specific budget is set within local authorities or a proportion of the mental health and learning disability budgets are pooled for autism training. Commissioning for training needs to be thought about creatively, this means local authorities should see where they can create partnerships to buy-in training together and then provide training across their departments and organisations. This would ensure that the maximum numbers of people attend the sessions without minimising quality and content of the training in order to cut cost. It would also mean that small teams working within an authority can attend training funded by larger departments. iv) Given the emphasis upon social inclusion in the Autism Act 2009, the Fulfilling and rewarding lives strategy, I Exist (NAS, 2008) and Every Child Matters policy along with the emphasis on service user consultation in the Disability Discrimination Act 2005 we were disappointed that the guidance made no suggestion of including service users in delivering training to practitioners. The inclusion of service users can be a powerful way for individuals with autism to self advocate and thus express the reality of their experience. Not only does this help trainees to understand the relevance of the training but it can teach providers how to adapt their working practices and give an improved quality of care. This point is evidenced in the feedback provided by a trainee at a session run by autism west midlands, in the following case study.

Case Study: 3

FREDA has representation from educational, health and social care professionals and is chaired by Glenys Jones from the

University of Birmingham.

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During this particular training session John Simpson, a service user with autism, spoke to a team from Advocacy Matters. The trainee, Elaine Day, said that ‘his talk made [her] rethink how [she] support[s] people with autism… the fact that what John says is personal and from his own perspective is what makes his training so interesting and unique, it is so refreshing to hear someone talk about real experiences without the professional jargon, it reinforces why we do this work.

As a consequence of the success of the first training session she attended, Elaine recommended this training to her Chief Executive and went on to say how these sessions provided a forum to ask questions and reflect on individual practice: ‘Everyone found the session most useful… [John] gave us some interesting and thought provoking advice on how best to support the people we advocate for; which in turn has encouraged us with new ideas and ways of working. The work provided by autism west midlands is excellent and much needed’.

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FIG 1: autism west midlands’ Differentiated Training Programme for Workforce Development Level 3: Some staff

Ongoing, intensive contact 1:1 and/or in small groups with individuals on the Autism Spectrum

Level2: Many staff

Probable ongoing but possibly only sporadic contact with individuals on the Autism Spectrum

Level 3: All staff

Potential infrequent contact with individuals on the Autism Spectrum who have a community presence

3 2 1

Three main levels of training needs were identified and it was agreed that ALL staff would require Level 1 training, with others requiring Level 2 and/or Level 3 according to the duration, frequency and nature of involvement in their specific services with individuals on the Autism Spectrum. In addition, a fourth level could be developed for those staff wishing to pursue accreditation.

Level of Training

Target Audience

Intended Learning Outcomes

1.Foundation Training: Primary Care Staff, including Basic autism awareness, in order to GPs, Liaison Workers, CAMHS, identify individuals they come into Mental Health Workers and contact with who may be presenting advocacy service staff with difficulties associated with the Autism Spectrum and strategies to engage appropriately with them 2. Core Training:

Wraparound social and clinical care services, including Education, Police, Probation and Employment staff and Multi Care Network offering access to therapy and treatment programmes

Service specific issues related to individual needs of the person on the Autism Spectrum in particular settings and exploration of general positive approaches that can be used appropriately in those services and settings as required

3. Advanced Training:

Social workers, Support Workers and Administrator working in direct support services with people on the Autism Spectrum on an ongoing basis

More in-depth knowledge of the range of difficulties encountered in individuals on the Autism Spectrum and specific strategies that can be used according to the degree of difficulty being presented and the underlying reasons

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6.2 If not, what changes would you propose?

Headline Responses: A number of additional changes to section 6 of the guidance were suggested by our consultees: i) Concerns were raised that training may only consider the medical model of autism; equally important is to consider social, environmental and behavioural issues. We therefore recommend that the third sector along with parent, carer and user groups must be included in the development of training. ii) The guidance creates a mixed message about specialist autism training; there are real dangers in merging autism training with general equality training. We recommend that a minimum level of autism specific training is given.

i) Our consultees were concerned that only medical models of autism – focusing on the physiological and classic behavioural aspects of autism – would be covered in training rather than properly reflecting upon the realities of day-to-day life for people on the spectrum and the diversity of behaviour across the whole spectrum. Our organisation believes it is vital that individuals on the spectrum are seen as people and not in terms of their diagnosis. Equally important is to consider social, environmental and behavioural issues. Therefore it is essential that when training is developed, the third sector along with parent, carer and user groups must be included in the development of training. The real life experiences of these groups can then inform good practice examples for training; giving health and social care professionals practical strategies they need to respond to people across the spectrum. ii) The guidance gives mixed messages about autism specific training. Some of the language of section 6 expresses a commitment to an increased quantity and improved quality of training but other parts says it is acceptable to tack on autism specific training to other equality training. Autism is a complex condition; our consultees felt there was a moral imperative that training met the particular needs of this group of service users and was not tacked on to generic equality training. The failure of the guidance to emphasise the need for autism specific training means that the opportunity to raise awareness of autism, as emphasised in the Strategy (DoH, 2010b:7; para 8), is lost. Individuals with autism can have problems focusing their attention on people; instead they tend to focus attention on objects, which in some instances are perceived as unusual fetishes. In fact these things can often be special interests which are actually not harmful. However, if the behaviour which pursues these interests is not managed this could leave the individual at risk (see case study below). Therefore, tacking autism on to general equality training dilutes the level of information received by trainees, to the extent that it becomes useless in enabling them to formulate practical strategies.

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Case Study: An individual on the spectrum, known to one of our practitioners, was referred to the local Inappropriate Sexual Behaviour Team within the Youth Offending Service. This was following concerns that he was getting sexual gratification from being on buses or seeing buses as he would often remark: ’that bus is sexy’. This behaviour was distracting him from other activities and seen as inappropriate.

However, through the engagement of a specialist who understood autism, it was quickly identified that the issue was his use of language and not a sexual fetish. Where special interests are misunderstood by health and social care professionals, this behaviour can be stigmatised. As a result the individual can perceive themself as strange; staff members do not develop strategies to enable the individual to express the behaviour more appropriately or in a space that is safe for them and society.

This illustrates the importance of specialist autism training for all frontline staff; particularly where certain professionals, such as Community Practice Nurses and other mental health specialists, are likely to work with people on the spectrum in intense circumstances. We therefore recommend specialist training such as the example of best practice outlined below in fig 2.

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Fig 2. Learning and Professional Development Services Training Day Sexuality and Relationship Issues and Autism Course Aims : • • • •

To explore what is known about how ASD impacts on the sexuality of individuals and on their ability to develop relationships right across the spectrum of intellectual ability To identify some reasons why people with ASD have difficulties in the area of sexuality and relationships To identify strategies to help support individuals with ASD understand themselves better and their sexuality as part of who they are To identify strategies to help individuals with ASD have a better understanding of different kinds of relationships

Learning Outcomes: • •

Participants will have a better understanding of issues around sexuality and relationships for people with ASD Participants will take away some ideas to help support people with ASD more effectively in this area of development

Outline of Course Content: • • •

The issues when looking at sexuality and ASD as expressed by people with ASD themselves and in research The problems and difficulties that exist for people with ASD and the people who work with them in relation to sexuality and relationships An opportunity for sharing experiences and problems, asking questions and exploring useful strategies that may help

6.3 Is there anything else to add that would make a difference?

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Headline Responses: A number of other key points were made about what would improve the likelihood that training really would enable individuals with autism to live fulfilling and rewarding lives: i) As mentioned in section 2.3(i) we recommend that training around autism should occur as early as possible for professionals working in health and social care as a compulsory part of their curriculum. ii) The guidance should stipulate that training should be done through accredited agencies and conducted by autism specialists. iii) In order to ensure the quality of training is maintained and is consistent across the region and NHS staff, we recommend that training should be monitored and coordinated above the local level by the Department of Health Deputy Regional Directors of Social Care and Partnerships.

i) Many of our consultees felt that understanding autism and supporting individuals on the spectrum should be an integral part of the professional qualification for health and social care professionals with a specific course percentage allocated to this. These professionals should also have to demonstrate competency in this understanding. For those professionals who are already qualified to practice we recommend that specialist autism training is part of their professional development with accompanying credits and CPD points. Some examples of where autism west midlands has been able to provide training with accompanying credits and CPD points are given below.

Best Practice: Delivery to key health, education and social care professionals • Lecture on working with families of individuals on the autism spectrum to 2nd year medical students at University of Birmingham • Lecture on autism awareness to medical students and (separately) to paediatricians at University of Coventry • Keynote address, along with an individual on the autism spectrum, to Royal Society of Medicine conference (attendees gained CPD points) • Autism awareness training for CPS (carries CPD points from the Law Society) • Accredited certificate course (3 modules) in working with people on the autism spectrum through the University of Worcester.

• Autism training course for nursing staff on adolescent psychiatric unit • Autism awareness for social care staff in residential care homes, respite facilities

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ii) There was a great deal of concern that autism training would be given by generic training providers.

We believe training should be delivered by autism specialists and that an accreditation system should be devised to maintain the quality of these training providers. iii) In order to ensure the quality of training is maintained and is consistent across the region and NHS staff, we recommend that training should be monitored and coordinated above the local level. This could be done by the Department of Health Deputy Regional Directors of Social Care and Partnerships.

6.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

See above at 6.2 (ii).

6.5 Do you have any other comments on training?

Headline Response: Many of our consultees thought it was never too early to raise the awareness of autism in our society. Therefore, awareness raising schemes should be conducted in primary and secondary schools as this would greatly improve the social inclusion of individuals with autism; with this knowledge base the Strategy in Fulfilling and rewarding lives could continue to be achieved in the long-term.

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7. Local arrangements for leadership in relation to the provision of services to adults with autism We would like your views on the following questions about the proposed guidance around local leadership in relation to the provision of services for adults with autism. Please fill in your answers using the questionnaire booklet provided.

7.1 Do you think that this guidance sets out sufficient information to support local leadership relating to the provision of services for adults with autism?

Headline Responses: The re-statement that local authorities should ensure that there is a joint commissioner/senior manager in every local authority with a portfolio for adults with autism is encouraging but this section lacks sufficient information. Many of our consultees had experience of this not happening consistently across authorities and when such commissioners/senior managers were in place, they lacked real strategic power and funding. Therefore we recommend additional information to support local leadership: i) To enable the local leaders to be able to fulfil their role in practice, it is vital that the guidance outlines the kind of resources and decision-making power these leaders should have in more detail. ii) The guidance must stipulate that each local authority should name these leaders with portfolio and commissioning responsibility for adults with autism4. This should be widely publicised both within internal NHS and social services communications and externally amongst third sector organisations, service users, families and carers. iii) This section of the guidance was weak in relating the leadership at a local level to the developments in diagnosis, identification, assessment, planning and training that are outlined in the rest of the document. We therefore recommend the guidance should give more information about how/whether this local leader would oversee these developments and ensure they are properly implemented.

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autism west midlands is currently working with the National Autistic Society to compile a list of local leads in the The West Midlands, which covers 14 local authorities, because at present many of these areas are either unsure of who this lead is or have not yet delegated this role.

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7.2 If not, what changes would you propose?

Headline Responses: i) Local leaders with a portfolio and commissioning responsibility for adults with autism must, ideally, already have autism specific knowledge. Where they do not already have such knowledge, the guidance must require these individuals receive training to a pre-determined standard during their role (see section 2.3 (ii)). ii) Further, in order to ensure that these local leaders are appointed and their role is properly fulfilled, we recommend that they are monitored by the Department of Health Deputy Regional Directors of Social Care and Partnerships to ensure compliance and consistency across authorities.

7.3 Is there anything else to add that would make a difference?

Headline Responses: Other additions to this section would improve the local arrangement for leadership in relation to the provision of services to adults with autism: i) The word ‘consider’ in the second paragraph of the guidance should be removed and replaced with ‘must establish’. Our organisation sees the local autism partnership boards as vital to providing a feedback system (see example of best practice below). The wording should be changed to the following: ‘Local authorities and NHS bodies must establish local autism partnership boards, looking in particular at the example of learning disability partnership boards and the benefits they can deliver for individuals and services.’

This will ensure: a) that the developments included in the guidelines are making marked improvements to service users on the spectrum in practice; b) that continual improvements to health and social care services for this group are made. ii) Where a joint commissioner/senior manager is not yet in place, the guidelines need to outline where NHS and social care practitioners can go to have direction on commissioning for autism. We believe that to maximise the benefit of the National Autism Programme Board, there also need to be clear channels of communication between local level practice and national decision-making.

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Headline Responses (7.3, continued): iii) There was no clarity about the timeline for when local managers/commissioners for autism should be in place. We recommend the goal should be to put these local leaders in place by the time NICE’S guidelines are published at the end of 2011.

Best Practice: An example of good practice in this regard is the steering group set up by the Walsall Learning Disability Partnership Board. A member of this board got key internal stakeholders from a number of different departments involved and invited members of the third sector who were doing work locally.

They set up an awareness raising event which involved a workshop around autism and the Fulfilling and rewarding lives strategy. Attendees have subsequently been invited to attend a local steering group which will look at how the local authority can most efficiently implement the guidance and raise awareness of autism.

7.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

See above at points 7.1 (ii) and 7.3(i).

7.5 Do you have any other comments on local leadership?

Headline Response: i) As discussed above, in 7.1.ii), at present it can be difficult to trace the joint commissioner/ senior manager with responsibility for autism in a given local authority where such individuals do exist. We therefore recommend that a list of current individuals and their contact details are published both within internal NHS and social services communications and externally amongst third sector organisations, service users, families and carers.

We will also explore the cost and benefits of issuing guidance to local authorities and NHS bodies that they appoint a joint commissioner/senior manager who has in his/her portfolio a clear commissioning responsibility for adults with autism. We would therefore welcome examples of how local areas currently ensure there is local leadership around commissioning services for adults with autism – for example, whether it can be added as an additional responsibility of a lead professional in other areas, or whether a dedicated member of staff is required.

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Table of Statutes Autism Act 2009 Disability Discrimination Act 1995 Disability Discrimination Act 2005 Equality Act 2010 Mental Health Act 1983

Bibliography Autism west midlands (June 2009), ‘Transition Service Update Report’, Internal Publication.

Bradley, K., (2009a), ‘The Bradley Report: Lord Bradley’s review of people with mental health problems or learning disabilities in the criminal justice system’, Produced by COI for the Department of Health Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_ 098694 South Birmingham Primary Care Trust (2004), ‘An Integrated Care Pathway for People with Autism Spectrum Disorder Implementation Document’ (Draft only).

Burchardt, T. (2000), ‘The Dynamics of Being Disabled’, Journal of Social Policy: 29, 645-668.

Department of Health, (2010a), ‘Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care Guidance on Eligibility Criteria for Adult Social Care, England 2010’, First published February 2010 Published to DH website, in electronic PDF format only.http://www.dh.gov.uk/publications Department of Health, (2010b), ‘Fulfilling and rewarding lives: The strategy for adults with autism in England (2010)’, First published March 2010 Published to DH website, in electronic PDF format only www.dh.gov.uk/publications Department of Health, (2010c), ‘Towards "Fulfilling and rewarding lives": The first year delivery plan for adults with autism in England’, Published to DH website, in electronic PDF format only. http://www.dh.gov.uk/publications Department of Health, (2010d) ‘Implementing “Fulfilling and rewarding lives”

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Consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy’, First published July 2010 Published to DH website, in electronic PDF format only.

FREDA, 2006, ‘autism spectrum disorders: training policy and framework’, published in Coventry: West Midlands Regional Partnership.

National Autistic Society, (2008), ‘I Exist’, London: The National Autistic Society.

Tregaskis, C. (2002) ‘Social Model Theory: the story so far…’, Disability & Society, Vol. 17, No. 4: 457–470 UPIAS (1976) Fundamental Principles of Disability (London, Union of the Physically Against Segregation) Welsh Assembley, (2007), The Autistic Spectrum Disorder (ASD) Strategic Action Plan For Wales, Consultation Document, (Annex 1: 45-48) Western Health and Social Services Board (WHSSB), (2007: 49), ‘Spectrum for Change’: A strategic Framework for Autistic Spectrum Disorders in the West,

Impaired

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About you We want to make sure that this consultation reaches as wide a group of people as possible. To help us understand more about the people who respond, we would like you to answer the questions below. You do not have to answer any of them but your answers will help us work out whether we need to consult further.

Any answers you give will be treated in line with the confidentiality principles set out below.

Do you work in health or social care?

Yes – health [ ] Yes – social care [ ] No [ ]Do you have autism, Asperger Syndrome or any other autistic spectrum condition?

Yes – autism [ ] Yes – Asperger Syndrome [ ] Yes – another autistic spectrum condition [ ] No [ ] Are you the parent or carer of a person with autism?

Yes – parent [ ] Yes – carer [ ] No [ ] Which sex are you?

Female [ ] Male [ ] Transgendered [ ] Rather not say [ ] How old are you?

Under 18 [ ] 18–24 [ ] 25–34 [ ] 35–44 [ ] 45–54 [ ] 55–64 [ ] 65–74 [ ] Over 75 [ ] Rather not say [ ] Which ethnicity are you?

Asian/Asian British – Indian [ ] Asian/Asian British – Pakistani [ ] Asian/Asian British – Bangladeshi [ ] Asian/Asian British – Other [ ] Black/Black British – Caribbean [ ] Black/Black British – African [ ] Black/Black British – Other [ ] Chinese [ ]

White – British [ ] White – Irish [ ] White – Other [ ] Mixed – White and Black Caribbean [ ] Mixed – White and Black African [ ] Mixed – White and Asian [ ] Mixed – Other [ ] Other [ ] Rather not say [ ]

Do you consider yourself as a person with a disability?

Yes [ ] No [ ] If Yes, please specify below:

Where do you live?

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North East [ ] North West [ ] South East [ ] Yorkshire and the Humber [ ] West Midlands [ ] East Midlands [ ]

East of England [ ] South West [ ] London [ ] Wales [ ] Outside England and Wales [ ] Rather not say [ ]

If you are responding on behalf of an organisation or interest group, please indicate the name of the organisation:

autism west midlands Your role within the organisation: Chief Executive Officer Thank you for your help with our consultation.

Timings The consultation will run for a period of 12 weeks from 29 July 2010 to 22 October 2010.

Process Respondents are invited to complete the questionnaire booklet and return it to: Adults with Autism Statutory Guidance Consultation Department of Health Unit 124 Wellington House 135 -- 155 Waterloo Road London SE1 8UG Alternatively you can submit your views by emailing us at autism@dh.gsi.gov.uk. Printed copies of this document and the questionnaire are available on request by email or through this postal address.

The Department of Health will be making available a toolkit to support local organisations and groups to run their own events. Further details about events and information can be found on our website, www.dh.gov.uk/en/consultations.

You may also wish to contact your local authority or local autism organisation about events that they may be holding in your area.

Remit

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This consultation and the final statutory guidance relate to England only. Services for adults with autism in Scotland, Wales and Northern Ireland are the responsibility of the devolved administrations.

The Welsh Assembly Government has its own Strategic Action Plan for Autistic Spectrum Disorders (ASD), which was published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland, while in Scotland the ASD Reference Group completed its work by publishing guidance to local agencies on commissioning services for people with autismi.

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Comments on the consultation process itself If you have concerns or comments which you would like to make relating specifically to the consultation process itself please contact: Consultations Co-ordinator Department of Health 3E48 Quarry House Leeds LS2 7UE email: consultations.co-ordinator@dh.gsi.gov.uk Please do not send consultation responses to this address.

Confidentiality of information We manage the information you provide in response to this consultation in accordance with the Department of Health's Information Charter.

Information we receive, including personal information, may be published or disclosed in accordance with access to information regimes (primarily the Freedom of Information Act 2000 (FOIA), the Data Protection Act (DPA) and the Environmental Information Regulations 2004).

If you want the information you provide to be treated as confidential, please be aware that under the FOIA, there is a statutory code of practice which public authorities must comply with and which deals, among other things, with obligations of confidence. In view of this, it would be helpful if you could explain to us why you regard the information you have provided as confidential. If we receive a request for disclosure of information, we will take full account of your explanation, but we cannot give an assurance that confidentiality will be maintained in all circumstances. An automatic confidentiality disclaimer generated by your IT system will not, of itself, be regarded as binding on the Department of Health.

The Department of Health will process your personal data in accordance with DPA and in most circumstances this will mean that your personal data will not be disclosed to third parties.

i

The Scottish Government (2008) – Commissioning Services for People in the Autism Spectrum: Policy and Practice Guidance