Joint Commissioning Strategy for Adults with Asperger Syndrome

Joint Commissioning Strategy for Adults with Asperger Syndrome 2010-2013 Westminster City Council NHS Westminster 1

CONTENTS Executive Summary 1. Background and Policy Context 2. Purpose of the Strategy 3. Current Services 4. Needs Assessment 5. Gaps in Services 6. Commissioning Intentions 7. Action Plan and Implementation 8. Workforce Implications 9. Quality and Performance (inc clinical governance arrangements) Appendices Appendix 1 Action Plan Appendix 2 Needs Assessment Appendix 3 Map of Current Services Appendix 4 Appraisal of Options Appendix 5 Care Pathway and Protocol Appendix 6 Menu of evidence based services for people with high need Appendix 7 Asperger Syndrome Service Appendix 8 Autism Act 2009 Appendix 9 Common characteristics of people with Asperger Syndrome 2

Executive Summary Asperger Syndrome is a life long condition which leaves many people with the condition vulnerable in adulthood. Some practitioners assume that people with Asperger Syndrome are supported by learning disability services. In practice there is no agreed pathway into services and most people with the condition are not eligible for either learning disability or mental health services. Consequently, they fall through the gaps in services and rely on parents, families or their partners for support. People with Asperger Syndrome have average, or above average, intelligence (IQ>70) therefore it is often assumed that they do not require services. In reality, their autism can be severe and disabling. Yet, some people are unable even to access a screening assessment on the basis of their diagnosis and IQ level. The new Autism Act 2009 will bring a new, sharper focus to the responsibilities of the council and local NHS bodies. In 2010 the government will issue a National Autism Strategy and accompanying statutory guidance under which councils and NHS bodies will be required to act. There will be a clear expectation that people's needs will be assessed across the whole autistic spectrum, services planned and diagnoses made available. It is estimated that there are around 1000 people in Westminster aged 18 and over with Asperger Syndrome or High Functioning Autism. It is likely that the majority of these people are undiagnosed. Only a small number (approximately 15) currently receive services due to a combination of their high needs and a breakdown in family support. Others accessed learning disability services prior to the tightening of eligibility criteria to those with an IQ of under 70, but would not now be eligible for services. National estimates indicate that only 18% of adults with Asperger Syndrome are in paid employment. With the exception of the small number with high needs, the majority of people with Asperger Syndrome will require low level preventive services to maximise independence and prevent a breakdown of family support. The key needs of this group are: help with obtaining and maintaining employment, practical help with daily tasks such as correspondence, shopping, cooking and travel, socialising opportunities, help with improving social skills and support with undertaking further studies. Without the appropriate preventative supports in place those with a current low need could escalate to potentially require high cost intensive support in the future. Especially if there is a breakdown in family support. This strategy proposes developing a new preventive service to provide diagnosis, information and advice and signposting into an enhanced range of support services. At the centre of the new preventive service would be a small specialist Asperger Syndrome Team possibly operating across three boroughs. This team would receive all referrals (including self referral) and offer an initial screening assessment, and, if needed, a diagnosis, referring those who appear to meet eligibility for a care managed service to the relevant specialist team. Some existing services will widen their eligibility to include people with Asperger Syndrome, in particular, Westminster Employment. Access to mainstream services by people with Asperger Syndrome will be 3

enhanced by creating lead officers in relevant services who will receive autism awareness, or specialist, training and form a community of practice to build expertise within these services and across the council and the NHS. If resources cannot be secured for a new specialist Asperger Team then it is proposed that a pathway and protocol is established in which the Westminster Learning Disability Service receives referrals and conducts screening assessments. The Partnership would care manage eligible cases and signpost others who do not meet eligibility criteria into expanded preventive services. Those who meet eligibility criteria and have complex needs together with high risks would be care managed within CMHTs as now. 4

1. Background and Policy Context 1.1 Many people with Asperger Syndrome or High Functioning Autism 1 face unequal and inconsistent responses from health and social care services. Many are losing out because of a lack of a clear local strategy and care pathway. Others are losing out as a result of lack of knowledge amongst practitioners about their condition. Many are vulnerable and face social exclusion. 1.2 People with Asperger Syndrome are inappropriately referred into already overstretched mental health and learning disability services, but do not meet the criteria for these services. As a result they fall through the net. 1.3 This strategy is based on evidence drawn from a needs assessment of people with an autistic spectrum condition produced as part of the joint strategic needs assessment. People with both an autistic spectrum condition and an IQ below 70 are covered within learning disability services and strategies for this group. This strategy, therefore, focuses on those people on the autistic spectrum who are higher functioning. 1.4 Asperger Syndrome is a pervasive development disorder. It is a lifelong condition on the autistic spectrum, which affects the way a person communicates and relates to others. People with Asperger Syndrome have average, or above average, intelligence (IQ>70) and often appear to have minimal needs. However, in reality, many have difficulties in coping with everyday life. People with Asperger Syndrome tend to have difficulties with social relationships and limitations on social imagination and flexibility of thought. (see Appendix 9 for more details about the condition). 1.5 Aspergers Syndrome is not a medical condition; therefore people with the condition do not necessarily need health care or personal care for the condition. They do, however, often need other help to achieve full independence and this may be best served by a wider range of services including help to obtain and retain employment, help to access leisure activities or supported housing to help them live independently. Often people with Asperger Syndrome have difficulty with everyday tasks such as cooking, shopping, using public transport and paying bills. Commissioning therefore needs to embrace a wide range of services and secure innovative arrangements to enable people with Asperger Syndrome to access them. Not only will this improve the quality of life for people on the autistic spectrum, but also improve the quality of lives of those, usually parents, who help to look after them. 1 There is some debate whether Asperger Syndrome and High Functioning Autism are two separate conditions. Whilst there are differences in childhood development, the two conditions largely impact in a similar way in adulthood. Therefore, for simplicity, the term Asperger Syndrome is used throughout this strategy to cover both conditions. The term High Functioning Autism can be misleading, whilst people with the condition have average or above average intelligence, their autism can be as severe as anyone across the whole spectrum, with implications for social functioning. Further information is provided in Appendix 2. 5

1.6 In a small, but significant, minority of cases people with Asperger Syndrome can become vulnerable and isolated. They may become a risk to themselves and others, or develop mental health problems. DH is currently reviewing the Fair Access to Care guidance on eligibility to social care services. Draft guidance issued in July 2009 emphasises that eligibility for services must be set within a context of the needs of the wider population who will still require a level of support to prevent loss of independence. The CSCI (now part of CQC) has demonstrated that raising eligibility thresholds can lead to a short term dip in eligible cases followed by a longer term rise. 1.7 Some people with Asperger Syndrome can live relatively independent lives and not require any support services. Whereas others may require more intensive, longer term support. Many adults with Asperger Syndrome require a low level of support to access employment and live independently and need guidance and help with social integration. If they don t get this help there is an increasing risk of deterioration and greater pressure on existing services in the long run. It is clear that services for adults with AS are few and far between and there are no structures within Local Authorities to provide Asperger specific support as a statutory duty. As a result it is extremely likely that a high proportion of adults with AS who require support are either being supported inappropriately, or not being supported at all Luke Beardon and Genevieve Edmonds A National Study on the Needs of Adults with Asperger Syndrome, 2007 1.8 In November 2006, DH published Better Services for People with Autistic Spectrum Disorder which clarified expectations of service delivery for adults on the autistic spectrum. The guidance spelt out an expectation that health and social care services would take action to address the issues facing adults with Asperger Syndrome. It identified the need for statutory services to work more closely together to develop strategies and plans which provide appropriate care. 1.9 The Autism Act 2009 received Royal Assent on the 12 th November 2009. It will be implemented in early 2010 (see Appendix 9). The Act requires the Secretary of State for Health to publish an adult autism strategy and to issue associated statutory guidance. Local authorities and NHS bodies will be placed under a duty to act under this guidance. There is an indication that the national strategy will require the development of local Asperger Syndrome services. 1.10 This strategy will ensure that Westminster City Council and NHS Westminster are able to respond positively to the new legislation and the national strategy when it is published. This strategy will provide an appropriate and proportionate response to both developments. 6

2. Purpose of the Strategy 2.1 This strategy aims to develop services in Westminster which: a) help people with Asperger Syndrome, and their families who support them, to maximise independence b) prevent future need for intensive services c) remove any barriers to the participation and inclusion of people with Asperger Syndrome in their community to enable them to maximise their potential and exercise choices d) clarify roles and ensure that there is a seamless multi-agency response to planning, assessment and interventions for people with Asperger Syndrome In addressing these aims the strategy seeks to secure personalised services in which service users and cares exercise choice and control over the services they receive and are involved in the planning and development of these services. Formatted: Indent: Left: 20 pt, Numbered + Level: 1 + Numbering Style: a, b, c, + Start at: 1 + Alignment: Left + Aligned at: 52 pt + Tab after: 70 pt + Indent at: 70 pt 2.2 The strategy primarily covers Health and Social Care services, but also other council services: housing, employment support, leisure, information, advice and guidance where they can help achieve the aims of this strategy. 2.3 The strategy covers Adults only, but also transition from children s services 2.4 There are strong cost- benefit arguments for delivering this strategy: a) as there is no specific services for this group at present, it is thought that a small number of people are receiving higher cost care than is necessary b) there are costs to the wider public sector, especially welfare benefits for those who are not working c) most people will only require low level input which, if provided, would help avoid crises and the need for highly intensive services later The National Audit Office conducted a value for money study of Autism services in 2009 2. The study constructed a strong argument for investing in support services for people with Asperger Syndrome. The NAO argues that savings to the public purse can be achieved by providing support to 4%, or more, of the local Asperger Syndrome population. These savings accrue from reductions in benefits resulting from higher rates of employment, lower levels of mental health care and lower cost care packages. 2.5 This strategy provides a response to national policy arising from the Autism Act and national performance monitoring requirements. The CQC Self Assessment, part of the annual assessment by CQC used to determine the annual rating awarded for each LA, last year included a specific question around autism: 2 Supporting People with Autism Through Adulthood, National Audit Office 2009 7

2LD0190 - Adults with Autism Spectrum Disorders - Please give details of your needs analysis for this group and what services are available specifically for this group. The PCT self assessment for learning disability requests information on the development of a local multi agency commissioning strategy for adults with Autistic Spectrum Conditions. 8

3. Current Services 3.1 The NHS and Community Care Act 1990 requires that adults in need should receive a multi-agency assessment which can result in a care plan that is monitored and reviewed if eligibility for services is established. The meaning of eligibility is clarified in statutory guidance, Fair Access to Care, DH 2003. Locally, the eligibility threshold for learning disability services is, generally, set at IQ lower than 70 and for secondary/tertiary mental health services a severe and enduring mental health problem. People with Asperger Syndrome do not, therefore, generally meet either eligibility criteria. This does not, necessarily, mean that they are not entitled to an assessment. The Fair Access to Care Guidance requires that eligibility is initially determined by a screening assessment. In practice, people with Asperger Syndrome are sometimes screened out before a FAC screening assessment. Others receive a screening assessment and are informed that they are not entitled to services and receive no help or information. There are a small number of people with Asperger Syndrome whose needs are clearly high and consequently they meet the eligibility criteria for community care services and currently receive a care package through the Community Mental Health Teams. The DH 2006 Better Services guidance on autism stresses that IQ may be used to better understand how to support someone, but not to decide on eligibility. People with autism and a learning disability will generally meet the eligibility criteria for learning disability services. 3.2 Some people with Asperger Syndrome have an accompanying mental health problem or physical disability and might, therefore, currently be eligible for care managed services. Others are reliant on support from the voluntary sector or services other than health and social care. A list of the services currently available to people with AS/HFA living in Westminster can be found at Appendix 3. None of these services are funded or commissioned by the City Council or NHS Westminster - other than those for the small number of people meeting the eligibility criteria for community care services or secondary/tertiary mental health care. 3.3 NHS Westminster funds a small number of specialist diagnoses at the Maudsley Hospital, or the NAS diagnostic centre, on a spot purchasing basis. There have been up to 5 of these a year at an average cost in the region of 2,000 each. 9

4. Local Needs Assessment 4.1 There is limited data available locally on people with Asperger Syndrome. It is only possible to estimate the potential number of people with the condition using national and international prevalence studies. There is some quantitative and qualitative information available about the small number of users of selected services. A summary of the local needs assessment can be found at Appendix 2. The full needs assessment has been prepared as part of the Joint Strategic Needs Assessment and covers all autistic spectrum conditions. 4.2 Based on international prevalence studies it is estimated that 1 in 100 people are on the autistic spectrum, of which 50% fall above the IQ 70 threshold and are therefore high functioning (NAS 2009). This suggests that there could be 1030 people aged 15 and over in the city with Asperger Syndrome. There is a ratio of 4:1 of males to females. The prevalence rate has been steadily rising over the past twenty years suggesting that more people are aware of the condition and also more people are being diagnosed. Added to this, the rising population in the city suggests that the absolute number of people with AS will increase over the next 20 years. 63% of people with an Autistic Spectrum Condition registered with GPs are aged under 18, suggesting a rapid rise in adult numbers in future. Taken together, these trends suggest that we can expect a steady increase in the number of cases requiring a diagnosis and/or an assessed care package over the next two decades. 4.3 Semi structured interviews have been conducted with a small sample of people with Asperger Syndrome and some of their parents. From these interviews a consistent pattern of need emerged. The most common areas of need were: help with obtaining and sustaining employment, opportunities to meet people and make friends, practical support to help independent living, including cooking, travel, correspondence and forms, and support to undertake further studies. An improvement in the services available to those with Aspergers Syndrome is also expected to have a positive impact on family members supporting people with this condition 4.4 From this information it is clear that the local Asperger Syndrome population will have a range of needs and a small proportion will not have any service needs. It is possible, therefore, to identify three broad groups of people with Asperger Syndrome and the needs of each of these three groups: (i) those who have high need and are generally able to access services at present, (ii) those with low need who require preventive services and are currently not receiving services and, finally, (iii) those with no need for services. It is estimated that the majority of people with Asperger Syndrome in the borough will fall in the low need group where there are currently no commissioned services. The needs of these three groups and the services which meet these needs are as follows: 10

HIGH NEED Severe and enduring mental health problem Suicidality Physical disability/ageing Offenders Those with severe autistic traits/behaviour LOW NEED Difficulty obtaining work/not working Difficulty maintaining jobs Living with family/dependent on family Unable to cook, shop, maintain personal hygiene, travel independently No friends or social life/isolated lifestyle Difficulty with correspondence, filling in forms, dealing with benefits claims Low understanding of the disorder and how to manage it Unaware that they have AS/HFA and why they have problems Low knowledge of help and services available NO CURRENT NEED No problems with daily life tasks Living independently or in a stable relationship In work HIGH NEED SERVICES 2ry and 3ry mental health services Adult Social Care Teams Forensic MH services LOW NEED SERVICES Employment preparation Employment support Practical support with everyday tasks Practical support with correspondence, forms, benefits Social Skills Training Cognitive Behavioural Therapy Social Clubs/activities Diagnostic assessment Post diagnostic support and information Information and advice on how to live with the disorder Improved awareness and access to mainstream services NO CURRENT NEED No services required 11

4.5 A small number of studies have followed people with Asperger Syndrome. These studies mostly indicate negative outcomes for a large number of people followed into adulthood. The main areas of difficulty were found to be employment, independence and lack of friendships. Most people with Asperger Syndrome do not, however, deteriorate through adulthood. The biggest risk of deterioration in adulthood is the development of mental health problems which are thought to occur in up to 30% of individuals (Hutton 1998). For people with Asperger Syndrome there is no difference in outcomes in adulthood for those with an IQ over 100 than those who have an IQ of 70 99. This suggests that the challenges that face adults with Asperger Syndrome result from their autistic condition and the impact it has on social functioning and not their IQ level per se. Whilst people with Asperger Syndrome have average or above average IQ this can often mask the fact that their autistic traits can be as severe as anyone at the lower functioning end of the spectrum. Verbal and non-verbal communications often improve through adulthood. Social competence also generally improves. Improvement can be further enhanced, however, if adequate support structures and best practice interventions are offered.. 4.6 Programmes to enhance social understanding and improve interpersonal behaviours in adults have been found to have positive benefits. For young adults there is some evidence that: 1. Social skills training, and 2. Social support networks minimise the daily problems faced at work, college and other social situations. Cognitive Behaviour Therapy (CBT) and Applied Behavioural Analysis have shown positive effects on people with Aspergers Syndrome by helping them to cope more effectively with emotional and practical difficulties. CBT also helps with common mental health problems such as depression and anxiety. Success in the job market can be improved significantly by supported employment schemes that teach appropriate work and social skills and help people to obtain and maintain a job. There is a need, in some cases, for specialist services, of this kind, but there is also a wider need for existing services to develop specialist approaches for this group. Deleted: 4.7 Many people with Asperger Syndrome will go through their lives without intervention from services because their support networks are effective. Others will dip in and out of services sporadically seeking small amounts of support. For the majority, access to time limited preventive services offering a combination of employment/occupation, housing and social support will enable them to maintain their independence. 12

5. Gaps in Services 5.1 From the assessment of local needs in section 4 above, and following discussions with service providers and stakeholders the key gaps in services appear to be as follows: Clear referral routes and care pathways for all people with an autistic spectrum condition, in particular for those currently ineligible for a service A multi-agency diagnostic and support pathway which can be accessed from both professional referrals and direct self referral. This should include referrals from mental health services where Asperger Syndrome is co-morbid with a mental disorder Specialist advice for mental health and learning disability practitioners about cases where Asperger Syndrome is diagnosed or suspected Development of expertise in learning disability and mental health services to enable improved support of people with Asperger Syndrome in these services Simplified, widely available and earlier route to diagnosis Training for professionals, including GPs and Police in how to talk to/engage with people with Asperger Syndrome Clear referral routes and care pathways Post diagnosis support and information Support with obtaining accommodation Help with accessing benefits/filling in forms/correspondence Support with getting a job Support whilst in a job to maintain employment Supported employment Support for employers who employ people with Asperger Syndrome Social skills training to combat difficulties in social settings Advocacy, especially with housing crises Housing/independent living for those still living with parents but who wish to live independently Support and information for family members who care for someone with Asperger Syndrome Support to help undertake mainstream further/higher education Transition pathway from school/children s services into adult services Personal skills training for young people preparing for transition into adult services cooking, transport training, shopping, personal hygiene Support for young adults in the leaving care service who also have an Asperger Syndrome condition 5.2 Two of the most frequently mentioned gaps are employment support and diagnosis. 5.3 People with Asperger Syndrome offer many valuable skills to potential employees such as attention to detail, methodical approach, accuracy, numeracy, and good long term memory. There are a number of occupations 13

where these skills are relevant. National studies estimate that only 18% of people with Asperger Syndrome are in paid employment. Yet most people with the condition identify securing employment as their main need, but also acknowledge that they will probably need support to achieve this. Currently, Westminster Employment does not include people with Asperger Syndrome within their service unless they were supported prior to the introduction of the IQ<70 threshold. Ideally, employment support services supporting people with Asperger Syndrome need to have specialist knowledge and skills in this area in order to recognise the specific skills and abilities of this group and facilitate their long term employment. 5.4 It is estimated that the proportion of adults with Asperger Syndrome in Westminster without a diagnosis is high. This is because of the disparity between the numbers of people with the condition identified by local services compared with the estimated prevalence in the city. For people with ASD the key to mental well being lies in prompt and accurate diagnosis (All party Parliamentary Group on Autism). Without a diagnosis they are unlikely to receive appropriate services and may experience feelings of depression and a decline in mental health. Diagnosis will enable local authorities to arrange practical support and life skills training which can empower them to live happy and productive lives at much lower potential cost to the public purse. Diagnosis is also important because: Asperger Syndrome is a recognised disability It helps people make sense of their history and the treatment they have received from others It helps people understand themselves better and make adjustments for their future It helps partners, family, friends and carers to understand and support them better It helps them get more appropriate support from employers, housing, benefits colleges and others There are also cases where Asperger Syndrome has been misdiagnosed as a mental illness leading to potentially inappropriate, costly care based on a mental health rather than Autistic condition. Conversely, people may not be diagnosed at all, receive no help and subsequently decline into serious mental health problems, again leading to costly, potentially avoidable, mental health treatment later in life. 5.5 Consequently, there is a lot of evidence suggesting that access to diagnosis itself is both preventive and therapeutic. Diagnosis can help people with Asperger Syndrome, and their families, to improve their quality of life and live more independently. 14

6. Commissioning Intentions 6.1 People with Asperger Syndrome have a wide range of abilities and needs. The extent to which they require help and support will also depend on the support they already receive from family, friends, spouse and other significant people in their lives. Those who also have severe and enduring mental health problems, or complex needs may be eligible for community care services. It is proposed that this small group should continue to be care managed by the CMHTs due to the complex behaviour challenges and risks they often present, Clinicians working in the relevant CMHT will contribute to diagnosis and assessments for these cases. 6.2 Those who fall outside current eligibility for care managed services may have a need for preventive services to maximise their independence and prevent decline into a situation where care managed services will be required. There is a lack of preventive services within the city. Some appropriate services do already exist, but there is no clarity over eligibility for people with Asperger Syndrome or the pathway into them. Some new services need to be commissioned, whilst other existing services need to widen their access to include people with Asperger Syndrome. Wherever possible, self help and self support should be encouraged. In this respect the National Autistic Society (NAS) plays an important role and this strategy seeks to strengthen the partnership between the City Council, NHS Westminster and the NAS. 6.3 The financial outlook for the next few years is one of tightening funding. Therefore, it is important that the commissioning plans are realistic and sustainable. This is best assured by building on existing services because the numbers of users are likely to be small and can generally be absorbed within existing commissioning budgets or by incurring marginal costs on top of existing, already funded, fixed costs. Where new services requiring additional funding are proposed, these should, ideally, be provided on a cross borough basis because the small numbers would make this more economical. 6.4 The pathway into assessment and services needs to be made clear. The new draft Fair Access to Care Guidance (DH July 2009) stresses the importance of providing preventive services alongside intensive services for those who meet eligibility criteria. The draft guidance states: Councils should not exempt any person who approaches, or is referred to them, from the process to determine eligibility for social care regardless of their age, circumstances or the nature of their needs. To this effect, councils should avoid being too rigid in their categorisation of client groups. Rather, needs should be considered on a personcentered, individual basis. It is proposed that a new specialist Asperger Syndrome Team receives all referrals for screening and refer those with high need who appear to meet the eligibility criteria for care managed services to the appropriate teams for a full community care or mental health assessment. Complex cases with challenging behaviour will be referred to the CMHTs and any other cases to the learning disability teams. For those in the low need group, appropriate prevention services will be either 15

arranged (including diagnosis) or the person signposted and advised of where they might get help by the new Asperger Syndrome Team. The specialist team will therefore sit at the centre of a co-ordinated preventive service for the low need group encompassing: (a) existing services, (b) existing services but with a widened remit or (c) newly commissioned services, as follows: PROPOSED DIAGNOSTIC AND PREVENTIVE SERVICES FOR PEOPLE WITH LOW NEED ASPERGER SYNDROME 11. EMPLOYMENT 12.TRANSITION/ LEAVING CARE 1. ADVOCACY 2. HOUSING Support, coaching, preparation 10. FURTHER AND ADULT EDUCATION 9. WORKFORCE DEVELOMENT Awareness training 13. ASSESSMENT, DIAGNOSIS. SIGNPOSTING, ADVICE, INFORMATION GUIDANCE, CARE CO- ORDINATION, CARER SUPPORT 3. PSYCHOLOGICAL THERAPY 4. SOCIAL GROUPS, MEETING PEOPLE 5. LEISURE AND ACTIVITIES 8. PERSONAL AND PRACTICAL SUPPORT Practical help. Transport, Benefits, correspondence 7. INTERVENTIONS AND THERAPIES TO PROMOTE FUNCTIONING AND INDEPENDENCE 6. CARER /FAMILY SUPPORT 16

6.5 This strategy proposes that these services are provided in the following way: 1. ADVOCACY - The main requirement would appear to be for personalised crisis support with issues like tenancy/housing breakdown. Numbers are likely to be very small, probably low single figures per year. It is proposed that this service is provided by expanding the remit of the current professional advocacy service commissioned from The Advocacy Project (TAP) to cover cases referred involving people with AS/HFA. This would require a review of current TAP eligibility by their trustees and possibly re- negotiation of existing agreements with WLDP. 2. HOUSING There are likely to be a small number of people with Asperger Syndrome whose independence is seriously jeopardised by a need for housing. This will include cases where people have lived with a carer who also provides support and this arrangement is no longer an option. Where someone with Asperger Syndrome has housing problems which it is believed will lead to more expensive supported accommodation, a care package or residential care they should be regarded as a housing priority. In such cases a combination of a tenancy together with low level preventive support could maintain their independence and avoid the need for an expensive and inappropriate care package. The WLDP has an allocation of tenancies a year. In future, it is proposed that people with Asperger Syndrome should be eligible for consideration for these tenancies if they are at serious risk of requiring a care package. For those not eligible, support/assistance should be provided to secure private tenancy. It is also proposed that people with Asperger Syndrome are specifically included in the next Supporting people strategy. 3. PSYCHOLOGICAL THERAPY psychological therapy is provided through the IAPT service for people with common mental health problem such as depression and anxiety. It is known that the prevalence of these conditions is higher for people with Asperger Syndrome than the general population. The IAPT service can provide treatment (for anxiety and depression) for people with Asperger Syndrome, but it may need greater understanding of the condition to ensure that the service is provided appropriately. It is proposed that IAPT services are made accessible to people with Asperger Syndrome who have common mental health problems. A member of the IAPT team should receive autism awareness training to ensure that the service is better able to meet the needs of this group. 4. SOCIAL GROUPS, MEETING PEOPLE a small number of social groups for people with AS/HFA are available in the borough through the voluntary sector. Most of these have a waiting list and some people with Asperger Syndrome are unaware of their existence. It is proposed that the new specialist Asperger team should help 17

people to access these groups, support the providers of these groups and stimulate the development of further groups within the voluntary sector. 5. LEISURE, SPORTING ACTIVITIES AND LIBRARIES At present many people with Asperger Syndrome are invisible customers of these services and there are no special measures in place to help them to access these services. It is proposed that the leisure services contractor, with help from the WLDP workforce development team, and the National Autistic Society, should arrange for customer facing staff to receive autism awareness training as part of regular induction programmes to help them to respond in a more helpful way to customers with Asperger Syndrome. The Leisure and Sport team at the City Council should explore the scope for the development of a special programme for people with Asperger Syndrome in discussion with the proposed new specialist Asperger Syndrome team. It is also proposed that the Library Service should explore the viability of providing reading groups/discussion groups for people with Aspreger Syndrome with the assistance of the proposed new specialist Asperger Team. It is proposed that customer facing staff in Westminster Library Service should also receive autism awareness training. The Library Service could explore the viability of providing reading groups/discussion groups for people with Aspereger Syndrome with the assistance of the proposed new specialist Asperger Team. There may be scope for libraries to help make contact with Aspreger Syndrome through its community notice boards and to use these and its plasma screens to signpost people to appropriate services and opportunities. In addition, it is proposed that the Library service explore the potential to engage people with Asperger Syndrome as volunteers within the service with the help of the proposed specialist Asperger Team. 6. CARER /FAMILY SUPPORT The majority of family members who provide support to people with Asperger Syndrome are not entitled to carer support or assessments as the people they care for will generally not meet the eligibility criteria for community care services. Nevertheless, the care they provide is significant and can sometimes prevent people with Asperger Syndrome from slipping into the high need category. It is therefore proposed that the new Asperger Syndrome Service, in partnership with the WLDP commissioning team should seek to encourage voluntary sector bodies, especially Carers Network Westminster, to provide support, guidance and information to the carers and families of people with Asperger Syndrome who do not meet the eligibility criteria for care managed services. 18

7. INTERVENTIONS AND THERAPIES TO PROMOTE FUNCTIONING AND INDEPENDENCE A selected range of therapies and personal skills development programmes have been shown to help people with Asperger Syndrome improve their personal interaction with other adults and their functioning in social settings There is no evidence that these programmes are currently available to people with Asperger Syndrome in Westminster. It is proposed that the new Asperger Syndrome team will provide individual and group sessions in life skills, social skills and behaviour management based on the best available evidence. Some of these sessions may involve Cognitive Behaviour Therapy and/or Applied Behavioural Analysis which are indicated as being effective therapies for people with Asperger Syndrome. In addition, the proposed Asperger Syndrome Team should explore more practical methods to help people improve social skills including accompanying people into social settings to explain the rules. 8. PERSONAL AND PRACTICAL SUPPORT - this support is likely to be very variable according to the individual and required in infrequent, short bursts (1 2 hours at a time). It will cover a wide range of bespoke practical support including help with correspondence, shopping, accessing leisure activities, and travel and behaviour management. It is proposed that the National Autistic Society receive a grant from the City Council/PCT to provide an ASSIST project in the borough. ASSIST provides practical support and help plus specific support and guidance to individuals from a behaviour management specialist. Formatted: Font: (Default) Arial Formatted: Font: (Default) Arial 9. WORKFORCE DEVELOPMENT Many of the needs of people with Asperger Syndrome can be met by improving access to existing mainstream services. Lack of knowledge within mainstream services about Asperger Syndrome can often be a barrier to accessing these services. This includes an understanding of what the condition is, the challenges it presents to accessing services and how people with the condition can be helped. In terms of customer service people will receive better help if staff in mainstream services know more about where people can go for help - if they are unable to meet their needs within their service. It is proposed that, as part of the development of the living city, autism awareness training should be developed by the Adult and Community Services Department Workforce Development Team and WLDP and made available to an identified lead officer/practitioner, in specified services. These individuals would act as a resource and could provide local expertise and awareness training. They would also be given the opportunity to meet as a community of practice interest and receive updates from members of the specialist team (see below). Services to be covered would include: Adult Care Teams, Learning Disability Team, Community Mental Health Teams, City Guardians, Environmental Health Officers, Library Staff, Leisure and Sports staff, housing officers, further and adult education and 19

Trading Standards Officers. It is also proposed that the PCT review content of professional development programmes and learning events for GPs with a view to enhancing the content relating to autistic spectrum conditions. 10. FURTHER AND ADULT EDUCATION - Local College Special Needs Teams currently make available support to students in their colleges with an Asperger Syndrome diagnosis including learning support assistants. However, there are individuals who do not have a formal diagnosis, but are known to college staff, and it is proposed that these individuals are referred to the proposed new specialist team for diagnosis. In response the proposed Asperger Team should provide advice to college staff on how to help the individuals. It is also proposed that the new specialist team will provide advice to the colleges on students who already have a diagnosis. 11. EMPLOYMENT Westminster Employment provides employment coaching and employment support to people with a learning disability under a service agreement with WLPD. Currently only a handful of people with Asperger Syndrome are supported by this as their involvement pre-dates the current eligibility criteria. It is proposed that Westminster Employment, in future, provide a service to a small number of people with Asperger Syndrome referred by the specialist team. It is also proposed that Westminster Employment seek funding to appoint a specialist Employment Adviser to work with people with Asperger Syndrome in order to further expand support for this group. 12. TRANSITION AND LEAVING CARE There will be a small number of young people with Asperger Syndrome who are in the high need group who will have statements of special educational needs due to the severe nature of their autism. It is vital that the proposed specialist Asperger Team are involved in the transition process for this group who will also benefit from the Multi-agency transition pathway involving specialist Connexions PA s. The majority of people with Asperger Syndrome are assisted by the mainstream Connexions pathway (see Appendix 5) The mainstream Connexions and leaving care teams need to be assisted to provide better services for the users of their services with Asperger Syndrome and become better able to link young people with these conditions aged 19 into the services set out in this strategy. It is proposed that the Connexions Service identify a Personal Assistant (PA) within the mainstream programme who will provide expertise in working with this group. The designated PA will receive enhanced training from the proposed Asperger Team and will link with the practitioners in the proposed specialist Asperger Syndrome Team. Comment [v1]: How access training/funding? Could this be provided in house, by adults or CWD services? 20

There are a small number of young people with Asperger Syndrome who are receiving assistance from the leaving care team. This group are particularly vulnerable, and they are at greater risk than other young people moving into adulthood. It is proposed that the leaving care team, Connexions and the proposed specialist Asperger team collaborate to provide a more specialised response to this group with the nominated Connexions PA (above) also working with this group. 13. ASSESSMENT, DIAGNOSIS, SIGNPOSTING, ADVICE, GUIDANCE, CARE CO-ORDINATION A NEW SPECIALST ASPERGER TEAM - For those who are not eligible for a care managed service a preventive service is required which can help the individuals, and their families, to maintain, and maximise, independence and prevent the need for more intensive community care or mental health services. As the numbers requiring this service are likely to be small, and time limited in most cases, it is proposed that a cross borough team is likely to be most cost effective due to the small numbers. The NAO (2009) report advises that such specialist services should aim to engage 8% of the local Asperger population at any time, half of which (4%) are likely to need support services. For Westminster, this would provide a target of 40 service users. For preventive cases a diagnostic assessment, followed by support and help to access to services, will be the main provision, including advice and guidance to family members. For people with Aspregr Syndrome who are in care managed or mental health services, diagnosis and advice/consultation would be provided by the new specialist team to assist the Care Manager/Co-ordinator to provide the most appropriate care package. Diagnosis will be provided by a Clinical Psychologist trained in a recognised diagnostic tool for adults. As the team will receive self referrals a screening tool should be used in the first instance. The specialist team should also provide training programmes in social skills, life skills and behaviour management, as well as CBT/ Applied Behavioural Analysis sessions, to help people with Asperger Syndrome function effectively in social situations. These programmes will also be time limited. It is therefore proposed that the City Council and NHS Westminster create of a small specialist Asperger Syndrome team jointly with the councils and PCT s in Kensington and Chelsea and Hammersmith and Fulham. A specification for this team can be found at Appendix 7. It is proposed that this team receives all referrals for people with Asperger Syndrome, or suspected AS, and conducts an initial screening assessment. If this screening indicates that the individual might meet local eligibility criteria for a care managed service they should be referred to the relevant team after screening (either a CMHT or learning disability team see care pathway and protocol at Appendix 5). Remaining referrals will, receive preventive support relevant to their needs from the Asperger Team. Where people qualify for a care managed service, personal budgets and person centred commissioning should be used whenever possible. 21

6.6 A cross borough specialist team would be the most cost effective option to develop a new diagnosis and prevention service. However, there are other options for providing an enhanced specialist capacity for meeting the needs of people with Asperger Syndrome. These are: 1. A specialist Team for Westminster only 2. Include people with Asperger Syndrome in a new Vulnerable Adults Team 3. Include new specialist Asperger Posts within the learning disability or mental health teams 4. Add new posts to either the learning disability or mental health teams and spread Asperger cases across the chosen team 5. An enhanced status quo in which care pathways and referral routes are clarified and access to existing preventive services widened to encompass people with Asperger Syndrome An appraisal of these options can be found at Appendix 4. If a cross borough Specialist Asperger Team is not possible then the best alternative is a smaller specialist team for Westminster only. It is proposed that the new Asperger Syndrome team is located in the Westminster Learning Disability Partnership. Formatted: Justified 6.7 If funding cannot be secured for a specialist service it is proposed that the Westminster Learning Disability Service becomes the lead service for Asperger Syndrome cases. The WLDP will offer initial screening assessments and if the FACS criteria are met will care manage these cases or transfer them to CMHT where needs are complex. If FACs criteria are not met the WDLP will signpost people into an expanded range of preventive service, mainly within the voluntary sector. The pathway at Appendix 5 outlines how this arrangement will work in practice. Where people with Asperger Syndrome meet eligibility criteria there needs to be greater clarity and consistency over the care packages they should receive. To help achieve greater clarity and consistency a menu of appropriate services within a care package has been produced. This menu can be found at Appendix 6. If a new specialist Asperger Syndrome Team cannot be funded then a new arrangement for diagnosis should be explored. This would involve re-directing the resources used to purchase out of borough diagnosis to commission Central London Community Healthcare to provide a clinical psychologist resource to provide a local diagnostic clinic. 22

7. Action Plan and Implementation 7.1 Given the limited availability of resources and competition for attention with other needy groups, it is important that there are arrangements in place for maintaining a focus on people with Asperger Syndrome. This will ensure that this strategy is delivered and that this group does not slip back into the gaps between services. To achieve this it is proposed that there will be a designated senior manager who has responsibility for this strategy and for services to this group across the council and the NHS. The lead senior manager will be responsible for ensuring that resources are made available to deliver the strategy. It is also proposed that the multi agency Autistic Spectrum Condition Steering Group should continue to meet on a quarterly basis to oversee implementation of this strategy. 7.2 A detailed, and costed, action plan setting out how this strategy will be implemented is to be found at Appendix 1. Each action will have an identified lead manager who will report to the Asperger Planning Group on progress. The Planning Group will be responsible for monitoring progress and holding lead managers to account. The action plan should be reviewed and amended annually. 7.3 Some of the proposals in the action plan will require additional funding and these costs are identified in the action plan. However, there is a reasonable expectation that most of these costs will be offset by reductions in spending in other areas over the next 3 5 years. The NAO (2009) report argues that a specialist Asperger service would be self funding if a minimum of 4% of the local Asperger population receive support, this would be around 40 people in Westminster. However, this is based on an assumption that there will be savings on out of borough residential placements and benefits. There is only one residential placement in Westminster and the council and PCT cannot itself realise savings in welfare benefits. However, potential savings and funding could be anticipated from: Reducing the cost of current and future care packages supported by CMHT s and learning disability teams as a result of improved assessment and the provision of evidence based interventions. Current care packages in the CMHT s cost an average of 30K. There are 14 care packages at present and replacing one of these care packages with a preventive service would therefore save approximately 30K Diversion from potential mental health secondary and tertiary care as a result of early preventive work and the provision of evidence based interventions Cashable savings of 12 15K a year on current purchasing of specialist diagnosis out of area Charging service users of the specialist team and other boroughs using the diagnostic service. Possible income generated is 7K 23