Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
Autism West Midlands - Summary 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. Many of these services have branches based in Birmingham and provide autism specific support, advice and training for service users, parents, families and carers and professional resident in Birmingham. Across our residential services, we support thirty-one service users with autistic spectrum conditions who are funded by Birmingham City Council; our family outreach team have supported thirty-three family units in Birmingham since October 2009; our Information Helpline have dealt with 1338 enquiries from Birmingham since October 2009; our ASpire team, which provides Asperger Syndrome employment support, have supported 86 individuals from Birmingham during a period of April to December 20101. Our response to the Birmingham Joint Commissioning Strategy for Learning Disabilities Consultation Draft (BJCSfLD) takes a ‘real world’ approach: what is the real world state of affairs for the autism community in Birmingham; what are the problems that need to be solved; how effective will the Strategy be in solving the problems; what additional solutions could be integrated into the Strategy. Autism West Midlands would like to thank all those involved in contributing to this response.
General Points Although we welcome BJCSfLD and many of the actions it outlines, a number of recurring concerns run through our ‘real world’ analysis of it. It is useful to mention these briefly before looking at our response to the individual themes: a) Definition of ‘learning disabilities’ – We appreciate that the definition which has been applied in the Birmingham Learning Disabilities Strategy derives from Valuing People Now, however, our organisation believes this definition is too narrow. The definition does not take account of the wider policy and legal contexts created by The Bradley Report 2009 (below, page 5), the Autism Act 2009 and related policy and statutory guidance. The Autism Act and the subsequent statutory guidance ‘Implementing fulfilling and rewarding lives’ use an ‘umbrella definition of autism’ which includes Asperger Syndrome (DoH, 2010d: 12). As a result of the statutory status of the guidance, which applies to all local authorities, NHS bodies and NHS Foundation
Trusts (DoH, 2010d: 7), including mental health and learning disability services (see below: 5), this definition must be used in its implementation. Therefore, this policy and legal context not only legitimates the use of a broader definition, including individuals with Asperger Syndrome within its remit, but the statutory guidance Implementing fulfilling and rewarding lives requires it (see DoH, 2010d: 7; 12; 25). 1
Here is a breakdown, by individual programme, of the number of individuals from Birmingham Aspire have supported during this period:. Numbers supported through Work Preparation Numbers supported through Access to Work Numbers supported through Future Possibilities Numbers supported through Discussion Groups Numbers supported through Student Support (at Uni) Numbers supported through Employer funding
= = = = = =
Total April - Dec for Birmingham =
1
23 9 22 26 3 3 86
Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
The Autism Strategy Fulfilling and rewarding lives expressly states that the gaps in service provision for people with Asperger Syndrome, caused by a lacuna in Learning disability and mental health department support, are ‘unacceptable’ (DoH, 2010a:19). Including individuals with Asperger Syndrome in BJCSfLD is critical to ensure coherent practice and effective implementation of the autism statutory guidance. If they are not supported by Learning Disability Services, then intervention happens too late when a mental health problem develops and there is a crisis. A system which intervenes early, rather than allowing a drift towards crisis, will operate at a much lower total cost to public funds, and is likely to ensure a much improved quality of life for the person with autism. Autism West Midlands recommends that in the light of the Autism Act 2009, related policy and statutory Guidance, and the Bradley Report 2009, BJCSfLD should expand the definition to include individuals with Asperger Syndrome. b) Even using the BJCSfLD’s current definition of learning disability, which does cover adults with autism who also have learning disabilities, the strategy document does not properly address the issue of co-morbidity of service users who have autism and a learning disability. More needs to be done to reflect how specific actions in BJCSfLD will take into account the complex interaction between these two conditions. c) Actions not words, deeds not thoughts. Many of our consultees felt that the actions suggested in the ‘What we will do’ section were potentially very positive but lacked clarity, tangibility and strategic force. To use project management terminology, many of the actions stated did not set achievable outcomes using the SMART criteria – they were not Specific, Measurable, Achievable, Realistic nor indicated a clear Timescale. Autism West Midlands believes all projected actions should fulfil these criteria in order to ensure effective implementation of BJCSfLD. d) Quality and coherence in training and awareness‐raising. There is an emphasis on training throughout BJCSfLD but no funds are clearly allocated for it. Training needs to have clear learning disability and 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. e) The BJCSfLD needs to be updated to properly refer to recent legislative and policy changes. These include: The Autism Act 2009, related policy and the autism statutory guidance Implementing fulfilling and rewarding lives (DoH, 2010d) and related policy; the Equality Act 2010; the Bradley Report 2009 and Improving Health Supporting Justice (DoH, 2009); Aiming High for Disabled Children, established in 2007, ends in March 2011. f) As the draft of the BJCSfLD was printed in August, our consultees request that the final draft details where services for individuals with learning disabilities in Birmingham may be cut or reduced in the light of the Spending Review of October 2010. g) Given the forthcoming development of the NICE diagnostic care pathways, expected in 2011, and earlier steps taken to develop care pathways in Birmingham (South Birmingham Primary
Care Trust, 2004 (Draft only)) we were disappointed that the BJCSfLD has not used this as an opportunity to create coherent pathways specifically for each theme. We recommend that existing work to develop such pathways is continued and the pathway model is carried through from diagnosis to assessment, transition and beyond. We recommend that such pathways are produced in a flow diagram which names the specialist services and their contact points that are available within the locality.
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
Section Summaries Theme One: Including everyone The real world state of affairs
There is not enough advocacy support available for individuals with learning disabilities and people on the autism spectrum. A number of individuals on the spectrum end up in the criminal justice system, especially those with Asperger Syndrome. Individuals with learning disabilities and people on the autistic spectrum often need specialist advice and guidance in relation to sexual health. Parents with learning disabilities and autism are often separated from their children where better planning and multi-agency working would have helped these families to stay together.
To what extent does the BJCSfLD solve the problems?
BJCSfLD does not give enough detail about the quality and quantity of advocacy. BJCSfLD does not link their strategies around hate crime and work with the Criminal Justice System with the Bradley Report (2009) and Department of Health Delivery Plan. It is not sufficient for Individuals with learning disabilities and people on the autistic spectrum to have equal access to mainstream services. BJCSfLD needs to identify SMART objectives to keep families together.
Real world solutions
Quality and Quantity in Advocacy Provision. Advocacy in services in Birmingham should be measured against examples of best practice. To create better links with the Bradley Report and associated policy, it is vital that the definition used in BJCSfLD is expanded to include individuals with Asperger Syndrome. Individuals with learning disabilities and people on the autistic spectrum need, in addition, specialist services to meet their specialist needs within mainstream services; see for example Mosely Day Care Centre’s Personal Development Programme. Furthermore, professionals, in the position of supporting these individuals in developing their relationships and maintaining their sexual health, must have an adequate level of specialist knowledge in order to properly support them. Where the service users are parents, that both Children’s and Adult’s Services work together to develop a whole family approach. As part of this strategy, that a parallel Common Assessment Framework (CAF) – to that currently used to promote Children’s Wellbeing in Birmingham – is developed for parents with learning disabilities and autism.
Theme Two: Healthy Lives The real world state of affairs
Individuals with autism often have complex health needs arising out of the co-morbidity of autism and other health conditions such as epilepsy. 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. 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?
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
Theme two does not take account effectively enough of the interaction between learning disability and autism and the co-morbidity of autism and other health conditions. The BJCSfLD does not make any reference to improved access to diagnosis for adults with autism, in line with Implementing fulfilling and rewarding lives.
The emphasis on training is lost in the ‘what we will do’ section.
Real world solution
Identification cards should be issued, to health professionals, which have a checklist of signs of behaviour in people on the spectrum and details about where to seek further guidance on issues of co-morbidity. BJCSfLD should properly refer to recent legislative and policy changes arising from the Autism Act 2009 in relation to diagnosis.
Quality differentiated training. An agreed best practice and criteria of appropriate training for specific staffing grades are developed (see FIG 1 BELOW, FREDA framework, 2006: 12‐36 and appendix 2).
Theme Three: Housing The real world state of affairs
Generic providers can lack specialist autism expertise and contractors with a high staff turnover can cause disruption and distress to service users. Service users with learning disabilities and autism often experience social exclusion and isolation. Service users with learning disabilities and autism are more likely to be victims of crime and anti-social behaviour in areas of high levels of affordable housing. For some individuals 24/7 residential support may be the best option to meet their needs. Individuals with Asperger Syndrome also need support to live independently.
To what extent does the BJCSfLD solve the problems?
It does not consider these issues in enough detail.
Real world solutions
The Integrated Commissioning Board should ensure that contactors have a level of specialist knowledge and the level of staff turnover is kept at an acceptable level. A reduction in social exclusion and victimisation can be achieved through the use of local services such as adult education, library and leisure services (ibid) and independent advocates. In line with Fulfilling and rewarding lives, hours should be allocated to individuals with Asperger Syndrome. The ‘What we will do section’ should be clearer about how it will encourage the availability of ‘shared supported living’ (see BJCSfLD, 2010:9).
Theme Four: Employment The real world state of affairs
Individuals with Asperger Syndrome have difficulty accessing and maintaining employment. Individuals with learning disabilities and autism more generally need specialist strategies to stay in employment.
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
To what extent does the Guidance solve the problems?
The BJCSfLD does not reflect the ‘real world’ experience of individuals with Asperger Syndrome.
Real world solutions
Maximising value for money from measures in Theme Four requires the inclusion of individuals with Asperger Syndrome. Wider implementation of specialised employment support for adults with high-functioning autism can improve outcomes and, over time, costs would be ‘outweighed by overall public expenditure savings’ (NAO, 2009: 5). There needs to be a quality assurance system for employment support schemes and specialist training schemes for professionals who provide employment support.
Theme Five: Personalisation The real world state of affairs
It can often be difficult for service users to access assessments and support. autism is not a general learning disability: specific care strategies may need to be incorporated into support plans and the allocation of individual budgets.
To what extent does the BJCSfLD solve the problems?
It does not provide enough detail about providing consistency and high standards in personalisation. It does not deal with the issue of autism specific support.
Real world solutions
Services for individuals with more complex needs that services should be registered with the Care Quality Commission and Supported Living Services should demonstrate that they have met REACH Standards. Autism specific services should demonstrate that they are autism specific acquiring either NAS accreditation or accreditation through the Autism Alliance.
Theme Six: Transitions The real world state of affairs
Young people with autism are often failed by the system in their transition from children’s to adult services
To what extent does the BJCSfLD 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
Quality standards and monitoring. Use You're Welcome quality criteria self-assessment toolkit (DoH, 2009) to help achieve standardised best and clarify who will be monitoring the implementation of this part of the strategy, in order to ensure quality standards are met and adhered to.
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
Apply autism-specific strategies in the PCPs for those individuals on the spectrum who are going through transition (see Hendricks and Wehman 2009). Publish clear transition pathways which are signposted to young people and their families.
Theme Seven: Supporting Family Carers The real world state of affairs
Elderly carers fear for the future of their child with autism. It is difficult for carers to achieve a balance between their caring responsibilities and a life of their own. The care needs of individuals with Asperger Syndrome are often not picked up by social care systems because family carers have mediated their need with their intensive support. They often reach a stage where they can no-longer cope or reach an age where their own health problems mean they are unable to give such intensive support.
To what extent does the Guidance solve the problems?
The aims of this section of the strategy may not be implemented effectively because the language used and actions outlined are too vague.
Real world solutions
There needs to be definite statements of who will be carrying out these actions, how this will happen and on what timescale. Carers are not a homogenous group; information produced for carers should be tailored to the specific care needs of the particular groups of carers. BJCSfLD links in with the Department of Health Reaching out to carers innovation, this aims to ‘support carers to maintain a life of their own alongside their caring responsibilities’. Better data collection on the number of elderly carers of people with autism and learning disabilities. This is another reason that makes it essential for individuals with Asperger Syndrome to be included in BJCSfLD.
Marie Tidball Policy and Legal Officer, Autism West Midlands
Jonathan Shephard Chief Executive Officer, Autism West Midlands
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
Full Response Theme One: Including everyone i) The wording under first bullet point of ‘what we will do’ needs to be clearer. We suggest that the wording is changed to the following: ‘Once new national guidance on advocacy for people with learning disabilities is issued by the Department of Health, the provision of services in Birmingham will be assessed against examples of best practice (building on the review of advocacy provision in 2009)’ ii) The third bullet point of the ‘what we will do’ section needs to explicitly state against what criteria the Independent Mental Advocacy Service will be measured.
iii) The Bradley Report 2009 examined the potential to divert offenders with learning disabilities and mental health problems out of the Criminal Justice System and forms a policy context in which the Birmingham Learning Disability Strategy should also effectively operate. Although The Bradley Report does draw upon the definition of learning disability in the Valuing People White Paper (2001), also used in Valuing People Now (DoH, 2009), it supplements the definition to include ‘learning disabilities and learning difficulties’ (ibid: 20; emphasis added). Lord Bradley argued that the remit was expanded because ‘IQ testing... is felt not to meet the full definition [of learning disabilities] as it does not consider any additional impairment of social functioning’. This would include individuals with Asperger Syndrome. Lord Bradley’s analysis specifically looks at the experience of autistic spectrum disorders in the CJS (ibid: 20; 37). As the autism strategy recognises, ‘there is a clear business case to be made for improving the services available for adults with autism locally, and adopting a more preventative, supportive approach’ (DoH, 2010a: 61). This includes individuals with Asperger Syndrome. Over a period of 4 months our Criminal Justice Development Co-ordinator has responded to 15 incidents of individuals with Asperger Syndrome getting caught up in the Criminal Justice System in the West Midlands. Thus, in order to create a nexus with the work that has come out of the Bradley Report and the intentions set out in Theme One of the Birmingham Learning Disability Strategy (BLDS), covering hate crime and work with the Prison Healthcare Partnership Board, it is vital that the definition used in BLDS is expanded to include individuals with Asperger Syndrome. This is especially important because people with Asperger Syndrome are more likely to live independently or semi-independently and therefore are often very likely to be at risk of being both victims and offenders. iv) Autism West Midlands welcomes the BJCSfLD but believes that to enhance accountability and improve access to services for people with learning disabilities this strategy needs to give clearer detail about the contents of its actions. This is especially important because our service users find cross-referencing policy documents difficult. As a result, the fourth bullet point, which looks at the work which will be done with the Prison Healthcare Partnership Board, should outline the work that is done with Prison Healthcare Partnership Board and explain in more detail how the needs of people with learning disabilities will be catered for in practice. v) Individuals with learning disabilities and people on the autistic spectrum often need specialist advice and guidance in relation to sexual health. Service users with autism are often unable to understand euphemisms (see case study below), do not automatically pick up on the social norms surrounding sexual etiquette and comprehend the inappropriateness of displaying sexual behaviour in public (See Hatton and Tector, 2010). Many individuals on the spectrum have, quite unnecessarily,
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
ended up in the criminal justice system because these issues have not been dealt with properly (Allen et al , 2007). As a result of the problems individuals with autism have with social imagination and social communication (Wing 1981) they are frequently unable to predict other people’s behaviour and intentions; this can make them extremely vulnerable to sexual attack (Allen et al, ibid). As a consequence, it is not sufficient for this group to have equal access to mainstream services to ‘support them in developing developing their relationships, and help them maintain optimum sexual health’ (BJCfLD). These individuals need, in addition, specialist services to meet their specialist needs within mainstream services. Furthermore, professionals, in the position of supporting these individuals in developing their relationships and maintaining their sexual health, must have an adequate level of specialist knowledge in order to properly support them. Our residential services have found the specialist service provided at the Mosely Day Centre extremely useful in supporting service users and we would recommend that this service is used as an example of best practice. They run a 12 week Personal Development Programme dealing with social and personal relationships, friendship and intimate sexual relationship, in 12 half day sessions, primarily for people with learning disabilities. We further recommend that specialist sexual health training is given to frontline professionals such as GPs (see example of best practice below) Case Study A parent of a teenage boy, who was on the autism spectrum, raised concerns about the general sexual education course provided at their son’s school. A method of teaching students how to put on a condom was to get them to practice applying them to a banana. Neuro-typical individuals would be able to understand that the banana was being used instead of a penis. However, after talking to their child, the parent realised that their child had not made this connection in their mind. Using a banana was an appropriate way to demonstrate the application in this context but the significance needed to be more clearly explained to the teenager with autism. This incident demonstrates that sexual health advice needs to be given in a very literal and precise way for someone with autism who cannot understand innuendo or euphemisms.
Example of Best Practice: 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
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
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
vi) We welcome the positive statement in the final bullet point that BCC ‘will work to support parents with a learning disability to live independently with their children’ ( BJCSfLD: 7). Our service managers have experienced parents with learning disabilities and autism being separated from their children where better planning and multi-agency working would have helped these families to stay together. Therefore, to ensure that the statement in BJCSfLD is carried out in practice, we recommend two connected approaches. Firstly, where the service users are parents, that both Children’s and Adults’ Services work together to develop a whole family approach. Secondly, as part of this strategy, that a parallel Common Assessment Framework (CAF) – to that currently used to promote Children’s Wellbeing in Birmingham – is developed for parents with learning disabilities and autism. In the development of this, thought should be given about how the two CAFs can be integrated together so that there is a synthesis between the separate support plans created for both the parent and their child.
Theme Two: Healthy Lives i) Even if Autism West Midlands’ amendment to the definition used in BJCSfLD is put to one side, we believe that the BJCSfLD should properly refer to recent legislative and policy changes arising from the Autism Act 2009. Theme two is specifically relevant in this regard given: a) its emphasis on seeking improved access to health services and better for people with learning disabilities; b) the specialist health needs of those who have a learning disability, under the current BLDS definition, and autism; c) and its emphasis on ‘tough minimum’ training standards for professionals. a) The final draft of the statutory guidance Implementing fulfilling and rewarding lives will be published on December 17th 2010 but the draft version of this guidance makes it clear that it applies to all local
authorities, NHS bodies and NHS Foundation Trusts (DoH, 2010d: 7), including mental health and learning disability services. Part of this means these bodies ‘are encouraged to review the DH guidance about the adjustments to service delivery to better include adults with autism’ (ibid: 25). We therefore recommend that as this review applies to learning disability services, this is a stated action in the ‘What we will do’ section of Theme two of BJCSfLD. Furthermore, given the current economic climate, it is vital that the BJCSfLD makes it clear how funding for the learning disability strategy will be integrated with funding for the implementation of the autism statutory guidance.
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Response to Birmingham Strategy for Learning Disabilities Consultation – 10.12.10 -
b) As NICE will be publishing its clinical guidance for adults with autism in 2011, the autism statutory guidance states that ‘NHS bodies and NHS Foundation Trusts that commission or provide diagnostic and assessment services need to review existing best practice now with a view to establishing how it can be adopted in their area’ (DoH, 2010d: 13-14). To ensure this happens Autism West Midlands recommends that BJCSfLD should detail how it will fulfil this and additional requirements under section 1 of Implementing fulfilling and rewarding lives.
c) Section 2 and 6 of the statutory guidance, Implementing fulfilling and rewarding lives, look at training in relation to raising awareness of adults with autism amongst all health and social care staff (DoH, 2010d: 16; 26 ). BLDS should therefore make it clear how training discussed in Theme two will be integrated into these training requirements of the autism statutory guidance. 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 specific training.
Advice from service users for medical professionals: 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.
ii) When an individual has autism and a learning disability, even under the BJCSfLD’s current definition, there is a complex interaction between the two conditions (Le Couteur, 2010). Theme two does not take account of this effectively enough and fails to capture the specialist health needs for individuals who have a learning disability and autism. Autism-specific strategies may be needed to effectively treat patients with autism in a way that minimises the level of stress involved. For example, it may be appropriate to create access to a quiet room whilst the patient with autism is waiting to be seen. We recommend issuing of identification cards, to health professionals, which have a checklist of signs of behaviour in people on the spectrum and details about where to seek further guidance on issues of co-morbidity.
iii) Autism West Midlands would like the ‘what we will do’ section of Theme two of the BJCSfLD (2010: 8) to better correspond to the earlier section of ‘What will help to make this outcome happen’ (ibid:7). The emphasis on training in this earlier section is lost in the ‘what we will do’ section. A framework for the amount and level of training that will be provided should be central to ‘the work with the wider primary care community... to ensure they are addressing and promoting better health for people with learning disabilities.’ We therefore recommend that an agreed best practice and criteria of appropriate training for specific staffing grades are developed (see FIG 1 BELOW, FREDA framework, 2006: 12‐36 and appendix 2). Again, because of the statutory autism guidance, there should also be autism specific training. Autism West Midlands has developed an example of best practice in their Differentiated Training Programme for Workforce Development (see fig 1. below).
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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 1: 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 GPs, Liaison Workers, CAMHS, Mental Health Workers and advocacy service staff
Basic autism awareness, in order to identify individuals they come into contact with who may be presenting with difficulties associated with the Autism Spectrum. This should lead to 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 . 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. Specific strategies that can be used according to the degree of difficulty being presented and the underlying reasons
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ii) The fourth bullet point of the ‘what will help to make this happen’ (BLDS, 2010: 7), needs to make explicit how this will be achieved and what service users can expect in the light of the Equality Act 2010. iii) We welcome the determination to ensure ‘timely access’ (BLDS, 2010: 8) but our consultees want BJCSfLD to give a statement of what precise timescale this will be.
Theme Three: Housing i) As elsewhere in BJCSfLD, we would like this strategy to use the SMART objectives (see above: 2) in the ‘What we will do’ section of this theme. In particular, we would like more detail about how the Integrated Commissioning Board (ICB) will ‘*s+hape the market to ensure an affordable housing model which offers choice and control as *their+ key objective’ (BJCSfLD: 11). It is important for the wellbeing and specialist needs of service users that, in this process of shaping the market, in order to minimise disruption and emotional distress, the ICB ensure that contactors have a level of specialist knowledge and the level of staff turnover is kept at an acceptable level. ii) Our consultees welcomed the emphasis on choice in this theme; however, felt that as part of ensuring a variety of options in the choice available to them, residential care should not be excluded. Some individuals really do need residential care – it may not be safe for them, or for the community, for them to live anywhere other than residential homes with 24 hour care, seven days a week. iii) As Putting People First recognises, citizens ‘live independently but are not independent; they are interdependent upon family members, work colleagues, friends and social networks’ (DoH, 2007: 3). This document sets an agenda to make ‘the alleviation of loneliness and isolation to be a major priority’ (ibid). Therefore, we would like the ‘What we will do section’ to be clearer about how it will encourage the availability of ‘shared supported living’ (see BJCSfLD, 2010:9). iv) BJCSfLD says that 20,000 of additional hours have been allocated for additional housing-related support ‘to service users with autistic spectrum disorder in accordance with the government’s Fulfilling and Rewarding Lives strategy...’ (BJCSfLD, 2010: 9). The issue of BJCSfLD excluding individuals with Asperger Syndrome, in its definition of learning disabilities, arises again here. Fulfilling and Rewarding Lives says that their strategy wants to focus on 'improving access for adults with autism to the services and support they need to live independently within the community' (DoH, 2010a: 14). As with the more recent statutory guidance, Fulfilling and Rewarding Lives ‘uses the term “autism” as an umbrella term for all such conditions, including Asperger Syndrome’ (ibid: 10; emphasis added). As a result, BJCSfLD will be inconsistent with Fulfilling and Rewarding Lives because no hours are being allocated to individuals with Asperger Syndrome. v) Our consultees raised the concern that the areas in which affordable housing is available often also have high crime rates (see Improving the Lives of Disabled People, DWP et al, 2005: 70). In such areas, individuals with learning disabilities and autism may be more vulnerable to being victims of crime and anti-social behaviour. Part of the solution lies in supporting community participation of individuals with learning disabilities and autism. We recommend that this is achieved through the use of local services such as adult education, library and leisure services (ibid) and independent advocates.
Theme Four: Employment i) Autism West Midlands has 9 years’ experience of supporting individuals with Asperger Syndrome into employment through our ASpire service. Therefore, again, our consultees felt the definition of learning disabilities used in BJCSfLD is exclusionary. The BJCSfLD does not reflect the ‘real world’ experience of people with Asperger Syndrome: such individuals have difficulty accessing and maintaining
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employment. The National Audit Office Report, Supporting People with Autism Through Adulthood, recognised that wider implementation of specialised employment support for adults with highfunctioning autism would require additional expenditure, however, evidence from existing specialised services indicates that these services can improve outcomes and, over time, costs would be ‘outweighed by overall public expenditure savings’ (2009: 5). We therefore recommend individuals with Asperger Syndrome are included in BJCSfLD, to ensure maximum value for money from the measures in Theme Four. ii) Our consultees welcomed many of the listed actions in the ‘what we will do’ section of Theme four (BJCSfLD, 2010: 14) and felt that many contained a level of detail that would benefit other areas of the BJCSfLD. However, some actions require more detail and should be more clearly related to specific amounts of funding to ensure the actions become reality. This is especially important as one action listed - the BCC travel training department – is at risk of losing its funding after the end of August 20112. iii) We welcome the encouragement to expand the market for job coaching. However, we recommend that there is specific service training of professionals who will provide such coaching (see Core Training in ‘Differentiated Training Programme’, above at page 9) and ‘kite-marking’ or a quality standard system is implemented to ensure that coaching services advertised through the catalogue maintain a high standard.
Theme Five: Personalisation i) Our Residential Care Managers said that ‘in reality it is impossible to contact a duty social worker’, therefore they were worried that the ‘support plans’ (BJCSfLD: 16) may not happen in practice. This concern was not allayed in the ‘what we will do’ section as the actions stated do not mention any referral system. We concur with the ‘Service Users’ Views’ and recommend that there is one named point of access for service users. Furthermore, a system should be set up to enable access to service user assessments which consider all their individual needs. Finally, the information captured by this system should feed into support plans. ii) Our consultees would like reassurance that the delivery of services will be quality rather than cost led. Consequently, it is imperative that the ‘assurance systems’ include ‘the development of a “kitemarking” or quality standard system to ensure that services advertised through the catalogue meet the highest safeguarding standards’ (ibid). This is in line with the recommendation made by the National Audit Office that there is appropriate ‘quality control of individual services that people with autism may use’ (2009:9). As such, Autism West Midlands recommends that the wording of this section to removes the word ‘likely’, in the final bullet point in this section, and change the wording to the following: These quality assurance systems will include a ‘kite-marking’ or quality standard system to ensure that services advertised through the catalogue meet the highest safeguarding standards. We recommend, for services for individuals with more complex needs that services should be registered with the Care Quality Commission and Supported Living Services should demonstrate that they have met REACH Standards. Autism specific services should demonstrate that they are autism specific through accreditation or experience.
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This was confirmed in telephone correspondence with BCC’s Independent Travel Training Consultancy Service on 06.12.10.
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iii) This theme needs to acknowledge that autism is not a general learning disability: specific care strategies may need to be incorporated into support plans and the allocation of individual budgets. Therefore, we recommend that brokerage services and personal assistants proposed in the third bullet point of the ‘What We Will do’ receive occupational training in autism to a standard level (see best practice below). Further, that the community mapping service involves service users with autism.
Theme Six: Transitions i) Throughout the BJCSfLD the structure of each theme, broken down into ‘Service users’ views’, ‘How will this outcome be measured?’ and ‘What we will do’, means that it was not entirely clear to what extent service users’ views are being implemented in the ‘what we will do’ sections. It would be helpful for a more direct correspondence between the two sections; BJCSfLD should highlight where and why the service users’ views are not going to be translated into actions and outcomes. In Theme Six on transitions, for example, there is no assurance in the ‘what we will do section’ that an identified keyworker will be ‘assigned to the young person two years before s/he reaches adult services’. There also needs to be clarification about whether any action will be taken to develop ‘better links with Connexions services and special education centres’ as per the ‘Service User Views Section (BJCSfLD: 17). We recommend that this action is taken and would like the final draft of BJCSfLD to clarify how and whether these ‘better links’ will in fact happen in practice. ii) The ‘What we will do section’ 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. Further, the two posts overseeing transition into adulthood have been cut (see Autism West Midlands, 2009) in Birmingham, due to lack of funding, leaving Birmingham City Council without a transition lead and this authority without the capacity to continue vital transition work. So, as stated elsewhere in this response, we would like the final draft of BJCSfLD to include information about how these transition outcomes will be funded. Our organisation believes that steps should be taken to ensure continuity of this transition scheme rather than expending resources in replacing a project that is working well or failing to replace it at all. iii) Using the number of young people with Person Centred Plans for transition is a useful starting point in measuring the outcomes of transition in this section of the BJCSfLD but it does not guarantee quality (see point 6. Iii) below). Autism West Midlands believes quality should be at the heart of Person Centred Plans for individuals with learning disabilities, and those who are also on the autism spectrum. This is because such individuals are extremely vulnerable to missing out on employment (NAO, 2009) as a result of the hidden nature of their disability and likelihood of getting caught up in the criminal justice system (see Bradley, 2009). This means Person Centred Plans should truly be tailored to the individual who is under assessment and not be driven by the available funding. We recommend that the Department of Health You're Welcome quality criteria self-assessment toolkit (2009) is used to help develop a quality standard in transition practice. Our organisation also recommends that the ‘How will this outcome be measured?’ section includes information about who will be monitoring the implementation of this part of the strategy, in order to ensure quality standards are met and adhered to. iv)The issue of BJCSfLD’s failure to be effectively integrated into the national autism strategy (DoH, 2010a) and statutory guidance (DoH, 2010d) arises again in theme six. It says nothing about section 4 – Planning in relation to the provision of relevant services to young people with autism as they become adults - of the statutory guidance Implementing fulfilling and rewarding lives. Part of increasing the quality of PCPs and the level of successful outcomes is applying autism-specific strategies for those individuals on the spectrum who are going through transition (see Hendricks and Wehman 2009). In the absence of a specific autism service it is vital that individuals on the spectrum, who do not
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necessarily fit within the narrow definition of learning disability, are caught at this early stage otherwise they end up only being dealt with once they have reached crisis point and qualify for mental health service supports. Therefore transition should always start in the young person’s 14th year, school year 9, (see section 5 Disabled Persons (Services, Consultation and Representation) Act 1986; Scholl and Dancyger, 2005). Failure to do this can result in trauma for the service users, their parents and carers and often leads to service users being given inappropriate support. Early and comprehensive transition planning could also save BCC money. v) Our consultees felt that the underlying approach of the professionals who provide transition services should be to respond and deal with actions in a timely manner with honesty and due respect to the young person and their families/carers; working in partnership with these individuals to set realistic goals. Furthermore, professionals should signpost young people, their families and carers to all practical and reasonable options that are open to them in the particular circumstances of the case. vi) As discussed in the introduction to this document, Autism West Midlands believes that local authorities should produce pathway models to map the services available to individuals with learning disabilities, in line with the forthcoming NICE model care pathways (see DoH 2010d: 13). This is extremely important at the transition stage as publicising options available to young people with LD, in such a clear form, as it helps to improve their access to services, enable them to make informed decisions and therefore fulfil their potential. These transition pathways should also include timelines which will be adhered to by all professionals (Scholl and Dancyger, 2005). For an example of best practice in Transition Pathways (ibid) see available at: http://www.transitionpathway.co.uk/tranpath.html.
Theme Seven: Supporting Family Carers i) Autism West Midlands welcomes the empathy, towards family carers, and understanding of the importance of their role, expressed in the introduction to this theme. Our helpline service operators regularly experience the fear, held by elderly carers, about what support their loved ones will receive after they are gone. However, our consultees felt that the aims of this section of the strategy may not be implemented effectively because the language used and actions outlined are too vague. There needs to be definite statements of who will be carrying out these actions, how this will happen and by on what timescale. The following are specific points at which our consultees wanted the strategy to be more detailed. a) In the first point in the ‘What we will do’ section (BJCSfLD: 19), in what form will this information and advice be made available? How will carers be ‘efficiently sign-posted to the appropriate support’? Family carers are not a homogenous group of individuals; their needs will change as the person they care for ages, has varying levels of independence and, as the carer themselves, has changing levels of responsibility. Therefore, information produced for carers should be tailored to the specific care needs of the particular groups of carers, for example, information specifically for older part-time carers supporting people with autism or information adapted for a full-time carer supporting a child with learning disabilities. b) With regard to the second bullet point in the ‘What we will do’ section (BJCSfLD), who are the specific stakeholders with which the ICB will be working? We request an answer to this question to be included in the final draft of BJCSfLD. c) How does ICB define the ‘balance’ between caring responsibilities and life outside caring? We recommend that the BJCSfLD links in with the Department of Health Reaching out to carers innovation, this aims to ‘support carers to maintain a life of their own alongside their caring responsibilities’ by supporting them to consider their options about (2010e: 5): continuing with paid work;
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d)
the varied forms of support that may be available including benefits and replacement care; housing adaptations; assistive technologies; making other changes.
Autism West Midlands welcomes the aim in the BJCfLD to ‘identify families with older carers’ (2010:19). We recommended this in our consultation response to the autism statutory guidance’s objective of data gathering to help develop local commissioning plans around services for adults with autism (DoH, 2010d: 23). However, we would like clarification about how such identification will take place and, in order to improve coherence and utility in data collection, and recommend the results to be differentiated to show where the older family carers are supporting someone who has autism. Not only would this ensure that service users, being supported by older carers, get the best ‘care they need’ but it would improve integration with the autism statutory guidance. At the practical stage, where planning for the future is taking place with older family carers, and the service user with a learning disability is on the spectrum, our consultees felt it was vital that specialist autism support workers are involved.
ii) The necessity for individuals with Asperger Syndrome to be included in the BJCsfLD is extremely important in relation to supporting family carers. Often this group has not been picked up by the educational, health and social care systems at an earlier stage because family carers have mediated their need with their intensive support. However, such carers may reach a stage where they can nolonger cope or reach an age where their own health problems mean they are unable to give such intensive support. This can lead to crisis and the development of serious mental health problems for both the service user with Asperger Syndrome and their carers. This is another reason that makes it essential for individuals with Asperger Syndrome to be included in BJCSfLD.
Implementation and action planning In order to ensure that implementation and action planning are successfully carried out, Autism West Midlands recommends that: i) Autism specialists and service users with autism are involved at every stage of the strategy. ii) The forthcoming delivery plan, to follow BJCSfLD, contains a mixture of clear short term and long term goals. iii) All actions must be implemented to pre-determined quality standards and monitored.
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Table of Statutes Autism Act 2009 Equality Act 2010
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e/DH_081118 . Also available at National Library for Health http://www.library.nhs.uk/learningdisabilities/ Department of Health, (2009), ‘You're Welcome quality criteria self-assessment toolkit’, 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” 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. Department of Health, (2010e) ‘Reaching out to carers innovation fund 2010/2011’, Published to DH website, in electronic PDF format only: http://www.dh.gov.uk/publications FREDA, 2006, ‘autism spectrum disorders: training policy and framework’, published in Coventry: West Midlands Regional Partnership. Hendricks, D.R., and P. Wehman (2009), ‘Transition From School to Adulthood for Youth With Autism Spectrum Disorders Review and Recommendations’, Focus on Autism and Other Developmental Disabilities: June 2009 vol. 24 no. 2 77-88
Hatton, S., and A. Tector, (2010), ‘Sexuality and Relationship Education for young people with autistic spectrum disorder: curriculum change and staff support’, British Journal of Special Education: Vol 37 (2) Le Couteur, A., (2010), ‘Autism across the lifespan: where we are now & what does the future hold?’, Conference Paper given at the European Autism Action 2020 Conference held in Dublin 29.12.10 Scholl, C., and F. Dancyger (2005), ‘Transition Pathways: Guidance and Tools to Support Person Centred Transition Planning with Yound Disabled People Aged 13 to 25’, Produced by the Transition Pathway Project 2005, For more information contact transitionpathwaypartnership@yahoo,co.uk 18
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National Autistic Society, (2008), ‘I Exist’, London: The National Autistic Society. 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, Wing, L., (1981), ‘Language, Social, and Cognitive Impairments in Autism and Severe Mental Retardation’, Journal of Autism and Developmental Disorders Volume 11, Number 1, 31-44
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