Our response to Valuing People Now

March 2008

About us

The National Autistic Society (NAS) is the UK's leading charity for people affected by autism spectrum disorder (ASD). We were founded in 1962 by a group of parents who were passionate about ensuring a better future for their children. Today we have over 18,000 members, 80 branches and provide:

• Information, advice, advocacy, training and support for individuals and their families
• Information and training for health, education and other professionals working with people with autism and their families
• Specialist residential, supported living, outreach and day services for adults
• Specialist schools and education outreach services for children
• Out-of-school services for children and young people
• Employment training and support and social programmes for adults with autism.

A local charity with a national presence, we campaign and lobby for lasting positive change for those affected by autism in England, Wales, Scotland and Northern Ireland.

What is an autism spectrum disorder?

ASD is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with an ASD share three main areas of difficulty, their condition will affect them in different ways. The three main areas of difficulty are:

• Difficulty with social interaction. This includes recognising and understanding other peoples feelings and managing their own. Not understanding how to interact with other people can make it hard to form friendships.
• Difficulty with social communication. This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.
• Difficulty with social imagination. This includes the ability to understand and predict other peoples intentions and behaviour and to imagine situations outside of their own routine. This can be accompanied by a narrow repetitive range of activities.

Some people with autism are able to live relatively independent lives but others may need a lifetime of specialist support. People with autism may also experiences some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours. 

Asperger syndrome is a form of autism. 

We estimate that over 500,000 people in the UK have an autism spectrum disorder. 

General

There has been considerable confusion since the publication of the original Valuing People White Paper as to whether Valuing People applies to people with Asperger syndrome or high-functioning autism. The understanding we have had for the last few years, and continue to have, is that Valuing People applies to people with an ASD when they also have a learning disability (according to the definition of learning disability used in Valuing People), however, adults with Asperger syndrome or high functioning autism are not precluded from using learning disability services. 

We believe that more could be done to clarify with local authorities and others that people with an ASD who do not have an accompanying learning disability are not precluded from learning disability services as some people still face exclusion on the basis that they have Asperger syndrome or high-functioning autism.

According to the response to the Parliamentary Question below (November 2005), the definition of learning disability is not solely IQ based and some people with an ASD who have an IQ of 70 or above would come under the Valuing People definition of learning disability. This requires further clarification with local authorities, as many still determine learning disability based on IQ.

To ask the Secretary of State for Health whether an individual with an IQ of 70 or above meets the definition of learning disability used in Valuing People if they also have a significantly reduced ability to understand new or complex information and to learn new skills, and a reduced ability to cope independently, which started before adulthood and has a lasting effect on their development.
Paul Holmes

Considering intelligence quotient (IQ) alone is not sufficient to determine whether someone meets the definition of learning disability. An IQ slightly above 70, if associated with impaired social functioning may mean that services view someone as having a learning disability. However, an IQ substantially above 70, even if associated with impaired social functioning, would mean that someone would not be considered to have a learning disability. Valuing People covers adults with autism who also have learning disabilities. It is for local service providers to assess the individual's need, look at the balance between the determining factors and decide on the appropriate services to meet those needs.
Mr Byrne

We support the Valuing People agenda but believe that the Government needs to do much more for adults with autism from across the autism spectrum. The Department of Health should consider how elements of Valuing People could be applied to benefit people with Asperger syndrome and high functioning autism. It is also important that the focus on people with a learning disability does not divert attention away from those people on the autism spectrum who also require support but who do not have a learning disability.

Measuring success: while we support much of what this document aims to do, we are concerned that there are insufficient measures to monitor and evaluate success and believe that the 'we will know this because' boxes need to be much stronger and include specific targets and measures to monitor how progress will actually be achieved.

Part two: The big priorities

Personalisation

We support the focus on personalisation and believe that it is essential that person centred planning is available for all adults. We are very concerned by the findings in I Exist(1) that only 27% of people with an ASD have a person centred plan or care plan, and by research by Emerson et al(2)  looking into the experiences of person centred planning with people with a learning disability that revealed that people with autism are less likely to have a person centred plan. There needs to be specific action to ensure that all people with an ASD, including those with an accompanying learning disability, have person centred support.

The evaluation of individual budgets is supposed to specifically look at the experiences of adults with autism and we hope that this will provide some valuable knowledge about how individual budgets have impacted on adults with autism. Areas that we are particularly interested in knowing more about are considered below:

• We would like more information on whether the resource allocation systems that LAs have developed take into account the difficulties experienced by people with an ASD and how the Department of Health intends to ensure that in future all resource allocation systems (RASs) do this.  We are particularly concerned about this issue- if resource allocation systems fail to take sufficient account of the needs of people with an ASD - something which has often happened in past systems, then adults with an ASD will be at a significant disadvantage that could be very difficult to address, particularly if each local authority develops its own RAS.  We also believe it is vital that the resource allocation systems are able to differentiate between when higher cost support is required because of the need for specialist support.
• We are hoping that the evaluation will discuss situations where high funding packages are required and whether the systems produced were able to allow for this.
• We need to ensure that support brokers understand the need and issues people with an ASD face. There is also an issue about the independence (from local authorities) of brokers, as they will need to be able to negotiate robustly with local authorities.                      

Local authorities need to ensure that individual budgets are used to give choice and control to people and not to cut the costs of support.

What people do during the day

We welcome and support the move towards considering what people do during the day in a broader sense than focusing just on day service modernisation. However, there needs to be a realistic consideration of the alternatives available for people and ensuring we do not withdraw support and leave little in the way of accessible and affordable community activities  in its place. For some people, the modernisation of day services has resulted in their services being closed without alternative provision in place. We therefore support the intention that the starting point is effective person centred planning that finds out what people want. Many people with autism like structure and some people with an ASD would choose to have specialist support. It is important, therefore, that there is the infrastructure for people to be able to buy into- if that structure goes completely then it will reduce the choice available to people. From experience, any change needs to be carefully managed over time.  

There is little mention in Valuing People Now of the major barriers faced by people with a learning disability in accessing leisure opportunities in their local area. With 'local re-investment strategies [to] move from traditional day services to a social inclusion strategy' and a focus beyond 'nine to five working days [to] include evenings and weekend', there should be appropriate access and support for people to get involved in mainstream leisure activities.

Only 15% of all adults with an ASD are in full time employment and 66% are not working at all (including in voluntary employment)(3). Specific consideration needs to be given to assisting people with autism from across the autism spectrum find and stay in employment. We are concerned that insufficient attention will be given to the specific needs of people with an ASD and that the Department of Health should discuss with the Department of Work and Pensions what could be done to address the needs of adults with an ASD.

The recent DWP consultation on specialist disability programmes was worrying because of the potential impact on specialist providers. We believe that it is essential that specialist providers with expertise of working with particular groups are able to access sufficient funding to continue operating within the proposed new system. Paragraph 6.2.4 recognises the importance of specialist support as it says 'invest in specialist employment support agencies, but see jobcentre plus as the main resources to help people find work'. We are concerned that there is the potential for the knowledge of specialist employment support agencies to be lost without specific action by the DWP to ensure that this does not happen.

We believe that the actions in paragraph 6.2.9 would benefit people with an ASD and that adults with an ASD should be specifically considered within the initiatives, particularly plans to: provide advice and guidance to the employment sector on achieving inclusion in mainstream employment initiatives; to ensure that the skills of small providers of employment support are fully used when tendering for the delivery of work programmes; produce and share best practice guidance. At the least, ASD should have a specific focus within these initiatives, however, it would be preferable if equivalent documents/initiatives were undertaken to cover all people on the autism spectrum.

Paragraph 6.4: the new PSA is very welcome, however, it should be able to monitor progress towards helping people find work, as well a simply the number of people in employment. Without this, there is a real potential of 'cherry-picking' those closest to the labour market.

Better health

The I Exist report revealed that much more could be done to improve the health of all people on the autism spectrum. 63% of adults with an ASD do not receive enough support to meet their needs and over 60% of people with an ASD who feel that they do not have enough support to meet their needs believe that with more support their general health would improve.  There has not been sufficient consideration to the general health requirements of people with an ASD.  The introduction of information prescriptions introduced in the White Paper Our health, our care, our say need to be specifically available to people from across the autism spectrum.

There is also a particular issue about the health needs of older people with an ASD. There is a real absence of information on this issue and a real need to address it- particularly in relation to how anxiety levels and drugs will affect people.

Access to appropriate diagnosis and treatment is also a significant issue and we remain concerned about the low level of recognition of ASD, particularly Asperger syndrome, among mental health and other professionals. Misdiagnosis and inappropriate treatment, particularly drugs, is commonly reported and training of mental health professionals, especially adult psychiatrists in the recognition, diagnosis and treatment approaches remains a high priority.  

We support the action by the Chief Executive of the NHS of writing to SHAs and PCTs stressing that they must have sufficient commissioning capacity and expertise in learning disabilities. It is vital that this is equally the case for people with an ASD and a learning disability and for all other people on the autism spectrum. 

Paragraph 7.2.8: the disability equality schemes of PCTs and general hospital trusts should also address their abilities and resources to provide general healthcare to people with an ASD, and they should be encouraged to do so.

The reference to the need for sufficient staff with the necessary skills and training should apply equally in respect of ASD.

Paragraph 7.2.11 we support the reference to the social exclusion PSA in the forthcoming NHS operating framework and hope that the needs of people with an ASD will also be considered within the framework.

Paragraph 7.4: it is important that PCT commissioning plans specifically consider the needs of adults with autism and a learning disability. The commissioning plans should also consider the needs of people from across the autism spectrum and it is important that guidance to PCTs emphasises this.

Improving people's housing situation

A lack of resources and available housing prevents individuals with an ASD living more independently in a setting suitable to their needs. Over 40% of adults with an ASD live with their parents and of those people who do live in their own flat or house, 44% say that their family provides much of their support. Only 14% of adults with an ASD live in their own flat or house with support(4), but 37% would like to live in their own flat or house with support . Tomorrow's big problem: housing options for people with autism(5) estimated that a further 8,500 housing places are needed nationally to meet the needs of people with an ASD who have an accompanying learning disability and that the number for those with Asperger syndrome would exceed twice this figure.

To achieve independence for adults from across the autism spectrum, much more needs to be done to address the housing issue, we therefore support the intention that, 'within the overall policy of a range of housing options being available, local authorities should concentrate on promoting access to and increasing the number of people who live in their own homes or have assured tenancies in rented accommodation'. This should apply equally to people with an ASD who do not have a learning disability - it is important that the focus on people with a learning disability does not divert attention from those people on the autism spectrum who also require support but do not have a learning disability. 

Paragraph 8.2.4: the proposal to develop advice to local authorities on identifying the housing needs of people with learning disabilities is a welcome suggestion. It should specifically consider the needs of people with an ASD. This should include design issues. It is now widely accepted that 'some behaviour patterns, compulsions or aversions may be moderated or exacerbated by the design of a house'(6). The sensory sensitivity some people with an ASD experience means that situations other people would find tolerable can become unbearable. Local authorities should understand more about the ways in which design can create an autism friendly environment. 

A wider issue that often acts as a barrier to people achieving greater independence is the problem experienced as a result of the ordinary residence issue. We believe that the lack of clarity about who should provide funding when someone is placed out of their area and then there are attempts to move them towards supported living can be a major barrier to increased independence. This is particularly as issue in the case of older and/or perhaps more complex people as they have been placed out of county (in many cases some years previously) because they have not been able to find anywhere in their locality suitable. Their host authority is reluctant to take on the financial burden of supporting the person in a more independent setting and the result is that it stops many people moving out of residential care at all. Disputes can often take a long time to resolve, if at all. Ordinary residence rules need amendment and new guidance.

Case study

A man with an ASD was living in a six bedded registered home. The staff there felt that his independent living skills had improved to such an extent that he wanted to live in his own home, rented from a housing association, with support from the care provider. His care home fees were being paid for by the authority from which he had lived originally, a London borough. The care manager approved of this move but advised the person and provider that they would not take responsibility for providing his support for more than 12 months as they deemed that he had made himself "ordinarily resident"  within the new local authority. The local authority that he had lived in for a substantial time in a residential care home also stated that they would not accept responsibility for paying the support of this man. He decided to move house anyway and the host local authority are still paying but there is the threat that the host authority may stop funding his care.

Part three: the wider agenda

Advocacy and rights

We believe that access to advocacy is essential and support the focus on investing in advocacy at a local level. Advocates need to have an understanding of ASD and be able to work with people with ASD. 

Partnership with families

92% of parents are either very worried or quite worried about their sons or daughters future when they are no longer able to support them(7). They often lack confidence in a system they see as unstable due to constant change and upheaval. 

Every waking hour you worry about the future of your child. Who will put up with their temper trantrums? Who will shower and wash them? Especially who will love them as you do? I just dont know what lies ahead for my son.
Parent of a person with an ASD

It gives me great concern and stress to think of what will happen to my son when my husband and I are no longer here. As awful as it is, I seriously hope I outlive him- this gives me great sadness and depression. I have no faith that authorities will support him to live a functioning life.
Parent of a person with an ASD

Many adults with an ASD rely on their families for support. Parents and cares of adults with autism who live at home are rarely given any support to help them in their role as carers - 76% of them are not currently receiving any support from their local authority and 68% have not even received a carers assessment (8).

My son doesn't eat unless prompted to do so. He wont wash or attend to his own personal hygiene without a fight. He is verbally and physically aggressive, as well as beig noise and light sensitive.  Having a normal conversation with him is impossible. He has been totally agoraphobic since 2005 and is mentally and physically exhausting to care for. He sleeps badly or not at all. I often feel suicidal due to sleep deprivation.
Parent of a person with an ASD

Keeping [her] clean, cooking food for her, doing all her paperwork, opening her letters, doing her washing and ironing, keeping her company because shes very lonely, trying to cheer her up, trying to motivate her. Somewhere in between is ME, hanging on by my fingertips.
Parent of a person with an ASD

The work currently underway in relation to carers needs to explicitly consider the situation of carers of people with an ASD. Many of the actions under this vision on this section will be measured by listening to the views of families and carers. It is vital that family carers of people with an ASD are included in this consultation work.

Including everyone

We welcome the consideration of ASD in this section. However, as stated above, we believe that the Government needs to do much more for adults with an ASD from across the autism spectrum and the Department of Health should consider in much greater detail than has occurred so far, how elements of Valuing People could benefit people with Asperger syndrome and high-functioning autism.

We support the publication of the clarification note but it is not sufficient by itself to address the difficulties faced by adults with an ASD - it has no statutory force and it does not present a complete and coherent strategy for supporting adults with an ASD. Much more is needed if adults from across the autism spectrum are to receive the support they need.

We welcome the statement in paragraph 11.2.7 that 'people with autistic spectrum disorders need support that responds to their individual and specific needs, from staff who have understanding and experience in developing and providing services for people with ASD' and that personalised approaches should be used to commission and provide services. Furthermore, it is vital that the current autism specialist post is extended and made into a full time, permanent position, as a starting point to addressing the difficulties experienced by adults with an ASD.

In the section that sets out the vision for the next three years, we strongly support the statement that there should be 'local clarity about responsibility for services and support to people on the autistic spectrum so people are not falling between services'. This seems to apply to all people on the autism spectrum- which we strongly welcome and which we believe is worth emphasising. The struggle to access support as a result of falling into the gap between learning disability and mental health teams and/or services is unfortunately a very common difficulty faced by people with an ASD and addressing this would be a significant step in tackling the constraints in the system that act as a barrier to adults with an ASD receiving support. However, there is no discussion as to how this will be achieved and we suggest that specific action to achieve this measure is set out. We would welcome an opportunity to work with you to discuss what this could be and to provide examples of good practice.

People as local citizens

56% of people with an ASD have been bullied or harassed as adults and over 70% of adults with an ASD who live on their own have been bullied or harassed(9). Addressing the hate crime faced by adults with an ASD is essential and we support initiatives that would do this.

Transport

Paragraph 12.2.3 recognises that action to make public transport accessible has largely focused on physical access. The sensory sensitivity experienced by adults with an ASD tends not to be considered and we believe that in addition to what is discussed in this section, there needs to be further work to address this point.

Relationships

This issue is particularly relevant to adults with an ASD. 75% of adults with an ASD do not have any friends or find it hard or very hard to make friends and 72% of adults with an ASD would like to spend more time in the company of other people(10).

The types of supports that adults with an ASD most want are those that would help them to improve their relationships. This also applies when specifically considering people with an ASD and a learning disability- parents and carers of this particular group say that the top four supports that their son or daughter would benefit from are: social skills (68%), social groups (58%), daily living support (52%) and befriending (47%) (11). We believe that social support has the potential to make an enormous difference to the lives of adults with an ASD - yet the gap between the number of people receiving these types of support compared to those who would like to receive them is greater than any other type of support.

Making the transition to adulthood a positive experience

The transition from school to adulthood can be a particularly difficult time for young people with an ASD, it is essential, therefore, that early support and effective transition planning is in place. Only around half (53%) of young people with an ASD who have statements were issued with transition plans during the course of their education, falling to just one third of students in mainstream schools. Of those who did experience transition planning, 45% were dissatisfied with the process (12).

We strongly welcome the additional £19 million that has been made available for transition. It is vital that ASD is taken into account in this work.

Improving the workforce

It is vital that social workers, other social care staff and other professionals who could come into contact with people with an ASD have a greater understanding of the condition than at present. The majority of local authorities believe that support workers need more training in ASD; 63% say that support workers have insufficient training in their initial professional training while 56% say that support workers have insufficient training in ASD in their ongoing professional development. Local authorities also do not believe that care managers receive sufficient training in ASD in their initial professional training (71%) and in their ongoing professional training (67%). Over three quarters of local authorities do not have an ASD training strategy at all.

We have had useful discussions with Skills for Care and they have agreed to produce an ASD knowledge set, which is an extremely welcome development. We believe that further work is needed though to address the lack of knowledge of ASD among professionals - working with individuals with an ASD requires at the very least an understanding of the complex cognitive, behavioural and sensory profiles of such individuals and an ongoing training programme that builds skills and capacity.

The initiatives suggested for learning disability in this chapter should be applied in respect of ASD as well. 

Part four: the major priority- making it happen

Providing the right national and local leadership and support

We support the specific focus in this document on making change happen.  It is vital, if the strategy is to be successful, that support is in place to enable the changes suggested in this document to be taken forward  and we share the concern of the Joint Committee on Human Rights that '...in Valuing People Now there appear to be few measurable targets for action nor precise proposals for monitoring progress on their achievement'(13) . 

It is important to emphasise to partnership boards that a priority action in the social exclusion PSA mentioned that 'It will also be important for LDPBs and social care services to consider the wider and more complex needs of those with autism and Asperger syndrome.'

Better commissioning

There is concern that specialist service providers are being pressurised to reduce fees by some local authorities who do not recognise the nature of ASD and its impact on cost structures for the provision of care. We have heard of 'pricing tools' developed for mainstream learning disability services being inappropriately applied to autism services in an attempt to drive down costs. This clearly puts such services at risk and will quickly damage the capacity of specialist services to meet complex needs.

As money is transferred from PCT learning disability budgets and the associated commissioning responsibility to local authorities, there should be safeguards to ensure that this funding is spent on learning disability services.

We support the intention in 16.3.4 to develop a better understanding of the increasing demands on learning disability services to inform future spending decisions. There is very little data in relation to adults with an ASD and it is essential that knowledge of this group is also increased in time for future spending reviews.

There has never been a prevalence study into the number of adults with autism in the UK and we would urge the Department of Health to provide funding for a study. A report undertaken for the Social Exclusion Task Force highlighted the lack of information about the number of adults with an ASD and emphasised the impact this has upon policy and service design: 'we have insufficient epidemiological information reliably to estimate the prevalence of neuro-developmental disorders in the UK population. This is a major gap in the evidence needed to estimate the prevalence of chronic exclusion and the most effective responses to the needs of the people affected'(14).
       
We agree with the statement in 16.3.5 that recognises the importance of having accurate information on numbers of people- including future changes and broad data on need, for example through an effective and accurate multi agency register. This would be of equal value not only to those people with an ASD who have an accompanying learning disability but to all people with an ASD. We know that at present the majority of local authorities do not know how many adults with an ASD there are in their area. 67% of local authorities do not keep a record of how many adults with an ASD there are in their area and those that do frequently fail to include people from across the autism spectrum- only 19% of local authorities say that they have a record that includes people with Asperger syndrome or high functioning autism.

We struggle to identify adults with ASD from our recording system. Therefore it makes it difficult to track actual spend. Local authority                                                                          

For practically all local authorities, a true picture of the number of adults with an ASD in their area does not exist. Therefore, a multi-agency register would be a very useful tool towards addressing this situation. 

Getting better at checking how we are doing

We are concerned by the lack of levers relating to ASD on local services.  We believe much more work is needed to address this and that the review of the performance framework to improve monitoring of learning disability services should be extended to cover all people on the autism spectrum. There should also be a specific focus in the work already planned on people who have an ASD and an accompanying learning disability. 

The reference in paragraph 17.2.9 to establishing a learning disabilities observatory would be a positive development. There should also, however, be an ASD observatory that receives, analyses and reports on data about the lives of people with an ASD.

Paragraph 17.3.2 refers to the need for JSNAs to include accurate information about the lives of people with a learning disability. We believe that JSNAs should also include information on all people with an ASD and that local services should be encouraged to ensure that this happens. Early guidance from the government did not address this point and further guidance should be clear about the need to include adults with an ASD in JSNAs.

References

1. Rosenblatt, M (2008): I Exist: The message from adults with autism in England, The National Autistic Society.
2. Emerson et al: The Impact of Person Centred Planning, Institute for health Research, Foundation for people with Learning Difficulties; Centre for Economics of Mental Health, Helen Sanderson Associates, DoH, Quest, Estia Centre
3. Rosenblatt, M (2008): I Exist: The message from adults with autism in England, The National Autistic Society.
4. Rosenblatt, M (2008): I Exist: The message from adults with autism in England, The National Autistic Society.
5. Harker, M., King, N, (2004) Tomorow's big problem: housing options for people with autism: a guide for commissioners, providers and families, NAS
6. Robertson, J and Emerson, E (2006). A systematic review of the comparative benefits and cost models of providing residential and vocational supports to adults with autistic spectrum disorder. Lancaster University: the Institute for Health Research
7. Rosenblatt, M (2008): I Exist: The message from adults with autism in England, The National Autistic Society.
8. Ibid
9. Ibid
10. Ibid
11. Ibid
12. Reid, B (2007) Moving on up?: Negotiating the transition to adulthood for young people with autism, The National Autistic Society
13. Joint Committee on Human Rights (February 2008) Conclusion 2, 'A life like any other? Human Rights of Adults with Learning Disabilities'
14. Schneider, J (2007) Better outcomes for the most excluded. Nottingham: The Institute of Mental Health, The University of Nottingham and Nottinghamshire Healthcare Trust.