Care Bill [Lords]

Written evidence submitted by the National Autistic Society’s (CB 19)

Introduction

1.1 The National Autistic Society (NAS) is the UK’s leading charity for people affected by autism. We have around 20,000 members and 100 branches, who are at the heart of what we do. We provide a wide range of advice, information, support and specialist services to 100,000 people each year. A local charity with a national presence, we campaign for lasting positive change for people affected by autism, and empower local people to influence change they will experience at a local level.

1.2 Autism is a lifelong developmental disability that affects how 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 autism share certain difficulties, their condition will affect them in different ways. 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 experience over- or under-sensitivity to sounds, touch, tastes, smells, lights or colours. More than 1 in 100 people in the UK has autism [1] .

1.3 Too many adults with autism are still waiting for the everyday support they need. In a recent survey by the NAS, 70% of adults with autism and their carers who responded said they are not receiving the help they need from social services [2]

1.4 Local authorities frequently do not identify adults with autism living in their area and do not plan and commission services that meet their needs.

1.5 Local authorities tend to provide services via specific teams which are categorised into client groups. Consequently, people with autism will usually come into contact with the learning disability team and/or the mental health team. However, as autism is a developmental disability and not a learning disability or a mental health problem, many people with autism, and particularly those with Asperger Syndrome or high-functioning autism find themselves "falling through the gap" between learning disability teams and mental health services, as both refuse to take responsibility for them. Too often, people with autism find they don’t "fit" into existing structures and fail to access the help they need as a result.

1.6 Where one of these teams has ‘taken responsibility’ for an individual with autism, the team’s lack of understanding of the condition often means that the support available is not tailored to their specific needs.

1.7 The Autism Act 2009, which became law as a result of cross party consensus, was developed to address some of these challenges. It is starting to make some difference, but our research through our Push for Action campaign shows that there is still a long way to go to ensure that adults with autism can get the help they need.

1.8 The Care Bill is central to making sure that the Autism Act delivers for adults with autism. The NAS has particular concerns about four areas of the Bill in relation to the Act and more widely in ensuring that adults with autism can access the support they need:

· Ensuring that duties included in the statutory guidance that was issued as a result of the Autism Act will continue to apply to local authorities and NHS bodies

· Improving access to trained community care assessors

· Securing sufficient sustainable funding for social care and setting the right level of eligibility

· Ensuring accountability around preventative services

1.9 The National Autistic Society is a key member of the Care and Support Alliance and support their briefings and amendments on the Bill.

The Autism Act

2.1 The Autism Act 2009 is England’s only disability-specific legislation. The Act led to the publication of the adult autism strategy for England and crucially statutory guidance which sets out duties on local authorities and the NHS to improve the lives of adults with autism across England. As a result of the Care Bill, all current regulations and statutory guidance relating to social care will be re-issued and brought together in one place. For the most part these regulations and guidance will only apply to local authorities. However, the Autism Act statutory guidance applies to both local authorities and the NHS.

2.2 The NAS is keen to ensure that the way that the new regulations and guidance are issued following the passing of the Care Bill ensures that the Autism Act statutory guidance continues to apply to the NHS as well as to local authorities to ensure the ongoing implementation of the Act.

2.3 For instance, the statutory guidance gives Clinical Commissioning Groups responsibility for developing a diagnostic and care pathway for adults with autism. Diagnosis is the crucial first step for someone with autism towards understanding their condition and getting the support they need. However, the NAS’s research, as part of their Push for Action campaign, found that there is a pathway in place in only 63 out of 152 local authorities [3] , showing the need for a continuing duty.

2.4 The statutory guidance also states that NHS bodies and NHS Foundation Trusts should ensure autism awareness training is available to all staff working in health care. As a minimum, autism awareness training should be included within general equality and diversity training programmes. The guidance also states that more specialist autism training for certain staff is expected and for GPs in particular. The reference to GPs was included following a survey by the National Audit Office in 2009 which found that 80% of GPs felt they needed more understanding and awareness of autism and where to refer people with autism on to for help and support [4] .

2.5 We would like assurance that the statutory guidance issued under the Autism Act will continue to apply to the NHS, when it is re-issued this year

Assessment

3.1 We welcome the Government’s recent amendment to the Care Bill to enable the development of regulations that specify where community care assessments should be carried out by assessors with specific expertise. These regulations should look at the specific needs of adults with autism, in line with the Autism Act statutory guidance.

3.2 Community care assessors can easily misunderstand the needs of someone on the spectrum if they do not have experience and knowledge of how to communicate with someone with autism or of the impact of the condition on someone’s day to day life. People with autism have three main areas of difficulty: social interaction, social communication and social imagination. Assessors often fail to adapt assessments to reduce the impact of these difficulties.

3.3 Social interaction difficulties can make it hard for a person with autism to explain what support they want, or need. The person may not wish to engage with or understand how to take part in an assessment. Non-specialist assessors can mistake this for failure to consent to an assessment.

3.4 Social communication difficulties include a lack of spoken language for some, problems understanding the ‘gist’ of what people are saying, and thinking people always mean exactly what they say. People with autism can therefore misunderstand or misinterpret what has been said to them. They may find it difficult to express, or accurately represent, their own needs during assessment. A person may also struggle to understand questions and intentions, unless they are made absolutely clear and unambiguous. For example, if a person with autism is asked, "are you able to wash yourself on your own", they may reply "yes", but omit to mention that this is with verbal prompting at every stage.

3.5 Social imagination difficulties include problems with predicting what will or could happen next. It is hard for people with autism to understand their own needs or imagine what alternatives there may be to their current situation. They may not have the insight to realise what information is required during an assessment. People can also become uncomfortable talking about support that involves changes to an established routine or a move to a different service.

3.6 People with autism are often assessed by non-specialists or are offered a "specialist assessment", but with a learning disability team. Assessors, particularly those used to assessing those with a learning disability may mistake an adult with high-functioning autism, who may be well educated and articulate, as therefore able to look after themselves with minimum input and support, when this may not be the case. Alternatively, someone with both autism and a learning disability may not have their autism taken into account and is therefore provided with inappropriate and maybe even damaging, services as the following quote from a parent demonstrates:

"My son has been placed twice now in accommodation unsuitable for his needs with disastrous results. We are now picking up the pieces and we have him at home. We have been told by social services that they have nothing for him"

3.7 For an assessor to comprehensively and fairly assess someone with autism, they will need to have knowledge and expertise in adapted communication, devising different ways for people to express themselves and having the patience and understanding to support people with challenging behaviour. They will also need to have a clear understanding of the types of difficulty that someone with autism is likely to experience and the impact that this has on day to day life.

3.6 In the statutory guidance that was published as a result of the Autism Act, the Department of Health provided clear direction that autism training is essential for community care assessors, to ensure the needs of adults with the disability are fairly assessed. It states that ‘local areas should develop or provide specialist training for those in key roles that have a direct impact on access to services for adults with autism – such as GPs or community care assessors’, so that ‘within each area, there are some staff who have clear expertise in autism’ [5] . However, National Autistic Society research found that only just over half of English local authorities had specialist training available for their staff. Crucially, only one in three adults with autism told the NAS that, in their experience, social workers have a good understanding of autism [6] .

3.7 We would like assurance that the regulations on assessment will specify autism as a key group of people who will need specialist assessments, in line with the Autism Act statutory guidance. We are keen to work closely with the Department of Health on the development of these regulations.

3.8 Regulations on assessment will also need to be clear that social and communication needs are given equal weight to physical needs, to ensure the clear identification of the specific needs of adults on the spectrum.

Eligibility and Funding

4.1 As a result of insufficient funding, a significant number of adults with autism are not eligible for support under the current system, leaving their needs unmet. A sustainable solution for future funding is therefore vital to ensuring that adults with autism can access the support they need to play active parts of the community and prevent them from needing crisis care.

4.2 Along with our colleagues in the Care and Support Alliance, we believe that the new eligibility threshold should be equivalent to "moderate needs" under the current system. This is essential if the Government is to succeed in its stated aim to prevent or delay care needs from developing, rather than only intervening at crisis point. This will actually save Government money in the long run

4.3 The NAS, along with Scope, Mencap, Leonard Cheshire Disability and Sense have produced a joint report supported by economic modelling by Deloitte which shows the cost savings that can be made by investing in support for people with 'moderate' needs.

4.4 The ‘Ending the Other Care Crisis’ [7] report, has shown that due to preventing escalating needs, for every £1 invested in supporting a working aged disabled adult with moderate level needs this generates returns of £1.30 for people, carers, central and local Government.

4.5 We urge the Minister to consider the economic modelling produced by Deloitte, which demonstrates the savings that can be made by setting eligibility at the equivalent of moderate

Preventative services

5.1 The National Autistic Society welcomes the emphasis on the principle of prevention in the Bill but believes that in order for it to have a real impact on the provision of services, it must be further entrenched and ensure there is clear accountability for local authorities to deliver their duty of prevention.

5.2 Social care must no longer be a service of last resort. Under the current system, too many people only become eligible for support when their needs become acute and they require intensive, high level care and crisis management.

5.3 Many adults with autism would benefit greatly from low level services such as befriending or social skills training. These would help them to avoid isolation and participate in society. Lack of access to these services can have a devastating impact. A third of adults with autism responding to an NAS survey said they had developed severe mental health problems as a result of lack of support. [8]

5.6 Moreover, evidence from the National Audit Office (NAO) shows that providing low-level services is cost effective and prevents people from developing more complex problems. [9] The report stated "Beside the negative impact of such crises on a person’s life, acute services are also expensive, with inpatient mental health care costing between £200 and £300 per day" [10]

5.7 The NICE guideline on autism in adults highlighted that investing in supported employment for adults with autism is cost-effective. [11] According to NICE: "positive effects for supported employment programmes appear to stretch beyond the direct impacts on employment, with additional improvements observed for autistic behaviours, quality of life, and executive function." [12]

5.8 Enshrining prevention in the Bill is also important where older people with autism are concerned. Many middle aged or older people reach a "crisis point" when their parents or carers pass away. Appropriate identification, awareness and assessment of needs before this point is reached are vital.

5.9 Recent research by the NAS showed that 66% of respondents over 55 have not had their needs assessed since they were 18. Significantly fewer older respondents had had their needs assessed in the past two years, compared to younger respondents. [13]

5.10 Given the importance of low level, preventative services, we would like to know how the new legislation will ensure that local authorities can be held to account for delivering their duties of prevention.

Conclusion

6.1 On the whole The National Autistic Society welcomes the framework that the Bill sets out for social care.

6.2 However, we have significant concerns that too few adults with autism will be able to benefit from the reforms, as currently drafted.

6.2 To make sure the reforms are fair for this group:

· National eligibility should be set at the equivalent of moderate;

· More attention needs to be paid to ensuring that preventative services are developed; and

· The Government needs to ensure that the intentions of the Autism Act 2009 are integrated into the reforms.

January 2014


[1] Baird G, et al. (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215; The NHS Information Centre, Community and Mental Health Team, Brugha, T. et al. (2012) Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey. Leeds: NHS Information Centre for Health and Social Care.

[2] Ozmen, A (2013) Push For Action London: NAS

[3] Ibid

[4] National Audit Office (2009), Supporting people with autism through adulthood . London: The Stationery Office

[5] Department of Health (2010), Implementing Fulfilling and Rewarding Lives. p11

[6] Ibid

[7] Aiden, H. and Bush, M. (2013) Ending the other care crisis: Making the case for investment in preventative care and support for disabled adults London: Deloitte

[8] Rosenblatt, M. (2008). I Exist: the message from adults with autism in England . London: The National Autistic Society

[9] National Audit Office (2009). Supporting people with autism through adulthood . London: The Stationery Office

[10] I bid

[11] National Institute for Health and Clinical Excellence (2012). Autism in adults: full guideline

[12] http://www.nice.org.uk/nicemedia/live/12339/58812/58812.pdf

[13] Bancroft et al (2012). The Way We Are: Autism in 2012 . London: The National Autistic Society

Prepared 17th January 2014