Autism Act 2009

Earl Howe Excerpts

Monday 26th March 2012 Grand Committee

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I thank my noble friend for tabling this Question and pay tribute to the way in which she has championed the cause of those with autism in its various forms over many years. This debate has done full justice to the key issues facing us at the moment. It has also generated a great many questions and I shall do my best to answer as many as I can but I shall inevitably need to write to noble Lords on some of them.

The Autism Act was a landmark piece of legislation. As my noble friend said, it was the first ever disability-specific law. It led to the development of the adult autism strategy and statutory guidance for local authorities and the NHS. The strategy made it clear that to be a success, it would require long-term cultural change. We need to remember that this is not going to be an overnight process. It also requires action right across the public sector.

Since then, we have had some real successes; for example, the North East Autism Consortium regularly brings together local authority and NHS lead commissioners for autism to share their experiences and to drive forward their priorities, all the while involving people with autism in the process. Personal budgets have begun to make a real difference to people’s lives. They have a degree of flexibility that enables people to be creative about how they spend their money. People can make every penny count and get real value for money.

A central tenet of the autism strategy is that adults with autism should be able to access the same services as everyone else. If someone with autism is being assessed for social care, their autism should be taken into account, regardless of their IQ, and I will turn to that point again in a moment. If they are looking for work, Jobcentre Plus should find suitable positions that are sensitive to their needs. To reap the full potential of the Act, local authorities and the local NHS need to work together and co-operate on planning and training, on the identification, diagnosis and assessment of autism, and on the transition from childhood to adulthood. I will come on to some of those themes in a moment.

While the lead must come from local communities, more still can be done to help at the national level. We recently announced a new children and young people’s health outcomes strategy, which is aimed specifically at developing the life chances of young people. To support this, we have established a children and young people’s forum, under the leadership of Christine Lenehan, chief executive of the Council for Disabled Children and Ian Lewis, medical director at the Alder Hey Children’s NHS Foundation Trust. Last April, we published new tools for local authorities and NHS bodies to support communities with the implementation and monitoring of the strategy and the statutory guidance.

The learning disability public health observatory has been finding out from local authorities just how they are delivering the strategy. The results will be published at the end of the month, enabling people to lobby locally and to challenge where necessary. So far, about nine out of 10 areas say that they have a commissioning plan for services for adults with autism either in place or in development. More than half the local authorities in England have established autism partnership boards to ensure that the views and wishes of people with autism and their carers inform the design, development and commissioning of services at a local level.

While central government can set the framework and work to remove barriers and increase awareness, the real work—the delivery of lasting change—is for professionals, providers, voluntary organisations, service users and carers working together in collaboration. The autism strategy has never advocated a top-down process. It is not about setting targets and milestones. It has always been about empowering local communities to come together and to get things done. It is also about integrating care across the NHS, social care and other local authority services, and putting people with autism at the centre of any plans to improve their own lives and, as much as possible, to put them in control. The new health and well-being boards will be crucial to integration. They will bring together all those with an interest in local health and social care. They will draw up the local needs assessment. Crucially, they will also write the local strategy to meet those needs and be responsible for fulfilling it.

A huge amount of work has taken place over the past couple of years. Consistent pathways for diagnosis are being delivered through the NICE clinical guidance for the diagnosis and management of autism. Newly diagnosed patients are being given appropriate advice and information. Lead professionals have been appointed in most local areas to develop diagnostic services. We now have NICE guidelines covering the diagnosis, referral and management of autism among children and young people. Similar guidelines for adults are out for consultation and are due this summer. The proposed adult autism quality standard has now been referred to NICE and an announcement on further referrals following this engagement exercise will be made shortly.

The noble Lord, Lord Collins, paid tribute to the work of the voluntary sector and, in particular, the National Autistic Society, and I would like to echo what he said. The society is now in its 50th year, and there is no doubt that its lobbying, research, advice, support and services do a huge amount to set the standard for autism services and to drive system reform. I would like to thank it and many other organisations that work to improve the lives of people with autism. Alongside them, we have to thank the parents, carers, teachers and friends of those with autism.

My noble friend Lady Browning asked me specifically about the question of someone’s IQ. The strategy and guidance make it clear that people with autism or Asperger’s syndrome can no longer be refused an assessment or access to support because their IQ is too high and they do not have a learning disability. She is aware of that.

We expect more low-level and preventive services to be developed in response to the autism strategy and statutory guidance as commissioning plans are developed locally and a better understanding of local needs is developed. Given the right support, many more people with autism, particularly those with high-functioning autism or Asperger’s syndrome, will be able to live more independently in the community. Some areas, such as Liverpool and Bristol, have developed multidisciplinary teams that help with diagnosis and post-diagnosis support and their expertise can greatly increase awareness of autism among other services. The NICE guidelines, which will be published this year, will look at the use of these teams in more detail.

A number of noble Lords, including my noble friend, the right reverend Prelate, and the noble Lords, Lord Addington and Lord Collins, spoke about the need to raise awareness and expertise at a local level among front-line professionals. The Department of Health has funded a series of online training resources and booklets to increase awareness and understanding of autism across all public services, costing half a million pounds in total. Working with the Royal Colleges of Nursing, GPs and Psychiatrists, the Social Care Institute for Excellence, the British Psychological Society, Skills for Health and Skills for Care, the NAS and others, a range of quality materials to enable front-line staff to better recognise and respond more effectively to the needs of adults with autism have been produced. We are planning further work with our partner organisations to ensure dissemination and uptake of this material. It is, however, important to emphasise that it is for local health and social care organisations to ensure that professionals involved in providing services have the necessary qualifications, expertise and training for the purposes that are required.

My noble friend referred to local governance structures. Those structures are in place, including the partnership boards. Local JSNAs and autism self-assessments should also provide information for local service users and representative groups to benchmark provision within their localities and identify where there are gaps. A key issue is to explore whether local health and care commissioners and providers are taking forward services in line with Implementing Fulfilling and Rewarding Lives, the statutory guidance which was published in December 2010, and to challenge locally where that is not happening.

The right reverend Prelate referred to self-assessment. He is right that we have asked the learning disabilities public health observatory to collect and collate data from the reports that are coming out of self-assessment. Those will be online by the end of this month. I am confident that this is a step in the right direction. Almost 90 per cent of local authorities have submitted a report, which is encouraging.

Clinical commissioning groups were referred to by the noble Lords, Lord Collins and Lord Touhig, among others. The NHS Commissioning Board will be issuing guidance to the CCGs. That may be for a variety of purposes, including to support improvement of outcomes in the NHS outcomes framework, within which are indicators on long-term conditions and mental illness. However, I am careful not to refer to autism as a mental illness. Health and well-being boards and CCGs will be expected to ensure that they comply with all relevant legislation included in the Autism Act.

I am receiving signals that my time is almost up. I apologise to noble Lords as I have a great deal more material here that I would gladly have used. I just highlight two essential priorities for us. We need to benchmark the services and outcomes for people with autism. We have made a start with this through the self-assessment tool. We need better information to plan and commission services, robust local prevalence data on autism and up-to-date joint strategic needs assessments so that services can be commissioned appropriately. By being clear and transparent at every stage we can hold local authorities, the local NHS and others to account for the quality of the services that they are delivering. As we devolve power down, place far more focus on local leadership and personal control and work to drive up outcomes, it will not be only the statistics that start to look better but also the lives of people with autism.