Queen’s Speech

Lord Touhig Excerpts

Tuesday 14th May 2013 Lords Chamber

[Lord Touhig]

My Lords, I wish to confine my remarks to social care support, particularly for people with autism. A commission on autism and ageing on which I served, and which was chaired by the noble Baroness, Lady Greengross, was told that most people with autism in this country are adults and that most are undiagnosed. Autism was identified in the 1940s and the first generation to be diagnosed is therefore now moving into old age. As a consequence, very little is known about the impact of autism on ageing, and vice versa, but we know that autism is not rare. It is estimated that 1% of the population have an autism spectrum disorder, while some 70% of those diagnosed are not receiving the help that they need from social services.

Far too many adults with autism are still waiting for the everyday support that they need, so the purpose of the commission of the noble Baroness, Lady Greengross, is to build on the work of the National Autistic Society and advise on the policy changes required to ensure that people with autism can access the right support as they get older and that they have equal access to older people’s services. Here, I should declare an interest as a vice-president of the National Autistic Society.

The society’s research shows that local authorities often do not identify adults with autism living in their area and do not plan and commission services to meet their needs. As a result, many fall into the gap between mental health services and learning disability services. Too often, people with autism find that they do not fit into existing structures. I am reminded that, in my 20 years as a councillor, too often when I took up a case on behalf of a constituent I would be told by an official, “Sorry, councillor, he/she falls through the net”. But who created the net? Well, we did—councillors, parliamentarians and the Government. We created the net that so many people fall through.

This year, however, there are two major opportunities to begin to change this. First, the Government are reviewing the adult autism strategy. This is a chance to assess progress on implementing the strategy so far and to identify and remove barriers preventing the much needed transformation of services to support adults with autism. Secondly, in the Queen’s Speech we have the Care Bill, which promises a fairer system for adults with disabilities. It is a good start, but it, too, can be improved. This Care Bill is important, as it relates to social care laws for adults and will provide the framework for adult care and support services in the future. I hope that the Bill will ensure that the duties covered by the statutory guidance in the Autism Act continue to apply to local authorities and the National Health Service.

Social care must no longer be a service of last resort. Under the current system, too many people become eligible for support only when their needs become acute and they require intensive, high-level care and crisis management. Research by the National Autistic Society shows that only 10% of people with autism receive social skills training, yet 55% would like to receive it; that only 10% of people with autism receive employment support, but 53% would like to receive it; and that just 17% of people with autism have access to a social group, yet 42% would like to. Many adults with autism would benefit greatly from low-level services such as befriending or social skills training, which would help them to avoid isolation and allow them to participate in society. A lack of access to these services can have a devastating impact. A third of adults with autism who responded to a National Autistic Society survey said that they had developed serious mental health problems as a result of lack of support.

Crucially, evidence from the National Audit Office shows that providing low-level services is cost-effective and prevents people from developing more complex problems. Its 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”.

I want the Care Bill to guarantee that local authorities are under a duty to identify people with low-level needs to prevent and delay further needs accruing. They must also be held accountable for the exercise of these duties.

Many adults with autism are not eligible for support under the current system, leaving their needs unmet. The National Autistic Society, as a local service provider, knows that community care assessments can vary depending on where you live and on who assesses you. I therefore welcome the Government’s proposal to introduce national minimum eligibility criteria so that people will be assessed on the same set of criteria across the country. However, in order for the new system to be fair for people with autism, the Government must ensure that social and communication needs are given equal weight to physical needs in the eligibility assessment. The new eligibility threshold must be equivalent to moderate needs under the current system. This is essential if the Government are to succeed in their stated aim to prevent or delay care needs developing and to support people when they need care. Better we do that than intervene only at crisis point.

The National Autistic Society, 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. Many people with autism can make a valuable contribution to the workplace, but they must be supported to do so. This can mean full-time or part-time employment, supported employment, internships or work experience. At present, far too many people with autism are missing out on the opportunity to fulfil their ambition and potential, while society is missing out on their talents. Just 15% of people with autism are in full-time employment. Furthermore, 26% of graduates with autism are unemployed, which is by far the highest rate of any disability group. As many as 79% of people with autism on unemployment benefits say that they want to work but need support to retain full-time employment.

We cannot change these things overnight, but the figures that I have given show just how far we have yet to travel. Indeed, we have a great opportunity to start to make a difference so that people who are disadvantaged in the way that people with autism are disadvantaged can enjoy the opportunities that those of us in this House have enjoyed throughout our lives and, indeed, the opportunities that most people in this country take for granted.

Let no one believe that the Care Bill is the light at the end of the tunnel. It is not that but, coupled with the Autism Act, it is our chance at least to see the tunnel entrance. I hope that, through the Care Bill, we will establish ways in which people with autism can enter and remain in employment. I hope that the Government will be open to working with noble Lords on all sides of the House to make sure that the Care Bill succeeds, but I also hope that the Government are open to helping to make it a better Bill, which I am sure the contribution of noble Lords across the House will do.