Welfare Reform Bill

Baroness Healy of Primrose Hill Excerpts

Tuesday 13th September 2011 Lords Chamber

[Baroness Healy of Primrose Hill]

My Lords, I too would like to raise an issue of grave concern to the families of adults with an autism spectrum condition. The National Autistic Society estimates that there are 350,000 working-age adults with autism in the UK, of whom just 15 per cent are in full-time employment. This Bill will have a profound impact on their lives.

Many of these adults are relying on disability living allowance, which under these proposals will be replaced by a new benefit of personal independence payment. The proposal to cut £1 billion from the projected spend on disability living allowance over the next three years is causing them and their families alarm, as my noble friend Lord Touhig has mentioned. As one parent of an adult with Asperger’s syndrome says:

“Without DLA I can say with absolute assurance my daughter would have to give up her entire independence”.

She goes on to say that this could lead to the return of her daughter’s depression and suicidal thoughts.

Families are especially concerned about the new assessment criteria and descriptors to receive the new benefit. They have grave doubts as to how the new assessment process will work and about the standard of training of the assessors. As one mother of an adult son with Asperger’s wrote to me of the PIP assessment:

“I am now very concerned that unless huge changes are made to both the questions and the way in which the assessment is carried out it will not reflect the complete needs of adults with autism”.

People with autism suffer four main areas of difficulty, which are worth restating: all forms of social communication; recognising or understanding other people’s emotions and expressing their own; understanding and predicting other people's behaviour; and sensory issues which can greatly impact on their ability to function at home and especially in the workplace. These difficulties make finding and retaining employment very challenging. Those with autism have a need for routines and an aversion to change. Periods of change cause a great deal of anxiety and can be very difficult for them to manage.

These are the reasons that people with autism and their families fear that the proposals in the WRB, however well intended, will result in real crisis for many who are struggling to participate and integrate into everyday life. The Government should not underestimate the cost of medium and long-term impacts that would be caused by people with autism losing their DLA or PIP entitlement. These would include the increased demand for mental health services, increased demand for primary care services, loss of employment, and the costs of homelessness and family breakdown. Many families feel that government-provided services make no accommodation for their loved ones’ unique set of requirements. They believe that this Bill will not improve the position of autistic adults. The Government will need to spend time assessing their needs and reassuring them that the proposals will be able fully to take into account the needs of adults with autism, some of whom are the most vulnerable in society.

The National Autistic Society estimates that over 60 per cent of adults with autism rely on their families for financial support and 40 per cent live at home with their parents. Sixty-three per cent of adults with autism report that they do not have enough support to meet their own needs. As a result of this lack of support, a third of adults with autism have developed a serious mental health problem. The parents of these adults live in fear of what the future holds for their children when they are no longer alive to care for them.

This Bill is in danger of reducing the independence, standard of life and dignity of these we as a humane society have a basic duty to protect. Many people have contacted me, as they have contacted other noble Lords, about the proposals in this Bill to express their fear of what it will mean for their lives. I have been struck not only by the severe difficulties they face but also by the sheer determination they express to get on and live useful, independent lives to the best of their ability with just a little help from the state.

If we are to learn from the mistakes of the past, the Government must acknowledge the genuine concerns of those families caring for and supporting their autistic adult members. They need to recognise that everyone with an autism spectrum condition will present differently. Some of these adults are more able than others but they all have autism, which affects them in vastly different ways. The Bill needs to reflect this reality.

There are a number of faults that need correcting. The National Autistic Society believes that the descriptors do not adequately reflect the complexity of autism conditions. This could mean adults with high-functioning autism or Asperger’s syndrome would not qualify under the criteria and would be unfairly affected. The draft regulations do not take into account some of the specific needs of people with autism and, as a result, a significant number of adults with autism will fail to qualify for the new benefit.

There are omissions from the criteria for adults with autism. Safety and the ability to understand hazards and danger are not spelt out in full in the draft regulations, and nor is the fact that some adults with autism display challenging behaviour that may result in damage to property, yet it is unclear how these would be taken into account in the current criteria. A one-off interview is not an effective diagnostic assessment of autism-spectrum conditions. Such conditions can change over hours and in different environments. Face-to-face assessments will add unnecessary anxiety to the individual, who has probably already been subject to numerous assessments and tests, as my noble friend Lord Touhig has already so eloquently explained. The pressure group Act Now points out that the purpose of the Autism Act 2009 and Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England is to lay the foundations for the change that is much needed for adults with autism, but families fear that this Bill fails to recognise the strategy by not addressing the complex needs of people with autism.

I urge the Government to consider three important improvements. First, the Bill should include an offer of a communications advocate; secondly, it should provide for a proper and detailed transition plan individually tailored to each person's needs, which is vital for people with autism; and thirdly, where expert reports are available, they should be used in place of a face-to face assessment and the intense anxiety it creates, and adults without such reports should be assessed by an appropriately trained professional who understands autism. If the Government are serious in their efforts to achieve a better system then surely they must build a structure that truly helps our citizens to lead fulfilling and rewarding lives.