Welfare Reform Bill

Memorandum submitted by The National Autistic Society (WR 23)

 

Welfare Reform Bill 2011- Submission to Public Bill Committee’s Call for Evidence

 

About the NAS

The National Autistic Society is the UK’s leading charity for people affected by autism. We have 20,000 members, 100 branches and provide a wide range of advice, information, support and specialist services to 100,000 people each year including a welfare rights helpline and Prospects, the NAS’ specialist employment service for people with autism. A local charity with a national presence, we campaign and lobby for lasting positive change for people affected by autism.

About autism [1]

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 have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.

Research has shown that 1 in 100 children has autism and recent figures from the NHS Information Centre have confirmed a similar prevalence figure among adults. [2] By applying the 1 in 100 figure we estimate that there are approximately 350,000 working age adults with autism in the UK, of whom just 15% are in full-time employment. [3]

Welfare Reform Bill and Disability Living Allowance (DLA)

Since the Government announced that £1 billion is to be cut from the projected spend on Disability Living Allowance (DLA) over the next three years and that DLA would be replaced by a new benefit Personal Independence Payment (PIP), the NAS has been inundated with emails and calls from people with autism and their families worried about the proposed changes.

In response to this we carried out some qualitative research on what people use their DLA for and the impact that losing the benefit could have. This resulted in the publication of our ‘Who Benefits?’ report [4] , which outlines the central importance of DLA for people with autism and shows that for many it is an absolute lifeline.

On 10 March, in response to a written question [5] , Minister for Disabled People Maria Miller said that the Government agreed with many of the points raised in ‘Who Benefits?, and are looking closely at how these recommendations can be incorporated into the design of the assessment.

We welcome this commitment and look forward to working with the Government to make sure that the needs of adults with autism are fully considered in the design of the new benefit. In particular, we believe that there should be safeguards put on the face of the Bill and we have indicated in this briefing where we believe that these safeguards could be added.

The NAS is also a member of the Disability Benefits Consortium (DBC), and we fully endorse the DBC’s briefing.

1) Impact of the cut and design of the new assessment

Disability Living Allowance (DLA) is a key benefit for people with autism to help them meet the additional costs that arise as a result of their disability. People with autism are some of the most vulnerable in society and we urge the Government to ensure that their needs are taken into account as they design the new benefit. We know that they routinely struggle to access the services they need and consequently outcomes are poor and our research indicates [6] :

· Over 60% of adults with autism rely on their families for financial support and 40% live at home with their parents

· 63% of adults with autism report that they do not have enough support to meet their needs

· As a result of this lack of support, a third of adults with autism have developed a serious mental health problem

· Just 15% of adults with autism are in full time employment

We surveyed how people with autism use their DLA as part of our latest campaign ‘Who Benefits?’ Hundreds of people responded to our survey telling us that they were reliant on it to travel independently, access community services and get the support they need to manage their day to day lives. Without it, people told us they would be socially isolated and would be much more likely to have poorer mental health.

A 2009 National Audit Office (NAO) report [7] demonstrated the huge savings that could be made in the medium-to long-term by ensuring that the needs of adults with autism were met. The report focused on adults with Asperger syndrome and high functioning autism – whose needs are often least obvious. It found that identifying these individuals and supporting them could save over £67 million a year depending on how many people were identified. Much of the support that would help ensure these savings would be low level support, such as travel training, outreach and social skills training. It is unlikely that people with autism would be able to access through social care budgets because of eligibility criteria. We know that some people with autism are using their DLA to fund this type of support, potentially saving significant funds to the public purse.

The design of the assessment, including any descriptors used to determine eligibility, must therefore be developed to take into account the difficulties people with autism have as a result of their disability. This must include difficulties with social communication, imagination, interacting with other people and sensory sensitivities. Experience has shown us that descriptors can be by their very nature narrow and remove the ability to take a broad and holistic look at a person’s extra needs. If they are to be used, then great care must be taken to ensure that they are fair and fit for purpose.

In order to make sure that the needs of people with autism are fully recognised by the new assessment, we strongly recommend that people with autism and their families are involved in its development and that the assessment is piloted with them.

Recommendations

· The design of any new assessment must take full account the difficulties experienced by people with autism in their daily life and people with autism and their families are fully involved in the development of the new assessment.

· The Bill should stipulate that individuals with a disability, their families and disability organisations will be involved in the developing the descriptors and in developing the assessment

2. The assessment process

We have specific concerns about the introduction of a face to face assessment for the new benefit, particularly given our experiences of the Work Capability Assessment (WCA). The WCA was introduced in October 2008 to assess eligibility for Employment and Support Allowance (ESA). The assessment includes a face-to-face assessment with a medical professional.

The National Autistic Society followed a group of people with autism through the WCA process and identified that the medical assessment was a particular barrier to having needs fully assessed, particularly as many reported that the Atos doctors undertaking the assessment did not have a full understanding of the needs of people with autism [8] . This is unsurprising given the low awareness and understanding of autism across health, social care, education, employment and benefits. Research carried out by the NAO in 2009 found that 80% of GPs felt that they needed more training to help people with autism [9] . The example below shows how easily a face to face assessment with a professional that does not understand autism can lead to that individual being unfairly assessed.

Anne

Anne is in her early 20s and was recently diagnosed with Asperger syndrome. Keen to get the support she needs to find work, Anne recently applied for Employment and Support Allowance. Three days after getting a formal diagnosis of Asperger syndrome Anne went for her medical assessment. The doctor carrying out the assessment rushed through the appointment in just 15 minutes, asking nothing about Anne’s Asperger syndrome and ignoring a 7 page psychiatrist’s report about her diagnosis. The doctor then recorded that he saw "no evidence of communication difficulties" in his report to the ESA decision maker, despite communication difficulties being fundamental to a diagnosis of Asperger syndrome. Six days later, Anne’s application for ESA was rejected. She later found out that she had been scored zero points on her medical assessment. It was only after going to a tribunal that Anne was finally awarded the benefit to which she was entitled.

The case study demonstrates the importance of ensuring that any decision around the allocation of a benefit takes into account any expert assessment of an individual. We would not expect every medical professional to have a specialist understanding of autism, so where expert reports are available, they must be used. Expert reports will be much more comprehensive than any assessment made by a benefits assessor is ever likely to be. In instances, where a detailed report of need, carried out by a specialist is available, we would question the value of a face to face assessment with someone who does not have this expertise. The face to face assessment will add unnecessary anxiety to the individual, who has probably already been subject to numerous assessments and tests. It also makes the process more costly at a time where finances are increasingly tight.

We therefore recommend a tiered approach to the new assessment process. A paper based assessment, including a self assessment and expert reports would constitute a first ‘tier’ to the assessment process. If a person’s needs can be demonstrated without them having to attend a face to face assessment, then carrying these out as a matter of routine will be an unnecessary expense. If need has not been sufficiently demonstrated through this process, it would be at this point that a face to face assessment could be introduced. We also believe that a paper based assessment should be sufficient for those who currently qualify for higher rate mobility as a result of a "severe mental impairment".

Lord Freud recently stated during a Lords’ debate [10] that where it is ‘not realistic, helpful or appropriate’, the Government would not insist that applicants for PIP be seen face to face. We would welcome further clarification of what this means and safeguards on the face of the Bill to ensure that individuals are not put through a face to face assessment.

Recommendations:

· Safeguards should be put into the Bill so that those who have sufficient written evidence to show their entitlement to the benefit do not have to go through a face to face assessment unnecessarily.

· The Bill should set out that all assessments will take into account expert reports and evidence

3. Training for assessors

The difficulties of the face to face assessment part of the WCA are not confined to autism and the recent review of the WCA, carried out by Professor Malcolm Harrington, recognised this. Professor Harrington recommended that there needed to be "mental, intellectual and cognitive" champions in each medical assessment centre" to support professionals in assessing those with "mental, intellectual and cognitive disabilities" for ESA. We support this recommendation if it means that there will be professional with expertise in autism in each medical centre.

We also believe that professionals involved in any future face to face assessments for DLA will need access to this type of expertise too.

As well as accessing more expert support, any assessor will also need training in autism to recognise support needs in less complex cases and to be able to know when to ask for more expert support in more complex cases.

Recommendation

· Safeguards should be put into the Bill to ensure that professionals carrying out the assessment have appropriate training, including in autism

4. Support for the role of advocate

Because autism is a disability that affects an individual’s ability to communicate, and to use social imagination, the role of advocate is extremely important for people with autism when they are involved in face to face interviews. An advocate can be a relative, carer, or a professional who can help them through the process. Often, for example, a person with autism will need someone to ‘translate’ questions for them, so that they can provide the right answers. It is important that everyone applying for the PIP is informed of their right to have someone help them through the application process. Those who want an independent advocate must be supported to access one.

Our report ‘Don’t Write Me Off’ [11] found that, even where people have a willing advocate, that person can be actively prevented from helping the person they are trying to represent. It is therefore imperative that the role is not only allowed, but supported by all involved in the assessment. The case study below is from ‘Don’t Write Me Off’ and demonstrates the importance of advocacy.

Stefan and Gail

Gail told us: My intention was not to speak for Stefan. Stefan was going to answer every question herself. When we went in, the doctor asked Stefan questions and all I did was translate. That’s how I see what I do, I translate. So if he asked her a question like ‘What are you doing at the moment?’ then I just translated that into ‘Can you tell us what you’ve done this week?’ So I translated the questions and Stefan answered.

At this point Stefan had not answered one question directly, only through me. He came to the last question and he said, ‘How do you see yourself, Stefan, in three years’ time?’ and I started to speak to try and explain what he meant because Stefan didn’t understand. It’s too abstract for Stef. Then he said ‘I don’t want you to do this anymore. I want Stefan to now answer questions from what I’m saying.’

She really just didn’t understand how he was putting it, and he said ‘This is just what I wanted to know, that she really wouldn’t understand everyday conversation from an unfamiliar person.’

Recommendation:

· The Bill and regulations must make it clear that parents and carers are able to fully support individuals through the process and that those who need support from an independent advocate, such as those with autism, will have a right to appoint an advocate

5. Children

We welcome the current direction from Government that children’s DLA is not going to be reformed. As a DWP research paper [12] from last year found, there are significant differences between the needs and experiences of adult benefit recipients, and parents of child recipients of DLA.

Recommendation

· The Government should stand by its initial decision not to include DLA for children in this reform

6. The Mobility Component for those in residential care

We are opposed to the Government’s plans to scrap the mobility award for people in residential care.

The reason given for the removal of the mobility component from people living in residential care was based on an assumption of ‘double funding’. However, evidence shows that local authorities are not currently meeting mobility costs. Moreover, rather than removing ‘an overlap of public funds’ as the government has stated, this measure will simply transfer costs to already-stretched local authorities or will leave people without the vital support that they need.

Many disabled adults living in residential care have all their income taken to pay for their care, and are left with just the £22 per week Personal Expenses Allowance (PEA). This is not intended to cover additional mobility costs. It is intended to cover personal costs such as clothes, toiletries and phone bills. Without the mobility component, the PEA is not enough to cover additional mobility costs and people will be left without the money to meet basic mobility needs.

The resulting savings of £160 million are relatively small in contrast to the total of £81 billion in spending cuts the government plans to make by 2014/15. However, the impact on the 80,000 disabled people to be affected will be massive, with many left unable to afford to leave their home and denied the independence most people take for granted.

The Government has now decided to delay the implementation of this proposal for 6 months, while they review further evidence. We believe that the review is unnecessary and the proposal should simply be abandoned.

Recommendation

· The decision to remove access to the mobility component for people in residential care should be reversed

March 2011


[1] The term autism is used throughout this document to refer to all people on the autism spectrum including Kanner autism, Asperger Syndrome and high-functioning autism.

[2] Brugha, T et al (2009) Autism Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007 London: The NHS Information Centre for Health and Social Care.

[3] Based on a working age population of approximately 37 million people and a prevalence rate of 1 in 100.

[3] Baird G, et al. (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special

[3] Needs and Autism Project (SNAP). Lancet, 368, 210-215.

[3] Reid, B. (2006) Moving on up? Negotiating the transition to adulthood for young people with autism. London: NAS.

[4] James, L (2011) Who Benefits? London : National Autistic Society

[5] http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110310/text/110310w0003.htm#11031072001181

[6] I n 2007, we surveyed over 1,400 adults with autism and parents about their experiences of living with autism as an adult. The findings are presented in our I Exist report. See: http://www.autism.org.uk/~/media/NAS/Documents/About-autism/Autism-library/Magazines-articles-and-reports/Reports/Our-reports/I%20Exist%20-%20the%20message%20from%20adults%20with%20autism.ashx

[7] National Audit Office (2009) Supporting People with Autism Through Adulthood . London : NAO

[8] Redman et al (2009) Don’t Write Me Off London : NAS

[9] National Audit Office (2009) Supporting People with Autism Through Adulthood . London : NAO

[10] http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/110310-0001.htm#11031058000256

[11] Redman et al (2009) Don’t Write Me Off London : NAS

[12] DWP Report 649 : The impact of Disability Living Allowance and Attendance Allowance: by Anne Corden, Roy Sainsbury, Annie Irvine and Sue Clarke