Work & Pensions CommitteeWritten evidence submitted by the National Autistic Society (NAS)
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.
Overview
1. 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
2. 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,
3. On 10 March, in response to a written question,
4. We are not opposed in principle to the review of DLA as it has not always worked as well as it should for people with autism. We commonly hear of people with autism and their families having to battle to access DLA. In particular, the current application system tends to focus too much on physical disabilities. Therefore, reform to DLA has the potential to ensure that the award better reflects the true needs of people with autism.
5. However, we have very significant concerns about the way the Government has proposed to replace DLA with the new benefit. We therefore welcome the Work and Pensions Select Committee’s inquiry into the reform and would also welcome the opportunity to give oral evidence to the Committee, if requested.
6. Below, we set out our position on the key areas covered by the Select Committee as laid out in its terms of reference.
About Autism
7. 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, light or colours.
8. 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.
9. 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.
The implications of a reduction in expenditure, including: the implications of focusing on those with the greatest needs
10. 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, routinely struggling to access the services they need. Consequently outcomes are poor, indicated by our research:
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.
11. 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 more socially isolated and would be much more likely to have poorer mental health.
12. The Government have said that they want to focus on those with “greatest need”, but have yet to fully explain what they mean by this. Looking at the draft criteria for the benefit, it appears that the Government are replicating the social care system in defining greatest need rather than looking holistically at the individual, the barriers they face in gaining/maintaining independence and the costs incurred as a result of their disability.
13. We are very worried that those who have considerable extra costs because of their disability, but have what is perceived as lower needs in relation to care and support will lose out as a result of these reforms.
14. A 2009 National Audit Office (NAO) report
The design of the PIP assessment, including: the assessment criteria and design; whether the assessment can objectively assess those with mental, intellectual and cognitive conditions and with fluctuating conditions
Assessment criteria
15. It is vital that any descriptors used to determine eligibility must 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 with the Work Capability Assessment (WCA) for Employment and Support Allowance (ESA) has shown us that descriptors can be by their very nature be very narrow and their use removes 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.
16. We were pleased when the Government in statements and documents placed emphasis on criteria such as communication and ability to plan a journey. We had also stressed the importance of involving people with autism and their families in the development of the assessment, and felt that DWP’s request to help them find 60+ people with autism who would be interested in helping test the draft criteria was a positive development. We are currently gathering feedback from some of the volunteers with autism who took part in the testing of the draft criteria and we would be happy to share this with the Committee.
17. However we have deep concerns about the draft criteria and descriptors which were published in May. Our full response to the DWP
Draft assessment criteria
18. The criteria and their attendant descriptors, despite emphasis from the Government on issues of independence and participation and society, seem to mainly focus on the bare minimum needed to survive. The Government has said that “Personal Independence Payment will consider the impact an individual’s impairment or health condition has on their daily life”. Yet, the criteria appear to focus on care and support needs.
19. Moreover, despite the Government’s stated adherence to the social model rather than the medical model of disability, the criteria and descriptors focus on the physical. For instance, a person only gains points in various scenarios if they require continual or intermittent assistance—defined as physical intervention.
20. Ideally the definition of assistance in the draft regulations needs changing to include non physical intervention, and should be interpreted broadly to cover supervision, as well as direct physical assistance. The general lack of reference to supervision throughout the regulations also represents a massive gap regarding something vital to ensuring that some people with disabilities are safe. As well as ensuring an individual’s safety, supervision is also needed by some people with a disability to support the development of more independence.
21. Communication and planning a journey are extremely important with respect to the autism spectrum, and while we welcome their inclusion in the criteria, we have concerns about how they are currently drafted.
22. On communication, we believe that the descriptors over simplify what it means to be able to communicate, but at the same time conflate the ability to communicate with the ability to make a decision and make that known. Communication covers so many aspects: being able to speak to another person face to face; making oneself understood; and understanding the nuances of language, tone of voice etc, and responding appropriately. These different levels of and barriers to communication are not reflected adequately in the descriptors.
23. Communication support for individuals with autism may be provided by a family member or a friend as opposed to a trained professional. It is unclear from the descriptors or the guidance whether and how this type of communication support would be taken into account and whether an individual could qualify for PIP as a result. The technical notes refer to whether an individual needs communication support as meaning assistance from a “trained person”. It is important to recognise that the fact that an individual with autism can, with the help of a carer or family member, communicate with someone unknown to them does not mean they do not have a disability. Indeed the requirement to have this helper present at all times incurs higher costs, for which PIP/DLA is supposed to compensate.
24. We are also concerned about how suitable an interview environment is for a professional to properly and accurately assess an individual’s communication difficulties. For example, if an individual on the autism spectrum has known about their interview for a number of weeks they may spend those weeks “practising” what to say and how to say in order to come across well—in a way that will not truly reflect their actual communication struggles. Therefore, they may come across as not having any noticeable communication difficulties and be wrongly assessed.
25. An effective diagnostic assessment to assess someone’s communication skills would often be carried out over period often of several hours across different days and in different environments. This demonstrates the real challenges of the current approach to the assessment in ensuring accuracy and fairness; if an autism expert needs a significant amount of time to fully assess communication skills, it would be a big ask to expect a generalist assessor to be able to accurately assess the communication needs of someone with autism in a short interview.
26. With regard to planning and following a journey, the descriptors are not useful in trying to describe the myriad of problems people with autism face with regard to travel. It is not clear for example whether they would cover people who find it difficult to use public transport due to sensory hyposensitivity; or how they would accommodate a person with autism who, after many “walk throughs” can execute a familiar journey, but who would suffer great distress and be unable to complete the journey if were affected by delays or detours.
27. We also have concerns that none of the descriptors appear to sufficiently take into consideration individuals, who are able to undertake tasks but require supervision in order to carry out the tasks safely.
28. Moreover, no criterion takes into account or covers challenging behaviour, self-neglect or self-harm. For example, one mother told us of her needing to watch over her son all night in order to make sure he doesn’t get up in the middle of the night to try and cut himself, as he is obsessed with knives. This is a great responsibility for her, and would also make holding down a job very difficult for her, meaning a severely reduced income—yet we are not clear where this would be covered by the current draft criteria.
The assessment process, including: lessons to be learned from the Harrington review; whether automatic entitlement for some is desirable; and delivery of the PIP assessment
29. We have specific concerns about the introduction of a face to face assessment for the new benefit, particularly given our experiences of the WCA, which includes a face-to-face assessment with a medical professional.
30. NAS 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. 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. 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 seven 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.
31. 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.
32. We therefore recommend a tiered approach to the PIP 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”.
33. Lord Freud recently stated during a Lords’ debate 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, if inappropriate.
34. We have also been emphasising to government how crucial the role of a supporter / advocate is for people with autism, if they do have to undergo a face to face assessment. The Government has accepted our recommendations and given assurances that the role of advocate will be strongly supported.
35. Our concern in this area is that we have heard of supporters/carers who have been ignored when trying to support individuals through the WCA, so further reassurances about their role in this process would be welcome.
Delivery of the assessment
36. 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.
37. We also believe that professionals involved in any future face to face assessments for PIP will need access to this type of expertise too.
38. 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.
39. On a final note, in relation to training, we would like to make it clear that any training given to assessors must be robust and teach assessors how to recognise and assess someone on the spectrum. In the past, NAS has been mentioned in Parliament in the context of having supplied autism training to Atos, when in fact this “training” consisted of a one hour presentation at a conference comprising a basic introduction to autism.
The extent to which PIP will act as a gateway to other benefits, including Carers Allowance and the Motability Scheme
40. DLA is not only an important benefit in its own right but is also an important gateway to other benefits and Carer’s Allowance in particular.
41. We carried out a survey of carers in 2009. Over 300 carers responded to our survey and a staggering 83% of respondents were caring for someone with autism for over 50 hours a week, which among other things had a significant impact on their ability to work. Only just over half of respondents were in receipt of Carer’s Allowance, suggesting that already there are challenges to accessing the benefit. If the change to PIP means that fewer people will receive the benefit, this will make it harder for carers to claim Carer’s Allowance, but will not change the needs of those with autism who are being cared for. We urge the DWP to look carefully at criteria for Carer’s Allowance to ensure individuals are not being doubly disadvantaged by the change.
42. Concessionary travel, such as a blue badge or concessionary travel passes are another benefit that many people with autism find invaluable. Whilst local authorities must not use DLA or PIP as the only proxy for access to such benefits, leadership from Government will help ensure that people with autism can continue to access blue badge or concessionary travel passes even where they are no longer eligible for PIP/DLA.
43. Entitlement to DLA is also important as it passports to higher amounts of ESA, Income Support, JSA, Housing Benefit, Council Tax Benefit, Working Tax Credit and Child Tax Credit.
“DLA mobility is a gateway benefit that was required to obtain a concessionary bus pass, reducing the expense of travel because my sensory issues prevent me driving … I do voluntary work for the Citizens Advice Bureau which wouldn’t be possible without DLA mobility because of the bus pass.”
Adult with Asperger syndrome
How DLA/PIP should apply to children and people over the state pension age
44. We welcome the current direction from Government that children’s DLA is not going to be reformed. As a DWP research paper
45. We believe that, if the Government plans in the future to extend PIP to children as well as to those over the state pension age, then a separate consultation exercise should be undertaken, which deals with the specific issues relating to these age groups, and learns lessons from the implementation of PIP as evidenced through the independent reviews that are stipulated on the face of the Bill.
The steps DWP needs to take to ensure that its reform proposals are clearly and effectively communicated to claimants and the general public
46. The print media has over recent months run many stories about “scroungers” or the “work-shy”. As well as containing either huge generalisations, or unusual anecdotes, these stories often conflate DLA and work related benefits, wilfully or otherwise. “Disability benefit” has become a hashed, pejorative term for money received by people who can work, but don’t.
47. Obviously Government cannot control how the media reports issues, but care must be taken with regard to timing of press releases, and statistics contained therein.
48. The backdrop of the 20% cut in DLA spend (announced before the details of the DLA reform were announced); and the fact that the DLA reform consultation period closed after the Welfare Reform Bill was published, have not helped to dispel fears that this is a cost-cutting exercise, and that the Government is not really listening to some of the most vulnerable and isolated people in this country.
2 September 2011