Memorandum by the RNID (DM 33)
1 - This submission is based on evidence resulting from new research into deaf people's experiences of claiming Disability Living Allowance and Attendance Allowance. It concentrates mainly on DLA as the benefit where we see consistently poor decision-making and a high rate of successful appeals.
2 - Key statistics from the research show the extent of the problem;
§ 57% of people who had applied for DLA had been turned down at some point, and three in ten had been refused DLA more than once.
§ Eight in ten people who had been refused appealed against the refusal, with 78% of them being successful in their appeal. One in five people abandon their claim at this stage.
§ 85% of people who had taken their appeal to tribunal had been successful in having the decision overturned. This includes 91% of those who use British Sign Language (BSL) as their first language.
3 - The main contributing factors to poor decision making are;
§ A form that is difficult to understand and complete, especially for people who use BSL.
§ A lack of awareness of decision-making staff and medical assessors of the needs of deaf people.
§ Guidance on deafness that is not being followed correctly.
4 - We conclude that more flexibility is needed for deaf people claiming DLA, with more accessible forms, stronger guidance and an adequate level of deaf awareness training for staff. The facts remain that too many deaf people are forced into making appeals, when a correct decision in the first instance would serve to save time and public money, as well as target a key benefit more effectively.
1.1 The key benefits claimed by people on the grounds of hearing loss are Disability Living Allowance and Attendance Allowance. RNID's Welfare Rights service deals mainly with rejected claims for DLA, and for each of the past five years has recouped more than £125,000 for clients. The evidence from the service is that the quality of the decisions made not to award DLA to deaf people have not improved, and we remain concerned that many people are being denied the very benefits designed to help them.
1.2. In 2008, we conducted research with 1315 users of RNID's Typetalk, a telephone relay service, to find out about their experiences of claiming both DLA and AA. This followed on from similar research conducted in 2001, and found that little had changed in the intervening years. All the figures in this submission relate to this new research unless otherwise stated.
1.3. At the time of the research there were almost three million claims for DLA in payment, and over one and a half million claims in payment for AA. Of these, 36,900 DLA cases and 3,700 AA cases were awarded on the basis of deafness as the primary qualifying condition. Of course, the number of claimants who are deaf will be larger than either of these figures, as many claimants will have other health problems or disabilities for which they may be eligible to claim.
1.4. The evidence for poor quality decision-making on DLA is clear. If decisions were more accurate, we would not see such a large success rate for appeals. We believe that there are a number of contributing factors that lead to inaccurate decisions being made. These include; the claims forms, the guidance to decision-makers and the ways in which this guidance is applied.
2 - DLA refusals
2.1 Our research found that more than half (57%) of those who had applied for DLA had had a claim refused at some point. This rate of refusal has hardly changed at all since 2001, where 56% of respondents had faced rejection.
2.2 In the survey, 87% of claimants were currently in receipt of DLA. This shows that a significant proportion of people have their initial claim turned down when subsequent approval shows they were entitled to the benefit all along.
2.3 More than three in 10 of those who had had a claim for DLA rejected had been rejected on more than one occasion. The number of rejections appears to make no difference as to whether someone was receiving DLA at the time of the research, with 77% of those facing one refusal and 78% of those with multiple refusals later getting DLA.
2.4 Eight in 10 people who had had a claim turned down decided to ask for this decision to be reconsidered or lodged an appeal against it. However, one in five people did not take action against the refusal to grant DLA. 34% of these simply accepted the decision, while 40% said that any further action would be too much trouble or too stressful and 16% said that it would involve too much paperwork. It seems as though the sheer complexity of the appeals process puts people off from claiming a benefit that they could qualify for.
2.5 The other main reasons for doing nothing after a rejected claim concerned a lack of knowledge about reconsideration or appeal. One in four said that they did now know where they could get help with challenging a decision, and one in eight said that they did not know how to appeal. Also, one in five whose claim for DLA had been rejected did not even know that they could appeal against the decision. Poor decision-making, coupled with a lack of information will lead to people not claiming the benefits to which they are entitled.
3.1 Our research shows that making an appeal or asking for a reconsideration of the decision to reject a claim can be very beneficial. Of all of those people who had had a claim for DLA rejected, over three-quarters (77%) were actually in receipt of DLA at the time of the survey. This must raise further concerns about the quality of the decision-making process. Even recognising that the number will include some people who may have made separate claims with a lengthy gap between each application, it still suggests that too many people with a valid claim for DLA are being rejected without good reason.
3.2 Information about reconsiderations of decisions and appeals should be made more freely available to claimants, and sources of help should be more clearly signposted. However, we would rather that claimants do not need to go through the complex, lengthy, time-consuming and possibly difficult process of appealing at all, and that the right decisions are made first time.
3.3 This also has ramifications for those people who did not choose to appeal, or did not know that they could, as it is likely that a significant number of these people be eligible for DLA and are therefore missing out on the valuable extra income it provides.
4.1 Of those people who took their appeal to tribunal, 85% had the initial decision overturned. Whether or not a claimant had any additional health problems or disabilities made no difference to whether a claim was successful or not, indicating that those whose claim was based on deafness alone are as likely to succeed as those with more complex needs.
4.2 There is some indication that BSL users are likely to be more successful, in that 91% of them had decisions found in their favour, compared to 83% of those whose first language is English. Whilst this may show that the tribunal system does work for people who are deaf, it is another indictment of the original decisions and those responsible for them.
4.3 Tribunals are an expensive drain on the public purse, and require a great deal of time and effort from individual claimants and those who support them. If the original decisions had been more accurate and the majority of this 85% had had their initial claims accepted, time and money would have been saved.
5. Review and renewal
5.1 A growing trend, especially amongst deaf claimants, is for them to have their claim stopped. One in six claimants who had been receiving DLA has, at some point, had their claim stopped either on periodic review or renewal. The sudden loss of benefit can be quite shocking for deaf people, and the financial loss leaves them with a loss of income that they simply cannot make up from other sources.
5.2 We found that the rates of stoppage were higher (21%) for people with BSL as their first language than for those with English as their first language (14%). This suggests again that there is less awareness of the needs of people who are profoundly deaf, and that they are more likely to face the distress and anxiety of losing their benefit without good cause.
5.3 Once more, our research raises questions about the accuracy of the decision to stop DLA in such cases, as 94% of those who had experienced a stoppage of their benefit were in receipt of DLA at the time of the survey.
6 Why are poor decisions being made?
6.1 One of the main reasons that bad decisions are made so frequently is that the form itself presents a barrier to the provision of accurate and relevant information. Three-quarters of the people who had made a claims for DLA in our survey said that they found the form difficult.
6.2 Two in three of these people said that they thought that the questions on the form were not relevant to deafness, with a similar number saying that they found it difficult to explain their needs. The current form prompts a claimant to provide information about their ability to 'understand' people, read letters, fill in forms and use the telephone. It also asks whether people find it difficult to ask for help when it is needed. A further question does prompt people who use BSL to indicate this when asked about the help they need from another person to communicate. Whilst the form has improved with respect to the information required of people who are deaf, there are still issues regarding its relevance to their daily lives. The use of the word 'understanding' rather than 'hearing' is one source of confusion, and the fact that difficulties resulting from hearing loss are included along with difficulties with comprehension resulting from mental health problems and learning difficulties could mean that some people who are deaf are discouraged from providing relevant information where needed.
6.3 The accompanying guidance booklet for help in filling out the DLA form can also be quite confusing and difficult to read if a person's first language is not English. Further evidence of this is found when we see that 47% of those responding to this question said that it was not made clear what information they should provide.
6.4 More than half (56%) of people with BSL as their first language who found the form difficult stated that they did not understand some of the questions. It is obvious, then, that the DLA form needs to be made much clearer for people who are deaf in order for them to make a claim without encountering unnecessary barriers.
6.5 We believe that there is little understanding of the real impact that deafness and hearing loss can have on an individual, and a corresponding lack of knowledge about the support that DLA can provide. RNID's Welfare Rights service has numerous examples of rejected claims where the decision maker has quite evidently not complied with existing guidance on hearing loss. There have also been a number of cases where existing case law has been misquoted as a reason for refusal to grant DLA.
6.6 Examples of the kinds of problems faced by deaf claimants can be seen in their experiences of medical examinations for DLA. Our survey found that just over half of those required to undergo such an examination reported that they had found the examination a problem. This situation has worsened since 2001, when 60% of those who had undergone a medical examination had been 'satisfied' with it.
6.7 The main reasons for people reporting a problem are either that they have difficulty communicating with the doctor and a feeling that doctors do not understand deafness. This latter finding is disturbing, as it suggests that those people employed by DWP to undertake examinations do not have the necessary expertise to deal comprehensively with the needs of people who are deaf. Those claimants who state that deafness is a factor in their claim should at least have the option to be examined by a health professional with a good understanding of deafness and be able to conduct the examination accordingly.
6.8 It is disappointing to note that one in seven people with BSL as their first language said that they had asked for communication support for the examination, but did not receive any. Not only does this make communication during the examination very difficult, but is very likely to be in breach of the duties of the DWP under the Disability Discrimination Act. It is absolutely vital that medical examinations are conducted with the appropriate requested professional communication support, as the lack of this will lead to incorrect decisions being made and people being denied their benefit.
Our research and other evidence shows clearly that the current system is simply not working well enough for deaf people. The forms are over-long and complicated with little useful guidance. If the forms were more straightforward for people who are deaf to complete, decision-makers would have a better chance of making the correct decision at the first attempt. Likewise, the accuracy of decisions would be improved markedly if DWP staff - including decision-makers and health professionals - had received at least some basic form of deaf awareness training. Until this happens, the mistakes of the past eight years and further are likely to continue and many people who are deaf will continue to miss out on the very benefits that are designed to help them.
 August 2008 figures show 2,967,800 DLA claims in payment, with a further 1,529,100 for AA