Select Committee on Social Security Minutes of Evidence


Memorandum submitted by Disability Benefits Consortium (DLA 2)

SUMMARY

      —   Being disabled brings financial consequences—lower incomes and extra costs.

      —   Overall expenditure on disability benefits is not too high, indeed many people with extra costs receive insufficient help.

      —   Disability Living Allowance (DLA) is a cost effective and extremely valuable benefit which helps offset the extra costs of disability and promotes independence, rather than dependence.

      —   There are good reasons why the numbers of people claiming have increased, not least the extension of eligibility in 1992 to blind people and those with learning disabilities.

      —   The research which was used to justify the Benefits Integrity Project (BIP) is fundamentally flawed.

      —   BIP has been the cause of enormous fear amongst disabled people—whether or not they are likely to be directly affected.

      —   BIP has resulted in great hardship for those severely disabled people who wrongly lost their benefit.

      —   People in exempt categories are still being included in the programme.

      —   There have been no cases of confirmed fraud.

      —   BIP should therefore be suspended immediately. Its presence inhibits rational discussion of benefits reform.

      —   There are better ways of securing the integrity of DLA ensuring that payments are accurate and go to the right people.

What is DLA?

  1.1 DLA is a cash benefit for disabled children and adults under 65 who need help with personal care or have difficulty getting around. It is intended to offset the extra costs of being disabled. It was introduced in 1992 and was an extension of the earlier Attendance and Mobility Allowances. It is currently received by approximately 1.9 million people.

  1.2 DLA has two components, paid at different rates depending on severity of need. It is possible to get both components. The care component is paid at one of three rates £13.15pw; £33.10pw or £49.50pw, and the mobility component at two rates £13.15pw or £34.60pw. Children under five and adults whose disability arises over the age of 65 cannot get the mobility component.

  1.3 DLA is not means-tested, does not count as taxable income and is not dependent on a national insurance contribution record. Claimants can be in employment and get DLA.

  1.4 Claimants complete a long self-assessment questionnaire about their care and mobility needs. Their doctor or other referee then completes a section to comment on their illness or disability and how it affects them. Decisions on benefit awards are made by adjudication officers in the Benefits Agency who can ask for further medical evidence and always do so if the higher rate mobility component is likely to be awarded.

2. Why is DLA important to disabled people?

  2.1 Being disabled brings extra costs. DLA is important because it both recognises the existence of extra costs as well as providing help towards meeting them.

  2.2 There are many disabilities which involve specific expenses that do not apply to non-disabled people.

These are the most obvious direct financial costs of disability—non prescription medicines, hearing aids, sticks, wheelchairs, hoists, incontinence pads, handrails, home adaptations, ramps, tin openers, and so on.

  2.3 In addition, disabled people often have to spend considerably more on meeting general basic needs.

Extra heating, extra hot water, extra clothing, extra laundry, special diets, individual transport (taxi or own car) as well as needing to pay for cleaning, cooking or personal care. Items such as cars or freezers, which might be considered luxuries, are often necessities for a disabled person trying to live an independent life. Quality of life matters so things like home hairdressers and some one to cut the grass or wash the windows are also extra expenses.

  2.4 On top of these extra needs, disabled people may have to pay more for basic items. People with limited mobility may have to use the nearest, rather than the cheapest, shops for example.

  2.5 Most local authorities now charge for the provision of community care services to disabled people.

  2.6 Although triggered by the existence of care or mobility needs DLA is a cash benefit that can be spent in the way the disabled person feels is best. It thus promotes independence and self reliance. Without it there is the very real danger that many disabled people would be forced into expensive institutional care or to become dependent on their families or the local authority. In fact DLA is a very cheap way of the Government discharging its obligations, the higher rate of DLA care component is £49.50 pw. Considerably less than a week in institutional care or NHS provision.

  2.7 This Government accepts a direct link between poverty and ill-health. The provision of sufficient money for a severely disabled person to have a decent diet, warm home, keep themselves and their clothes clean and maintain social contacts fosters independence and reduces demand on the NHS.

  2.8 DLA also helps disabled people enter and keep employment by helping with extra costs, like an adapted car or better quality, more versatile wheelchair.

  2.9 DLA marked a significant breakthrough in that it put the disabled person at the centre of the assessment process. Disabled people are the best judges of the effects of their disability on their everyday lives. Although the self-assessment claiming process is complicated and difficult to operate it is very important not to lose sight of this principle.

3. History

  3.1 A major survey of disabled people, OPCS 1968-69, found a large group were not protected under the then existing schemes. These focused on those who had been in employment, with provision for industrial injuries and those covered by national insurance contributory benefits, and war injured. OPCS found large numbers of disabled people dependent on Supplementary Benefit. This survey also linked severity of disability with lowest income and greatest need. The findings led to the introduction of Attendance Allowance in 1970.

  3.2 The survey also identified lack of provision for people with mobility impairments. There had been provision of special vehicles since 1921 for war pensioners, extended in 1968 to some limited groups of non war disabled people. In 1976 a flat rate non-contributory Mobility Allowance (MA) was introduced.

  3.3 From then until 1992 the two benefits, Attendance Allowance (AA) and Mobility Allowance remained pretty much unchanged. 1992 saw the introduction of DLA—see 4.2 below.

4. Why have the numbers of people claiming DLA increased and will they continue to rise?

  4.1 Expenditure on DLA has increased consistently since 1992. In August 1992 there were 1,019,000 recipients, by August 1997 this had risen to 1,924,000, an increase of 89 per cent.

  4.2 Extension of eligibility: The categories of disabled people who could claim benefits was extended in 1992 with the introduction of DLA. DLA brought together the old MA and AA and introduced two new lower rates of each benefit. It thus extended eligibility to groups of disabled people previously excluded. Blind people and those with learning disabilities were two key groups to gain from the change.

  4.3 Historic under-claiming of disability benefits: Take-up of the old AA and MA was very low. The largest official survey of disabled people and their needs—the OPCS of 1985—found that nearly half (46 per cent) of their sample of disabled people with the maximum severity rating on personal care were not getting AA, and 21 per cent of those with the maximum severity rating for locomotion were not getting MA. More recent research, "First Findings from the Disability Follow-up to the Family Resources Survey" (March 1998), suggests that the take-up rate for DLA care is still low at 30 to 50 per cent though slightly higher for DLA mobility at 50 to 70 per cent.

  4.4 Publicity: The introduction of DLA in 1992 was accompanied by a huge publicity campaign, the success of which overwhelmed the Benefits Agency who took over a year to clear the backlog of claims which built up.

  4.5 No stigma: DLA does not suffer from the stigma of means-testing which is known to depress take-up.

Nor is it necessary to have a record of national insurance contributions—another barrier which has traditionally limited the number of women claimants of contributory benefits. In addition, the impact of the disability movement and greater visibility of disabled people within society will also have had an effect. Helping people to stop feeling ashamed of being disabled and to see themselves as citizens with rights will have led to increased take up of benefits.

  4.6 The introduction of community care: There are two relevant factors here. Firstly, in the past many disabled and mentally ill people lived in long-stay institutional care paid for by the NHS. Many of these people, and those who would have entered such care, now live independently in the community, with the help of disability benefits and domiciliary care services. An increase in social security expenditure reflects savings in other areas.

  4.7 Secondly, nearly all local authorities now impose charges for domiciliary community care services and almost all expect disabled people to use their DLA to help pay these charges. To help soften the blow of charging most authorities now also employ staff to help community care recipients claim benefits.

  4.8 The recently published Disability Survey (see 4.3 above) reports that there are about 8.6 million disabled adults in private households, a much higher figure than the 5.8 million found by the 1985 OPCS Disability Survey. The report suggests a number of factors which may explain this difference. These include; ageing of the population, given that the prevalence of disability is closely linked with age; the move from institutional care to community care; underestimation of numbers in earlier surveys. In addition, there have been numerous improvements in medical science which have resulted in increases in life expectancy amongst people with severe disabling conditions.

5. The Benefits Integrity Project (BIP)—background

  5.1 BIP was drawn up by the previous government and taken over by the current government following the election in May 1997. It was designed as a response to the findings of a survey carried out by the Benefits Agency's Benefit Review Team, which reported in January 1997. The review of DLA was just one of a series of detailed surveys of all benefits, initiated by the then Secretary of State, Peter Lilley, as part of a campaign against fraud.

  5.2 Forty interviewers each carried out some 30 home visits of adults and children claiming DLA, selected at random. Some 1,135 people were visited. The report showed that 73 per cent of cases were correct, 1.5 per cent "confirmed fraud", and 10.7 per cent showed "suspected fraud levels 3 and 4".

  5.3 The definitions of fraud used in the research are highly problematic. They were used because the DSS fraud section wanted consistency across all the benefits under their investigation. They did not see the need to distinguish between, for example, a means-tested benefit like housing benefit and DLA. Yet the benefits are very different. In general claimants are well aware of the changes they need to report—increases in wages, change in level of rent, number of people in the household—in relation to something like housing benefit. The changes in circumstances which are relevant for DLA are far less well understood.

  5.4 "Suspected fraud" meant either that fraud was thought to exist but no proof was obtained or that the researcher was certain that fraud existed but had insufficient evidence to prove it.

  5.5 "Confirmed fraud" meant that the interviewer obtained confirmation from a third party, for example a neighbour. The quality of such third party evidence is highly questionable. It is unlikely that such sources have a proper knowledge of the claimant's disability, especially where the disability is little understood, variable or invisible. Even in the 1.5 per cent (18 people) of cases in which "confirmed fraud" was allegedly found there were no prosecutions.

  5.6 No cases of false identity were found. Nor were there any cases of people claiming on the basis of non-existent disabilities.

  5.7 The interviewers obtained a snapshot view of the claimant's condition in the context of an information gathering exercise. They did not have the expertise to adjudicate claims and their findings should be treated with caution.

  5.8 BIP was designed as a response to fraud. A belief in widespread fraud meant attention was focused on detection and catching people out—hence the huge programme of home visits. This is an expensive operation and does nothing to secure the integrity of the benefit in the future since it is based on an assumption that people know the rules and are consciously breaking them.

  5.9 We believe this is a fundamental mistake. There are undoubtedly errors in the system. But we believe they are a result of poor decision making at first claim stage and a lack of understanding by claimants of the basis on which they have been awarded benefit and what changes in circumstances they need to report.

6. BIP—the current position

  6.1 Under BIP approximately 400,000 people receiving the higher rate mobility component together with either the higher or middle rate care component will be either visited at home or asked to complete a questionnaire. 40,615 cases have been examined to date, of these 36 cases (0.08 per cent) have been referred to the Benefit Fraud Investigation Service.

  6.2 One in five of those who had their benefit reduced have had the decision changed on review and benefit has been restored. Because of long delays with the Independent Tribunal Service only five cases have so far been through the appeals process.

  6.3 In numerous cases claimants have only discovered that their benefit has been stopped when they call to the Post Office or their bank. Notifications to cease payment appear to go out well before a letter is sent to the claimant notifying them of the decision. This is causing shock and distress and seems utterly disrespectful.

  6.4 A number of claimants are also receiving linked benefits like income support which they may lose if their DLA is removed. If DLA is re-instated on review or appeal it is unclear whether the other linked benefits can also be backdated. This urgently needs clarification. If backdating is not currently possible then a change in the law should be made. It cannot be right that someone who wrongly loses one benefit should be penalised by the irrecoverable loss of other benefits.

  6.5 Following pressure from disability organisations it was agreed that certain categories of claimant would be exempt from BIP. Yet in a written answer (House of Commons Hansard 13 February 1998 col 429) the Government admitted that they knew of 403 people who had been wrongly included and assessed under BIP.

Exemptions include paraplegics, tetraplegics, double amputees, people who are deaf and blind, those with severe mental impairment and people who were terminally ill when they first applied for benefit (special rules claims).

  6.6 Appendix 1[1] contains summaries of a variety of not untypical cases which have been brought to our attention. We believe these speak for themselves in detailing the level of incompetence and lack of expertise amongst BIP staff and the degree of hardship this is causing.

7. BIP—Suggestions for improvement in procedures

  7.1 Exemptions: In order to ensure that people who fall within the agreed exempt categories are correctly identified and not included in the project we recommend that covering letters sent to claimants either with a questionnaire or advising of a BIP visit should include a list of exempt categories. Claimants would be advised that certain categories of disabled people were exempt and asked to tick a box and return the form/letter if they believed they fell into one of the listed categories.

  7.2 In addition, we recommend that Government should consider expanding the categories of people who are exempt. This would avoid unnecessary intrusion into the lives of severely disabled people and would save administrative costs. Potential categories might include:

    (b)   people on DLA who are now over retirement age. The Government has said that it does not believe there are any problems with Attendance Allowance which is for people over retirement age. It would appear fair and sensible to treat all disabled people over retirement age in the same way.

    (c)   people who had had a series of short-term awards before being given a life award. In such cases it is highly unlikely that either a series of wrong decisions had been made or that the person's condition had improved.

    (d)   since 1996 all claimants who receive the higher rate mobility component have undergone a medical examination. The likelihood of this being wrong seems remote and this group should be excluded.

  7.3 In addition, we believe the DSS should analyse the results of BIP so far to see if there is a pattern to cases where benefit appears to have been wrongly awarded. When DLA was first introduced in 1992-93 the Benefits Agency was overwhelmed with new claims. It would not be surprising if this had resulted in poor decision-making by pressurised staff trying to cope with impossible work-loads. If the analysis does indicate a problem with claims dating from this period then BIP could focus on those and later claims could be excluded.

This might prove far more cost effective.

  7.4 We have had complaints from people who have felt put under pressure to sign the DLA form without having had time to read through it properly, at the end of an interview which may have lasted a couple of hours.

We would suggest that claimants are given the option of signing the form immediately or being given an envelope and returning it a few days later when they have had time to read it properly.

  7.5 Secretary of State for Social Security, Harriet Harman, recently announced (9 February 1998) that further evidence would be sought in all cases where benefit would otherwise be reduced on the evidence provided by the claimant alone. One of the sources of this additional evidence would be a claimant's GP.

  7.6 GPs are paid for completing forms sent by the Benefits Agency seeking information about a claimant's condition. Unfortunately, many GPs complete and return these forms without having seen the claimant for months. Even if the GP has seen the claimant recently it will have been in connection with their medical treatment—not to assess their care or mobility needs. We recommend that GPs should be required to see their patient specifically to assess their care and/or mobility needs for the purposes of providing evidence for the DLA claim.

  7.7 The recently announced safeguard (see 7.5) does nothing to protect those people who lost benefit before 9 February. We recommend that all cases where benefit was reduced on the evidence of the claimant alone before 9 February should be re-examined and subject to the safeguard.

  7.8 Statistics: The most recently published figures on BIP also included all renewal cases. This gave rise to inaccurate and misleading press reports of the level of incorrectness within the benefit. Disabled people have to submit renewal claims where they have been given a time limited award of benefit. The reason for giving a time limited award is an expectation that the person's condition is likely to change. A high proportion of renewal cases therefore result in a change in benefit entitlement. Combining these cases, where 41.7 per cent led to a decrease in award, with the BIP ones, where the corresponding figure was 11.3 per cent, led to widespread misreporting. Presenting the figures in this way is misleading. We feel that accurate information is vitally important and would ask that BIP figures are presented separately in future.

8. Other ways of safeguarding the integrity of the benefit

  8.1 Improvements in first tier decision making: More thorough collection of evidence to supplement that given by the claimant and better training of adjudication officers would improve decision making at first tier level. Getting it right from the start of a claim should be the number one priority for the Benefits Agency.

  8.2 Clearer information to the claimant. Many people do not fully understand the basis on which they have been awarded benefit. It is common for people to believe that a DLA award is directly linked to their diagnosis, for example that they have arthritis, angina or ME. Providing their diagnosis remains the same it does not occur to them that they may no longer be entitled to benefit, even though their needs may have changed. Because they continue to take medication for their condition and attend hospital or GP appointments they believe they are still entitled to benefit. In fact DLA is not given because someone has been diagnosed as having a particular condition but is linked to the severity of their disability and the existence of care or mobility needs.

  8.3 Where someone's condition does improve it is likely to do so very gradually over many months. It is difficult for someone to judge at what point they need to tell the Benefits Agency that their needs have changed.

  8.4 We would suggest that the letter which accompanies the initial award of DLA should spell out clearly the basis on which the award has been made. For example "You have been awarded the middle rate care component of DLA because you need help throughout the day with bathing, toiletting and getting dressed . . . "

  8.5 Regular reminders. We recommend that follow-up letters are sent, perhaps annually, reminding the claimant of the basis for their DLA award and asking if their needs are still the same. This would act as a prompt for people whose condition had improved gradually as it would remind them of what their needs had been 12 or 18 months earlier. It would also be a way of picking up people whose condition had deteriorated and whose needs had increased.

9. Conclusion

  9.1 DLA is a cost effective and extremely valuable benefit which helps offset the extra costs of disability and promotes independence. The research which was used to justify BIP is fundamentally flawed. BIP has been the cause of enormous fear amongst disabled people—whether or not they are likely to be directly affected. It has resulted in great hardship for those severely disabled people who wrongly lost their benefit. It is not resulting in findings of fraud and we believe there are better ways of securing the integrity of the benefit. In its current form BIP should be dropped.

17 March 1998


1   See memorandum on pp. 30-31. Back


 
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