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:
(a) people who have become terminally ill since applying
for benefit. This group could be identified through the covering
letter mentioned above.
(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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