Examination of witnesses (Questions 40 - 59)
WEDNESDAY 18 MARCH 1998
PROFESSOR RODNEY
GRAHAME, MISS
SUSAN KNIBBS,
MRS NICOLE
DAVOUD and DR
JOHN HUNTER
40. How would we compare, for example, someone who was
blind or deaf with someone who, because of a physical handicap,
was largely confined to a wheelchair? Is it possible to talk about
one as a higher degree or a lower degree?
(Professor Grahame) No. It is different and it
is a question of what kind of help is needed. Is it supervision,
is it guidance or is it help with the attention of another person
in connection with bodily functions? It is actually qualitatively
different.
(Dr Hunter) The research which underpinned the
1992 Act was the study by the OPCS in the late 1980s.
That was based on the development of a severity scale of disability
based on the concept of the international classification of impairments,
disabilities and handicaps. It addressed this very issue of how
to compare peaches and pears. They came up with a series of different
dimensions of disability, one of which was related to intellectual
function and psychological function but most of them were physically
orientated types of functions. They came up with a total score
for that. It is actually a very valid scale from a scientific
point of view. The unfortunate thing is that DLA, as the Act has
been applied, does not actually match up with the gradings of
the OPCS disability study but that is an academic point.
Mr Leigh
41. Clearly something is very seriously wrong because
as our specialist adviser told us this morning, when this was
set up in 1992 about one million people were claiming DLA. Now
it has gone up to 1.9 million and the DSS expects the number of
DLA recipients to rise to 2.2 million by the year 2000. The public
do not know about this issue, do not care unless they are disabled,
and quite rightly this debate is driven by people who are disabled,
but something is seriously wrong. If I may play the role of the
over-zealous Treasury official, because somebody does, unless
we get a grip on this the Treasury are quite rightly going to
come down on us like a ton of bricks. What we should be trying
to do surely is to concentrate help on those who really need it.
The whole tenor of the debate we have had so far is that the form
is too long, it is too difficult, the questions are too intrusive
and all the rest of it. I do not claim to be any kind of expert
on this but I am just thinking of the public as a whole. I am
also trying to concentrate help where it is really needed. It
seems to me that actually something is very seriously wrong. What
is it? Is it the form? Is it the Adjudication Officers? Your litany
you refer to in paragraph 2.2 is very disturbing: higher than
planned take-up, significant rate of incorrect payments, Adjudication
Officer practices, insufficient understanding of the disabling
condition, inadequate corroboration, failure to request adequate
medical evidence. Something is going very badly wrong.
What is it?
(Professor Grahame) As you said, we have set out
in paragraph 2.2 the various factors we thought would be operating
and these need to be addressed. There is no one problem here;
there is a series of problems.
What we have done in response to the Minister's request is to
set out our views on what they might be.
42. What has been the most significant factor in the
growth in your view?
(Professor Grahame) It is multifactorial. They
have all played a part.
(Dr Hunter) I would agree with the interpretation
of the Social Security Advisory Committee that it is the growth
of life awards which is the particular reason which underpins
a lot of this forward planning. If I could say what we should
do, I would say you cannot make a decision without actually seeing
the person.
43. That is very good. I should like to ask about life
awards but I know another colleague wants to deal with that. It
seems an absurd practice to give these awards for life; something
is wrong there. What I cannot understand is that only around one
in five claimants is now medically examined. That is what our
specialist adviser told us this morning. To me that seems absurd.
I can understand this is presumably to save public money but we
are losing public money.
Why is this? Do you have a view on that?
(Professor Grahame) I was not involved in the
previous system.
(Mrs Davoud) We say in our report what the view
is, that we should have absolutely mandatory professional evidence
and even medical checkups. I absolutely agree with you on this.
Self-assessment is brilliant in concept but in reality it does
not work. I agree with Professor Grahame that it is multifactorial
but basically we are dealing with a benefit which is not tightly
enough designed. That is probably where it all starts. Because
it is not tightly enough designed and we do not exactly know who
is to be allowed DLA and who is not, it allows for commissioners
to come up with decisions which sometimes we just do not believe,
to be perfectly truthful, and it allows for a whole collection
of people to come into the periphery.
I am not going to lay myself wide open here by saying who should
and who should not. All I am saying is that it is vague enough
for a lot of things to happen which should not be happening and
I agree with you on that.
44. Is this down to the Adjudication Officer? Is it their
practices which have contributed to the increase in claims? Are
they not to be trusted? Are they insufficiently trained? Are they
just fighting a totally inadequate system? Are they not given
proper guidance? What is going wrong?
(Mrs Davoud) It is the law, it is the Adjudication
Officers not being able to understand fully what it all means,
inadequate training on their part, the form not requesting mandatory
professional advice, trying to assist the disabled person themselves
to understand and express their own needs which they sometimes
may not be able to give in full; never mind giving too much, they
are understating as well. It is a whole series of things which
are wrong. It is not a quick fix thing.
45. No; I understand that.
(Mrs Davoud) I wish I could tell you that is wrong,
do it, but it is not a quick fix, it is the whole system which
is flawed.
(Professor Grahame) The 1992 Act established the
Adjudication Officer as the central decision-making, in fact sole
decision-making person in relation to a claim. The actual authority
of the Adjudication Officer in an individual case is paramount,
in fact it is sacrosanct. Although there may be advice available,
which the Adjudication Officer will examine, in the final analysis
it is the Adjudication Officer who has total control and decisionmaking
over the claim. There is of course the review, there is the appeal
process but at the time the decision is made it is made by the
Adjudication Officer alone. That is his or her job.
(Dr Hunter) May I be provocative and say that
some of the blame lies with the parliamentary draftsmen and perhaps
even MPs? You define eligibility in terms of "virtually unable
to walk". That is like saying "How long is a piece of
string?". The legal regulations which you passed are couched
in terms of a series of alternatives.
46. One of the questions I was asked to ask you is whether
the problem is with the claim process itself or conditions of
entitlement. Really it seems to be problems with both aspects,
both the conditions of entitlement and the claim process. Some
of what you appear to be saying is that self-assessment does not
work. I would have thought that was fairly obvious.
How can you possibly self-assess in any walk of life but that
is what you are saying to sum up.
(Mrs Davoud) Yes, it is.
Ms Buck
47. We have quite clearly heard from you today, as well
as from your report, about how you regard life awards as being
one of the most serious of the underlying problems. You state
in your report, "Life awards should be the exception rather
than the rule" and "The duration of all awards should
assume that there may be advances in treatment". That is
a pretty powerful statement. We all know that this is unarguable
in some cases and obviously combination therapy in the case of
HIV and AIDS has been an extraordinarily dramatic illustration
of precisely your point. Could we just start by you telling us
a little bit about how you justify a statement which is that bold
and that sweeping with other illustrations of types of treatment,
types of disability where you do really feel that life awards
are being fairly liberally made available to people but where
there have been demonstrable advances in treatment and management?
(Professor Grahame) The classic example is joint
replacement, hip replacement for instance, which can dramatically
improve the mobility of an affected person and we find time and
time again that the possibility that this person may benefit from
such surgical treatment is not taken into consideration and they
may even be given a life award in that situation.
(Miss Knibbs) There is something else also and
that is the lack of rehabilitation facilities. Dr John Hunter
runs a rehabilitation department but I think I am right in saying
that there are not so many of those throughout the country.
(Dr Hunter) No, but forgetting about particular
empires, there are many things which can be done to help the disability
even if you cannot cure the underlying problem. Yes, an advance
in medical treatment which may deal with the underlying condition
like a replacement of an arthritic hip joint or improved drug
treatment for heart failure or whatever, but even when medical
treatment has been optimal, the person maybe left disabled. There
are still a lot of things you can do to mitigate the consequences
of the disability, that is the functional consequences, by the
provision of aids and equipment for example.
48. That is excellent and is a very good example.
What we have heard during the rest of this morning has been something
of a catalogue of disasters in the whole assessment procedure,
in the role of Adjudication Officers, they do not use the Handbook,
they are not very expert. What you are now asking is for people
to self-assess/have adjudications made on their assessment, not
just in the context of the person's disability but in the whole
wider context of an assessment of how they might be treated, when
they might be treated, what adaptations might be available to
them, what the local authority is going to provide for them, when
they are going to get an occupational therapist. Sometimes the
cumulative effect of waiting for joint replacement or waiting
for an OT assessment for an aid could be years and years and years.
How are we actually going to square that particular circle?
(Professor Grahame) These are all very relevant
aspects which need to be addressed and although it is outside
our remit, we do talk about the lack of facilities for rehabilitation
and even for medical treatment and how this can impinge on the
frequency and severity of disability and that many of these conditions
and problems are entirely rectifiable. We have to press on a broader
front than just the ones we have been considering. To take up
the point from Dr Hunter about the provisions of aids and appliances,
this is very much in the study we have been referring to earlier.
We found that as we went through these cases there were large
numbers of people who were not taking advantage of the availability
or the potential availability of all sorts of equipment and aids
which would in fact not only make their life a lot easier but
would perhaps make their reliance on benefit less urgent. In other
words, if there is a specific care need or mobility need which
can be addressed and corrected by the relatively simple provision
of a wheelchair or some kitchen aids or something like that, then
that might actually for that person render them independent of
the need for care from another person and therefore may obviate
the degree of need for the provision of benefit.
49. What we are saying is we need an holistic or inter-agency
assessment and not a benefit assessment.
(Dr Hunter) That is right.
(Professor Grahame) Indeed, and we do make that
point.
50. That is wonderful but the chances of getting there
... It seems to me you really are asking for all our Christmases
and birthdays to come together.
(Dr Hunter) We do actually suggest one middle
route forward, one step in that direction. That was the idea that
if an award is made for a particular purpose then perhaps some
of the money ought to be hypothecated for the purpose for which
the award was made. The person might be pointed in the direction
of getting aids or equipment or something like that, purchased
or leased, through the benefit as an examply of something for
parliamentarians to consider, the balance between the role of
the individual versus the role of the local authorities and the
health service.
51. That is an interesting point. I may be being a little
obscure but it does seem to me that there is a slight conflict
between saying that awards should bear in mind capacity for aids
and adaptations and other potential ways of improving somebody's
life, and saying that those awards should be considered from how
they exist outside benefits. Should it not be the case that in
fact it is precisely through the awards of benefit that people
can purchase in some of the aids and adaptations and assistance
which would reach that end? It seems to me there might be an inconsistency
there.
(Dr Hunter) Yes.
(Professor Grahame) That is exactly what we are
saying. In fact we go further and say that since some of the help
for disabled people comes from within the health service, some
comes from local authorities and some comes from the DSS in terms
of benefits, we feel that there is scope here for much more cohesion
and if not integration at least some communication in respect
of individuals so that their needs can be assessed and provided
for not piecemeal but in some sort of ordered fashion.
52. Taking your example of someone perhaps with arthritis
for whom a joint replacement would be desirable and potentially
liberating from the need for benefit, how would you make a decision
in that case as to what duration of award would be appropriate?
(Professor Grahame) Certainly one would make a
recommendation - we do not make recommendations but one would
anticipate - that in that case a short-term award would be appropriate.
53. What do you mean by short term?
(Professor Grahame) It depends on the individual
case. If for instance it is already stated on the claim pack or
we had information that an operation was going to take place at
a certain time then we could anticipate that having the operation,
getting over the operation, getting back into a normal swing of
life would take X months or in fact maybe a bit longer than that,
but it would be possible to make an award that was appropriate
to the condition. That is why we were so upset by the life awards
because it seemed that life awards were out of place in that situation
where there was a reasonable estimate of time when it would no
longer be required. The onus is on the applicant to inform the
DSS when their situation has changed and that does not always
happen.
54. When should life awards be given?
(Miss Knibbs) I wonder whether they ever should
in fact. One would always hope for improvements. It seems almost
to damn somebody. You are never going to get better so you may
as well get used to being an invalid.
(Mrs Davoud) Susan preempted what I was going
to say. I suffer from multiple sclerosis and the worst thing I
remember was in the early 1970s when people told me that that
was more or less it, my life was finished, take a wheelchair -
I was walking at the time - and that is it. As a young person
if you are suffering from a condition like that, to be given something
for life is the kiss of death. I know we are not in the business
here of talking psychology, we are in the business of money and
limited resources and more disabled. But some of the psychological
needs of people with disabilities, not just their care and mobility
needs, also need to be taken into consideration. If I am 30 years
old and you are giving me a life award you are killing me because
you are telling me there is no hope whatever.
Mr Roy
55. Is there not a case as well that if the life award
is given that is also a comfort to some people as well? People
who are not given a life award think that they are going to have
to go through this with the form in a couple of months' time or
a year's time again. Is that not the case that there really is
another side to your viewpoint?
(Mrs Davoud) There is another side to that.
Nothing is ever black and white. At the end of the day it depends.
Being disabled myself, having filled in forms, having sworn at
the fact that I had to write that blasted form time and time again,
I know what you are getting at. At the same time I say to myself
that I am fighting for a lot of money. If I were applying for
a job, I would have to send my CV who knows how many times, I
would have to give references who knows how many times and it
does not mean that I am going to get that job. At the end of the
day, if one can be a little bit more pragmatic about it, a lot
of money is in the balance here. One has to make some effort to
make sure that one gets it and one has to give the reference,
that is medical evidence, one has to show that one is worthy of
that award because it is not given as an act of Lady Bountiful.
We have to earn it and our way of earning it is showing that we
are ill.
(Dr Hunter) May I point out that in that study
we estimated that at least one quarter of the people had conditions
which were likely to be progressive, some of whom did not have
life awards. In that situation, having to re-submit yourself for
examination could actually end up with you receiving more. There
is a very serious problem of people not notifying people of deterioration
as well as improvement.
Mr Pond
56. Mrs Davoud is being very philosophical about this
and we all admire that but from the constituency postbag most
of us would say that many people are absolutely terrified, humiliated,
by a process which they often find undignified. That is not to
say that the process of reassessment is inappropriate. We have
to balance that as well. The point I wanted to make was in relation
to life awards, that at the beginning most people accept that
there was some administrative chaos for the first two or three
years with the introduction of DLA and there is an understanding
that literally thousands of cases were nodded through with insufficient
evidence at that time and perhaps with the tacit approval of the
then Secretary of State some would unkindly suggest. That does
create a problem now because those life awards which were awarded
at that time remain on the books and is there not a problem that
unless you focus particularly on that group of cases in that first
two or three years you are going to distort the overall perception
of the way that the system is operating now and maybe there are
some lessons which have been learned about the administration.
I do not think any of us would pretend it is ideal but surely
the focus should be on those life awards which were awarded in
the first two or three years of the setting up of the system.
Would you like to comment on that?
(Professor Grahame) I take your point but, as
you said, it is very difficult to change awards which have already
been made, What we were thinking of more was from the perspective
of what to do about it for the future. If we are going to recommend
an improved system, how we would design it and how we would avoid
making the same mistakes that were made at the beginning.
57. Just to clarify, I am not inviting you to go back
and take away awards from those people in the first two or three
years though it may be appropriate in some cases. What I am suggesting
is that in terms of your perception of what is happening with
the system it will be distorted by what happened in those first
two or three years.
(Professor Grahame) Indeed, but in fact we have
been doing studies throughout the whole of the five and a half
year period and we see this not just a problem of the early days.
(Dr Hunter) One of the things we asked the staff
to look at was to see whether there was any change according to
year of allocation as to whether we thought it was an inappropriate
award. We did not actually find that evidence. The problem has
become inherent in the system. What people do is compare themselves
to other people in their locality who receive the benefit. In
so doing, the yardstick they use is the people they know, not
some abstract concept of virtual inability to walk or frequent
or constant attention. If they are turned down, they write in
and say they know Jeanie Snooks in the next street who is far
less disabled than they are and she receives it, how can you turn
them down? The thermostat has been changed amongst claimants.
Chairman: The Committee is very interested in looking
perhaps at re-focusing the purpose of DLA.
We are interested in your idea of the All Living Test.
Ms Hewitt
58. You suggest in the recommendations in your report
that the benefit should be aimed at the most severely disabled
and help with the extra costs of severe disability. How would
you define severe disability? Would you for instance use that
scale of severity to which you referred earlier from the 1992
study? Could you give us examples again of the kind of conditions
that might well qualify for DLA at the moment, but would not fall
in with your proposed test of the most severe disabilities?
(Dr Hunter) As I understand it, the idea behind
this benefit was that it would include people who were in severity
scales eight, nine and ten. It goes from one to ten; ten is the
most severe grade of disability. It was to be targeted at the
people at that end of the spectrum. The evidence which was provided
in the ASD report which was published at the same time as ours
indicates that there are benefits being awarded right down into
grades one and two. I have broken my arm and I am grade three,
to put that in context.
There is a very steep taper. The people who are most likely to
be included at the severe end of the spectrum are people with
severe progressive neurological disorders such as multiple sclerosis
or severe rheumatoid arthritis, a musculo-skeletal condition.
The people who are least likely to come at that end of the spectrum
in an objective assessment of disability are the people with musculo-skeletal
conditions like backache, non-specific forms of osteoarthrosis
and so on. In the middle would come people with severe chronic
chest disease. Those are one or two examples.
59. Forgive me but I do not know that scale. I am going
to have to go and have a look at it. What kind of mental or intellectual
disabilities would be included within that eight, nine and ten
range?
(Dr Hunter) The people with what are normally
considered severe psychiatric conditions rather than people with
the more common psychological difficulties of coping. In other
words we are talking about schizophrenia and dementia and severe
manic depressive illness, that sort of thing.
(Professor Grahame) People with severe mental
impairment, learning difficulties.
(Dr Hunter) Or acquired learning difficulties
after head injury.
Ms Hewitt: May I ask one other question which is slightly
different? I was approached recently by a solicitor, highly qualified,
highly paid, mobility difficulties because of childhood polio.
The only thing that he needs in order to live and work independently
is his orange badge. Providing that he can drive door to door
he can do everything else. He tells me that in order to get his
orange badge he has to claim DLA. He has no desire to claim DLA, he is extremely well paid
and does not feel he is entitled to it. If that is the case, do
you think it should be the case?
| 
