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My wife and I are both physically disabled and unfortunately we have needed to rely
solely on state benefits all our adult lives. During 2003 the Department for Work and
Pensions began to investigate my right to continue to claim means-tested benefits
(Income Support, Housing Benefit and Council Tax Benefit) after they were informed
by the Inland Revenue that I had received interest on capital which had not been
declared to the DWP. On the 8th October, 03. an investigating officer from the
Counter Fraud Investigation Service paid us a pre-arranged visit during which I had to
sign a written statement agreeing to allow free access to all our personal finances. This
whole experience was, and still is, very unnerving as well as belittling. Between
October and January they went through all our finances with a 'fine-tooth comb'. We
felt as if we were being treated like criminals, which in my opinion was unwarranted. I
find the whole situation, both then and now, a dehumanising.
From 8th January, 2004. I have been in dispute with the Department for Work and
Pensions due to overpayment of the dreaded 'means-tested benefits'. This situation still
hasn't reached a satisfactory conclusion. Firstly, I would like to assure you that we are
not a couple "who could work but who presently languish on benefits doing nothing".
Neither do we work undercover and claim benefits illegally. In my opinion, the main
cause for this dispute is that from May 2000, I omitted to inform
them of a small inheritance left to me by my very close and loving sister. The reason
for this omission will I hope become clear by completely digesting the following
article.

Immediately at the outset of this investigation, all three of our above benefits were
stopped. Thus, until the meagre increases of April 04, my wife and I were left with
£117.50. per week to live on. This weekly amount comes from two Severe Disability
Allowances which we are both fully entitled to. Out of this sum we had to pay our
weekly Council Rent of £39.09 and the weekly Council Tax charges of £12.77, thus
leaving us with a balance of £65.64 to cover the rest of our total living costs. It can be
clearly seen from these figures that this amount is not enough to live on without using
our joint Disability Living Allowances, each at the middle rate, and quickly using up
our savings. The Disability Living Allowance is only meant to cover the extra costs of
being disabled, such as mobility, personal care and for purchasing some special
equipment, to help the individual with their disability, not to cover the usual costs of
daily living.
Before I give you the full details of the initial calculations and the outcome of this
investigation by the Department, you need to be aware that both my wife and I are
'severely disabled'. We have both been disabled from birth with cerebral palsy for some
fifty years and are permanently confined to wheelchairs. Four years after we married in
1974 we moved into a ground floor council flat and have lived here for the past
twenty-seven years. We are both well-educated and despite not having any formal
schooling until the age of twelve, some thirty years ago I managed to graduate in the
humanities, with an honours degree from the Open University. For me this was a great
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personal achievement and it gave me an immense sense of pride after seven years of
almost solid studying. Unfortunately however, it has not enabled me to become
financially independent in the 'work place'.
The result of the investigation, dated 6th January, 04. was a complete shock to me,
because of the amount the Department were demanding for overpayment of my
Income Support Benefit. I was also utterly astonished to read that they had taken their
figures back to April 1995, this is over five years before receiving any of my 'small
inheritance'. They were demanding the extraordinary sum of £28,439.42p. I was
completely devastated by this, not only because of the financial consequences, but also
the emotional and psychological ones. Ever since we have been married we have
always aimed at saving something from our weekly income for our future, but
unfortunately our entire income only come from the state benefit system.
Prior to May 2000 all our savings were incurred through good housekeeping and
skilful financial personal management. This is greatly helped through both of us being
on Disability Living Allowance. at the middle rate each, per week, which is not meant
to be means-tested and which is increased annually. We use it to help cover the cost of
any special equipment that we might need, such as adapted computers etc., special
transport for occasional social outings, such as visiting art galleries and museums in
London with friends, and to help with the cost of our annual holidays. We also manage
to save something for unforeseen domestic circumstances. Therefore I feel that we are
being penalised because of financial awareness.
We could have spent the entire inheritance in an inconsequential manner and
subsequently, at this moment in time, be better off. Instead of which, we decided to
save a little for our future. Another option was to purchase our Council property
which we have been living in for over twenty-six years. However, we decided not to
because we were very concerned about keeping up with the general maintenance, due
to our physical disability.
Our decision to move out of residential care and live in the community, must have
saved the country a considerable sum of money. I do really feel aggrieved with the
above situation, because if we were not so severely disabled we would be able to earn
our own living, and there would be no need for us to be claiming any means-tested
benefits. People who are able to work may have to pay extra income tax on their
inheritance, but they are not expected to lose over three quarters of their income.
Therefore, I strongly feel that severely disabled people who are lucky enough to come
into a small inheritance and who are unfortunate enough to have to be on means-tested
benefits can never improve their financial position. Through no fault of their own they
are being financially disadvantaged, if not discriminated against by the archaic rules of
the mean-tested benefit system.
On receiving the result of the investigation, I quickly asked the local Citizen Advice
Bureau to contact the Department and to ask for a review of their figures. The
Department's reply to this first review. dated 21st January, 04. was as follows: " We
have looked again at the facts and evidence we used to make our decision and looked
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again.....at the points you have raised. However, we have not changed
our original decision. This means that you still owe us £28,439.42 " After again
coming off my study's ceiling or being picked up from the carpet in pieces, I then asked
the CAB to formally appeal for me against this latest decision. Unfortunately however,
this request was not enacted upon and they did not inform me of this for some time.
Apparently the Bureau had passed the matter on to a local welfare rights organisation,
due to a lack of qualified staff of their own. It appears that the Bureau were advised by
them " to seek another review and reconsideration of the amount of overpayment,
rather than an outright appeal, as technically there is no case for an appeal."
Unfortunately, the Bureau seems to have let this second request for a review fall by the
wayside, as I heard nothing from them again on the matter. This may have been due to
lack of staff or they did not think that the dispute was worth pursuing. Whatever their
reasons, I feel rather let down by them, especially in the light of subsequent
developments. However, due to my own persistence, there has been further progress in
the matter.
First I must refer to the demand from the Local Council for overpayment of rent and
Council Tax. This demand arrived on the 16th January, 04 and in total came to the
staggering sum of £13,56.52. This sum was for overpayment of Housing Benefit and
Council Tax Benefit between 21st July, 1997 to 19th October, 2004. We were already
completely shattered by our worsening financial situation. Coping with the drop in our
weekly income and having these two debts hanging over me, was
beginning to effect me both physically and psychologically. Therefore, I passed the
matter on to the Citizen Advice Bureau, asking them to look into the figures and speak
to the District Council on my behalf. Unfortunately, this did not happen and I was so
devastated, both mentally and emotionally, that we decided to pay the above debt.
However remote in reality, we did not want to lose our home; the home we fought so
hard for, or have the Council's debt collector calling.
We had our first meeting with our MP on 13th February, and I showed him the two
letters from the Department. The first, was informing me of the result of their
investigation dated 6th January, 04. The second, was notifying me that my request for
a review of the figures had been completed and that the amount of overpayment
remained the same. He immediately wrote to the Department, "asking them to detail
the capital they believed I had at each point in the calculations". In their first reply to
him, the 9th March, they did not answer his "specific question as to how the precise
weekly amounts were calculated". He wrote to them again seeking this same
information. Between the end of March and the end of April I received at least two
more letters from the Department pertaining to the 'overpayment' debacle.
The first of these letters, dated 24th March 2004, came directly to me and said: "We
have looked again at all the facts and evidence we used to make our decision. As a
result we have changed the decision. We have decided that we have paid you
£18,420.00. too much Income Support, from 21 April 1995 to 09 October, 2003...."
This letter held no explanation for their change, which I later learnt was due to 'clerical
error' on their part. They did not even apologise to me personally for their error.
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Within this letter they enclosed a spreadsheet of over twelve pages in length, full of
their figures and dates for me to attempt to scrutinise. Unfortunately my degree
covered the humanities, not book-keeping. Therefore, the more I attempted to
understand their figures, the more mystified I became. Although I could not understand
their spreadsheet, I did realise that the amount had been reduced. However it was not
clear to me why it had taken three reviews to produce this reduction. The demand had
been reduced from £28,439.42p. to £18,420.00, purely because of a 'clerical error'
within the Department and was not due to any extenuating circumstances having been
fully considered.
A second letter from them referring to this reduction was sent to my MP. and this was
rather more enlightening. On the 29th April he wrote to me again, informing me that
the Department had finally sent him a detailed response to his previous enquiries and
"it would appear that they have reduced their claim of overpayments by £10.019.00."
He also enclosed copies of papers, including several pages of spreadsheets, which he
had received from them, for me to look through. He was also willing to talk to me
again further on the matter. Within these papers, they also enclosed a detailed letter
from the Department's Divisional Manager. In this letter she said she had asked "the
Decision Maker to look again at the overpayment calculation and decision, he has
discovered that, unfortunately, the original overpayment was vastly over-stated due to
a 'clerical error'. I am pleased to tell you that the revised figure is now £18,420.00p.
and would ask you convey my apologies to Mr. ...... for the unfortunate error". This
letter also went on to say that I had new appeal rights because of their 'mistake'. They
also attempted to explain how their calculations were arrived at and the regulations
they had to obey. "The capital held by ........ which caused the overpayment, as it was
not notified to the Department, and the affect the capital had on Mr. ..... Income
Support for each week of the overpayment period, which is a reduction in his
entitlement of £1.00. per week for each sum of £250,00 (or part of £250.00.) that he
had in excess of £3000. You will see for some weeks there was no overpayment as his
capital fell below £3000. You will also see that at the (end?) of each 90-day period the
capital figure is reduced by the reduction that would have been made to his Income
Support had the true facts been known. This is known as the Diminishing National
Capital rule designed to benefit the individual".

To expect 'severely' disabled people to adhere strictly to these rules, places them in a
'financial straight jacket' which must be totally wrong and unfair, if not rather obscene.
Especially as this is the twenty-first century and they are citizens of the fourth
wealthiest country in the world. It means we are prevented from saving for our future
because when we do, we are placed at a financial disadvantage. Currently everyone is
being urged to save an adequate income for their retirement and old age, in order to
cut down the pressure on the public purse, due to the ever increasing older generation.
This idea of saving for tomorrow is even more important for people who have a 'severe
disability', as they are unable to create their own income through working. Having the
right to save is also very important if they do not wish to become ever more second or
third class citizens financially speaking. The Government has recently implemented a
programme, entitled 'New Deal', which endeavours to assist the long term unemployed
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find a 'job' and get back into work. This project also aims at helping disabled people
into work which suits their physical abilities. It does have some success, but there will
always be some 'severely disabled people' who are unable to generate their own income
through working. This may be because of their lack of 'physical capabilities', ill health
or even poor energy levels due to their disability. Therefore, for people in this situation
to still have to claim means tested benefits in order to have a liveable income, should
be both financially and morally indefensible.

Most 'severely disabled people' who are in the position of not being able to be a part of
the 'labour market' and earning their own income, very often can feel personally and
socially inadequate. After completing my higher education, getting married and moving
to live in the community, I have always wished that I had been able to work. Not solely
to generate my own income, but also to increase my own psychological and social
sense of value. If I had been able to be part of the work force, I would have wanted to
be a professional artist, gone into the commercial art world or maybe been an art
teacher. In recent years I have been creating art work with the help of my specially
adapted computer and several graphic software packages. For some time I have been
trying to find a greetings card manufacturer who would purchase my designs, but alas
this endeavour has not yet born fruit.

This sense of inadequacy can be compounded by the attitude of some of the general
public, either by overt or covert means, against 'spongers or free loaders'. Quite often,
they are unable to really distinguish between the genuine 'sponger' and the genuine
claimant of state benefits. Then on top of this feeling of being socially inadequate,
'severely disabled people' have to go through the indignity of filling out a form of over
twenty pages in order to claim means tested benefits, which should be completely
unnecessary in our modern society.

This dispute with the DWP has definitely affected my health, both physically and
psychologically. The increased stress has caused a reoccurrence of my psoriasis and
irritable bowel syndrome. I also suffer from severe panic attacks, which are disrupting
my normal sleep patterns, making it much more difficult for me to cope with my
physical disability on a day-to-day basis. I have always suffered from these health
conditions, but recently they have increased considerably. Knowing that I may not be
able to keep my inheritance and use it in the way my sister would have wished, has I
think, contributed to my above mentioned health problems. It took me some time to
get over the death of my sister and I really do feel that it is appalling that I should have
to cope with the added financial and emotional burdens created by this dispute, as well
as the problems caused by a physical disability. By growing up together she greatly
helped me to prove to the so called 'professionals' that I was not a 'cabbage' and she
would be horrified to know the stress this dispute has put me under.

I received my inheritance between May and June 2000. Although the above reduction
appears both reasonable and pleasing at first sight, it is still extremely mystifying and
bewildering why these 'overpayments' are back dated to April 1995, which is five years
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prior to the receipt of my inheritance. Not to be able to gain financially, materially and
emotionally from the very last gift my sister left for us, due to the 'catch-all' means
tested benefits' regulations, is, in my opinion, both inconceivable and morally
indefensible. This 'inheritance' was left to us in order to improve our quality of life in
whatever way possible, not to be used for day-to-day living expenses. Not to lesson
the financial burden that our 'existence' places on the public purse. From the end of
March to the beginning of May 04. the Department continually requested that I repay
this 'debt' in total immediately, or at least in part, otherwise legal action would be
taken. One of the options they offered was for me to repay the sum of £19.58p. per
week from my Severe Disability Allowance book. However, this would mean that they
had complete control of the repayments, instead of me, which I decided was a
disadvantage. Therefore, in order to remain in full control of these repayments and to
continue disputing the matter, I decided to repay the sum of £1,018.16p. by cheque.
This is the annual amount they would be deducting from my Severe Disability
Allowance book, but on a weekly basis. The cheque was dated 19th May, 04. and was
cleared on 5th June, and with this cheque, I included a covering letter dated 17 May.
This letter explained to the Department, that by paying through instalments, it kept me
in partial control and allowed me more time to argue the case, at least for a further
reduction. I feel deeply that this whole affair should not just be looked at from a
numerical and financial perspective, though very important, but that the moral
dimensions of the matter should be seriously taken into account also.

Unfortunately, partly due to indecision on my next course of action, the first instalment
for repaying this supposed debt, was a few weeks late reaching the DWP. Hence, I
failed to ensure that it arrived before the end of April. Even so, especially after the
above mentioned instalment had been paid, I was rather surprised and annoyed, when
the Department, without any prior warning, withdrew my Severe Disability Allowance
book on the 20th May. 2004. This enabled them to make weekly deductions of
£19.58p. Being without this book meant that the only money we had coming in for
weekly expenses was my wife's £60.35p. SDA. To say that I was furious that we were
put in this position, due to another 'clerical error ' within the Department, is an
understatement. After making numerous frantic phone calls to the them, they finally
found my first repayment within their non-personalised system . Three weeks had
expired before they agreed to return my book, without any deductions having been
made.

Towards the latter half of May 04., at my request our MP visited me again. After we
looked at the Department's latest figures, he still thought they were incorrect and
decided to write to them again. I did not hear from him again until the end of August,
and unfortunately his latest query came to nothing and the amount of 'overpayments'
remained at £18,420.00p. The Department also informed him that once a claimant
receives any means-tested state benefit and saves it, it immediately becomes part of
their capital. This is, in my opinion, an absurd and ludicrous regulation and it is equally
ludicrous to expect claimants who are 'severely disabled' to comply with it. It means
that if a 'severely disabled' person is a claimant and has the mental and financial acumen
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to be prudent and save for their future, they are undoubtedly penalised and
discriminated against by the state benefit system for doing so. Disappointingly for me,
the MP only concentrated on the numerical aspect of this dispute. Although I am very
grateful for this, in my view, he could also have looked into the indefensible, immoral
and unethical situation which this dispute, and all its ramifications has caused. In my
view, the state benefit system is extremely outdated for people in our position. It is
really about time that honest members of our society who are 'severely disabled' and
unable to generate their own income within the labour market, be granted by the State
a fully adequate liveable income which is not means-tested at all. The Disability
Discrimination Act has gradually increased and improved disabled people's access to
amenities and services, however in itself this is not good enough if 'severely disabled
people' are continually to be treated as second class citizens economically.

Over the past year it seemed as if I had been robbed, not by an opportunistic thief but
by a democratic State of approximately £150.00p. per week, due to the loss of
means-tested benefits. Furthermore, I was also about to lose most of my small
inheritance as well. Therefore, still feeling absolutely aggrieved and annoyed by the
entire situation, my next move was to write my own formal appeal. This was sent off
before the middle of June to my local Job Centre and they redirected it to the Appeal
Service. I formulated the appeal around several of the points detailed above; in
particular concentrating on the financial, psychological and emotional stress that this
whole affair has created for us. I referred to the lack of professionalism within the
Department and the considerable clerical errors which seem to be increasing as time
unfolds. I also gave them my opinion of the outdated means-tested benefit system, and
its effect on 'severely disabled' people. Even though I was over two months late
submitting this formal appeal, fortunately, it was accepted by the Appeal Service. On
the 27th July I received a letter from the clerk, informing me that she had "asked the
person who made the decisions to prepare the documents for the tribunal...... When I
have a copy of the documents I will arrange for a tribunal to consider your appeal and
I will write to you again." I was extremely pleased and relieved with this latest
development, it seemed that finally I would have the opportunity for presenting my
views before an independent body.

On the 8th of October I received a letter from the Department's local officer which
informed me that the whole issue was being "looked at again". The letter said: "I am
not able to take any further action with your appeal as I have found there to be
discrepancies in the calculations. Once the overpayment calculation has been revised
and re-notified to you, you will have new appeal rights if you do not agree with the
decision....". I really could not comprehend why the entire matter had to go right back
to the very beginning for a re-calculation. Especially as the figure had already been
reduced in the previous March, due to an "error" in calculations. The original "error"
had resulted in a reduction from £28,439.42p. to £18,420.00p. This latest result has
increased my feeling of outrage at the financial and immoral injustice of this whole
situation, and has made me even more determined not to relinquish the ongoing battle.

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To my horror, when the Department's Debt Recovery section did re-notify me of the
new calculations, the amount had not decreased but increased to £22,030.95p., minus
my previous re-payment of £1,018.16p. In ten months the result of these calculations
has changed three times, due to 'clerical error', or members of staff re-interpreting the
regulations. This latest letter was enclosed with another schedule detailing the financial
breakdown and the deductions of 'overpayments'. However, for some unknown reason,
the layout of this particular financial schedule was completely different to that of
previous ones. The Department's incompetent administration, exposed by this dispute,
is now beginning to overshadow my initial reasons for disagreeing with these
'overpayments' and the financial situation I now find myself in. As a result of this latest
calculation and administrative blunder, I was informed that I had a right to make a new
appeal against this decision. What is mystifying to me, is that my first granted tribunal
hearing never materialised! It appears each time the figures are re-calculated, by a
different staff member within the Department a new figure and different interpretation
of the regulations comes into force.

In early December 04. I re-wrote and re-submitted my official appeal to the local
office. With this latest appeal was enclosed a letter from my general practitioner stating
how my health has been affected during this past year since my sister's death. Just
before Christmas my appeal was accepted for a tribunal hearing and now I am waiting
for further developments in this long-running financial and emotional saga. It is now
February and I am still waiting for the matter to be resolved justly and fairly. In my
view it is proving to be time-consuming, exhausting and a very humiliating period of
my life. It will be interesting to discover, when my appeal case finally reaches the
tribunal, whether or not the panel considers some of these above important points, as
well as taking into account the extra costs arising from having a 'severe disability'. In
my opinion, it is deplorable that 'severely disabled' people, in this day and age, are still
not even allowed to save for their old age, or gain financially from a small inheritance,
without losing some of their means-tested benefits. All human beings are subject to the
ageing process, which causes the body to deteriorate both physically and mentally. This
usually has an even greater debilitating impact on people who have been 'severely
disabled' from birth. Therefore, this financial position and debt should be seen as
neither morally or economically justifiable. 'Severely disabled' people do not deserve to
be financially discriminated against by an outdated state benefit system and it is high
time for urgent changes to be made.


Gareth John Cole.

Dated January 2005.