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To Eveyone
I am desperately in need of some urgent advice around my 'Independent
Living'. I am a Disabled Person in the U.K with Aspergers Syndrome,
Developmental Co-ordination Disorder/Dyspraxia, Dyslexia and have
difficulties with Mental Distress, in which has developed, due to me having
to cope with living with Aspergers Syndrome and other Specific Learning
Difficulties in a Society and Culture which discriminates against
individuals who are 'different'.
I will point out, that through my personal experiences I have developed my
own personal and political views. I am well aware, that my own values will
differ from many others and I have great respect for other people's views
and opinions. I believe within a democratic process each individual as a
Human Right to express their own views and opinions. We have to respect and
accept others personal and political values, even if they differ from 'our
own frame of reference'. I also believe that individuals have to take
responsibility for the own personal and political views. We have to take the
personal consequences of our own behaviour and expect to challenged when
within Society when some individuals use their power and control, through
their personal political,economic and material wealth to abuse other
individuals Human Rights.
Firstly, I will try and explain the background knowledge and history of my
case:-
It has taken many years to get a proper Specialist Health and Community Care
Assessment. I was not aware, that I had been diagnosed with 'Clumsy Child
Syndrome' in 1968 (aged 5.6 years old) and it was not until in 1995 (aged
33years old), that I accessed my medical records through my G.P. I came
aware for the first time I had been diagnosed with 'Clumsy Child Syndrome'.
Since then I have done research and I came across the Dyspraxia Foundation
in the U.K. Through this Charity I found out that the preferred term used in
the U.K. for 'Clumsy Child Syndrome', is 'Dyspraxia'. Since then, I have
co-foundered with others the 'Adults with Dyspraxia Support Group', in the
U.K.
It was around 1995, I had suffered a stress burnout and developed mental
distress with doing too much work and studying at University. Due to my
impairments I had been trying to prove my self to Employers and others.
Throughout the 1980's/90's I had been personally exploited on many of the
Thatcherite 'slave-labour' £10 a week 'non-existence-training' schemes.
These schemes were a waste and were used to exploit the unemployed and
massage the unemployment figures. They were also used as a social control
mechanism as forced-labour camps (like the Victorian workhouses).
Since leaving school (officially) I have had many different jobs and been
on various Government funded training schemes and colleges. I have always
been a problem for the 'System' and I have had great problems fitting in
anywhere. I was once told by my old careers officer, that they don't know
where to put me. Since childhood I always knew I was different from other
children and I struggled within groups. I experienced childhood bullying
from teachers and childhood peers. As I have mentioned it was not until
1995, aged 33 years old, I had an explanation for the reasons I had been
struggling throughout my lifecourse. We judge people by their behaviour, but
we find it very difficult as a Society when we can't easily categorise and
label an individual and put them in a box. I will say this is what it feels
like living with Aspergers Syndrome, Developmental Co-ordination
Disorder/Dyspraxia, Dyslexia and Mental Distress. It is has we struggle
within our culture with empathising with individuals who are 'Different'
I believe that many employers took advantage of these schemes as
cheap-labour and saw an opportunity to exploit me and other individuals and
maximise their own profits within a free market. This had been supported
through social policies by the then Conservative Government. I had
experienced personal abuse on these schemes, but with being so young and
naive these employers took advantage of my youth.
I remember working many hours for my dole plus £10 a week 'training
allowance' ( "I say 'training' in the looses terms").
I was also working, within Youth and Community work on a voluntary basis, in
which I also worked many unpaid hours. Also, I was attending University in
studying a part-time Diploma in Community and Youth Work. As I said I was
trying to prove myself to the world, but was having great problems with my
impairments. I was always getting into arguments and conflict with my
Employers, because I would voice my opinions around injustice and
discrimination, in which was/is very personal..
I also had been part of the 1980's riots and 'miners' demonstration, in
which was an up rising by the underclass and working class people against
the oppression of 'minority groups'. It was Thatcher's successful attempt to
abolish 'Unions' in the U.K. and open up the free-market to exploit the
labour force and destroy industry in the U.K.
This also allowed the Government to access the capitalist free-market-forces
to move into less developed Third World Countries and import cheap goods
into the U.K. It is a way of using a Globalized economy to 'exploit' the
labour-force of
individuals in these poor less developed countries, but also in some of the
more western developed countries as well.
We also have seen the collapse of 'Communism' which has allowed 'Capitalism'
to have the free reign within a Globalized economy around the world. The
collapse of 'Communism' and the fall of the 'Iron-Curtain' as opened up the
world for people to be exploited by these 'Capitalist', in which allows them
to increase their profits and personal wealth. As I said, due to my
'direct-action' against my own and others oppression I got myself a Police
criminal record for 'public order' offences against the 'state'
I believe I was using these demonstrations as a transference of my own inner
frustrations and anger in a Society where I was being socially-excluded. Due
to my own personal abuse throughout my lifecourse I displaced my emotions
through a group of young men were we had shared experiences of feeling
oppressed. This expression which was a physical and emotional response
towards the feelings of this oppression. I attached myself to the 1980's
'football hooliganism', sub-culture.
On retrospect I believe, that, it was an expression against the 'Power and
Control' of a Government who where creating an Society where many young men
had lost their personal 'identities', through being unemployed and not
having ontological security. I myself felt some sense of 'Power' in being
part of this hooligan culture. I felt for the first time in my life I had an
'identity' and this felt powerful. There was a strong sense of belonging and
the group dynamics had a powerful force. I got a great buzz, every Saturday,
in giving the Police the run around. It was a mind game between ourselves
and the Police. It is so easy to judge, but if, as an individual, you are
aware you are different from others, due to your impairments or that you are
'neurologically-different' you experience prejudice and discrimination.
I remember my childhood abuse an these memories are still fresh in my mind;
the intense anxiety and anger had to be displaced somewhere. We do need
understand that there are socio-economic and socio-psychological reasons why
some young men, as in my case end up feeling socially-excluded. I will point
out, that I don't condone any use of violence against any individual or
property, but I am not too narrow minded to understand that within any
culture Human Nature is very complex and there are no easy explanations in
understanding an individuals behavioural and emotional reactions to feeling
socially-excluded within Society.
.
It was in the early 1990's that I did manage to get through an interview
panel with the Youth Service and offered paid employment, but I was never
allowed to start in this post, due to my criminal record for minor public
order offences. I challenged senior management about their decision, in
which was very strange, because I had already been working for 4 years, as a
voluntary Youth Worker and assistant teacher within my local authority and
had been police checked.
This challenging really took its toll on my personal physical and mental
health. I was suffering with too much stress, especially as also I was
working voluntary for the Citizens Advice Bureau, in which was a very
stressful job. I was also trying to prove myself in the sporting world and I
would train many hours in the fitness gym and do long distance road running.
I also was coaching children football around local schools. I had been on a
Government training scheme (another one) at a professional football club for
a year, but stayed on in a unpaid voluntary capacity.
Again, I tried to prove myself in the world, but due to my physical
impairments I was having great problems and I could never get to the
required standards to gain full -time paid employment. I had gained many
sporting qualifications at college, but it was my physical impairment which
was a barrier in me being discriminated in the sporting world. I would push
myself and train too hard to try and improve my sporting physical abilities;
this became a personal obsession in trying to prove myself to others. This
had a great impact on my physical and mental health and I suffered deep
depression.
It was in about 1992 (aged 30 years old) my past had finally taken its toll
and was effecting my physical and mental wellbeing. I was totally burnout,
both physically and mentally, due to my impairments I wanted desperately to
be accepted by others and not feel an 'outsider'. I was feeling
socially-excluded
and wanted to feel an 'insider'.
I will say at this time I was also having problems with drinking and
gambling on fruit machines. This was my on personal way of coping with my
intense feelings of anger. I also had not dealt with my childhood
experiences of being abused, especially in my teens while in care in a
adolescent unit. I had lost my father who had died when I was 13 years old.
I had never been able to grief as a child. After my fathers death I could
not cope with senior school so I was put into care and they used drugs to
control my feelings at an emotional and behavioural level. I was physically,
emotionally and sexual abused in the care system, by these 'Professionals'
and the other children within this unit. They abused me by using these drugs
and straight jackets to control a 14 to 17 year old teenager.
My physical and mental health breakdown cost me my relationship with my
girlfriend and I had to try and get support from somewhere. I was 32 years
old and living with my mother and stepfather, but they were unable to cope.
Also, they were moving from the area and getting a smaller house. I had to
try and get a flat through the support of my Local Council. I had been on
the housing list for 16 years, but they refused to give me accommodation. I
was on the verge of becoming homeless so I had to get the support of Social
Services and Health Care Professionals to support my request for a flat.
It was at this point I went for Counselling at a local drugs Charity. I
have now been seeing my Counsellor for 1 hour a week for over 4 years. If it
wasn't for this person I don't know how I would have survived. This person
has been a great help and supported me through my own emotional distress and
supported with me in trying in overcoming the barriers with the various
Departments, in getting me the specialist health, housing and social care
support, in which I require. Through therapy I have got some control on my
gambling; it has now been nearly 1 year 6 months since I have gambled on
fruit machines. I have also been able to get some control on my excessive
drinking; it is only usually a Saturday I drink socially, before and after
the football with my mates. I have to remember never to become too
complaisance and I could have a slip at any time and it is important I try
and keep some control, but at times this can very difficult and I get the
urge now and then. There are temptations every where you go nowadays,
especially in that you see these fruit machines in all different places
where you visit socially.
I will point out I had been getting support from the local Mental Health
Services Team. This was the first time I had this support, since I had left
the Adolescence Unit at the age of 17 years old. My family and I had not
been made aware that I had been diagnosed in 1968 with 'Clumsy Child
Syndrome' and while in the Adolescent Unit, the child Psychiatrist had
diagnosed me with 'Obsessive Compulsive Disorder'. This had been suppressed
in my medical records and it was not until as I have mentioned it was 1995,
I came aware of these childhood diagnosis. I did manage to get put into my
current flat and this is when my problems really started to arise.
I personally, had tried to get a Community Care Assessment, through my local
Social Services, but was refused and put in the lowest band, in which was
Band: 7.
I made many written and verbal complaints to my local Social Services,
Housing
Department and Health Authority. I also wrote to the Health Ombudsman,
through my local Community Health Council. It was decided by the Health
Ombudsman, that my
complaints had to dealt with through 'Local Resolution' with my G.P.
I also wrote to my local Councillor and MP for their support. After various
complaints I was re-assessed and surprisingly jumped from Band:7 to Band: 3.
I also went to the Social Services Independent Panel Review and the Panel
upheld my complaint and I agreed that my accommodation was 'unsuitable to
meet my Health and Social Care needs'. I will point out this was in August
1997.
In the interim my Mental Health was getting worse and this was effecting my
University studies. I had to suspend my studies 2 years running on my
BA(Hon) Social Work Course, due to the stress of not having appropriate
Educational, Health, Housing and Social Care. I did return to my studies in
the academic year 1998/1999, but I lost my place on the BA(Hon) Social Work
and was transferred over to a 3rd year BA(Hon Applied Social Sciences.
I will point out I had to try and understand new Social Science theoretical
concepts and ideas, in which was different to my practical based Social Work
course which was mostly around Social Work, Community Care, Children's
legislation. Again, my mental health started to be effected, due to the
stress in trying to complete my coursework, exams and dissertation. It was
then at end of Semester A, due to not getting my specialist educational
needs met; and also constant conflict and arguments with Social Services and
Housing Department and also Health Authority I had it withdraw and suspend
from my studies again.
I will point out at this time I was on the verge of suicide and
unfortunately in a impulsive rage I shouted and threatened Social Services,
that I would 'set fire to myself in my flat'. This was due to total
desperation of trying to get them to listen and understand and respond my
Social Health and Housing Care needs. I will point out, that my local Social
Services took me to Court and I was fined for the above offence, at the
Magistrates Court. I could not believe it, I was desperately 'crying out for
help' and they took me put me through the Criminal Justice System and I was
fined by the Magistrates Court. What are others thoughts and views?
Also, I will point out, that I had a Legal Advocate, but he was unable to
get me Legal Aid to take on my case. Also, I had also been refused
Disability Living Allowance at the Disability Appeals Tribunal. I tried to
get my Legal Advocate to take my D.LA. case to 'Judicial Review', but it
never happened for some reason. My current legal advocate and social
services have put in a new application for Disability Living Allowance. I
made this new claim in February 1999, but Social Services thought it would
be in my best interest I waited for the Specialist Health and Social Care
reports.
Due to my conflict with the local Health, Housing and Social Services and
my suicide
attempt. I then was assessed by the Local Specialist Therapy Team. A
Specialist Therapy Report was done by a Clinical Psychologist and Nurse;this
report enabled me at the end of 1998 for a Specialist Health and Social
Care Group to oversee my Health and Social Care, in which involves various
Professionals from Health and Social Services and my Counsellor from a
Voluntary Agency. It was from this group it was
established that I would need a specialist diagnosis and assessment, in
which I will point out, that, for years this it what I had been trying to
get through a referral from my G.P. He would not listen; and the local
Health Authority would not jointly commission the funding with my local
Social Services, who I will point out that for many years I had been asking
for this specialist report. I had also been told by 4 local Consultant
Psychiatrists and a local Clinical Psychologist and my G.P. that I did not
have 'Aspergers Syndrome'.
Through my Care Group, at last I did manage to get the funding, jointly
commissioned by my local Health and Social Services for a referral to Dr
Amanda Kirby, Dyscovery Centre, Cardiff, in July 1999. (Yes, 'Cardiff', I
had to travel all the way from East Yorkshire, England to Cardiff, Wales).
After all these years of conflict with my Health and Social Services I had
managed to get a Specialist Assessment, at the age of 37 years old from Dr
Amanda Kirby and an Occupational Therapist and Behavioural Optometrist, at
the Dyscovery Centre, Cardiff.
It was established through these assessments that I had 'Developmental
Co-ordination Disorder' (in which is the preferred medical term for
Dyspraxia), Dyslexia and elements of Aspergers Syndrome. Dr Kirby and her
team wrote various reports to be implemented at a local level, by my
Health,Social Services and the Housing Department. At last I thought thing
would start to happen. I also thought these reports would enable me to take
a case for negligence against my Health, Social Services and Housing. This
is under the NHS and Community Care Act 1990; and various other Community
care legislation, including the Chronically Sick and Disabled Person Act
1970, in them not meeting their statutory duties and responsibilities. It
had been over 4 years since I went to the door of Social Services and asked
for a Community Care Assessment. It disturbs me greatly and makes me feel
intense anger that I have had to go through the constant arguments and
conflict with various Professionals with Social Services, Health Authority
and Housing Department to get them to listen.
I have suffered extreme emotional pain in my battle with the above
departments in getting my health,social and housing care needs met. It has
also had a detrimental effect on me completing my BA(Hon) studies at the
University. Through my own
self-determination and the support of my Counsellor I have gone from being
refused Community Care Support, through the local authorities eligibility
criteria, in Band:7 (no support) via Band:3 to now Band:2 (regular daily
health and social care support).
I will point out at this time In had lost my legal advocate, due to him not
being able to get me funding through the legal aid system. I had to search
out another firm of Solicitors, (the 4th time) to take on my case. I did
manage to get another firm and it only took this Solicitor only 3 weeks to
get me application approved by the Legal Aid Board and get a legal aid
certificate to examine and collate evidence around my case. I find this very
strange when I had been refused on various occasions in the past. Is this
due to me now having these specialist reports from Dr Amanda Kirby and her
team and presenting specialist further clinical evidence?
I will point out, that I have been trying to live in my present flat for 5
years. In this time I has never been furnished and carpeted or decorated
except I have managed to beg some second-hand furniture from the local
Social Services; this was after the closure of a local Residential Care Home
for the Elderly. I have applied through the Social Fund for a Community care
Grant, but this was refused.
This takes me onto my next points, as I have mentioned above my present flat
has been assessed as being 'unsuitable to meet my health and social care
needs'. Only recently the Local authorities Housing Department have had to
accept a decision made through my legal advocate after an appeal to the
'Housing Sub-Committee'. I have presently over £2000, in rent arrears and I
had been refused a request for a move due to these rent arrears which I have
incurred. I won the appeal and I have been made a priority on medical
grounds to move to more suitable accommodation.
I will point out these rent arrears I have incurred has come about because I
am not entitled to full housing and council tax benefits. As a disabled
person I am presently in the receipt of long-term Incapacity Benefit. This
means I am not entitled to full housing and council tax benefits and have to
pay a partial amount towards my rent and council tax. On my current income I
am unable to meet these weekly amounts for my rent and council tax, but also
I have to pay full water rates which are too much, £205 per year, for a
single person in this present flat. I have been trying to get a water metre
installed, but I can't afford the amount the Water Authority require to
survey my property. It is ironic, that if I were on Income Support I would
receive full housing and council tax benefits. I have the problem of being 7
pence over the 'applicable amount'; this means that many other disabled
people and I have to try and live financially and cope on incapacity benefit
levels.
Also, I have applied for support for my health cost through a HC1. I have
been assessed in not get free prescriptions and I have to pay a small amount
towards my other health costs, including glasses and dentist charges, due to
me being over the Income Support 'applicable amount' levels, as in my case 7
pence.
I am also not entitled to apply for a Social Fund, Community Care Grant
and/or Budget Loan, due to me being in receipt of long-term Incapacity
Benefit. The eligibility criteria is that you have to be in receipt of
Income Support. The only application I can make is for a Crisis Loan. The
lack of basic furnishing, carpets, curtains and painting and decorating mean
I have lived with these conditions since I moved in and the state of my flat
makes me feel depressed and effects my mental health. I am living on
Incapacity Benefit of £80.80 weekly and they expect me to survive on this
measly amount. I have great problems in paying my rent, water, gas, electric
and telephone bills. I also have other debts which I am unable to pay. I
thought that Community Care grants were To help Disabled people settle in
the Community and allow individuals to have 'Independent Living' ? I also
thought it was supposed to protect people from being put into an
institutional residential care?
As I have mentioned my Social Services have put in another application on my
behalf for Disability Living Allowance. This claim was originally applied
for in February 1999. As I have mentioned it was suggested by Social
Services I send in my
application after my specialist health and social care assessment had been
carried out.
On returning from the Dyscovery Centre in July 1999, I then sent off my
Disability Living Allowances claim with supporting letters from Social
Services and the Specialist
reports carried out by Dr Amanda Kirby and her team. I have been now
informed through my legal advocate and Social Services, that the Benefits
Agency want to send a Benefits Agency Medical Practitioner (B.A.M's) to
visit me at my home. I find this very strange, especially when I have
submitted with Social Services and the Health Authority specialist jointly
commissioned reports by Dr Amanda Kirby. Is it that a B.A.M's have the power
to over-ride various specialist reports? What was the point in Social
Services and the Health Authority commissioning these reports and delaying
submitting them to the Benefits Agencies Disability Benefits Section, until
I was able to get
specialist medical evidence. I am still waiting to have a visit from this
B.A.M's. It is over two weeks since they informed my legal advocate and
myself they would have to re-arrange a cancelled appointment to a suitable
date and time for this G.P. to visit my home.
This takes me onto my plea for advice on the various issues which I have
covered in this letter. I am asking if anyone can advise me on my next
course of action? As you can read I have been down various avenues and come
up against solid brick-walls. I have tried to not leave any stone unturned,
but can anyone advise me if there are other stones which still need to be
turned over ?
On Friday, 21/1/2000, I had a meeting with my legal advocate and we
discussed my current problems. He informed me that there are no laws which
protect our statutory rights to not live in 'poverty'. He said, that, there
are millions of people in this Country in living in poverty and they can't
expect to get financial support for basic furnishings, carpets, curtains,
fridge's/freezers, cooker and also financial and practical support in
getting external and internal painting and decorating.
I replied, that this is a basic human right issue, but he did not want my
case to be seen as a 'social-justice' case for disabled people. I said,
that, all case-law should set a precedence in an indirect way around social
justice and human rights. He pointed out to me that within law the word
'reasonable' is used to justify the behaviour of the 'state' against an
individual.
He stated, that, it is 'not reasonable' for a disabled person to be treated
more favourably then any other of the millions of individuals living in
poverty. I stated to him that there are many individuals living in poverty,
due totem having impairments or specific learning difficulties. I said, that
there are many individual who are unable to access information, due to a
large number of the population in the U.K. unable to read and write and do
not know how to access advice and information around rights.
'Is Community Care and Independent Living a Human Rights issue'? Does
Community Care go beyond 'Bricks and Mortar' ? The Local Authority are only
legally responsible to make adaptations to a disabled persons property and
also provide the social care.
They are not legally responsible to provide financial and practical support
for exterior and interior painting and decorating and furnishing and
fittings, including essential items as in carpets, cookers,
fridge's/freezer's, curtains etc. How are then Disabled People, as in my
case able to have the right to 'Independent Living' in the Community?
In the United Kingdom poverty is seen as relative and there are others who
expect to live with the basic furnishings, carpets, curtains,
fridge's/freezers, cooker and also financial and practical support in
getting external and internal painting and decorating. In a postmodern
developed Country our Society expects to live in a comfortable 'home'
environment as a basic Human Right. Does not case-law establish precedence
to define what is means in our Society to be 'reasonable' ?
Through case-law is it not an indirect precedence in established
'social-justice' for disabled people. Don't we also need to protect disabled
people from discrimination and social exclusion?
I don't know how many people are aware, that on October 2nd,2000 will see
the
introduction of the Human Rights Act 1998, which incorporates the European
Convention of Human Rights, into British Law. Will this change anything in
protecting the
Civil and Human Rights of Disabled People, especially around Community Care
and Independent Living ?
At a recent Human Rights conference I attended, many of the Human Rights
Lawyers believe this 'Act' will make positive changes to the lives of
disabled people and will strengthen the current loopholes within the
Disability Discrimination Act and other legislation. It will force the hand
of the UK Government to give full Civil-Rights towards disabled people,
especially around Education and Health and Community Care. The
Articles are as follows:
Article 2: 'The Right to Life';
Article 3: 'Prohibition on torture, inhuman or degrading treatment;
Article 4: 'No slavery or forced labour';
Article 5 'Rights to liberty';
Article 6: 'Right to a fair trial';
Article 7: 'No punishment without law';
Article 8: 'Right to respect for private and family life, and home and
correspondence';
Article 9: 'Freedom of thought, conscience and religion';
Article 10: 'Freedom of expression';
Article 11: 'Freedom of assembly and association';
Article 12: 'Right to marry and found a family';
Article 14: 'No discrimination on grounds such as: Sex, race, colour,
language, religion, political or social origin, association with a national
minority, property, birth or other status (Disability is included) and
First protocol
(1) 'Right to property';
(2) 'Right to education'.
Does not this mean the following articles give others and I the right to
expect in a postmodern Society in the U.K. to be protected from living in
poverty ?
Also should the Government provide the financial and practical resources to
allow myself and others a comfortable home environment which for many is
taken for
granted ?
I then believe I should be provided with the basic furnishings, carpets,
curtains, fridge/freezer, cooker and also financial and practical support in
getting external and internal painting and decorating. The 'state' should
provide these basic items as a right for Independent Living for Disabled
people.
I have been informed by a Human Rights Lawyer, that the Welfare Benefit
Levels are far too low for Disabled People in the U.K. to enable disabled
people to live independently in the community. He states, that the
Government say through the various Disablity Welfare Benefits the are
providing the financial support in allowing Disabled People their Human
Rights to 'Independent Living'.
He also stated, that, the Local Autority should have to provide 'Direct
Payments Schemes, under Article 8: 'Right to respect for private and family
life, and home and
correspondence'.
He said, that if the U.K Government are seen as being 'reasonable' in
providing the financial support to Disabled People and it is difficult to
argue for Human Rights on 'economic grounds'.
I would expect over the years Disabled People in the Uniteed Kingdom will
take case under the Human Rights Act 1998, under the following:
Article 2: 'The Right to Life';
Article 8: 'Right to respect for private and family life, and home and
correspondence'
Article 14: 'No discrimination on grounds such as: Sex, race, colour,
language, religion, political or social origin, association with a national
minority, property, birth or other status (Disability is included) and
First protocol
(1) 'Right to property';
As I have said I would appreciate any advice or comments on the various
issues I have covered within this letter. I can be contacted personally at
[log in to unmask]
I hope to hear from you soon
Yours sincerely
Colin Revell
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