I have written to the Secretaries of State for Health and Local Government with a very simple question: why do parents of children with severe disabilities get charged for getting their child's needs met while those who have more simple and inexpensive needs get stuff free?

I have not yet received even an acknowledgement of my letter.

I have been invited to speak at Scope's National Conference in Blackpool on 5th November on the topic of "barriers". Well here's one right here that should be sorted. I am very happy for people to take up the issue.

My letter to Mr Dobson and Mr Prescott is reproduced below.

20 August 1999

dear Mr Dobson and Mr Prescott

I am unsure if it is your departments who have responsibility for the policy I wish to see changed. I would appreciate you both noting and responding to the contents of this letter and also raising the matters with whoever is appropriate in order to effect a more sensible way of going along.

What requires change? The totally appalling cost of a child's disability to the parents if they should chose (as mine have done) to adhere to current thinking and rear me at home instead of in a residential institution.

There is, as I understand it, embodied within the Children's Act a notion that services should be provided to promote and make possible the upbringing of children "in need" (which includes those like myself with a serious disability) within their families. The special educational needs laws are designed to ensure that a child like myself has their needs met, and wherever possible within a mainstream setting, and there is a duty upon Social Services departments to ensure that if a residential place is requested by parents, it is not because of a lack of care support outside school hours. The present government's policy is towards strengthening the free National Health Service, promoting inclusion policies in the field of education, and introducing stronger anti-discriminatory legislation and the setting up of a Disability Rights Commission.

It is therefore totally anachronistic that the more severe a disability, the more the parents of a child are expected to pay in order to bring about a situation where they may receive a package of physical support for their child delivered by Social Services. I am talking about the cost of necessary equipment. Since you may be unaware of how the system works in practice, I shall give a brief outline of my own case, from which I hope you will see why I am writing to you with some indignation.

Despite all my parents' hard work and efforts, I am living in a home environment where I have no access to a loo, a wash basin, a bath or a shower. I have no lift and no hoists. A recent Health & Safety inspection carried out for Social Services by an independent company concluded "there is a high risk of injury to both carers and client through the manoeuvres that are currently being undertaken".

We have been clients of the Occupational Therapy Bureau for 7 years. Because I am very severely disabled, and unusually so also, simple off-the-peg equipment such as mobile hoists or portable up-down bath aids have been assessed as unsuitable for my use. These items of equipment would have been supplied free of charge. What I am assessed as needing is equipment that is not free, equipment which by virtue of it having to be fixed, eg through-the-floor wheelchair lift, and ceiling hoists, and enough hugenesses of space compared with a normal person for me and my carers to access said equipment in eg a bathroom, is, I repeat, not free. My greater need necessitates my parents being means tested. I think this not equitable.

The result of the first test showed that they should contribute �34,000 before any grant would be forthcoming. This represents an entire year's salary and would quite impossibly mean that my 50 year old father would have to take out a huge new additional mortgage to cover this amount. A second means test was administered (this time by the OT Bureau) in order to access a different pot of money so that something might really happen. This determined that my parents should fork out �7,000, a still considerable sum. There then ensued years (and I mean years) of the OT Bureau assessing what to do.

I complained to the Ombudsman that there was unnecessary delay but after looking into the matter quite thoroughly, he concluded that 5 years had been reasonably spent and that there had been no maladministration although I still had no access to the most basic of facilities. When KCC's OT Bureau finally arrived at a costed plan (for a side extension on our house), it went to committee for funding, and was turned down. The costs were around �52,000. They now say that there is no point in pursuing that plan and they will have to come up with another, as yet unspecified.

They will not do things piece-meal because of the means-testing. For example, it was agreed many years ago that there should be a track and hoist in my bedroom to make it easier for carers to get me up out of bed, but the OT Bureau will not progress this single item. They instead insist on a once-and-for-all complete solution to all my needs. Everything has to be done at once. I continue to go without the provision of equipment that would prevent injury and illness. My mother has twice very alarmingly suffered bouts of clinical exhaustion lasting 3 months a-piece, and just as alarmingly now my father is under investigation at the hospital (outpatients) for a heart complaint and a thyroid complaint.

My mother has suggested that a spare bedroom be converted to provide a bigger bathroom and that a small extension housing only the wheelchair lift, which cannot be accommodated within the house because of roof structures, be built. This seems to me a very ungreedy plan but we cannot even apply for funding without the approval of the OT Bureau who have hitherto refused to adapt our existing premises.

Now the point is not about the merits or otherwise of individual plans. The point is that neither I nor my parents have control over what is happening to us and are not in a position where we feel the slightest bit supported. Everything is a battle and not a right. We have been told to go around the means testing again because so much time has elapsed. More will obviously elapse before anything is done. My mother asked about timescales and was told that if everything went ahead straightaway (and it is not doing, since nothing has been decided upon) it would be, with a fair wind, probably at least 18 months before a wheelchair lift could be ready for use (if they went for the option of building just that), but that nothing can be decided until my parents have been through 2 more means tests.

It is all so ridiculous. I was born with a profound physical disability. My LEA has over 3 years ago issued a Statement of Special Educational Needs for me to be educated at home because no school can be found that will take me and that can accommodate my needs. I am at home all day every day (unless I am out - you will see from my enclosed cv that I am neither passive nor inactive). Now the care support I need is being withdrawn because of health risks. Until the house is adapted, I am dependent upon my parents, and they have to pay for the adaptations that are only necessary because I am such a complicated person. Why cannot the state provide what is required by those with severe disabilities as well as those with minor ones? My parents are caught in a horrid bind. If they want to have help so that they are not alone providing care for me, then they must spend money on health and safety equipment, which cannot strictly speaking be said to be absolutely necessary since noone minds if my parents care for me without said equipment.

So is it fair for me to be utterly dependent upon my parents? Is this how a disabled child should be living? It is not how my able-bodied brother lives. He moves around freely, is educated at state expense, has his braces sorted without us paying a penny, has friends around, and expects to become independent and go off to university. Why should there be such a difference between our lives? Is it not the job of the state to minimise and not accentuate differences?

I have not yet described my disability. It is not the sort that there is dispute over. I was born with an unknown problem that results in sufficiently severe problems to be described by my consultant paediatrician as a type of locked-in syndrome. Which means? I cannot call out in pain or for help although I feel pain normally and will go into shock if it is not alleviated. I cannot speak. I cannot change my position, let alone roll, crawl, stand, walk etc. Nor can I use my hands for useful voluntary independent movement (gesture or manipulating things). In other words, I require complete care. I have a multitude of chaotic movements and retained infantile reflexes. I have epilepsy uncontrollable by drugs. I have been judged as needing twice daily catheterisation. I have a hole in my heart that is symptomless. I have a thirst and temperature regulation problem probably caused by a malfunction in my hypothalamus. I have suffered clinical depressions because of my situation. I am not weird though, I can assure you, I am not weird to look at or bed-bound - see cv where the enclosed photos should dispel doubts in your mind on both fronts, and I hope cause you to wish to respond personally and effectively.

I am 12 years old, but I do expect to be taken seriously and to receive a proper answer to my question. Why do parents of severely disabled children have to pay for necessary equipment when the needs of the less severely disabled are met free of charge? Do you not perceive a disproportionate burden falling on already over-burdened parents?

My parents are not mean bastards but dedicated worthy and hard-working people. My mother has gone without a career to look after me, because my individuality foxes so many agencies. They have spent money on a multitude of things to ensure I am nicely brought up at home - a path around the garden, level access from the road and driveway, an adapted day-van. I cost a lot all the time - more heating, more laundry, more diesel, things that are supposed to be covered by the DLA, but there is the huge physical and emotional cost to them also - eg my mother gets up at night to turn me or to deal with my nightmares.

What do I have nightmares about? The same as provokes heart-stopping fear by daylight and rages that are perforce because of disability rages merely of my imagination, but are uncomfortably violent and singularly graphic acts of brutality upon the bureaucrats who have upon occasion threatened to take me from my home and put me into a residential setting against the wishes of myself and my parents.

The barriers to community living must come down, sirs, or people will continue to see it as appropriate to scare a vulnerable child instead of supporting her. Mainstream life is not at all the easy option. It is crazily difficult but it is where I must be for my sanity. People like me need all the help we can get. Quality of life may not be measurable but there should be no disputing that a bright child disadvantaged by a physical disability should be situated within mainstream society and encouraged to feel that she is valued and has a productive role to play, is not a burden, is not a nuisance, is not objectified or marginalised. I may sound mad but I am told that I am an inspiration to people. I am not content with such a role, I want to be more than my disability but it's a darn sight better than being an object of pity. I just need to feel that society is not just paying lip service to certain ideas but is ensuring that they are a reality.

I hope to get a reply soon to my question : why should parents of a severely disabled child have to pay for stuffs when parents of children with mild disabilities do not? I shall hassle you if I have not heard from you within 2 working weeks. I do not like the lengthy timescales that local and national government seem to find normal.

With best wishes

Yours sincerely

encl: cv

Frank Dobson

Secretary of State

Department of Health

Richmond House

79 Whitehall

London W1A 2NS

John Prescott

Secretary of State

DETR

Eland House

Bressenden Place

London SW1E 5DU

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