THE THWARTING OF DREAMS by HERO JOY NIGHTINGALE hojoy@rmplc.co.uk


I am a kid stepping out towards adulthood with a range of experiences tucked under my belt that give me a cynical disgruntled air I much despise in myself. If I could just change the mindset of several million people, life would be much easier and more fulfilling: you see, I am a crip child demanding a future that is not bleak and not boring.




Story Five: More Disabled, Less Help


If you have followed me through this week's ramblings, you will know that I am not a contented child but a much frustrated one. Happily my aspirations fit with government policy and government policy follows on from our signing up to the UN Convention on the Rights of the Child under the Tories so that the principles by which I lead my life should not be thought to be eccentric, ahead of my time, dependent upon party politics, etc There does however need to be a change in the way the systems are set up and I do need people to understand this. It is not just a question of changing mindsets and attitudes. At the moment the system is stacked against those of us with the most severe disabilities. I can't bear to think of what happens with adults when things get even more constraining so just for the mo I'll concentrate on what happens with children in their formative years.


The state is always reluctant to provide. There is no attempt to level the playing field, to give me what I need so that I may get on and lead my life as easily as possible, learn skills to become independent of my family and earn a living. There is no equality of opportunity for me, even though I was labelled exceptionally able in my mainstream school and could be heading somewhere.


I was born unable to make a voluntary sound, unable to gesture and attract help, unable to move myself in any way that is useful and purposive. I cannot so much as lift my head from supine or prone, or roll over, let alone sit myself up or crawl or stand or walk. I am not paralysed: I am full of chaotic movements, tics and reflexes. My hands claw impulsively at anything. I have developed epilepsy and two deformed toes as I have grown older and episodes of hyperventilating and lurching movements that much distress me. I am calmed by hands-on help from trained carers. I am enabled and empowered through control of my excessive movement externally given. Drug therapy is useless : it just sends me to sleep and suppresses the small movements by which I communicate my intelligence and my feelings. Even as a young child in therapy at one or two, my therapists could test my response to language and see the difference between enabling techniques for helping me to cope with my unique disability and leaving me to manage all by myself and live with frustration and chaos.


And yet applications for Attendance Allowance (now the Disability Living Allowance) were turned down. It was decided that I was less in danger at night-time than an ordinary able-bodied child, this despite the fact that my consultant told them I vomited often at night and that because I could not sit up or summon attention that this put me at risk. My MP was drawn in for the first time. The file got fatter and fatter as the correspondence went backwards and forwards. Eventually we got 3 years of back-dated payments and a slip of paper granting me highest rate DLA (as it then had become) until 2066.


I was 12 months late starting school because the authority hadn't organised me a school place when the other kids from my playgroup went to school. I have received no education for 8 years now and have had for nearly 5 of those years a Statement of Special Educational Needs naming education otherwise than at school. It is a legally binding document not worth the paper it is written on. It makes as its key objective establishing new enabling relationships with more than one enabler who can take responsibility for my care and communication so that I no longer have to be dependent upon my mother during normal school hours, in all settings including the Royal Academy of Music one day a week, and 6 hours of free time per week when I can be independent of my mother. However it merely set down on paper what had been talked about by the LEA and SS for years. It was nothing new. It's still not happened. It's still the document they should be implementing.


I have in October 2000 asked the Secretary of State to replace the LEA in the running of my case and he has acknowledged that he has the power to do so. His investigation has yet to conclude whether after 8 years of under-funding and no education my LEA has failed me and should indeed be replaced. I think it would set a precedent if he concludes it should. But it won't solve the problem of who should care for me.


Since the ombudsman concluded nearly 4 years ago that I was being treated unjustly, the SS have had in place an interim care plan that provides mum with an extra pair of hands in the house from 8 till 5 (but not always the people working those hours). Most of the time they do domestic chores but they have been available to help exercise me and to help with my physical care - getting dressed, toiletting needs, feeding etc. The ones who stay any length of time are nice people but incapable of taking responsibility even if they were allowed to. They are unqualified and ill-educated and badly paid, and lack motivation and ability to train to take responsibility for me, amply demonstrated on an almost daily basis by their dependence upon mum for instructions for example in how to cut up my food even after 3 years of working with me, or their inability without assistance to take off the sides of my wheelchair and replace them as is designed for a side transfer.


I have absolutely no idea why society expects the most vulnerable with the most complex needs to be looked after by the least able. Could it possibly be because I am not valued? Bluntly, does it matter if I choke to death over my lunch through the inability of a care worker to feed me appropriately sliced slivers and their inability thereafter to deliver first aid and their inability to know how to use our cordless telephone to summon the emergency services etc etc.


My mother is a capable woman who used to be a uniformed member of St John Ambulance trained in both nursing and first aid, used to be a lollipop lady, used to be a member of the Institute of Advanced Motorists, as well as having a good Oxford degree. She's a fat old frump with no musical sense and an inability at maths and languages that leaves one gasping but she's a darn sight more capable than anyone else who's passed my way in the last 8 years. To lead a life entwined with another's as one must do with locked-in syndrome and dependence upon hands-on enabling of everything from defecation to communication means building a relationship with someone one can admire, someone one can trust in a crisis, share time and a sense of humour with. It is best considered as requiring an Annie Sullivan. In short a clever child with complex needs needs a clever enabler and a clever enabler costs money and the authorities won't fund a clever enabler however much they are advised it is essential for my emotional and intellectual and physical well-being.


I want to take charge of my life and start to train my own enablers/pas, ie I want to recruit and select them, I want control of who comes through the door. At present my parents don't even have control of who comes into their home. I also want my home adapted which it currently is not.


There is no accessible wash basin, toilet, bath, shower and no hoist or lift. The ombudsman decided in response to my complaint that there had been no maladministration in the authorities having taken 5 years to accomplish nothing, because it was right and proper for them to consider carefully before spending public money. Me, I am just livid that the whole thing is means tested. Let me explain how the system works and then you tell me if it's fair. My dad goes to work and earns a salary. He pays his fair share of tax. My mother does not go to work because someone must look after me all day long and ensure that I am not going stir-fry crazy trapped within myself in a frenzy of uncontrollable limb thrashing hyperventilating and epilepsy, not to mention erratic temperature control and unquenchable thirsts. My parents have bought an adapted day-van so that I can go out and about including attending the hydrotherapy which is one of the few things that education fund. My mother devises what I do all day though in practice this now means that she allows me to choose because I am very self-motivated and bloody minded. I plan and build installations, I run my internationally acclaimed webzine, I deal with my correspondence and try to wrestle my life into shape, for example asking my friends in the music world, people like Jean Rigby and Paul Daniel, James Macmillan and James Wood to support my request to have my music again resourced. My mother has responsibility therefore for all my care, day and night, and my parents have the cost of my being at home all the time - lots of heating day and night, eg, as well as a lack of leisure time or time to themselves. Everything revolves around me. There is an enormous cost to them emotionally and physically and financially because they birthed a crip child.


The authorities provide necessary equipment free of charge only to the mildly and moderately disabled. Necessary equipment is not free of charge for the profoundly disabled. Despite government policies encouraging the rearing of disabled children at home by their families, government does not support the costs of such a choice. My parents would not be asked to pay a penny towards the cost of a residential placement, but on a salary of £34,000 and an existing £50,000 mortgage, they were asked to fund the first £34,000 of my equipment needs at home. They cannot do that. Without the equipment, our house is not a suitable workplace and Health & Safety regulations apparently prevent anyone other than a member of the family providing my care. It is all dependent upon assessments by people holding the purse strings. If they were to decide that I could use a hoist that was screwed to the floor to get into the bath, it would be provided to me free of charge and immediately. But they have decided that I am so disabled that I need a hoist that is attached to the ceiling and not the floor and this they will not provide free of charge. The education department have chosen to educate me at home but are unwilling to consider how enablers can take responsibility over from my mother without the necessary equipment such as hoists in situ.


It is an absurdity that these bits of paper - care plans, statements - with their worthy ideas get written without anyone having the will to sort out the bigger issues. Parents do not pay for state education, parents do not pay to have the school premises adapted for their child. Why should my parents pay? Someone will say that a line has to be drawn somewhere. Someone will say that it's all a question of money. Poppycock. If I could be cured by an operation costing fifty thousand pounds and the surgeons assured us that it was 100% safe and 100% effective, it would seem peanuts to solve the problem and the NHS would cough up the dosh. The state in any guise will not though provide a profoundly disabled child with this amount of resources in order to relieve the family of a long term stress caused by my existence. I believe there used to be a notion of "from each according to their ability, to each according to their need." Nowadays one has to be poor to get anything from the state. That's surely why so many taxpayers resent paying taxes, because one pays in and gets nothing back even at times of great need.


As a disabled person I do not have control over who comes into my home, who handles my body, how I spend my money, and have no freedom to change position and exercise to stay fit and healthy. I learn I have to do battle for resources and speak up for others less articulate than myself. My family must exhaust themselves like rickshaw runners of yore. I grow up feeling a burden and a nuisance. My brother resents the times when he must help and it becomes a chore and not a pleasure to spend time with his sis. He has to go without quite ordinary things like new trainers or a skiing holiday with his school because of the costs of me. It is a poor start to life. I think the government should ensure that whatever has happened in the past is put behind them, and they should now this minute commit themselves along with their disability discrimination legislation to resource kids born with so much to cope with so as to alleviate stress and level the playing field so that disabled kids in the community have no chips on their shoulders but can demonstrate a sturdily positive attitude towards problem solving, coping etc and can set off into life beyond 18 optimistic and confident.