0 comment Tuesday, May 13, 2014 | admin
((I've been working on this for a day or two, pain in my fingers has meant I had to spread it out a bit and also copy and paste from pieces I used for One Month Before Heartbreak. I've sent this out to as many links as I could as I am most bothered by the lack of media cover. We can sit here and doom and gloom and Illuminati-theorise about that...but I can't be arsed with that sort of thing. Instead, I'll do something, and so here it is.))
I am a lone disabled parent with a disabled child and therefore cannot take part in the protests today as I can barely stand. More to the point I receive no help or assistance from Social Services, my DLA payments don�t even take my lack of mobility into consideration and I have no childcare respite coverage. I struggle to work in the arts industry which has had 30% of its funding cut so galleries are closing. Writing may be easy now thanks to Kindle but it is a flooded market with free books so no one wants to pay for writing anymore. In addition cuts to libraries and the royalties libraries used to pay writers for having their books on the shelves have once again made writing a "hobby" and not a career. This is the only work I can do as I can write and paint in bed, exhausted even after 20 minutes. This email has taken me several days to write, so I would appreciate it if you actually bothered to read it. The pain in my fingers has been intense with the typing and would make other people burst into tears; other people who don�t have to deal with this sort of pain on a daily basis. If you're not disabled and therefore think this doesn't apply to you, I ask you to read it anyway. It won't be a comfortable read and it's not supposed to be. It may shock you. It may anger you. If it does? Good, then maybe it might inspire you to do something as neither I, my son, nor anyone like me can fight this battle alone, and we need your help. Please keep in mind that you are not just fighting for a stranger, but for your own potential future. As BendyGirl stated recently in her article in the Guardian: "It might seem too dull or difficult to think about but, remember, we disabled people are the same as you, it's just that we've already experienced our life-altering situation and you are yet to do so." A woman complained recently that her son, who is 6 years old and autistic, is about to lose his speech therapy plan. The response from Mr Cameron was not exactly encouraging. "You have to make the fight" to get what your children need, is his response. Excuse me, what planet are you on, Dave? As the mother of an autistic child all I have been doing for the past four years is fight for my son's needs. I fought to get him a Statement, then I had to fight for the Statement to be changed. Then I fought again to get him appropriate support as the Statement didn't give enough, and now we're having emergency review two. I've threatened to take my son out of school due to his behaviour and that has been a fight of the past year - the NAS society psychologist dropped in this week and admitted the school is woefully incapable when it comes to autistic children. They were going to put off any meeting for a review until sometime in March. When I wrote my letter to the LEA, suddenly they were able to hold an emergency meeting � and again, no Statement change (as a matter of fact we�re now being told Statementing may be part of the cuts). And so it goes, and so it has gone for four bloody years of tears and monthly meetings, phone calls from the school when my son exploded and attacked other studens, and zero action from the local council. As a parent of a disabled child, you have to fight for everything; care plans and equipment, education and transport, inclusion and respite care. Even before all these cuts and tightening-the-belt, nothing has ever been given out with ease. I got no help from the council for garden accessibility for my son even though recent clauses make garden access for disabled people a right under the Disabled Facilities Grant. I get no help with respite care, no assistance with getting equipment for my son's room, and it was me to told the school about the various autism education projects out there because they didn't even bother to look for them. I can heartily assure the Right Honourable Gentleman that the mother in question probably fought tooth and claw to get her child the speech and language provision for her child. Chances are she fought like hell to get him diagnosed as there seems to be a decided reluctance for labelling children with autism in the medical profession which hinders any progress you might be able to make. She fights every day. The patronising language of a man who had enough money to hire as many nannies, equipment and medical help he needed when his own son was alive makes me ill. Not all of us have well lined pockets, and if you never actually work with the social system and realise how much you have to beg for even the simplest of items, you have no idea how much of a battle everything is. My son has been listed as a "child in need" since I contacted the social services some time June. We set out trying to get a care assessment for him, and things seemed to move forward. From Citizens Advice Bureau a "child in need" is entitled to the following: � day care facilities for children under 5 and not yet at school � after-school and holiday care or activities for school age children � advice, guidance and counselling � occupational, social, cultural or recreational activities � home helps and laundry facilities � assistance with travelling to and from home in order to use any services provided by the local authority � assistance for the child and family to have a holiday � family centres � financial assistance usually in the form of a loan, see below � respite care in Northern Ireland � looking after the child, see below. The local authority can also provide the following services to all children in its area, not just children in . need:- � day care facilities for children under five and not yet at school � after-school and holiday care or activities for school age children. Guess how much of this I actually get. Go on, I'll give you a few minutes. Did you guess "none of the above"? That would be correct. I get none of this. No help for transport to appointments though it's supposed to exist. No help to after school activities. No respite. No holiday care. No home helps. What I do get is scoffed off whenever I ask. And, apparently, what I also get is monitoring to see when it's time to take my son away from me and place him in care. That's the other scary bit about having a Child in Need; it seems the authorities are poised to try and take a child away but not to actually put anything in place which might have prevented this in the first place. Because I have missed appointments - these comprise of three hours of preparation for a ten minute appointment of saying the same things over and over again to different people - I couldn't get my son to due to both his and my condition, this is seen as "neglect". My son's behaviour at school escalated to such a degree that of course their first reaction was to blame abuse at home, which is a completely laughable prospect for anyone who knows me. It couldn�t be because, well, my son hates school. I've been seeing a lot of denial - maybe this is an English thing to sit back and say "Oh, they'll never do that, it will sort itself out, they can't possibly cut that, it's vital!" It's as if people refuse to believe what is already being discussed in Parliament as happening until it's too late to get angry. And then of course there's the people who aren't disabled and just plain don't think it matters to them. "Taxpayers are getting hit badly too, you know" is a common statement, but as I and others have said before, many disabled people are or have been taxpayers themselves. Right up to the day of the fatal accident, or the biopsy test which came back positive, or the numbness in their limbs became paralysis. And when we were making our contributions, believing that the money we were giving would help us out in the end, we realised suddenly that it wasn't there. DLA is NOT a "benefit". It is funding provided from NI contributions to cover the costs of disability which falls through the cracks of the system. There is no way this numbers into the tens of thousands, either - as outlined by Sue from Diary of a Benefit Scrounger these payments for DLA are paltry. I get a grand total of �350 a month for my son's care, and that has to cover a load of things; bedding for his bedwetting, the supplements he takes for concentration, transportation to countless meetings as the bus is too stressful for him and exhausting for me. It pays the water and the heat bills as the heat needs to be higher in my home due to his penchant to run about naked and his need for frequent bathing due to accidents, as well as for the best food I can buy for him as he eats so restrictively and I have to be sure his diet is balanced. If that sounds like a lot, I've actually got it easy - other people with children who are unable to walk or move independently have to somehow fund bed and bath hoists, wheelchair accessible vehicles (which even through Motability require a massive premium), special clothing for tubal feeds, toileting supplies, petrol costs, eating aids and if one is lucky respite and cleaning help. It's a massive expense and believe it or not, NHS does NOT fund any of these things. That's what DLA is supposed to be for...so when it's removed, what's going to happen? Well, as Ali has already posted in her blog, for many people there is only one final solution. I wish I could say her entry was an isolated incident, but it isn't. The sheer number of blogs and statements I have seen recently on forums for disabled people who are talking about suicide as the only solution is horrifying. I have seen the outcry and demonisation of parents who took their lives and the lives of their autistic children, about what horrible people they were and why didn't they just go get help, etc.,etc. The truth of the matter is the help is not there. Believe me, I know. And I also had my dark days, and one day in particular last summer in which I walked out of my house and didn't come back for nine hours. I gave up entirely and had every intention of just disappearing and leaving my son to whomever happened to call the alarm when I wasn't there in the afternoon. You would have thought social services and mental health and several other groups would have rushed in...but they didn't. I was released from hospital (alone...no one even bothered to call a taxi or get me someone to make sure I got home and didn't just disappear again), a note was put in my file that I was "mentally unstable" - and therefore they could just ignore any pleas I made as melodramatic - and that was that. Nothing changed. Nothing at all. I have had to fight to try and get any assistance at all, and to be quite honest, it wasn't worth the battle. Two years later, and my son is still going to the same completely ineffectual school who is still completely incapable of dealing with his behaviour and rages. Almost a year later, my pleas to social services have fallen on deaf ears and I have been turned down twice for care plans or respite even though I am now completely housebound and trapped indoors. I am on my second DLA application, always having to address issues as either affecting my son or myself as no one seems to want to listen about how everything is affecting us as a family. Nothing changed when I was in hospital twice and had no childcare coverage, nothing has changed even though the consultant sat down and told me "If you don�t slow down you�re going to die of heart failure within a year or two." I am still here, still trying to care for my son, fight for his education, fight for help for myself, fight for DLA, fight to keep working, fight for independence�and all the while I�m well aware all the stress and struggle is just pounding more nails into my own coffin. I have been applauded for working - "Well you must be feeling better then!" as my son's social worker told me yesterday � but I�m baffled that anyone thinks this is because I want to try to burn the candle at both ends rather than because without it my child and I would be on the street. I have been assessed and being perfectly capable of caring for myself and my son because I can garden even though my laundry and dishes were piled up. This is not because I am cured, but because I have little choice. If I don't work, I don't get tax credits. If I don't get tax credits I lose my house, and if I lose that, there goes my way of living. I'll be forced onto a council estate and placed under scrutiny for every move (I hobbled to the post box, therefore it must mean I�m lying about being disabled, quick call the fraudline!) I make to try and force me into a dead-end part time job just to make the numbers balance out. If I can't keep the job (and of course with my energy levels there's no chance I could) I'd lose the council house and benefits. That isn't the future I foresaw for myself ten years ago. I don't think anyone would have done. But here it is, and therefore I am fighting for what few scraps I have to keep doing what I'm doing. I keep hearing people say "Well if you�re going to protest, come up with an alternative." I don�t understand this reasoning � we voted people into power who are supposed to be perfectly capable of finding those alternatives for us. It isn�t our job to do that � it�s theirs. That is what they are elected for, and if they aren�t capable of making these decisions I do wonder why we bother having a voted-in government at all. What�s the point? I�m also rather aghast at the utter silence from the media � how is it that none of these cuts ever reach the news? We�re bombarded almost daily with reports of "caught scroungers" and a few charity pieces, but anything written by people who are directly in the line of fire of these cuts gets ignored. It�s "emotive". Well, so is Egypt, Libya and Japan but it seems to get plenty of press at the moment�why not what is happening here? So, then: what now? Well, if you've made it this far, then you've done the first part; you're actually listening. Now comes the uncomfortable part - picture yourself right where I am, and understand it is not anywhere near as remote a possibility as you think. One night the police could knock at the door with bad news about your son, one day the cough you've had which didn't go away could turn out to be a lot more than just a cough. And of course, like it or not, we are all going to get old, and the older we get, the more susceptible to illness. Living longer does not necessarily mean living well, merely a death considerably prolonged. In other words these cuts apply to all of us; at some point they will apply to you whether you need it yet or not. You're no different from us, nor we from you...it's just we are the ones who reached this point first. Your time is coming, so prepare for it. Think about it, report it�and fight it.
I am a lone disabled parent with a disabled child and therefore cannot take part in the protests today as I can barely stand. More to the point I receive no help or assistance from Social Services, my DLA payments don�t even take my lack of mobility into consideration and I have no childcare respite coverage. I struggle to work in the arts industry which has had 30% of its funding cut so galleries are closing. Writing may be easy now thanks to Kindle but it is a flooded market with free books so no one wants to pay for writing anymore. In addition cuts to libraries and the royalties libraries used to pay writers for having their books on the shelves have once again made writing a "hobby" and not a career. This is the only work I can do as I can write and paint in bed, exhausted even after 20 minutes. This email has taken me several days to write, so I would appreciate it if you actually bothered to read it. The pain in my fingers has been intense with the typing and would make other people burst into tears; other people who don�t have to deal with this sort of pain on a daily basis. If you're not disabled and therefore think this doesn't apply to you, I ask you to read it anyway. It won't be a comfortable read and it's not supposed to be. It may shock you. It may anger you. If it does? Good, then maybe it might inspire you to do something as neither I, my son, nor anyone like me can fight this battle alone, and we need your help. Please keep in mind that you are not just fighting for a stranger, but for your own potential future. As BendyGirl stated recently in her article in the Guardian: "It might seem too dull or difficult to think about but, remember, we disabled people are the same as you, it's just that we've already experienced our life-altering situation and you are yet to do so." A woman complained recently that her son, who is 6 years old and autistic, is about to lose his speech therapy plan. The response from Mr Cameron was not exactly encouraging. "You have to make the fight" to get what your children need, is his response. Excuse me, what planet are you on, Dave? As the mother of an autistic child all I have been doing for the past four years is fight for my son's needs. I fought to get him a Statement, then I had to fight for the Statement to be changed. Then I fought again to get him appropriate support as the Statement didn't give enough, and now we're having emergency review two. I've threatened to take my son out of school due to his behaviour and that has been a fight of the past year - the NAS society psychologist dropped in this week and admitted the school is woefully incapable when it comes to autistic children. They were going to put off any meeting for a review until sometime in March. When I wrote my letter to the LEA, suddenly they were able to hold an emergency meeting � and again, no Statement change (as a matter of fact we�re now being told Statementing may be part of the cuts). And so it goes, and so it has gone for four bloody years of tears and monthly meetings, phone calls from the school when my son exploded and attacked other studens, and zero action from the local council. As a parent of a disabled child, you have to fight for everything; care plans and equipment, education and transport, inclusion and respite care. Even before all these cuts and tightening-the-belt, nothing has ever been given out with ease. I got no help from the council for garden accessibility for my son even though recent clauses make garden access for disabled people a right under the Disabled Facilities Grant. I get no help with respite care, no assistance with getting equipment for my son's room, and it was me to told the school about the various autism education projects out there because they didn't even bother to look for them. I can heartily assure the Right Honourable Gentleman that the mother in question probably fought tooth and claw to get her child the speech and language provision for her child. Chances are she fought like hell to get him diagnosed as there seems to be a decided reluctance for labelling children with autism in the medical profession which hinders any progress you might be able to make. She fights every day. The patronising language of a man who had enough money to hire as many nannies, equipment and medical help he needed when his own son was alive makes me ill. Not all of us have well lined pockets, and if you never actually work with the social system and realise how much you have to beg for even the simplest of items, you have no idea how much of a battle everything is. My son has been listed as a "child in need" since I contacted the social services some time June. We set out trying to get a care assessment for him, and things seemed to move forward. From Citizens Advice Bureau a "child in need" is entitled to the following: � day care facilities for children under 5 and not yet at school � after-school and holiday care or activities for school age children � advice, guidance and counselling � occupational, social, cultural or recreational activities � home helps and laundry facilities � assistance with travelling to and from home in order to use any services provided by the local authority � assistance for the child and family to have a holiday � family centres � financial assistance usually in the form of a loan, see below � respite care in Northern Ireland � looking after the child, see below. The local authority can also provide the following services to all children in its area, not just children in . need:- � day care facilities for children under five and not yet at school � after-school and holiday care or activities for school age children. Guess how much of this I actually get. Go on, I'll give you a few minutes. Did you guess "none of the above"? That would be correct. I get none of this. No help for transport to appointments though it's supposed to exist. No help to after school activities. No respite. No holiday care. No home helps. What I do get is scoffed off whenever I ask. And, apparently, what I also get is monitoring to see when it's time to take my son away from me and place him in care. That's the other scary bit about having a Child in Need; it seems the authorities are poised to try and take a child away but not to actually put anything in place which might have prevented this in the first place. Because I have missed appointments - these comprise of three hours of preparation for a ten minute appointment of saying the same things over and over again to different people - I couldn't get my son to due to both his and my condition, this is seen as "neglect". My son's behaviour at school escalated to such a degree that of course their first reaction was to blame abuse at home, which is a completely laughable prospect for anyone who knows me. It couldn�t be because, well, my son hates school. I've been seeing a lot of denial - maybe this is an English thing to sit back and say "Oh, they'll never do that, it will sort itself out, they can't possibly cut that, it's vital!" It's as if people refuse to believe what is already being discussed in Parliament as happening until it's too late to get angry. And then of course there's the people who aren't disabled and just plain don't think it matters to them. "Taxpayers are getting hit badly too, you know" is a common statement, but as I and others have said before, many disabled people are or have been taxpayers themselves. Right up to the day of the fatal accident, or the biopsy test which came back positive, or the numbness in their limbs became paralysis. And when we were making our contributions, believing that the money we were giving would help us out in the end, we realised suddenly that it wasn't there. DLA is NOT a "benefit". It is funding provided from NI contributions to cover the costs of disability which falls through the cracks of the system. There is no way this numbers into the tens of thousands, either - as outlined by Sue from Diary of a Benefit Scrounger these payments for DLA are paltry. I get a grand total of �350 a month for my son's care, and that has to cover a load of things; bedding for his bedwetting, the supplements he takes for concentration, transportation to countless meetings as the bus is too stressful for him and exhausting for me. It pays the water and the heat bills as the heat needs to be higher in my home due to his penchant to run about naked and his need for frequent bathing due to accidents, as well as for the best food I can buy for him as he eats so restrictively and I have to be sure his diet is balanced. If that sounds like a lot, I've actually got it easy - other people with children who are unable to walk or move independently have to somehow fund bed and bath hoists, wheelchair accessible vehicles (which even through Motability require a massive premium), special clothing for tubal feeds, toileting supplies, petrol costs, eating aids and if one is lucky respite and cleaning help. It's a massive expense and believe it or not, NHS does NOT fund any of these things. That's what DLA is supposed to be for...so when it's removed, what's going to happen? Well, as Ali has already posted in her blog, for many people there is only one final solution. I wish I could say her entry was an isolated incident, but it isn't. The sheer number of blogs and statements I have seen recently on forums for disabled people who are talking about suicide as the only solution is horrifying. I have seen the outcry and demonisation of parents who took their lives and the lives of their autistic children, about what horrible people they were and why didn't they just go get help, etc.,etc. The truth of the matter is the help is not there. Believe me, I know. And I also had my dark days, and one day in particular last summer in which I walked out of my house and didn't come back for nine hours. I gave up entirely and had every intention of just disappearing and leaving my son to whomever happened to call the alarm when I wasn't there in the afternoon. You would have thought social services and mental health and several other groups would have rushed in...but they didn't. I was released from hospital (alone...no one even bothered to call a taxi or get me someone to make sure I got home and didn't just disappear again), a note was put in my file that I was "mentally unstable" - and therefore they could just ignore any pleas I made as melodramatic - and that was that. Nothing changed. Nothing at all. I have had to fight to try and get any assistance at all, and to be quite honest, it wasn't worth the battle. Two years later, and my son is still going to the same completely ineffectual school who is still completely incapable of dealing with his behaviour and rages. Almost a year later, my pleas to social services have fallen on deaf ears and I have been turned down twice for care plans or respite even though I am now completely housebound and trapped indoors. I am on my second DLA application, always having to address issues as either affecting my son or myself as no one seems to want to listen about how everything is affecting us as a family. Nothing changed when I was in hospital twice and had no childcare coverage, nothing has changed even though the consultant sat down and told me "If you don�t slow down you�re going to die of heart failure within a year or two." I am still here, still trying to care for my son, fight for his education, fight for help for myself, fight for DLA, fight to keep working, fight for independence�and all the while I�m well aware all the stress and struggle is just pounding more nails into my own coffin. I have been applauded for working - "Well you must be feeling better then!" as my son's social worker told me yesterday � but I�m baffled that anyone thinks this is because I want to try to burn the candle at both ends rather than because without it my child and I would be on the street. I have been assessed and being perfectly capable of caring for myself and my son because I can garden even though my laundry and dishes were piled up. This is not because I am cured, but because I have little choice. If I don't work, I don't get tax credits. If I don't get tax credits I lose my house, and if I lose that, there goes my way of living. I'll be forced onto a council estate and placed under scrutiny for every move (I hobbled to the post box, therefore it must mean I�m lying about being disabled, quick call the fraudline!) I make to try and force me into a dead-end part time job just to make the numbers balance out. If I can't keep the job (and of course with my energy levels there's no chance I could) I'd lose the council house and benefits. That isn't the future I foresaw for myself ten years ago. I don't think anyone would have done. But here it is, and therefore I am fighting for what few scraps I have to keep doing what I'm doing. I keep hearing people say "Well if you�re going to protest, come up with an alternative." I don�t understand this reasoning � we voted people into power who are supposed to be perfectly capable of finding those alternatives for us. It isn�t our job to do that � it�s theirs. That is what they are elected for, and if they aren�t capable of making these decisions I do wonder why we bother having a voted-in government at all. What�s the point? I�m also rather aghast at the utter silence from the media � how is it that none of these cuts ever reach the news? We�re bombarded almost daily with reports of "caught scroungers" and a few charity pieces, but anything written by people who are directly in the line of fire of these cuts gets ignored. It�s "emotive". Well, so is Egypt, Libya and Japan but it seems to get plenty of press at the moment�why not what is happening here? So, then: what now? Well, if you've made it this far, then you've done the first part; you're actually listening. Now comes the uncomfortable part - picture yourself right where I am, and understand it is not anywhere near as remote a possibility as you think. One night the police could knock at the door with bad news about your son, one day the cough you've had which didn't go away could turn out to be a lot more than just a cough. And of course, like it or not, we are all going to get old, and the older we get, the more susceptible to illness. Living longer does not necessarily mean living well, merely a death considerably prolonged. In other words these cuts apply to all of us; at some point they will apply to you whether you need it yet or not. You're no different from us, nor we from you...it's just we are the ones who reached this point first. Your time is coming, so prepare for it. Think about it, report it�and fight it.
Labels: Advocacy