I have found myself in the situation of having to justify myself recently when I don't believe I should have to, and it's really pissing me off to be quite honest. As I have previously talked about, my daughter is severely autistic, something that can't be helped, can't be changed, and is certainly not something that I have caused. There is help out there for my daughter, and for us as a family, and of course I choose to take that help, because without it our lives would be impossible. Daughter is entitled to a number of things, and deserves others. Things like disability benefits, charity grants and assistance, specialist education and care, and respite care for us as a family. Now, because she is in residential school, we have waived the right to respite care, because we no longer need it, but the rest, well, yes, I will claim what she is entitled to, and I will ask for help where it is available.
I do not see why I should have to justify this to anyone, let alone take criticism for it. But I have been criticised, and I have felt that I had to justify myself. I have no doubts in my mind that a lot of it has been caused by government spin and the media, talking about benefit fraud, lazy goodfornothings, fakers and con artists. I once thought, a long long time ago, 'why do disabled kids get all this stuff and non disabled kids get nothing?' Now I understand. The needs of a disabled child can often be the luxuries of a non disabled child, it's not as cut and dried as you might think. Things like a mobility car. Things like toys which can help with physical and mental stimulation. And there are organisations out there which recognise this, and help with the costs of it all. We have a motability car, which means that the mobility part of her DLA is spent on a three year contract hire car. We have the choice of a wide range of cars which we can select to meet our needs, they are brand new and come with servicing, repairs and maintenance included in the price. Tax is also free for disabled people. This is because my daughter has serious problems with being out and about in the big wild world. She needs constant supervision, can't cope with public transport and needs to be able to come and go when she is ready. I need to be able to get to her in an emergency, transport her around safely and attend meetings to do with her care on a regular basis. Through her DLA forms, I have proven that she needs mobility allowance, and the professionals who work with her agree with me.
Recently, the government has decided that mobility allowance should be taken away from people in residential care. This is an appalling situation for thousands of people, and I have had a good old rant about it, like you do when faced with injustice. I have mostly had understanding responses, but I have also had a number of comments relating to why the hell I should be entitled to all this stuff and I should think myself lucky I've had it so good for this long. ?????????? Yeah sure, my daughter has a severe disability, I haven't just made this stuff up to scrounge and con people out of their hard earned, she is entitled to the various benefits and things that we get, and I will make sure that I fight for everything she is entitled to. Because it's not easy to get this stuff, it's damn hard. You have to jump through hoops, lay your lives out for scrutiny by unknown pen pushers in an office somewhere, you have to beg, you have to spend hours and hours shouting, complaining, getting stroppy, being uber assertive, defying and being 'unreasonable'. Even though there are law documents stating what she is entitled to, I have had to sit through meetings, had my life examined with microscopes, listened to cricitism of my parenting skills, and a couple of years ago, even an education tribunal, just to get what she is entitled to and what she needs. Needs, not wants, not desires, needs!
Needs - those basic things which we all have to have to get through life, to exist. But these self righteous ignoramuses can decide from the comfort of their homes that we shouldn't have our needs met because they are not the same needs as theirs. Just because a disabled person needs more than them to exist, well that's not fair is it? No, it's not. Nobody asks to be disabled. It could happen to them one day. Nobody thinks 'oh, today I shall have so much pain that I can't walk', or 'I think I'll spend the rest of my life with a neurological condition which will screw up any chance I have of a 'normal' life'. So who is it REALLY unfair for?
I'm sick of having to justify my child's existence, she is here, she is autistic, she is getting more than you - GET OVER IT! She also will never have a life of her own. She will never have a boyfriend, never get married, never have children, never have a career and she will never have independence. She has to make the best of what she's got, just like everyone else.
Last week I got a grant from the Family Fund, which was set up to help families with disabled children to buy those little extras to make life easier. I haven't dared mention it for fear of being judged. But it's there, she's entitled to it, why shouldn't she have it? Wouldn't you take something you were entitled to?
Was directed to your post by Nickie at Typecast. I have an eleven year old autistic daughter who, although on the high end of the spectrum, is still disabled and therefore entitled to the benefits too. She gets DLA and I get CA. She's currently in mainstream school but probably won't be able to go to high school as she won't get the support. Her statement currently awards her 28 hours per week which is absolutely necessary if she is to come close to a normal existence. But people don't realise how hard it is. They don't see that Amy just wants to be like the other eleven year old girls in her class, with a Justin Bieber poster and a secret diary. She plays with Barbie when she's on her own, but is embarrassed to have her friends know that. Why? Because people are so damn ignorant that they fail to realise some of us are actually in need of extra care. And that extra care usually comes in the form of benefits, which many of our ignorant members of society don't need to claim because they live the perfect life. Perhaps one day the world will wake up and realise we all have a right to a normal life, even if we are disabled.
ReplyDeleteCJ xx
They don't realise, because they don't walk in our shoes. Which in itself is forgiveable. But the jealousy soon shows itself when they hear you have a new car, or family fund gave you money to buy your child a Nintendo console. I have heard a million stories, even ones where people make a fuss about a child in mainstream school having a TA when their child doesn't, despite their child having no learning difficulties. They simply won't take a moment to think about why some people need more help than they do, and they certainly don't consider how lucky they are not to be facing a lifetime of disability, discrimination and ignorance.
ReplyDeleteI just want them to stop and think about it for a minute, to just realise that there are people out there who will never have the things they take for granted, and a little help can go a long way.
Yeah, I've been feeling that lately too - I even had someone from Carers UK, of all people, accuse me of fudging my son's DLA claim to get High Rate. Excuse me, he smears, is up all hours of the night and has zero sense of danger combined with hyperactivity, I didn't "make it up"! I have even thought of getting High Rate Mobility for him now as with all the trouble at the school I paying a fortune in taxi fees (and sometimes the taxi refuses to take him). But that means, of course, I'll be getting a "free" car and I'm sure the neighbours will whisper about that one, they sure did about me getting a grant from Family Fund to start the garden works!
ReplyDeleteBut when you're stuck indoors, rarely get out, have a child who regularly blows up at school and has a dizzying amount of care, then it costs to take care of them. I've tried to keep off benefits for some time now out of some rather skewed sense of pride and not wanting "other people" to talk about all the "free" stuff I have. Now, I can't care less. Let them talk...and if they want, they can try and watch my son for a week without a break and see how long they last.
Well put Mandy (and the other comments). The number of fraudulent claims compared to people in genuine need is so low that the idea of making already difficult criteria for elledgibilty even more stringent can only be seen as the government trying to "save" money by taking it from the people who really need it in our so called tolerant, fair and inclusive society.
ReplyDeleteAs I always say it's a shame only those who are currently affected, not those who so easily could be in the future (I never imagined getting a condition rendering me disabled at 38) will read things like this or make a noise.
DW