November 7, 2013

Can you get help?

On Monday, November 1st Katie Price gave an interview on BBC radio 5. I know who Katie Price is mainly through my reading of Heat Magazine, and if we discount the fact that it took me a very long time to understand that Katie Price and Jordan are the same person (hey, I am still new to this country!), I think I have a rather good knowledge of her public life. I didn't know, however, that she has a disabled child. I guess it is not one of those things they write about in Heat, probably less photogenic than another photo of her in a bikini. I also didn't hear the interview on Radio 5. I am not that big on news, or current events, or politics. You might think it makes me shallow and that is fine, but the truth is that I see it as one of the privileges of immigration. Israelis are all news junkies, and I am no different. And like any recovering addict - I can't use "just a little bit". If I start down that road, I immediately find myself immersed in it. So I found a compromise that works for me - if it reaches my Facebook / Twitter (or Heat), it's news I listen to. Otherwise I have no idea what is going on. I found out about The Interview through Lucas at Abstract Lucas who wrote a post about it, and linked it to the linky in Hayley's blog Downs Side Up, and invited me, as a parent of a disabled child, to write one too.
First thing I did was find out what exactly happened. Katie Price was asked about being a parent of a disabled child. This is her answer from the BBC News site -

Walker asked her if she thought there was enough help available for families with disabled children. Price said, "There actually is a lot of help out there but some people are too ignorant and they don't want to look for the help." She mentioned that her son is "statemented" in the UK's standard education system and gets his medical treatment via the NHS: "But you do have to fill out the forms and you do have to take the time out to do it. If you look for it you can find it."
When pressed on what she meant by people being ignorant, Price said it could be that some parents are "too lazy". She said, "They probably think 'oh there isn't help' but you have to go and find it. It's not going to come to you… People might think that because their child is disabled that no one will want to help. Well, that's the wrong attitude because there is help if you go out and get it."
I debated with myself for a long time about writing a post about this subject. First of all, I think I am still not used to seeing Yon as a disabled child, or a child with disability. I physically recoils every time I have to write this phrase. I automatically want to protest, I want to shout - but he isn't, he just has Ocular Albinism! Even after all this time it is still tough for me. Secondly, I thought, who am I to write anything about any system in this country? I just came here a year and a half ago. Who am I to say anything? It always seems to me for some reason that only real British people can have an opinion. Then lastly I thought that actually, we got all the help we needed, so how can I say anything bad about the system? And all these points are valid and true, up to a point. So in the end I thought, that because of all these reasons my outlook on the subject might be different than most, and maybe it should also be said.
Orli, Just breathe - Can you get help?
Yon showing off his new glasses
The system here is so much better than the one in Israel, even if isn't perfect, it at least gives you the option of getting everything you need through the NHS. When I tell Israelis that Yon is treated through the NHS, and it's all FREE, they think I am making this up. No one believes we get to see the doctors at Moorfields or that Yon gets his glasses for free. We used to pay 90 pounds a pair when we lived in Gibraltar. In Israel every lens cost around 60 pounds. As Israelis we are programmed to seek private medical help at all times. Last week I was sitting in a room filled with British people who talked about the cost of pregnancy. None of them took into account the cost of medical tests during pregnancies. We spent thousands of pounds on each of our two pregnancies in Israel. When I told them that they looked at me like I was crazy. Maybe I am. The system should work like it does here. There should be good free medical treatment for everyone. 
I know it is not the most popular thing to say, but it leaves me speechless every time. The level of care Yon gets through the NHS and the school systems is something I would never have believed possible. It is one of the main reasons we chose to leave Israel. Not the medical treatment in itself (we didn't need any when we left, and we still keep our private medical insurance anyway), but the belief that people, just common working people, deserve to have it.
On our way to a coffee morning organised by our outreach program over half-term
No, the system isn't perfect. and no, in reality we didn't get all the help we needed. We filled the forms for Yon's behavioural assessment in April. We still don't even have a date for when it will happen; We have been waiting to get an appointment from Moorfield's visual aids clinic for three months now; The first time we heard there is a family support service in the hospital was last month; Our doctor refuses to register Yon as partially blind because she thinks we are after benefits; We were told there is no way to get a statement for a visually impaired child; 
And I think the worst of it was that we were left to drift. When we got Yon's diagnosis we were just left there to figure it all out for ourselves, with no help from anyone, no guidance, not even a leaflet with a list of what to do next. We are new to this country, but I think that in any case, even if you were born here and lived here all your life, when you first hear your child has a disability you are in a state of shock. You don't know what to do, where to go, who to turn to. And to me this is the main shortcoming of the system, that it doesn't tell you what you should ask for, what it will give you when you ask. We were fortunate because help found us. We had an amazing Nursery teacher who saved us and Yon and found us an amazing outreach program that holds our hand every step of the way (even though she is overworked and underpaid). But if it wasn't for him, we wouldn't even know where to start looking. We are fortunate because Yon's condition doesn't require much in the way of help at the moment.
But I know that is not the case for everyone. I also know that even in this country there are those who would like to see the system die. There are those who see people with disability as a liability, parents of disabled children as lazy or ignorant, those who see anyone less fortunate than themselves as a parasite on society. I do have some chosen words for those people, but I also know they won't help. The only thing that helps is talking about it, writing about it, and showing people what disability, what people who needs help, really look like.
I don't think that is what Katie Price tried to say. As a parent of a disabled child, no matter how rich or famous you are, no matter how much money you have to spend on your child's care, or how good your private medical insurance is, you will encounter those people who looks at us and never see our children for anything more than their disability. I think, if there is one thing any parent of a child with disability learns is humility (and maybe humanity), so I can't believe Katie Price thinks parents of children with disabilities are lazy. Or ignorant.
In the end of the day, the system is still here, and it will give you help. Maybe not all the help you need or deserve to get as a tax payer and as a person, but if you know which question to ask and where to go it will give you help. You just have to figure out what those questions are. 
I think, what Katie Price tried to say in her eloquent way, is exactly that. The system here in the UK exists. And though it is not perfect, and though it is our responsibility as people who've been there, as parents of disabled children, as bloggers, to constantly improve it, it still exists. And the idea that people can and will get help just because they are people still exists here. 
Let's do our best to keep it that way.
Orli, Just breathe - Can you get help?



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