Image: luigi diamanti / FreeDigitalPhotos.net
Seeing a conversation on a local network actually got me annoyed enough to blog about it.
It’s actually got nothing to do with the people who replied to the discussion, or even those who were involved in it as they don’t know any better, and kudos to the man giving up his time to go volunteer to help some kids, but that’s not the whole picture.
I’m not one for shying away from some minor controversy, and although I’ve tamed it down recently due to more and more people finding out who I am locally, there are some issues that I am still going to talk about.
Special needs, deprivation and injustice are going to be included, and not talked about in the hushed do gooder tones that we tend to be expected to conform to, nor as the eternally grateful for small scraps thrown our way that others think we should keep quiet for.
The politics
It’s a much wider and political issue that means lots of families miss out on the help and support available in our city, and it does depend on your postcode. I’d imagine it’s a common problem across the UK.
There’s plenty of information being bandied about, talked about and worked on when it comes to the health issues being a postcode lottery. Those make front page news, but hey, yet again, our disabled and their families can’t fight, argue, or do anything about it as they’ve not got a big enough supporter network.
I answered on the forum, which retrospectively was not a good idea as they don’t know any better.
When I said that parents don’t generally get told what is available for special needs kids, I got pointed to a completely pathetic and useless for a parent website that gathers charities together in Aberdeen. That’s not the fault of the person who tried to help by posting the link, but it shows what a pathetically poor and useless system we have of letting people know what there is available to them. It’s all chance conversations, meeting the right people, or plain and simple good luck (heaven help you if you don’t have a computer).
If I lived 5 miles further south, all my kids would be being helped, be in support programmes, or getting access to clubs and activities that I can’t afford for mine. If I lived 5 miles further south, it wouldn’t matter if I earned a large salary and lived in a council house, I’d still get access.
A friend of mine with two disabled youngsters can’t get access to much, and she’s now a single parent living on a part-time wage. It’s her own tough luck that she lives in the wrong suburb to be eligible for much, but she’s learning to fight.
Schemes in the “poorer” areas of town should be able to extend to lower-income parents from the other suburbs of town. I say “poorer” as I know many people living in those areas with much more disposable income that we have these days, and we manage. I also know how bad some of the deprivation can be in those areas so I am not talking from the standpoint of someone who doesn’t know. It’s from the standpoint of fairness across cities and not in specific pockets of cities.
Yes, it makes political sense in the world of “doing good” to be seen to support those in recognised deprivation areas for higher vote count, but where is the room for fairness? Or does that cost too much money versus the cost of a vote?
Right to share
I’m opinionated, I can look for things and my kids have some support, but it took years of fighting to get it. We shouldn’t have to fight.
NONE of us want anyone to feel sorry for us, but we do want to be able to talk about it in general conversation, and in the same way that other people talk about their daily lives.
Some might talk about shoes, or potty training, or kids not doing what they’re told first time and using star charts. It chills me to the bone that those same people won’t discuss punching, getting bitten by tweens and teens, services (or lack of) and just how difficult being the parent of a behaviourally challenged special needs child can be.
Yes it can be fabulous too, but if people are allowed to tell us all about how stressed they are potty training, or how well their kids are doing, their latest medals and accomplishments, or how long they’ve been at the top of the class, then I reserve the right to talk about how awful it can be to live with a child in mental anguish every day and share what progress he is making, even if it is just punching me 5 times a day rather than 15.
I hate being met with a wall of silence when I mention middler after I’ve just listened to someone rabbiting on for half an hour about their wee Johnny. If people don’t know what to say, they should just say they don’t know what to say and then we can help make it easier for them.
Example of postcode distribution
Look at this for an example. It’s not to feel sorry for me as my kids do ok, but it shows the system.
This looks fabulous. Befriend a Child.
We’ve been on the waiting list for years for my eldest. Supporting documents have gone in from social work and adoption teams. Paperwork has been updated several times on request.
We’ve been told in the past that there are carers recruited and who just need to be allocated.
We were supposed to be a priority over a year ago.
My vulnerable eldest, one of three, with a behaviourally challenged special needs brother and needing help for himself gets nothing. His friend who lives in a deprivation area and has parents with more disposable income than we have and no siblings has a befriender. Supposedly to give his parents a break from their very street wise child.
I don’t grudge his friend a befriender as he needs one too, but it looks like blatant postcode lottery distribution, even if it isn’t. What makes it worse, is that nobody ever gets back in touch with you to let you know what’s going on.
My boy is heading to secondary school in August and we’ve probably missed the window to give him a very positive experience outside of the home with someone who doesn’t share his mostly pretty difficult home life with his brother. I had made the mistake of telling him a befriender would be coming soon, after being told it wouldn’t be long. What a HUGE mistake that was.
Availablity
Maybe there are other things that are available, but there’s no easy way to find out unless you are well enough educated to go seek it out for yourself, or live in the right part of town.
So yes, now putting my toys back in my pram, it sticks in my throat to see another example on a forum of something that is only available to those from the deprivation area postcodes. And if I feel like that, how on earth do the parents who can’t stand up for themselves feel?
Very nice! You always impress me with your writing skills. Thanks for this very much interesting and wonderful post.
The postcode allocation system is never going to be fair. Within areas of deprivation there will be better areas and vice versa. There will be families with more money and those with less in all areas. I think you either have to make it means based or better still available to all to get fairness.
I agree, means based I could live with, but this having to live in one of the 7 areas designated by some beaurocrat to get kids access to lots of the help out there is ridiculous.
Thanks for posting this. It’s something I don’t have experience with but I have seen friends and colleagues struggle. One of my friends from work shares his two bedroomed council flat with his father, mother, two sisters who have learning difficulties and are deaf and mute, wife, daughter and son who both appear to have behavioural issues due to the overcrowding (confirmed in writing by educators and health visitors) and they are not considered to be a rehousing priority.
The most vulnerable in society appear to get very little in life unless they fight tooth and nail. From what little I know, postcode lotteries don’t just exist due to funding inequality but also due to inequality in the abilities, training and enthusiasm of staff.
It sucks. I don’t know what the answer is and I suspect there isn’t an easy one. I had to fight for 11 years to get decent treatment for my own issues which was bad enough. If someone has to fight for that long for a child, they will be changed for life.
How would you resolve this?
That is one of the unforgivable situations. How on earth can mental health survive with someone who has to live under those circumstances and work all day as well.
Fighting tooth and nail is the only thing that seems to work with mental health and hidden disabilities. I often wish my kids were autistic rather than this airy fairy learning difficulties so that they’d get more help.
It took me 7 years to get a doctor to take me seriously about abdominal pain and by the time they opened me up, my internal organs were like mush. I lost ability to have kids thanks to those idiot GP’s who wouldn’t refer me as they couldn’t feel anything wrong when they poked around.
It’s sad that people have to feel like that
All too common though.
We get nothing. My son has had a very poor education to date and spells of mental health issues, school refusal on top of his ASD. My daughter has aspergers and her education deteriorated so that she is now out of school; we are going through the process to get her more help but we are not hopeful that we will find any suitable schooling for her. In the more deprived areas our council are piling in loads of resources to support children like mine in the primary schools yet in other areas of the town children with similar disabilities get nothing. Now the council are noticing that these unsupported special needs children are becoming mentally unwell and dropping out of school due to the lack of support. Yet noone in the council will address this inequality in the provision of resources. Not surprisingly these parents of the unsupported children are forced to fight for services but it falls on deaf ears. Its a terrible situation not helped by the council disliking pushy parents believing them to be middle class and wealthy. Often this stereotype is wrong; these are ordinary families just trying to do their best for their child but because they are living in the better area which is by no means affluent, they are often overlooked. Not surprisingly we have a growing divide in our town and a lot of resentment.
Thanks for the comment, I expected to not have any comments for this one. It’s the same here, my boy has lost out on two years of education thanks to the education and political environment and it does create a divide where the deprivation area kids in some cases get far more than the kids who need it in other areas.
The school I would have liked him to go to after they stitched him up at 9 years old would have been cheaper than the package we finally got just to help him get back into school. It really stinks how badly some of our kids are treated, but we can fight. I really really feel sorry for the parents who can’t and I see plenty of their kids going about, with parents at their wits end. Sorry to hear you are still in the same predicament. We’re through the school issues and in a good place now for that, but the family hasn’t fully recovered from it yet. It did a lot of damage to the kids.
The worst bit is that they think all parents in supposedly well off areas are rolling in money when most of the time they’re just getting by. So sad to see it isn’t improving for others. Looks like it’s a UK wide thing. Doesn’t help that the Government stitched them up too for families trying to better themselves by working and paying for the more expensive childcare special needs kids have to get. Thankfully here a charity does it and they cap the costs as it would be totally unaffordable otherwise.
Im glad to read things are better for you but I understand when you say about not being fully recovered. As a family, we feel very upset and angry about the way our children have been treated. Its affected the whole family and its going to take us a very long time to get over the way we have been treated. Even worse was the way we were treated by a local autism charity; it was quite clear to us that we were the wrong sort of family to receive their help yet my son was in a very bad place at the time (still is). I was shocked at how a support worker could be so judgemental towards us and now I refuse to have anything to do with them. You know, a child with autism is a child with autism wherever they live and they all need access to support and therapies. There may be a minority of people who have the wealth to get services but most families aren’t like this and in any case these children and young people are vulnerable individuals and they should not be discriminated against because of their family backgrounds which is what is going on. Thanks for writing this; it is a brave post but highlights a growing problem.
I’m not sure the kids are a priority unless they have a disability that can be seen physically, or they live in an autism friendly area.
The biggest problem is, and it was a doctor who told me this, that the system and education differences are causing mental health problems in kids, who only had their disability to worry about until the system let them down.