Special needs – the postcode lottery of care

I recently read this blog post from Scottish Mum in which she writes about how families of special needs children can miss out on support because of where they live.  It is an honest post that questions whether it is fair that only those in deprived neighbourhoods should get access to support.  The blog resonated with me so much that I felt compelled to write about my own experiences on this issue.

I live in a town that is also divided between the poor area, the affluent area and the in between area that is neither poor or affluent and where I happen to live.  The poor area has the highest levels of unemployment, social issues and crime in the area and consequently attracts the greatest amount of resources from the council.  These include support programmes and schemes to regenerate the shopping centre, refurbish schools and libraries and provide additional help for schools to support children with SEN.  Having seen how bad it can be in a deprived area, I’m all for these areas getting support but I have to question whether it is fair that the provision of resources is based on postcode to the exclusion of others.  There are families in the better parts of town that are just as poor or vulnerable but who don’t qualify for support because they live in the wrong area.  My autistic children are amongst many who have missed out.

As many of you know, my son has had a poor education to date which resulted in mental health issues and school refusal on top of his autism. My daughter has aspergers and her education also deteriorated so that she is now also out of school. Most of their problems have been due to the attitude of the school and an outdated SEN system which I have documented on this blog many a time.  What I haven’t mentioned is the postcode allocation of resources that has also impacted on my children.

In our town, the council provided additional resources to primary schools in the poor area to support children with SEN and other difficulties.  Unfortunately the same support was not extended to help similarly affected children in schools outside this area.  Now a pattern is emerging where this particular group of children are developing further difficulties.  It doesn’t take much to realise that some of these problems could have been prevented by extending support to those children as well. As a council worker told me, if my children had been schooled in the poorer area they would have benefited from additional support which could have prevented them from dropping out of school.  In other words, my children didn’t receive support because they didn’t live in the right area.  I can’t even begin to describe how I felt when I heard this.

As a family, we feel very upset about the way our children have been treated.  It has affected the whole family and it’s going to take us a long time to get over it.  At one point, I was so depressed with living in the  UK that I started to investigate the possibility of emigrating with my husband’s job.  It was a ridiculous idea to be honest because there is no way we would be able to get our son on an aeroplane let alone a new country.  His difficulties with change and his insistence for familiarity has meant we have had to stay put.  Nevertheless the fact that I ploughed the internet looking for information on living a life elsewhere is telling of my feelings towards my town and country!

After a while I realised I couldn’t spend my days dreaming of a wonderful life elsewhere and that I had to fight for the support my children needed.  I had to become one of those pushy parents that everybody seems to hate, something that became very obvious to me at a meeting I attended a few months ago.  It was a strategic meeting run by the local authority which I and a few other parents attended as a parent representatives.  It was during this meeting that another attendee viciously told me how “lucky” I was and  that it was “OK for parents like me”.  The  way she said it, the way she looked at me was filled with utter contempt.  I wanted to challenge her there and then but I realised this was not the time or the place to be drawn into a row.  Instead I replied that because I could stand up for myself meant I could also represent other parents in similar situations who had no voice.  Inside though i was furious that someone could make such a quick judgement about me without knowing me or my family’s situation.  Just because I’m articulate doesn’t mean I have an easy life.  I’m still a carer bringing up special needs kids.  I still get tired, stressed and depressed at times.  Neither does it mean I am wealthy and have the resources to buy in support, another assumption that is often made if you are a pushy parent.  Just like many other families in the UK we are reliant upon the state for our children’s education and support.

That professional and others who share her attitude would do well to pause for a moment  and consider what they would do if their children had a disability and no decent education or support.  How would they feel if they missed out on support because they lived in the wrong area?  I doubt very much that they would sit back and do nothing.


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6 Responses to Special needs – the postcode lottery of care

  1. Judith says:

    My Daughter is just starting out as an ABA Tutor working with autistic children, the help is out there, but sadly, it seems like you have to pay for it. As you say, it’s hard, because you have to stay at home to look after your children, so can’t work to pay for the care.
    I have seen that middle ground where you are just out of reach of the help because of your area or income, etc. it’s so frustrating.

    Thinking of you all, and wishing you well.

  2. Makes me so mad. I strongly believe that I have been offered less help because I am an atriculate women and my children like yours go to a school in the part of town that doesn’t get all the extra money. I had to take the children out of school the other day just to get attention and then I know that I am becoming seen as a pushy parent. If we don’t push, our children will lose out and as you say, we have to push for all the others who can’t. I think the UK postcode lottery is sad and shameful. If I lived a few miles away in Birmingham I would get more charity support too but Worcestershire seems poor. Keep up your brilliant work.

  3. Scottish Mum says:

    One of the things that annoys me is that people think we can fill the short fall just because we live in a slightly better area. Kids needs should be kids needs, not just kids needs because they live two streets over and that is where the catchment ends for the local authority regenerations schemes. It is so much worse when it’s a mental disability. Those with physical difficulties don’t have such big challenges, but even theirs are a challenge too many.

  4. I am in total agreement with Juliesmum. What on earth was that woman thinking when she spoke to you that way? Is it right that people who live in the better areas should have to pay for extra support? No, it jolly well isn’t. All our children deserve support, in equal measures obviously according to their needs. We have professionals in place but they should not be consigned only to deprived areas. It is not the child’s fault that they have been born into a family who are able to live in a better area. No one has a right to judge anyone.

    CJ x

  5. JuliesMum says:

    This makes me really angry, reading this. I know the kind of person you met at that meeting, and it is hopeless trying to talk to them. Your accent, your clothes and your address means that they can’t see that you are another human being like them – they immediately put you down as the enemy. Their loss in the end, but unfortunately yours in the short term by the sound of things.

    The problem with special needs is that there isn’t a thriving market in appropriate education or care that we can access by spending money. The idea that better off families don’t need support implies that they can make up the gap from their own pocket – but we can’t! There aren’t schools or professionals that we can pay for even if we did have the money (and in most cases we don’t have it because we can’t work). Applying – in effect – a means test is inappropriate. And children with special needs don’t have the choice to be born into poorer areas.

  6. Wow. This post makes me feel really fortunate that I live in Los Angeles.

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