There’s an old saying that you should never discuss sex, politics or religion in polite company. Well I’m afraid I am going to have to assume that my little readership is of the impolite variety. Simmer down now, those of you shifting to the edge of their seat hoping for something saucy. I’m sorry to disappoint, but it’s no-go area number three I am headed towards. Politics. I know….yawn.
But bear with me. It’s really in everyone’s best interests that I write this down. I think there is only so many more ‘uh huh, yeah that’s really interesting’ that friends and family can do, eyes glancing longingly to the door. You see, I for one do find politics quite interesting. I don’t know anywhere near as much as I should, but I am not in the camp who feel that, ‘politicians are all the same’ or that, ‘nothing ever changes.’ I believe firmly that irrespective of party, the right policies can bring about social change. And when those policies don’t work, it’s a little, well, disheartening.
Since having Little J, my exposure to statutory systems has been higher that I could ever have expected. When you have a disabled child, you have to take off the latches, open your doors and accept that the shiny shoes of the state are going to come traipsing across your new carpets. And most of the time, it will be a positive experience. But there will be challenges and frustrations. Little niggling stains of discontent that get left behind.
In the early days, I would hear the same phrase again and again from the parents of older disabled children. ‘You have to fight for everything.’ To be honest, I didn’t really believe it. I thought that the system would make sense and would step in when needed. I thought that if I did my research, filled in every form perfectly and put on my bestest smile, everything would be fine. I wanted everyone to want to take my phone calls and think how nice I was. I wanted to be liked. I still do. But things have changed over the last few months. I am suddenly aware that I have started using phrases like ‘can I just be upfront’ a lot and that I am not exactly topping the Christmas card list of an increasing number of public sector professionals. The smiley doodles on my notepad have been replaced by the phone numbers of disability advice lines. You see, I learned. And it was an exasperating lesson.
I used to think that if I had a bigger brain and more credentials I would have quite liked to be a politician. However, I have realised that my exasperation levels really aren’t up to it. Ignoring the fact that I wouldn’t get any votes and bribing people with fun size Mars bars is frowned upon, there is the fact that I would become worn down incredibly quickly. The last few months have made me realise that the system can feel truly non sensical at times. I would just become a rambling crazy lady, wandering the streets with a big flag with the word ‘logic’ magic markered on, ready to waggle it at all who opposed me.
My issue has nothing to do with individuals, or even policy. In many ways, it’s about gaps in policy. Things that I thought would be there and were in fact, missing. I know, I know…it’s tough out there. I am not immune to the mood of pessimism dripping from the public sector. Budgets are being cut. We are in a time of austerity. But I still believe that there are things that can be done.
Please also don’t think that I am ungrateful for what it in place. I had the sheer good fortune to win some existential lottery and be born in a democratic country. A country that has a social support system in place. But by its very nature, democracy requires the input of the people. So here’s my two pennies worth. Understand that this is just based upon our experiences. The little gaps in the system that we have stumbled across. The ones that suddenly trap your new stiletto heel in the middle of a busy street and leave you splayed across the pavement trying to act like it’s all ok and like you don’t want to burst into tears. These are those ones.
I’m not here to whinge or rant. I do not represent other families and I am not claiming to be right. This is just my perspective. What policy feels like from the sharp end. How things can look from the ground up. I am not one of those amazing fighters who know the ‘Children and Families Bill’ by heart and tirelessly work to bring about change. I just don’t have that level of strength in me. I am not a warrior mother or a game changer. I’m just an irritated person with an old sheet, a magic marker and a penchant for arts and crafts.
But, for what it’s worth, here are my bug bears. The three things that I wish could be different:
1) ‘We want to help people who work hard and get on.’ David Cameron speaking about the government’s childcare scheme.
Fabulous. Thank you very much. I’d like to go to work please and support my family and ensure that my son has everything he needs. It costs a lot to raise a disabled child you see. He’s now medically stable and very social, so I’m sure he’ll love nursery. I enjoy my job and it helps me to stay sane along the way. Ok, things are a bit tricky and we have lots of appointments, so I’ll see if I can go part time. I mean three days a week at nursery should be do-able. It’ll be great for him to mix with other children and of course we expect to pay the normal, bank busting fees. Sorry? What’s that? What do you mean there’s nowhere to send him?
Let me explain…
In ‘right way up land’, it can (note I said can!) all be very easy. You get pregnant. You go on maternity leave. You go back to work. You put a child in nursery. It obliterates most of your salary, but hey ho, that’s life. You drop them off at 8 and you can pick them up at 6. (Yes, I know parents are probably screaming ITS NOT THAT BLOODY EASY at me right now). Yes, things can go wrong and life can swing off the track, but there is a route, a plan and a way to pay your rent or mortgage.
In ‘upside down land’, it’s all a bit complicated. When you have a child who needs 1:1 care at all times, not only to be safe, but to fulfil the legal and insurance requirements of a childcare setting, the track ceases to exist anymore. If you are lucky enough to be a top earner, you may be able to afford a special needs nanny. If not, you are looking at a nursery. Only you will not just be paying nursery fees, you will be paying the salary of a 1:1 carer as well. Which is more than double standard nursery fees and pretty much the same cost as a nanny. Oh.
Ok, well you’ve heard about special needs nurseries, so what about them. Well, they are not there as a private option. In order to attend, your child must have a Statement of Educational Needs in place, which most boroughs are incredibly reluctant to begin issuing until the age of two (and then it takes a further six months). Even then, in our borough, most children receive only fifteen hours per week, term time only until the age of four. There is no option to pay to top this up to work-friendly hours, as you would in a mainstream nursery. So unless you live next door to some very accommodating family members, you can kiss that job goodbye. Four years is a big old gap on the cv in this competitive post-recession world. So you are, most likely, saying goodbye to the career that you once had.
There is one other option. Most local authorities have a pot of money to provide the 1:1 funding at a mainstream nursery. But there simply isn’t enough of it. The initial offer for Little J was SIX hours per week. Half a day. Well, I suppose I could get a paper round. After a very hard fought battle and lots of letter writing, we got that up to ten hours per week. That is the full extent of our childcare. Every other option has been exhausted.
The reason for my frustration around this issue isn’t the decisions of our borough, or the impact upon our family. It is the fact that it just makes absolutely no logical sense. I am (was) a tax payer. Put enough support in place for tax payers with disabled children and they will pay into the system. Increasingly so as time goes on and their careers progress. Fail to do this and in all likelihood they will be forced to claim benefits. Careers will be lost and the ability to meet the enormous expense of a disabled child will not be there. It’s that simple really. Yes, 1:1 support in nurseries costs money, but to not provide it is, in my opinion, false economy. I have been sat down more than once and asked what benefits I intend to claim – no one has asked me how they can help me get back to work.
I also want to be clear that this is an issue of choice. I am not saying that parents of disabled children should be pushed into working. We are very lucky to have Little J in a position where he is stable enough to go to nursery and he will benefit from nursery. We wouldn’t consider sending him if that wasn’t the case. Our situation also doesn’t reflect that of all disabled children. Many need their parents at home 24/7 as full time carers. Others are able to attend a nursery on a standard 1:3 staff ratio with no problems at all. However, when a child is able to attend a nursery setting, but a 1:1 has to be in place – there just are no choices.
We are clearly not alone with this, as demonstrated by a recent article in The Guardian.
There has been a lot of talk around encouraging people into the workplace. I just hope that eventually national policy will extend to recognise us too.
2) ‘Just put a pair of underpants on your head, stick two pencils up your nose and say ‘wibble’’ Blackadder Goes Forth
The first time that ‘respite’ was mentioned to me it was by a very well- meaning public sector professional. She saw beneath the forced smiles, excessively cleaned flat and the good biscuits that come out for visitors. She saw that I was exhausted. And so, she referred us to the disabled children’s team within Social Services. To a lovely social worker, who came round to assess our need for support. All of the people involved were kind and pleasant. But when I read the assessment that was produced, I felt a flash of hurt.
Because the forms that are used, the wording that is used focuses on the ability of the parents to care for their child and to ‘meet their needs.’ They are not disability specific forms. They are the forms used by social services to assess any child in need. Nothing negative was said, but the form itself bothered me. When you have a disabled child, it is a very specific situation, with specific impacts. It impacts the entire family. Surely there should be a more holistic approach to assessment?
It bothers me because there is an implication behind this. If the need for respite is based upon the parent's ability to ‘meet their child’s needs’, then the suggestion is that in order to receive support, you must be deemed incapable of doing that. And that is a very frightening thing indeed.
Yes, the ability of the parent to meet their child’s needs should be looked at. It is vital in fact. I get that. But shouldn’t other things too? Is it not relevant that my son gets up at 3am every single morning? It is not important to look beneath the façade and see that, yes, the floor may be freshly mopped, but I did that with a 23lb child with low muscle tone on my hip? We receive a very low level of respite, but I know from other families that we are lucky to even have that. The whole way that the forms are designed means that they do not recognise the full needs of a family coping with disability, because they are designed to be used for a multitude of purposes.
So my suggestion is this. It is probably a little simplistic. A little naïve. But…how about a new form? One for families with disabled children specifically. Yes, there will be some overlap and sometimes more than one form may have to be used. But maybe, just maybe it might make the process feel a little better.
3) ‘There is nothing consistent in this world but inconsistency.’ Jonathan Swift
Alright, alright, I was struggling for a quote on this one and had to Google it, I don’t really know Jonathan Swift quotes by heart (yet Blackadder, not a problem – seems I really am a product of a Netflix loving society.)
My issue here is around consistency. Or lack of it. Inconsistency is something that you become aware of very quickly with a disabled child. Live in one place and you will get so much childcare, so many hours respite, all the equipment your child needs. Live in another and, well, good luck. The services that our children are dependent upon are determined at local level. And with the move toward GP commissioning, NHS services are following suit.
Since the advent of ‘Big Society’ (no, I don’t really get what it all means either), there has been this shift towards increasing levels of local power. It can sometimes feel a bit League of Gentlemen. Local policies for local people. Only, sometimes issues are bigger than local government. Someone needs to step in at a national level, initiate policy and allocate appropriate budget to ensure that positive change happens.
Because, let’s face it, facilities for disabled children aren’t much of a local vote winner. They cost money, the benefit isn’t seen by the majority of people and we don’t make up much of the vote casting population. (Oh, and beware of making services too good in your borough or you may start seeing dust clouds headed your way. Cars and trailers with wheelchairs strapped to the roof ready to take up residence).
The difficulty with local systems, in my opinion is when there is a need for significant change. Because it is very hard to bring about. With our childcare issue, I initially approached our MP and, off the back of this, our concerns were passed on to a national department. The response that came back - ‘it’s up to your local authority.’ Only, I doubt very much that our local authority has pots of budget lying around to initiate a radical change around how childcare is provided for disabled children. National policy has to lead the way.
When we moved to our house, we focused on area, not borough. Foolish. We had no understanding of how the system worked and that we lived smack on a tri-borough border. Yes, we may be geographically close to certain areas and facilities, but they are irrelevant to us. I am now acutely aware of where the borders lie. If we lived five minutes in either direction, we would have a completely different experience. Would it be better or worse? Who knows.
That border will always be there and there will always be some inconsistencies in services from one area to another. But, at the end of the day, geographically speaking, we’re a pretty small country – I can’t help but feel that every child with additional needs should receive the same level of support, irrespective of where they live.
So, there you go. I promise to stop now all political rambling.
I actually feel a tiny glimmer of positivity about all this. You see, change is coming and I hope that it will be for the better. Currently, proposed changes to The Children and Families Bill are making their way through parliament. I feel this positivity not because of blind faith, but because I know the resolve of the amazing families who work so hard to feed into it. The ones who do a lot more than rambling and whose feedback will help to shape the future for all of us.
Exactly what that future will look like remains, as so many things in our life do, a bit of a mystery.
In the meantime, I’ll just keep living my life by the wisest quote I know,
‘Just keep swimming.’ Dory, Finding Nemo.