The diagnosis was delivered to me over the phone. I remember as I came off the phone I could hear the sobbing as I felt the life drain out of every limb. I crumpled to the floor and felt the huge wet tears dripping down my face. It was me making that noise and I just sat and cried. My sweet little Erin needed treatment for developmental dysplasia of the hip (DDH). That was a low point but there were lower depths still to fall.
A week later I had gotton over the initial shock, I felt calm as I walked into the consultants hip, jaggling a 22month old baby on one hip and my handbag on the other. I had even gone to the appointment alone as I had done my research and knew what treatment Erin would need. I had already seen my Headteacher at the school where I work and told him that I would need six weeks off. I was still apprehensive but I had reconciled myself with the fact that Erin wasn’t ill in the truest sense of the word. I wasn’t facing losing her or putting her through painful procedures, she wasn’t going to be sick and so on.
The world then stopped spinning again. All I heard was 18 weeks in spica, followed by operation followed by spica and brace.
I didn’t speak.
I didn’t question.
I was too shocked.
I left the building.
Once my husband was home we soon realised what a gruelling year ahead we had coming. We had no choice – no choice but for me to take a 11 months off work. Unpaid.
Not only was the treatment going to be for far longer than I had appreciated but every six weeks Erin needs a general anaesthetic for the cast to be changed. We are currently on day 150 which is week 16. As a teacher I have no holidays that can be booked, I can’t book off the couple of days that Erin is in hospital each month. Would you be happy for your child’s A Level teacher to be constantly missing lessons that are not covered by another teacher because of family circumstances? I actually regard my students higher than that. My students need a qualified specialist in the classroom to get them through the course and I wouldn’t be serving the students I care about if I had tried to do both.
So with a heavy weight around my neck I found myself asking the Head for the rest of the academic year off. Thankfully my colleagues and the governors have been 100% supportive for which I am eternally grateful.
But where does that leave a family of five? A family that has outgoings that don’t change because one child is ill. A family with a mortgage and children to feed. It is then that you find yourself in a position you haven’t been in before. You find yourself googling benefits that you may be entitled too. After paying into a system you believe that you will be supported.
We applied for Disability Living Allowance, I knew that if succesful this would be the gateway to Carers Allowance also. Thankfully we have been succesful and although it in no way matches my salary it has been essential for us. Erin needs around the clock care. Her care needs are greater than other children of her age. I can’t potty train her – for one she couldn’t sit on a toilet or potty. This means that the cost of nappies is more for us. Erin can’t be left alone with drink in case it is spilt on her cast, Erin can’t get her own toys to play with, she is immobile. I have had to buy a new car seat to accommodate the cast, a double buggy to take her outside for walks safely. Erin can’t dress herself due to the shape and size of the cast, Erin also required a complete new set of clothes including leg warmers and dresses in a couple of sizes bigger. These items are not cheap.
So where am I going with this post?
WELFARE REFORMS – DLA is going. To be replaced. And this is unfair.
The wonderful coalition government has decided to cut 20% of current claimants out. This isn’t based on need, but purely to save some money. Money that is helping, money that actually allows disabled people some independence. DLA has the lowest fraud rate because it requires filling in a 50 page application form. You can’t cheat DLA.
However under new PIP proposals (which may apply to children, we haven’t yet been told comprehensibly) Erin would have had to have been treated and diagnosed for six months before we could apply. Six months, yet I still would have had the increased care needs and the cost associated to them. It is widely believed that those on lower care rates will be the ones that lose out. This is worrying.
For us, we would still qualify, but we would have had a longer wait for money that we need to ensure that Erin gets the best care. Parents like us would hae to wait six months for financial support but the care needs are there from the start. What is so wrong is that we only need the support and help for a relatively short time. A year or two. After this time our children will hopefully be fixed up and back in school or at nursery – whilst thier parents are back in the workplace putting money back into the system.
I pay my dues, I didn’t want to take a year off work, I didn’t want Erin to be in hip spica for such a long time. I want to be the one at home looking after my daughter whilst she undergoes this treatment – what alternative do I have? We need DLA and Carers allowance in order to achieve this.
6 Responses
It makes my blood boil that the government continually punishes the families that genuinely need the help to see them through an unavoidable situation. How I wish I was Prime Minister…the welfare system does need to be reformed, but with common sense and compassion that does not penalise the hard working members of society who are in genuine need. xxx
for such a common (relatively) thing, that has such a big impact, I am amazed that there is not more obvious support
Hi, found your blog through the twitterverse and I am an English teacher with a daughter called Erin! This post has had two big effects on me. Firstly it’s made me remember how lucky we are but it’s also made me so angry! It’s amazing that there isn’t more obvious support. My husband has worked in the car industry for some time and it’s impossible to underestimate how essential these allowances are- it’s such backwards thinking! Thank you for writing this.
I’ve held off commenting on any of the reform posts because I’m fully behind the deserving individuals and their families who get DLA but also I have seen the flip side of the coin through my work and I can promise you that the system NEEDS this review to tackle not only the fraud (of which there is much more than the government care to admit), but also to look at the types of disabilities claimed for and their severities.
Thanks so much for writing this and sending it in to the carnival. I’ll get you the links to the rest of the posts hopefully tomorrow if you want to add them.