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How can work, work?

As my children get older and school looms on the horizon for the youngest my thoughts frequently turn to returning to the world of work. I haven’t had employment since taking voluntary redundancy whilst on maternity leave with J. It was one of the few good things to come out of having our first child as the credit crunch hit and gave me the opportunity, that we otherwise would not have been able to afford, to be a stay at home Mum. As it turned out this was incredibly fortunate,  with no recognition of his disability until age 2 J may have been badly impacted upon by being placed in child care. As a passive, contented and non mobile child who wasn’t recognised as having additional needs he could have easily received far less attention than he needed. Rather than intense (desperate) all day interaction he got from me. So I must make it clear from the beginning am ever grateful for the fact that I had the opportunity to choose not have paid employment!

Fast forward some years and situation has changed,  financially we do need me to work and once our youngest child is at school I really don’t need to be home all day. But what to do?

So I began making a list of the working conditions that would be essential for our family unit to function and that’s when I realised that there would be practically no jobs out there that would fit the way our family’s life is structured around the needs of J.

1) Common to all parents of a child with a disability we need to have time off to fit around appointments;  appointments that are not always easy to rearrange without hugely increasing waiting times. Any employer would need to be flexible enough to allow you to swap shifts or make up hours at other times, simple in theory but when it’s several times a month many workplaces would not be impressed.

2) Our son travels some distance to school on local authority transport provision.  He loves his bus journey. His driver and escort are an important part of his day and he just adores them. Yes, there’s a but coming now, BUT the transport rules state that a child may only be picked up and dropped off at their home address and that transport will only be available at the end of teaching time and that transport won’t be provided to allow access to after school clubs or wrap around care. So in a nutshell someone has to be at your home address to meet them.

So now you have several options: you  could consider a childminder, but are they going to want to traipse out to your home with any other children that they’re minding and wait on the pavement for the bus to arrive?
You could use any direct payments you might receive to pay a Personal Assistant to be home to meet your child but social services will tell you that direct payments are for respite, not to allow you to work.
You could employ a nanny, but let’s face it the cost of that is going to be prohibitively expensive for most of us.
Ask your parents. There must be many many grandparents pressed into this role, who help for their children’s sake. How many of them reluctantly or at the expense of more pleasurable grandparent/grandchild time?
Hmmmmm, what’s left? Not much eh?

3) The summer holidays. Now, I know that all working parents have problems arranging child care for the summer, but on top of the normal issues when you have a child with a disability you have to consider all the following. There are no or few play schemes/activity camps for your child,  those that existed have reduced significantly due to recent budget cuts. If your child has significant additional needs it’s not that easy to arrange grandparent or family friend cover, much as they may adore your child they may just not be equipped to cope with them on their own for long stretches of time. Back to having a nanny being the only option again then.

So after consideration of all of these and feeling slightly despairing about the restricted options. My conclusion? Well two choices:

Hire a nanny


Find a job which can be very flexible about appointments,  where I can be home by 4pm and work term time only.

Any ideas?

The problem as I see it is that it is cheaper to pay me (and many others like me )the paultry Carer’s Allowance of £59.75 a week, than it is to address these issues nationally and create working practices that allow parents in our situation the opportunity to work. The fact that they stop paying you any Carer’s allowance if you earn £5200 a year shows the monetary value attached to the work carers carry out. Work that fits the needs of the family for parents in our situation is complicated and hard to come by, so far our society has chosen to solve this problem by paying a tiny benefit rather than finding ways in which parents of disabled children can be supported to make employment possible.

I put it to the Government that some honesty is needed here. You say you want everyone to work who can work, you need to ‘fess up and say that this excludes certain groups of people who you’d rather stayed at home because it costs less. But that wouldn’t make a very good soundbite would it? I imagine some of the stalwart Tory voters might not really warm to the idea of encouraging people to stay on benefits. And then people might start asking for things to change, and we wouldn’t want that now would we?


One thought on “How can work, work?

  1. Pingback: Working with a disabled child | SWAN UK

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