[Margaret Pilkington]

Magpie, you beat me to it.
Yes, for these parents there are no days off, no Holidays, no pensions schemes.
And before you ask about the benefits these parents may be entitled to collect.....if it was worked out, then it would still be cheaper than putting these children into intstitutionalised care(which is what used to happen)...after all this kind of care needs buildings to be bought and paid for, staff to run them(on a 2 or 3 shift system, so that the carers get some time off)Utilities to be paid for, maintenance of buildings, training for staff to keep up their competences......do I need to elaborate more?

When I was training, I worked on the Childrens Ward at QPH.....we took disabled children for respite care.So that their parents could take a two week holiday. Looking after them was very hard work.....they needed to be fed, toileted(nappies changed bottoms washed....and these were 10 years and 12 years old) dressed and kept safe.
Could you do this for 27/7....50 weeks of the year? even for someone you loved?

Their parents obviously loved them but they never ever got a full nights sleep, or a meal in peace while the children were home. For two weeks we gave them that luxury...two weeks per year.....is that too much to ask?

I know this is a major thread wander, but it is relevant to the topic...unless you deem it otherwise of course.