Quote:
Originally Posted by Taf
It can get so bad that even respite is refused as "there is no-one qualified to care for your child". And that is just one excuse we have been given during our 23 years of requesting any form of respite for our twins.
And life hasn't got any easier as they have grown into young adults. 
I had a phonecall a couple of days ago for the "urgent" return of my daughter's ESA reassessment forms. Forms I only received a week before. Another hoop to jump through yet again. |
Agree 100%. I still don't know hope you cope without respite Taff but I know you're doing a great job so every credit to you.
You're quite right about all the hoops - as the kids grow older, the desire to 'protect' their 'rights', in many cases adds greatly to the burden of looking after them. It's bizarre really because, as we've seen all too often in places like Rotherham, putting kids in 'care' isn't a guarantee of real care at all (far from it) yet parents are being increasingly pushed down this route by the onerous responsibilities being placed upon them by well intentioned (I'd like to think) people who haven't got a clue just how hard it is to care for a disabled child/young adult/adult.
We were told that respite care locally for for kids with complex needs costs c. £350 per night. Compare that to the pittance the carers get and you see how much of a false economy deterring carers from caring is.