A whimper not a bang

April has started with a whimper not a bang, strangled by greyness, crippled by cold and compounded by welfare, death and orphanages. That’s what the view from the hill looked like this week.

Maybe I should stop following the news, switch off twitter and bury my head in fiction and films. Maybe I should stop running and try slow walking, take a long bath rather than a quick shower and fill my days crocheting, gardening or baking. After all it might do as much good as looking at the world and watching things get worse. Continue reading

We can’t hear the parents

 

All of my daughter’s life I have fought hard to make her life the best it can be. This has taken me from being a laid back individual to the verge of a nervous breakdown and back. I have in my time been labelled neurotic, challenging, difficult, over-protective, pushy, demanding and unrealistic. At times, I may have been some of these things. I do not apologise. And I know, despite the fact we are now quite settled and work well with the professionals around her, I would not be afraid to fight for her should the need arise again. Yesterday we heard that parents of young people in Winterbourne View were amongst the most disenfranchised parents in the country. How did that happen? Continue reading

A Light Touch

For the last 18 months I have been delivering a short talk on the transformative power of personal health budgets. In the same way that has happened in social care it is now possible to have a personal health budget instead of more traditional services like residential or agency care.

The reception has generally been warm. But within every room are the hardline doubters. You can usually spot them at the beginning: arms folded, huddled together, frowning faces.

After the talk come the questions. With recurring inevitability the first question will be regarding financial accountability. Continue reading

Acronyms in Welfare….

Acronyms in Welfare….

Have you ever wondered why we parents of disabled children feel as if we are in a fug of confusion, absent minded to the point of distraction.

Do you, like me, constantly mislay mobiles, leave keys in the door and leave the dog parked outside shops, walking away with the bananas you went in for but only remembering you have forgotten the dog when you get home?

Continue reading