'Who will champion our children when we have gone?' & 'I would feel such relief if they could die before me.' – Parents' comments at a Bringing Us Together event (England)
In response to a recent parent led campaign called #Justice for LB bringing hundreds of parents together when a young man with autism needlessly died in an assessment unit (http://107daysofaction.wordpress.com/ ), Bringing Us Together organised a day event for families in the north of England.
One of the hardest hitting comments on the day was:
'What happens to my young disabled adult when I die?'
- which then led to other comments such as:
'I would feel such relief if they could die before me. But, we carry on fighting for their rights, to be listened to and to have the best healthy life possible – and to have the best opportunities whilst they are alive.'
and:
'Who will champion our children when we have gone?'
But the fear goes beyond us not being around to being scared that even when we are here, alive and kicking, that decisions will be made by people who don't understand our young people without our involvement.
A new website has been created http://lbbill.wordpress.com/ and a facebook page with the idea of a new Bill that aims to shift the power into the hands of the disabled person and their families, so in the future, if the State decides the person cannot live in their own home, they must seek court permission to carry out their plan.
We hope this law will also help all those people currently trapped in institutions as a means of being released from their detention, into a home of their own. (See Mark Neary: http://markneary1dotcom1.wordpress.com/ )
Bringing Us Together feels that this area of the Mental Capacity Act, families understanding the law, and preventing the triggers of families going through crisis resulting in inappropriate provision needs to be researched and highlighted.
Bringing Us Together is a parent led organisation working with families with disabled children, young people and adults. We are passionate about making the world a better place for our children and our children's children. We are an independent and proactive community championing the voices of disabled children, young people and their families
Bringing Us Together believes that doing things together, understanding our rights and listening to family members, carers, and their young people keeps our disabled children safe, near to home and leading purposeful lives. We don't want disabled young people going into crisis, we don't want them going into assessment units miles away from their families, and we don't want our children growing up in a world full of discrimination and prejudice.
Our children live on the margins of society and the families face isolation. Instead we want to highlight what good looks like and for that to be the norm.
For more information on Bringing Us Together contact:
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Tel 01422 341578
