Yahoo! Mail - tdlhillier@yahoo.com.au

Dear sirs,
do you remember the death of this mum and her disabled son?
http://news.independent.co.uk/uk/this_britain/article359122.ece

right now we understand her feelings entirely!
We have adopted children with disabilities. We also have two home grown children. By choice and without regret we have both given up paid work and devoted our lives to ensuring we meet the needs of our children to the best of our ability. Three of our children hve complex disabilities and life threatenng health issues.

On paper the children have rights, on paper we have rights as carers, on paper every child matters, on paper every disabled child should matter too, on paper meeting the needs of a disabled person shoud tak into consideration the needs of the other members of the family, on paper in considering meeting the needs of a disabled person their views and the views of their carers should be taken into consideration. In practice this doesn't happen, in practice the views of people with no idea of need is taken into account, in practce a families urgent need is left unmet whilst the "professionals" try time and again to save money rather than actually consider what would be in the best interest of the children and their family. In Practice we wake in the morning to discover our daughters bedrom is 7 dgrees, in practice our two disabled daughters and our two home grown children have had chest problems for weeks on end, the doctor wonders if the lack of heating is a cause? In practice after a year of discussing and arguing and pretending they are listening they have now done a total about turn and decided the plans we told them were an unnacceptable risk are now being considered again, the plans we had drawn that actually meet the need are tossed aside becuase they will not consider the needs of the four disabled persons in the house individually and adequately meet each need. they have the power to use up to 4 DFGs but instead will only consider one...trying to meet the needs of 4 with a one size fits all adaptation rather than consider what is actualy best.
I am so tired of fighting, so tired of being not listened to. Life is not fair...I know and accept that but a break now and again wih the continuous fighting would be good.

Sorry, my thoughts were inerupted by a phone call from the OT manager. sh understands my frustration! She thinks we should get round the negotiating table again and come to a compromise. How can we compromise on what we blieve to be the minimum we need to continue to care?

Thanks for listening!