My autistic son has the right to family life!
My autistic son has the right to family life!
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Who am I?*
I have a son who has autism and learning disabilities. Five years ago when he was 16 years old, he was sectioned and placed in a hospital about 5 -6 hours driving distance from his home.
We only thought he would be gone a few weeks and it has been years. He is traumatised by being away from home. He has developed self harming behaviour in hospital. He has been regularly restrained and secluded, which has caused lots of injuries to himself.
We know that he doesn't exhibit any challenging behaviours, which has been confirmed by over 200 times short controlled home visits now since 2016. He is so much happier once he is home with us.
My son has been out of hospital since June 2018 and is in supported living now in the community, however, with hospital model care still in place. Despite support from professionals, and his own desperate desire to be back home living with us, there is a dispute with the Clinical Commissioning Group and the case has been referred to the Court of Protection to make a decision about his best interests. They also set strict restrictions on our family contact time. He can't have even an additional few minutes longer with us - sometimes when he is halfway through eating dinner at our family home, staff will take away his dinner plate before he has finished as the visit is officially over. It feels like psychological torture for us and we believe it is for him too. He still regularly being restrained on the floor and sedated. He constantly has unexplained injury marks in his body as well. We don't feel that he is safe to live in a the community like this that similar like another hospital.
The CCG believes that our son needs routine because he has autism. But being autistic shouldn't mean you are excluded from family life: that is a basic human right.
Currently, the CCG has spent large amounts on his care team, which is 12 staff team. We believe it will save public money if he can return back to live with us. We need to make the human rights arguments to the court
How much we are raising and why?
We need a solicitor and barrister to put our case to court. The CCG has a legal team and it feels unfair to fight this on our own. We need help to navigate the legal system and understand all of the evidence.
Currently, we can't get legal aid. Despite the fact that we have lost a lot of earnings fighting the case in the court and that we are lower income family.
My solicitor has forecasted significant further costs. The final hearing will be 4 days, which would need involvement of a solicitor and barrister. In addition, I need to pay lots of the cost of an independent experts assessment.
We can't afford the legal costs, so we're asking everybody who cares about this issue to make a little contribution. my son lacks capacity to instruct a solicitor but one has been appointed on his behalf
This isn't just about my son.
I recently watched BBC1 Panorama's "Undercover Hospital Abuse Scandal". The documentary shows that this scandal is carrying on in many hospitals and it can happen to anybody, even in the supported living places.
"Panorama goes undercover inside a hospital for vulnerable adults and reveals patients being mocked, taunted and intimidated by abusive staff. In shocking footage, reporter Olivia Davies films patients with autism and learning difficulties being deliberately provoked by staff who then physically restrain them. The Panorama investigation comes eight years after the programme exposed the scandal of abuse at Winterbourne View, another specialist hospital. Then, the government promised to reform care for the most vulnerable. Now they stand accused of failing to keep that promise by families, campaigners and whistle-blowers.’"
This documentary an our son's case shows that we need justice for autistic people's human rights in hospitals and community care! We hope my son's case can shed more light on this important issue and benefit other autistic people and children in their care in the community.
We want disabled people and their families to have more choices over their life and their care and for them to be able to enjoy their family life, as is a basic human right.
*I can't disclose my name or my son's name here on account of a court order.
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