#7DaysOfAction-Guest Post by Mark Neary
Several days ago, we were alerted to this petition about the outrageous and state sanctioned abuse of a young autistic man in the UK who was being kept from his home, his family and community. Our moderators are largely North American and Australian based, but we wanted to know more about this. As it turned out, our friends in the UK said this is not an uncommon thing to happen to disabled people in crisis in the UK. We wanted to bring attention to this with a guest post on our blog from disability advocate and parent, Mark Neary:
TW: Abuse, institutionalization, ableism
Seven Days of Action by Mark Neary
A few weeks ago, I was invited to join a social media group that had been set up by the relatives of people with learning disabilities that are currently trapped in Assessment & Treatment Units. This issue hits a painful nerve for me because 6 years ago, my son went for 3 three days respite as I was unwell and it took 358 days to get him back home again. Only then and the intervention of a High Court Judge who declared that for the whole year, Steven had been unlawfully detained and his Article 5 & Article 8 Human Rights had been breached.
The families had reached desperation point. All the official channels for challenging the detention remained sealed. We knew that a big push was needed if their sons and daughters were ever to make it back home. Hence, the campaign “7 Days of Action” was started on 18th April 2016. The aim of the campaign is to raise public awareness of the kinds of impoverished lives lived by the learning disabled people in these Units. Ultimately, the aim is to bring pressure to bear on the decision makers and to bring these good people home. They haven’t committed any crime. In most cases, they don’t have a diagnosed mental health condition. They are there because they are learning disabled and the State doesn’t want to fund a life for them in their own homes.
You may be asking, what is an Assessment & Treatment Unit. It’s a good question. One thing is for sure through the evidence of the campaign is that neither assessment, nor treatment takes place there. They are holding pens. Warehouses for people who the State is not prepared to fund home care for. Whilst someone is in an ATU, the cost is normally bore by the NHS. The Local Authority and the Local Clinical Commissioning Groups don’t have to pay a penny. And there is the rub. When it is time for the person to be discharged, neither of the aforementioned groups is in a hurry to pick up the cost of providing the care and the person is left to vegetate in the ATU.
Here are some alarming ATU facts and figures:
As of 30th September 2015 there were exactly 3,000 people in specialist learning disability inpatient services.
According to their care plan, 950 people (32%) do not need inpatient care.
1,300 people (43%) had been in their current service between 1 and 5 years
895 people (30%) had been continuously in these services for 5 years or more
1,225 people (43%) were in an inpatient service more than 50km from their home.
The average weekly cost per person of an ATU placement is £3563
2,155 people (72%) were given antipsychotic medication in the 28 days before the census date.
Seven Days of Action believes that it is important for the human stories behind these figures to be told. So, over the seven days, seven stories will be told and published on the blog each day.
Stories like Eden, who is now entering his 8th year in an ATU. Eden has gained 16 stone in weight in those 8 years due to the heavy doses of anti-psychotic medication he is injected with weekly. He is fed his food through a hatch.
Stories like Robert, who is 250 miles from his home. Even the Responsible Clinician in Robert’s case is supporting his move back home but the Local Authority is not prepared to fund it.
Stories like Tianze, who was moved from Scotland to England. His family moved home to be near him and then the commissioners moved him again. Since being in the ATU, Tianze has started self-harming and he is repeatedly subjected to prone restraint.
Stories like Stephen, who has now been away from home for five years. His family were recently blocked from hiring a respected psychologist to offer a second opinion on Stephen’s care.
Stories like Jack, who regularly gets anxious about his home leave being cancelled, which leads to his home leave being cancelled.
Stories like Chris. 5 years ago a High Court Judge ordered his Local Authority to provide a home care plan for Chris but it took a further five years for Chris to return home.
Stories like Thomas, who died in an ATU in 2015. His mother had made repeated, desperate attempts for the Unit to arrange medical treatment for Thomas. Her calls were ignored and Thomas died.
Where are the Human Rights of these seven guys and the other 2993 people currently detained in Assessment & Treatment Units? It is easy to overlook this when learning disabled people are viewed as not quite human.
Recently, most of the British reported on their front pages the story of a dog that had been held in appalling conditions by its owner for two years.
Eden’s story will probably not make the front pages.
Or you can follow the campaign on Twitter at #7Daysofaction
Thank you for your support.
Posted on April 18, 2016, in Parenting Autistic Children with Love and Acceptance. Bookmark the permalink. Leave a comment.