The local council of the London borough of Hillingdon acted illegally in detaining 21-year-old Steven Neary for a year in a care unit, rather than allowing him to live with his father, Mark Neary. As the Guardian reports, Steven Neary’s human rights were breached after authorities at Hillingdon refused to let him return home after what his father had thought was a temporary stay at the care unit in December of 2009.
The judge ruled that Hillingdon had failed to comply with legal safeguards in according with the Mental Capacity Act 2005. Hillingdon had instead used “a code designed to protect the liberty of vulnerable people… as an instrument of confinement,” the judge ruled.
Steven Neary, who is autistic, requires — like my teenage autistic son Charlie — adult supervision at all times. Until December of 2009, his father and council-funded day carers had provided this. At Christmas in 2009, Mark Neary was “unwell and exhausted” and agreed to have Steven placed in a positive behavior unit for what he thought was “a couple of weeks.” He expected that Steven would return home in January of 2010 at the latest but instead he remained at the unit until December of 2010 after a court order. The Guardian points out how Mark Neary’s rights and concerns as a parent, not to mention Steven’s own wishes for his care, were routinely disregarded.
Though he was “necessarily critical” of Hillingdon, said the judge, everybody concerned “genuinely wanted to do the right thing”, and problems arose “from misjudgment, not from lack of commitment”.
But the case “was characterised either by an absence of decision-making or by a disorganised situation where nobody was truly in charge, and it was consequently possible for nobody to take responsibility”, said the judge….
Nowhere in Hillingdon’s records of his year in care was there mention of the “supposition he should be at home, other things being equal, or the disadvantages to him of living away from his family”.
“No acknowledgement ever appears of the unique bond between Steven and his father” or the “priceless importance” of being cared for by a parent rather than strangers, and no attempt was made to carry out a genuinely balanced best-interest assessment, said the judge.
A couple of years ago, my son’s then-teacher — on the advising of our school district’s outside behavior consultant, we think — urged us to consider a “temporary residential placement” for Charlie at Bancroft Neurohealth in south Jersey. While some speak highly of the facility, it was where a 14-year-old autistic child, Matthew Goodman, died in February of 2002; his mother, Janice Roach, thinks that Bancroft’s use of restraints and sedation contributed to his death. Bancroft was fined $127,000 for violating laws meant to protect those housed in an institution; at the time, this was the largest fine ever given to a long-time care facility in the state of New Jersey.
At the time we were being urged to consider Bancroft, own son was going through a lot of difficult behavioral challenges that had led to the school district insisting on him wearing a helmet with a face guard. But we were aghast that they would think of placing Charlie at Bancroft, which is located on the other side of New Jersey. When we informed the school district and the behavioral consultant that we did not think this was an appropriate placement for Charlie, we received a similar response as Mark Neary did from Hillingdon, that something was wrong with us, that we were blind to the reality that we could not take care of our own child anymore and that Bancroft would be “better” for Charlie.
As Charlie has very little language, he would not be able to tell us if he were abused. As a recent BBC Panorama investigation of Winterbourne (a private care hospital in Bristol in the UK) illustrates all too clearly, terrible abuses are going on right now on individuals with disabilities. Joe Casey went undercover as a careworker working 12 – hour shifts for about $497/week. He filmed near-daily abuse — it looks like torture, really — of disabled residents at Winterbourne:
[18-year=old] Simone was the recipient of the worst of the abuse that I witnessed, including being doused in water while fully clothed and later being taken outside on a cold March day where she lay shivering on the ground.
It was a day that ended with the water from the vase of flowers that her parents had given her on a visit being poured over her head as she screamed on her bedroom floor.
She was then taken into the bathroom for a second shower fully clothed and had mouthwash poured over her.
I have to say it, reading that last sentence made me physically queasy.
As Mark and Steven Nearys’ case underscores, parents who say they want to take care of their disabled children — and, yes, of children with serious behavioral challenges (biting, putting holes in walls, if you’d like me to get specific) — have the right to do so. We do need support from care workers, therapists and others but the best place for our children is not in institutions but at home, where those who love them can make sure they are being cared for.
The video below is part of the BBC’s investigation.
Take action and sign the petition to Prevent Abuse of Adults with Autism and Other Disabilities!
Related Care2 Coverage
Photo of Institution for people with mental disabilities Demir Kapija, Macedonia by Yana Buhrer Tavanier.