Friday, November 14, 2014

Institutional care for children with special-needs: how it can look when it goes very badly

From the BBC report: From the outside, little about this European
institutional facility gives away the appalling realities within
From the outset, The Malki Foundation has sought to empower the families (chiefly the parents) of children with serious disabilities in Israel.

That's at the core of the mission we set for ourselves in 2001. From a distance, and we know this from many conversations, there is a widely-held view that Israel - of all countries - has an outlook on the care of special-needs children that we can all be proud of.

Without entering into a debate on that, we who founded the organization know there is much that can and ought to be done to make the situation very much better. Our way is to focus on the families.

The Malki Foundation's three programs are calibrated to do what we can to empower them to make the decisions about their children's care that only families should be entitled to make. In particular, we are determined to do as much as possible so that no family ever feels it has no viable option other than to hand its child over to institutional care, whether government-run or belonging to one of the numerous Israeli not-for-profit organizations that operate such facilities. (And yes, we are very open to different viewpoints and will be glad to provide a forum for them here.)

So how does it work in places where it works really badly? The BBC's website this week published a startling look into very bad practices as they affect special-needs children and institutionalized care in a particular part of Europe. The page on which it appears informs readers that
Chloe Hadjimatheou's report can be heard on World Update on the BBC World Service from 10:00 GMT on Friday 14 November
As food for thought, here are some extracts from the BBC article, called "The disabled children locked up in cages":

Nine-year-old Jenny stands and rocks backwards and forwards, staring through the bars of a wooden cage. When the door is unlocked she jumps down on to the stone floor and wraps her arms tightly around the nurse. But a few minutes later she allows herself to be locked back in again without a fuss. She is used to her cage. It's been her home since she was two years old.

Jenny, who has been diagnosed with autism, lives in a state-run institution for disabled children in Lechaina, a small town in the south of Greece, along with more than 60 others, many of whom are locked in cells or cages.

Fotis, who is in his twenties and has Down's syndrome, sleeps in a small cell separated from the other residents by ceiling-high wooden bars and a locked gate. His cell is furnished only with a single bed. There are no personal possessions in sight anywhere in the centre.

"Are we going on a trip?" is this wiry young man's hopeful refrain whenever he sees anyone new. But with barely six members of staff caring for more than 65 residents there is rarely an opportunity to leave the centre.

In the small staff room, an array of closed circuit TV screens flicker, permanently tuned into the large wooden boxes that dominate the upstairs rooms.

The poor conditions first came to the attention of the authorities five years ago when a group of European graduates spent several months at the centre as volunteers. Catarina Neves, a Portuguese psychology graduate was among them.

"On the first day there I was completely shocked… I could never have imagined that we would have this situation in a modern European country but I was even more surprised that the staff were behaving like it was normal," she says.

The volunteers wrote up their experiences in a document that they sent to politicians, European Union officials, and every human rights and disability rights organisation they could find. Occasionally they received replies thanking them for their email without any promise of action but mostly they were ignored.

Then in 2010 the volunteers' testimony came to the attention of the Greek ombudsman for the rights of the child who visited the centre and published a damning report in which he highlighted, "the degrading living conditions… the deprivation of care and support provided, the use of sedating medication, children being strapped to their beds, the use of wooden cage-beds for children with learning disabilities, the electronic surveillance, as well as the fact that such practices constitute violations of human rights."

He also referred to the fact that there had been several deaths at the centre due to a lack of supervision. A 15-year-old died in 2006 after choking on an object he had accidentally swallowed. Ten months later when a 16-year-old died, the post-mortem examination revealed his stomach was full of pieces of fabric, thread and bandages. It was after these incidents that management of the centre decided that the staffing levels made it impossible to protect the children from harm. Their solution was to have the cages custom built for the residents.

However the ombudsman's report concluded that the cages and any practices employing long-term restraints "are clearly illegal and are in direct contradiction with the obligation for respect and protection of the human rights of the residents," and he urged the Greek government to take immediate steps to rectify the situation. But after almost five years the only changes are superficial.

Some of the wooden bars have been painted and funding was found to turn the day room into a soft-play area - but there is still no-one to engage with the residents, who sit alone in the room on plastic mats rocking and staring at the walls while an assistant watches from the doorway. There is only one nurse and one assistant per floor responsible for more than 20 residents - there is no permanent doctor at the centre. When residents need to go to hospital, they are accompanied by one of the nurses which means more than 20 residents are left in the care of just one person.

"On a nightshift I was often left alone with three assistants, who are not even nurses, to care for more than 60 patients. If there were any medical problems with the children there was no one to ask for help except God," says a senior nurse who recently retired from the centre and spoke to the BBC on condition of anonymity.

She says the cages were necessary. "We fought to have those caged beds built to give the children more freedom. Before that the residents were permanently tied by their arms and legs to their beds.

"Anyway, the children are used to them now. They like them."

Local doctor George Gotis who has been volunteering his services at the centre for more than two decades also sees the cages in a positive light. "I believe this is one of the best institutions for disabled children not only Greece but in Europe," he says. "Many of these profoundly disabled children have lasted far beyond their average life expectancy and these expensive caged beds, which were built to help protect them from injuring themselves, have played a big role in that..."

The director says only the very basic needs of the children can be covered by her staff. In one shift a nurse and assistant have to change the nappies of more than 20 residents, hose them down, spoon feed them and medicate them. "We are doing everything we can but we do not have the resources to give anything else," says Tsoukala. "More than two thirds of these children have been abandoned by their families and we do not have the time to give them the emotional support we would like, nor to give them the individual care they deserve."

But arguing that the cages are there for the safety of the children is wrong, says Steven Allen, of The Mental Disability Advocacy Center (MDAC) - an international human rights organisation for people with mental disabilities.

"The cages are there to protect the staff not the children," he says. "They are based on a model of care that is about coercion, restriction and making people with disabilities easy to manage, not treating them as human beings with rights.

"Being kept in a cage is seriously detrimental to the psychological health of patients, has no therapeutic value and can actually be physically dangerous. There have been cases [elsewhere] where the bars of cages have fallen on to patients and killed them," he says...

Israel is not Greece. And institutionalized residential facilities vary - sometimes greatly - from place to place. But from our experience, the self-defensive arguments presented above are heard in Israel no less than elsewhere, and with as little justification.

Frimet Roth, who co-founderd The Malki Foundation with her husband in 2001, has shown in several published articles (among them "Israel’s hidden underclass", Jewish Journal of Los Angeles, July 17, 2013; "Institutionalization isn't the answer", Jerusalem Post, June 28, 2006; "A survey and the sad story it tells", Times of Israel, March 2, 2014], how important and under-addressed the issues are.

Here at the Malki Foundation, we do not engage in straight-forward advocacy, preferring to simply get on with helping people in practical ways. But readers can take for granted that much of what we see daily, in our encounters with families from every part of Israel's socio-economic and religious/ethnic spectrum, reinforces the view that there remains much that can be done to radically improve Israel's approach to its disabled population, and to those who care for them.

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