Institutions cannot improve

Alphia Abdikeeva, CIDH Pro Igual

A piece of news caught my attention recently: conditions in Bulgarian institutions for children with disabilities have improved following a damning report on human rights abuses there. Well, it´s good to know. But I cannot shake off a nagging feeling: is it good news or bad news that the institutions have “improved”, if they still exist?

The institution, by its nature, creates two classes of beings: one in the position of power, and the other powerless. And we all know that power corrupts, especially such absolute and unchecked power that the staff of the residential institution usually have over vulnerable people in their “care.”

Last year, the report by the Bulgarian Helsinki Committee revealed that hundreds of deaths of children with mental and physical disabilities took place due to appalling lack of care, staff negligence and even physical abuse in the state-run “care homes”. Now, we are told, somebody is actually giving these children food and checks their medications. Deaths in the care homes will now be more thoroughly investigated and surprise official inspections are supposed to prevent abusive practices. So we are told.

But we have also been told by the Bulgarian government that all residential institutions for people with mental and other disabilities would be closed down by 2014 and replaced by community-based supports. So, why hasn´t the government closed the “care homes” as soon as their horrendous practices came to light? Why (and how) exactly have their conditions improved? Have the authorities put material resources – surely not unlimited – into the institutions to “improve” them? If so, what of the pledge to close down the institutions?

And just before someone brings up the “our country is poor” argument for not switching to community-based services, it is utterly disingenuous to claim that the level of economic development of a country has anything to do with the treatment in the institution. (Not to mention that community-based services may actually be less costly than institutions.) The most recent undercover media investigation in a UK care home has convincingly demonstrated that even in that prosperous country, with centuries of humanist values, the situation of institutionalized people is not that different from a situation in an impoverished or “transition” country. It is the very nature of the institution that makes abuse not only possible but almost inevitable.

So, rejoice not that the conditions in the Bulgarian institutions have “improved”, because just about anything would qualify as an “improvement” in a place where children were starved, abused and neglected to death. Rather, keep asking — when will the last institution be closed down, in Bulgaria and elsewhere? Institutions simply cannot “improve”!

And some more horror stories

By Alphia Abdikeeva, CIDH ProIgual

Upon recently reading the piece How Many More Horror Stories Do We Need to Hear and watching the clip that accompanies it, I felt big, walnut-sized goosebumps on the skin. A good Spanish word “escalofriante” describes well the emotion.

The article was written by Judith Klein, a long-time colleague and friend of mine. She directs the Mental Health Initiative (MHI) program at Open Society Institute, the program that for years has been advocating for deinstitutionalization of people with mental disabilities and providing community-based services that allow their integration in society.

I personally learned about the issue of rampant institutionalization and abuse of human rights of people with mental disabilities just a few years ago, when the report on cagebeds by Mental Disability Advocacy Center (MDAC) came out.

At that time I honestly thought that following the damning MDAC publication things would change immediately, because it was a national embarrassment for each and every country involved. Since it was news to me and that was my human reaction, I really believed that everyone who just learned about the cagebeds for the first time would also react this way. Especially people in power — they tend to be cockiest about their country´s reputation.

Apparently not. Apparently bureaucrats already know all about it, but continue maintaining and financing establishments where atrocities like cagebeds are possible. And so we continue hearing horror stories of institutional abuse of people with mental disabilities.

There are many vulnerable groups out there: women; refugees; elderly; prison inmates; marginalized ethnic, religious or sexual minorities. Sometimes, when the proverbial  last straw breaks their back, so-to-say, they at least can collectively protest or riot to get attention to their plight and to negotiate improvements in their condition. But institutional inmates with mental disabilities do not even have this last resort.

Unfortunately, my guess is there will be many, many more horror stories to come. But I think, no matter how disturbing, they should keep coming to light. Somebody has got to stir up public and bureaucratic feelings. So that if not out of elementary human compassion, then at least out of professional embarrassment — and possible sanctions — people in a position to do something about deinstitutionalization would act.

Cutting some budgets may be a good thing

Alphia Abdikeeva, CIDH Pro Igual

Budget deficit and impending cuts, most commonly in public sector, are on the news every day. There is a lot of uncertainty about who will be affected and to what extent. But usually there is understanding that budget cuts are a bad thing. But I keep thinking about one human rights report I had a chance to edit last year, about the mental health care budget in Romania. That report made me think differently about certain budget cuts.

The report was written by the Institute for Public Policy (IPP) and among other things it presented some figures about the costs of running institutions versus community-based services for people with disabilities. Contrary to popular beliefs, community-based services are not more expensive than institutions-based services. Actually, community-based services are sometimes several times cheaper (sic!) than institutional ones. And as to the outcomes, one need not be an expert to figure out that life in closed, remote institutions can turn even a healthy person into a wreck.

Many people in Eastern Europe dread of a possibility to end up in some nursing home when they are old, and certainly would not choose to live there. People in Eastern Europe also often take pity on orphans or abandoned children who end up in institutions, again because people have a pretty good idea of what is happening inside. Life in institutions can be especially devastating for people with disabilities, especially mental or developmental, who do not even have that choice of where to be. The IPP report referred to dozens of unexplained deaths of patients in Romanian institutions.

But what did strike me most was that  if the data on comparative costs were available to the government (and they surely were in case of Romania), how come the government did not immediately jump at an opportunity to save money by starting to switch to community-based services? Wouldn´t it be a rational thing to do? Even in a healthy economy, there are always areas that badly lack funding. Ways to redistribute funding from wasteful and inefficient projects to cost-efficient and necessary ones, seems to me, should always be on the government radar. Perhaps, there are some other concerns that I do not understand, like public dislike of the idea. But that surely cannot and should not trump rational cost-efficiency (not even mentioning humane) considerations. Or am I still missing something?

In any event, there are now budget cuts on the agenda in Romania, Bulgaria, Hungary, and other countries badly affected by the current economic crisis. Perhaps, the governments — with a bit of help from NGOs — should seize on it as an opportunity in disguise for deinstitutionalization. Then, if done wisely, the budget cuts can actually turn out to be a good thing leading to the closure of expensive and ineffective institutions for people with disabilities and/or mental health problems and the shift towards community-based services and care.

Intelligence is a subjective matter

Alphia Abdikeeva, CIDH Pro Igual

It is interesting to read definitions of intellectual disability. They are vague and conditional.Perhaps, rightly so. Deciding who is intelligent and who is not, who is capable and who is not, is after all a very subjective matter.

I have met some minority children with Down´s syndrome and other specificities that professionals would define as intellectual disabilities. Being from families where two (or more) languages were routinely spoken at home, these children grew up bilingual. A bilingual person with an intellectual disability defies any definition. How many so-called “normal” people in the US, UK, Spain, or other country with a widely spoken language ever master a second language? So, who is disabled then?

The other day I had an urgent post delivery. It was brought by a man whom professionals would also define as having an intellectual disability. However, he has a paid job (a postal carrier), he drove a vehicle (which means he had passed a test to get a driving licence, which is more than I managed, with my academic degrees). In short, he is a full member of society, which chose to include him, support him, and which benefits from his social inclusion (in the form of taxes, work product, and non-expenditure on institutional and other costs), as much as he does.

What a contrast to countries in Eastern Europe where abandoned children are institutionalised and often are neglected to the point that they do not master elementary skills, which puts their development on the level with those who were born with inherent developmental disabilities. Then the states pay for this neglect with life-long disability pensions. And it hurts to think that just a portion of the money some states spend on keeping people with disabilities locked up, where they are invisible, unwanted and abused, could be enough to support them to become rightful, contributing members of society.