On institutions and getting your life back

From the New York Times article quoted below

How nice. We have our own month.

This year’s theme for National Family Caregivers Month, November 2018, is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. This is mine:

Galvanize and supercharge the public. Enlist them as supporters of home care.

So here goes.

To those living in countries like mine, where the institutionalization of people with disabilities remains a flourishing business: You may be among those swayed by the propaganda disseminated by our local institutions. You may now be convinced that they are indispensable; that people with disabilities could not survive – or would suffer - without them.

And I don't blame you. You are in good company. Most of our fellow citizens have succumbed to the contention that the residents of our large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above is a far cry from the truth.

I called a hotline recently opened by the largest chain of large institutions in my country. I posed as a parent who is considering institutionalizing her daughter with disabilities, urged on by her husband but very reluctant to take the step.

The staff member who answered my call immediately assuaged my concerns about the negative effects of institutionalization which I told her I’d read about.

She reassured me that I would “remain my daughter’s parent” since I would be free to visit her whenever I choose to. To reinforce that, she mentioned one mother who stops by her child’s institution every night to tuck her into bed.

I had described my daughter as “severely disabled”. But at no point in the conversation did the staff member inquire about the extent or type of disability my daughter has. She asked me whether I had tried out some sort of day program. When I replied that we couldn’t find a suitable one, she left it at that, with no questions about why we rejected them all.

She conceded that handing my daughter over would be “a difficult process” but that ultimately it would be worth it. Once it is done, she promised, “you will get your life back”. To conclude, she urged me to meet with the institution’s social worker who would be able to give me further details.

Sometimes this chain of institutions resorts to outright hard-sell. A video proudly publicized on its website features the hyperbolic praise of several parents who institutionalized their children. One father relates that within days of his wife’s passing, he was phoned directly by the CEO of that enterprise and urged to hand over his child. He is grateful for that interference.

In this country the belief that that large, isolated institutions is the ideal option, is embraced as gospel. Even disability advocates don't challenge it unless the blatant abuse of residents has been exposed.

And as we all know, reports of abuse are rare. Staff members are loathe to turn whistleblower for fear they’ll lose their jobs. Parents rarely learn of abuse from their children who are often incapable of reporting it. Even when they do, many are afraid to speak out lest their abused children incur revenge abuse from the staff.

So, as I said, if you have succumbed to all the pro-institutionalization PR, that is understandable and you are not alone. But rest assured, it's an entirely different story in the wider enlightened world.

This recent NY Times opinion piece ("The Lasting Pain of Children Sent to Orphanages, Rather Than Families") highlights that enormous gap.

“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."

Why is our country treating its children with disabilities as if it were a poor country when the truth is quite the reverse? Why does our government gives tens of millions of dollars annually to just one chain of institutions?

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve that more cost effectively than through institutionalization.

Many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism". is actively solicited by institutions here and in poorer countries. Ours, repeatedly posts profiles of overseas volunteers who have who have worked there. Over a dozen such volunteer "testimonies" as they are dubbed, currently appear on one website.

That NYTimes piece about volunteers has more harsh words for volunteers :

“Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away. Volunteers are also perpetuating a system that takes children from their families…What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”

So make your voice against institutionalization heard. Support parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many who institutionalize our children would keep them at home – and still “get their lives back”.

Let's follow the lead of other enlightened countries. Could they all be wrong?