The system

This could be a long one…

The system as we know was originally designed to bring disabled children out of institutions and back into homes with their families, where they belong.

Why take children with the an extreme level of care out of qualified “homes” and bring them back to their families?

There’s 1 very simple reason, one we take for granted everyday of our modern lives;

Fundamental human rights.

We’re lucky to be living in a first world country that exercises these rights.

I’ll be first to admit that the system frustrates the hell out of me, their competance is questionable, and any government body, no matter what they are governing, doesn’t exactly act quickly.

Like most things, it could be worse!

Our old neighbour has a 40 something year old son,  he was starved of oxygen at birth which resulted in severe brain damage. When he was 3,  he was institutionalised.

That’s not that long ago really….

His parents were told “We’ll get him walking, talking, eating and communicating”

None of which came to fruition.

But even he was lucky in a sense, he was probably one the first ones who was not drugged, researched, abused and died early.

The system today, was in all essence born around 1898 when a lady named Emma Hjort opened a home for children who could not go to a normal school.

Emma Hjorts house is now a museum, it ran until 1996
Emma Hjorts house is now a museum, it ran until 1996

In 1903 it was moved to Tokerud farm and expanded to be able to help adults.

In 1915 when Tokerud farm, the only national home for disabled people was struggling, the government took over.

It was again expanded in 1933 and after the war.

Anyone who was able to help out on the farm did
Anyone who was able to help out on the farm did

Sterilisation was introduced in the 30s in Norway when patients were checked out with medical certificates stating “Washed, vacininated and checked out”

During 1940-1945, the death count rose alarmingly , and the cause of death described as medicinal overdose. Conditions however were the underlying cause.

Inside

By 1949 capacity was reached, the only way to recieve help was to pay privately, and the profit went back to Tokerud and Klæbu homes in Norways most elite district, Bærum.

During that time a child psychologist by the name of Ole B. Munch campaigned for a nationalised institution for medicinal and pyschological research.

It’s my understanding that he also created the medical position of “vernepleier” which directly translates to “protection carer” Not sure if this is a Scandinavian role or if it is a globally recognised position.

Anyway, he waited until 1958 until the institutions were realised. These institutions were plagued by a lack of funding, qualified staff and last but not least, a lack will from the government.

Munch let this picture be published in a news paper in 1966, for pure provocation. He wanted exposure, he wanted to be noticed, the intsitution needed money.
Munch let this picture be published in a news paper in 1966, for pure provocation. He wanted exposure, he wanted to be noticed, the intsitution needed money.

The picture above failed, focus fell quickly on “infringements”, or whats’ wrong with that naked woman.

Guess we haven’t changed that much in 50 years have we……?

In 1967 the first foundation was created for developmentally disabled persons. By 1975 a law was passed demanding fully qualified employees, training and hygienic compliances in institutions.

It’s around this time oil was found, the country started reaping the economical benefits.

In 1990 the responsibility for the central institutions were handed to the state council governments through a reform called the HVPU, or health protection for the developmentally challenged.

Norway has 19 states and 428 councils.

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I can tell you from experience, despite being bound by the same law, none of them operate with same jurisdiction.

The HVPU law states amongst many other things that these people shall be included into society, and given a place to live in their home council. Adults who live under these laws are collected in one place, they have mostly fantastic conditions, supervision and freedom. There are of course exceptions.

Whilst younger children such as Jennifer are not subjected to cruel tests, drugging and even worse. Those children like Jennifer which were born into institutions died early, they weren’t cared for, they were subject to horrific ordeals.

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One, possibly many of those children touched someone in way only a disabled child can touch you….

Someone realised along the way that these children have all of the fundamental human qualities, and they express it in their own way.

The system today keeps my child almost pain free, it keeps her healthy and nutritioned.

The system allows Jennifer to live at home by granting us equipment, medical supplies, support functions and free health care.

There’s not a hope in hell that we could afford Jennifer’s ever rising health care costs. Her chairs, her pram, her standing frame and the extension to our home is astronomical.

Her medicines cost about the same as it costs to feed the rest of her family and her syringes, tubes, AFOs are all covered too.

It’s fair to say we’d be on the street if weren’t for the system.

Jennifer’s not just a person who can’t walk or talk, she’s a person suffering from a cronic sickness, while non-progressive, it’s incurable.

We can’t just find another way, we need help.

Her muscles may one day be so stiff that swallowing is just not possible.

If wasn’t for the system we couldn’t have her at home, we’d have sunk long ago and Jennifer most probably wouldn’t be alive….

I know for a fact there’s people, politicians and the like that look only at the numbers.

They’d probably like nothing less than to eradicate the “weak” and cut costs…

After all, isn’t that why we have the abortion laws?

Sometimes I wonder what we complain about, are we just having first world problems again?

But if we lay down or just took it on the chin everytime we got a no, where would we get?

Capture

The system has been built by believers, and it’s growth has been greatly influenced by it’s users. Now 30 or so years after these children were allowed to live at home again, the system is starting to understand. Things take time, and in our world time is of the essence…..

So why, why do all this?

Why create a system that costs the tax payer money?

Or is it cheaper to have the kids at home?

Does money even matter?

In Norway, taxes covers the cost health care, few have private insurance and private clinics are few and far between. If taxes didn’t cover her medical costs, private insurance would.

Some may feel that these children use a lot of tax payers money that will never be reimbursed. But I pay insurance every year that I hardly ever use.

My insurance costs pay for some idiot who burns his house down because he left a candle burning…

That’s just the way it is.

Money means nothing when you’re giving someone extra years of life that they would surely not have had all those years ago.

I’ll be the first to admit the sytems gives me a sense of guilt, Jennifer recieves way more than she, or Odrun and I can ever give back.

That guilt always dissapears when I ask myself the question;

What would you do if it was your child?

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