Friday, October 31, 2008

There’s no ‘I’ in bureaucracy

My youngest daughter has Down Syndrome, so I am always very aware of any major news stories concerning people with DS. Quite often my bullshit meter is on high alert as well to see how people with DS are treated by the media. Mostly this is because I got sick very quickly, when we first found out that she had DS, of people telling us how “they” are such beautiful people; “they” are so loving and kind. My daughter was a week old and she had already been pigeonholed into a group – she was a plural seemingly forever denied the right to be singular.

I can remember thinking, “How do you know she’ll be lovely – she might grow up to be a total bitch?” In fact I resented that people discounted her even the chance to be a bit bitchy, or miserable, or grumpy, or anything other than “so loving; so kind”.

Now of course it turns out, that while she is only 2, I can say that she is an absolutely lovely little girl, who makes the world a better place when she smiles. But when she is at day care she’ll also let the other kids know when she is playing with a toy and isn’t really in a mood to share, so I remain hopeful that she will grow up to be a strong woman who (while hopefully not bitchy!) is not just some gormless “so loving, so kind” girl whom people will just pigeonhole. If she is loving and kind (which I know she will be) it will be because she is; not because they are.

In short, she is a person. She is an individual.

I am equally alert to stories where people use family members with DS to claim some greater knowledge. And yes, I’m looking at you Sarah Palin.

Palin’s youngest son, Trig, aside from being saddled with the dumbest name in Christendom, also has DS. He’s 6 months old and apparently this now makes her an expert on special-needs children:

As she said in her VP debate:

"To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."

Well maybe she is. All I know is in the first 6 months after our daughter’s birth, my wife and I felt anything but expert on the needs of special kids (and in fact still don't feel that way). Similarly I don't consider myself to be an expert on car safety because I wear a seat belt every time I drive, or I’m an educational policy whiz because I went to school.

John McCain brought his usual gravy like clarity to the subject in his debate by saying Palin

"understands special-needs families," said McCain. "She understands that autism is on the rise, that we've got to find out what's causing it, and we've got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children. She understands that better than almost any American that I know."

To which I wondered, when did DS mean autism? And yeah I know there is a high degree of overlap, and a number of the issues are the same, but geez, he might have well referred to his remival of a melanoma and said he has a good understanding of ovarian cancer.

Having served in a war doesn’t make someone a good president, and having a child with DS certainly doesn’t make you an expert on special needs – you may be more aware of the problems, but I certainly don’t have any more solutions than I would have had I talked to a stack of people/groups involved with DS (you know what you’re supposed to do when developing policy).

Now all of this is a round about way of getting to the issue of the day – that of a German doctor working in Horsham being denied a permanent visa because his son has DS.

Boy the media went into a spin with this. And I must admit as a father of a girl with DS I was pretty angry this morning while reading the articles. The blogs got involved – Andrew Bolt wrote a pretty measured one – he didn’t criticize the government, but just said how irrational it all was. His readers, however, mostly went in head first decrying the Rudd Government – saying if the doctor was Indian he’d be allowed to stay etc etc.

Most of them missed the fact that the decision was a bureaucratic one (the Minister certainly would not have been aware), it was subject to appeal and only then would/could the Minister for Immigration get involved and overturn it (if that didn't happen at the appeal stage). And it also wasn’t like there is a huge rush – Dr Moeller's temporary visa runs out in 2010.

However, I was glad to see Nicola Roxon getting involved very early, as the dopiness of denying a doctor to stay in a country because his son might need medical help requires leaps of logic only possible within the bureaucracy.

The real issue here is not the Rudd Government, but the Dept of Immigration and Citizenship. This dept has always had a problem with acronyms – they used to be the Dept of Immigration and Multicultural Affairs, or DIMA (always pronounced as Deema rather than Dim ah). Now its acronym is DIC, but they most certainly do not use that.

This department under the Howard Government was an embarrassment to Australia, and the public service; it was the department where your soul went to die.

The problem in this case is that you can’t really allow people to migrate to Australia if it seems like they are doing it merely to use our health system. It would be wonderful if we could bring the world in, but it’s not going to happen; thus people with medical conditions are always going to have struggle through hoops to get in.

The problem with the policy is that it is unlikely Dr Moeller’s son Lukas would be a “drain on the medical system” – most intensive medical needs for DS kids are very early on when they often need operations on their hearts or bowels. But even this is not a given – thankfully our daughter did not need any such operations.

Which brings us to the real problem – the department has viewed Lukas Moeller as a plural, and not a singular.

The best voice on this was Down Syndrome Victoria executive officer Catherine McAlpine who said the decision was “disgraceful and discriminatory”:

“The Department are not looking at Lukas as an individual or seeing his potential. Instead, they are making assumptions based on their outmoded understanding of intellectual disability,” she said.

Spot on.

Look, the issues immigration has to deal with are incredibly hard, and I have a lot of sympathy for the people working in the Department. By its very nature the Department is concerned with the plurality of the nation, but if it is a department that doesn’t also have a focus on people as individuals, then it ain’t worth spit, and needs a major overhaul.

The message on this case from the Department is fairly standard, but the Minister (Chris Evans) does seem to be looking at improving things:

"A spokesman for the minister said he could only intervene after the tribunal hearing, but in the meantime the department was reviewing its powers to grant waivers on a strict health requirement for people in the skilled-migrant category seeking permanent residency.

The minister asked for advice on the issue of waivers some week ago, as he has received several requests for ministerial intervention by people with pre-existing medical conditions in the short time he has been minister."

I am sure this decision will be overturned – either on appeal or by the Minister. It’s such an obviously wrong decision.

But what is of more importance is that the Evans shakes up his department – and improves the culture of the place. Officials do need to abide by the rulings (as they did in this case) – in fact if they didn’t there would be more hell to pay. But there needs to be more scope and understanding to realise when the rules are wrong – either for individual cases or across the board – and to know that there needs to be exceptions or changes made.

I don’t criticize the Government on this – though if it turns out that Dr Moeller does have to go back to Germany, I’ll struggle to vote ALP next time round – but this is Strike One on a Department that already has a bad history, and one which needs reform. Admittedly this is a small slip because the process hasn’t even been completed – but the next stuff up by the Department should have the public wondering what Evans has been doing – he won’t be able to say he didn’t know there were problems.

Above all he has to be able to find the singular within the plural.

And Rudd should perhaps remind Evans, that if he can’t find it, there’s a few singular individuals on the ALP's Backbench at the moment that I am sure gladly would.

1 comment:

@MsDovic said...

Fantastic post. I'm a little late reading but I was nodding my head all the way through.

Clever clever man (and especially since I agreed with it all :)).