Showing posts with label Disability Act. Show all posts
Showing posts with label Disability Act. Show all posts

Saturday, 2 October 2010

Subordinated Debt

It's the phrase on the lips of every eejit who's trying to look clever. Personally I think the term was invented in a board room somewhere south of Hades, to be used as a tool to bludgeon the general population into a pulp. I have to admit it's pretty effective, since only fifteen hundred people turned up to protest in Dublin last week at the extent of the country's economic hangover.

Being a simpleton with a less than competent grasp on the state on my own overdraft never mind the national debt, I resorted to my old friend Google. So here goes a bluffer's guide to Subordinated Debt :

There were many more - Google it for yourself, it makes for interesting reading. It occurred to me that children's health services will become the subordinated debt of our solution to the mess in which we find ourselves.

So if I understand this correctly, (which lets face it, in my case is a big 'if') the economic unit on which our future depends is currently being subordinated in favour of the senior units who screwed the whole thing up in the first place.

Permit me an analogy here: a child like our Boy Wonder requires expensive medical treatment to keep him alive, this treatment is attractive to senior medical units because it shows the tangible result of extending the life of that child thus reducing the national child mortality rate, which reflects well internationally on the country as a whole. The effort vs reward equation stacks up well in the short term and saving his life is rightly seen as a senior debt.

Once the danger has passed, the child then slides down to become the subordinated debt of the local primary care authority. In the eyes of the primary care bosses, the child will neither exert enough pressure nor bring sufficient reward to warrant being considered as a senior debt. As a subordinated debt, there is no incentive to provide specialist intervention to allow the child to reach their developmental targets.

When the child ends up in a classroom requiring a special needs assistant or specialist equipment, they can migrate to being a senior debt liability again but the debt has now passed to the education department. The education mandarins will in turn strive to reduce their level of debt on this child by redefining the terms of their liability. Simply put, they will change the terms of the child's entitlement. This change in the terms of entitlement will result in creative reporting from the 'ologists in primary care to meet these new terms and ensure they can off-load the child from their debt portfolio. And so the debt shifts back and forth changing status with each department.

What we all know about debt is that we tend to prioritize our repayments in favour of those yielding the biggest baseball bats should we refuse to pay. Currently the ones holding those lumps of lumber, are unidentified bond holders; nameless, faceless entities beating our children out of the way while they charge to the top of the queue.

This is what comes of living in an economy instead of a society.

Cheers,
Ann

Saturday, 25 April 2009

Moving from the land of the unwell


Some eminent academic once described living with long term illness as 'migrating to the land of the unwell'. Very apt indeed. As a family, we've been residents of the land of the unwell for nearly 6 years now. It's a funny place, the land of the unwell, very isolated and with a very strange social order. Like any land, there are some amazing residents there, but there are also some who are not really what you would call good neighbours.

Making the transition from the land of the unwell is not that simple. For a start one has to be, in short, well. We're not totally well yet but we're not unwell either. We don't have a diagnosed disability as such, but we do have some catching up to do. So that places us in limbo, somewhere between the land of the unwell and the land of the well. When you live in this limbo, bureaucracies don't quite know how to deal with you.

Take boy wonder for example, he's getting ready for mainstream school in September. This will not be possible without a Special Needs Assistant (SNA) and some intensive resource teaching hours. The SNA will not be an issue as he is incontinent and still doesn't eat, so it's a fairly straight forward medical requirement. The resource hours, on the other hand, are a bit more tricky. To qualify, he must have a permanent physical disability. We could say that as a result of a congenital defect, in his case, the absence of kidneys, he has a disability that is profound but hopefully not permanent.

However, I must supply proof. But there's a glitch. Due to a fundamental disagreement,I can't supply the very nice people in the NCSE (National Council For Special Education) with any of his reports from his Needs Assessment. The first problem is that his psychology report maintains that he has an IQ of less than 70. The reason, our learned friend, the Enable Ireland psychologist, came to this rather bizarre conclusion, is that most of the tests he carried out on Rory, related to food and eating. Having never eaten in his life, Rory simply refused to engage, ergo less than normal IQ. Brilliant.

So, I asked for a second opinion, almost a year ago now, as is my legal right under that bad joke that passes for legislation, the Disability Act 2005. In the meantime, as you may recall, I became involved in a battle with Enable Ireland over their lack of a child protection policy when screening staff.

Mysteriously my second opinion never materialises.

So now, in order to get my child the support he needs in school, I am dealing with a report that says mainstream school could never be an option for a boy with such a low IQ. Meanwhile my son is thriving in an Irish language preschool handling bilingualism with the kind of panache that only kids can display.

He doesn't have a diagnosis, just a suspicion by a muppet with a psychology degree but no common sense. He can't be assessed for ASD or any other form of intellectual disability because he is in Enable Ireland, they only do physical disability. Child and Adolescent Mental Health Services (CAHMS) won't touch him because of his psychology report. I can't access summer tuition for him because he doesn't have a diagnosis. I can't get a diagnosis because according to his psychology report, he is a human vegetable. Are you still with me?

I got thick last week and threatened legal action. I have just been informed that, I will have a second opinion within 10 weeks.

Should I call the removal van? Are we on our way?

Cheers,
Ann

Tuesday, 18 March 2008

That Parallel Universe I promised.


Hi All,

Did you ever start something and half way through,when the process is so thoroughly turgid you have one of those "what was I thinking?" moments. Well I'm slap bang in the middle of one of those moments - like just past the half way point in the dark tunnel where you have no choice but to keep going. Such is life in the middle of the latest HSE bureaucratic beauty - known as The Assessment of Need. At this point in the journey, my own personal needs could be met fairly quickly and effectively by a week in the Sun enjoying those drinks topped with paper umbrellas, or a good hypnotist telling me I've just woken from a session and the last 3 months were all a dream!

But alas I'm stuck here grappling with the immobile Gorilla that is the Assessment of Need. This little treasure was obviously cooked up by our country's best and brightest public servants with only mayhem on their minds. It even sounds positively progressive on paper. It's all there in black and white in the Disability Act 2005. Under this marvel of modern democracy, children under 5 years of age are entitled to an independent assessment of their health and educational needs arising from their disability. See, I told you it sounded good on paper. Once assessed, your child will receive a service statement - but you see, now this is where it begins to resemble a dodgy second hand car dealership. Your child is then legally entitled to the services laid out in that statement - now, how good does that sound? Except there's a but, and this is a really big one, your child is only entitled to services where available. Those two words 'where' and 'available' those harmless little collections of vowels and consonants are capable of making a complete nonsense of everything that precedes them. You go through months of assessment, 6 long months in total under the Act, to be given a statement of your child's needs but no provision of services. I warned you it was a beauty!

There are also some lovely twists along the way. For example, Rory, as you are by now, quite sick of hearing, has some quite urgent speech and language therapy needs. You don't really need to be a trained assessor to spot that one. As you also know, Enable Ireland have no speech therapist in Galway, so there is no one to carry out that part of his assessment. Hold on to your frontal lobes here - as you may experience some throbbing shortly. I innocently enquired about paying privately for this part of the assessment. Pure sacrilege on my part of course! This assessment may only be carried out by a private therapist where there is a clear case of urgent need and no one qualified within the public sector to carry it out. Apparently Rory doesn't yet fit these criteria,(go figure that one), consequently, a speech therapist must be found within the next 4 wks to assess him or they will be in breach of the act.

Nothing like the possible breach of an old act to focus the mind of a public servant! I received a call from the local Speech Therapy services manager last week. I had spoken to her last summer before I ended up at the office of the Ombudsman for Children. She was at pains to point out her safety concerns about offering Rory a service - what if he gagged? What if he can't swallow? I explained to her again, as I had also done in detail last summer, that there was nothing physically stopping him from eating - this was an acquired defensive behaviour quite common among kids who have been tube fed from birth. The problem was we couldn't get anything into his mouth! Still she felt uneasy and had even phoned Temple St. to see if they could carry out a special test under control conditions. I politely asked what exactly was involved in the test. "Oh he'll just have to swallow something and it will be filmed going down his oesophagus" she chirped. "But we can't get him to swallow anything" I wailed "that's why he needs Speech Therapy!" Her reply was an abrupt 'we'll get back to you.'

Is it just me, or is this a parallel universe populated by people who's minds are wired in a completely different manner to the rest of us poor mortals?

But lets remember here folks, while the HSE continues to prevaricate, there is a little boy who got a kidney from his dad who still can't eat.

Cheers,
Ann