A Winter Tonic.

It was one of those days, I had foolishly turned on the radio only to be assaulted by a torrent of fiscal doom and gloom. The rain was of the biblical variety and the weak spot in the kitchen had sprung a leak, spilling an expanding pool of rainwater across the floor towards the fridge. The mop was nowhere to be found and the anaemic light from the blinking bulb in the hall was vainly attempting to augment the darkness of this November noon; scuppering any hopes of a mop search and rescue mission.

I could feel the clouds lowering and then all of sudden, they were lifted by that reassuring ping of my mobile phone announcing an incoming message. Someone out there was thinking of me. It was a picture message from school. In a single flash of communication technology, this one simple image immunized me against this year's two deadly doses: the weather and the economy. I hope it works for you!

Cheers,

Ann

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 :

• In finance, subordinated debt (also known as subordinated loan, subordinated bond, subordinated debenture or junior debt) is debt which ranks after other debts should a company fall into receivership or be closed.
  en.wikipedia.org/wiki/Subordinated_debt

• Term covering hybrid core capital and subordinated loan capital. Only losses exceeding the shareholders' equity are covered.
  www.nationalirishbank.ie/en-ie/About-National-Irish-Bank/Bank-in-brief/the-crisis/Pages/Dictionary.aspx

• Debt that carries a lower-priority claim on issuer's income or assets than that of other (senior) debt.
  www.freddiemac.com/smm/s_z.htm

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

Punching Politicians

I listened to James McDonagh as he burst into the Green Party conference on the news yesterday. I heard his anger and frustration, while his distressed 11 year old daughter asked him to stop shouting. As the tears rolled down my face, I realised that it could have been me. I know that anger, that fear, that frustration brought on by exclusion. His child has special needs and has not attended school for a year, as there is no school to take her. She urgently needs speech therapy, occupational therapy and psychology services. Are we seeing a pattern here?

I thought of his state of sheer helpless hopelessness, at his wit's end, as official after official gives him the brush off, blaming cut backs for this 'regrettable state of affairs'. I remember planning acts of civil disobedience, I remember fantasizing about chaining myself to railings. One of my more brilliant plans involved defacing all the signage in Galway Community Care offices, by inserting the word 'don't' between Community and Care. I had even enlisted the support of other frustrated parents. Then Rory got sick and priorities shifted. I still regret not doing it. I know it was pointless and petty; but boy, it would have made me feel a whole lot better. The problem with dealing with grey bureaucrats, is the contamination factor; you begin to sink to their level of small minded power struggles. It is extremely difficult to retain your dignity. I was lucky to have the other kidney filter my more militant moods.

I have worked very hard to rid myself of the residual resentment and anger. The counselling helped for a while, until it began to seem pointless. Wine was also a pacifier, but had crippling side effects! Diversions such as a movie, a trashy novel or a night out with friends, provide temporary relief, by pressing pause on the angry whirring of your brain cells. However, there is nothing, (and believe me I've researched this at length, so I know of what I speak here), that will stop the gnawing sense of dread which wakes you in a cold sweat in the dead of night. The fear for your child's future, because you can't get the help needed to get them through the difficulties they face in their childhood. It's crippling, all consuming and no parent in any civilized world that I want to inhabit, should have to go through it. Have we learned nothing from our sordid past?

The sad fact of the matter for Mr McDonagh and his family, is that even if their daughter is given access to services, as is her right as a citizen of this state, the quality of service is based on an arbitrary post code lottery. Like us, she may meet a speech therapist who has been disbarred for unsafe practice in another jurisdiction. Like us, she may meet a psychologist, so uninterested in his job, that instead of trying new means to engage with her, will write her off as a vegetable, because he couldn't be arsed to even do a Google search on her condition.

At 11 years of age, she will doubtless fall into a black hole between primary and secondary school services. She could be really lucky, and make great progress with one practitioner over a few months, only to be transferred to another service and another waiting list because her current therapist must stop seeing her at the age of 12.

Rory is now aged six, and therefore outside the scope of that laughable oxymoron called Early Intervention. We have no idea who will take over his services. Enable Ireland have still not made a real commitment to Children First Child Protection Guidelines; so we cannot on principle, allow any new therapist to see him, having no guarantee that proper background checks have been carried out. He will yet again be without services, although for the purposes of official HSE records, he is listed as receiving a service, even if we have to join another four year waiting list.

What I have learned through all of this: is to trust my child. To have faith in his ability. By giving him space with lots of love and laughter, he has defied all the hideous limitations placed on him by grey officials, jaded by their jobs. If I had listened to them, my son would have been institutionalised by now, instead, he is holding his own in an Irish language mainstream school. We are fortunate that there appears to be no underlying developmental disorders, although if you listen to our speech therapist, she will try to tell you otherwise. She advised us against mainstream school, I ignored her. When I told her how well school was going, her terse response was: "I wonder how long that will last?". I'm very proud that I didn't punch her lights out, much as I may have wanted to. It's a sign that I've moved on. Mr McDonagh and his family have a long and difficult road behind and ahead of them. His isolation is palpable. I want to storm the gates of Leinster House with him. I want to punch John Gormley, Brian Cowen and Batt O'Keeffe for him. What will that achieve?

Did you know that President Mary McAleese is the patron of Enable Ireland? She, of the glowing tributes to the victims of institutional abuse. I wonder if she knows that her name lends an imprimatur to an organisation which does not adhere to even the most basic child protection principles?

Well done Mr McDonagh, I salute your bravery, your indignation and your protection of your child. I wish you strength, comfort and solidarity. But mostly I wish you a life where your daughter is allowed to fulfill her potential, and you can get back to getting some restful sleep at night.

Cheers,

Ann

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

Once more into the Breach!

With the change of guard now official since Feb. 1st, it was now deemed safe for us to return to Enable Ireland, for the first time since last summer. That old fire breathing dragon was no longer stalking the gate. Mind you, I still can't be 100% sure that the Children First child protection guidelines are now back on the menu, but that's an improvement on being 100% sure that they were off, as was the case during the former dragon's tenure! Nobody warns you of these ethical dilemmas when you venture forth into the great grey unknown of Irish disability services. You see, for the last six months, Rory hasn't been able to access Occupational Therapy, Physiotherapy or Psychology services. They were on offer alright, but I couldn't guarantee his safety where they were on offer. My Hobson's choice was to a. send my son for treatment to an organisation, where the management were ignoring national child protection guidelines, or b. not send him for therapy at all.

So, operating on the maxim that has stood me in good stead up to now, I chose the latter, as I reasoned that no therapy was better that bad therapy. Luckily for us we were able to work with Rory at home and he continues to make progress. Of course, we'd have made much more substantial progress with the help of qualified therapists but, such is the joy of the Irish system! The outcome for the child is never a priority. Enable Ireland, yes another great mind numbingly, moronic moniker of the HSE variety. Who exactly are they enabling? My contact with them has left me decidedly disabled, mentally and emotionally.

The more encounters I have with the system, the more I feel like poor old Inspector Clouseau, as some other branch of the HSE leaps, Kato like, from a wardrobe in an attempt to flatten me. I wonder if there's some ancient Asian martial art that can protect you against brainless bureaucracies? A kind of queue jumping Judo or a report busting Karate? A Kung Fu for form fillers? I could train as a HSE Mandarin mangling master! I could get a black belt in bureaucrat banjaxing! I think I could be on to something here!

.....Or maybe, it's just that this time, I really have lost it.

Cheers,
Ann

A Boy's Right to Shoes

Hi All,

Sorry for the silence - life has been busy lately what with managing milestones and contemplating military strikes on local HSE positions! As you know we've been running the gauntlet of assessment appointments for Rory's Assessment of Need. Further to this, I have now assessed that the one thing he really needs, is a full time appointment secretary.

So far, we've had his Physiotherapy needs assessed, and guess what? He needs Physio. Then we had part one of his Occupational Therapy assessment, and what a coincidence? - he needs that too! We also had the pleasure of meeting the local Psychologist and wouldn't you know it - he could do with a little support here also. The whole painful process has, at least, helpfully pointed out, that not only will I have to battle for Speech Therapy, but I'll also have a whole range of urgent needs but non existent services to look forward to in the future. Oh be still my beating heart!!

However, my own personal favourite recent encounter was with our local neighbourhood friendly Podiatrist - the person who fits kids with those really attractive corrective shoes. You all know the ones - usually navy, with sensible lace up fronts which just scream "Bully me I'm handicapped". Fortunately, I am very happy to report that they are much smarter these days and don't have that same "use me as target practice" aura.

I'd been waiting for an appointment since last summer - a mere blink of an eye in HSE waiting terms, I know, but 8 months in the life of the fallen arches of a 4 year old represents a large percentage of their life time walking on this earth. We skipped eagerly to our meeting, to be told, what we had already suspected, that yes, indeed Rory did need special shoes. Great, now it's official, where do I sign the form? Well here's the rub. It's not that simple - if it was, then unthinkable things could happen - like everyone who needs a pair might actually get them - and how would we deal with such wanton efficiency?

The very nice Podiatrist inquired if we had a medical card, I gleefully confirmed that we had. She helpfully advised that I get the shoes under the medical card scheme as they were prohibitively expensive. I naively concluded that since we had already qualified for the card and she herself had given her professional opinion of my child's need, then where's the problem? Eh, well no, you see it doesn't work like that. Sometimes the HSE doesn't always sanction them. At this stage, the old familiar temple throb was beginning to make me twitch but, I realised, that in her capacity as the mere messenger, she was clearly not the person to shoot! So I politely inquired how I would know there was a problem - of a HSE sanctioning nature so to speak. I was told that if I didn't get a letter telling me to attend the next clinic in a months' time, then I could reasonably assume that there was indeed a non sanction issue at play. I left in more of a whimper than a temper.

Then logic - the old Nemesis of all things HSE related, kicked in. I thought I'd rather just cough up whatever it costs to get the shoes now, rather than wait for another month on top of the 8 I had already waited, to be told no, and then have to pay for them anyway. So I made a few calls. I eventually happened on the right person to speak to in such situations. She was extremely efficient and understanding - clearly she couldn't have been working with the HSE too long! She would ring her boss on my behalf and get straight back to me, and she did exactly what she promised. Minutes later I was greeted with the breezy sound of her, keen as mustard, tones when she cheerily advised me to" fire ahead with the application as they were flush this month"! In my stunned state I could only wonder if I had phoned her a month earlier, would the news have been less positive? Oh yes, she agreed, it was a disgrace, but that's the way it works - in the leaner months of the HSE fiscal calendar, kids who need orthotics or special shoes go without, if that particular department is, to use their own parlance, less than flush!

Such exacting budgetary management is to be lauded - I am so glad that the best budgeting brains in the country are making sure that no kid gets expensive shoes at taxpayers' expense, without its parents first being brought to their knees!

And lets remember now folks, that there is still a little boy who got a kidney from his Dad 4 months ago who can't eat, and who still wobbles when he runs because of his fallen arches!

Cheers,
Ann

Swimming the Atlantic in Treacle

Hi All,

Are you ready for your next installment? Well here goes, after that investigation which was carried out with surgical precision, -( how else would they have traced all those lost letters?), on Sept. 27th last, we miraculously arrived at the top of the waiting list in Enable Ireland. Champagne corks popped - metaphorically at least as by this time we were up to our what's its in stress with the living related transplant only weeks away.

A social worker was dispatched to our humble abode for the requisite tea and sympathy chat so that a report could be written. So far, so familiar. A very neatly typed report arrived shortly afterwards giving full details of Rory's needs, medical history and stating that we would be admitted for Occupational, Speech and Language therapy but that also there would be input from the in house psychology team ( to review Rory's developmental delay) and that physiotherapy would be offered when a slot became available. Happy days, finally things seem to be sitting into place, and what with a kidney arriving shortly we were in danger of having a happily ever after moment here!

So we merrily went about our business, donating kidneys and generally getting on with the business of daily life. We were blissfully at one with the universe, safe in the knowledge that we had all the systems in place to ensure the best possible outcome for the new kidney. We were discharged from hospital - celebrated Christmas among our nearest and dearest, gave thanks for the amazing second chance at life that our son had been given. Nursed Niall back to health and generally basked in the enormity of what had just happened to our family.

January came - and with it the usual winter bugs and doses so we found ourselves back in hospital for much of that month. I began to get a little frustrated as progress seemed to have reversed so I decided that we should maybe speed up this speech therapy lark. The fact that Rory was still not eating was seriously beginning to complicate our lives. The balance of the anti-rejection drugs was still like playing pharmaceutical Russian Roulette and his lack of normal dietary intake was playing havoc with his sodium balance. This kid needed to start eating now!

With this in mind, I flicked into responsible parent mode again and rang Enable Ireland to arrange a home visit as Rory was still not allowed out in public due to the imuno-suppression.
The feeling I experienced during that phone call will follow me to the grave. I very politely asked to speak to the Speech Therapist, to be told 'Oh her, she resigned before Christmas" "and nobody thought to tell me"? I enquired. A more senior member of staff was called for clearly, and I was assured I would be contacted without delay. Still reeling when the phone rang, I felt surely this was just a mere glitch and of course there are systems in place for events such as this. I explained the situation and was told - "Oh sure you'd have to go to Australia to see her"
So that was it, the plan B for just this type of situation - we'd have to move to Australia - I'm so glad he pointed that one out - as the mood I was in didn't really lend itself to such forward planning! Needless to say the next few days saw what can only be described as a full and frank exchange of views between myself and Enable Ireland.

I pointed out (rather helpfully I thought) that since they had no Speech Therapist they were not now spending their Speech Therapy budget so money could be re-directed to hire in private therapists. The logic of this seemed to be way beyond the bounds of what was bureaucratically possible - the repercussions were un-thinkable! No, no, we couldn't hear of anything as logical as that - this is the public service after all and there'll be no mention of that dirty private word here. Anyway it was completely out of their hands you see it was all the fault of ....... yes, our old foe the HSE. We would be referred to one of their own hospital speech therapists - a therapist was found so end of problem. You would think so wouldn't you? Except, the suggested therapist had already seen Rory in 2004 and deemed him outside her scope of practice - on foot of this we had been referred to Enable Ireland. Are you still with me here? Let me put it simply: in 2004 she deemed Rory to be the honors paper and that a multi disciplinary team approach was necessary - the type which is allegedly only available in Enable Ireland! Now Enable Ireland were sending us back to her in a great hand washing exercise, the like of which, would surely not be found anywhere else in the civilised world!

I do often wonder about that phrase 'public service" - the waiting lists to get in would be the envy of many an exclusive club - thus rendering them, well, not very public really and here we were, actually in the inner sanctum, and we still hadn't gotten any service. So it is a bit of an oxymoron then really don't you think? Maybe they should re name it the Elite Disservice or the Uncivil Disservice? - Suggestions on a post card please!

I returned to the warmth of Temple St and asked what to do. They were suitably outraged - a rather wise stance on their part considering my, by now, murderous demeanor. A letter from our consultant to the HSE was dispatched post haste, stating in no uncertain terms that without Speech Therapy, there was a real threat to a living transplanted kidney. A pretty urgent letter you would think. He even followed it up with a reminder two weeks later - more little urgent rubber stamps maybe? No, lets remember people this is the Public Service - where the cardinal rule appears to be don't deal with the public and whatever you do, don't give them any service! That all happened in January, I have yet to see a reply.

Lets just bear in mind folks that throughout this ridiculous exercise in hand wringing and inaction, there was a little boy who had just got a kidney from his dad and who still couldn't eat.

The saga continues......
Cheers
Ann