Special needs.Disability. They can make me appear before them,but they cant make Fitz

[cakeordeath]

Here it is. Just got the phone call from the HSE doctor. My husband and I have to appear before a HSE doctor on Friday at a specific time , as our sons Domiciliary Care Allowance is 'under Review'.(200 Euro per month).

We are to bring any recent consultants letters, reports, diagnosis...everything.


My husband will take the morning off. We will keep our son home from school. I will take the morning off.WE are both paid by the hour. So ,a loss of paltry earnings.

I am angry. Our sweetheart has been in the system since birth. We didn't apply for a medical card for him until he was nearly 8 years old. Never once tried to bleed the system.Didn't ever really know anything about 'the system'.They found it so odd that we hadn't even applied. Of course it was immediately granted for our son.He has had his long term illness number since birth.We use that for his appliances.His daily meds go through the HSE. His Nappies ( yes, he is 8) go through the HSE. 12 surgeries since birth including 2 last year and one (major) 3 weeks ago.He is a soldier and is doing well.Intellectual disability and physical disability. Medical complications, vision problems and severe speech delay.He has a very very rare syndrome.Much of what we have given him,we pay for privately.We get on with it all and we adore him.

Now, again, I have to sit and prove,and be grilled,and answer, and fill out the forms, and bring the other ones . Now , what a gi-f'n-normous WASTE of my time ,our time,the HSE's time and resources.

Do they think for one split SECOND that the lesions disappeared from his brain? His neurological problems miraculously resolved themselves? I mean what? What? What do they think has changed since the last "REVIEW"?.

I am sick of the willful waste in this country. The overlapping and repeated form -filling,red tape and bureaucracy. Surely, Surely a simple letter from my sons geneticist would suffice ? Or even a moments cross referencing or a phone call to his specialist even.No. No. I must 'present' myself and my son. Prove it, go on PROVE he still has a disability. And I hate these REVIEWS because they make me look at everything that is 'wrong' with my son. All for 200 Euro a month.

Just like they made Fitz present himself, Right?I have to justify my son to them right? Like they have to justify their behavior ,right?. They ARE answerable too aren't they? I mean, please tell me they are answerable too. Just like MY son is.

My God but i'd hate to see any waste within the HSE. What is this endless duplication , this burden of proof.....forms forms and endless paperwork.

Five phonecalls I had over his moving from a nappy to a pull-up last year, two home visits from the health nurse, and THEN a MEETING with the senior area something or other!!!Unbelievable!!! did they think i was running a black market in nappies for 8 year olds?!Oh yeah ! There's a niche market.


Well, so long as WE ARE ALL ANSWERABLE, RIGHT? SO LONG AS WE ALL HAVE TO JUSTIFY OURSELVES, RIGHT?
We wouldn't want to see one Cent unaccounted for now, would We?

They couldn't make him appear, but they can make me.Guess that's because i'm just one of 'us'.

[toxic avenger]

My mum is paralysed (and very obviously so) with MS, needing permanent care. She can barely move her arms, her legs are gone altogether, and there are myriad associated problems, each one on its own enough to make most people depressed (though she never ever complains). The HSE sent a woman doctor to assess her for eligibility for disability allowance (this after years in 'the system'). Fine, they have to do the checks. But this woman was appalling. She was condescending and almost hostile, nearly demanding that she walk a few steps out of the wheelchair (mum hasn't taken a single step since around 2001/2). My mum tried to explain that she simply couldn't even move her legs, let alone stand on them, but the woman kept insisting. My dad arrived and saw this, went ballistic, and threw the woman out. It was utterly incredible and absolutely unnecessary (even given the need to weed out the shysters). We concluded that it must be deliberately designed to put people off applying. Call us paranoid...

[imokyrok]

My mum is paralysed (and very obviously so) with MS, needing permanent care. She can barely move her arms, her legs are gone altogether, and there are myriad associated problems, each one on its own enough to make most people depressed (though she never ever complains). The HSE sent a woman doctor to assess her for eligibility for disability allowance (this after years in 'the system'). Fine, they have to do the checks. But this woman was appalling. She was condescending and almost hostile, nearly demanding that she walk a few steps out of the wheelchair (mum hasn't taken a single step since around 2001/2). My mum tried to explain that she simply couldn't even move her legs, let alone stand on them, but the woman kept insisting. My dad arrived and saw this, went ballistic, and threw the woman out. It was utterly incredible and absolutely unnecessary (even given the need to weed out the shysters). We concluded that it must be deliberately designed to put people off applying. Call us paranoid...

That doctor probably couldn't make in general practice and so has been palmed of on those who can't fight back. Been there, done that.

[yehbut_nobut]

My mum is paralysed (and very obviously so) with MS, needing permanent care. She can barely move her arms, her legs are gone altogether, and there are myriad associated problems, each one on its own enough to make most people depressed (though she never ever complains). The HSE sent a woman doctor to assess her for eligibility for disability allowance (this after years in 'the system'). Fine, they have to do the checks. But this woman was appalling. She was condescending and almost hostile, nearly demanding that she walk a few steps out of the wheelchair (mum hasn't taken a single step since around 2001/2). My mum tried to explain that she simply couldn't even move her legs, let alone stand on them, but the woman kept insisting. My dad arrived and saw this, went ballistic, and threw the woman out. It was utterly incredible and absolutely unnecessary (even given the need to weed out the shysters). We concluded that it must be deliberately designed to put people off applying. Call us paranoid...

that's appaling - I hope you made a complaint. DA medical inspectors are employed by the Dept social welfare, not the HSE however. Either way you should invoke the complaints procedure.

Management DO take them seriously, whatever you may think (well founded complaints seems to be the one thing that freaks them out, as far as i can see). Don't be angry, don't get agressive, just state what happend is enough.

As for the OP's post, I can only sympathise. Unfortunately the people who hand out the nappies etc are managed by bean counters who will check the files and ask them why X number of items / payments were issued and they will have to justify things by having up to date records on your file regarding latest assesment, forms signed, approvals witnessed etc. etc.

It is piddling, mean-spirited beurocracy at its worst, but unfortunately its usually designed to weed out the people who DO abuse the system (yes im afraid I am aware of people trying to get nappies, hoping to sell them!), and not for the vast majority of regular decent folks.

[meriwether2]

Stop the lights.

My younger brother is autistic. Normal school simply did not do. He was much a distraction to the effective running of a class as he was unsuited to the normal curriculum.

I tell you, it is a grim search for facilities in county Galway for someone with these needs, as my parents will attest.

What there is is many wonderful people in the system who will try and help. What there isn't is something for them to work with.

One example: 1 possible solution put forward by the education system was his inclusion in a centre primarily aimed at problem teenagers in Galway city. The usual cliched problems - anti social behaviour, dtugs, non attendance at school, poor education standards, teenage pregnancy, etc etc.

And we were suposed to slot an autistic teenager into this? This wasn't a solution. This was somewhere to shove him.

[The OD]

You have my deepest sympathies that these people feel it necessary to increase your suffering with this small minded, sickening behaviour.

Dont expect the government to turn on their paymasters, as far as I am concerned, the entire cabinet has serious questions to answer.

[Marlowe]

The ordinary people suffer,while the villains go free

[meriwether2]

The ordinary people suffer,while the villains go free

Agreed.

In 5 years time, the OP will still have a situation with their son.

Toxics mother will still be in her stuation.

The education system will still have failed my brother.

Multiply these by a couple of thousand, to take in everyone else in the same situation, and add parents and carers.

In 5 years time, Khuntz like Sean Fitzpatrick will be fine. Loads of money.

Fat, useless politician Khuntz on all sides (about 150 out of 166, I suggest) will be fine. Loads of money.

Useless Khuntz like the financial regulator and assorted cronies will be fine. Loads of money.

Ramping stockbrokers and duplitious property hangers-on will be fine. Loads of money.

The golden circle will be fine. Loads of money.

In essence, greedy, reckless, careless gombeen Khuntz who got us into this mess will be fine. Loads of money.

Ordinary dispensibles like Toxics Ma' and the OP's son will have no money.

I'll bet any money. Any money, that Sean FitzPatrick will be a million miles from the situation of the OP and her family in 5 years time.

This is not a party political broadcast. This is reality.

[cakeordeath]

I cant believe that there are those of my fellow citizens who are given the choice to 'comply' or 'Explain'.This is turning into a comedy!... a(lbeit a very tragic one).What response would I get if i contacted the HSE and said " I choose 'explain' please.I'm not up to 'complying' right now.......

"Morning Sir ! Comply or explain?"
"I'll have the 'Explain' ,please ."

The government are positively anal when it comes to double & treble checking certain things.I know this to be the experience of other parents of children with Special needs/disability. The proof, the detail required is unreal. It wouldn't surprise me if they asked me to enclose a urine sample!( my own!)

It makes all the closet crookery and immoral carryings-on hard to take.

Different rules apply to different people.Different standards. Different codes of ethics. Different sets of values (decency, honesty,accountability....). And "THEY" don't care.They 'are' above it all.

The criminals thought they were untouchable didn't they? Then came Galvin and the CAB. We need him or another like him.

At least we have our integrity. ( poor aul sods that we are!)

I'll go along on Friday just like alwaysand I will smile, me, my husband, my son and my folder.I'll answer it all & provide them with all the written proof they need. Though their eyes, in just a glance, would answer every question without needing to ask.

Dont understand it all.I'm not Golden enough.

Thanks for the lovely replies
Cake

[imokyrok]

Reality is right Meri. It's almost as difficult trying to provide services for the disabled in this country as it is to receive them. I've been on both sides of the counter and I could tell you stories that would make you cringe. That's why I get so furious with some of the silver spoon brigade on this site. Btw cake - I think I misinterpreted a post of yours on a thread earlier. It was to do with the single mother. I realised my mistake later but couldn't find the post again to correct it. Sorry if I was a bit harsh.