People with disabilities & 250,000 carers in Ireland.

23-09-2017 12:55PM #1

Was driving in the car around 4pm yesterday afternoon and while flicking through stations I came upon an exceptionally articulate man on RTÉ Radio 1. I never got his second name as I had to leave the car but his first name was Tom, and he has a son named Eoghan (Eoin?), who has a serious disability.

Anyway, this man was absolutely on fire talking about the struggles he has on a quotidian basis to secure essential services for his child. About how he is recurrently passed from one of a large number of organisations to another and another, all abnegating responsibility for particular services - or, as he put it when somebody rang up with similar experiences, 'Welcome to my world'. He was lucid, yet measured - placing the ultimate blame not on the HSE or the myriad of other bodies but on An Taoiseach for the continuation of what he convincingly contended was one of the final acceptable areas of discrimination against a clearly defined section of Irish citizens.

He had enough clarity of mind to appeal to Varadkar as not only Taoiseach but as somebody from a community which had to fight to end discrimination, as somebody who should have empathy. He was impressively complimentary, yet firm: "I know he's a good, honourable man... but he's also the person with most power to end this discrimantion" (I paraphrase). And he asked: in 2017 why is it still acceptable to discriminate against disabled people and the 250,000 carers in Ireland? The Irish state is, he again and again mentioned, the only state in the EU which refuses to ratify the UN Convention on the Rights of People with Disabilities. The only one.

The constancy of the battles the man has to secure the most basic supports for his child is most remarkable: if somebody with his energy and eloquence struggles so much for the basics, how are other disabled people and their carers managing? And the truth is they aren't: by EU standards Irish carers receive a pitiful number of hours break from caring. Moreover, he was emphatic that disability services have only gone backwards in Ireland in the past ten years.

It's hard enough to raise children, balance work and so much else but when life throws you a curveball of a child who has a disability and the power of the state to help quickly becomes the power to hinder, it must take extraordinary human spirit to keep fighting for what's right. I think personally that that fight would destroy me.

How long before the rest of us stop tolerating this state-sponsored callousness towards people with disabilities and their families? Will it only happen if Leo Varadkar and senior civil servants in the departments of Finance and Health are thrown the same curveball in life? And maybe, just maybe, if the vast majority of EU states can find the money to treat these people much better the problem is not so much money as spending priorities for the Irish government and, let's face it, a huge dose of establishment misogyny (most of the 250,000 carers are female and thus easier to walk on)?

Keep all these carers starved of support/ busy/oppressed and they won't have the energy to mobilise against Irish government policy. Imagine if, however, all those people did believe in change just enough for that massive protest in Dublin? I'd definitely be out supporting them (I've no family members with a disability).

bucketybuck · 23-09-2017 12:57PM

What is the government denying to disabled people that it is giving to me as a non-disabled person?

machiavellianme · 23-09-2017 01:02PM

bucketybuck wrote: »

What is the government denying to disabled people that it is giving to me as a non-disabled person?

A forever home and a bucket load of cash every week.

23-09-2017 01:03PM

bucketybuck wrote: »

What is the government denying to disabled people that it is giving to me as a non-disabled person?

In his case his son had a neuromuscular disease which needed regular professional physiotherapy and a whole heap of associated supports which weren't forthcoming.

bucketybuck · 23-09-2017 01:04PM

machiavellianme wrote: »

A forever home and a bucket load of cash every week.

I can't tell if you are being facetious or not, but I certainly don't get either of those things from the government (or anybody else).

bucketybuck · 23-09-2017 01:04PM

Deleted User wrote: »

In his case his son had a neuromuscular disease which needed regular professional physiotherapy and a whole heap of associated supports which weren't forthcoming.

I'm just curious why you kept using the word "discrimination"?

Avatar MIA · 23-09-2017 01:05PM

You'll also find that Ireland has a disproportionate level of disabled people due to our stance on abortions compared to other countries.

This is likely a cost factor.

23-09-2017 01:07PM

bucketybuck wrote: »

I'm just curious why you kept using the word "discrimination"?

Because they are being denied rights to participate in this society to the best of their abilities by the denial of the essential state supports that would facilitate that.

_Whimsical_ · 23-09-2017 01:12PM

bucketybuck wrote: »

What is the government denying to disabled people that it is giving to me as a non-disabled person?

The supports necessary to participate in the world. That man on the radio yesterday talked about his 15 year old son who is wheelchair bound and has server visual impairment. He's attending school and will sit his Junior cert this year. As a result of his visual impairment he needs books with much larger print that the dept of ed should be supplying him with. However while everyone in the class has started their work and Sept is drawing to a close this child still had no books and this man has to be constantly ringing trying to follow them up, trying to fight for what the child deserves. That boy has to struggle harder than every other child to do school work, it's not as if his disability is new or the dept of Ed weren't aware of his needs, yet still he's facing this extra hurdle of being a month behind his classmates because they drag their feet and won't prioritise something so essential. That's just one small example, but he said it's the same for every medical aid the child needs too. He's constantly wrangled in bureaucracy while caring for a very ill boy that he's trying to provide the basics of life for.

bucketybuck · 23-09-2017 01:17PM

Deleted User wrote: »

Because they are being denied rights to participate in this society to the best of their abilities by the denial of the essential state supports that would facilitate that.

Denied rights? If its a right then everybody would get them, so what are they being denied that I am not being denied?

They aren't being given extra money and assistance? Neither am I, so where is the discrimination?

Avatar MIA · 23-09-2017 01:18PM

_Whimsical_ wrote: »

this child still had no books and this man has to be constantly ringing trying to follow them up, trying to fight for what the child deserves.

What? The parents of children provide the books for their kids. Is this a social welfare issue - they cannot afford books?

If it's the case they need books with larger print, then are these actually available?

If it were me and my child - in this instance - I'd get a regular book and get each page enlarged. Not easy, but doable.

Spider Web · 23-09-2017 01:21PM

"The rest of us" meaning "Everyone else except me".

evolving_doors · 23-09-2017 01:29PM

bucketybuck wrote: »

Denied rights? If its a right then everybody would get them, so what are they being denied that I am not being denied?

They aren't being given extra money and assistance? Neither am I, so where is the discrimination?

Special services... so as the example above stated all the other kids can use their books fine but he needs modified ones. ...
So your probably thinking 'shur can't he go away and buy them'... but because you have zero experience of providing for a disabled child you don't realise everything else that comes along with it... and all the paperwork.
But maybe some on here prefer they just went away and hid in institutions like the good lodge days.

_Whimsical_ · 23-09-2017 01:32PM

Avatar MIA wrote: »

What? The parents of children provide the books for their kids. Is this a social welfare issue - they cannot afford books?

If it's the case they need books with larger print, then are these actually available?

If it were me and my child - in this instance - I'd get a regular book and get each page enlarged. Not easy, but doable.

No the department of education provide them for children who have severe disabilities because there's a recognition that if your child is very severely disabled is very difficult to work and afford such things. You're attending medical appointments, you're off work everytime thryre too unwell to go to school etc, you're exhausted providing the care they need, you're not every employers dream. Almost always in these situations one parent has to give up work. Also special books with larger print, like everything else special, is very expensive. This man is up at 6 am every morning doing an hr of physio with his son as his right to sufficient physio was taken away during the recession like a lot of other things.
You might find in the same circumstances that you wouldn't have quite the time or energy to enlarge and print pages from 9 subjects everyday.
And you shouldn't have to.

The books are available and provided for such children every year, but not without a lot of difficulty and frustration for the child and patent obviously if this mans experience is typical.

bucketybuck · 23-09-2017 01:33PM

evolving_doors wrote: »

Special services... so as the example above stated all the other kids can use their books fine but he needs modified ones. ...
So your probably thinking 'shur can't he go away and buy them'... but because you have zero experience of providing for a disabled child you don't realise everything else that comes along with it... and all the paperwork.
But maybe some on here prefer they just went away and hid in institutions like the good lodge days.

I know full well everything else that comes along with it.

My question and point was very simple, why is this being called discrimination?

I am well aware that disabled people need extra help in various areas but people like the OP and the man being quoted would better serve their cause by being accurate in discussing it. Disabled people aren't discriminated against. They are not denied anything that isn't also denied to everybody else.

strandroad · 23-09-2017 01:33PM

Avatar MIA wrote: »

You'll also find that Ireland has a disproportionate level of disabled people due to our stance on abortions compared to other countries.

This is likely a cost factor.

I spoke to a woman from one of the reproductive health centres once and she said it's a bit of an urban legend. People who care about congenital/inherited conditions in their children would travel if they needed to. People who don't care will just have kids regardless.
Are there any stats on the levels of disability in Ireland (as opposed to numbers on disability allowance)?

Avatar MIA · 23-09-2017 01:42PM

strandroad wrote: »

Are there any stats on the levels of disability in Ireland (as opposed to numbers on disability allowance)?

Just taking Down Syndrome as an example, a UK study, but the same logic applies.

https://frank.blogs.dsegroup.org/2016/10/05/how-many-babies-would-be-born-with-down-syndrome-each-year-in-the-uk-in-the-absence-of-prenatal-screening/

evolving_doors · 23-09-2017 01:43PM

Avatar MIA wrote: »

What? The parents of children provide the books for their kids. Is this a social welfare issue - they cannot afford books?

If it's the case they need books with larger print, then are these actually available?

If it were me and my child - in this instance - I'd get a regular book and get each page enlarged. Not easy, but doable.

Nice try... so how many pages do you think you'd be doing for all the secondary books. I presume it would be double if you're enlarging+ colour copies
Plus... whos books are you going to get a loan off?
Photocopying school books is illegal btw.

You are also ignoring the fact that the money is there to provide this particular resource but the paperwork is slow and ridiculous... supporting evidence from occupational therapist, psychologist, teacher, l. support coordinator, signature of principal . Then the criteria and documentation changes every year so any little discrepancy and you have to reapply all over again ( before the moving cut off date which they never inform schools about). Then when you get the go ahead the school might have to purchase the material and claim the money back.
And that's just for the books.

Then rinse and repeat for learning support classes, occupational therapy, counselling, physiotherapy, assistive technology, special accommodations for exams, exemptions for spelling and grammar, exemptions from Irish, special applications for college if they get that far.
And that's just the 9-4 school stuff!

Avatar MIA · 23-09-2017 01:47PM

_Whimsical_ wrote: »

No the department of education provide them for children who have severe disabilities because there's a recognition that if your child is very severely disabled is very difficult to work and afford such things. You're attending medical appointments, you're off work everytime thryre too unwell to go to school etc, you're exhausted providing the care they need, you're not every employers dream. Almost always in these situations one parent has to give up work. Also special books with larger print, like everything else special, is very expensive. This man is up at 6 am every morning doing an hr of physio with his son as his right to sufficient physio was taken away during the recession like a lot of other things.
You might find in the same circumstances that you wouldn't have quite the time or energy to enlarge and print pages from 9 subjects everyday.
And you shouldn't have to.

The books are available and provided for such children every year, but not without a lot of difficulty and frustration for the child and patent obviously if this mans experience is typical.

So, they are provided or could be bought. So, it is partially a social welfare thing.

You're right, I don't have to look after kids with special needs.

However, even in the general population in whatever career, there are always those that are more active than others. I've no doubt there are parents of disabled children that wouldn't rely on the state if they thought they could put the extra effort in to get their child what they need.

Like the general population, there are some that would sit back and wait for the state to help them out.

evolving_doors · 23-09-2017 01:48PM

Avatar MIA wrote: »

Just taking Down Syndrome as an example, a UK study, but the same logic applies.

https://frank.blogs.dsegroup.org/2016/10/05/how-many-babies-would-be-born-with-down-syndrome-each-year-in-the-uk-in-the-absence-of-prenatal-screening/

This abortion argument is muddying the waters . The kids are here, they need help.
Isn't it great of those KW's to be able to recommend that parents 'should have aborted the kid'.
Well done.
Hope it never visits your life/bubble.

Avatar MIA · 23-09-2017 01:51PM

evolving_doors wrote: »

Nice try... so how many pages do you think you'd be doing for all the secondary books.

As many as required.

evolving_doors wrote: »

Photocopying school books is illegal btw.

If it came to my child's welfare I'd have zero problem with this. I know of no teachers (and I know my fair share) that would have any problems with this.

evolving_doors wrote: »

Plus... whos books are you going to get a loan off?

Seriously, is there any initiative at all expected?

Avatar MIA · 23-09-2017 01:53PM

evolving_doors wrote: »

This abortion argument is muddying the waters . The kids are here, they need help.
Isn't it great of those KW's to be able to recommend that parents 'should have aborted the kid'.
Well done.
Hope it never visits your life/bubble.

Stop trying to make it personal. I'm stating a fact, and the cost implications of such. The OP pointed out Ireland hasn't signed up the the convention, I pointed out another area where Ireland is different to most other countries.

Nabber · 23-09-2017 01:55PM

I feel sorry for people with real issues.

The resource teacher in my sons school has been tied up for the past week helping 1st class boys to deal with a change in the yard over the summer. Apparently some boys really missed the small Astro turf area.

The parents are requesting a secondary resource in the school.... It's wastage like that that pisses me off.

Widdershins · 23-09-2017 02:02PM

bucketybuck wrote: »

I know full well everything else that comes along with it.

My question and point was very simple, why is this being called discrimination?

I am well aware that disabled people need extra help in various areas but people like the OP and the man being quoted would better serve their cause by being accurate in discussing it. Disabled people aren't discriminated against. They are not denied anything that isn't also denied to everybody else.

An example came to my mind, my friend checks on disabled access in public buildings and apparently it's still overlooked and very inadequate. Also lack of wheelchair accessible equipment in playgrounds. There are modified swings available but despite well supported petitions the councils seem to refuse to install them in town playgrounds. So they're certainly denied things that others are not denied.

bucketybuck · 23-09-2017 02:21PM

Widdershins wrote: »

An example came to my mind, my friend checks on disabled access in public buildings and apparently it's still overlooked and very inadequate. Also lack of wheelchair accessible equipment in playgrounds. There are modified swings available but despite well supported petitions the councils seem to refuse to install them in town playgrounds. So they're certainly denied things that others are not denied.

Nothing you have described is discrimination. You really need to consider the point being made instead of just throwing out random examples of the struggles disabled people face.

Take your playground without the specially modified swings for example, who specifically is doing the discriminating? The swings there are open to all and sundry, not one single person is being denied the opportunity to use those swings. Not one single person is barred from using those swings. There is no discrimination.

There are people who for their own reasons cannot use the swings. Thats a shame but it is not discrimination on the part of the government or council.

You don't need an end to discrimination because there isn't any. What you need is help above and beyond what everybody else gets, thats something else entirely. And I have no problem with fighting for that extra help, I just think it helps nobody to use such a loaded term as "discrimination" when it really doesn't apply at all.

Widdershins · 23-09-2017 02:32PM

bucketybuck wrote: »

Nothing you have described is discrimination. You really need to consider the point being made instead of just throwing out random examples of the struggles disabled people face.

Take your playground without the specially modified swings for example, who specifically is doing the discriminating? The swings there are open to all and sundry, not one single person is being denied the opportunity to use those swings. Not one single person is barred from using those swings. There is no discrimination.

There are people who for their own reasons cannot use the swings. Thats a shame but it is not discrimination on the part of the government or council.

You don't need an end to discrimination because there isn't any. What you need is help above and beyond what everybody else gets, thats something else entirely. And I have no problem with fighting for that extra help, I just think it helps nobody to use such a loaded term as "discrimination" when it really doesn't apply at all.

That's a bizarre thing to say. The reason we have laws and rights for disabled people is because ''their own reasons'' they have no control overdisable them and it's our job and our government's job to ensure we*enable* them. ''Help beyond what anyone else gets' is required to bring them to a level of basic essential participation that everyone else needs no help to achieve. Your post is the embodiment of discrimination and lack of understanding.

There are laws about access to public facilities and amenities for disabled people and if the law doesn't say that includes facilities of playgrounds, then it should. The lackof provision for diables kids was highlighted by the public who were ignored. If that's not discrimination I dont know what it.

Also, I wasn't aiming to list the struggles disabled people face. I am highlighting a couple that most non dsabled people mightn't be aware of. And not being able to enter buildings, or children not being able to avail of the playground, is significant.

Avatar MIA · 23-09-2017 02:34PM

Widdershins wrote: »

And not being able to enter buildings, or children not being able to avail of the playground, is significant.

Agreed wholeheartedly with this.

bucketybuck · 23-09-2017 02:36PM

Widdershins wrote: »

That's a bizarre thing to say. The reason we have laws and rights for disabled people is because ''their own reasons'' they have no control overdisable them and it's our job and our government's job to ensure we*enable* them. ''Help beyond what anyone else gets' is required to bring them to a level of basic essential participation that everyone else needs no help to achieve. Your post is the embodiment of discrimination and lack of understanding.

You really don't understand the point I was making, do you?

Pherekydes · 23-09-2017 02:45PM

bucketybuck wrote: »

What is the government denying to disabled people that it is giving to me as a non-disabled person?

Mostly, it's just care. The government and the HSE expect the families of those with disabilities to provide 24/7/365 care, without any help, financial or otherwise. People are working themselves to death caring for loved ones with disabilities, and when they're gone the HSE have to step in and take over. If the HSE can pass this responsibility on to other family members then they will and they won't give two sh1ts.

The HSE should take on the responsibility sooner.

Edited to add: the guy mentioned in the OP is Tom Clonan. He is well known and you can google his story and background.

23-09-2017 02:58PM

bucketybuck wrote: »

Disabled people aren't discriminated against. They are not denied anything that isn't also denied to everybody else.

Yes, apart from access to healthcare, employment, transport, housing, education, arts and cultural facilities and events, social and entertainment - apart from those things (and possibly a few that I've forgotten) disabled people aren't discriminated against.

bucketybuck · 23-09-2017 03:00PM

AndrewJRenko wrote: »

Yes, apart from access to healthcare, employment, transport, housing, education, arts and cultural facilities and events, social and entertainment - apart from those things (and possibly a few that I've forgotten) disabled people aren't discriminated against.

Who is doing the discriminating?

People with disabilities & 250,000 carers in Ireland.

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