People with disabilities & 250,000 carers in Ireland.

Annasopra · 24-09-2017 04:04PM

mohawk wrote: »

Regarding housing i.e. independent living verses residential home. There is not a one size fits all solution here. There are so many different types of disabilities which can be mild, moderate or severe. Decisions need to be made on a case by case basis. I know of a guy back home who has severe epilepsy, is deaf, blind, nonverbal and paralyzed. He is unable to feed himself, bathe himself etc. When his parents pass on there is no way on earth he will be able to live in an independent living setting. Where as others I know may have intellectual disabilities but are able to make themselves a cup of tea and a bit of lunch and all they need is someone nearby who can step in and come to their aid if needed.

The other part which makes me really mad is that for some kids if you provide the right interventions now while they are young down the line they would be able to go to college and get jobs. They would then be contributing members of society. The cuts made to the HSE during the recession really have been devastating. This government and all previous governments have been very short-term and lazy with their planning and financing.

Independent community living can and should be offered to everyone including people with severe/profound needs. In fact when we ratify the UNCRPD it will have to be.

http://www.inclusionireland.ie/content/books/1573/independent-supported-living

Annasopra · 24-09-2017 04:13PM

Widdershins wrote: »

That happens in situations where they are the primary carers and the person being cared for doesn't have a mental capacity to make the decision. You must surely be aware that some people are intellectually disabled to that point? Who else could make the decision r.e their living situation?

We have just passed a law completing changing how capacity to make choices is determined and in some cases people with severe and profound intellectual disabilities will be making those choices and not their parents. Which is only right really. I'd hate my parents to decide everything about where I live.

http://www.inclusionireland.ie/capacity
http://frontline-ireland.com/capacity-law-major-review-assisted-decision-making-capacity-act-2015/

Widdershins · 24-09-2017 04:17PM

Joeytheparrot wrote: »

We have just passed a law completing changing how capacity to make choices is determined and in some cases people with severe and profound intellectual disabilities will be making those choices and not their parents. Which is only right really. I'd hate my parents to decide everything about where I live.

http://www.inclusionireland.ie/capacity
http://frontline-ireland.com/capacity-law-major-review-assisted-decision-making-capacity-act-2015/

How will, say, a man with alzheimers mentally functioning on the level of a six year old make this decision? For example, if I asked one such gentleman I know very well, he'd probably spit his false teeth at me or ask what the hell is going on, and that'd be the most coherent sentence for the day.

I don't think you and A.J.R are really thinking about this one.

In situations where the person CAN have an input/complete choice then presumably they already do, with the support of parents/adult children who care for them. Anyone would think we are discussing some sort of control freak relationships, which is a disgusting way to think of family carers.

Annasopra · 24-09-2017 04:32PM

Widdershins wrote: »

How will, say, a man with alzheimers mentally functioning on the level of a six year old make this decision? For example, if I asked one such gentleman I know very well, he'd probably spit his false teeth at me or ask what the hell is going on, and that'd be the most coherent sentence for the day.

I don't think you and A.J.R are really thinking about this one.

In situations where the person CAN have an input/complete choice then presumably they already do, with the support of parents/adult children who care for them. Anyone would think we are discussing some sort of control freak relationships, which is a disgusting way to think of family carers.

There will be a new legal basis where people who may not have the capacity will be assisgned people to support them in making decisions.

http://www.inclusionireland.ie/sites/default/files/attach/basic-page/991/assisted-decision-making-act-factsheet.pdf

http://www.citizensinformationboard.ie/downloads/relate/relate_2016_04.pdf

I actually think you haven't thought this one fully. Some parents/family carers are complete control freaks who want to decide everything their son/daughter does. I have seen this myself. Some - make all the decisions and of course have the best intentions but never really consult or involve their child in decisions. Family carer relationships are complex. They can be wonderful but they can also be very difficult and toxic because the families can also still view their adult children as children. I think it is important to realise that sometimes the person may want something and families often with the best intentions refuse them. Families can also wrap people in cotton wool to the extent they disable them further. I have seen this myself - families refusing to allow relationships, families freaking about a person using public transport when they are perfectly able to.

Widdershins · 24-09-2017 04:37PM

Joeytheparrot wrote: »

There will be a new legal basis where people who may not have the capacity will be assisgned people to support them in making decisions.

http://www.inclusionireland.ie/sites/default/files/attach/basic-page/991/assisted-decision-making-act-factsheet.pdf

http://www.citizensinformationboard.ie/downloads/relate/relate_2016_04.pdf

I actually think you haven't thought this one fully. Some parents/family carers are complete control freaks who want to decide everything their son/daughter does. I have seen this myself. Some - make all the decisions and of course have the best intentions but never really consult or involve their child in decisions. Family carer relationships are complex. They can be wonderful but they can also be very difficult and toxic because the families can also still view their adult children as children. I think it is important to realise that sometimes the person may want something and families often with the best intentions refuse them. Families can also wrap people in cotton wool to the extent they disable them further. I have seen this myself - families refusing to allow relationships, families freaking about a person using public transport when they are perfectly able to.

Well the thread wasn't about dysfunctional families of people with disabilities, or carers with munchausen syndrome, or toxic carers.

The more options available for different people with different needs and preferences, the better. That is all.

24-09-2017 09:12PM

mohawk wrote: »

Regarding housing i.e. independent living verses residential home. There is not a one size fits all solution here. There are so many different types of disabilities which can be mild, moderate or severe. Decisions need to be made on a case by case basis. I know of a guy back home who has severe epilepsy, is deaf, blind, nonverbal and paralyzed. He is unable to feed himself, bathe himself etc. When his parents pass on there is no way on earth he will be able to live in an independent living setting. Where as others I know may have intellectual disabilities but are able to make themselves a cup of tea and a bit of lunch and all they need is someone nearby who can step in and come to their aid if needed.

Independent living does not mean living on your own. There are people in 'independent living' situations with full time live-in support staff, sometimes more than one staff. There are units with 3 or 4 people living together with one bedroom for live-in staff.

mohawk wrote: »

The other part which makes me really mad is that for some kids if you provide the right interventions now while they are young down the line they would be able to go to college and get jobs. They would then be contributing members of society. The cuts made to the HSE during the recession really have been devastating. This government and all previous governments have been very short-term and lazy with their planning and financing.

Yep, that's a big issue.

Widdershins wrote: »

I don't need to, badly run institutions are nothing new and sometimes abuse was rife in them. That doesn't negate the need some people have for that kind of setting, but closely monitored and of a high quality. Alternatively if a full time professional carer/s can be provided to someone living in community settings then that's perfect . It just isn't happening. Some need more care and assistance than they'd get in community care.

The issue isn't about 'badly-run institutions'. In the best-run institutions, the quality of life for residents is still way below what is achievable in independent living scenarios, because it is not institutionalised by definition. There are people in independent living situations with full-time live-in support staff. It does happen. There is no scenario where 'institution' is the best quality of life option.

ahnowbrowncow · 24-09-2017 10:01PM

Joeytheparrot wrote: »

Noone mentioned gender discrimination. I think He outlined the case himself quite well.

http://www.thejournal.ie/readme/tom-clonan-ive-had-enough-we-need-a-campaign-for-our-brothers-and-sisters-disabled-by-our-state-3539218-Aug2017/

http://www.thejournal.ie/readme/tom-clonan-disability-2-3603872-Sep2017/

The OP blamed it on misogyny which is a bit ridiculous.

Tell me how · 24-09-2017 11:17PM

ahnowbrowncow wrote:

The OP blamed it on misogyny which is a bit ridiculous.

He said it was partly misogynistic, due to the large numbers of females working as carers. He didn't say it was the only reason. Far from it.

ahnowbrowncow · 25-09-2017 08:01AM

Tell me how wrote: »

He said it was partly misogynistic, due to the large numbers of females working as carers. He didn't say it was the only reason. Far from it.

When did I say that he said misogyny was the only reason? I'm disagreeing that it's a reason for this father and son's situation. Just because there's large numbers of women in the role does not mean it's misogynistic.
Next you'll be saying that teachers aren't getting the pay rises they're looking for because the majority are female.

Tell me how · 25-09-2017 08:05AM

ahnowbrowncow wrote:

When did I say that he said misogyny was the only reason? I'm disagreeing that it's a reason for this father and son's situation. Just because there's large numbers of women in the role does not mean it's misogynistic. Next you'll be saying that teachers aren't getting the pay rises they're looking for because the majority are female.

Whatever.

Annasopra · 25-09-2017 08:19AM

ahnowbrowncow wrote: »

I'm disagreeing that it's a reason for this father and son's situation.

You are disagreeing with something that nobody said.

ahnowbrowncow · 25-09-2017 08:23AM

Joeytheparrot wrote: »

You are disagreeing with something that nobody said.

Really? Did you not read the OP?

[Deleted User] wrote: »

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)?

Samaris · 25-09-2017 08:25AM

AndrewJRenko wrote: »

The issue isn't about 'badly-run institutions'. In the best-run institutions, the quality of life for residents is still way below what is achievable in independent living scenarios, because it is not institutionalised by definition. There are people in independent living situations with full-time live-in support staff. It does happen. There is no scenario where 'institution' is the best quality of life option.

Ideal, no. Confined to a bed and in need of constant nursing care, perhaps it is the best option. If there is a problem with mental degeneration that can result in the disabled person being aggressive or violent, it can be the only remaining solution, and don't think it's an easy decision to make; it's not. But it's not only children that can need constant care, there's elderly parents too. And mentally disabled people may not be physically disabled.

A third case where it may be the only thing left is if the person is left completely alone. Maybe they never had children and their husband or wife is now dead or is ill themselves and can no longer care for their partner.

I've worked as a carer and seen some of the horribly difficult decisions that have to be made (and the difficulties of both physical care for those that can't move and caring for those with diseases that cause mental degeneration and the loss of the person - be it mum or dad or child - long before their body dies). I've also seen how difficult it can be to get reliable, trained carers. In the UK, you do not necessarily need any qualifications to act as a carer if you're freelance, although I don't know if that's the same here. Despite getting my job (somewhat accidentally, I rather landed in the middle of it rather than went looking for it!) due to that, it always unnerved me a bit that con-artists can so easily get into a very powerful position, both over the ill person, their family and even just that you're working, maybe unsupervised, in the home of a vulnerable person.

Widdershins · 25-09-2017 09:17AM

AndrewJRenko wrote: »

Independent living does not mean living on your own. There are people in 'independent living' situations with full time live-in support staff, sometimes more than one staff. There are units with 3 or 4 people living together with one bedroom for live-in staff.

Yep, that's a big issue.

The issue isn't about 'badly-run institutions'. In the best-run institutions, the quality of life for residents is still way below what is achievable in independent living scenarios, because it is not institutionalised by definition. There are people in independent living situations with full-time live-in support staff. It does happen. There is no scenario where 'institution' is the best quality of life option.

Well, what you're describing to another poster is more along the lines of what I'm saying people need. I hadn't actually intended to defend ''institutions'', just pointing out that live in help is essential for some people. The homes with 3-4 and a couple of helpers always at hand are in very short supply, that's the problem that I'm talking about. BTW a home with 5 people is termed an institution in the Inclusion Ireland document linked by another poster above. It seems to be partly about not having the choice of who you live with.

So yes apparently it does happen but it is very rare, it is what some need because living alone with people 'dropping by' on a schedule is not enough for them. The very large institutions seem to be being started up again, article in the news not long ago. Nobody would argue for them over the former, surely. Except the government.

25-09-2017 09:26PM

Widdershins wrote: »

Well, what you're describing to another poster is more along the lines of what I'm saying people need. I hadn't actually intended to defend ''institutions'', just pointing out that live in help is essential for some people. The homes with 3-4 and a couple of helpers always at hand are in very short supply, that's the problem that I'm talking about. BTW a home with 5 people is termed an institution in the Inclusion Ireland document linked by another poster above. It seems to be partly about not having the choice of who you live with.

So yes apparently it does happen but it is very rare, it is what some need because living alone with people 'dropping by' on a schedule is not enough for them. The very large institutions seem to be being started up again, article in the news not long ago. Nobody would argue for them over the former, surely. Except the government.

Yep, that's the problem - not enough of those units are available, and lots more are needed.

Samaris wrote: »

Ideal, no. Confined to a bed and in need of constant nursing care, perhaps it is the best option. If there is a problem with mental degeneration that can result in the disabled person being aggressive or violent, it can be the only remaining solution, and don't think it's an easy decision to make; it's not. But it's not only children that can need constant care, there's elderly parents too. And mentally disabled people may not be physically disabled.

There are very, very few people who need that intense level of medical care day to day. Many people with disabilities are over-cared for today, with trained nurses doing personal care support that doesn't reflect their training or expertise. We need to move away from this service.

Samaris wrote: »

A third case where it may be the only thing left is if the person is left completely alone. Maybe they never had children and their husband or wife is now dead or is ill themselves and can no longer care for their partner.

This really shouldn't have anything to do with it. It doesn't matter whether they have zero family or huge family, they are still entitled to live a life of their own choosing.

Samaris wrote: »

I've worked as a carer and seen some of the horribly difficult decisions that have to be made (and the difficulties of both physical care for those that can't move and caring for those with diseases that cause mental degeneration and the loss of the person - be it mum or dad or child - long before their body dies). I've also seen how difficult it can be to get reliable, trained carers. In the UK, you do not necessarily need any qualifications to act as a carer if you're freelance, although I don't know if that's the same here. Despite getting my job (somewhat accidentally, I rather landed in the middle of it rather than went looking for it!) due to that, it always unnerved me a bit that con-artists can so easily get into a very powerful position, both over the ill person, their family and even just that you're working, maybe unsupervised, in the home of a vulnerable person.

Yes, it is a problem area. It is seen as low skilled work, and many such workers would be at the bottom of the employment ladder. I've seen recent immigrants will poor language skills in these roles, with some confusion resulting between client and care assistant as a result. There are no regulations around these services afaik, just the provider's own rules.

kupus · 25-09-2017 10:14PM

Joeytheparrot wrote: »

Independent community living can and should be offered to everyone including people with severe/profound needs. In fact when we ratify the UNCRPD it will have to be.

http://www.inclusionireland.ie/content/books/1573/independent-supported-living

Do you know what indo living is Joey in its basic form?

Its an abdication of responsibility from government to provide for its citizens.

Instead it farms it out to a family member and lets them bear the costs at a cheaper fraction of the price than a purpose built unit equipped with all the needs the person wants.

They cut down on employment costs, insurance, bills, water, maintenance, WAGES, etc etc etc.
Don't worry another time cycle will come along and the gov will want people BACK in specially built multi units as there will be money to be made in the
construction and development of them and then the running of them. But that's years down the line.
For now the soup du jour is home carers.

The important question you need to ask is where is the money that is saved going?

Billy86 · 25-09-2017 10:21PM

One kind of major issue - in order to make these services better and more readily available, the government would have to increase tax. I wouldn't object to that at all, but I have a feeling that most would to the extent that a tax increase is the quickest possible way out of office this side of the third story window.

25-09-2017 10:25PM

kupus wrote: »

Do you know what indo living is Joey in its basic form?

Its an abdication of responsibility from government to provide for its citizens.

Instead it farms it out to a family member and lets them bear the costs at a cheaper fraction of the price than a purpose built unit equipped with all the needs the person wants.

Independent living does NOT involve care by/from family members - quite the opposite. It puts the person in control of their own services, and provides the resources they need to accommodate their disability.

kupus · 25-09-2017 10:36PM

Billy86 wrote: »

One kind of major issue - in order to make these services better and more readily available, the government would have to increase tax. I wouldn't object to that at all, but I have a feeling that most would to the extent that a tax increase is the quickest possible way out of office this side of the third story window.

That is always the simple solution. But irish civil servants dont do simple solutions because it is not in their interests.
All you have to do is look at the rte thread.
Its like when if you put the boot into the hse, all their supporters are out en masse. Some of them work in it, others have family working in it.

Same goes for the justice industry, and yes its an industry. All the lawyers come out of the wood work like flies on a sh1te...

Too many people with too much to lose and have a vested interest in keeping things going for themselves.

Ireland needs somebody strong in power that can tell folks to go f themselves if need be.

Charlie Haughey could have been that man, but power corrupts, absloute power, well.

kupus · 25-09-2017 10:42PM

AndrewJRenko wrote: »

Independent living does NOT involve care by/from family members - quite the opposite. It puts the person in control of their own services, and provides the resources they need to accommodate their disability.

So it cuts down the number of people employed to look after them?
So it is basically privatising the disability of the person.

Tigger · 25-09-2017 10:46PM

250,000 carers
there is 4.7 million so 1in 19 people is a carer?
how is that possaible it seems a crazy number

25-09-2017 10:49PM

kupus wrote: »

So it cuts down the number of people employed to look after them?
So it is basically privatising the disability of the person.

Often it can involve more people involved in care, because you lose the economies of scale that you get in an institution - but it depends on the person's individual needs and wants.

The question of privatisation or not is a delivery question. It doesn't really change the current situation, where institutional care is privatised to 'charaties' which are really just large businesses anyway.

People with disabilities & 250,000 carers in Ireland.

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