The end of PWDI ???

martic

http://www.pwdi.ie/news-and-events/single-view/article/people-with-disabilities-are-shattered?cHash=10b2963a8ce8adf72d66cd16bbcc304c


As a parent of a child with special needs I have seen the work that this organisation provides and think it is unacceptable for this to happen.:mad:

aare

Personally I am delighted.

You see PWDI was mandated to strictly prioritise representing the voices of *people with disabilities*, not their parents, not their service providers, actual *people with disabilities*.

This year alone they partnered in two events with parents organisations and commercial service providers, to promote those same service providers in a significant conflict of interest with the voices and issues of Adult Autistics .

ALL complaint and objections to the office and the board were just ignored - given the "silent treatment".

Now, I understand the issues of parents of Autistics (and ALL special needs kids), really I do, and sympathise, and ...but you have LOADS of organisations to represent you, support you, advocate for you.

We have nobody to speak for *US*, say what *WE* need to say, or support us in speaking for ourselves (and often, sadly in having no recource but challenge the Autism Organisations that exclude, misrepresent and exploit us), in the whole country...except PWDI. Who gave me a personal undertaking in 2007 that they could be counted on to support, represent, and fight for autistic autonomy.

How callously, and easily they betrayed us...

There is a rumour that they held these two inappropriate promotional events because they had not managed to spend their full budget for the year and were afraid it would be clawed back or reduced. I do not know how true that is...

I do know that one of the service providers they promoted (against the declared best interests of many of us) has a £35million pa UK parent company...and the other interests they promoted are charging the HSE hundreds of pounds an hour for some services.

I have a nasty feeling that this wasn't just a fit of "lets scr*w the autistics in 2011" and other groups of disabled people have been treated just as shabbily by PWDI and then brushed under the carpet where nobody can see.

...and I know that there are a lot of the disabled people that PWDI was mandated to represent who could have put funds to far better use than promoting and endorsing two incredibly weathly service providers...but they did not get a chance.

Now for the good news...
All that has happened is that PWDI are not recieving any more funding...but it doesn't have to mean the end of PWDI unless you want it too.

Let me copy you a section from one of my private emails on this:

***
Y’know, in the cold light of day, PWDI COULD, realistically, continue unfunded through the networks and achieve just as much, maybe more, without the free junkets and the self perpetuating, useless and obstructive admin office...it just needs a website and a phoneline...and is there any really *GOOD* reason why any kind of disabled people could not man a redirected phoneline, and perform minimal admin duties, from home under a CE scheme or similar? What would that cost? 30k in CE payments and the line itself? And, in a pinch, if personal autonomy and self definitions matter the CE payments could be dispensed with and the phoneline redirect rostered through several people. Losing the hobby freeloaders can only be a benefit.

SNPA is running on a similar model unfunded for the past two years.

Set up a website with conference area for members only – get some corporate sponsors (there are even plenty of neutral, faintly ethical people who would jump at cheap PR to the disabled...motor companies who make people carriers, vantastic et al for starters...the banks need “caring PR” too, and, as you may realise, a few grand ain’t nothing to them).

Any good reason not to try and make it happen? No more than you, (if for different reasons) I can’t take any great part in any of this, but is there anything we could do to start the ball rolling?
***

Now, over to you...

aare

As a codicil, a representative of PWDI that I will not name, has just informed me that PWDI cannot possibly continue without funds because even €10 is a lot of money to find for disabled people. In rural areas transport to meeting to be able to speak for themselves is almost impossible...all of which I agree.

When I asked him how spending PWDI's funding on promoting very wealthy service providers alleviated this situation he first tried being very dishonest and manipulative, then when that did not work simply became rude and abusive.

Most of the (pretty creative) personal abuse was aimed at me for the very minor point objecting to being asked if I would be attending a PWDI conference as a "parent or service provider". You would not ask a blind person, or a person with spina bifida that...but apparently it is ok to say that to an autistic according to someone very high indeed in PWDI (which does not, incidentally, stand for "Parents and Service Providers with Disabilities Ireland"). The politest word was "nitpicking". This person was not interested in what the problem was, or how Autistic people had been betrayed by PWDI, he just wanted to find a way to shout it down.

My actual point, of course, was nothing to do with that, but rather, what in the name of heaven PWDI was doing wasting funds on running a conferance with and endorsing a wealthy service provider at all...the fact that the conferance was targeted at "parents and service providers" not Autistics was just adding insult to injury.

I do know that, when it began PWDI was a fantastic organisation, but what it has become since is a simple disgrace.

I sincerely hope that the disabled people who *DO* really care about standing up for their own rights and the rights of others will recognise that their voices are important enough to them to be raised even when it costs a few pounds to do so will carry on...

...and the few who were riding their own personal gravy train to a sense of power and importance at the expense of the state will fade into obscurity for good.

email

I would like to respond to the above posts, but can I ask the name of parents organisations and commercial service providers that were mentioned above first?

aare

It is all public domain:

Tullow Spring 2011

http://www.asdi.ie a predominantly residential service provider and Irish subsidiary of http://www.autisminitiatives.org/ a relatively new uk residential service provider who have a turnover of £35million pa, mostly from the state. ASDI also have at least one director in common with Autism Trust Ireland (a residential service provider), Autism Rights and Equality Alliance (who, rather misleadingly, function without mandate or consultation with Autistic adults, and refuse to answer any quieries about this) Irish Autism Action who also function without mandate or consultation with autistic adults and are a parent lead organisation in a situation of longstanding mutual hostility with many autonomous Autistic Adults.

All complaints and queries about this made to PWDI remain unanswered to this day.

There is another unfortunate aspect to ASDI in that the current chairman of their UK parent organisation has spent most of his career working in adoption in the UK ( http://www.autisminitiatives.org/index.php?option=com_k2&view=item&layout=item&id=81&Itemid=67 ) and still sits on several adoption boards. Since the controversial UK Adoption Act 2002 co-erced adoption has been legal in the UK to the extent that local authorities can be penalised if they fail to meet central government quotas. This has lead to a situation where several disabled organisations are claiming that a disproportionate number of children are being seized from disabled parents and placed for adoption without their consent on the premise that their disability in itself is a risk of future emotional damage to the child.

Whatever the rights and wrongs of this situation it is an issue where PWDI, as the voice of disabled people, should stand firmly insupport of the basic human rights of disabled people to parent their own children, not in a conflict of interest, through alliance, however indirect with those who may be instrumental in facillitating potential abuses.

Betrayal does not get any bigger than that, and whether it was deliberate or not is irrelevant.


Kildare - Autumn 2011

Parent's Organisation = Loffa - nothing wrong with them as far as I know, but they have plenty of parents representative groups to support and enable them.

Autistic adults have no-one at all to support and facillitate them and in accord with PWDI's charter and mission statement should have absolute priority with PWDI who undertake to give all disabled people the following:
• A voice in the decision making process that affects you
• Improved lobbying and advocacy skills
• The full resources of a national cross-disability organisation
• The support of your local network and other local disability organisation in addressing local issues
• The right to communicate using your chosen method or format

Service Provider = http://www.cattsireland.com/ again, nothing wrong with them that I know of but they do make an healthy profit out of selling Autism Services and are IN NO WAY the voice of Autistic people, and no more relevant to them than Tesco (nothing wrong with them, some of us shop there, but they do not speak for us, we do, however politically inconvenient it may be to acknowledge and include that)

PWDI is (or was) specifically set up to be the voice of disabled people, not parents and service providers, however worthy, or reprehensible, is also irrelevant. If there was nothing to be said directly on behalf of Autistic people and their best interests, in their own right, in 2011, then any funds and efforts expended by PWDI should have been deployed on representing the voices and best interests of another group of disabled people, and I am reliably assured that there are plenty of them who had a great deal to say that PWDI did nothing to assist them in presenting.

Instead they gave their resources to promoting and endorsing service providers that many autistic people need to challenge and be protected from.

That is is as unjustifiable as it is unforgiveable.

aare

Just to add a small point (rather than editing).

PWDI was set up to be something akin to a representative Union for people with disabilities, because of that, *ANY* affiliation with a parents' group or service provider is a conflict of interest, not just in terms of past and present issues but also in terms of future issues that may arise wherein a person with a disability needs the support of PWDI in challenging a service provider or organisation.

This is particularly important in terms of the new generation of residential and "supported accomodation" service providers springing up. I have already seen some very serious complaints, where disabled people need the dedicated support of a union with no conflict of interest just to support them in fighting for basic human rights.

SerialComplaint

I don't think that PWDI ever achieved the goal of becoming a broad representative body. While many of the individuals involved at voluntary level were effective and committed, there were very small numbers of such individuals. It was the same old faces involved at every event. I spoke to one PWDI member over the summer who mentioned that when they sent out surveys for feedback, it was the same, very small number of PWDI members who responded to surveys.

I'm not sure that very many people with disabilities got the importance of having a representative voice, independent of service providers, as the line between representative organisations and service providers is quite blurred (IWA, NCBI etc).

aare

SerialComplaint wrote: »

I don't think that PWDI ever achieved the goal of becoming a broad representative body. While many of the individuals involved at voluntary level were effective and committed, there were very small numbers of such individuals. It was the same old faces involved at every event. I spoke to one PWDI member over the summer who mentioned that when they sent out surveys for feedback, it was the same, very small number of PWDI members who responded to surveys.

I'm not sure that very many people with disabilities got the importance of having a representative voice, independent of service providers, as the line between representative organisations and service providers is quite blurred (IWA, NCBI etc).

I think you are raising the single most important, neutral point at issue here...or I suppose, more correctly, it is a double point.

On one hand you have a small group of people steadily hijacking PWDI away from representing the needs of disabled people towards their own agenda, alliances and issues.

For instance, the current chairman is NW regional head of the Irish Association of Supported Employment a body that numerous disabled people had issues that needed raising with over time, and they needed PWDI to be there supporting and facillitating them in doing that. IASE also have a vested interest in the recent move towards combining residential services with supported employment that has an huge potential for abuse and exploitation. Disabled people need their union to be there monitoring that on THEIR behalf, not the service providers, with no conflict of interest.

But they could not do that without the *OTHER* hand, where too many disabled people are totally apathetic about standing up and making their voices heard.

Part of the reason for this is that for generations we have supported a maternalistic culture that has us all (disabled or not) conditioned to a blind faith that whatever the problem, there is a charitable "they" better equipped than us to deal with it combined with an irrational fear of challenging "they" whatever the evidence of our own eyes and ears.

(The "they" in question originated in the religious, but have expanded a lot since and become far more secular, though the dynamic stays the same.)

That is how we have had Magdelen Laundries, Industrial Schools etc...because "they" were taking care of it, and what would we know better than "they".

Though it is slowly getting better, our culture still tends to infantilise the disabled and in so doing consigns us much more firmly than anyone else, to the lifelong care of "They", even in in the most damaging place of all, our own minds...and "they" play that to the hilt to perpetuate their existance and reinforce their power bases, disabling us as the effective adults we can be as well...

...and we are conditioned to sit there and suck it up while thanking them for it and telling everybody how wonderful they are...while squinting our eyes to make sure we never catch an unnerving sight of the unpalatable truth of half the things they are doing in our names and with our lives.

We are trained to be just too scared to break out of that, give the two fingers to "they" and say what we really think and need...because if we do "they" will turn from or upon us and we will lose any little we have.

The gamble of self definition is just too intimidating....and it is worse for parents groups, because however frightening it feels to gamble with your own life, you can multiply that by 10 to get an idea of how it feels to gamble with your child's...and behind the scenes the organisations are not above pretty much spelling out that is what you will be doing.

If we, as disabled people, are ever going to have the lives we merit and deserve we are going to have to break that cycle...because you may be sure "they" are not going to do it for us...because "they" would have too much to lose. We need to take our courage in our hands and stand together to impose our independent, impartial overriding control upon the disability sector, which, at the end of the day, is still (rather generously) funded to serve *US*, not the other way around.

Nothing prevents PWDI from continuing as a voluntary body...they have well over €400k in assets (150k of which is cash at hand) to help them do that at this point in time.

Perhaps as a voluntary body PWDI will stop serving "they" and start serving *US* instead?

But *WE* are the only people who can make that happen. The choice is ours.

Scruffles

aare,
dont think have understood a lot of the words here,and will apologise if it sounds like am reading a different post altogether,but coud not agree more on making the PDWI an independant group-have it run by as many disabled people as possible.
-are there any grants available in ireland for community groups, anything disability related this may come under? what about getting charity status and having a paypal setup for donations?


have never heard of the PDWI before but just the name sounds like it is quite far removed from the disabled community of today,as the common belief amongst many of us is not to use 'people first' language [=a person with disability vs a disabled person].


PDWI as it is sound like they are going the way of americas 'autism speaks' [who not only mock those of us whom are non verbal/speech impaired with their name and beliefs that we are diseased and broken],they spend most of their money on researching cures instead of supporting existing autistics,nor do autistics work for them,yet they think they and all the parents who speak for us can advocate for american autistics.


as for autism initiatives,they are hypocrites as well,itd be nice to know where they spend their money as according to them not very long ago; they only supported the lighest end of the spectrum,no idea whether they have changed or not.
-a few years ago was living in a council run LD residential home and was visited by AI all the way from their liverpool office for an assessment, found out not long later that was turned down for support by them as they only supported people in the high functioning and 'non challenging' range,the NAS didnt have a problem with supporting.


irish people shoud pester the NAS to move their organisation all over the country,as they are very good on the advocacy side with many autistics working for them to.
though that only helps with autism and not the entire disability spectrum.

aare

Scruffles wrote: »

aare,
dont think have understood a lot of the words here,and will apologise if it sounds like am reading a different post altogether,but coud not agree more on making the PDWI an independant group-have it run by as many disabled people as possible.
-are there any grants available in ireland for community groups, anything disability related this may come under? what about getting charity status and having a paypal setup for donations?


have never heard of the PDWI before but just the name sounds like it is quite far removed from the disabled community of today,as the common belief amongst many of us is not to use 'people first' language [=a person with disability vs a disabled person].


PDWI as it is sound like they are going the way of americas 'autism speaks' [who not only mock those of us whom are non verbal/speech impaired with their name and beliefs that we are diseased and broken],they spend most of their money on researching cures instead of supporting existing autistics,nor do autistics work for them,yet they think they and all the parents who speak for us can advocate for american autistics.

Gotta quote your WHOLE post and bold it, because I think you have actually succeeded in understanding me better than I understand myself and putting it all so much more clearly than I ever could...

There are SO many ways to fund this as an independent voluntary organisation.

Apart from grants (you always seem to have to have and propitiate the right contacts to get those - the last round of Genio grants were surreal, I doubt if 10% of that money will actually help, enable or include real disabled people).

There are loads of politically neutral potential corporate sponsors who market to the disabled community...Nissan and Renault for starters...they want to sell us people carriers (and other vehicles, of course), and we are a nice big market...but they have no vested interest in intefering in rights issues. Tesco and Dunnes want us to shop there, BOI and AIB would like us to stop glaring balefully at them even if we do not actually open an account...

The money we need to have a real independent representative union is a drop in the ocean to any of them. They would pay more for a TV ad.

I also think that if the general public were to see us standing up and DOING IT FOR OURSELVES they would be a lot happier to support us than a lot of the traditional charities.

...and yes..."PWDI" is not a nice, modern, vibrant image - just another institution...who needs 'em?

Scruffles wrote: »

as for autism initiatives,they are hypocrites as well,itd be nice to know where they spend their money as according to them not very long ago; they only supported the lighest end of the spectrum,no idea whether they have changed or not.
-a few years ago was living in a council run LD residential home and was visited by AI all the way from their liverpool office for an assessment, found out not long later that was turned down for support by them as they only supported people in the high functioning and 'non challenging' range,the NAS didnt have a problem with supporting.


irish people shoud pester the NAS to move their organisation all over the country,as they are very good on the advocacy side with many autistics working for them to.
though that only helps with autism and not the entire disability spectrum.

In Ireland, rather alarmingly,AI are claiming to market residential based services to a lower end of the Spectrum. Any way I look at it, what they seem to actually be doing is follow the pattern set by Aspire of trying to establish a need for lifelong residential services for the highest functioning, lowest maintenance part of the spectrum (who should, and need to be, encouraged to maximum independence instead) and then taking advantage of the property slump to provide those residential services at minimal cost to themselves and maximum cost to the state...and then they are hoping to employ the same people in commercially viable enterprises...so that their whole lives are controlled and dictated by ASDI...and nobody ever lets them have permission to be adults with adult lives...

To me that is appalling. I wouldn't trust them near my life and you probably had a very lucky escape! They, and the monopoly they are building scare me silly...and PWDI...the organisation that I SHOULD be able to turn to to represent and protect my interests from them could not wait to hop into bed with them and promote them...

But once something like that wakes you up and opens your eyes you start to see it is just part of a pattern in everything else the organisation do. I wanted to be wrong, I wanted PWDI to be everything they claimed to be...but no...

I have never been 100% happy with NAS...but nowhere is it written that we cannot make something a little better.

I have also felt that because the social disability of Autism makes participation in the existing networks (that suit everybody else and if it isn't broke, don't fix it) effectively impossible for most autistics there should be a seperate point of access that accomodates and minimises the effect of our social disabilities so that we can fully participate in the new representative organisation as we never could in PWDI.

There may be people with other issues who need similar accomodation, but that is for them to speak up and say, not me. Because WHATEVER form the new organisation takes must be aimed at maximising the number of people who can effectively participate...

aare

Just a quick codicil, but an important one I think. When we rebuild PWDI as a wholly voluntary organisation (and if nobody else bothers to do that I will, and if I do that my inner demons will wake up and appoint myself CEO, and trust me, NOBODY wants to go there ) nobody should be able to hold office with a conflict of interest including, but not limited to:

• Employment with a disability service provider
• Public Office
• Employment in the Public Service
• Employment or Office in a Disability Organisation
• Self employment in the disability sector

People in all those positions already have a voice, and influence, time to give some influence to the voiceless ones who have been stuck in the shadows while other people dictate and define their lives for decades.

Big D Power

Two perspectives about PWDI - One way I'm saddened to see DOJE stopping the fund to PWDI at this time. Other way, it might be a good thing given the information I just observed in this thread that it might be a wake up call with some comments saying that PWDI did not function as they should do so.

The whole problem is that we have far too many disability organisations in Ireland - a really small nation. Beside PWDI, we have DFI, Not for Profit Business, CIL, DESSA, Genio, NDA and so on. Plus we have IWA, Rehab, DeafHear, NCBI, CRC, Inclusion Ireland and so on controlling the vast funding from the government. I dont see much benefit to ordinary PWD in Ireland. When the Strategy for Equality was published in 1995, it has 403 recommendations that are supposed to change us, PWD, for better with greater voice in our rights and more control of funds and services,

Instead, we have gone backward dramatically, especially the last few years. Non-disabled led service providers are controlling us, PWD. Disability Act 2005 did little to provide us with rights. No one in Ireland are acively lobbying for ratification on the Convention on the Rights of PWD.

Government, particularly, HSE should consider reviewing all funds to disability organisations. Majority of these funds goes to non-disabled administrative staff who knows nothing about PWD. Worse still, greedy and fat cat executives are getting the salarly of €200k or so. None of them have got a clue about PWD. So, government should either stop funding or cut down some to some of the disablity organisations that did little or nothing to PWD. Lets focus on our core essential needs and support and they are to be led by PWD.

If DOJE can do that PWDI, then why not others to to other disability organisations who are greedy and controlling and damaging our sector.

SerialComplaint

Big D Power wrote: »

Government, particularly, HSE should consider reviewing all funds to disability organisations.

They're on it. There has been a huge amount of work done on a value-for-money review of the sector by Dept Health, and the public consultation on the findings of this review has just closed; http://www.dohc.ie/consultations/closed/effectiveness_disability_services/

This should be driving some new policy to move towards a 'money follows the end user' model, and a move away from the block allocations to service providers.

Big D Power

@ Serial Complaint

I know and I sent in the submission that is pro-PWD policy but will they take it on board. I wonder who really control and have a final say in the "new" policy. We have been there and done that but always the same old news - power of non-disabled service providers and policy makers will still control us at the end of the day.....

aare

I was thinking about your post in the bath Big D...

First off, let me say that even when I posted here, or picked up the phone on Friday and made a call I dreaded so much I put it iff for 6 months, I desperately wanted someone to pop up and prove me to be, at least, slightly wrong...

But they didn't...and it is the same picture everywhere, other organisations are detaching and distancing from the whole issue in true Kafkaesque style...very few people have the courage to speak openly against PWDI yet, but nobody has found a way to defend them...or any grounds to defend them upon. That silence (apart from 22 colourful variations on "you nitpicking objectionable person" yelled in succesion) speaks volumes.

I think the bottom line is this; somewhere along the way disability and disadvantage became a lucrative, marketable commodity...and "people" were dehumanised to the extent of being just the unit in which that commodity is measured.

A whole industry sprang up around promoting the idea of paying people to claim to help people, and paying people to persuade other people to accept people on equal terms, despite, often, never learning how to do so themselves.

(Pobal were briefed to allocate grants for projects aimed at promoting social inclusion, however, they not only had no system of monitoring whether those projects, in truth, even practiced inclusion, they also had no structure in place to deal with compliance complaints.)

There are organisations that literally *ONLY* exist as admin layers...totally superfluous to any and all of the needs of the people they claim to serve. There are other organisations who spend more on fundraising than they take in.

"Not for Profit" looks a lot less like the milk of human kindness when you see the kind of salaries, frequently self appointed people have syphoned off before the books are balanced.

There are not for profits running on grossly overcharging for nominal services (much harder to pull the funding on as they often have vulnerable service users whose very vulnerability can be used as an human shield to ringfence their income).

Something has to give.

aare

I was quite happy with the VFM review report, despite seeing so many submissions made by some of the worst offenders, the main points got across.

There was a slightly different review on the future of disability policy this year. The results of that should be interesting when they come out.

SerialComplaint

Big D Power wrote: »

@ Serial Complaint

I know and I sent in the submission that is pro-PWD policy but will they take it on board. I wonder who really control and have a final say in the "new" policy. We have been there and done that but always the same old news - power of non-disabled service providers and policy makers will still control us at the end of the day.....

I guess the final say in the new policy is down to the Minister, Kathleen Lynch. She's got very clear messages on the VFM side, which showed up huge variations in the cost per person for residential care, with no correlation on severity of disability.

Having said that, to switch from the current model to a 'money follows the user' model is a huge change, and could take a generation to happen. This will require new ways to commission services, and there is a very big risk that cheapest cost would win out over quality of service. There are major issues about how you measure quality of services in these scenarios.

aare

I think that, no matter how desperately needed, any kind of change is going to be very difficult to implement.

There are residential (and other) services that need to be closed down as a matter of basic human rights that are, nonetheless the only home, or familiarity vulnerable people have known for years. People are institutionalised and conditioned to accept, and even embrace, the unacceptable...

You cannot perpetuate that situation, nor send anybody else into it, but you cannot just take it away overnight.

There are generations of, particularly, but not only, mentally and intellectually disabled people who have been infantilised and raised to suspend all critical thinking and trust whoever they are told to trust, think whatever they are told to think, want whatever they are told to want. It made them easier and more profitable to contain. It will be a very long time, if ever, before that can change for many of them. So I am not too sure how well any proposed model of individualised funding will work in that context either.

But it has to be a change for the better.

aare

As the first half of the budget is read on Monday PWDI will be spending some of their last remaining funds on a promotional lunch on behalf of parents, service providers and well heeled Autism organisations in the Radisson Blu in Athlone.

http://irishautismaction.blogspot.com/2011/11/autism-information-event-athlone.html

I find it telling that, at this point in time they are not identifying their speakers.

I understand that the Irish Congress of Trades Unions have, thus far, resisted the temptation to host a similar luncheon on behalf of the Irish Business and Employers Confederation...but who knows? They may cave in over the weekend? :rolleyes:

Understand me, I am *NOT* in any way adverse to parents of Autistics, or any special needs children fighting their own case, and presenting their own issues...for as long as they have issues they need to present...which does not have a handy cut off point when their child reaches 18. I have supported them and given my own time, at my own expense, to doing a certain amount of work on their issues, and will happily do so again should the need arise. But People with Disabilities Ireland was created to speak for, and represent people with disabilities.

I know there are autistics who are, realistically, unable to speak for themselves too, but there are plenty more who can who have been overlooked, discouraged, and rendered voiceless in every aspect of their own furtures and treatment for far too long at huge cost to their quality of life.

Perhaps I shouldn't be so inflexible? Perhaps I should get intouch with Special Needs Parents Association and see if they will host a four star "information luncheon" for Autistics to present their case. After all, they also have active nationwide networks, how hard could it be?

Except, of course they have not, to date, received any funding, so they probably cannot afford it, and it doesn't seem fair to embarass them by asking.

If I knew of one single Autism organisation in the country with an emphasis on something more useful than justifying their own existance, and promoting their own importance, without even a passing reference to the real voices and needs of Autistic people I would happily take them out on the razzle at my own expense, but I do not see any risk of having to put my money where my mouth is any time soon.

...and good, bad or indifferent (all three exist) service providers REALLY SHOULD be paying for their own PR and promotions, just like any other profitable business.

Government funding should go to the people who actually need it instead.

PS Better add a link to SNPA - http://www.specialneedsparents.ie/ - because in my opinion, this group, that basically kicked themselves off over the past 18 months, self funded, with tremendous impact, are proof the PWDI CAN continue to exist without funding, if it matters enough, and, if not, why should it matter to anyone else?

SerialComplaint

aare wrote: »

I understand that the Irish Congress of Trades Unions have, thus far, resisted the temptation to host a similar luncheon on behalf of the Irish Business and Employers Confederation...but who knows?

ROFL.

aare

I have just discovered something people should be aware of.

PWDI Westmeath (whole will be hosting next Monday's free lunch to promote well-heeled Autism Service Providers and parents organisations in the **** Radisson Blu Hotel in Athlone) ALSO receive direct funding from the HSE:
http://www.pwdiwestmeath.ie/History.html

I do not think they even have to file an account with CRO of that, they do not seem to be incorporated. But just how much government money IN ADDITION TO the withdrawn grant is going into PWDI, and what seems to me a completely distorted set of priorities concerning the real needs of disabled people?

Even when people with disabilities (including Autism) are too seriously disabled to be able to express themselves, representation from an organisation that clearly prioritises the views of service providers and parents organisations, and has an additional vested interest in promoting the interests and views of the HSE is certainly not the right answer.

ElectraBlue

Excellent thread.

A lot of disability organisations and 'real people with disabilities' who are well able to speak for themselves (like myself) have voiced dissatisfaction and questions at the purpose of PwDI over the past 10-15 years.

From what I see, and I've attended several events by PwDI: its all show, talk, glossy publications and administration. No action, no direct support, no representative on public issues, access, health matters etc. It was galling to see so many essential services struggling to provide direct services with cuts and this organisation and all its luxury conferences serving free 5 course lunches...

I was aware of the DoJE funding, and now HSE too on top of this?!?! :eek: Hope the HSE follows suit and cuts them too.

They are no loss to us.

aare

ElectraBlue wrote: »

It was galling to see so many essential services struggling to provide direct services with cuts and this organisation and all its luxury conferences serving free 5 course lunches...

I can't help noticing that some of the more extreme and vocal protesters against the cut were pretty much habituated to using PWDI as a free luncheon/social club.

Ok, fine, but not until you can also fund essential services and resources first...