Saturday, 31 July 2010

Autism NI/Autism Ulster and its PAL

Sorry folks this is going to be a long one, so many issues involved here and in usual Northern Ireland style, the politics are confusing to the untrained eye. I will attempt to explain.

The Parent Autism Lobby (PAL) was launched in July 2009 by the charity Autism NI/Autism Ulster. (see page 3 here: www.autismni.org/news/ebulletinJulyAugust09.pdf. )

I am not sure why AutismNI/Autism Ulster felt the need to create a separate lobby group of its own existing members to separately represent parents. It could be that parents are not being heard within the charity. The Charity claims to have 18 branches across Northern Ireland, branches made up of parents. There are only 1.8 million people in Northern Ireland, so that is one branch per 100,000 people. The rate of autism in Northern Ireland is as yet unknown, but let's say it's 1 in 100. So each branch could serve a potential 1000 members. That's a lot of people, and a lot of voices. Why the need for PAL? Isn't AutismNI/AutismUlster providing a platform for all those voices?

The PAL group was formed at the same time as the launch of the new Northern Ireland Regional Autistic Spectrum Disorder Network (RASDN) in June 2009 www.northernireland.gov.uk/news/news-dhssps/news-dhssps-june-2009/news-dhssps-29062009-health-minister-launches.htm )

Until now, there has never been a province wide autism strategy like the RASDN. Previously, no one was working together. From reading about the RASDN (see link here: www.hscboard.hscni.net/ASD/ASD%20Aim%20objectives%20and%20membership.html )the cosy relationships between some voluntaries and the statutory might well be coming to an end.

It's not the voluntary sector's fault that much of the onus of delivering worthwhile services fell to some of them. The statutory sector abrogated their responsibilities to our kids long ago, preferring to just 'throw' money at the voluntary sector. What service does your child get that is being provided by a Trust that has been useful? Probably not much. Your child receives his/her diagnosis from the Trust (unless you had to go private due to waiting lists). That is usually where their help ends. What they do after that is up to them and as a parent, the maze one has to go to find and access useful help is abominable. Depending on where you live, what you know, and how vocal you are, you may or may not get what your child needs.

Thanks to a forward thinking Health Minister a new autism strategy for Northern Ireland was developed (see here: www.dhsspsni.gov.uk/asd-strategic-action-plan.pdf ) Presently, this strategy is being hammered out and will be rolled out across the province to establish standardised services, services that have been formed not only by medical and education personnel, but by parents and carers. I think this is probably unique within the UK and for Northern Ireland it is a huge step forward, one that has been a long time coming considering the dreadful state of affairs that have existed here regarding autism.

What has this got to do with PAL? Well, I am guessing (purely my opinion) that the powers that be at Autism NI/Autism Ulster (the largest autism charity in Northern Ireland, supported with Health & Social Services Trust funding ) wanted their 'voice'  heard.

PAL, consisting of card carrying committee members of the AutismNI/Autism Ulster charity (for example - David Heatley, Vice Chair, Autism NI, and Anne Marie McCullough, AutismNI Belfast Chapter) quickly formed to present themselves as only 'parents'. I think, potentially, as only parents they might separately become members of the RASDN and more importantly, they could 'separately' lobby against it. These PAL members probably wouldn't be able to join the RASDN with their AutismNI hats on but they could do so if they were simply parents. Or maybe they formed PAL to create the illusion that they as parents, weren't happy with the RASDN. Possibly, they formed to bolster the illusion that parents are in support of Autism Legislation (Autism Act). PAL has publicly stated it supports legislation regarding autism repeatedly and across Northern Ireland.

In this regard, they (PAL and AutismNI) have continuously lobbied MLA's (mostly the DUP, notably ex MLA Iris Robinson) to the point where a motion was brought before Stormont on 28 June to launch an enquiry into the RASDN and it's work so far. See here for a transcript of those proceedings: ( http://www.niassembly.gov.uk/record/reports2009/100628.htm ) Scroll down 1/10th of the document to 'Private Members Business. This is pure and unadulterated politics.

In his opening statement, DUP MLA Jonathan Craig states, "That this Assembly calls on the Minister of Health, Social Services and Public Safety to instigate a review into the performance of the Regional Autistic Spectrum Disorder Network Group, including consideration of its appointment processes, independence, accountability, transparency, operating structures and competency...... "Autism NI also claims that the parent and carers representatives on the reference group were hand-picked by the chairperson to provide a positive response on behalf of the Department. Those are very serious accusations. In the best interests of public transparency, I commend the motion to the House."

I think perhaps MLA Craig's real reasons behind the motion are made clear later in his opening remarks when he says, "This issue is not about party politics. Some may want to use that ploy to deflect attention from the real issue. It is about how autism sufferers and the groups that represent them can be best served and represented. Furthermore, it is not about raising up old debates about whether there should be legislation. We are talking about accountability, which is getting to the core of what democracy and transparency are. How best can we serve and represent the people at the heart of the issue?"

Actually Mr Craig, the debate was exactly about those things you deny, and nothing else! Attention is drawn to your argument by your denial that those matters are the heart of the said debate. I am no expert in pseudosciences like psychology, but if you are about to reprimand your child and s/he beats you to it by blurting out, "I didn't touch the biscuits or the sweeties mummy", there is a pretty good chance that is exactly what Jimmy or Jane did.

One would have thought that a charity alleging the representation of so many families and individuals in Northern Ireland would welcome the RASDN and the opportunity for parents, all parents to be part of a process that in the past, had been closed to them. From what I have read about the Network, all of the members are considered equal and have an equal say in what is going to happen regarding autism in Northern Ireland.

Parents know what their children need and certainly the individuals who actually have autism know this, seeing as autism is a part of them, and also due to the fact they live in 'the system'.

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Following MLA Craig's opening remarks, Michelle ONeill (Sinn Fein) piped in with her own opinions. She says, "Members will have received a briefing paper from PAL, which is the parents’ autism lobby. From reading that document, it is clear that parents and carers do not have any faith in the newly established Regional Autistic Spectrum Disorder Network Group."

I personally would love to see that briefing 'paper'. If anyone knows how to obtain a copy or has a copy let me know!

Who are these parents/carers Ms O'Neill refers to? One or two, four or five? Who? How is it, that an obscure group that no one has even heard about, gets the opportunity to submit papers to Stormont, papers that can cause such a furore? If you or I started a wee group, would we get such attention?


Anyway, here starts a circular argument. PAL is synonymous with AutismNI/Autism Ulster. PAL's members are also members of AutismNI/Autism Ulster. So basically Ms O'Neill is stating that it's AutismNI/Autism Ulster that is doing the bellowing. There is no 'PAL' per se. As a parent I am delighted that there are parents involved in this strategy and that everyone seems to be working together.

PAL does not represent parents and carers, except those that are within AutismNI/AutismUlster. They certainly don't represent me and there are thousands of parents, carers and individuals in Northern Ireland who have never even heard of PAL and who are not members of AutismNI/AutismUlster. Ms O'Neill goes on..."Parents participating with the network are already reporting consultation fatigue and feel that they are not seeing the outcomes that they wish to see." Do these parents 'feel' this, 'believe' this, or 'know' this? Did those same parents ask AutismNI/Autism Ulster, the largest autism charity in Northern Ireland why nothing much has happened here in the past 20 years?

AutismNI/AutismUlster celebrated its 20 year anniversary recently, and from what I can see, the state of affairs regarding autism in Northern Ireland hasn't changed much. Who is actually to blame here? AutismNI/AutismUlster picked up the gauntlet of providing autism support and services, and they did so with lots of government money and support so who is really accountable for the mess? If AutismNI/AutismUlster wants the 'glory', they also have to have the 'guts' to admit their culpability in the mess.

Anyway, back to 'consultation fatigue.' What is that? I have NEVER been consulted regarding any services my children have received. For sure, I have been offered a few crumbs here and there, but consulted? Consultation with parents regarding services does not exist in Northern Ireland, not with parents anyway. The breadth of this comment is so earth shatteringly patronising.

Many of the parents I know are crying out for opportunities to be heard. Some of them write books, some of them write blogs (like me) just to be 'heard'. No one is listening. How many times have you been patronised by some so-called professional about your child, and about the 'complexity' (translate - no money) of his or her condition. How many times have you been offered tea and sympathy instead of answers by some of the autism 'charities'? If anyone came to me and actually asked for my opinion, I think I would faint with shock. If you are reading this Ms O'Neill, please explain to me the beliefs upon which you make such interesting conclusions, because you have absolutely no facts to base them on. Pure conjecture. Clearly, AutismNI/AutismUlster lobbyists have been successful where you are concerned. In my opinion, the free junket to Washington (2007) you received, paid for by AutismNI/Autism Ulster may have sweetened the pot for you as well, regarding your 'support' for the charity. (see www.niassembly.gov.uk/health/2007mandate/press/PNHSSPS12_07.htm.

Ms O'Neill's comments about consultation 'fatigue' were parroted from page 17 of this document prepared by AutismNI/Autism Ulster - (www.autismni.org/10708%20Autism%20NI%20Report.pdf ) No facts here I am afraid. Sinn Fein, not particularly known for 'independent thinking' probably works very well for AutismNI/AutismUlster. I despair of our MLA's that they voluntarily offer themselves up as political pawns. Have the likes of Michelle O'Neill et al even read a recent research paper? Do they consult with anyone outside of 'parochial' Northern Ireland? No wonder we are so insular and provincial. I digress.

Back to this document prepared by AutismNI/AutismUlster. It is a self congratulatory essay on how wonderful the charity is. It describes the RASDN and other autism related projects as 'knee jerk' and states that, "By 2010 parents of children with ASD have been ‘consulted out’. There is a feeling of research fatigue and many parents are critical at the slowness of Health and Social Care and Education to think, act and respond strategically and in unison to the needs of individuals with ASD. "

Well, AutismNI/AutismUlster, you have had 20 years to change that, but you didn't.
I do have to give it to AutismNI/Autism Ulster though. It does its lobbying work so well that politically opposed parties like Sinn Fein and the DUP actually agree on something. Jonathan Craig and Michelle O'Neill are on the same page here. Wow!

Maybe the charity could expand its lobbying work to be an all party arbitrator on other issues in Northern Ireland? Maybe AutismNI/Autism Ulster should address policing and sectarian issues. Of course, they are on the same 'page' because they all want the 'kudos' involved in bringing forth an autism act into Northern Ireland. For some reason these people think that a law outlining the rights of persons with autism would be a good thing. If you talk to people who have disabilities other than autism you will soon find out that such an act would be an affront and ultimately damaging to anyone with a disability. The politicians aren't listening to the parents whose children have rare disorders or whose children have conditions like muscular dystrophy or cerebal palsy. Where is their 'act'?

Ultimately, i believe an autism act would damage my child. Section 75 of the Disability Act is more than sufficient for my child. Again, very little thought has gone on here, it's pure politics and many politicians want a piece of the autism 'cake'. They need to be seen to be doing something, anything, just to get on the autism band wagon. The phrase coined by the republican movement can be inserted here in that people with autism, 'haven't gone away you know'. Quite the opposite in fact and many more voters in the future will have autism in their lives. Politicians want to appear 'caring' about the condition now, to ensure they get those votes. Pity they are so misdirected.

Another reason why the DUP and Sinn Fein are together on this issue, is down to only one thing, they want your votes.  I do believe that generally people are good and want to do good. In this instance, however, MLA's have been duped. These MLA's might presume that AutismNI/AutismUlster too, must be a 'good' charity. After all it is very vocal, has lots of staff, has political influence, and in the past had lots of money given to it by Trusts and by its membership. Does that mean there is proof that it does good work? Compared to what? How do we measure 'good'?

We, in Northern Ireland, are still the 'poor cousin' compared to the rest of the UK regarding autism. The very fact we are only getting a joined up strategy now, thanks to the RASDN, says it all. What has AutismNI/AutismUlster or any other charity working with autism been doing for 20 years?



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It seems that AutismNI/AutismUlster brokered a 'deal' between itself, the government and the National Autistic Society (NAS) to keep the NAS out of Northern Ireland. See here:
www.autismni.org/about/history.asp (retrieved on 30 July 2010) from the charity's 'our history page. It states that in the year 2000, "The National Autistic Society (U.K) set up a duplicate service to Autism NI in N.I breaking an earlier partnership agreement. An enquiry was launched by the NAS Board and Autism N.I’s complaint was upheld. The NAS withdrew the following year due to funding difficulties in England." (whatever that means) Apart from airing their dirty laundry in public on the website, the charity looks much more like a business and its inventory includes you and your kids!

It appears that having exclusive access to you and your child was part of the 'bargain'. The NAS, a charity with 40 years experience providing a wealth of information and advice to parents and individuals was stopped from setting up here in Northern Ireland. They did not provide a 'duplicate' service, they would have provided a service, full stop. Check out their website here: www.autism.org.uk/about-autism/autism-library.aspx This is the NAS' 'library of autism resources. It's immense. Does AutismNI/Autism Ulster claim that the NAS is a duplicate service?

Take a look at the rest of the NAS website, particularly their research. It would take days and days to get through all the helpful information, the studies, the projects, the schools, the support networks. Takes about half an hour to get through the website of AutismNI/Autism Ulster. What do they actually do?

They are vocal, but the real issues here in Northern Ireland regarding our children remain untouched by them. A prime example of useless and worthless information lies in AutismNI/AutismUlster's 'links' page. (see here: http://autismni.org/familysupport/links.asp. When you open up all five of the 'further reading' links, on their website, one of them is 'for sale' and another is a 'casino' site. Another of them provides about six pieces of information from an american parent. The other two, one of which is under construction are both selling something. With millions, maybe billions of links to choose from, is this the best a charity with 20 years experience, can do for you? Where are the links to the NAS or to the locally based 'Aspergers Network'? Why bother at all?

Are you raising funds for PAL and AutismNI/Autism Ulster? Your money, in my opinion, certainly is not being used for awareness raising or website design. My own blog has more links to good information than this 20 year old charity, a charity that has been funded for years with public money. I don't 'like' charities that purport to help but in fact hinder vulnerable children like my own, as well as their families. I don't see that AutismNI/AutismUlster is about empowering families or informing parents. I don't see it campaigning for mental health services, or intervention choices. What I see is a charity more interested in fundraising than anything else.

The motion at Stormont was reprehensible. It was an assault on my common sense to read the transcript. The reasoning behind the move to 'take it to Stormont' is clear in David Heatley's comments to the Belfast Telegraph on 28 June when he said, "We view the action plan as a huge missed opportunity and misuse of resources. It provides convincing evidence that only with autism legislation, which is currently being drafted by the Assembly, will come the requirement for joined-up planning across government departments and the recognition of autism as a disability within the terms of the disability discrimination act".see: www.newsletter.co.uk/news/Assembly-to-debate-39insufficient39-autism.6387183.jp .

PAL and AutismNI/Autism Ulster have one objective, to steam roll an Autism Act in Northern Ireland. The two organisations are one and the same, their goals are one and the same.

To the RASDN, I applaud you all. For once, in Northern Ireland, things might be moving. Who is it that is not happy with that? - the biggest autism charity. Something clearly not right with that picture. Northern Ireland desperately needs a strategy!

With the current financial crisis, Health Trusts are going to ground in terms of their spending. I don't think there are many disability charities in Northern Ireland who received the kind of funding that AutismNI/Autism Ulster did. The autism gravy train has stopped and all of the charities, including AutismNI/Autism Ulster will have to find other ways to make their money and keep their staff on wages they are accustomed to.

Unlike the tea and sympathy I have been offered so many times by those individuals/groups purporting to offer help to me and my children, I couldn't muster returning that favour to PAL/AutismNI/AutismUlster. So much needs to be done in Northern Ireland for our children and their future and it hasn't happened. Change is well overdue.

As for the DUP and Sinn Fein, I was under the impression that as political representatives they are elected to represent their constituents, not charities.


"Affluence means influence"
Jack London

and another.....

If it talks like a duck, walks like a duck, it's a duck.















6 comments:

Anonymous said...

I'm a member of Autism-NI. I don't disagree with most of what you say. I just wish they would help families instead of political point scoring. They seem to have lost their way and forgotten their reason for existing i.e. supporting the needs of people affected by autism. They appear to have become part of the establishment as opposed to challenging it. I hope they go back to their roots.

Name withheld

Anonymous said...

I was a member of Autism NI, however very quickly became dis armoured by the organisation. What they offered my family was literature(which I am quite capable of accessing myself thank you), coffee mornings and loads of fundraising suggestions for my family to support the charity. What my family needs is a hands on service not a lip service. Every time I get the telegraph there is a autismNI position being advertised; but what do all these staff actually do? I agree that AutismNI and the NI assembly are shouting from the autism hymne sheet, but don't want to actually offer any hands on solutions. My advice to parents would be to contact organisations such as the National Autistic Society who actually listen to what parents need for their children and at then at least try to provide it. That's what I call consulting with families. And why is it that AutismNI never tell you about other Northern Ireland autism organisations. No wonder they claim to be THE autism charity for NI? Come on AutismNI start working with these organisations and not against them.

Anonymous said...

i am a member of autism NI. my family have fundraised significantly for autism NI.
I am in RASDN and i work very sincerely to try to use the entitlement of being inside the flawed system we have, to try to improve it! I spend so much time in meetings, studying documents and commenting on them as do fellow members that I almost feel employed! BUT i wouldn't have applied to join if i did not think the system and support which we and our ASD children receive was inadequate!
I represent not my child's needs but those of any ASD household. I fight for change - from inside the system.
one point worth noting here is that Autism NI is also a member of RASDN.....

AutismNorthernIreland said...

Actually anonymous, though AutismNI may be a member of RASDN(the Regional ASD Network) it is also AutismNI (and by default, it's 'subsidiary PAL) which I believe, lobbied and complained so much about RASDN that a call to have RASDN investigated for 'incompetence' was brought to STormont in 2010. I refer to various of PAL's facebooks (still online)that refer to the disgruntlement they had/have with the RASDN. PAL is AutismNI. The chair of AutismNI is fully associated with PAL and what one does the other is doing, they are one and the same as far as I know. You would know better as you undoubtedly are a member of AutismNI, seeing as you raise some of their much needed funds. It appears from the DUP's manifesto that at least that party are fully committed to the RASDN so it seems the Stormont debacle about RASDN is over and minds have been changed.

From what I know about the RASDN though, they are in existence DESPITE AutismNI not because of it.

I think you probably know this as do hundreds of other parents I know. We all know! It wasn't very difficult to figure out. But you are right, if you want to change things, you work from the inside. I wish you well in your work with the RASDn and praise all parents who are involved and who are working so hard for all of our children in Northern Ireland who have autism. Who better to be creating and forging a strategy for our children than parents. Voluntary organisations do not speak for us. We speak for us and the RASDN has given parents what they never have had in Northern Ireland - namely a voice.

regards

Anonymous said...

it was precisely the irony of the position i wa alluding to!
i find it hard to understand while, as one of the 10 autism specific voluntary organisations which sit on RASDN (and are not coerced to be there!), they can consistently try to discredit the work the group do!
I am giving 100% to the RASDN process.
perhaps what we, in the process, could do is to look at ways of disseminating information more transparently about the work we are doing?

autismnorthernireland said...

If there is a medium to let the public know what the RASDn does, please let me know and I will let others know. It sounds like a lot of good and challenging work is going on, work that needs to be supported by everyone who cares about people with autism.

My own opinion is that the two main autism charities don't appear to be challenging much of anything and as you know there is plenty to be challenged.