I recently took a look at the Autism NI website. For the past year many of the most important pages of their website have been empty and 'under construction'. This charity claims to represent 1000 families (there are about 20,000 families presently living with autism in Northern Ireland) and also claims to be Northern Ireland's foremost autism charity. Websites are a charity's calling card and should represent what the charity does and what it offers.
Based on their website, I wouldn't fancy needing help from Autism NI.
Here's a look at what they offer (or rather don't offer) via their website. As a parent who often meets other parents, particularly parents with newly diagnsosed children, I despair when they ask me what Autism NI does, and if they should 'go' there. After viewing the AutismNI website I understand when they become deeply disappointed. At least they soon learn that they must rely on themselves to get what they need. That's where other parents come in (the experts). No wonder AutismNI's membership remains at only 1000 families.
Autism NI's links page (see here: http://www.autismni.org/familysupport/links.asp ) does not include the biggest Autism charity in the whole of the UK, namely the National Autistic Society (NAS)!
So to fill that gap, here is their link: http://www.autism.org.uk/
Nor does AutismNI include the locally based Asperger's Network. Again here is their link: http://www.aspergersnetwork.org.uk/ .
How could these two very important organisations be 'missed'? (ignored?) particularly when they both have branches throughout Northern Ireland?
It's my guess that the other 19,000 people living with autism in Northern Ireland have steered clear of AutismNI. Further, there is a new wave of parents out there who aren't going to put up with giving their hard earned money and time to an organisation that in my opinion, offers no help (or hope for that matter). Parents want help and they know how to get it, they don't have time to fill the coffers of a charity that does little for them.
Apart from lobbying for an autism bill, I personally don't see Autism NI doing much of anything.
Anyway see for yourself. This charity which claims to be the Northern Ireland's autism charity has very little to offer the hundreds of families whose children are diagnosed in Northern Ireland every year. I cannot see what Autism NI actually does for its 1000 families. Perhaps if the charity posted it's annual report on its website, we might find out more.
If your child has just been diagnosed and if you are in need of help, contact me and I will gladly give you my list of preferred websites and organisations, with people who provide real help and tangible services.
From Autism NI's website:..........
FAMILY SUPPORT TRAINING
http://www.autismni.org/training/familysupporttraining.asp (retrieved 13 February 2011)
This section is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Fax: 028 9040 3467
TRAINING CALENDAR
http://www.autismni.org/training/calendar.asp (retrieved 13 February 2011)
Our training calendar is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Note the above helpline - the helpline number is only open 10.5 hrs per week - make sure your family crisis only happens within these hours
BOOK A COURSE
http://www.autismni.org/training/bookacourse.asp (RETRIEVED 13 February 2011)
This section is currently under construction. For more information please contact:
Autism NI Training Department
Donard, Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Tel: 028 9040 1729
Helpline: 0845 055 9010 (Monday, Wednesday and Friday 9.30am-1pm)
Fax: 028 9040 3467
OUR STAFF AND BOARD
http://www.autismni.org/about/staff.asp (RETRIEVED 13 February 2011)
Please come back shortly to view our updated Staff and Board information.
BOOKSHOP
http://www.autismni.org/bookshop/index.asp (RETRIEVED 13 February 2011)
Our bookshop is currently down for maintenance. Please call back soon to view our new online shop.
If you want to give or raise money for AutismNI, funnily enough all of these links work fine.
You can take your pick from the following fully functional links: www.autismni.org/howcanyouhelp/index.asp
-Make a donation
-Become a Member
-Leave a Legacy
-Events
-Social and Community Fundraising
-Business Support
-Fundraising at School
-Merchandise
-Charitable Trusts
-Volunteer
"You can't build a reputation on what you are going to do." Henry Ford
Showing posts with label AutismNI. Show all posts
Showing posts with label AutismNI. Show all posts
Sunday, February 20, 2011
Friday, January 21, 2011
Autism Bill Northern Ireland - an update
There has been much activity in Northern Ireland regarding the proposed Autism Bill. Among other things, the Autism Bill proposes to amend the Disability Discrimination Act regarding autism and to change the description of what autism is or is not. (ALARM BELLS!)
The Bill passed its second reading in the legislature (Stormont) on 7 December 2010. ( You can read the proceedings of the 2nd reading of the bill here: http://www.niassembly.gov.uk/record/reports2010/101207.htm (watch it live here: http://news.bbc.co.uk/democracylive/hi/search?q=autism+17+december+2010&type=media ) (Scroll down to 7 December 2010 and 13 January 2011)
Relentless lobbying by one charity in particular, (Autism NI/Autism Ulster/PAL/) has resulted in every MLA now knowing a little bit more about autism than s/he did last year.
To the uninitiated and to general 'do-gooders' out there, enshrining the rights of persons with an ASD, under law, sounds like it would be a good thing, unless, of course, you are person with cerebal palsy, multiple sclerosis or Down Syndrome. You would be forgiven for asking, 'hey, where is my bill?' (Well, don't worry, if this bill passes into law, your advocacy groups will be following suit for their own legislation and rightly so!)
Persons with a diagnosis of ASD in Northern Ireland are already classified as having a 'disability'. Their rights are already protected under the Disability Discrimination Act (DDA).
Relentless lobbying by one charity in particular, (Autism NI/Autism Ulster/PAL/) has resulted in every MLA now knowing a little bit more about autism than s/he did last year.
To the uninitiated and to general 'do-gooders' out there, enshrining the rights of persons with an ASD, under law, sounds like it would be a good thing, unless, of course, you are person with cerebal palsy, multiple sclerosis or Down Syndrome. You would be forgiven for asking, 'hey, where is my bill?' (Well, don't worry, if this bill passes into law, your advocacy groups will be following suit for their own legislation and rightly so!)
Persons with a diagnosis of ASD in Northern Ireland are already classified as having a 'disability'. Their rights are already protected under the Disability Discrimination Act (DDA).
An Autism Act won't magically change the hearts and minds of those, who prior to such an Act happily bent the rules. An Autism Act won't legislate away the past 'wrongs' and the past 'mistakes', and it won't correct yesterday. Quite simply, an Autism Act won't clean up what has been the biggest problem in Northern Ireland, that of people in high places not working together and passing the buck where our kids are concerned.
We can legislate all we want, but unless the individuals who are paid to work with and for our children actually start working together and come out of their 'silos' nothing much will be achieved. This was made clear as a major problem regarding the Scottish Autism Bill. How is an Act going to enforce cooperation? It won't. The Scottish Bill for an Autism Act failed miserably last week. The Scottish situation compared to Northern Ireland is very similar. The Scottish Bill idea was instigated by basically one person, Hugh O'Donnell, MSP, backed by the National Autistic Society. It failed by votes of over 100 to 5. Last September an Autism Strategy was introduced for Scotland and it wasnt felt that legislation could add anything to that strategy. Actually the Scottish strategy was and remains woefully inadequate but it was felt legislation would make things even worse. See here for transcript of the Scottish debate which took place on 12 January 2011.
We can legislate all we want, but unless the individuals who are paid to work with and for our children actually start working together and come out of their 'silos' nothing much will be achieved. This was made clear as a major problem regarding the Scottish Autism Bill. How is an Act going to enforce cooperation? It won't. The Scottish Bill for an Autism Act failed miserably last week. The Scottish situation compared to Northern Ireland is very similar. The Scottish Bill idea was instigated by basically one person, Hugh O'Donnell, MSP, backed by the National Autistic Society. It failed by votes of over 100 to 5. Last September an Autism Strategy was introduced for Scotland and it wasnt felt that legislation could add anything to that strategy. Actually the Scottish strategy was and remains woefully inadequate but it was felt legislation would make things even worse. See here for transcript of the Scottish debate which took place on 12 January 2011.
Here are some of the dangers we face with autism legislation here in Northern Ireland. As a parent, I do not subscribe to 'getting all I can just for my child'. If we just take and not worry about others, we all lose out which is why I believe there is a grave danger our scarce and diminishing public resources would be concentrated by an autism act (how much is it going to cost? anyone?) and that this may seriously disadvantage others and pit parents against parents, families against families. There is an inherent danger that society will come to dislike us and our children!
An Autism Act would set our child as 'more deserving' in his or her disability. Our kids are already ostracised and isolated. We don't need to risk society disliking them and us because of a perception that we are 'getting it all' to the exclusion of others. If you are a parent of a child with autism and think your life is difficult and that no one understands your family or your child, try and think of those parents out there whose children have very rare diseases, or genetic problems, problems that barely warrant a support group because so few people have the difficulty.
Further, if your services aren't up to scratch, it really is about time that you, the PARENT started complaining, and actively campaigning for your child with your own voices. Don't ever expect that anyone, government or voluntary will pick up the tab or the responsibility for your child. The people heading up the call for autism legislation are in paid jobs, jobs that with funding cuts are at risk of being lost. Autism legislation will create jobs, but will it create services and positive change for your child?
With the financial cuts already here, it's going to be a tough road ahead and parental advocacy, parental strength, and parental responsibility is going to be the most important thing you can do for your and for my child.
Here is a link to the draft budget, now open for consultation: http://www.northernireland.gov.uk/website_-_draft_budget.pdf. Read and weep. There is no money.
Parents, when are you going to speak up and stop charities who are interested more in your money and their own survival, than they are in your children? How much did the lobbying by AutismNI cost? If you are a member of AutismNI, it was your membership fees and fundraising that paid for all the lobbying. Why didnt you ask the organisation to lobby about what your child really needs, like evidence based early intervention, specialist schools (not special schools), effective peripatetic services, skilled-up teachers and aides, more opportunities (real opportunities) to gain employment and to live independently for adults? These are the issues that are most important.
How many of your children with autism are going to be unemployed for most of their lives?
How many will develop mental health problems? How many of your children are going to be happy as adults? Our kids eventually grow up (unless your children are already adults!) Can a parent out there tell me what is available for my young children? I don't see much. I know that I am going to have to create that myself, work for it myself.
An amendment to the DDA is NOT going to change the attitude of teachers who think that because your child has autism he or she should go to a 'special school', that he or she is really just 'mentally retarded' and always will be.
Here is a link to the draft budget, now open for consultation: http://www.northernireland.gov.uk/website_-_draft_budget.pdf. Read and weep. There is no money.
Parents, when are you going to speak up and stop charities who are interested more in your money and their own survival, than they are in your children? How much did the lobbying by AutismNI cost? If you are a member of AutismNI, it was your membership fees and fundraising that paid for all the lobbying. Why didnt you ask the organisation to lobby about what your child really needs, like evidence based early intervention, specialist schools (not special schools), effective peripatetic services, skilled-up teachers and aides, more opportunities (real opportunities) to gain employment and to live independently for adults? These are the issues that are most important.
How many of your children with autism are going to be unemployed for most of their lives?
How many will develop mental health problems? How many of your children are going to be happy as adults? Our kids eventually grow up (unless your children are already adults!) Can a parent out there tell me what is available for my young children? I don't see much. I know that I am going to have to create that myself, work for it myself.
An amendment to the DDA is NOT going to change the attitude of teachers who think that because your child has autism he or she should go to a 'special school', that he or she is really just 'mentally retarded' and always will be.
I personally would not ask or demand anything for my child that I could not ask, or demand for another child that was in need.
The Autism Bill idea has so many flaws I can't begin to count them. MLA's have just accepted as gospel what was told to them by AutismNI. AutismNI has had the same CEO for 20 years and in my opinion, I think she is probably well versed in how to play politics in Northern Ireland. Where ministers and MLA's have fallen by the way side, AutismNI was always there, always constant, using it's experience and influence. Further, each MLA is after your vote. They know this bill is going to sway voters and they want as much support from you as possible. It's hard to say 'no' to a charity professing to represent the families of children who have autism.
Yet, I have had many people contact on this blog who vigorously do NOT want autism legislation and who immediately saw the dangers such legislation would bring. These people are parents who live with autism and who know what they are talking about, who are articulate. Seems the Assembly doesn't want to listen to them. Their voices don't count.
We have had over 20 years of intransigence and of pouring money into charities (Autism NI, etc) because the government didn't want to do anything, didnt know HOW to do anything. Now along comes this Autism Bill, and its going to make everything alright? I beg to differ.
Yet, I have had many people contact on this blog who vigorously do NOT want autism legislation and who immediately saw the dangers such legislation would bring. These people are parents who live with autism and who know what they are talking about, who are articulate. Seems the Assembly doesn't want to listen to them. Their voices don't count.
We have had over 20 years of intransigence and of pouring money into charities (Autism NI, etc) because the government didn't want to do anything, didnt know HOW to do anything. Now along comes this Autism Bill, and its going to make everything alright? I beg to differ.
The Autism Bill is a case of the emperor's new clothes. It's all smoke and mirrors, it says absolutely nothing, guarantees absolutely nothing, We must carefully examine what happened in Scotland last week. Not a lot of difference between there and here except that the Scottish MSP's had the sense to figure it out. Money was the biggest issue and that's going to be the issue here too, whether we like it or not.
AutismNI, (together with the help of SDLP's Dominic Bradley, et al). MLA's and the Health Committee in general have some serious deliberations to make. I hope now, they get some rest from the lobbying so they can think straight and make the right decision.
I personally don't think the bill will pass, I do believe our MLA's have a modicum of common sense. And if they don't they certainly have sense about money. (HOW MUCH, PLEASE, HOW MUCH WILL IT COST?)
But in the unlikely and unfortunate event that it does pass, I would just like you to know beforehand, that I and so many of my parent friends and colleagues support all human beings and we believe that needs of human beings, must all be met in an equitable fashion, no one more important than the other.
You will know who to blame if this ridiculous bill passes. If you don't I will remind you after the fact. Beware Stormont, beware MLA's for the backlash should this bill pass. It will be your heads rolling when you are being hounded for hundreds of thousands, if not millions to pay for it, and for the future 'bill's' and amendments to the DDA that will follow from other charities who work with people who have a multitude of different disabilities, all equally deserving.
Should the bill pass as law we can also expect that a lot of parents out there will see that the only way to get services for their child is to convince doctors and other professionals that their child has autism or is on the autistic spectrum. I can just hear the local conversation of the disgruntled mummy whose child needs help with her speech delay. Molly says to Mary, "Molly, have you heard of autism, maybe you can get wee Janey an autism diagnosis, after all she has been known to step on her tippy toes and she does like to watch videos. Maybe you can convince her doctor that she has autism! That way you can get all the services those other kids get. Yes Mary, that's a great idea, I am going to phone the child development clinic right now!"
This Bill is not a good thing.
Watch the Scottish Education Committee debating the need of an Autism Bill. http://news.bbc.co.uk/democracylive/hi/scotland/newsid_9191000/9191238.stm
"No law or ordinance is mightier than understanding. "Plato
"No law or ordinance is mightier than understanding. "Plato
Saturday, July 31, 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'.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
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'.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
Subscribe to:
Posts (Atom)