Where's Wally? - "Spot the Autistic"

Autism NI/PAPA , a Northern Ireland based autism charity have outdone themselves on this International Day of Persons with Disabilities by winning the booby prize for best stereotyping of autism as well as pissing off the entire autistic population of the world and their families.

Can you "spot" the autistic?
Autism NI/PAPA can help with that
(see below) 


He's the billy no mates, dressed in grey, with his gaze focused on the ground.
He doesn't need a phone because he has no friends and he's no one to ring anyway. He doesn't need a watch, because he's doesn't need to be anywhere soon.  He doesn't need sunglasses because he never goes outside (notice the pale complexion)

So, buy your autistic loved one, a colourful shirt, a mobile phone and sunglasses, get his hair styled and Voila!  No more autism!

link

         
         Non Autistics                                             Autistics

...are young vacuous males                             look like anyone else
...can afford to use                                                  
   Tom Cruise's dentist                                              
   and hairdresser

...are extras from "Glee"                                         
                                                                 
...live in California                                                  
   and like bright colours                                                                            
                                                                                   

The first ever "Spot the Autistic" Pageant will be held in Belfast on 

World Autism Day (2 April 2015)

1st prize:  Dinner with Tom Cruise & Dustin Hoffman followed by an
                 autism friendly private viewing of Rain Man

2nd prize: Spot the Autistic App for mobile devices

3rd prize:  3D X-Ray autism detection glasses


If you wish to contact AutismNI/PAPA charity yourself, to advise them that you have spotted an autistic, please alert them immediately at info@autismni.org. they have an emergency fashion makeover team anticipating your call.

An Open Letter to AUTISM NI

To: Autism NI

For the attention of Ms Arlene Cassidy, CEO

Dear Ms Cassidy

Re: Autism NI - A Cost Benefit Analysis ?

I refer to the above and note from my own calculations from your website (http://www.autismni.org/our-staff--board.html) that at least 15 paid staff are retained in your organisation.

From my calculation it appears that only four of those members would actually have any responsibility delivering services to parents and/or families. The majority of staff, as indicated by their job title appear to be fundraisers, administrators and event managers/lobbyists.

I would be grateful if you could explain the rationale of retaining such a large fundraising and administrative staff. I note from the website that Family Services provided by the charity together with other programs/services are extremely limited if non-existent.  The ratio of staff to service provision within AutismNI seems inordinately top heavy compared to other organisations who provide similar services in Northern Ireland. Very few charities in Northern Ireland would have AutismNI's administrative budget to pay these individuals' salaries, much less anything else.


Until the charities commission permits Freedom of Information requests to be pursued against charities, we the public will never really know what AutismNI receives in donations/government funding. In the interest of being transparent to your suppporters, however, I am sure you will agree that you should publish the charity's annual report on the website for the last fiscal year. Unlike the year 2009/2010, those accounts should be published in a way that is actually decipherable by the human eye.

My guesstimate is that together with your own salary which I presume is in the £50-60,000 per annum mark together with the combined salaries of your other staff members (including your parent liaison workers who probably make the going rate of minimum wage and or just above), the total amount in wages that the charity pays out per year is approximately £330,000 - £350,000. That estimate includes the potential payment of any wages to the Charity's President, David Heatley and the potential payment of services to one of your government lobbyists Eileen Bell. I don't know if the charity pays these people.

Can you explain what benefit is derived by families living with autism, considering the above estimated cost in salaries? Do you really need 15 plus staff to deliver almost no services? There are 10 charities that work directly with autism in Northern Ireland of which AutismNI is only one. There are a mulitude of other 3rd sector organisations that work directly and indirectly with persons who have autism, many of which do not have anywhere near the funding you have but who deliver a variety of regular and much needed services. What cost benefit is derived from the outlay of salary payment to so many staff?

I note last month (here: http://www.impartialreporter.com/news/roundup/articles/2011/07/28/394125-autism-charity-contract-terminated-by-trust-without-warning/) one of AutismNI's contracts in the Western Health Trust was terminated recently, 'out of the blue' as quoted by your staff member Paula Hanratty. The article states that "Autism NI had, over the years, secured and invested nearly £550,000 additional funding into the Trust area to meet the needs of families affected by ASD."  With this contract and others now terminated, it is difficult to know exactly what Autism NI does. Your website states that the charity has scores of support groups, many if not most of which operate themselves with parental administration. They do not require 15 of your staff to run them as I presume they run themselves and carry out their own fundraising. Some of these 'groups' consist only of a few parents around a kitchen table, and are in fact 'support groups' in name only.

I would be interested to have your clarification of the comment above relating to the £550,000 investment by AutismNI into the Western area Trust. I believe that AutismNI acted as a conduit in this area,  of government monies. The comment implies that AutismNI 'raised' its own monies. I think it would be more fair to say that the charity used publicly funded contract monies and re-invested them in the area. The money came from the government - Autisim NI simply spread it around. Would that be correct? The 'jobs' referred to, that were lost because of those cuts - could you clarify how much those 'jobs' paid? I note from the past that job descriptions emanating from AutismNI offered to pay parent liaison workers the minimum wage.

With the public purse being tightened, government contracts for services must now generally be carried out through a bidding process. AutismNI's contract was terminated because the Western Trust believed it could provide better services than AutismNI could do.  I also believe parents are demanding more from charities who purport to be 'helping' them.

Looking at AutismNI's website, I fear that parents are not getting the kind of help they need and certainly not help that is current or research based. I believe that despite the charities 15 staff members that AutismNI's helpline number is only open a few hours a week. Could you outline the number of hours of real face to face contact both you and other staff members have with children and families who live with autism? How many parents does the charity refer onwards to other organisations? Does the charity keep records of this? If so perhaps we the public could see these statistics. I should add that parents I know who have contacted AutismNI have been told to go to other charities and voluntaries or simply do not have their phone calls answered. Could you advise what those 15 staff members do during their day?

Two parent friends of mine have asked me to publicise their 'experience' with Autism NI. They both have young children with ASD and both of them had to seek help elsewhere than Autism NI because the charity could not help them and they were referred onwards.  I told them I would wait for your response to this letter.

An immediate publication of AutismNI's annual report outlining it's funding and expenditure for the past year is well overdue. Please publish this on your website.

I and I am sure others would like to know and understand what AutismNI, as a charity, spends its money on. I presume that the charity developed and spent money on its new website to indicate to parents and individuals with autism the services and advice it provides to them. After looking at the website it does not appear that much if anything is being provided by AutismNI particularly in light of the number of paid staff it retains. Cancelled contracts in the Western Trust together with other funding being pulled across the North begs the question what AutismNI as a charity actually delivers, particularly in context of it retaining so many staff members, all of whom must be paid.

There are strict guidelines that will soon be set in place by the NI Charities Commission. There is a distinct line between a charity and a political lobby group, an explanation that in part, can be seen here from the Charities Commission website: (http://www.charitycommissionni.org.uk/Charity_requirements_guidance/Your_charitys_activities/Campaigning/Guidance_on_campaigning_and_political_activities.aspx#l2)

"D3. Can a charity have a political purpose?
The short answer
A charity cannot have a political purpose. Nor can a charity undertake political activity that is not relevant to, and does not have a reasonable likelihood of, supporting the charity's charitable purposes.


Whilst a charity cannot have political activity as a purpose, the range of charitable purposes means that, inevitably, there are some purposes (such as the promotion of human rights) which are more likely than others to lead trustees to want to engage in campaigning and political activity. (See section D4 for information on including campaigning and political activity in a governing document.)


In more detail
A charity cannot have political activity as any of its charitable purposes. This is because a charitable purpose should fall within the description of purposes set out in the Charities Act (Northern Ireland) 2008. However, political activity can be carried out by a charity to support the delivery of its charitable purposes. In order to be a charity, an organisation must have purposes which are exclusively charitable and for the public benefit. An organisation with a political purpose, such as promoting a change in the law, legally cannot be a charity. This applies even if the organisation has other purposes which are charitable. This would involve looking at 'political' questions, which neither we nor the courts are in a position to answer. Constitutionally, it is not possible for the Charity Commission for Northern Ireland or the Courts to make decisions about whether a change in the law or Government policy would be for the public benefit. However, organisations which are established to ensure that the law is observed, for example respecting certain fundamental human rights, will not automatically fall within this definition. This is a complex area and in future years we will explore with charities established for the advancement of human rights, the boundaries of this particular charitable purpose in relation to campaigning and political activity."


The fact that AutismNI retains the services of the President Mr David Heatley and Ms Eileen Bell as a political lobbyist is questionable. Mr Heatley and yourself are well known to MLA's and to Stormont as is Ms Bell. Mr Heatley as far as I know does not deliver programs for the benefit of your members or for the wider 'autism' community. As President of AutismNI, is Mr Heatley a paid member of staff. Do you pay Ms Bell a wage for her lobbying services to the charity? How many other members of staff of AutismNI are paid a wage and in what context of providing services to the community? What is your definition of a charity? What provision to families living with autism does the charity currently provide and how much of the charity's budget is fixed for that purpose compared to its administrative costs?

These are questions that should have been asked well before now, and that should be now be answered.

I look forward to your timely response.

AUTISM NORTHERN IRELAND



for further information see : www.fakecharities.org  and in particular this page: http://fakecharities.org/database/shelved-reports/  which lists AutismNI as a charity whose reports are not published or whose accounts are not available and/or do not detail its public funding.

Autism NI/PAPA - a charity exposed

Autism NI/PAPA  is a Northern Ireland based charity/non-profit organisation which believes it is the "voice" of autism in the region.

What is it, what does it do? I have asked myself this for the past decade since my child was diagnosed with autism. Lets face it, they aren't exactly the most well known autism charity in the world, in fact many parents in Northern Ireland have never heard of them. Yet, one would be amiss not mentioning them.

Autism NI have a lot of staff and they seem to have lots of money. At first glance, it would appear they might be doing something useful. No charity could be in existence for 20 years as well as maintain the money required to survive right?   One would assume that no charity could have the same CEO, for so long (together with their other long standing members) and not be top of their field in knowledge about the condition.

Apparently Autism NI has 18 support groups across Northern Ireland. I am sure that two of these groups (because I checked) and possibly more are not real groups, and that in fact they are defunct. I don't know what constitutes a group in the eyes of Autism NI, maybe a phone line in someone's home is a considered a "branch".  Its hard to know because Autism NI uses a central phone number connecting to their Knockbracken Healthcare Park office, making it difficult to actually speak to anyone outside of headquarters. One would think they don't want parents to connect with each other except through Autism NI staff.

At the helm of Autism NI is their committee, the same committee who made the decision to accept an award (after submitting a well thought out application) of 25,000 pounds from pharmaceutical company Glaxo Smithkline last year. What interest does Glaxo have in our children who have autism?


You can see from this link (http://www.corpwatch.org/article.php?id=15208) what Glaxo Smithkline have been accused of lately and its not good.

Autism NI regularly post employment opportunities, many funded by health trusts. Some of these positions seem to be four or even five jobs rolled into one. This, coupled with the fact that the remuneration on offer has been notoriously low (especially for positions inviting parents who want to work part-time)  has never enticed me to apply. What put me off even more was the blurb at the end of one of these recent job descriptions entitled pressures inherent in job. Under this heading one of the inherent pressures was listed as "dealing with the raised expectations of families".

Considering I have raised expectations for my cat, much less my child, I am confused by this. I did not know that the "raised" expectations I have for my child was a problem that had to be "dealt" with.

In the same job description (autism resource officer NHSCT) is the following paragraph: "co-operate with all AutismNI staff in maintaining good relationships with outside agencies and the general public in order to uphold the Charity's image and win increased support for its work...ensure that your conduct within and outside AutismNI Central Office does not conflict with professional expectations of AutismNI." I smell paranoia.

One of my biggest difficulties with this charity is they seem to be considered the "go-to" group where autism is concerned in Northern Ireland. Got a problem? Go to Autism NI". Most of the Health Trusts provide them with substantial monies that could and should be given to other organisations that at least have a modicum of knowledge about the breadth of early intervention as well as current international research.

Autism NI is well funded and collects money for autism across Northern Ireland. It is supported by many MLA's, most of whom haven't a clue about autism but who seek votes by appearing to be supportive.  While parents are shouting from the rooftops about lack of services or inadequate provision, Autism NI does not.

For parents of children who have ASD, the internet can be a lifeline, affording easy and quick access to a plethora of information from around the world.  Autism NI's website doesn't post much if anything about informing and empowering parents regarding the condition. don't see anything that would empower a parent. 

I saw a lot about an Autism Act though. There is a facility on their site to sign your name as part of an e-petition yet it has less than 600 signatures. Less time on an Autism Act and more time on real bread and butter issues like improving services and support service would be much more helpful. But yet, why would AutismNI do that? Why bite the hand that feeds. If you have to schmooze politicians to support you, you are unlikely to accuse them of being ineffectual. All that lovely money might go astray if those in the Department of Health suddenly decide they don't like you anymore.  That's politics in Northern Ireland, that's politics everywhere. It's absolutely nothing to do with getting help for children. Pays the salaries though.

Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened yet who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't we have the infrastructure yet for rights. More importantly how much has the lobbying cost and where did the money come from?

The hard work that really needs to be done in Northern Ireland involves a tough examination and overhaul of existing services. We need experienced and trained individuals who are going to do the work, and a strategy to tackle the societal ignorance about autism.

I had hoped that following Autism NI's trip to Washington in 2007 together with its entourage of 12 that something useful would have come of the trip, something that could be seen at street level, by the average J. Bloggs. I haven't heard much about the outcome of this trip in 2 years, though there are some pretty pictures on the website of people from AutismNI and local politicians posing in Washington.

Only one of the many MLA's who attended (John McCallister, South Down) bothered to register  his interest regarding this trip with the Northern Ireland Assembly. (a legislative requirement)

No one knows if the various politicicians paid their own fare to go to Washington, but if AutismNI did pay for their trips, we should have been told, particularly if public fundraising was used to pay for it. See here: (http://www.niassembly.gov.uk/members/expenses/register2.htm)

Why wasn't the National Autistic Society invited to attend Washington? Was this trip just a schmooze fest for AutismNI and carefully selected politicians?

Illuminating comments from AutismNI CEO Arlene Cassidy on the NAS/AutismNI relationship were made here ( http://www.niassembly.gov.uk/health/2007mandate/minutes/2008/081113.htm ).

Carmel Hanna SDLP, asked Arlene Cassidy why there was no support or relationship between AutismNI and the NAS. Arlene said she didn't know. After she asked the question, Ms Hanna  apologised and said she did not "mean to be contentious". Why would a simple question, an important question like that be contentious? Perhaps she knew the answer to that question already but was afraid of stepping on AutismNI's toes. I don't understand why an MLA would preface her question with an apology. But mostly, no answer is forthcoming as to why the biggest autism charity in the UK and Northern Ireland's "own" charity dont work together.

If anyone has an answer to this, maybe they could respond. I think the answer lies in AutismNI's website pages about their 'history', where they air their dirty washing about themselves and the NAS. The web page states that a deal was brokered to keep the NAS out of Northern Ireland in the year 2000. Huh? Well, again, I can understand this. Lots of lovely money up for grabs and what is the point in sharing when you can have it all to yourself. Pity the NAS was so wimpy though.

Getting back to the AutismNI 2007 Washington trip, this would have cost at the very least 15,000 GBP (providing they flew in the cargo hold) and that kind of money would have gone a long way towards better wages for AutismNI's  support staff. In fact, for anyone who has the time, perhaps you could contact the Charities Commission and ask them how to go about getting a copy of AutismNI's budget for 2007, or for 2008. AutismNI has recently asked for almost one million pounds to fund autism staff and programs in Northern Ireland, much of that money slated for wages. Yet their wages, particularly for some support staff is barely minimum wage.What do they do with all this money?

Here is the link: (http://www.pfgbudgetni.gov.uk/autism_ni.pdf)
I think we have a right to see this information. Let me know if you find anything out, particularly if you find out who paid for the USA trip. Charities should be transparent and those as big as Autism NI should be transparent, informing their members where the money comes from and goes.

It's very confusing this AutismNI. First it was called Parents and Professionals Autism (PAPA) then AutismNI, but also known as Autism Ulster and finally, coupled with their linked company Autism Consultancy and Training the charity might be called PAPAAUTISMNIAUTISMULSTERACT. I can't see that Autism Ulster is going to go down too well in certain parts of Northern Ireland though.

A final word about AutismNI. In their current e-bulletin (link here: www.autismni.org/news/ebulletin%20janfeb09pdf.pdf) on page 7 is an explanation of an upcoming study they intend to carry out raising the issues of vicarious trauma (from the Troubles) and autism. Sorry, but this is the lamest attempt I think I have ever seen to link autism to something else. According to "experts" autism may be caused by:

faulty genes
men who dont like large women
watching too much television
lack of vitamin D
too much rain
single sperm donor

and now wait for it - the Troubles

Have you made your application to the Victim's Commission? How many times have you heard victim and autism in the same sentence. A google search of autism victims throws up 1,190,000 hits so maybe AutismNI is ahead of its time after all? It's bad enough that republican break away groups are fomenting violence in Northern Ireland again. Now it seems AutismNI wants to get in on the act and wrack up old wounds in the name of autism! Time for parents to wake up and stop letting groups and individuals make money and a name for themselves off the back of our children's diagnosis.

If you are unhappy about anything to do with autism in Northern Ireland, I am afraid that if you want positive change, it is you who will have to do the hard work. Relying on others has to date, achieved very little. Classroom assistants and Statements of SEN  have been and will continue to be cut (see Belfast Telegraph 13 March 2009) Choice on how to have your child educated is almost non-existent, with many children relegated to and cloistered in "special" (not so special) schools.

If your child has autism and you rely on AutismNI or any other group to do anything for him or her, s/he will still have autism 20 years from now. Yes, they will have been given a lot of party balloons and autism bracelets, you will have been offered endless cups of sympathy tea and cream buns, but your child, now an adult will face the same uncertain future as those born 20 years earlier.