Tuesday, 6 March 2012

"PASSIVE NI” New autism group in Northern Ireland seeking members

PASSIVE NI (Parents of 'Autistics' Sitting Still Inviting Vulgar Exploitation) convened it's first official meeting yesterday. Two parents, together with five children attended the meeting where tea and home-made biscuits were provided for a nominal charge.


Leavitt Twomey, a parent and social worker, hosted the inaugural meeting of the group in his Lisburn home. As chairman of the new group he hoped the membership would grow to raise enough money to pay for tea and biscuits for the entire year! “We already have 12 members including myself, my extended family and our treasurer. We hope to have many more soon. We count everyone as a member, so even if your child is 3 years old, he or she will be a member, we won't exclude anyone. As long as an individual meets our criteria as indicated on our membership form, they can join.   If every parent and child in Northern Ireland who are affected by autism joined our group, including their grandparents and friends we would have tens of thousands of members! To that end, we have already printed 5000 membership forms for PASSIVE NI. It only costs £20.00 to join (£25. 00 for children under the age of 16 and unemployed/senior citizens).


Leavitt brought the group's attention to the 'no paper' policy of the meetings and in the interest of the environment, no printed paper of any kind, including research papers, or printed information from other agencies or groups will permitted or circulated. He said the only exception would be PASSIVE NI's membership application forms, sponsor sheets for the group's upcoming bungee jump and of course, tissues.


“Mostly what parents want”, Leavitt said, “is for someone to listen to them. I am a social worker, so I know how the system works. Parents don't need to concern themselves with things they know nothing about. Further, our group is not about research or learning. We are here to cry on each others shoulders if we have to. Parents are happy to let others advocate for their children's future as long as they have someone to listen to them in the meantime. This is how it's always worked in Northern Ireland regarding autism and we have no desire to change that.”

PASSIVE NI knows that parents whose children have autism spend much of their time and energy caring for their children. “We know that time is precious to parents and that's why we have an array of fund-raising activities planned for parents that will take their minds off of autism. Parents will do anything to help their children. Fund-raising for PASSIVE NI is a great way for parents and their children to come together socially and to meet new people.


Fund-raising for PASSIVE NI will pay for tea and biscuits, Leavitt said, but he also hopes to employ two part-time professional fund-raisers very soon. Leavitt also hopes to quit his job as a social worker so he can work full time for PASSIVE. “We know that public awareness about autism is growing and we know how generous people in Northern Ireland can be when it comes to giving. I hope we will be able to raise enough money to pay for my full-time salary in the next six months! We are 'ambitious about autism!'


Albion Yurtale is a parent of two children, both of whom have autism. He is an accountant and is also the group's treasurer. He echoes Leavitt's optimism about the future of PASSIVE NI. “We are in the process of establishing new groups all over Northern Ireland. It will be my job to visit each of these groups and set up their accounting systems. Each of the groups will be required to carry out their own fund-raising. A stipend (75%) of all monies each group raises will be provided to PASSIVE NI's head office at Leavitt's home. The rest can be used by each group to carry out further fund-raising and to pay for tea, biscuits and tissues.

“Anyone who wishes to get involved with PASSIVE NI or who would like to start their own branch of PASSIVE NI is welcome to contact me at our premium telephone number :

0905 678910*
(* calls to the above number charged at £2.50 per minute. Mobile rates may vary. Please check with your provider)



PASSIVE NI
A shoulder to cry on


10 comments:

Minervabradley said...

Brilliant- hits the nail right on the head- if you didn't laugh you would cry (but obviously if we were all Passive NI members that would be a GOOD THING, much better than getting up & doing something positive).

Chris said...

Until yesterday, I was a member of the AutismNI parent forum. I always thought a parent forum was to share information. Someone asked about support groups in Ards and another member replied...unfortunately it was not an AutismNI support group. David Heatley soon advised us all we were not to 'advertise' other charities as it was in confict with their work. Many angry comments from other members until I asked what social groups for a 10 year old were available in Newtownabbey? His response was to delete the thread and replace with a picture of himself holding an award. I assumed he was annoyed with the other people for complaining...so I posted a new thread. I asked what events were coming up through AutismNI in the near future...excluding fundraisers. Guess what? He blocked me from the FB page! When the Chairman worries about 'advertising' for other charities, I'm afraid it means he is treating it like a business. It is a sad day when the business of the charity becomes more important than actually helping the people it was meant to provide for. In the last day...I know 40 people who have left or been ousted by AutismNI FB page...all have withdrawn their interest in forthcoming fundraisers for them in protest. We have enough hassle trying to gather useful information without worrying if it is AutismNI specific!

4 March 2012 16:35

(this comment replicated here by blog author from 'Show me the Money' blogpost 2011)

Anonymous said...

A representative from a certain charity has been stirring it up in a few branches in Northern Ireland and has caused major fall-out due to money.

This charity had its money seriously reduced in the last 12 months and every way has been taken by this charity to get as much money as it can from members like me even it means the members quit! Arse about face way of drumming up support I think. They wont see any more of my support or money.

Me and others contacted the charities commision in Belfast yesterday morning. There is something very wrong with all of this. If you are not happy with what charities do you should let them know. My kids need help. They dont need my pockets fleeced.

Jim

Anonymous said...

Ha Ha HA HA HA HA, cannot stop laughing. Very good. The subtle undertones are not so subtle and I know EXACTLY what you are talking about. Amidst my laughing, I am also crying as Minevra Bradley says above. The whole autism structure of help in Northern Ireland is hugely depressing and still, it goes on and on and on.

RonnieDonnie said...

Hello - I cant believe i found this page as its very timely indeed!

I have my membership renewal form in front of me right now from this charity.

A member from Autism NI has created havoc in a number of the groups and in my opinion this person and others in the charity might suffer from God complex and should seek some professional psychiatric help.

All the other parents who have been allegedly shunned by this group that is supposed to be helping I am not going to be a member of Autism NI any longer. I am disgusted. I also want back the over £2000 that I have raised for them in the past. I want to give that money to a charity that actually helps autistic children.


If you are a member of Autism N I maybe you should ask yourself why. I have just read some of the articles in this blog. It is damning that there is so much money in the bank account for Autism but us parents must give cash and time and for what?

I feel angry and sad and I hope that something is done about all of this. There are too many secrets and for too long.

Parents need to speak up about what is happening to them.

If anyone wants to contact me about what has happened at Autism NI or if they need help to escape from this cult just let me know at

autismcult@yahoo.co.uk

Ronnie said...

P.S. I forgot to say it might be just an little idea to begin collecting stories from those who feel agrieved about what is happening and send to this charity to let them know how they are hurting feelings and damaging their own reputation.

Our children are suffering because of this the most.

Mairead said...

Where are the mothers and fathers of autistic children and why do they put up with no services and help from volunteers?

Does anyone have an idea of the money spent and probably wasted on autism and whatever happened to it. Is no one accountable or is it really just all for jobs.

My nephew is waiting to be assessed for autism. I try very hard to support his parents because I have a child with a disability and I thought I could help out because I know about what it is like to raise a child with a disability.

Where to you go to get good help for autism in Northern Ireland? Isn't there anywhere someone can go that dosent ask for money or that isnt corrupt?????

Would someone return a message to this question so I can help my nephew that would be great.

He is almost seven years old and his mum is very worried about him.

Already my sister has not received any help at all. All she gets is excuses and no information.

Minervabradley said...

Mairead, I can't really give you a very satisfactory answer to your question - until your nephew is diagnosed, there is going to be no statutory help available. If he has been referred, he will now be seen within 13 weeks under the new 'Six Steps'- see the HSCB website. It really depends on where you live after that, some areas have a Trust intervention service & if he has a Statement of Special Educational Needs (if not, be quick- these will soon not be issued) he should have support in school.No local charity is likely to offer a service without charge, as they will have to find wages etc.

Ask around, read up on the Internet- look through back posts on this blog in particular, it is a great source of information. You will soon find out which groups offer more than useless tea and sympathy. You are right about the statutory stuff, we are all paying for pretty rubbish services through our taxes & it's a disgrace. I stopped even asking for help from our Trust, it still has the very lowest proportion of autism services despite taking the new RASDN money. So really, we should all keep asking & maybe they'll be forced to do something!!

Anonymous said...

I laughed so much when I read this but the reality of the situation is very, very sad.

I think one of the major points here is that passiveNI actually receives significant funding from government. Exactly how are our children being served??

Another crucial point to make is that there are actually parent led groups out there who are providing for our kids and their families. Many of these groups are made up of volunteers, source their own funding opportunities and carry out their own fundraising. These groups are providing what the "official autism charity" is being paid to provide. Not good :(

AutismNorthernIreland said...

Hi Anon, well good to see irony is not dead or wasted on those who read this blog.

Yes, funny isn't it, not funny ha ha, but funny weird.

And no one says a word. 'PassiveNI' has developed a reputation that it does not deserve and unfortunately for those government departments who funded PassiveNI, they didn't care, they just passed the buck.

They were happy that someone or thing would do something, anything.

Which leads us to today.

PassiveNI has its fingers in many pots, desperately trying to drum up funds, even if it means approaching independent, hardworking support groups and luring them with 'goodies' like free liability insurance, and free this or that.

PassiveNI doesn't know what the word 'free' means.

You know it, I know it, how come the rest of the parent/family community doesn't know it?

They can't be that tired to not speak up about how generations of children, now adults, have been let down. Can they?

Change is a coming.