Wednesday, 12 October 2011

CEAT - Leaving Northern Ireland?

I have heard on the grapevine and also from commenters to this blog that the Northern Ireland based ABA company CEAT (Centre for Early Autism Treatment) located in Belfast will be considering departing soon from Northern Ireland (or rather the proprietors of CEAT are leaving, i.e.  Mary Hopton Smith and Kimberly Wroblewski.)

Apparently, they are both moving to Wisconsin USA. It has been intimated to me that the company will remain in existence and managed by others who will be staying here. There is room in Northern Ireland for many ABA providers, and I hope that we will see professional consultants find their way to the province soon.

For all those parents, however, who complained to this blog, so vociferously in the past about CEAT, their prices, their 'attitude', their lack of efficacy and the rest - can I make a suggestion to you all? Don't moan to me - let your feet do the talking - the next time any sort of  organisation that purports to be helping your child comes around, don't believe what they say but rather ask for a money back guarantee and do your own research about who they are, what they are and whether or not you even need them. Using an ABA provider usually involves a financial transaction and buying ABA should at least involve the same precautions that you would take when buying a pair of shoes - you have to ask yourself can you really afford them, can you get them cheaper elsewhere,do they fit, will they last, can you return them if they fall apart and is there an extended guarantee?

In general where ABA is concerned don't be 'blinded' by what someone else attributes to 'science'  or taken in by a sweet talking autism 'know it all'. Case in point are the classroom aides, teachers, educational psychologists, speech therapists and OT's who think they know more than you do and can help your child even better than you can. ABA is only as good as your provider (or you) make it.  I don't know what it is about autism but as parents we sometimes continue to believe anyone who promises us 'hope' for our child. Why is it that our 'hope' for our kids often has to emanate from others first? Why isn't our hope and aspiration for our kids built-in, and rock solid? Why do we look to others to give us hope and end up paying through the nose for the pleasure?

 I hope that very soon ABA will be a household word in the autism community and I do hope that it will be readily available and fully accepted as a practical, effective, reasonably priced and common treatment for autism, one that will be provided to every family for free.

In the meantime, however, your child's future lies with you, it's you that has to do the day to day work on the ground, on your knees with your child, not a highly paid autism consultant. Any ABA consultant worth their salt will ensure that you are trained and experienced in carrying out the ABA program. Your parental role can never be substituted by a paid ABA consultant or 'therapist'. Your child's learning mostly takes place in the home with you and the rest of your family. Any parent can be trained how to develop, and use an ABA program in the home and this is the most important thing that any ABA consultant can and should do for you. If they don't, there are serious questions to ask.

I have said before that ABA is not rocket science. It also should not cost a 2nd mortgage. Before you sign a contract with an ABA provider, and before you sign a cheque, demand to know that the ABA provider has a successful track record, that they are going to train you and your family in using the program, that they will take the time to know your child's needs, personality and also the needs of your family.  When it comes to ABA  there are fully qualified ABA therapists and consultant level providers all over Northern Ireland and in the south of Ireland.

To parents - contact the  ABA charity PEAT which is located in Northern Ireland. PEAT consists of parents who are using ABA and have learned how to use it with their children. Ask them for help.  Don't put up with shoddy services or useless 'support' groups that promise visual schedules will 'help' or cure your child's autism - stand up for yourselves and demand what you want. If you don't know what you want, figure it out. If you can't get it, create it yourself. If you don't, you may be taken advantage of, not just regarding ABA but anything classed as a 'treatment' for autism.

If you want to pay £400-500 per day for an ABA consultation that's your business but know that you don't have to. ABA is as much about good parenting as it is about the science of behaviour and you can learn it.  ABA is there for anyone to learn. In fact, if you want to learn it, there are many parents out there who can teach you - have you asked around to find out who those parents might be? Contact PEAT (http://www.peatni.org/). Personally, I like this organisation, it's run by and for parents and they don't cost the earth.

No one should have to pay £20,000 - 30,000 or even 40,000 per year for an ABA program. We all pay into a universal health service so that we can dip into it when we most need it. Currently in the UK that is our right. ABA, if it has efficacy, should be on the menu so to speak, for your child, my child and all children with autism for free.

To all the parents out there paying exorbitant costs to run ABA programs, will you want to run similarly expensive programs for your future children who might have autism? Do you want your nieces and nephews, friends and colleagues to have to pay the kind of price you are paying now?

If we start thinking in Northern Ireland about ALL the children who have autism and what is best for them, and not just our own children with their own personal and privately paid for ABA programs, perhaps we would be a lot better off. If you who have private ABA programs think ABA is so wonderful why do you keep it to yourselves? Would you be willing to share your time to lobby the government so that a child whose parents couldn't possibly afford it, gets it? Or is it just about you and your child? As long as ABA remains in the private sector (because you continue to privately pay for it) how will it ever enter the public arena? Does your private provider do any lobbying? Have they put together a fund to help less fortunate families? Do they avail of the substantial subsidies that are available UK wide to help families?

On that note the Caudwell Children's Trust in England is now funding ABA in Northern Ireland and I suggest that parents contact them to enquire how they can avail of the funding.

 Isn't this a case where thinking about someone else's child and demanding that someone elses' child gets effective autism treatment (just like you are paying for now) might actually  benefit your child and others, in the long run? What is it like for other families who cannot afford ABA to listen to an 'ABA family' wax lyrical about their Mercedes whilst that family will never even obtain a driver's licence? This is not an attack on those who can afford to pay for private ABA. Parents do what they can to help their children. Parents, however, who 2nd mortgage their homes, borrow from family members, climb Kiliminjaro, etc to raise funds should not have to. If ABA is so wonderful, it should be funded by the state.

Where ABA is concerned, money talks. For those who say different, you are fooling yourselves. What do we need to do in Northern Ireland to ensure that all families who want ABA get it and that they receive it for free?

50 comments:

minervabradley said...

Can't say I'm sorry. Paying enormous sums of money to access effective treatment should NOT be necessary - & what skills have parents acquired for the time when the money runs out? For you are going to need them- the Trusts & most schools have no evidence at all that the 'interventions' they endorse/buy in/deliver actually make any difference(basically a bit of this & a bit of that, delivered by someone who sat in on a one-day course in TEACCH & who deep down believes your child is unable to learn). For people who say using ABA needs a mortgage-read the article by Mickey Keenan featured on this blog & look up a charity like PEAT which gives you a grounding in the science of behaviour!

Karola said...

PEAT has developed an online tutorial (at very affordable prices because it was financed by grants). PEAT worked together with 4 BCBA-D and 2 BCBAs in making SIMPLE STEPS. Both NI Universities were involved. FInd it here
www.simplestepsautism.com

For parents who are looking for postgraduate training, have a look at QUB for MSc in ASD (with 2 modules in behaviour analysis) and UU for a full MSc in Behaviour analysis.

Anonymous said...

Will be very sorry to lose Kimmy Wrobliski

Anonymous said...

RE post from Anonymous dated 12.10.11: It is a certain director/co-founder of ceat who does not take on board the opinions, sensitivities or needs of vulnerable families - because of this the organisation's reputation has disintegrated. A complaints department? The ethos seems to be that the families are always wrong! They do not appear to accept responsibility for mistakes or wrong doings. Sorry is a word you will never directly hear. While many children may progress significantly with their therapy, it is an unforeseen journey of immense stress and financial ruin for many families. There are many battles we fight on behalf of our children, but when families sign up to ceat they are led to believe at the beginning that this will never be one of them. Ceat claims to be a non-profit making organisation - so where does all the money go that leaves many families financially destroyed?

Anonymous said...

My child was diagnosed three years ago and I didn't know where to turn. Another parent pointed me in the direction of the PEAT charity as I could not afford the fees that CEAT were charging. I attended a PEAT training event to learn about ABA and now get regular home visits from their behaviour analyst who has taught me how to use ABA with my son. Peat told me that they would train me to deal with my son as I am there 24/7. My son is making great gains and this has given me a more positive outlook for his future. Peat is a charity which charges minimal costs for a very professional service.

Anonymous said...

It will be a sad day when CEAT leaves Northern Ireland especially with the departure of Kim Wroblewski who has been a constant support for families and children. She will be missed. Will the current staff at ceat remain?

Hardworkingmum said...

Firstly, I wish Mary and Kimmy all the best with their move to Wiscansin and will never forget the day they came into my life.

It is stated by this blogger that CEAT "purports to be helping your child". This is straight-forward libel and I would happily provide my story to anyone to defend CEAT. The hope and aspiration I have for my child is built-in and rock solid which is why I needed CEAT's help in the first place. My ABA therapists costs are comparable to that of child-care. My family is not wealthy, we are hard-working people who understand that early intervention in our child's development by both highly tuned-in professionals as well as ourselves as parents will give us the best chance. 7 months ago my child was non verbal and had to be removed from nursery due to agressive behaviour and was permanently "sad". On our first visit to CEAT he took to Mary immediately and responded to her discrete prompts to make eye contact. I was never offered false hope - I only wanted my child to be happy. I already have a smiling child who I have just taken on holiday, who is communicating in 5 word sentences, can call for mummy and daddy and can ask for favourite foods + drinks.

To all the doubters of CEAT out there, I will happily talk to anyone who is unsure of their next move. I looked at all my options including PEAT at the time and while I chose not to go down this route, I do not think that personal vandettas and libelous comments are appropriate. From Day 1, Mary has ensured that me, my family and even our friends are trained in the ABA programme and as my child's development rockets, we are involved in the changes and challenges this brings, as a team. No parent should attempt this - it requires expert knowledge and experience. Believe me, I have seen it work time and time again. It is vital to get the mix right.

There is no risk of my child's programme falling apart and think this is an odd comment ? I employ a dedicated and highly trained team of therapists and consultants myself and will obviously have contact with Mary, Kimmy or the new director whenever I want.

I hope that ABA will become a household word and will be freely available as soon as possible, but at the minute, it is not and the clock is ticking for my family. Nowadays, many people have to find the money for IVF, private treatment across the world etc. Yes, its wrong, but as we all know, life isn't always fair.

Anonymous said...

The hear say is they are leaving after christmas with ex senior staff member coming back, all other staff is rumoured to be staying! Again hear say as they are not forthcoming with details even to families!

Anonymous said...

Very sad to see Kim go also! But not the other!

SUE said...

Everyone is entitled to thier opinion,, however dont knock a service that has helped and supported families! We lived in the back of beyond,, no services avaliable, no-one to help or advise us living with Autism. Well and good if you live in or around Belfast to get access to things but live 90 odd miles away and then see who is ther to support you, CEAT were the only people willing to come to us??? If you do not agree with CEAT and how Mary and Kimmy work then thats your personal choice but I may say quite clearly they helped me and my son enormously,, and no, money was not the root of it, they cared and they damn well understood. May I ask how do you know what qualifacations they have?? No matter what people say if the expertise is there and it works then families will go to any length to get the service,,, tell me what was avaliable years ago in Northern Ireland???? So why are you advertising PEAT who may I add charge as well??? Is there any difference? Do you expect people not to move on and improve their quality of thiers lives? Are Mary and Kimmy expected to stay in NI till the retire,,, get a life! As for posting a blog, would it not be better to meet and dicuss your issues instead of trying to blacken a reputation??? I for one will back CEAT to the hilt they have always been there for us and always will be they look upon us as a family and are still supporting us and may i also add not one penny has changed hands!!! See the difference is you choose what comments to post and if you dont like what you see as in support for CEAT, Mary and Kimmy these ones will be left unseen,, so it will be interesting to see if you are fair?

Mark McCartan said...

Cant agree with the origanal post at all. CEAT helped our son no end, I really dont know where he would be if he had not done the ABA programme. Really one sided and not well researchrd at all.

Sue said...

So Autism Northern Irlenad who are you?? Atleast Mary and Kimmy are brave enough to put their names to what they do which is more than you are doing??? A tad bitter are you??? Maybe promoting PEAT for a reason???? Method in the madnes and all that????

minervabradley said...

Hardworkingmum,
glad things are working out for your family, news of every child who makes strides is to be welcomed- but before you go accusing the blogger of libel, maybe you should read what he/she said more carefully. What you cite as the blogger's words- 'that CEAT "purports to be helping your child"' is incorrect, and implies he/she has singled out CEAT with a negative meaning. The most common use of purport is in the sense of making a claim - the actual phrase was referring to 'any sort of organisation that purports to be helping your child' and goes on to say do your own research about who they are etc. Good advice, it applies to CEAT,PEAT,Son Rise, swimming with dolphins or pony trekking in Mongolia.

Anonymous said...

I feel like I already know "Hardworking Mum" - the tone and language of the emails are extremely familiar!

Anonymous said...

To Sue: What do you mean "not a penny changes hands?" When ourselves and every other CEAT family we know pay the organisation hundreds of pounds monthly?

Anonymous said...

ORIGINALLY POSTED 10/07/11

Very interesting blog indeed. My family have recently had a very short relationship with CEAT. We are a family with a very low income and live in a terraced housing executive house on an estate. It seems that unless you are willing to pay ridiculous amounts of money and a lot of which does not directly involve treatment/therapy, they are not happy to help your child after all. An hourly rate of £38.50 per hour for consultants on a 3 hourly weekly visit turns into £66 per hour for a consultants visit 3 hourly on a fortnightly basis. This means that over a fortnight on the weekly charge there would be 6 hours of consultant visits for £231 and on the fortnightly charge its reduced to 3 hours for £198. Not to mention £82.50 per hour for 3 hour programme presentation visit (£247.50) £65 per hour for a 3 hour director visit once a month if on the weekly model and once every 4 months charged at £75 per hour on the fortnightly model. Clients who choose the monthly model then have to pay £70 per hour for a 3 hour consultant visit (£210). Mileage to and from your home is charged at 38p per mile and ALL visits are billed for 3 hours in length and in contradiction to a statement in this blog regarding costs including therapists, this is not so. To quote Ms Hopton-smiths co director," As for the therapist's hours, those are totally up to you. We don't hire or employ them, nor do we bill for them." CEAT seem to act nearly as an agent for therapists (who differ from consultants) and families can expect to pay somewhere in the region of £8 - £15 per hour for therapists. The therapist provides hands on teaching for your child. I really wish that there were some kind of regulatory body for this because as a parent of a child with severe autism I am devastated that CEAT were extremely reluctant to tailor a programme to the needs of my family as it went outside their 'fair and balanced models and costs'. Parents who decide to challenge these costs with CEAT can expect to be labelled as abusive and slanderous and an insult to other families, their children and their choices. To quote Ms Hopton-smith in relation to our package ."We work with individual families, but we do have partnerships with some charities who work with families who are not able to afford private consultants, and we have provided charities with subsidized rates as we want to be able to do everything we can to work with all families and all children. It is the unfortunate system that we are in, but we have to remain equitable across families. We are not a money making scheme, neither do we take advantage of anyone, we provide quality services and we need to ensure that our Consultants have a salary, surely you can appreciate that." " The Models that CEAT offer are structured in such a way to ensure that we are covered for the time your Consultant spends working in your home, travelling to your home, preparing documents in between visits, maintaining contact between visits and liaising with Directors to ensure intervention integrity. At the start of a programme/support plan, your Consultant will have or will be spending far more time preparing for your intervention in the form of research, document presentation and discussion with directors to ensure the integrity of the intervention, hence, when a programme is established an Initial Workshop Rate is billed in respect of all of the above work." Ms Hopton-smith went on to say, " To continue to receive our services it will be necessary for you to have a 3 hour initial presentation rate". The government need to sit up and take notice. In the long run any expense faced by providing ABA to our children be it in schools or home based would pay off as this would provide them with necessary tools and skills to live a potentially 'normal life' thus reducing costs of care etc in adulthood.

onehappyfamily said...

CEAT has helped not only my son, but my entire family. Both Kimmy and Mary have been there with us, teaching us to navigate our way through the tough times and bumpy rides, making sure we knew what to do when things became tough again. Mary, Kimmy and our consultant are always available to us no matter when we need them and many times this has been round the clock support when we need them. They have always been only an email, a phone call or a drive away.

Mary, Kimmy and all the fantastic CEAT team, continue what you're doing. We will be sad to see you both leave NI but we know that you are always only an email or phone call away.

For every one bad experience there are many more positive ones... We are one of the many.

AutismNorthernIreland said...

Hello everyone - i post all comments, and in fact there are an additional 8 comments I have received since this afternoon that are extremely negative regarding CEAT - I cannot post them.

To the people who did post those comments, I strongly suggest that you contact CEAT and advise them of your concerns. To the poster named 'Charlie's angel', I suggest you see a solicitor, and that you do so as quickly as possible.

Brendy said...

As parents we use ABA applied behaviour analysis every day with our other children and don't even know it. To us its just another word for parenting our children. My wife and I decided when our middle child developed autism in 2007 that we would learn about aba. We soon realised that so much of it is due to smoke and mirrors and jargon and simple concepts. Those concepts can be explained really easily or with undue complexity blinding the parent with science. Thats the reason we decided to just carry on with what we were doing with xxx. He is doing great now and we never relinquished our parenthood or our bank account but just worked very hard to become attentive and better parents. ABA is not the be all it makes out to be and nobody should have to pay. Its a travesty and I feel very pained for those parents who have to buy an education program that should be free because aba is all about setting the stage so your child can learn. I would really like to know from someone about the real cost of an aba program with ceat or other organisations.

Sue said...

To Anonymous,,, Please tell me where in my post i said NO money changed hands??????? Think you need to concentrtate abit more and why remanin anonymous,,, are you not brave enough to put a anme to your posts!!!!!

Anonymous said...

I am assuming that if "not a penny" exchanged hands then your programme was funded by the Impact Trust. A charity which in the past 18 months was dictated to by Mary and Kimmy in which they decided what families were entitled to money, yes they did fundraise but they fundraised to pay for their own bills, families were not allowed to use this money to cover the greater costs of therapists. How is this even ethical. Such a great charity and so efficiently ran in the past when it was in the hands of dedicated parents and not the receivers of the money!

Anonymous said...

To Sue: you wrote "and may i also add not one penny has changed hands!!!" Explain this please? Are you availing of ceats services free of charge? If this is a misunderstanding then I apologise but perhaps you need to be a little clearer in your comments. I have no desire to defend my right to anonymity. If you wish to reveal who you are then that is your right too. How brave you are! To Brendy, if you read a post further up the page from another Anonymous in July 2011 then you will see how much ceat charges for their services.

Sue said...

Firstly i apologise for my spelling!
I am just lost here, and would like to know WHEN northern Ireland became so forward on supporting families with Autistic children??? We moved last year to access better schools, better speech and language therapy and all the other support services that are just NOT avaliable in NI!! So when has this amazing change taken place over there? Even to access Makaton courses and so on they tend to be miles away. When a peadiatrician from a hospital reccommends that the only people to offer support and advice are from a group called CEAT then im sure as i did i grabbed the chance of getting help from a group that understood and cared. Yes if you want a shoddy service from people who dont give a damn then yes take it,, it is personal choice ,, but when a family is desperate to find someone who understands and can help then its like every thing else people are going to take it. We all have a choice,,, i made mine to have CEAT work with us and I dont regret that decision one bit. Its like everything else in regards to this blog,, people are moaning about spending X amount on a service,, but do they moan about paying for thier Sky package or private dental care????? If the support was in the system free of charge and was of any good it would be great but it aint,,, so stop ya moaning,, if you dont like what CEAT offer then walk away,,,, everyone in this world wants it all for nothing,, sorry but the world aint like that,, if your child is important and you want to improve thier quality of life for the better then i would give up the world to get it. How many of you moaners would consider getting out of bed in the morning and working for FREE?????? Not many!!!! So there you go CEAT is a buisness,, who employ staff, is there any difference??? I think not!!!

Anonymous said...

And to Sue - I seriously believe that you are being economical with the truth regarding your identity! And unless I have misunderstood your words "and may i also add not one penny has changed hands!!!" - if you have not had to pay ceat as insinuated, then there will be many parents wanting to know why they have had to pay thousands!

carolinem said...

I will be sooo sorry to see Mary and Kimmy go and I cannot believe my eyes at the utter s**t I have read on this blog. I have Mary in particular to thank for helping both my children and I often think she didn't charge half enough, the woman is worth her weight in gold. Sure we paid the hourly rate while Mary was physically in our home but the free hrs we spent talking on the phone were many. Not only was Mary our consultant I believe we became great friends and when I was stressed or down Mary was there to council me and I will be forever grateful to her. Houses are only bricks and mortar and yes we did remortgage but I would gladly live in a tent so that my children would get the best and the best is what they got. Children on the autism spectrum are entitled to alot of financial benefits in Southern Ireland so I can only assume that parents are lining their own pockets if they are not willing to spend said benefits on their children. Money is nothing and I would rather be penniless and pay for an amazing consultant than do a half arsed job myself.

Anonymous said...

Sue from Cambridge? The back of beyond? Didn't know Ceat travelled to Cambridge. Wow aren't you the lucky one - free service from ceat and visits to your home in England. PLEASE BACK UP YOUR COMMENT that no money changed hands. There is no spelling error here. And you know this Sue. If you wish to challenge other posters, show how "brave" you are and back up your comments with the answer we are all waiting for! How did you manage to get ceat's services for nothing? I for one need to know so I can see if the same applies for my kid! There are numerous families who need to know the same!

Anonymous said...

I want to begin a program for ABA for my daughter who just turned 4 years old. Where do we go to find information about how much it will cost?? We live near Newry.

Her nursery school hasnt wanted to help her since she was diagnossed

Is there someone who I can phone about having ABA set up in our home and tell me how much it will cost? Am I getting my hopes up for nothing. What is going on for children who have autism? It;s been six months since my daughter was diagnossed and no help!

Minervabradley said...

Folks,if we are all interested in accessible, effective provison maybe we should step back a bit from this.The costs of providing ABA through what Sue has described as a 'buisness'(& I wouldn't have known the amounts except for the earlier Anonymous post) are very high, but that's what happens when the service you already pay for (through taxes & national insurance contributions) is so rubbish. The gaps are filled by other groups, whether this is a vol. group (& the NAS, PEAT, Barnardo's, Autism Initiatives, Cedar etc do a very good job with the gaps, not nearly enough because they operate on a shoestring budget)or a 'business'. Most of us can't afford privatised medicine or autism services -we have 5 kids, no Sky & our car is 12 years old so there was never any possibility we could pay a big sum of money for anything outside health/education but I do not condemn people who can. We are told by Trusts & ELBs that 'ABA is too expensive, & there is no evidence it is effective'. We've covered the last bit, we know it is effective & they are happy to promote TEACCH & 'Eclecticism' which have absolutely no evidence for effectiveness.So already we are paying very dear for stuff that doesn't work. Why not write to all your Trusts & ELBs asking for staff costs associated with autism & the number of children with autism that they make provision for. Then ask them why they don't sack at least half of them & employ BCBAs to deliver personalised home/school programmes, & train CAs & proper 'Intervention workers'(instead of the tea & sympathy stuff you get in some Trusts)to support them instead.CEAT & PEAT or whoever can bid for the training contracts just as other providers do.

Anonymous said...

Just now reading all these posts. There's a real split down the ceat families. I ask all of you who contribute, which of the 2 directors did you get and if the replies come back as I think they will then you don't need a genius to spell out why there is such a divide. Not every family gets the same deal. End of story. How come only one of the directors gets so much fan mail? Figure it out for yourselves.

minervabradley said...

Anonymous, near Newry- think first of all, you should be asking for a Statement of Special Educational Needs. Talk to your nursery principal & see if they will undertake this - if not, as far as I know you can initiate this yourself by writing/phoning the Education & Lib Board for your area - prob Southern.Look up the Code of Pratice on the Dept Ed website. Your child will need support this year to get ready for P1.

You should have an autism co-ordinator in your Trust- ring her up & ask what services they intend to provide for your 4-year old. Don't get your hopes up though, they will probably offer you very little, and almost certainly no ABA. If you wait til Monday the new Children's Pathway document comes out, which spells out what Trusts must do after diagnosis in terms of family support etc- look up the RASDN website & cite the details to your Trust!As for ABA there are 2 routes- employ the services of CEAT or get trained yourself, with ABA supervision through PEAT.Investigate the costs & the services- I should think both can travel to Newry. If anyone knows any others, please add.

Michelle said...

Continued: from above:


It is certainly the case that our children’s future lies in our hands and to that end, CEAT offered us as parents, extensive on the job, as well as full day training opportunities. I know many CEAT mums who participated in the day to day work on the ground, on their knees and then went back to being ‘mummy’. At no time was our parental role substituted by an ABA consultant or therapist. We simply enforced the main learning targets and behaviour rules outside the ABA sessions, in our daily routine.

CEAT taught us how to transform our son from a destructive, aggressive toddler, with a few single syllable words, into the social butterfly that he is today.

Thank you for raising the issue of thinking about others in Northern Ireland who are unable to avail of the personal and private ABA programme that we have. We often think about other families and to that end, have raised money and made donations both to CEAT (which has helped to part-fund less fortunate families) and the Impact Trust. We also meet with many families with little means, bypass CEAT completely and direct them to PEAT, the next best thing, in our opinion, to CEAT.

Waxing lyrical about a Mercedes (that we do not have) is not our style, or any other CEAT family’s, that I am aware of. Rather, we are parents who have simply made an informed choice, when there was nothing else available, to the detriment of our bank balance, but the betterment of our son and family unit.

Thank you Kimmy and Mary for the long hours, over and above you were paid for, for your passion and commitment and for sharing your boundless expertise . We could not have done this without you and your friends here in Northern Ireland will miss you greatly. xoxo

Sue said...

In response to the ealier posts, i wish to clarify what needs answering if i may?
When as i said before i was first told about CEAT by a peadiatrician in the hospital in Fermanagh, so in the back of beyond 90miles from Belfast as far as i was concerned not here on the mainland!!!
I called CEAT and was offered a consultation, which we grabbed the oppertunity of as there was at that time no help as services for Autism were shocking over there. We visited CEAT and they offered us help, yes at a charge,, which to me was worth every penny. They solved our issues,, it wasnt related to ABA it was something else which i am not going to go into as i think its personal to us. But any way I paid for that service, i saved , i went without so my child could benefit, and still to this day we have never looked back.
The other times I recieved support and help from CEAT was in the form of after care, in the form of a call, email information and so on, there has never been any charge for any of this,, but no matter at what time I contact CEAT they are always there for me and us as a family. Thats when i was referring to not paying, sorry if my post confused. I never recieved funding from the Impact Trust, in fact we raised money for them,, £5000 to be exact, I was kindly offered support but at the time we no longer needed any so my thinking was other families would be able to benefit from it by being able to access a service that has a charge,, no problem to me what so ever. I was more than happy to think someone else would be able to get the support and help like we had. No matter what people think I can only comment on my experience and I think CEAT have done an amazing job with the work done with my child,, if i had to do it all over again i wouldnt change a thing, I would go wothout to get what my child needs.
Also for clarity CEAT have never given us home visits here where we live now.Since moving to an area which has better services in schools and outside we have been extremely lucky. Its just a shame that more positives can not be taken from this issue and instead of slateing people put your energys into writing to MP's, the Government, Education Boards??? Why are these people not catering for our kids??? Our kids have a right to an education, whether its ABA, PEC's, Makaton or any of the other things,, it should all be avaliable with in a school enviroment. If people do not stand up and start shouting for better services the kids will never have the options that they should have and whether you agree with it or not, people will scrimp and scrape to get a service as thier kids are so important to them. Dont get me wrong i was very angry while i lived over there,, and i was there for 23yrs,, that nothing,, nothing was in the system to help me of my child. Basically diagnosed and then left to get on with it. So forgive me if I praise the one service that offered me help and got results but I saw the results we got and to me just like Mastercard they are PRICELESS!!!!

Mark McCartan said...

First of all, just for the record, we had Mary as our supervisor, she was excellent and we had no complaints with her over the 5 years we ran our programme. I guess her only problem is that she might tell some parents the truth and they dont like that. I know she would have no problem telling psrents they need to do things better or differently and some people just cant take critisim and respond by slagging the person instead of listening to someone with more knowldge or experiance than them. Second, CEAT is not a charity therefore they need to be paid. £38 pound an hour is not excessive, how much do mechanics, joiners etc charge? They also do not charge for phone calls and emails. When we started our programme CEAT were not in NI and we used a London based company called LEAP, they charged for everything, emails,phone calls, time spent working on tyour programme in their office. When we moved to CEAT our cost more than halfed. Thirdly, PEAT do not offer the same programme as CEAT, they cant as they are a charity. People should remember that money paid to theripists does not go to CEAT. If peoplr want to train there own then they can-new ones are cheaper. Finally, why are people not using your real names, are you all ashamed of what you are saying?

Anonymous said...

I am a mother who was so worried about my sons autism , Their were no medical professianls who shared this worry or who cared. I had to do my own reserch into autism as doctors speech therapists etc did not want to know unless you waited 6mths to a year to avail of any help. I naturaly was not happy about this. so through meeting another mother who had hired ceat several years ago and was extremely happy with their service I decided to contact ceat. It was the best decision i have ever made.
We started our programme in july of this year and we havent looked back. our son was completley non verbal he can now communicate via pecs and verbally he has said over 70 words , he is such a happy little boy and i have no doubt in my mind that he would not be where he is today without the dedicated therapists consultants and directors of ceat. yes i admit it is expensive . but everyone needs to make a living . we have had to make a lot of sacrifices but our sons future depends on it and the amout of work that goes into each individual childs programme is huge our consultant often works after hours making programmes which they do not get paid any extra for . thank you all at ceat and good luck to mary and kimmy in america xx

Siobhan said...

Northern Ireland is a bad joke when it comes to autism provision of support and services. We were very fortunate to have money and had the opportunity to buy what we needed. We feel blessed to be able to have done that for our child who is now 11 years.

Having met a particular person at CEAT I cant imagine working with that person and to give that person one penny would have been unthinkable. We interviewed many ABA consultants and I can assure CEAT did not rate. OUr money did the talking and we bought what we wanted not what was on offer in Northern Ireland.


I would like to respond to the comment regarding living in a tent. I dont think you did live in a tent and as someone who has had a 30 hour a week program living in a tent and having a program as you know, would not work. You must have had some money somewhere. I also do not believe that because I can afford to pay for provision that I am a better or worse parent. Please think about your words and what they imply to others. There are thousands of parents in Northern Ireland who will never be able to pay the ABA fees that we and you paid. Lets get real and be honest here. Our child's ABA program cost a packet and the consultants did very well from us. It was purely a business transaction. Dont presume it's anything else and certainly not altruism.

Anonymous said...

In response to Siobhan:

You state, "Our child's ABA program cost a packet and the consultants did very well from us. It was purely a business transaction. Dont presume it's anything else and certainly not altruism."

Please tell me why you think that there is ever anything altruistic about any of the services provided, either state funded or those provided by the private sector. This goes not only for ABA providers, but also for teachers, doctors and anyone else with a job. At the end of the day all of the consultants and specialists that helped your son put themselves through university, paid money to be trained (one would presume), and can you honestly tell me that all you expect to motivate them is the fact that "they make a difference".

Everyone is entitled to make a living. You cannot expect these people to work for free and the only reward is knowing that what they are doing is altruistic. Last time I checked, altruism doesn't pay the bills (or the university fees that these professionals paid to gain their qualifications). The ELB's and Trusts employ people to work for them, who also receive salaries. Remember, just because we don't hand money over to them to provide a service, doesnt make them any more altruistic than those in the private sectors.

That being said and to play devils advocate, the services I have received, whilst in part being a business transaction, have been so much more. The people who work with my child are amazing individuals who have no idea how much I appreciate them.I know my consultant works outside of their working hours to ensure that my child's needs are addressed as soon as possible, that any behaviour that might cause my family or my son distress has an appropriate and effective behaviour plan put in place, and the phone calls and emails at the weekend and way past working hours that have been answered with concern have been countless. All of these extra hours are unpaid and are done out of the goodness and concern for my child and familys well being.

While the "business" may not be totally altruistic (and lets face it, that is ridiculous to expect), my consultants are very much altruistic and have the interests of my child at heart. Not many people work overtime for free. These people work over and above their hours to make a difference. And what a difference they make.

I am an old, retired CEAT family and I couldn't have done it without Kim and Mary and their wonderful team. It has been a tough ride, but what we have gained has been worth it. Kim and Mary, we wish you all the best xx

Siobhan said...

Just one more thing to say. It sounds like most of the comments to this particular topic have been parents, and parents who have young children.

If comments have come from parents whose children are now adults it would be interesting to hear your views. The media and charities and just about everyone else portrays autism as a "childhood" condition. there are as many adults with autism as there are children, maybe even more.

In 7 years my own child will reach adulthood and ABA or not, I am not very optimistic that his life outside of our family unit is going to be any better or different than it is now.

When your child grows up and is lucky enough to find employment, it only takes one mess up to lose that job because of lack of understanding and intolerance from others. He or she will be out on their ear the moment they commit a social faux pas or two. There is more to your child's life than the here and now. OUr children's future should be shaped by them. While we worry so much about their childhood will our adult offspring have the opportunity to just be? All the ABA in this world won't make that happen.

Siobhan said...

To anonymous. If for some reason I stopped paying our ABA consultants they would have dropped our family like a hot potato. Even though we got on great, and they genuinely seemed to like my child and admired him the necessary program that my son needed would no longer exist if the money flow ended.

The point is that ABA should and MUST be paid for by the government. Our children's autism intervention should not be left up to whether we can pay or not pay. Others here have said how 'caring' etc CEAT have been. That may be, but in our case, no money no ABA, no caring. End of so then where would we have been. Its just not the best way. This isnt about private ABA but its about accessing good interventions for all children who have autism and also for adults too. Lets not forget them.

SarahMcD said...

What does CEAT have to say for themselves with all that is being said about them?

Ive only heard of them through this blog. Do they know this is being said? My son is only recently diagnosed with autism and I have been searching frantically for something to do. All the research points towards aba and eibi. But by the sounds of if the trust don't provide this? Is this the case?

I am a working mum and don't have the time to do therapy. I need to work to run a family and maintain my sanity. Ha. PEAT offer parents training and i am considering it but maybe getting a therapist in to work with my son. What else is available to me. What is CEAT? Any less biased opinions out there?

Anonymous said...

First of all I am happy with the servive CEAT provides, it is expensive but worth it. I very much liked Marys directness. However can I just say to the parent that attacked parents in Southern Ireland that line our pockets? Prehaps she may just need to reserach that subject a little better, I am a southern parent that had to come up to Belfast to attend CEAT so no we dont get vast sums of money the system is even more complex and while we do get a grant it is used and it doesnt quie cover tutors, and we have to show evidence of that. So for me CEAT has been great.

minervabradley said...

To Sarah McD (and Siobhan)- I am an 'old' PEAT parent- my child is a teenager & has left school- but I'll try & be objective. CEAT were not available when my child was diagnosed, we became involved with PEAT. School & my child's CA both went for training, and after transfer to secondary school, PEAT advised staff there too. They gave a great service on a tiny budget (still do)but it is really up to you to get to grips with the training & use your own skills & resources. This would always have been my attitude anyway, your children are yours for life& ultimately, it's you who has to deal with whatever comes your way.

Now there are lots of excellent Master's students , both at UU & QUB, who would be great therapists & I would happily have used that resource if it had been around. My child is now at university- first year was a bit of a disaster at first (inappropriate interruptions, arguing, 'insulting remarks', constantly getting up & walking out of lectures for a breath of air etc) so PEAT came & observed & drew up a programme in consulation with mentors & lecturers. Now a very settled 2nd year,living in a flat & travelling to classes alone every day. It has been brilliant,but of course it wasn't free, we had to pay for it, albeit at a subsidised rate.

CEAT charge substantially more for their work, and it's clear from this blog that some people are deeply unhappy , but that others are more than pleased. I am friendly with a CEAT parent who works long hours in a very demanding job, so she hasn't the time to be a 'parent-therapist' & it is working really well for her. I guess it boils down to what you can afford, and also your own attitudes. Just be informed-ask as many other parents as possible, go on the internet & just -as with anything else you enter into- read the small print (& ask for up-to-date Access NI checks with any therapists you take on).

Sorry for the long post, but one last thing- most people on this blog seem to be parents of young kids and you probably haven't started worrying yet about teenage stuff like underage sex, & drugs& drinking, unsuitable boyfriends/ girlfriends, raking round the country in fast cars etc- those were my major worries with my typically developing kids(and any of these behaviours can be managed if parents 'think behaviourally' )- very few worries like this with my child with autism. So it's all relative- you will always worry about your kids growing up, typically developing or otherwise.

Anonymous said...

I agree with directiveness and honesty but there is a big difference in being rude obnoxious and unethical at times.

Anonymous said...

I have a question for the real supporters of CEAT. When (as in what date) did you commence your employment of CEAT's services? I honestly believe all the good press comes from the families who availed of CEAT's services in the early years - ie 2002/2003/2004. After which many more families signed up and then they moved their services to Italy and beyond. They spread themselves too thin. Not enough hours in the day or week to adequately supervise the numerous families they took on board. They got greedy. Nobody received the same attention and support to their child's programs as those families who did in the early days. So while I concur with the "early Ceat families" and understand their devotion and loyalty to Ceat and their early services...they took on too many new families (in NI, the RoI, Italy) and did not have the man power to spread themselves so thin. The older families of the early days seriously need to understand and take on board the plight of the families of the recent years and consider how the quality changed for the newer kids whose parents enlisted Ceat's help. It is all good and well for those of you who got what you paid for in the good old days. But Ceat changed. For the worse. We newer families wish we received the same services you guys got before they spread themselves too thin. To the "old Ceat families" - how would you feel if you were us? None of you have ANY idea how so many of us have been treated. Spare a thought and show some respect for the families who didnt have the same success as you for whatever reason. While you fight us on this blog, we do exist, many of us. There is no personal vendetta here. We are all real just like you - but the difference is that where you had a positive experience with CEAT, we DID NOT!

AutismNorthernIreland said...

To posters - for those of you who continue to post from the same IP address but with different names and stories, your posts will not be displayed. If you wish to provide free advertising for CEAT or any other organisation I suggest you ask that organisation to pay the appropriate fees in an appropriate media. If your post is not displayed you now know why.

Slanging matches won't be accepted either and that goes to you 'Kate' or whoever you are from London.

Anonymous said...

Dear Mr Blogger
you say ABA isn't "rocket science" .....so have I wasted 3yrs, £7000+ in fees gaining a MSc in ABA in something so 'simple'? yes ABA is not rocket science but it IS a science non the less and am offended you have belittled it.

Dear Karola
so should I have saved my £10,000 getting qualified as a BCBA (and yes re-mortgaging my house in the process)not including my first degree and the costs associated with renewing my bcba and just advise parents to purchase a training dvd instead? it was your husband who always taught us ABA should always be supervised by a board certified behaviour analyst. Have I wasted my money/time getting qualified in something that can be substituted with a training dvd? surely handing a parent a dvd does not replace face-to-face individualised consultation/expertise?

parents deserve better for their kids.

Anonymous said...

I agree with the Behaviour Analyst that posted. Though, the DVD is not handed out, it is sold to parents at £69. It is like buying a DIY manual when what parents need is frequnet and regular contact with an expetr. The website www.simplestepsautism looks like one mega sales pitch, like 'we have payment options for every budget' and 'paypal' and shopping carts. This looks like a business to me, a very swish one.

minervabradley said...

Anonymous BCBA- was Simple Steps not produced by BCBAs? As far as I can see it doesn't hand out pre-formed ABA programmes to shortcircuit direct contact with a qualified provider. It just provides the type of information about ABA you get from a book-except it is a lot more accessible than some ABA books I have tried to read.Intended primarily for those of us who don't have a couple of science degrees, it's about access to good quality information. Or have I misunderstood?

Anonymous said...

I am surprised by all the negative comments. We had a very positive experience with CEAT. They called to us about every six weeks to update the programme and always came up with great suggestions for areas in which we were experiencing behavioural problems. My home tutors loved working with the CEAT programme and found that they could easily pick up where another tutor had left off. My son learned how to sit down and to accomplish tasks that he had previously been unable to master, while having fun at the same time. We are now finished with the programme as my son is now school age.Best of luck Kim and Mary.

Dolores Rooney said...

We have used the services of CEAT for over 5 years for our daughter who has a chromosonal abnormality, severe learning difficulties and autism. We were told by medical and educational services that we were lucky to receive an early diagnosis when our daughter was 2 years old because early intervention was so important.

However when we tried to access services for her there was little or none available from the state. We received good advice from SLT services and an ASD outreach service however this was so infrequent that it had no effect whatsover upon our daughter who had no verbal or non verbal communication at all. Their advice was clearly based on ABA principles in an effort to try and motivate our daughter to communicate at a most basic level. When I asked one Consultant if she would recommend ABA, her reply was that she wouldn't want any child of hers speaking in an American accent. At that point we didn't dare to dream that our daughter would even say a word regardless of accent! When we requested an increase to the level of SLT that our daughter received, we were told that the therapist could come out every week but it wouldn't make any difference.

It was at that stage we looked at CEAT. They were the only organisation that gave us hope that our daughter was capable of communicating.It was not false hope. After 5 years of very hard work from CEAT, her supervisors and therapists our daughter can express her needs clearly and is a very happy little girl. ABA will never "cure" her or mask her severe learning difficulty but it has given her the tools to participate and enjoy life more fully. An early intervention service such as this should be available and funded by the state for all children. Unfortunately it is not. That is not CEAT's problem and all our energies would be best spent lobbying and working together for all our children.

Thank you Mary and Kimmy for the service you provide and for leaving it in such safe hands.

AutismNorthernIreland said...

To Delores Rooney: I have to comment on your appalling experience, which unfortunately has been all too common. I wonder where your daughter and your family would be had it not been for the fact that you discovered ABA? It seems to be purely a twist of fate that some parents discover ABA while others have their children condemned to the world of LD/Special Schools and ultimately day centres and lifetime dependence because of a diagnosis that is laden with preformed judgements from others. This blog entry was predicated on the comments received from clients of CEAT, many of whom were very unhappy with that company but moreso, unhappy with the tremendous cost of helping their children via ABA. Acquiring ABA should not be a matter of luck, or happenstance. I, and I am sure all of you know parents whose children you know, beyond the shadow of a doubt, would have benefited from intensive behavioural therapy but were 'put off' by a 'professional' or who simply could not afford it. This is the central point of the argument I am trying to make here.

Where do all the 'good' and positive stories from parents emanating from this post go? into the ether? to be circulated amongst a very small group of like minded 'ABA parents'? For the majority of parents,they will never 'discover' ABA and it will never be suggested to them as a viable option. This is a huge problem - ABA remaining a private sector only option.

What can you do, Delores, or you Mark, and others to help the hundreds of parents each year whose children are diagnosed to acquire ABA for their children? Maybe you are helping, maybe CEAT is helping, let's hear about it. The special schools and the units are full of kids in Northern Ireland who have autism who are NOT getting ABA. ABA in N.Ireland is for a very select few. Saying how great it is means very little unless others can hear about it. You will say of course, and you would be right, that 'others' are not listening. How do we make them listen? I don't know - I don't have the answers. See here to read about the 28 US states, including Wisconsin where Mary H Smith and Kimmy Wrobleski are headed, that provide ABA funding to families:

http://www.autismvotes.org/site/c.frKNI3PCImE/b.3937857/k.D468/Michigan.htm

Does autism look different in Northern Ireland than it does in the US? What do they know that we can't accept? Where is the unified voice for ABA in Northern Ireland? We only have PEAT and CEAT - are they working together? Do the CEAT parents talk to the PEAT parents? Do you share resources? Do you compare notes? Do you have a unified strategy?

The private sector collaborating with a parent's charity - would that work? Are there ABA cliques in Northern Ireland, your side vs 'their side'?

How does that serve the hundreds of children who will be diagnosed this coming year? At the mercy of ill-informed paediatricians?