Monday, 23 April 2012

Autism in Northern Ireland - a Big Question from a Loving Parent

I received a question to this blog today and thought it deserved it's own blog entry.

The comment speaks for itself. What it doesn't say is why this parent has not been informed by Health and Education 'professionals', or voluntary agencies that exist in Northern Ireland. How is it that a parent cannot know what intensive intervention is, much less how to get it in Northern Ireland?


The comment: 

"what is this one to one therapy that can help ur non verbal child speak again and does the nhs help with the cost, can someone send me a link so i can find out more about it and how much it costs. I just feel so lonely atm and tired im tryin everything i can think of and being strong for the rest of the family. I cant sleep - my mind never stops. I just want to wrap my daughter up and hide away from the world but i know i can't do that. I'm  reading everything i can  and working with her everday.   I'm not working as I have to look after her. Im very intrested in this one 2 one treatment."


The Answers? 

Department of Health ...
Department of Education....
Autism NI.......
National Autistic Society
CEAT......
PEAT.......
and so on

What about all the thousands of parents out there in Northern Ireland who spend their time raising funds for charities? Can you spend a minute and help this fellow parent out? Can you tell this parent your experiences of how you accessed ABA/Intensive intervention for your child? How much it cost, where to get it, who to phone, how to apply for funding?

I suggest you go to your autism coordinator, there is one in each Trust and put your questions to them. Then, contact charities like Autism NI who purport to be THE Autism Charity in Northern Ireland and ask them for help in obtaining intensive 1:1 help for your child.

If and when you don't get that help, come back here and read the responses I and others provided in an earlier post here .

Read this document, print it and take it to your autism Co-ordinator. http://www.researchautism.net/publicfiles/research_report_001.pdf

I'm sorry to say though, that real intensive early intervention for children with autism is not available on the NHS or from the Department of Education. In Northern Ireland, you either pay for it yourself, or develop a program yourself with people like PEAT (Parent Educators as Autism Therapists). I suggest you run, don't walk, to the phone and find out how they can help you now. You can get help from PEAT if you are low-waged.  If you wait for help from NHS/Education, you may be waiting a very long time.
PEAT: http://www.peatni.org/  
T: 028 9032 4882
E: info@peatni.org

7 comments:

minervabradley said...

We followed an ABA-based home programme- we were trained by PEAT, and we didn't employ any therapists to help with the programmes, just ourselves & our older kids, we all kept the same consistent approach, breaking the learning down into small steps. It was a few years ago so I think things have changed a bit price-wise,there is now an introductory training course & on-going 'PEAT' playdays once a month. At the playdays,your kid(s)play/have some social skills training for 2 hours while parents have behaviour management skills training, have seen this first hand & parents find it very rewarding (& the kids have fun). If you are interested, please ring PEAT & find out a bit more.

You aren't likely to hear the evidence- or anything much positive- about ABA from health professionals. They keep referring to ABA as a 'treatment' (in fact, as the research article link on the blog shows) it is the science of behaviour, and programmes (such as Early Intensive Behavioural Intervention, EIBI)are based on the principles of learning theory. You may well be told by SLTs/ clinical psychologists(as we were) that is is exhausting for parents, causes so much stress, costs so much, doesn't work... well, we got DLA which more than covered the costs -hope you have applied for this- & as for exhausting & stressful- you know how exhausting & stressful it is to have a child who doesn't speak, doesn't sleep, doesn't interact with the rest of the family...which is how our son would have stayed if we hadn't put in the time to do 1-to-1. And it does work, for many, many people.It is funded by health insurance in many American states (& they wouldn't do that without evidence of effectiveness).I think many 'professionals' hate it becauseit shows up how their approaches- patchy services without an evidence base for effectiveness- have let kids down.

We got a free introductory pack of 'Simple Steps'. It is now an on-line tutorial as well as a DVD, I'm not saying you should buy this (it is £69, I'd wait til you were certain you are going for EIBI if you want to buy) but worth a preview to see what ABA-based programmes are like.
http://www.simplestepsautism.com/product/. The earlier blog recommends some great books, you can ask your library to order them.

Wish you all the very best whatever you decide to do. Wanting to actively make a difference yourself is the first step, you've already taken that.

Anonymous said...

I have found the ABA principles invaluable helping my child though my approach has turned out to be a bit eclectic purely because that's what has suited him. My starting point was very different though as he had speech. I do though, know lots of people who have had fantastic results using ABA on children who are non verbal.

As stated in one you your earlier posts - caudwell are funding in northern Ireland. The application form is on their website. If you are pursuing ABA you would probably get more for your money speaking with PEAT. Although I haven't used them for some time - I always found the approach of my therapist to be that educating the main carers gave long term benefits. I personally will be forever grateful to my therapist who gave me the knowledge to make life long positive changes in our house to help my child.

Best of luck and chin up. If it's your thing - try to find a group of parents who you can talk to. Surrounding yourself with positive people makes all the difference.

Niall said...

PEAT are well respected and should be able to provide some advice:

http://www.peatni.org/

EIBI programmes should be supervised by a board certified behaviour analyst. To find a local BCBA, visit www.bacb.com . Your local BCBA should be able to tell you about options available locally for accessing ABA services for child.

PEAT said...

PEAT is a NI charity providing practical behaviour support and training, using evidence based practice, to parents/carers of children and young people with Autism as well as professionals working with children/young people with autism. PEAT employs Board Certified Behaviour Analysts (www.bacb.com) who work in the community all across NI.

Our mission "PEAT exists to help children and young people with autism realise their potential by providing Applied Behaviour Analysis (ABA) training and support to their parents and carers. ABA is a scientifically proven approach, tailored to individual needs, offering a choice to parents and professionals."

ABA helps parents of children with autism understand their child's behaivour. By understanding the things that maintain inappropriate behaviour we can change it. ABA is also used to teach new skills.

Parental training and involvement are the key elements of PEAT. By knowing how, parents can help their children maximise their potential.

PEAT is able to offer a 2 hour home visit to families recurrently every 4-6 weeks. During home visits programmes based on the application of the principles of ABA are set up. These home programmes are designed around the child's individual needs. The cost of a 2 hour home visit is £75 (£50 for households with less than 25k annual income). PEAT recognises that Autism intervention should be provided free-of-charge but unfortunately this is not the case.

Families with a household income less than 40k can apply to The Caudwell Children Charity (www.caudwellchildren.com)for funding to support their ABA home programme. PEAT can provide more information about this as well as assisting families with their application if required.

PEAT also runs 'family days' on the last Saturday of each month currently held at Olympia Leisure Centre at Boucher Road in Belfast. These family days provide a parent training workshop delivered by a Behaviour Analyst alongside supervised play and a social skills group for their children and young people (ASD and siblings). These family days enable parents to access vital training and network wtih other parents without babysitter limitations. The supervised play and social skills group provide the children and young people with the opportunity to have a fun time, making new friends and increase their social skills. The social skills group is also delivered by a qualified Behaviour Analyst. 1:1 supervision is provided for children if required.

Please feel free to ring PEAT for further information and advice 028 9032 4882 or email info@peatni.org

Anonymous said...

i am the one who asked this question what i forgot to add is my daughter also has a learning disabilty. I would like to say a big ty to this blogger for posting my question and to everyone who answered it. My doc has advised me to start meds for myself but im in 2 minds, I dont want to be doped up and just ride with things i want to take actiona nd help my daughter. She was formaly diagnoised 2 week ago so i dont know who my AC is yet. I have read so much in the past year but i have got more info in the past few weeks on this blogger that i understood and took in.

thanks so much again

Anonymous said...

i rang PEAT this morning and got talking to a lovely girl. I feel a bit better as i see another path to go down to help my daughter!! instead of reading and reading things on the net im waiting to speak to them so im getting the right info, i cant thank this blogger xxxxxxxxxxxxxx

Anonymous said...

Ceat is no longer available in northern Ireland