Moving from Texas, USA to Bristol, UK. How much would 40 hours/week of ABA cost?

[ekagrachitta]

Hello Mums!

I am considering a move in the next couple of months. I have a 2.5 year old child with mild autism. He attends a ABA based clinic and is trained 1:1 for 40 hours a week. The clinic has a BCBA (board certified behavior analyst), and around 20 "trainers" whose daily routines and the overall programs are set and supervised by the BCBA. The health insurance pays for most of it..apart from our deductible.

Are there any comparable facilities available in Bristol? How does the health insurance work? Do they pay for ABA? If I have to pay from my pocket, how much would it cost for a similar program?

I am confused by the variety of responses to related questions in the archives. Is it imperative to depend on the government aid for ABA? What are my options?
Any personal experience narratives would help. Thank you all!

Is your health insurance transferable from US to UK?

Tutors cost between £8 per hour to £25, but with a national shortage it is hard to find the lower rates. BCBA Consultants charge between £60-£100 and hour and usually do around a day a month. A Supervisor, if required, around £30-40 per hour.

There is some flexibility depending on who your hire, how fast your programme is moving and how much you are prepared to do yourself.

The problems start imo when they are school age as schools are very reluctant. Therefore it is hard to get ABA into schools unless the LA agrees it is necessary, and they are unlikely to, because if they do they are required by law to fund it. It's political. However, there are some success stories where schools have been convinced, - unfortunately they are often when the schools themselves are struggling with behaviour and feel it is in their interest to go against LA advice iyswim. For someone with 'mild' autism, it may be hard to convince a school that they can't meet the child's needs without ABA.

Do your research. Make lots of phonecalls and speak to Heads as well as SENCOs.

hth

There are some ABA special schools in the UK, but tend to take only children at the more severe end. This isn't because they are inappropriate for milder cases, but because LA's are usually only persuaded to fund children in them when they have become a big problem for them iyswim.

Sorry for painting a bleak picture.

Want to come back here after Friday night and maybe add something!

Bristol - Arghhh! It has some of the most poorly performing schools in the country.

That's why some folks live in South Gloucestershire - you know, the one where the Head of SENS doesn't believe in Statements and Riven's LA.

Or they live in Bath and NE Somerset.

Anywhere but Bristol

Yes Bristol itself does seem to be a bit of a nightmare, although there is an excellent solicitor that is based in Bristol who seems to be very good at handling them.

I live in Bristol and have a child at a Bristol state school. The bad reputation is at secondary school level (but the situation is improving and as your child is only 2.5 years old that is some-way off yet). Bristol does have a very good reputation for early years education. The following link may help provide information about early Years education www.bristol.gov.uk/sites/default/files/assets/documents/sen-5-early-years.pdf. There is also a charity called Supportive Parents for Special children SPSC based in Bristol which is run by parents for parents and may be able to help with specific information for your child's condition.

I live in Bristol and have a child at a Bristol state school. The bad reputation is at secondary school level (but the situation is improving and as your child is only 2.5 years old that is some-way off yet). Bristol does have a very good reputation for early years education. The following link may help provide information about early Years education www.bristol.gov.uk/sites/default/files/assets/documents/sen-5-early-years.pdf. There is also a charity called Supportive Parents for Special children SPSC based in Bristol which is run by parents for parents and may be able to help with specific information for your child's condition.

The situation in the UK is very different from the situation in the US.

It is very hard in the UK for children so young to even receive a diagnosis. In my experience, for a child to receive a diagnosis at such a young age they need to be very severely impaired. This is unfortunate.

The year a child is 3 on the 1 September they are eligible for 2 hours a day of school from the local education authority (in this case, Bristol LEA). The very best scenario is that the schools will pay for 10 hours a week of ABA, but you will have to fight for it. The year the child is 4 on September 1, the schools provide about 30 hours a week of education.

Children under the age of 3 are the responsibility of the NHS, and the NHS does not provide ABA. The very best treatment scenario for 2 year olds is about 2 hours a week of "social and communication clinic," which isn't worth your time.

Very few people in the UK have private insurance, and ABA is definitely not covered even if you do have a policy. EIBI is considered an educational need, not a health need. Insurance coverage is a very recent policy in the US as well.

The only way to receive 40 hours a week of ABA in the UK for a child aged 2.5 with mild autism is to fund it yourself. If you can't fund it, I would seriously consider delaying the move for a few years because early intervention is so very important.

I am sorry to deliver such news. The situation in the UK is bleak compared to the USA.

I have a three year old DS and fund a home ABA programme myself (have just started recently) about 25-30 hour week (we cannot afford more than that). It is costing in the region of £2000 a month, not including workshops with the consultant, which will happen about every six weeks and cost around £800.

I will be trying to get some funding out of the Local Education Authority but do not have high hopes of that happening any time soon. I have also applied for DLA and Direct Payments from Social Services to try and contribute. No decisions so far, so no money from anyone so far.

PS I do have private health insurance and the cost of initial diagnosis with a private peadiatrician and SALT was covered but nothing else after that. On top of the ABA I also pay privately for weekly SALT at a cost of £80 a session.

Perception: It is in fact true that the NHS does not provide ABA (no matter what age). Autism therapy is seen as the province of the education authority not the NHS. No ABA or funding for it would be available ia the NHS (and I have made enquiries about this).

My DS was funded for ABA 35 hours a week from 3.11. We started ABA privately at 2.10, and had applied for the statement at 2.7. The LA dragged it out at every stage so it took that long to get to tribunal and get it ordered.

You will have to self fund for at least a year as the LA will almost certainly drag it out that long. And pay for expert reports etc for the tribunal.

You may get a special school nursery place which will most likely use TEACCH methods, PECS, Makaton but these are rarely available to more mild children.

My DS has moderate (although on some scores severe) autism but normal IQ. We were successful as we could demonstrate good progress while the Local Authority nursery was not getting any progress. The problem with milder cases in the UK is that the child will probably show progress in any setting and the LA will then decide that it is an appropriate level of progress. Frankly UK services set the bar so low that any progress is deemed appropriate. So you have to prove ABA works much better than the cheaper alternative.

The law says that LA's are responsible for a child's SEN from birth and stronger duties kick in at age 2 (see SEN Code of Practice), so you do not have to wait until 3 to apply for support. The most likely support to a child out of nursery will be portage (play therapy) probably a max of 2 hours per week and perhaps SALT every few weeks. Once you put your child in a mainstream nursery you may get some untrained 1:1 time but probably lose portage and any direct SALT as the SALT and Autism Outreach staff will then provide advice to the nursery but in most areas not work directly with the child.

I would look to see if your US health insurance will cover you abroad. If not you need to expect to fund all therapy yourself for at least a year. My understanding is that ABA fees are usually cheaper in the UK - but to an extent that will reflect it is less established and expertise may be less than you would find in the big US centres.

I actually believe that the NHS should have a role, this is a condition that is defined by the ICD-10 and diagnosed by medical professionals, I can see no reason why there should not be evidence-based best-practice treatment available from the health service, as there is for other conditions. But that has not been the way it works to now...and I can't see it changing. It is entirely wrong though.

Dude, it does have a role albeit not a clearly defined one.
If you are working with NHS professionals who specialise in ABA then you are receiving behaviourally based intervention from an NHS professional.

I should know, being one of them.

Okay, I will concede that LEAs can fund ABA programs for children under the age of three. I believe they SHOULD. Besides the ethical issues, it would save them a lot of money in the long run.

However, most LEAs I am aware of do not go out of their way to be agreeable to ABA programs for children under the age of 3. Especially if the diagnosis is "mild." To access any kind of ABA funding for a 2.5 year old, the parents will need to go to tribunal. I do not know of any LEA that will provide 30+ hours of EIBI as a matter of course for a child under the age of 4. I would LOVE to be proven wrong in this. Please do tell me if I am wrong. Maybe my experience in the UK isn't typical.

If a parent has access to ABA in the states and the child has mild autism, I bet that child is making a lot of really great progress. If this was my child, I would not want a substantial delay in treatment. The data are very clear that intensive intervention is important in the early years (The Early Start Denver Model data are so encouraging!). If the OP were to move to the UK, she will most likely need to self fund a program to avoid treatment delays. She will then need to deal with a tribunal, in a foreign country in order to access LEA funding.

I have been very harsh in my answer because in my experience, people in the USA can't believe how far behind the UK is in establishing ABA as a standard treatment. Their assumption is that the children will receive the same standard of care, and IME, that isn't the case. The standard of EIBI in America is often fantastic, especially when insurance is funding it.

I have seen the NHS refuse to accept a diagnosis of autism from abroad and insist on re-diagnosing. This can take months. This may not be standard procedure and only happen in my quirky neck of the woods. The definition of mild autism in the US may very well differ from mild autism in the UK. In the US, the rate of diagnosis of autism for children without a severe learning disability has increased almost 80% in the past 10 years. We have not seen a similar increase in the UK (at least in my patch). A child that young with mild autism may very well be diagnosed with "global developmental delay" in the UK because "it is just too soon to know."

My advice remains the same. I would consider delaying a move by a year or two.

I take moondog's point that some people in the NHS do provide behavioural based service. In my experience, these people are fantastic and they have taken to ABA of their own accord. EIBI (and this is what we're talking about here) is not a standard treatment offered by the NHS (but again, it should be).

Okay, I can think of examples of school based EIBI programs funded by the LEA such as Treetops. Maybe the situation isn't as bleak as I think it is. But, these programs really kick into gear in reception year (age 4).

Just to say that my ds was receiving LEA funding for his ABA home programme at 2.5yrs, without getting anywhere near tribunal.

And I know several children in this borough who have had funding before the age of 3, again without tribunal. So it is possible, depending on where you live.

DS is not 'mild' though. And I certainly agree that the UK is way, way behind the US in regards to ABA provision!

LAs don't find 'mild' in those places though as little kids can be ignored for free in the early years foundation stage settings where no demands are ever made of them and they are free to stim on the periphery whilst 'professionals' interpret this as child initiated play.