Starting an autism therapy programme in the UK

Once you have decided to try a therapy programme for your autistic child, the next question is: who is going to pay? Will the state pay or will I have to foot the bill? With post-2008 recession hangover still casting a shadow over public sector finances, state funding for anything and everything is still cut to the bone.

How much does an ABA autism therapy programme cost?

Whoever is paying for it, the answer is: a lot.

How much does ABA cost?

Think about the maths of it:

Even if you pay your therapist as a self-employed contractor and so avoid all the complications of national minimum wage legislation, national insurance contributions, sick pay, maternity leave, paternity leave, H&S compliance*, PAYE and so on, you are going to have to pay an hourly rate of probably £10 – £20, dependent on the experience of the therapist and where you live in the country.

£10 to £20 per hour x 20 hours = Between £200 and £400 per week. YES; PER WEEK.

Obviously if that gets pushed up to 30 or 40 hours per week, you could be facing a weekly bill for therapy for anywhere between £300 and £800 per week.

Our monthly therapy costs when Nick was in the early stages of his ABA programme often exceeded £1,600 per month, which is unsustainable for the vast majority of families. It was for us. We started the therapy programme because we were so grateful to get any help at all and were desperate to get started. But after a month it dawned on us that between all the hours worked by therapists (Nick had 4 different therapists all working between 6 and 10 hours a week with him at various times) and supervisor visits (which were charged at a much higher hourly rate) we were spending 70% of our take home pay on ABA therapy.

Government funding for ABA?

One of the motives for creating this website is the lack of funding available for autism therapy. Autism has for so long fallen between 2 stools; it was not classified as a medical condition so health trusts did not provide funding. So then it became an educational issue. State provision for young children aged 2 to 4 years has traditionally been focused on general childcare, not any educational requirement or therapy. Under the Childcare Act 2006 (became law in 2008), the government set learning and development targets for all childcare providers in England who look after children under the age of 5. The Early Years Foundation Stage (EYFS) requirements are that all children under the age of 5 who are in any childcare facility must meet compulsory educational targets in the child development areas of:

  • communication and language,
  • physical development and
  • personal, social and emotional development.

It is not without controversy. There is much opposition to educational targets for children so young, especially in light of successful educational models internationally, such as in Scandinavia, which have no formal educational targets for children before the age of 7. There are active campaigns against such initiatives such as OpenEYE and Save Steiner Schools. However, as a parent of an autistic child trying to get funding for an ABA programme, this legislation might be of great help. It specifically targets all 3 areas which autistic children may have problems in. The case for your seeking an early intervention therapy programme for your autistic child has been made for you by government legislation, so that is an excellent boost. Of course, it is not quite that simple.

In England, councils have responsibility for most aspects of public services, including funding for education and healthcare. So, how the EYFS guidelines are applied and how much funding is available for them, depends very much on where you live and what your local authority stance is on early years education.

There are a total of 343 councils in England, made up of:

  • Metropolitan districts (36)
  • London boroughs (32) plus the City of London
  • Unitary authorities (55) plus the Isles of Scilly
  • County councils (26)
  • District councils (192)

(Click here for links to all of these councils & local authorities)

So you will need to figure out which council is responsible for your local area, then find out if they offer any kind of ABA (or similar) provision, or are willing to fund such support.

ABA funding in Wales?

In Wales, under the Foundation Phase framework for 3 -7 years olds, there is a specific “Learning with Autism” programme which is designed to help raise awareness and understanding of autism and the challenges it creates. However, there is no mention of therapy or funding for it and indeed, the Integrated Autism Service which is designed to support autistic people and their families to improve access to services and improve quality of life, specifically provides no assistance for children or young people. So much for early intervention! On their website, there is a fairly comprehensive 129-page guide for parents “Autism: A Guide for Parents and Carers Following Diagnosis”. It is worrying that therapy options do not appear until page 88 of 129, and although the synopsis of therapy options is extremely wide, there is absolutely no help or guidance about how to access funding for these therapies. See extract below:

Please be aware that the interventions listed below may not all be available locally and you may have to pay to access them.
Examining existing research and findings for families for whom it has worked are probably the best ways to evaluate how effective an approach may be. Speak to other families who have tried the approach because, even if an approach has shown spectacular results, it may not be right for your child if you do not have the time and money to implement it in the same way. The families it has worked for may have plenty of money, large amounts of support from extended family and friends and live in an area where services are readily available. If these things don’t apply to you, then it’s possible that the approach won’t work either. Don’t despair, there is plenty you can do to help your child, even if you don’t plan on remortgaging your house to pay for therapies!
https://www.asdinfowales.co.uk/resource/Autism-English-download.pdf

The jaunty and condescending nature of the final sentence pretty much reflects the attitude of a lot of health trusts and council staff around the UK when asked about autism therapy. They scoff at the idea of spending in the region of £40,000 over 2 years on a therapy programme which helps an autistic child to learn to talk and interact with society, for life, but never question how many undiagnosed and untreated autistic people end up in either on benefits for life, as they are unable to work, and / or in the justice system. See the end of this article for further comment on this.  

ABA funding in Scotland?

In Scotland,the Early Years Framework (EYF) encouragingly states that one of its aims is to “provid(e) a supportive environment for children and the earliest possible identification of any additional support that may be required.” This augurs well for the potential of ABA therapy funding. Indeed, the term “ early intervention” is mentioned in the executive summary of the EYF document. But the bright outlook is soon overcast as financial reality kicks in. In the “Resources” page, it states that “We recognise that these are high ambitions at a time when there will be no new money available for implementation”.  This statement, combined with the number of private ABA providers which pop up when you search the internet for “ABA autism therapy funding Scotland” would indicate that funding for early intervention autism therapy is not extensive. There is health service help for pre-schoolers in the form of speech therapy and occupational therapy services; there are also some specialist nurseries and peripatetic special-needs teachers who provide support. Realistically, funding for this is highly unlikely to match the needs of an autistic child. The intensive early intervention approach which is generally accepted for an ABA programme generally translates to over 20 hours per week. Our experience was that we were offered 30 minutes of speech therapy every 5 weeks; 5 weeks of ABA therapy would have equated to 100 hours of direct intervention for every 0.5 hours of specialist speech therapy. Factor in occasional cancellations due to staff illness etc and that could translate to a speech therapy – ABA therapy ratio of 1:400. So local authorities will often state that autism help is available, but how much and its efficacy is the more thorny issue.

ABA funding in Northern Ireland?

In Northern Ireland, the EYFS legislation is mirrored by the Getting Ready to Learn initiative. This provides some help for parents who want support with all aspects of child development from reading to healthy eating. However, help is financially capped at £550 per “setting” (weird term for person / case), so it is highly unlikely to have a significant impact in helping provide ABA or similar therapy.    

A universal challenge

Wherever you live, I would advise you to check out the excellent website childautism.org.uk (formerly PEACH). It has an abundance of practical advice and resources for any parent of an autistic child; a snapshot* of the content contained therein is in the table below:

If you want funding for your ABA programme this may be obtained by getting an EHC Plan (Education, Health and Care Plan; formerly a Statement of Special Educational Needs) for your child from your Local Authority.An overview of the EHC Plan process can be found on the Department of Education website. Details of the process are in the Department of Education SEND Code of Practice. The charity ACE (Advisory Centre for Education) is also a useful source of advice and information.Parents who are going through the EHC Plan process can call our helpline on 01344 882248 for specific advice about how to argue for ABA in the final draft of the plan.Child Autism UK has a list of solicitors and educational psychologists that specialise in ABA cases.  These lists are available from our office or by logging into the members’ area.The EHC Plan process can be very stressful for parents.  Our top five tips are:Familiarise yourself with the code of practice for special educational needs,  (Process is important).Keep contemporaneous notes of all telephone conversations with Local Authority officersAsk for the minutes of any meetings and ask for the minutes to be changed if you feel they are inaccurate. If they are not changed ask for a letter outlining your request to be filed with the minutes.Try and find a parent in your area who has successfully obtained funding for ABA and learn from their experience.Video your child at all stages so that you can demonstrate clearly the progress he or she has made. A video speaks louder than words.
Source: https://www.childautism.org.uk/funding-for-early-intervention/*Please note: I have no affiliation with the website or the charity. I am simply endorsing it as a parent of an autistic child who found value in it. All copyright is retained by the charity.

Charity support for ABA

You can also try individual charities which fund ABA therapy programmes; many of them are listed and links provided, here.

Funding for autism therapy: the long-term view

Simon Baron-Cohen, respected autism researcher from Cambridge University, co-authored an article analysing a study into “The cost-effectiveness of supported employment for adults with autism in the United Kingdom”. Although the purpose of the article is to point out the effectiveness of offering supported employment for autistic adults versus excusing them from the workforce, and allowing them simply to live off benefits, the study throws up some compelling financial statistics which highlight the lifetime costs of not offering some form of effective speech and communication therapy to autistic children. Overall it was found that individual placement and support (IPS) programmes delivered more cost savings than personal social services (PSS).

Although the initial costs of such schemes are higher than standard care, these reduce over time, and ultimately supported employment results not only in individual gains in social integration and well-being but also in reductions of the economic burden to health and social services, the Exchequer and the wider society. “

I agree. Who else can help me to access support for my child?

Beyond the charities listed earlier, you might want to investigate the campaign ABA Access4All which began as a parent crowd-funding initiative in late 2013, with 200 parents chipping in £10 each towards a legal opinion on whether the UK’s failure to provide their autistic children with ABA, an evidence-based therapy, might be judicially reviewable.

You might also seek support from the Children’s Law Society in your area, as there are ongoing issues nationally with support for children with special educational needs such as autism.

So what now?

Your action plan could look something like this:

  1. Do we want to pursue an autism therapy programme for our child?
  2. If ‘yes’, which type of therapy?
  3. Who is our local authority?
  4. Is this type of therapy provided by our local authority?
  5. If no, is it funded by our local authority?
  6. Who are the providers of that therapy service?
  7. How do they rate amongst their client families? If they have no client families or cannot provide details of these endorsements for you to follow up on and consider, steer clear.
  8. Follow the Child Autism checklist listed above, once you have decided on the details.

Good luck.

NEXT: DLA and autism