The story so far: DLA and Carer’s Allowance

If your child qualified for high rate DLA and you qualify for Carer’s Allowance, this could add up to a total of £87.65 + £66.15 = £153.80 per week. Compare this to your potential autism therapy / ABA costs of £300 or more per week and you’re only about halfway there. BUT you’re halfway there! Which is a big help. 

What else is out there?
  • Child Tax Credits & Universal Credit
  • Income support 
  • Housing Benefit
  • Council tax rebates / rates rebates
  • Charity grants
  • Crowdfunding
Child Tax Credits & Universal Credit

Child Tax Credits don’t really exist any more; the only people who can make a new application for Child Tax Credit is someone who receives severe disability benefit. This applies to people who are disabled, therefore you cannot apply on behalf of your autistic child; it applies only to the diabled adult.

Child Tax Credits have been replaced by Universal Credit

You may be able to get Universal Credit if:

  • you’re on a low income or out of work
  • you’re 18 or over (there are some exceptions if you’re 16 to 17)
  • you’re under State Pension age (or your partner is)
  • you and your partner have £16,000 or less in savings between you
  • you live in the UK

Your Universal Credit payment is made up of a standard allowance and any extra amounts that apply to you, for example if you:

  • have children
  • have a disability or health condition which prevents you from working
  • need help paying your rent

Use a benefits calculator to see how much you could get.

Income support 

Income Support is a means tested benefit that can be paid to people who have a low income and meet certain criteria. Carers and lone parents of children aged under five can claim Income Support if their income and savings are low enough. To claim Income Support call 0800 0556688, or in Northern Ireland contact your local social security office.

For more details, see www.gov.uk/income-support

Housing Benefit

If you pay rent and have a low income and savings of under £16,000, you may be entitled to claim Housing Benefit. If you have a very low income you may get all their rent paid. Some people who are working or have some savings get a contribution towards rent payments.

Housing Benefit and Council Tax are administered by your local authority and by the Housing Executive and Land & Property Services in Northern Ireland.

Council tax rebates / rates rebates

There are numerous different schemes that can reduce your Council tax bill. Council Tax Support is a means tested reduction of your bill. Council Tax discounts are reductions that are not means tested; the amount of the discount will be affected by how many people live there. The Disability Reduction scheme can reduce the bill where the home has been adapted for a disabled person.

In Northern Ireland you can get means tested help to pay your rates, and it is also possible to qualify for a non means tested disability reduction for adapted properties. So for example, we adapted a bedroom to be used as a mini-classroom / therapy room for ABA therapy sessions. A council assessor came out, had a look, made some notes and we got a reduction in our rates bill. Qualifying for reduced rates may also entitle you to discounts for a number of other things such as adult-education courses at local colleges, so whatever the rate reduction, it is worth applying if you qualify. 

Charity grants

There are some charities in the UK that provide grants to help cover the cost of autism therapies such as ABA, but, sadly, most of the major ones do not. Most charities focus their donations towards items rather than therapies. Organisations such as:

  • Cauldwell Children They DO offer help with diagnosis and assessment, they run workshops for adults and for children so they are helping autism families. BUT they do not fund ABA or other therapy programmes.

They support some therapies for motor function such as for children with cerebral palsy. They used to provide funding for ABA; I know this as I was a very grateful recipient of a Cauldwell grant several years ago during Nick’s therapy programme. But clearly someone exploited the system or made fraudulent claims, or perhaps they were simply overwhelmed with applications. Whatever the reason, they no longer support entire therapy programmes. 

  • Family Fund: they offer grants towards specific items rather than therapy programmes.
  • Variety Children’s Charity: they offer funding for equipment which can help a disabled child as well as family trips and respite, but no therapy funding. 
  • Merlin’s Magic Wand: they provide days out to theme parks for children and families. 
  • The Boporan Charitable Trust: they offer funding for equipment which can help a disabled child as well as family trips and respite, but no therapy funding. 

So if you think your autistic child could benefit from having access to an iPad to help him keep calm when travelling, you can apply for that. Also, individual events or trips as respite for the child or for the family are quite well supported. But therapies such as ABA are generally not mentioned on approved lists of items, or are specifically not funded. 

Even the National Autistic Society (NAS) does not seem to offer therapy programmes, on a national level; there is support through workshops on social skills or advice and guidance for parents and it seems that ABA-style programmes are supported, but it seems to be on an ad-hoc basis depending on where you live. It may be that the charity are reluctant to be seen to very-publicly support any one therapeutic approach, or it may be that they fear the cost of trying to financially underwrite expensive therapy programmes for every autistic child in the UK. Both of these are fair reasons but they do not make the situation more palatable for those families looking for help. 

To their absolute credit, the NAS have created and run a number of Autism units in mainstream schools. Their National Autistic Society’s Cullum Centres offer autism-specific education and smaller class sizes, to supplement the mainstream education being received by ASD pupils at the school. Their stated vision is to roll these centres out across the UK, but currently all 4 of these Cullum Centres are located in Surrey. 

Pro-ABA charities

So, very few charities in the UK offer funding for ABA or similar autism therapy programmes. There are a number of notable exceptions, such as * The Fred Foundation,* which is a charitable foundation set up specifically to provide funding for ABA programmes to help autistic children overcome social and communication difficulties. It is a registered charity (see here) but with only £25k in turnover in 2017, it seems unlikely that any major autism therapy programme, even for one child, could be supported by this charity.  *Also, I cannot access the website using Chrome or Internet Explorer, so I suspect the site has been withdrawn*. 

The charity Autism Aware is another commendable initiative to provide support for autism families. Started by parents whose sons are autistic, they are working selflessly to help others which is inspirational. Regrettably, they lack the infrastructure and scale to help all who apply (by their own admission), and their budget is in the region of £10,000 to £20,000 annually, which limits their ability to help on the scale they would like. Investigate further at http://www.autismaware.co.uk

Crowdfunding

According to thinktank NESTA, this is an area of great opportunity for charitable causes. Sites like JustGiving.com, Indiegogo and GoFundMe provide the infrastructure to promote your good cause (in this case, autism therapy such as ABA for your child) to attract financial support from family, friends and others who are sympathetic to your circumstances. 

You will need to check the conditions for each crowdfunding platform; some have attracted negative publicity for inadvertently hosting fraudulent campaigns and have changed their criteria so that only registered charities can use their sites. The biggest advantages of raising funds through a registered charity are that (a) you can access potentially a large amount of money and (b) you can benefit from Gift Aid, so that the government can contribute a tax rebate of 20% on any donations from registered UK taxpayers. 

However, as already mentioned, very few charities in the UK will fund autism therapy programmes, and the administrative burden of setting up and running a charity are likely to be overwhelming for all but the most driven individuals. Gift Aid cannot be claimed on crowdfunded donations which is unfortunate, but at least you can try to raise funds for your (very worthy) cause without having to go to all the hassle of setting up a charity.

We crowdfunded without a dedicated platform (none were available for this sort of campaign in 2010), simply by setting up a business account, a PayPal account linked to it and promoting it via a website/blog, Facebook and Twitter. Myself and 8 work colleagues did a sponsored run (a lap of Northern Ireland, run as a relay over 4 days, a distance of just over 400 miles). The response we got was amazing; we raised just over £20,000 which allowed us to keep going with Nick’s ABA therapy programme. It only covered about one third of the total cost of the programme, but it was a massive help and made the difference between effective intervention and token assistance. His life now and his options in the future have been transformed as a result and we will always be grateful for the generosity of all who so generously contributed. 

4 tips for those considering crowdfunding ABA
  • Do your research: what are the terms and conditions of each crowdfunding platform? Will is allowed and not allowed? What are their fees?
  • Set up a separate bank account: this promotes financial transparency and actually simplifies administration. Most banks will offer a business account without fees for the first 2 years of trading, so shop around and see who can help.
  • Tell your story: personalise your backstory to a level which you are comfortable with. You may need to get advice on this, as there may be child protection concerns if you give too many details out online (eg the name of your child’s school or your address). You need to balance the requirement to inform and persuade potential supporters to donate with your need for data protection. When we did it, we omitted our surnames and avoided any pictures of or references to Nick’s school, or our home address.
  • Update donors often: it is reassuring for donors and inspiring for them to see what benefit your child is getting from their generosity. I replied personally to every donor; some friends found that cringeworthy, but I thought it important to let each person know how much it meant to me and all of my family. If this is undesirable or impractical, post updates on treatment or progress being made via email, blog or your choice of social media. This also avoids fear about misallocation of funds, as an information vacuum can easily lead to unhelpful rumours starting and spreading. 

Next: Autism and Diet