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Financial assistance

There are no two ways about it: autism is expensive. It costs, on average, three times as much money to raise a child with a serious disability than it does to raise a non-disabled one.

There are no two ways about it: autism is expensive. It costs, on average, three times as much money to raise a child with a serious disability as it does to raise a non-disabled one. And autism, while it isn’t always severely disabling, can make major inroads into the whole family’s quality of life, especially when the child is very young.

Autism can often be one of those issues you really need to throw money at, be it for travel, physical equipment, proper childcare or extra teaching. Most parents with an autistic child can testify that the level of need is high and the level of flexibility is low, and money can be vital to keep things manageable.

Unfortunately, autism also an issue that often affects your ability to earn money. Only 11% of parents with autistic children are able to work full-time, and 70% of parents say that they don’t have enough support to be able to work as much as they need to.

You may be lucky enough to have a high-paying job or savings to fall back on, but there’s a fair chance that most families of a child with autism will be feeling pretty broke.

That being the case, it’s time to look at ways to get financial support. There are a variety of options, and it’s worth looking into all of them. Being a carer is hard work and you deserve all the help you can get. None of the options are lavish, but they can make the difference between manageable and impossible, so bone up on your rights and apply for everything you can. You’re earning every penny of it.

You might be eligible for…

Child Tax Credits

Anyone with a dependent child can apply for Child Tax Credit, whether that child has a disability or not. The only requirements are that the child is under 16 and that he or she normally lives with you.

Points to know about Child Tax Credit

  • If you have a child with a disability and who’s receiving some Disability Living Allowance (see below), you get it at a higher rate. That rate is even higher if the child’s DLA is the maximum rate.
  • You can claim it whether or not you’re working.
  • It is means tested – in other words, the amount you can claim depends on how much money you have.
  • If you’re already claiming Child Benefit, Child Tax Credit is paid on top.
  • It’s calculated at a basic family element, plus an additional amount for each child you have. (The basic element is higher if you have a child under one.)

How do I check if I’m eligible?

The GOV.UK website has a questionnaire to help you work out whether you are eligible.

How do I claim it?

You need to fill out a Form TC600 for Child Tax Credit and Working Tax Credit. You can request one of these by calling the HMRC Tax Credit Helpline: 0845 300 3900.

Carer’s Allowance

Carer’s Allowance is a weekly payment for those looking after someone sick or disabled – which includes parents of children with autism.

How do I check if I’m eligible?

You’re eligible if:

  • Your child gets the middle or highest rate of DLA
  • You care for him or her at least 35 hours a week
  • You aren’t in full-time education
  • Your earnings from any work you do are no more than £100 a week after tax.

Important things to note

  • Having savings does NOT disqualify 
  • The allowance is taxable.
  • It might affect your other benefits. Check the GOV.UK website for more details.

How do I claim it?

There are two ways to apply:

  • Via the GOV.UK website
  • By calling 0800 882 200 – that’s the Benefits Enquiry Line – and ask for a printed form.

Carer’s Credit

Carer’s Credit is a National Insurance credit that was introduced on 6 April 2010. The basic principle is that being a carer can eat into your earning time, which may affect your ability to pay towards your state pension.

However, the Government recognises that caring is work, and so the Carer’s Credit can serve as an alternative to making National Insurance payments. This means that you can keep building towards your State Pension (either the basic or the additional) without getting any gaps in your record.

How do I check if I’m eligible?

  • Your child must be over 12. If he or she is younger, there’s no need to apply as your National Insurance credits will already cover things.
  • You shouldn’t receive Carer’s Allowance. Again, if you do, you don’t need to apply for Carer’s Credit as National Insurance will already be giving you the credits.
  • You must care for at least one disabled person for at least 20 hours a week. (That’s 20 hours total, not 20 hours per person.)
  • Each person you care for must receive:
    • The DLA care component at the middle or highest rate, OR
    • Attendance Allowance – any rate, OR
    • Constant Attendance Allowance – any rate
  • If the person you care for doesn’t receive any of these, you may still be eligible if you can show a Care Certificate signed by a health or social care professional (HSCP) – for instance, a GP or social worker.

How do I claim it?

You can find an application pack on the GOV.UK website.

Direct Payments

Ordinarily, care and services are organised by the local council. In some circumstances, however, you may be able to claim direct payments so you can oragnise them for yourself.

How do I check if I’m eligible?

  • You need to be a carer aged 16 or over
  • You should be applying for something specific that will give your child stimulation, a new experience, or a greater degree of independence. Examples include:
    • Short breaks
    • A place in a nursery that can give your son or daughter specialist support
    • Help with an activity, for example going to a youth club
    • Personal care 

How do I claim it?

Again, the GOV.UK website is the place to start. 

Your son or daughter may be eligible for…

Disability Living Allowance or Personal Independence Payment

These two benefits are basically two sides of the same coin: they’re a tax-free allowance for people with disabilities. The major difference is that DLA is for people under 16 and PIP is for people from 16-64.

Something important to know about both of these: a lot of people who are entitled to DLA or PIP don’t claim because they don’t realise they’re entitled or don’t think that things are that bad.

Actually, it’s a really good idea to claim them if you possibly can. Your child’s disabilities don’t have to be severe for them to be eligible, and far from cutting into other benefits, it might actually increase the amount you can claim.

Being registered for DLA or PIP, as well as being a way of getting some useful extra money, is a way of demonstrating that the system recognises your son or daughter as someone who has the right to support.

If your child is young at the moment, it’s a good idea to get registered for DLA even if it seems a bit like overkill. If he or she grows up to have problems supporting him or herself, a history of getting DLA can make it easier for him or her claim other benefits he or she might need. In other words, it can be the beginnings of a valuable paper trail, which is well worth trying for.

Disability Living Allowance

DLA is paid for the child, but to the parent or carer, as the child is too young to handle his or her own money. It isn’t usually audited but it can be a convenient idea to have a separate bank account specifically for such payments: DLA in, extra expenses for the child out. That way, if you ever are called upon to account for how the money was spent (including if your son or daughter wants to know when he or she is older), it saves headaches with the paperwork.

How do I check if my son/daughter is eligible?

DLA isn’t means tested; its basic requirements are that the child be disabled, a UK resident and under 16. You can find full details on the GOV.UK website

How do we claim it?

By filling in the relevant form on the GOV.UK website

Be warned: it’s a pretty hefty form to handle, so if you’re form-phobic, you may feel better getting some help. We have some general recommendations at the bottom of the page, but some good specific places to try are:

• Contact a Family's section on DLA
• The National Autistic Society guidance on claiming DLA

Both of these groups are used to helping families through the process and can be very supportive. 

Personal Independence Payment (PIP)

PIP is a weekly allowance to help with extra costs for anyone between 16 and 64 who’s living with long-term ill-health or disability. If your son or daughter is over 16 he or she may be able to apply without help, but if help is needed, chances are that you’ll be involved.

How do we check if he/she is eligible?

You can check out the GOV.UK form here

How does he/she claim it?

The GOV.UK website has a useful step-by-step guide, including the people you’ll need to contact.

You may also want to look at these charities…

The Family Fund - For low-income families with disabled or seriously ill children, The Family Fund can provide a grant. The sorts of situations they cover typically include buying essential items such as washing machines, fridges or clothes, but they also consider things like sensory toys, computers and family breaks.

Turn2us are about helping you find sources of financial support, be that help with applying for benefits, grants, or other sources, and they cover a lot more than the basics we’ve covered on this page. 

I need help with the forms!

Carers are usually tired and stressed enough already (especially if you’re worried about money), and juggling forms is hardly anyone’s idea of a jolly holiday. Fortunately, there are organisations that understand this, so if you feel the need for advice from people who know the system, here are some places to try.

Citizens Advice Bureau have trained volunteers and offer free, independent and confidential advice.

Contact A Family are a charity dedicated to supporting families with disabled children; one of the areas they cover is advice on the benefits and tax credits you’re entitled to.

Disability Benefits Centre. If you've already made a claim for DLA, PIP or Attendance Allowance, the helpline can give you advice and information on how it’s going and what to do next.

Be kind to yourself

Sometimes it can be hard to get started. Means-tested benefits mean combing through your finances, which can be exhausting, and almost nobody likes dealing with forms and bureaucracy. 

There may be an emotional issue as well. Many of us were raised with the idea that claiming benefits or ‘taking charity’ is akin to giving up. Some parents can feel that getting financial support is something to be embarrassed about, as if you’re not being a good citizen or a good parent.

It’s better to think of it this way: caring for a child with autism is skilled and demanding work as well as a labour of love.

Think how much it would cost to train a teacher or social worker to have the expertise you’ve picked up just by being your son or daughter’s parent. Would you trust a stranger to understand his or her needs? Probably not, because it takes a specialist. That’s what you are now: a specialist.

Skilled and demanding work deserves recognition – because after all, if you didn’t do it, they’d certainly have to pay a professional an awful lot more. If this is what you’re doing instead of ‘working’ … then you’re working. With a child you love, of course, but who says that people can’t love their work?

Working out the system is often a headache, so take advantage of whatever help and advice you can, and claim whatever you’re entitled to. Money for your child is money they deserve, and any payment to help you is the state getting a massive bargain.

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