Hands off my DLA or PIP - Disability related expenditure from @SENDveteran

 First an important disclaimer. I am not legally trained. I'm not an advocate. I'm not a professional writer either! I'm just a lowly parent with lots of lived experience spanning 20 years with 6 children and young people who have EHCPs. Anything I write is not legal advice. It's accurate to the best of my knowledge but I'm not a professional. I have volunteered to write a piece for Jess about once per week covering various SEND and Disability topics. I hope these are helpful to at least someone. However I recommend that anyone 'checks' anything that they are told routinely or read on the internet because it's good practice and this is especially true in SEND!

I will never intentionally lead you astray or misinform you and will only say things that I'm very sure are accurate. That said, I'm human! I will try to clearly distinguish my opinions and suggestions from what I know to be facts.

So to kick off I want you to play MC Hammer (if you are old enough to remember him) in your head. "you can't touch this'. Got that in your head? Good I shall begin.

I am hearing and seeing more and more lots of LA's, schools, social care and other related services casting a beady eye on DLA or PIP payments that parents or carers claim for their children or young people and wanting them to spend it on things that 'really' or 'usually' other services should be covering.

Your DLA or PIP for your child is to cover extra expenses that YOU (you being the operative word) incur related to your child's disability. If they are over 18 then clearly it's not you it's them!

Now often parents can't think up the kinds of things that they spend this money on, for a couple of reasons.

1. They are so used to the extra expenditure that they don't even consider it extra expenditure anymore when it is.

2. They are not running their lives like a business, anally keeping every receipt.

It is good practice to start thinking this way though. When your young person becomes an adult, if they get a social care package they may be expected to contribute towards their charges in certain circumstances. The council does a financial assessment and works out what you or they need to contribute.

Disabiliy Related Expenditure or DRE can be offset against this. Usually this does not apply to children, does not apply to young people aged under 25 with EHCPs either. Nor does it apply to disabled people whose only income is benefits but when a disability person starts a job it does start to apply. So it's a good habit to start thinking about DRE NOW!

This blog isn't about 'that' kind of DRE though it will help people in that situation but rather it's about people with children who get DLA or PIP where the LA (or someone) want you to spend that on something that they should provide.

Schools often try it 'can't you buy a laptop out of your DLA' etc etc.

It can put you on the back foot. So I'm going to give you now a list of things that are DRE so that you've got an answer if this happens to you.

To be clear, anything that educates or trains goes in Section F of the EHCP and the LA are duty bound to fund it once it's written there.

Social care is social obviously and Transport has it's own underpinning law.

The DFE have very strict rules on what schools can ask you to pay for and you can read those rules here: https://assets.publishing.service.gov.uk/.../Charging_for...

What follows is a brainstormy list of DRE. Not everything will apply to everyone.

Here goes:

Extra gas electric water. Check national averages for consumption. Divide those figures by the national average family (it's usually four people) and see how your bills compare. How much higher are your bills tthan the national average? That’s your DRE

Extra food costs. Check out what national debt line allow per person for food. How much higher are your food bills in reality and why? That’s your DRE or it could be!

Taxi costs are DRE for certain disabilities. I don't mean to school here, I mean otherwise.

Broadband for disabilities like social communication or for those with Mobility issues. To be fair you also need broadband to accept emails from all the people contacting you don't you!

Higher costs for clothes.

Washing detergents.

Having to use a tumble dryer.

Breakages due to disability. For example furniture for kids with behaviour issues

Higher maintenance and repair bills.

Ink cartridges and paper for all the bureaucracy you have to deal with. Perhaps buying a printer with a scanner to make your life easier and to speed up responses for your child.

Higher costs for bedding. Mattress protectors or even mattresses.

Higher costs for motivational rewards or things to keep kids busy say apps games et

Toiletries and cleaning materials. Special toothbrushes or toothpaste. I have to use Method because my kids can’t tolerate the smell of flash etc !

Black out blinds, Black out curtains.

Replacing carpets more often. Decorating more often. Air Freshners.

Incontinence products if your CCG make getting a budget seem like climbing Mount Everest

Petrol or transport costs to all the meetings!

Childcare for non disabled siblings to allow you attend.

Take aways when you’ve been at the meetings and now don’t have time to cook and are now also mentally drained by it all

Phone calls or a mobile phone

Mobile dongle for car journey

This list could go on and on. You might have your own examples you can easily think of.

Think DRE and get into a good habit of keeping receipts. You don't need to keep receipts for children.

You can take photos of them for speed and keep them on your phone in their own file. To be honest usually fuel costs wipe out a lot of DLA and PIP payments anyway.

What is a good idea is to work out your DFE now so that if anyone tries to take money out of your purse or wallet you can send it to them and put that to bed promptly.

That is of course if you would struggle if you lost this money of course. If you would not struggle and are happy to hand it over then of course this is not written for you.

I hope this is helpful.