What does DLA mean to you? Collecting testimonies for MPs' select committee

[ThisIsANiceCage]

The Work and Pensions select committee is examining proposed changes to Disability Living Allowance, and its rebranding as PIP and associated cuts.

With Mumsnet's permission, I've submitted a collection of your personal DLA testimonies to the committee, taken from the threads
Stop the Abolition of DLA,
So now we've got headlines about disabilities lets talk about DLA and
So, DLA cuts. Why you should care and what you need to say to your MP?,
all testimonies given under nicknames, obviously.

They seem open to hear us, so if any more of you would like to submit testimonies about what DLA means to you and your family, please do so. If I understand correctly, they are particularly interested in what it is used for, what would happen if people didn't get it i.e. removal of passported benefits, carers allowance, income support etc

You can post on this thread and I will, with MN's permission, submit these and/or direct the select committee here.

Or you can write directly to:
the Chair, Dame Anne Begg MP, [email protected] (address as Dame Anne Begg)
cc the Clerk, [email protected]

WCA
The select committee is also interested in the migration of people from Incapacity Benefit to Employment and Support Allowance and whether the Work Capability Assessment is fit for purpose. I'll start a separate thread for WCA testimonies (but it's not an official MN campaign so not in this section): watch this space for a link.

OK, for me DLA:

~helps me get to my gp, consultant and physio appointments. I often can't drive due to medication side effects so it pays for taxis.

~Pays for me to go swimming/gentle gym workout. This is not about having a bit of fun exercising, it's about trying to slow down the disease which is killing off my lungs more and more, and I will try anything to do this. My specialist has told me to exercise where I can because it may slow down the scarring. It cannot be reversed, but occasionally can be slowed or even halted. I would gladly give up my DLA if exercise ever 'made me better'.

~means I can buy specialist bedding etc which helps me cope better with my condition

~means I don't worry so much about childcare when I am in hospital/too ill to get them from school etc

~the passport to a blue badge has meant that I can get out far more often on worse days, not worrying about not being able to get back to the car as it is too far to walk to etc, and feeling more confident about getting to places

~passport to Railcard means I can afford to travel more by train, see above as in not always able to drive, especially long distances.

~means I can pay for a carer if dh is away when I need one without worrying

~gas bill. If I don't have the heating on when it's cold I get very ill, very quickly.

~electricity bill. Things like the tumble dryer means no damp washing which is again a trigger for my condition. The dishwasher means I can get more rest. I sometimes have very few 'spoons' and washing up would be impossible for me a lot of days.

~prescription pre-payment. Yes even with a chronic degenerative illness I have to pray prescription charges

~it's a passport to higher WTC/CTC. Because I can't work, without it we would struggle greatly, dh earns a below average salary. I can't get IB because I haven't earned enough stamp recently despite teaching for years and then being a SAHM I am scared at the thought of how we would cope. Who on earth would employ someone who was off sick most weeks, and who would have little strength for any consistent work? It's so worrying. It's bad enough being so ill, but worrying about how we will manage in the future can worsen that. I'm so worried about many of the most vulnerable in our society. I am lucky, I rely so much on dh, but that is by no means always assured, we don't know what may happen. without him I and the dc would be up the proverbial creek.

~we also pay for a cleaner. I can't clean my house anymore. I can sometimes drag the hoover round the downstairs, just. But cleaning seems to make me ill. I know that DLA isn't meant for such things, but having it means we can do this, which in turn means the environment is better for me and I stay more well. I shouldn't have to justify this I guess (sigh), but see DLA as an enabling payment, something which means I can cope better with the disease, something that even means I might be able to improve. I would give anything to not need it, I really would. Does that make any sense?

There's much more, will have a think. HTH :)

DLA helps to offset the costs of -

Carer/Home help - this includes cleaning, shopping, help around the house, gardening, picking up prescriptions, washing, changing bed etc. none of which I am able to do. I live alone.

Transport costs - I cannot get around on my own without a car - this involves loan payments, maintenance, insurance etc. When I am unable to drive myself, which is often, I have to get a mini cab. I have to pay to get the Health Shuttle to and from hospital for appointments and treatments.

It is also a passport to a Blue Badge, which means I am actually able to go out occasionally, whether in my car or someone else's. Sadly, this is more often than not to the doctor's or hospital! Without it my life would be even more restricted, as I cannot walk any distance and need to be able to park close to where I need to be.

Paying for treatments such as osteopathy, chiropody, which I can't get through my GP and for diabetic shoes/insoles because of pain in feet.

Gas and Electricity - I am at home 24/7 so need the heating on, whereas most people can go out to work and don?t need it on. I also suffer a great deal of joint and muscle pain and hot baths are one of the few things that will ease the pain for a while, so I use more hot water. Also extra washing of sheets because of night sweats and bladder problem.

Medication - I am highly sensitive to a lot of medication and have allergic reactions. My GP struggles to find things I can cope with. One of the few things that I am able tolerate is herbal treatment which is not available on the NHS.

Gluten-free foods - needed because of allergy. I get basic bread and pasta on prescription, but anything else I have to buy myself. Non-dairy foods - allergy - not available on prescription & more expensive than mass produced dairy products. Also convenience food as I am too ill to cook properly.

Phone bills and broadband - can be high because it is often my only way of communicating with the world. As my GP says - 'the internet is your lifeline'.

Without it all these things would not be possible. Which one would you choose to remove from your life? I do not have anyone else I can rely on to 'bail me out', nor am I ever likely to have. I have no relationship and have not been able to have children. I am 56 years old and my illness has wrecked my life. DLA helps to make it just about bearable. Without it I really would feel 'what's the point?'

If I did not get DLA AND they move me from Incapacity Benefit to a lesser amount of ESA, which will be time limited, then I simply will not be able to exist. I am in a private rented property, if I can't pay the rent I will be homeless. The local Council Housing Waiting list is about 5 years.

Did any of my comments get used? I can provide multiple if you like

I forgot to add -

Helped me to buy a whole new set of clothes because I had to have steroid injections for agonising pain in my shoulders, and because of this I put on 2 stone in weight and couldn't get into any of my clothes, even shoes. :(

Glitterknickaz, I only found a couple of comments from you, on the Stop the Abolition of DLA thread at 20-Jan-11 18:27:54 and just after.

I'm sure I've seen other stuff from you and can't now find it, so please do copy and paste or write afresh into this thread.

21/1/11 00.20
Yes, poverty.
No food.
No heat.
No roof.

Without DLA we don't get carers. Without carers we don't get Income Support. Without Income support we don't get Housing Benefit or Council Tax Benefit.

So no money then.
No way of working.
Still three disabled kids.

Poverty. That is the correct definition.

20/1/11 15.36 DLA is also a 'passport' to additional help. In our case carers allowance, income support, housing and council tax benefit.

Without the bedrock of DLA we have no income. At all.

DLA is meant to go towards the additional costs of raising a disabled child. It doesn't begin to cover it.

My son (severely autistic, will need 24 hour care for the rest of his life) receives higher rate care and higher rate mobility. He needs the mobility (this often confuses people) portion because he often becomes impossible to move (you try moving a 12 year old who is refusing to move and with whom you cannot reason because he does not have language). He is awarded it under the 'severe mental impairment + challenging behaviour' definition. I am very concerned that we might lose this as he really needs to get out every day or becomes impossible and I really can't manage him on public transport alone - (1) he refuses to get off the bus and I can't move him and (2) he cannot wait and starts hitting himself etc hard enough to bruise. The mobility component is a lifeline.

In the last few years he has broken five windows with his head so we had to replace all the front windows of the house to prevent this, we have needed to put up extra high fencing to stop him escaping from the garden (we have a postage stamp of a garden, but the fencing we needed cost 2 grand). DLA has I suppose contributed small amounts to this. He is non-verbal but trying to speak. The NHS will not pay for SALT for him as his prognosis is too poor so we pay for it once every other week.

I have started my own business because there is no after school childcare for someone as complex/needy as my son in our city. My earning potential has been reduced dramatically.

And so on and so forth. It has over the years contributed to (rather than met the costs of) basic therapies, basic safety and lost earnings.

oh and the cost of bringing up a disabled child is on average three times that of a typical child (lots of surveys/studies out there), I can well believe it (have 2 NT kids as well). There are lots of figures about how having a disabled child increases your risk of poverty as well. DLA really should be protected.

Bumping.