'Heat, eat or ventilate – the impossible choice facing disabled people'

Tori_Scope

We're all being impacted by the cost of living crisis, but disabled people may be particularly badly affected. 

I know that this can be an upsetting topic to talk about, and that it's something we've been chatting about quite a lot on the community. Feel free to give this discussion a miss if you need to take a bit of a break, and chat about something more lighthearted in the coffee lounge  

Some of us face an even darker dilemma: heat, eat or ventilate. Yes, heat, eat or ventilate. We’ve long known that life costs more when you’re disabled. Disability demands specialist equipment, specialist clothes and/or food. Put “disabled” on a product, too, and you put about 200 per cent on the price. That’s not an exaggeration.

The charity Scope puts the extra costs grand total at £583 a month but that was calculated before the cost of living crisis got really nasty. It will have sharply increased since then. And the problems it causes are coming to a head.

We’re at the acute level of acute. Hence heat, eat or ventilate. Heat or eat is a truly horrible position to be in. People are going to freeze this winter because you can’t not eat. But what if the choice is heat, eat or ventilate?

Scope says it is already being “inundated” with calls from disabled people who have cut their household budgets, and then cut some more, and have nothing left for the scissors.

Disabled people are going into debt to pay for essentials like food right now. Their health is suffering. Feelings of isolation and anxiety are widespread. What is it going to be like in December? “We’ve also seen numerous safeguarding concerns, with callers feeling hopeless and suicidal,” Scope says. The charity is calling for a doubling of the support package and the potential of introducing a discounted energy tariff for disabled people.

(The Independent: Heat, eat or ventilate – the impossible choice facing disabled people)

Adrian, 41, a single father with two children, said: "Come winter I am panicking about the rising price of gas.

"I need to have my heating on all the time to keep him at a level where he doesn't get cold.

"He can't be cold - cold will flare up his condition."

Adrian said it was not just heating that his son needed.

He also has an electric bed with a mattress pump and hoist, a fan, a bubble tube and a television.

He said it was unlikely he would be able to afford his bills this year.

"If debt is the only way his health needs can be met, then debt it is.

"There's no other way about it," he said.

The government said disabled people would be given £150 from 20 September to help with the rising cost of living.

The charity Scope, said that "isn't going to touch the sides" with energy bills predicted to reach more than £4,000 a year by January.

(BBC: 'Keeping my disabled son warm will put me in debt')

Please note that the Adrian in the article above isn't 'our' Adrian  

Over to you...

Let us know how you've been affected by the cost of living crisis by completing the following forms:

• If you're the parent or carer of a disabled young person, tell us how the cost of living crisis has affected you and your family
• If you're not the parent or carer of a disabled young person, you can still have your say on the cost of living crisis

This will help to shape our work, and show the government what the cost of living crisis is like for disabled people. 

Please also share any additional thoughts in the comments below. 

• Do you think disabled people are being disproportionately affected by the cost of living crisis? 
• Are you worried about being able to afford the essentials this winter?
• Do you fear that you may get into debt, or are you in debt already?

leeCal

I think the disabled and the elderly who may also be disabled are going to be disproportionately affected by the cost of living crisis. They have extra needs after all which were inadequately catered for before the crisis. Even pensioners of sixty six years of age plus will be badly affected too, along with others who are on a low fixed income. 

Just today I've heard of someone who intends to partially supplement their simple diet with a nutritional shake, a poor substitute for real wholesome food not to mention the fact that it’s not a hot meal. 

The only sensible course of action I can see the government making is to freeze energy prices asap, before it’s too late.

Karen7788

I worry about those that don’t claim the benefits that they’re entitled to, these are the people that often fall through the net. There’s about £15 billion in benefits that go unclaimed every year in this country. 

We’ve already had a family discussion about the coming months and obviously those in the family that are able to will help those that will more than likely need extra help. 

It’s going to be a nightmare for many people this coming winter, we’ll all need to carry on looking out for each other.

racyguy

Karen7788 said:

I worry about those that don’t claim the benefits that they’re entitled to, these are the people that often fall through the net. There’s about £15 billion in benefits that go unclaimed every year in this country. 

Some refuse to engage with anything that has the government stamp on it, some don't know how or what to claim and some like myself just need the government to make suitable adjustments so that a claim can be made.
Fortunately I come from a generation that remembers real poverty and lack of heating as well as good food. So just think back to the winters of the 40's, 50's and 60's - we managed OK although it was hard at times. Being sent out with an old pram down to the railway line that ran into the town gas works to collect bits of coal by the side of the track. Having to eat potatoes that the skin had been dyed purple signifying that it was only for animal consumption.

racyguy

woodbine said:

It has always been the case that if you want the benefit you have to jump through the hoops, of course that doesn't include universal benefits.

And for those that find those 'hoops' far too challenging - what then?

racyguy

woodbine said:

racyguy said:

woodbine said:

It has always been the case that if you want the benefit you have to jump through the hoops, of course that doesn't include universal benefits.

And for those that find those 'hoops' far too challenging - what then?

For those who find it a struggle they should seek help, many examples of where that might be found, AgeUK, CAB, Welfare rights the list is long and all are up and running again now so no excuse really.

https://www.gov.uk/find-a-community-support-group-or-organisation

That link takes me to my local council that does not offer any welfare advice.
As for the rest of the list, have you actually tried to get hold of them? I have and it's impossible.
Then in my case I need help from someone that will see me, ideally at home, once a month to identify what the increases/decreases are in respect of all my various pensions and annuities that all have tax deducted from them. Then get the evidence together generally by writing to all of the companies asking for a relevant payslip, print off from my bank account showing the various sources and what was paid in then compile a letter enclosing all of that to the Pension Service.
No one is willing to do all of that work for me - AgeUK, CAB.

Suggestions please?

leeCal

Sounds to me as though you need the temporary services of a financial advisor. Excuse me if that’s impractical because they obviously charge a fee @racyguy.

racyguy

leeCal said:

Sounds to me as though you need the temporary services of a financial advisor. Excuse me if that’s impractical because they obviously charge a fee @racyguy.

Temporary? Yes monthly for as long as the Pension Credit award exists.
I can't afford fees. it's hard enough trying to keep everything paid at the moment.

racyguy

woodbine said:

I would agree that it might well pay you to employ an accountant, might not cost as much as you think and would mean you could claim PC and all the benefits that come with that, you never know you might end up getting the £38,000 a year you talked about on another thread??
Just to add the last time I had an accountant he saved me more than he charged me.
One final thought you mention Ageuk and Cab won't help have you tried welfare rights?

I have no idea how much they charge per hour. My last involvement with accountants was back in 1997 when the average charging rate was in excess of £200 an hour.
Then there is the issue of actually having a professional accountant looking after my finances - I wonder what the DWP/Pension Service would think if I told them to refer questions to them?
Still it's an idea worth following up although I don't hold out much hope.
As for Welfare Rights, I'm not too sure who you mean. If it's the council then they stopped all of that many years ago due to costs. In my area there are only AgeUK & CAB.

racyguy

woodbine said:

Just search for "welfare rights xxxx area" there are three In my area.

We had an accountant in the mid 90's he charged £200 per quarter.
My point being if an accountant got you the benefits you believe you should get they would pay for themselves.

Just to add welfare rights have an office attached to our local council, one attached to the county council and one to the neighbouring council, I have used them myself (during covid) and they were excellent

Two in my area according to the web - CAB & AgeUK
Both District and County used to have a Welfare Rights group. In fact I still have the WRO telephone number that I used in 1995. Rang the number - not available.
No seriously both councils no longer have any WRO for general public use. I say that because they do have two for the County but the only way of accessing them is if I was under the care of Social Services.
They disbanded their own public Welfare Rights years ago to save money believing that the CAB should be used instead - the District council used to give the CAB a grant to do the work, but that dried up back in 2019 because of budget cuts - they also cut the grant for the one and only sports centre with that now in poor financial position.

Karen7788

Money and Pensions Service Gov.uk. are maybe your best port of call @racyguy. I get the impression that having multiple pensions/annuities are complicating matters for you. 

It may be worth your while to contact the Gov.uk Money and Pensions Service, it’s free advice. 

racyguy

woodbine said:

It has never been my displeasure to meet anyone so negative, tried my best to help but no more, sorry

Negative? the only suggestion that you made was for me to employ an accountant.

racyguy

Karen7788 said:

Money and Pensions Service Gov.uk. are maybe your best port of call @racyguy. I get the impression that having multiple pensions/annuities are complicating matters for you. 

It may be worth your while to contact the Gov.uk Money and Pensions Service, it’s free advice. 

Many thanks, I will contact them in the morning they may well be able to offer a reasonable solution to my problem

racyguy

racyguy said:

Karen7788 said:

Money and Pensions Service Gov.uk. are maybe your best port of call @racyguy. I get the impression that having multiple pensions/annuities are complicating matters for you. 

It may be worth your while to contact the Gov.uk Money and Pensions Service, it’s free advice. 

Yes not only having multiple pensions and annuities but also the fact that each one is taxed at 20% which brings me into scope with how the tax system works.

Karen7788

@racyguy, I think you’re being a little unfair to @woodbine,  he has offered lots of advice, but everything seemed to be going round in circles. I understand that it can be frustrating but everyone is just trying to help, even talking about an issue can help. 

poppy123456

racyguy said:

woodbine said:

It has never been my displeasure to meet anyone so negative, tried my best to help but no more, sorry

Negative? the only suggestion that you made was for me to employ an accountant.

Several members have tried to help you across multiple different threads but each time a brick wall his hit. Fast forward a couple of weeks and the subject comes up again so someone else tries to help you but the wall is hit again. Round in circles we've gone for months.

racyguy

poppy123456 said:

racyguy said:

woodbine said:

It has never been my displeasure to meet anyone so negative, tried my best to help but no more, sorry

Negative? the only suggestion that you made was for me to employ an accountant.

Several members have tried to help you across multiple different threads but each time a brick wall his hit. Fast forward a couple of weeks and the subject comes up again so someone else tries to help you but the wall is hit again. Round in circles we've gone for months.

Let's be honest the brick wall that keeps being hit is because I am no further forward in finding the help I need to be able to make a Pension Credit claim and more importantly have it maintained for me.
The suggestion to get an accountant isn't really relevant on this site given the fact that we are all struggling to live never mind paying for a professional.
The one I am banking on is the Money & Pension Service that was mentioned by Karen. Just hoping that I get a breakthrough in the morning when I ring them.

durhamjaide2001

I would love to campaign for this 

Tori_Scope

It's great to hear that you'd like to get involved in campaigning for change @durhamjaide2001 In what kinds of ways would you like to get involved?

durhamjaide2001

Tori_Scope said:

It's great to hear that you'd like to get involved in campaigning for change @durhamjaide2001 In what kinds of ways would you like to get involved?

I would love to make little boxes up for people that are struggling and I think we should all get a top up off pip even though I don't pay energy bills. 

L_Volunteer

Those sound like wonderful ideas @durhamjaide2001. What would you like to put in your little boxes?