The penny drops podcast: Where to get financial help if you’re disabled

For people living with a disability, their condition can often affect them financially, as well as physically or mentally. While there’s support available for those that need it, with so many benefits and information out there, it can be confusing to work out what you might be entitled to and how to apply.

In this month’s episode we discuss how having a disability can impact someone financially and how to find the right support.

What will we be talking about?

  • Available disability-related financial support and benefits
  • Working out what you might be entitled to
  • How to get help filling out assessment forms and how to appeal a decision
  • Where to go if you’re having financial difficulty and you have a disability
  • Support available from employers
  • Vehicle and transport benefits and schemes
  • Housing and council tax support
  • Help for disabled students and retirees
  • The impact of Covid-19 on disability-related benefits

Who are our guests?

On this episode we’re joined by the MS Society’s Benefits Advisor, Bez Ely, and Head of Policy, Phillip Anderson. The MS Society is the UK's largest charity for people affected by multiple sclerosis. They fund world-leading research, share the latest information and campaign for everyone's rights.

All views and opinions expressed in the podcast are those of the guests and not of Royal London.

Where can you listen?

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If you don’t have access to an app, you can listen to the podcast online

Presenter
Welcome to The Penny Drops, the Royal London Podcast series simplifying finance to help more people, like you, make better informed money decisions. Royal London recommends you seek professional, independent financial advice before or making financial decisions. All views and opinions expressed are those of the guests and not of Royal London.

Andrea Fox
Hello, I'm Andrea Fox, a journalist, broadcaster, and the host of The Penny Drops, where I speak to some of the best financial experts out there. Now, this podcast was recorded during the coronavirus outbreak, so please excuse any sound issues as we are all recording remotely and for the latest information on financial support and benefits, visit gov.co.uk/coronavirus. Now, on this episode of The Penny Drops, we are discussing how having a disability can impact someone financially and what support is out there to assist them. So today I'm joined by Bez Illy. Hi there, Bez.

Bez Illy
Hiya.

Andrea Fox
Now, Bez joins us as a benefits adviser for the Disability Law Service, who also advises the M.S Society and Philip Anderson. Hello, Philip.

Philip Anderson
Hi. Great to be here.

Andrea Fox
Now, Philip is head of policy from the M.S Society. Thank you both for joining me. Firstly, what's some of the work that the M.S Society does to support those with multiple sclerosis.

Philip Anderson
Over 130,000 people live with M.S in the UK and Bez on our free M.S helpline is one of the people who can provide individual support for anyone who may be struggling. We've also got a project in Wales called the Pontio Project that offers more tailored information and support on employment rights and welfare benefits. And then last but far from least, as the M.S Society, we campaign for changes to make the benefit system better for everyone, including people with M.S, across a whole range of issues.

Andrea Fox
How can living with a disability such as M.S impact someone's life financially?

Philip Anderson
Well, M.S can be relentless, painful and disabling, and many people do face extra costs because of their condition. This includes things like having to pay for more travel because you have less mobility, higher utility bills because you're home more, or things like home adaptations and physio appointments, to help you manage M.S more directly. Research actually shows that living with a neurological condition like M.S can cost people an extra £200 a week, so that really, really adds up. Likewise, M.S can often affect your ability to work, and many people with M.S work part time or are unable to work at all. So that obviously means less financial stability and a reduced income. Unfortunately, the rates of the main welfare benefits like personal independence payments do not at all cover this gap or compensate for the extra cost and many people with M.S are living in poverty.

Andrea Fox
And that is - you mentioned the word benefits there; so can you talk us through what sort of disability related financial support is out there for people?

Bez Illy
Sure. Yeah. So, most people have heard of universal credit, which is the main means tested benefits that new benefit claimants can claim to help with living costs. So, bills, rents, having children, and then there's an extra sickness element as well, and childcare costs. And so obviously if you're disabled, then you would be likely to be looking to get the sickness element of universal credit. And then that means tested that's based on your income. So, they'll look at your partner's income as well and your savings, and that's the kind of earnings replacement benefit. And then there's Personal Independence Payment or Disability Living Allowance. Again, new claimants would be claiming Personal Independence Payment, and that is to kind of; for anyone that's not meant to that is just to recognise that because you have a health condition, a long-term health condition, your life is more expensive. So as Philip mentioned, you might have extra transport costs, you might be using taxis a lot, you might need to pay for a cleaner or carers, or you might need to buy special foods, but just generally your life is going to be a lot more expensive. So that's what Personal Independence Payment and Disability Living Allowance are.

Bez Illy
Therefore, there's also attendance allowance, which is the kind of equivalent for people over state pension age. And then there's also contributory benefits. So for people that, say, might not qualify for universal credit because of their savings or partners income, they might be able to claim something called New Style Employment and Support Allowance, if they've been working for the past three years before they had to stop. And if they've got a family member or friend that cares for them and they're getting Personal Independence Payment, then they might be able to get Carers Allowance.

Andrea Fox
So, there are some interesting ones to look out for. I think people might recognise Personal Independence Payment, which I think is sometimes called Pip, and Disability Living Allowance. The DLA there, but some other good ones for people who they may not, if they're in caring roles, not realise that they're able to get those. So, do you think there is enough information out there about what people might be entitled to?

Bez Illy
I mean, I think there is information out there. I mean, there's information on the gov.uk website and citizens advice, but there's just so many benefits that is quite difficult for people to know. And, you know, when people call me, a lot of them say they don't have a clue about benefits or they might have heard of universal credit, but quite a few people haven't heard of New Style Employment and Support Allowance. And by the time they find out about it, actually, they've been out of work for, say, two or three years and they don't have the National Insurance contributions to claim it. So, yeah, I think it would be always be good to have more information. I mean, the M.S Society website is very good and there's lots of booklets there as well. But I just think because, you know, there is quite a few benefits out there and it depends what your individual circumstances are as to what would fit you. It is just quite difficult to navigate. So, yeah, I think that's why the M.S benefit service is really useful to people.

Andrea Fox
And you mentioned the applying for benefits and knowing what's out there, but can you even get help filling out those assessment forms? And what happens if maybe you're turned down? Is there an appeals process at all?

Bez Illy
Yeah. So, if people call the helpline or email in, then I can talk through kind of the health condition with them and kind of key points to put down on the form and the best approach to go with the form. Also, services such as citizens advice can often give face to face help filling in a form if someone will find it difficult to do that. And then in terms of - and there's also very good fact sheets from the M.S Society and Citizens Advice as well on how to fill in a pip form that kind of go out in quite a lot of detail for each question, which is really helpful. And in terms of if people are unsuccessful, then it's a kind of a two-stage process. So, the first stage is called a mandatory reconsideration, which is where the DWP - Department of Work and Pensions - will look at their decision again. And then if they still don't change it, then that's when you could appeal to a tribunal. And I always advise people that both of those stages, if you can get very detailed medical evidence that shows how you fit the criteria, that is what is really helpful.

Bez Illy
And again, at claiming stage as well, because what they look at is your assessment form, your medical evidence, and your assessment, which might be by telephone, or it might be face to face, so look at all three of those and the more kind of bespoke medical evidence you've got, the more helpful it is to getting the right decision first time around.

Andrea Fox
Wow, I mean, Philip, does this happen quite a lot? Do you find that people are often having to go to tribunals to get the benefits that they need?

Philip Anderson
I mean, it certainly happens more than it should. And a kind of related problem is, actually there's a lot less, sort of, legal aids help than there used to be. So, actually kind of taking things all the way down the line, so to speak, to get what you're entitled to is a lot harder and unfortunately, we do hear of people that kind of give up because they're just so exhausted fighting the  system.

Andrea Fox
Well, we've talked about some of the benefits that are available out there, getting the information out, but another element I imagine, is figuring out what benefits people might be entitled to. So, is there an easy way to do that?

Bez Illy
As I say, it will depend on your individual situation. There is benefit calculators online, so there's the website turn to us with the number two, or if you just Google benefits calculators on the gov.uk website, there's a list of a few there. So that's more for means tested benefits like Universal Credit, Council tax support. But, then there's also the disability benefits such as personal independence payment and benefits such as carers allowance and employment and support allowance. So, you know, the service offered through the Disability Law Services in M.S Society, people can call and we can advise on what people might be entitled to that way or you can speak to Citizens Advice. But as I say, there are these online benefit calculators and there is information about each individual benefit online. So, if people kind of go through that, then hopefully that will help them work out what they're entitled to. But it can be tricky because Universal Credit is more looking at your finances, which might be, say, a bit simpler to work out yes or no. But say with pip - Personal Independence Payment -  it is very much about how your individual health condition affects your ability to do activities such as preparing a meal from - a cooked meal from fresh ingredients, or having a shower, or changing your clothes, or how far you can walk. And so it's not as simple as I've got this health condition, therefore I will get pip,

Bez Illy
it will really depend on how that individually impacts you. And again, that's how our service can be really helpful. And obviously places like Citizens Advice can help people with that.

Andrea Fox
Yeah, and we have spoken to turn to us on this podcast before, so we will link to that episode in the show notes as well. Where should people start if they're having financial difficulty and they have a disability? Like which organisation or support services would you recommend they start with? You've given us some great ones there, but is there a good starting point?

Bez Illy
I mean yeah. I work for the Disability Law Service and we have a very busy benefits helpline, but people are always very welcome to call. Also, local Citizens Advice offices are really good place to start. And, obviously, if people have got M.S, they can contact the M.S helpline and speak to us. And there are lots of other disability charities that have specific help lines for individual disabilities. So, yeah, it's helpful to have a look at those because, say, the M.S Society has got bespoke fact sheets and tailored to people with M.S and similarly, other organisations have designed similar fact sheets that would be helpful.

Andrea Fox
Okay. And thinking about employers, what sort of support is available for them to make sure that they are across what their employees’ rights are and that they're supporting them correctly?

Bez Illy
So, I do benefits, but my colleague at the Disability Law Service advises people with M.S on their employment rights, and again, the M.S Society has got a very good kind of overview fact sheet on rights that work. And then obviously there's ACAS, which people can call the helpline for to find out about their employment rights. So, yeah, that would be kind of my suggestions as the first port of call. If you look at the M.S Society fact sheet on working with M.S and all the different implications of what to tell your boss, if anything, and what reasonable adjustments you might be able to get and things like that.

Andrea Fox
Yeah, I'm bringing Philip in again. Do you think that in terms of employers, have things got better in terms of making sure that people with disabilities are getting looked after correctly at work and the right  rights, as it were, are in place for them.

Philip Anderson
Just in question, I think they've gotten better in some ways. I think awareness of reasonable adjustments is probably higher than it was, say, ten years ago. But as we've seen through the pandemic, a lot of the kind of legal rights that people have are very hard to access. Like, you have to go a long way down the line. You have to potentially jeopardise your career in order to take someone, an employer to court, for example. And so if you have a nice boss and you have a good employment culture, you're probably all right. But if you don't, it's really very hard to kind of redress those wrongs often, unfortunately.

Andrea Fox
And I suppose we mentioned COVID-19 it's already come up. So, let's delve into that then. Covid 19; has that impacted any of these benefits?

Philip Anderson
So, in March 2020, so right at the start of the pandemic, the government increased the standard rate of universal credit and working tax credits by about £20 a week. That was very welcome. But unfortunately, what it didn't do was apply that same emergency uplift to what we call legacy benefits. So, the older benefits that are gradually being replaced by universal credit, what that means is there's about 1.9 million disabled people being denied the emergency uplift, not because they're in a fundamentally different situation. In fact, sometimes they're in a worse situation, but simply because they're on an older benefit and by the government's own admission, would be worse off if they try to move over to universal credit. So, it's a really frustrating situation. The M.S Society is a prominent member of a campaigning coalition called the Disability Benefits Consortium, and we've been calling on the government to extend the 20 pound lifeline. Unfortunately, that hasn't happened yet, but the High Court is, actually, to decide whether it was lawful for the government not to give people on legacy benefits the same increase and we're expecting that decision in September, so we'll see then. But in our opinion, it was quite discriminatory to sort of separate people out in this way.

Andrea Fox
Right. So, and in September, we could see that some payments might go to these people if the ruling goes in your favour, is that correct?

Philip Anderson
Yeah, it's not automatic, but if the ruling goes in our favour, then you'd expect that the government would have to react to that, Absolutely.

Bez Illy
And there's a sort of change that's possibly been positive for people with M.S is the end of face-to-face assessments during lockdown, just for safety reasons. So, it can be difficult for disabled people to get home assessments when they can't travel to a face-to-face assessment centres. So having that telephone assessment has been quite helpful for some people, they found that a bit easier. And it looks like that might be something that is going to be offered to people in future more generally. So, I think there have been some sort of positive things like that.

Andrea Fox
It's interesting, isn't it? There are some things that we've had to do for this pandemic that, like you say, might actually be helpful, for certain people, to maintain those in the future as well. And what work are you doing with the Disability Benefits Consortium?

Philip Anderson
I mentioned a lot about the work that the Disability Benefits Consortium is doing around legacy benefits and this kind of fundamental unfairness where some people are getting an emergency uplift to help them through the pandemic and others aren't, despite very similar circumstances. I think the other big thing on the Disability Benefit Consortiums radar is the Health and Disability Green paper that the government's recently published. And this does start to get some ideas to help with some of the different areas that we've been talking about today. So, for example, more help for people that might struggle with an assessment to fill it out and making sure people get that; making reconsiderations easier and more straightforward. We are cautious about some of the proposals and some of the sort of longer term thinking around how benefits could be fundamentally reformed could be a good thing but could also very much not be. We'll be sending out questions to our community to help us with our response, but people can also complete the survey directly on the gov.uk website and the DWP are also planning on running events virtual and face to face to sort of hear from people directly and if people are interested, then there's more details again on the website.

Andrea Fox
Great. Yeah. And is there a time frame for people to get involved in having put in their thoughts forward for the Health and Disability Green paper?

Philip Anderson
Interesting question. The current deadline is mid October, the eleventh of October. However, we're actually asking the DWP for a bit more time because given the breadth of the consultation and the fact that it's over the summer, we do think that would be helpful.

Andrea Fox
Yeah. Okay. Good to know. Let's talk grants then. Are there ever grants available to help cover costs?

Bez Illy
So, you mentioned Turn2Us, and we've mentioned that earlier. So, that's a really good source of information generally to see if there's any grants available for people. It's a slightly sort of separate issue to benefits, but sometimes you can get things like if you have energy debt, sometimes your energy company might be able to give you a grant and then there's things there are specific energy grants for certain people on benefits.

Andrea Fox
And when it comes to things like tax credits, are there any other benefits in terms of tax credits that are available?

Bez Illy
So, tax credit is one of the benefits that's been replaced by universal credit.

Andrea Fox
Right.

Bez Illy
So, if someone is not currently claiming tax credits and hasn't recently, then they won't be able to claim. If they're already receiving tax credits, then that would continue until they’re moved over to universal credit, which is likely to be 2024. If you're getting child tax credit and you start working, you might be able to get working tax credit to help you when you start working, for example.

Andrea Fox
Yeah, and we've mentioned that travel can be an issue for some people living with a disability. But are there any vehicle or transport benefits and schemes that can help support them?

Bez Illy
So, if someone's getting the top mobility rate of personal independence payment or disability living allowance, then they can access the mobility scheme if they would like to, where they can rent a disability accessible vehicle so they can kind of swap their money for that. And, also, if they get either rate of the mobility side of it moving around section, then you can get either a 50% reduction on your vehicle tax or 100% exemption. And yeah, the disabled persons railcard is there for people with mobility impairment, so that could be something available. And then there's also the blue badge schemes to allow people who have got mobility impairment to park close to places that they need to get to.

Andrea Fox
Yeah, that would be the one that I think lots of people will have seen before, won't it? What help is available when it comes to people's homes and their housing?

Bez Illy
So you've got in universal credit and the old legacy benefit housing benefit, you've kind of got support with rent. Universal credit also has the thing that if you're not working and you've been on universal credit for nine months, then you might be able to get a loan to help you with your mortgage interest payments. And then there's the Council tax support. If you're on a low income, you might be able to get a reduction in your Council tax. If you live alone, you should be able to get a 25% discount on your Council tax, single person discount. And if you use a wheelchair and have a home that is adapted so that you can move freely in a wheelchair or you use a separate room in your property for reasons to do with your health condition, then you might be able to get a reduction in your Council tax band. And then kind of looking at community care side of things, which my colleague deals with, there is a disabled facilities grants for people on low incomes who might need adoptions to their house to help them move around and do kind of essential activities in their home.

Andrea Fox
Right. And it's all good things for people to be looking into really, isn't it? Especially to do with Council tax. And when we think about students out there with a disability, what support is available for them?

Bez Illy
So, benefits can be tricky if they're entitled based on how their health condition affects them, they can look at personal independence payment as something that they might be able to claim. Obviously standard student loans may be available and there is a disabled student's grant which they might be entitled to. Things like universal credit and employment and support allowance can be trickier for them to claim those, so they should kind of get specialist benefits advice if they want to look into that.

Andrea Fox
And what about retirees? From students to retirees, what about retirees living with a disability?

Bez Illy
Yes, if you're already getting pip or disability living allowance before you reach state pension age, then that will continue after you reach state pension age, although the mobility section of it that you get cannot be increased once you have reached over state pension age. And then, if you haven't claimed a disability benefit and you do need to after you've reached state pension age, then you might be able to get attendance allowance which looks more at kind of personal care needs and daily activities. And then, sort of generally, there is the means tested benefit pension credit which you might be able to get if your state pension and any other pensions you're getting or any other income is low and you might need to top up and have a - if you get pip or DLA or attendance allowance, you might be able to get an increased amount of pension credit depending on your circumstances, just to recognise that.

Andrea Fox
Yeah, so it's worth looking into all of those currently.

Bez Illy
Definitely, yeah.

Andrea Fox
And we'll put links to all of those in the show notes as always, but we are nearly at the end of our time today. Thank you for all of this information, so much to take in, but can I ask both of you what would your top takeaways from this podcast be if people could just remember one of the little nuggets that you've given us today?

Bez Illy
I guess I would always say do seek advice. If you're not sure if you're entitled to benefits, you've got nothing to lose by checking. So yeah, if you've got M.S, do contact the M.S helpline to find out what benefits you might be entitled to or if you don't have M.S, then you can go to local citizens advice or use the turn to us benefits calculator.

Andrea Fox
Thanks Bez. What about yourself, Philip?

Philip Anderson
Yeah, I'd say there are people out there that can help you. It may take a bit of finding, but if you're struggling with the complexity of the system, don't give up. I'd also say that while the work that people like Bez do in providing advice is absolutely essential. I think the conversation also outlines that the system just isn't really fit for purpose and isn't really reflective of the values I think we should have a society. The M.S Society is a campaigning organisation and we do believe passionately in sort of raising your voice around injustice and we'd also encourage people to think about getting involved in some of the disability benefits consortium campaigns we've been talking about or more locally talking to their MP and things like that. Like, your voice is a powerful thing always, especially in a context like this.

Andrea Fox
I love that. Make yourself heard. Well, thank you both for everything today. We are at our final question where we like to try and lighten the mood and take you back in time. If you had a piece of advice to give your 18 year old self, what would it be? Who's going to go first? Bez, Can I ask you?

Bez Illy
Sure. Well, I don't know if this is appropriate but yeah, I started doing stand-up comedy two years ago and I really enjoy it. So, I guess I'd probably say like try stand-up comedy when you're 18 because then you'll enjoy it for longer.

Andrea Fox
Oh that's a good I've done that as well. I've recommended so many people. It's such a fun thing to do.

Bez Illy
Yeah.

Andrea Fox
Philip, what about your 18 year old self? Any stand-up comedy wishes?

Philip Anderson
I've never done stand up comedy so I couldn't tell my teen - I'll mention that. I’d also, I’d tell him hair gel just is not the right move. Don't waste your time trying to figure out just move on and maybe slightly more seriously. I'd also say it's more foolish to aim too low than too high and believe in yourself.

Andrea Fox
Oh wow, that's a lovely one. Phillip and Bez, thank you so much. So much information and so many useful, useful bits of advice today. Useful info there and I really appreciate your time. Philip and Bez, thank you so much for joining me on The Penny Drops.

Bez Illy
No problem. Thanks very much for having us.

Philip Anderson
It’s been a pleasure, thank you.

Presenter
Thanks for listening to this episode of The Penny Drops. We hope you learned something new and useful to help you with your finances. We'd love to hear what you think of the series so please do leave us a review or if you have any comments or any questions you'd like us to cover, you can get in touch at ThePennyDrops@royallondon.com. This podcast series is brought to you by Royal London, the UK's largest mutual life, pensions and investment company. Royal London recommends you see professional, independent financial advice before making financial decisions. All views and opinions expressed are those of the guests and not of Royal London.

How can you find more information?

Royal London recommends you seek professional independent financial advice before making financial decisions. You can learn more about the value of financial advice on our website.

You can also find lots of helpful information on financial support and disability on the following sites:

Information on benefits
Benefits and grants entitlement
Benefits appeals
Employee rights
Support for travel
Useful helplines
MS Society resources

This episode was recorded in July 2021 during the coronavirus outbreak. For the latest information on financial support and benefits, visit gov.uk/coronavirus.

Please note that all topics discussed in this episode can vary depending on your personal circumstances. Any figures quoted were accurate at the time of recording.