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Discuss extra costs for disabled people and families

Debbie_Alumni Member Posts: 944 Pioneering
Hello I’m Debbie, and I work on Scope’s helpline. My lead role is Benefits, Finance and Housing. I speak to people all the time who tell me they’ve had to pay over the odds for a bit of essential equipment. 

We know that extra costs are something that disabled people and families with disabled children face every day. And the Extra Costs Commission is a year-long independent enquiry that hopes to start changing that. We want to keep highlighting these issues and supporting people through them. 

So, do you need any financial advice about how to handle these extra costs? I can help you with benefits queries, advice on where to go for grants, and point you to places in your local area that could help or give you a better deal. 

I’ll do my best to answer all of your questions and look forward to hearing from you! 


  • Nick Wild
    Nick Wild Member Posts: 1
    I often have difficulties with using public transport, so I have to pay for taxis. The cost soon mounts up. I also get through certain clothing really quickly.
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering

    Hi Nick,

    Thanks for your comment. Taxis and clothing are two of some of the most talked about 'Extra Costs' and we hear from people all the time who are affected by these, and many other extra costs.

    The Extra Costs Commission interim report launches this week. This is a big moment so check back with us this week to learn about the Commission's findings so far!

    Also, if you have any tips for the rest of the community on how you manage these extra costs, please share them with us.

    Best wishes


  • klowe
    klowe Member Posts: 1 Listener
    I live on my own and due to my disabilities use extra water but at the moment I'm paying £94 per month to United utilities is there anything I can do?
  • Susan Bullock
    Susan Bullock Member Posts: 2
    I am a concerned neighbour of a 61 year old single gentleman who was previously long term unemployed with little or no work based skills so will perhaps have very little prospects of obtaining suitable work especially due to his recent health issues .He has had an emergency total colectomy and now has an ileostomy (stoma bag).Although he has claimed ESA he has at present been awarded only the working capability group and really expects that he will perhaps be back on jsa in the very near future if the dwp has their way as atos is pestering again even though he has only just been assessed and come off the assessment rate of ESA.He has been told by a DWP visiting officer that in her opinion  he would be ineligible for PIP as he is learning to manage his own stoma care.The extra costs involved for ostomists is extra water and extra fuel costs for hot water for bathing and washing clothing and bedding more frequently than non ostomists. But these costs would not be taken into consideration in JSA.
  • SarahLou
    SarahLou Member Posts: 2
    I have a neurological illness (chronic migraine disorder) which causes a million problems but the main ones are constant severe pain, fatigue, disorientation and short-term memory loss. I have to pay extra for ready meals because I can't safely cook, have to get taxis everywhere, always have to have the heating on, need a lot of health stuff like ice/heat packs not available on the NHS, have to pay someone to do my laundry & housekeeping because I can't do it myself, etc etc etc. I've applied for PIP but it's been over 12 months, still nothing, and I'm now waiting on an appeal hearing which will be June at the earliest. Do you know of any charitable grants available to people with my condition? I'm 21, female, in full-time education and also have depression.
  • Laura Bradshaw
    Laura Bradshaw Member Posts: 1
    edited March 2015
    Buying heat/cold pads for pain, buying other things that might ease the pain, buying shoes constantly as my splint ruins them.

    Taxis, buses that are before/after my bus pass works.

    Foods to meet dietary needs means spending more

    Transport for hospital visits


    Mobility aids not covered by support services

    Need heating on more so joints do not sieze as much

    So many extra costs....

  • Gillian Jones
    Gillian Jones Member Posts: 3
    There is 3 of us in my house that are disabled but only i can get a bus pass which i use all the time but have to pay for my daughter cos shes 15, it is hard getting the clothes ready for her as she has aspergers/ depression
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    edited March 2015

    Hello Klowe,

    Wow £94 a month is a lot to find each month for water. Do you have arrears on the account or is the monthly figure based on your usage?

    I've checked with United Utilities and they are currently trialling a Support Tariff in certain areas which could be helpful if you live in one of the trial areas. Find more information about this tariff on the United Utilities website http://www.unitedutilities.com/support-tariff.aspx . They also have an Arrears Allowance Scheme for people struggling with water debt http://www.unitedutilities.com/Arrears-allowance-scheme-home.aspx

    For customers with a water meter who use large amounts of water for essential purposes, the Watersure scheme could be worth looking into http://www.unitedutilities.com/Watersure.aspx

    Finally if you are in financial hardship, you might be eligible for help from the Trust fund which could provide a one off payment to help you get on track again http://www.unitedutilities.com/trust-fund-home.aspx

    Hopefully this will give you an idea of the help that is available to you. All water providers will have similar help schemes so anybody else struggling with their water bill should make enquiries with their provider to see what help is available. If you don't want to talk to your provider, get some advice from the Citizen's Advice Bureau or a money advice service. Alternatively view Scope's pages about utility debt http://www.scope.org.uk/support/disabled-people/money/utility-debt

    I really hope this information helps klowe, if you need further advice, do get in touch again.

    Many thanks

    Debbie :)

    I hope this helps.  

  • jackierice
    jackierice Member Posts: 3
    I have a rare neurological condition and use all of my DLA to pay for care. I am retired, and have £100 a week left to pay for food, bills and clothing. Entertainment is a thing of the past as I cannot afford cabs/taxis any more! I get a direct payment for night time care, and contribute £307 per month towards that. The rest of my DLA funds my day time care. I am allowed £10 per week for 'disability related expenditure' and I would need to produce receipts to get any more, which is a logistical nightmare for me! DLA (in written law) is meant to enhance the life of the disabled person. It does NOT have to be used to provide care e.g if you don't have carers you can still get it. I, therefore, do not feel equal!
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    edited March 2015

    Hi Susan,

    Sorry to hear
    about your neighbour, it sounds as though he could do with some face to face
    advice from a welfare benefits adviser.How long ago did he have the colectomy
    and how long has he been managing the stoma bag?

    If the
    following descriptor applies to him he will be assessed as having a limited
    capability for work related activity which means he should be placed into the
    support group.

    ‘8. Absence
    or loss of control whilst conscious leading to extensive evacuation of the
    bowel and/or voiding of the bladder, other than enuresis (bed-wetting) despite
    the wearing of or use of any aids or adaptations which are normally, or could
    be reasonably be, worn or used

    At least once
    a week experiences:

    1. Loss of control leading to
      extensive evacuation of the bowel and/or voiding of the bladder; or;
    2. Substantial leakage of the
      contents of a collecting device, sufficient to require the individual to
      clean themselves and change clothing.

    If this
    descriptor applies to your neighbour then I would advise him to get some face
    to face advice and help with a challenge. If you could tell me roughly where
    your neighbour lives I will search for services that can help him in his area.
    I cannot guarantee that he is going to qualify for the support group but it
    really does need following up.

    As for PIP it
    is certainly worth getting some more advice about this benefit. The website www.benefitsandwork.co.uk has
    a PIP self- assessment test where you can look at all of the activity
    descriptors and self- score. This will give your neighbour an indication of
    whether he would qualify for PIP. Again it is probably worth getting some face
    to face advice about this.

    absolutely right about the extra costs involved for ostomists and these extra
    costs are affecting disabled people and families with disabled children

    The interim
    Extra Costs Commission Report has now been published and can be viewed on the
    Extra Costs website www.extracosts.org orhttp://www.scope.org.uk/campaigns/extra-costs-commission

    I hope this
    information helps.

    Kind regards


  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi SarahLou,

    I'm really sorry to hear that you've been waiting so long for PIP. We've heard from lots of people since PIP came in who have experienced extremely long waits. You say that you're waiting for an appeal hearing, does this mean that you've had a decision which was not in your favour? I would be keen to know what stage you're at and whether you are getting any help with your claim.

    Our advice to people who are experiencing long waits for their PIP claim to be decided is to contact your local MP and raise this issue with them. In some cases applicants can apply for compensation if there has been an unreasonable delay, you've been given wrong advice or you've lost money. You should not lose out financially or suffer undue distress. Compensation payments are made on a case-by-case basis and there is no automatic right to compensation payment. Anyone who thinks that they may have a case for compensation should seek further advice from DIAL or Citizen's Advice Bureau who can assess the case.

    I do not know of any grants specifically for people with your condition but www.turn2us.org.uk has a great grants database with over 3000 charities providing grants for a variety or different purposes so it's worth having a look on the website and seeing if you qualify for any grants there.

    May I ask what you need a grant for? There could be other sources of financial help available and it's always best to exhaust these options before applying for a charitable grant. If you could let me know I'll see if there is any help available for you.

    Best wishes

  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi Laura Bradshaw,

    You're absolutely right, the extra costs you've mentioned have come up time and time again. We hear from people all the time who are waiting for PIP claims to be decided or have been reassessed from DLA onto PIP and have lower or no entitlement. Regardless of whether a claimant is due a backdated payment, this is not helpful for the here and now is it?! We have heard all kinds of stories about the debt people have accrued due to these extra costs, it's really quite shocking!

    You mention that you have to pay for prescriptions; it's worth checking to see if you can get any help with these costs. One way of making this more affordable for people who are not entitled to free prescriptions is to purchase a pre-payment certificate which can save you money. More information on the NHS website 

    Thanks for joining in the conversation with us. If we keep talking about these issues, together we can raise more and more awareness of the problems and hopefully bring these costs down!

    Best wishes
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi Gillian Jones,

    Are any of your household receiving DLA or PIP to help with these extra costs?

  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi Jackierice,

    You've made an excellent point there and this again is something we hear from people frequently. Another example is people who have been affected by 'bedroom tax' or shortfalls in their housing costs. Often people have no other choice but to use their DLA/PIP to meet their housing costs. This then means that they do not have the funds available to even start dealing with all of the other extra costs. You're also quite correct that about the logistical nightmare involved in providing receipts and evidence for disability related expenditure. Do you have any support networks that could help you with this? It simply is not right that people are not getting money they are entitled to because the system is too complex and it's too hard both physically and mentally to cope with, not only getting the benefits and care in place but keeping them in place.

    It's also an absolute shame that entertainment is a thing of the past for you. We're all entitled to some leisure time. Are there any local activities you can participate in, that doesn't require transport, or transport can be provided for free?

    Thanks for joining in the discussion.

    Best wishes

  • jackierice
    jackierice Member Posts: 3
    Thanks for your reply Debbie. My entertainment is mainly home based nowdays. I do have a wonderful family, 3 sons and 5 grandchildren who have all bought houses that are accessible to me. We do party!  My youngest son lives in Ireland, so I have not been able to afford to go there at all for 18 months. That counted as a holiday for me. I also used to go to the 60s music festival weekend at good old Butlin's every year but, as I need to take a carer with me (who I would have to pay for, of course!) I can't afford that this year. DRE only allows for certain types of holiday - like an accessible, disabled persons hotel or something - which is fine and dandy if that's what you like to do. I'm a fun loving, musical, party animal type so my type of holiday doesn't count, ha ha! I like live music, but it's no fun coming back on the bus at 2am! That's the problem, my lifestyle doesn't equate to the stereotypical 'Disabled Person'....I didn't mean to give the impression of a lonely, sad, old, disabled pensioner. I enjoy reading, painting & drawing and, of course, music - I would love to be able to access the theatre too, which sadly, is now out of my price range. Also, my beloved parents are buried 100 miles away in Gloucestershire. I used to pay/provide petrol for a driver, but no more! I have to wait until one of my sons (who all work very hard, incidentally) can take me. I do usually manage to get there 2 or 3 times a year though, so I mustn't moan too much! I don't like moaning as it doesn't do the soul very good but, having paid my taxes for 35 years before my 'medical accident' disabled me, it does peeve me somewhat to have to give up some of the things I love most. But, hey ho, that's the way it goes I guess! As far as the receipts for DRE go, most of my shopping is done online, so receipts would have to be printed. I think they like 4 weeks worth every 6 months. They don't allow for printer ink either....Doh!
  • Trish Duffy
    Trish Duffy Member Posts: 1
    edited March 2015
    My daughter Kaitlyn, is 7, she is autistic.

    We get HRC- LRM DLA, although the social worker has told me to try for the higher rate Mobility.

    This really helps with the cost of having a disabled child, however before we managed to get an assessment through social care, school and integrated services really expected this money to stretch much further than it was capable of doing!

    Even scope's own respite service for disabled children through short breaks is costly when you add it up. £2.50 per hour, plus activity and fuel allowance meant I was paying about £20 a week for 4 hours respite.

    Sensory items are bumped up as soon as 'special needs' is added to the label, and they are easily broken by a child who doesn't quite get pressure right and can be heavy handed. Some things have to be replaced regularly, like chewigems.
    Other sensory items are just expensive, sometimes I feel only a lottery win would allow me to shop in some of these sensory catalogues.
    Then comes the electric bill for having a bubble tube, soft sensory lighting, and other light up sensory items.

    Kaitlyn can physically put one foot infront of the other, but due to the complexity of her autism and sensory integration difficulties, at times she can't mentally go any further without being in distress. We have a special needs buggy for round town from NHS- which didn't include things like a sensory Canopy or rain cover, but in order to take Kaitlyn to wooded 'off road' areas we would have to find £640 for an all terrain three wheeler special needs buggy.

    I can not even begin to explain how many Velcro backed laminated pictures I have around the house. Or how many social stories I've printed. Pretty sure our local stationers had to increase the order of canon printer ink and laminator pouches when I started shopping there!

    My daughter goes to a special school in the next county as there was nothing suitable in our county... The petrol costs are obviously a lot more to get to parents evenings, but we also have regular therapy and IEP meetings which I have to get to.

    There are absolutely loads of additional costs to having a disability , these are just off the top of my head.
  • SarahLou
    SarahLou Member Posts: 2
    edited March 2015

    Hi Debbie

    Yes, both the first decision and the mandatory reconsideration awarded me 0 points in every category - unsurprising as they didn't seek any appropriate medical evidence and didn't do a face-to-dace assessment (despite Capita decision I'd have an assessment at my home - when I contacted my MP and complained about the delay in getting an appointment, their response was to close my case without doing an assessment and send it to the DWP for a decision). When I needed more than 28 days to try and get evidence myself for the mandatory reconsideration, I phoned for a deadline extension and they ignored my request and did the MR anyway. I really don't like the DWP! So now I've appealed and am trying to gather evidence as best I can when I'm in agonising pain all day every day. I don't have any help with my claim, I'm a law student so I'm doing it all myself.

    Interesting about compensation where there's been an unreasonable delay - I've definitely lost money, I applied for ESA and Housing Benefit but can't get them until I get PIP so the delay has cost me many months' worth of those - I will look into this further, thank you.

    A grant would be for general living expenses, hiring a carer, some aids for around the house (like one of those kettles you don't have to pick up) and potentially a mobility aid. My overdraft is already at maximum and my university's hardship fund rejected my application - where else should I look?

    Many thanks


  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi Jackie,

    Wow, we've got a lively one here, we'll have to keep an eye on you!  You've made such a good point about holidays and the need to pay for carers to go along too. The prices can be incredibly expensive and that's before you've even looked at accessible accommodation. All of these financial barriers make it so very difficult for disabled people and families with disabled children to participate in normal everyday things that the rest of society takes for granted. Another good point you made was that your lifestyle does not equate to the 'stereotypical disabled person'. We hear this a lot and it's quite disappointing in these modern times that we still have stereotypes and numerous barriers.

    It sounds like you have a wonderful close knit family despite the distance though so carry on with partying, I admire your positive outlook on life!

    For days out and trips to the theatre, cinema etc it's always worth browsing sites such as http://www.moneysavingexpert.com/deals/cinema-and-theatre#travel-and-days out 
    The Money Saving Expert website is genius in my opinion, such a range of money saving deals. 
    Also http://www.hotukdeals.com/ can be very good for picking up some very good discounts. Last year I picked up tickets for a safari park for £1 each saving a fortune in the process.
    Cashback websites such as https://www.topcashback.co.uk/home can be a great way of saving money. You get cashback for purchases which you can save up and then use to buy things for free. It's very useful for things that you have to buy like car insurance or utilities. Using sites like this can benefit you quite considerably so it's worth checking out. I refuse to pay anything these days until I've done all the research and made sure I'm getting the absolute best price! I hope that some of these ideas might be useful.

    Have a great day!


  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hello Trish,
    Thanks so much for taking the time to join in with the discussion and sharing your experiences. I have nothing but respect for parents like yourself who not only provide wonderful care to your children but you also have to be financial geniuses and legal experts in getting things done and in place and then keeping them in place.
    Before you apply for the higher rate of DLA mobility, get some advice from a Welfare Benefits specialist who can support you with this. If you would like me to look for some services which can help with this, let me know. Unfortunately Benefits advice is much harder to come by these days since legal aid was cut and many organisations have had to close due to lack of funding. Add to this the numerous changes to the welfare system and it's a bit of a nightmare out there at the moment, so please do get some support with this.
    You're absolutely spot on when it comes to sensory items and how expensive they are, not least when you add the cost of electricity to things as well. Does your local authority have a 'Sensory Toy Library'? In some areas you can borrow sensory toys for free so do check with your local authority to see if they have a scheme running. The charity Cerebra has a wonderful library where you can borrow books and sensory equipment for free and it's all done by post http://www.cerebra.org.uk/English/gethelp/library/Pages/default.aspx
    Of course there's always sites such as www.ebay.co.uk for used equipment and www.disabledgear.com for instance. I'm pretty sure that if you sat down and listed every single extra cost there would be a very, very long list. You mentioned petrol for instance, this is a cost which has rocketed over the last few years. Ok we're now back down to some more reasonable prices but how long for? I've found that the Tesco Fuel Save promotion is very handy. You can get up to 20p a litre off your fuel each month (providing you've spent enough to qualify). The last time I filled my car I used my fuel save points and was paying around 90p a litre. It was like going back in time! Find out more about Fuel Save here http://www.tesco.com/fuelsave. Most of the supermarkets have petrol promotions from time to time so it's worth shopping around and seeing who offers the best deals. You can also find out who is selling the cheapest petrol in your area by using the website Petrol Prices.com http://www.petrolprices.com/. You will need to register to find out exactly where you can find the cheapest petrol but it's worth knowing these things, although it is normally quite difficult to beat the supermarkets when it comes to petrol. The Extra Costs Interim Report which was released yesterday has called for more evidence . If you have time do read through the report and get in touch with the Commission with any ideas you might have. Read the report at www.extracosts.org.uk or http://www.scope.org.uk/campaigns/extra-costs-commission
    I hope some of this information is useful. Thanks so much for sharing your story with us. I love the picture of your daughter by the way!

    Have a great day!
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 944 Pioneering
    Hi SarahLou,
    I'm very perplexed and disappointed to hear that a decision has been made without medical evidence or a face to face assessment. Is it possible that the case was closed because there was no evidence or assessment? Either way I feel your frustration as I'm sure many of our community members do too. Let me know whereabouts in the country you live and I'll have a search for services in your area which can hopefully support you with the appeal. I'm glad to hear that you're a law student, this will come in handy and hopefully you will have access to resources to help you through this. I've mentioned before the website www.benefitsandwork.co.uk and they have a number of guides regarding PIP including the appeals process. PIP is a major problem at the moment and the lack of advice available is causing real problems on the front line. More information about the DWP's Service Standards is available on the government website and it's worth having a read through https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/381015/dwp032-112014.pdf Disability Rights UK has a Disabled Students helpline and they should be able to provide you with some further guidance about the ESA and HB, but you're right, the PIP would be most helpful because as a full time student you don't automatically qualify for ESA or HB unless you fit certain criteria. http://www.disabilityrightsuk.org/how-we-can-help/helplines/disabled-students-helpline
    For grants you can try www.turn2us.org.uk and search their database of over 3000 charities. If you have urgent financial needs Local Welfare Assistance might be able to help with some of those costs. CPAG have a great tool to help you find your local council's scheme http://www.cpag.org.uk/lwas . Local Welfare Assistance Schemes are designed to help people who are in urgent need following an emergency or unforeseen event. They replaced Community Care Grants and Crisis loans for living expenses in April 2013. You would normally need to have exhausted all other options before approaching your council's scheme but do check with your council to find out what their criteria for the scheme is. It's probably going to be difficult to get grants for hiring a carer because this provision is usually met through DLA or PIP but for equipment and mobility aids, you might have more success. Good luck with things and thanks for getting in touch and sharing your story with us.

    Best wishes


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