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Guest post: The special needs price tag

LauraRutherfordLauraRutherford Posts: 16Member Courageous
edited September 2016 in Guest blogs

Scope’s work with the Extra Costs Commission highlights a total bug bear of mine -being disabled costs money. Those that know me know my hatred for what I, and many others, refer to as the "special needs price tag".

I’ve mentioned it previously as it was part of the reason for my campaigning for supermarkets to sell/ manufacture bigger nappies for disabled children. But it’s not just special needs nappies that are over-priced. It’s pretty much everything labelled under disability. If you’re disabled or you have a loved one who is disabled, you’ll know what I mean.

The special needs price tag affects us in lots of ways and it's a barrier that is difficult to overcome. High-cost specialist equipment, adaptations and insurance are things that a lot of the disabled community continuously face. Unfortunately we don’t all have money trees growing in our gardens or Nick Knowles knocking at our door (wouldn’t that be nice though?). No, these extra costs are an added bonus to a life already challenged by disability. 

For a start, we need accessibility. Everywhere. I’m talking in our homes, schools, hospitals and whilst out and about. Yet a lot of businesses claim that they can’t help the disabled community by becoming more accessible for us because of cost factors. They’ll always throw in that they adhere to the Equality Act (2010) of course! 

Excluding the general lack of public understanding and awareness of what it takes to achieve access for all, the cost of making these changes and providing specialist equipment is of course massive and a barrier to us achieving this. This is evident to us personally when we are looking to make adaptations to our homes or purchase things like specialist wheelchairs or car seats. Suppliers charge too much and it is affecting us in every way possible. 

I could give endless examples of the special needs price tag. I’m currently looking to buy my four-year-old son, Brody, a new car seat. The one I think we need looks exactly the same as his current seat. It’s the same brand too. The only difference is the 5-point harness tolerates a higher weight. Yet it’s £600 – nearly seven times the price of his current seat. I need this seat for my son’s safety, not to mention it’s a legal requirement. But someone somewhere has decided to take advantage of that.

Brody - a young boy

Brody’s specialist shoes cost in excess of £120 (excluding VAT). I am extremely grateful that the NHS pays for him to have a pair, but the price is ridiculous. And it of course costs them a lot of money. The special needs price tag takes money out of our NHS. At that price it’s not like I can buy him spare pairs. His shoes cost more than my entire shoe collection!

I see people posting in special needs equipment pages a lot about specialist beds, that have high sides and padding. Their children need these beds, again for safety reasons. Yet they’re £6000 upwards. 

Brody has night seizures and there are anti-suffocation pillows available…for around £60! 

Then there are toys and play equipment. Sensory toys that are over-priced (as @AliceS mentions in her blog), that half the time you can find cheaper in discount stores. Brilliant, but extortionate trikes that a lot of people can’t afford without charity funding. There was a toy that Brody used to like playing with in hospital play rooms which has a laughable price tag. It’s essentially a carousel of mirrored keyrings with bells on the end that fans out when you spin it. It’s nearly £60. 

Basically, we’re all being taken advantage of. There are over 12 million disabled people in the UK, with a spending power of £212bn a year. How can these prices be justified? Where is the equality? Why aren’t we all shouting about this injustice? 

I agree with Scope so much, in that we have to shout and make our voices be heard. Be bold and be loud! We need to work together to get better value for money. And as a collective force, who knows? We may achieve this! We can’t sit back and be taken advantage of. 

We need businesses to listen and the government and regulators to stop businesses making things that are overpriced for disabled people. 

One business that has listened is Marks and Spencer, who are a great current example. They introduced a range of clothing for disabled kids, after grandmother Rita Kutt made them aware of the issue of overpriced clothes. And their range is currently expanding due to its success. They sell popper vests from £3, whereas elsewhere I have seen them advertised upwards of £14 each, which is just insulting. 

The SEND community is applauding M&S and rightly so. Remember, we all benefit from this though - them and us. It’s not only great publicity for them; it’s making them money as they are taking advantage of a huge market the right way – quality products at a fair and reasonable price. And that’s all we really want. Equality. 

If you hate the special needs price tag as much as I do, please shout about it. Please make businesses aware that this is unacceptable. Please be part of making the change that we all need. Be bold. And be loud! Use people power. Use social media. Shout from the rooftops of Twitter and Facebook. Tag me if you like, on here or Twitter and I’ll even shout with you (@LauraRutherford) and so will my friends, who champion access for all. I really believe we can make a difference. We can’t sit back and take this any longer.

Replies

  • RitaRothwellRitaRothwell Posts: 17Member Connected
    A great article @LauraRutherford and I hope people reading this will take action about anything and everything that they feel is unfair to our special children and adults who have to suffer indignity whilst paying over inflated prices for everything. We have so many campaigns and change.org going around at the moment it shows that there are a lot of dissatisfied people out there. I'm proud to say I have been able to make a difference to our community with the M&S clothing. But there are so many other areas. i.e. The nappies, Changing places (or lack of them), massively overpriced toys and necessary equipment, and the carers allowance, if you care for someone 35 hrs a week works out at best £2 p.h. If like most carers you look after them 24/7 it is around 43 pence per hour. Would be great if all the campaigns/change.org petitions could be brought together in one massive campaign to the government to have all of these regulated so that we could all live a life a little less stressful.
  • unluckyglounluckyglo Posts: 13Member
    If I had a hospital bed which sits me up and lifts my legs it would be free. However they nearly killed me trying to make my body go that was. So my only chance of night comfort is an expensive chair with duel controls. This lifts my legs then let's me lay slowly back as far as I can go. I also have many other aids. However the yearly cosy of services and insurance for I hope immediate replace is far too much
     Due to massive cost also have too supply some dressings and ointments. Not what you want when unwell or looking after someone with needs. I think they know we have to have it and price accordingly. Terrible
  • LauraRutherfordLauraRutherford Posts: 16Member Courageous
    If I had a hospital bed which sits me up and lifts my legs it would be free. However they nearly killed me trying to make my body go that was. So my only chance of night comfort is an expensive chair with duel controls. This lifts my legs then let's me lay slowly back as far as I can go. I also have many other aids. However the yearly cosy of services and insurance for I hope immediate replace is far too much
     Due to massive cost also have too supply some dressings and ointments. Not what you want when unwell or looking after someone with needs. I think they know we have to have it and price accordingly. Terrible
    Sorry to hear. How awful for you. It's appalling how much everything costs. It's taking advantage of those in need. Really angers me. 
  • milomilo Posts: 165Member Pioneering
    @Laura Rutherford, I think you're absolutely right when you say that when it comes to adapted equipment then the pricing is sky high despite so many of us being on fixed income.  I've recently been looking for an affordable handcycle for myself. If I was able bodied I could easily buy a decent bike for under £200, the handcycle equivalent will cost me a minimum of £1000. As much as I'd like to buy one,  I can think of so many other things I could do with that kind of money. 

    I know it wouldn't be appropriate for all items but I'd like to see more locally run equipment libraries where equipment can be swapped or loaned out for a small fee. I'm sure there is all kinds of usable equipment gathering dust in lofts and garages acrossacross the country. 
  • LauraRutherfordLauraRutherford Posts: 16Member Courageous
    edited August 2016
    A great article @LauraRutherford and I hope people reading this will take action about anything and everything that they feel is unfair to our special children and adults who have to suffer indignity whilst paying over inflated prices for everything. We have so many campaigns and change.org going around at the moment it shows that there are a lot of dissatisfied people out there. I'm proud to say I have been able to make a difference to our community with the M&S clothing. But there are so many other areas. i.e. The nappies, Changing places (or lack of them), massively overpriced toys and necessary equipment, and the carers allowance, if you care for someone 35 hrs a week works out at best £2 p.h. If like most carers you look after them 24/7 it is around 43 pence per hour. Would be great if all the campaigns/change.org petitions could be brought together in one massive campaign to the government to have all of these regulated so that we could all live a life a little less stressful.
    [email protected]! I really hope people begin to shout more too. I know it won't always work, but sometimes it pays off and I think there are some good examples to prove that ;-)

    I think the more people that shout the better, but the louder we shout together through campaigns, social media - facebook, twitter, etc - that's what it's all about. It's people power isn't it?
  • LauraRutherfordLauraRutherford Posts: 16Member Courageous
    milo said:
    @Laura Rutherford, I think you're absolutely right when you say that when it comes to adapted equipment then the pricing is sky high despite so many of us being on fixed income.  I've recently been looking for an affordable handcycle for myself. If I was able bodied I could easily buy a decent bike for under £200, the handcycle equivalent will cost me a minimum of £1000. As much as I'd like to buy one,  I can think of so many other things I could do with that kind of money. 

    I know it wouldn't be appropriate for all items but I'd like to see more locally run equipment libraries where equipment can be swapped or loaned out for a small fee. I'm sure there is all kinds of usable equipment gathering dust in lofts and garages acrossacross the country. 

    That's so unfair @milo It's not just not right that these things are priced so that no one can really afford them. The companies that make products would be far better off with reasonable prices as surely they'd sell lots more. I think they just bank on cornering the market so people have no other choice but to go to them. Totally taking advantage!

    That's a great idea you have.
  • 3_SAMagnify13_SAMagnify1 Posts: 20Member Connected
    Yes  as and adult  with ataxia CP in my experience to council operated sheltered housing . The government does place responsibility for providing sheltered accommodation for both older people (the who are approaching retirement or who have already retired) and the same service for those with disabilities with support out of office hours. 

    As far  I am aware, Decorating cleaning windows and repairs are chargeable to tenant regardless of whether or not the person is disabled and/or for example entirely dependent on their benefit. Not all of us have parents/relatives who live close have time and are willing to do decorating or other maintainence. In fact  demographically  speaking it is increasingly likely that disabled people won't have relatives nearby yo help. Surely  for local ccoucil lans when it comes disabled tenants the duty of for jobs that maintainning the flat issues like decorating/ cleaning windows and where necessary basic cleaning (vacuming mopping floors) should be the duty of care of  council landlords. I accept there may be differences with private landlord where properties are part of hosing associations and  those properties that are lease hold and rented out  by individual private landlords. Should individual private landlords even allow to provide housing for disabled people. 

    Disabled people are not only lumped in with the elderly when it comes to housing they are often also lumped in with those with mental illnesses such as schizophrenia those with addictive issues ex convicts and older people and people have previous been homelessness often with no out of hours warden. How is is possible to adequately the needs of a tenants with disabilities if there are so so many other tenants groups with different and sometimes conflicting needs in one property especially where are many tenant in one property and many properties in one town/city or a few properties spread over one one large town and a city?

    It is often has lived have lived independently they are seen as of being in less urgent need of living in for example sheltered accommodation or even somewhere with little more space even if they require relatively minimal support from private care providers. If they do the latter they lose 14% less hosing benefit for one bedroom or 25% for two bedrooms regardless of the needs of the disabled person or what reason why the room may be needed.
  • PhilipPhilip Posts: 34Member Courageous
    With my physical and mental health problems there is equipment that I should have to help make my life a bit easier, however, I can't afford the things I require. We may get benefits for being disabled, but, being disabled is a lot more expensive than people think!
  • foxukfoxuk Posts: 93Member Courageous
    My wife and I both need electric beds.

    I am sure the dreaded SS would supply one for her and make sure it was large enough to exile me to another room - but that's another matter.....

    I saw the perfect bed on ebay. All metal decent motor. 28st YES suitable for even us fatties! and at a decent price £359 each inc VAT.

    I asked the seller if they could supply two with VAT relief and the answer came back a simple 'we don't do that'.

    I have searched and they are not available from anyone else in the UK.

    Perhaps IF Disabled People were able to claim back VAT wrongly charged it would help the situation.

    I'm also searching for a decent recliner/riser for herself. (My wife hasn't been able to stand since her last hospitalisation where she was kept in bed except for ONE transfer to a chair per day for 27 days before discharging herself and hasn't been able to stand since).

    So it's a Dual motor recliner which seem to be sold out in the 'retail' section at £150-£250 BUT are still available in the 'Care' sections at £500 upwards.

    Sometimes I think that when I became 'Disabled' they tattooed VICTIM on my forehead in ink that was visible to salesmen!



  • PhilipPhilip Posts: 34Member Courageous
    Actually it's not victim they tattoo on your forehead when you become disabled,  it's idiot, I sure that's what they think we are
  • ajchmajchm Posts: 8Member Connected
    Our additional costs seem small compared to others here but they do mount up. Due to autism and mental health issues, we need to find accommodation that fits 4, fine when they were younger, but now over 16 in many places it isn't allowed, or the 4th bed is only for a child - executive suites are perfect, for a price of course. Then there is travel insurance, she's uninsurable if I'm honest due to self harm - so I lie, knowing that we have ehic cards and we are more interested in the hotel going bust bit of the insurance. Another cost is time off work, or in our case having to be part time - college couldn't provide the one-one support needed as she doesn't qualify yet cannot go on trips without supervision and the trips are unsupervised, luckily they let me go on the coach but not ideal. I'm not looking forward to attempting to get support for university, she needs it to ensure she eats, is safe etc. I'm gearing up for a battle
  • anaqianaqi Posts: 54Member Courageous
    If I were to buy all the things I needed to cope with my disability I would be in at least £20,000 of debt.  That's the cost of being safe and being able to live the kind of life that most people take for granted.

    I have been assessed as needing a stairlift but because my husband has a full time job we don't qualify for a grant.  Our stairs are curved which prevents us from buying second hand and the OT estimated the cost to be around £9,000.  There is no way we can afford this so I'm left struggling on the stairs.  

    I'm waiting to hear if I can have an appropriate bath lift.  The bath lifts my OT usually loan out are not suitable for me as I have a family who also need to use the bath and the lift is very heavy.  There is an inflatable model that would suit my needs better but it is a 'special order' item and I'm waiting to hear if they will fund it.  If not I will have to pay £500 to buy my own.

    I can't propel the manual wheelchair the NHS loaned me so to allow me to move around outside the house I spent £600 on a mobility scooter.  Unfortunately that no longer meets my needs, using it causes pain and I need a powerchair to be able to leave my house independently but I can't get a powerchair assessment from wheelchair services because I can mobilise inside my own home on crutches.  This causes me pain and I'm at risk of falling but I can walk therefore I can't get a powerchair assessment.  

    I spent £600 on buying a second hand powerchair but that doesn't completely meet my needs as I need  to be able to change position and raise my legs.  I can't afford a second hand chair that does that because prices start at £1,500.  New they cost over £5,000.  

    Using a powerchair creates additional problems.  We can't get the powerchair in our car as it's too big and heavy.  Ideally I need a WAV or a people carrier with a powered hoist but we can't afford to run two cars and my husband needs our car to go to work.  I could use my DLA to lease a motability car but I'm due to be migrated to PIP and I don't know if I will qualify for the enhanced rate because sometimes I can walk short distances on crutches.  Even if I do qualify I might not be able to afford it if I lose my current lower rate care allowance.  

    I need compression stockings to manage a medical condition but I'm only allowed 2 pairs every 6 months.  I've had my current ones 5 months, one stocking has a run it in and the elastic has gone in the other pair.  If I wanted to buy some equivalent stockings it would cost me £50 a pair. 

    The costs just go on and on.  Medical supplements, physio tape, supportive shoes...  I've had to pay to get my diagnosis as the NHS let me down for 23 years.  I have to pay to get to London to see my specialists as my conditions are rare and the local consultants are not experienced enough to treat me.  That can cost up to £200 in train fares.  I've also been told to pay privately for the physiotherapy treatment I need because I can only have a limited number of sessions on the NHS.

    I can't afford all of these things but I can't afford not to have them.  My options are to get into debt, go without or go begging to charities.  It's disgraceful and something has to change.
  • JanisJanis Posts: 1Member
    There are a lot of hidden costs that are indirect as well as the direct costs of disability. I don't want to complain, because we know others are much worse off, but as a plain statement of how it affects us currently, here are a few points:
    • Our son is now adult, but because it costs so much for him to have carers take him on holiday due to his challenging behaviours, we take him, but of course, there's the single room supplement... 
    • Family carers don't get reductions if people are in independent living so we have to pay high prices to take him on his favourite trips and days out.
    • His disability impacted on our career choices and promotion chances and now we are living on pensions, we feel the pinch financially
    • Social Services miscalculated costs when he went into independent living so we ended up subsidising him out of savings - to the tune of £1,000 a month which we never were able to recoup. We delayed retirement and are working past retirement to keep afloat. It's been sorted but it took over a year!
    • Entertaining him when he was little because of his ADHD was expensive, car trips and playgrounds. It's expensive anyway for a family, but do it every weekend and it eats up family income.
  • Innit4lyfInnit4lyf Posts: 4Member
    edited November 2016
    Practically speaking, the moment when you or even your child becomes ill i.e. Physically or mentally challenged mean that he/she joins the guinea pig group of people who will have to pay the extra sum of money, be it through hospitals, Medicare, NRS, or any mainstream store, they buy the product at cost and for able bodied people the price tag is 2.5 times higher, but to those who are physically or mentally challenged ( I do not use disabled as it means there's something wrong with you, I see it as a challenge not a disability ) the price tag goes up by a further 1.5 making it 4 times the original cost. The daily cost of needs equipment needed is available to a certain %age but should you fall outside this then you well earned money may not cover the whole amount needed for you or your child's needs, I have thought of opening a store specifically for people who are physically or mentally challenged, the problem there is gaining a wide area for coverage, accessibility, and a play area where a cuppa tea or mug of coffee costs very little, these things are a giant leap in any needs basis, but the human race sees the challenged people simply as guinea pigs to poke and prod at any point, we are human after all but where money is concerned, we are mere puppets to the global infrastructure of £££'s/$$$'s, pushing costs higher to specific needs and wants of those who are physically or mentally challenged...
    Take cars for instance, for a manual you would normally pay no extra but go for an automatic and the price goes up substantially, if we all were to take these messages to higher authority, it wouldn't make much difference, so be prepared to go to charities and ask for help if you need it... 
    Anyone after specific clothing, will pay a higher price than that of non specific clothing, if you have time, and willingness to look try, typing the product that you require then let the search engine find you what you need, to those after compression socks/leggings ask your local GP for help as you can get them for as little as £8 a pair ( I get mine from McGills pharmacy ), it pays to search out what you need at lowest cost but looking at health and safety awareness requirements too...
    innit4lyf
  • 3_SAMagnify13_SAMagnify1 Posts: 20Member Connected
    I have Ataxia and Cerebral Palsy and require carers I want to go on holiday which is expensive because of getting right accommodation(accessible) and  mileage charges for transport in the carer's car. There is an additional problem of the fact that my parents don't believe that I have my disabilities and therefore don't believe that  I need carer and that I'm being. I've tried to get them to have holidays and other activities with me and  also with a carer. they won't even consider trying the idea once. Mind wouldn't  any allowance for my needs in terms of accessible bathrooms when I used to go on holiday with them. I should perhaps add that my conditions weren't diagnose until I was 26, in February 2005.

    My mum.who is 68 also has mobility difficulties as yet we don't know what is causing the problems she has,
  • Innit4lyfInnit4lyf Posts: 4Member
     Try looking at accessibility holidays here in the U.K. There are several companies that provide all the needs of a challenged person, with any amount of requirements requested, most will fulfill you wants and needs there. Accessible holidays even go abroad too
  • 3_SAMagnify13_SAMagnify1 Posts: 20Member Connected
    I have found some of the accessible holidays not still I am now 38,  not all of are fortunate enough to have money come to us from elderly relations/step relations of a generation who would not have had the expectation of owning their own property. If you only have only your benefit to live on then even having a holiday in this country in place of your choice that is not on a self catering  or B&B basis is out of your reach in some hotels even the B*B option is too expensive. In my case we're looking at 3 hour journey to for example Dorset with a millage charge for cost of the cost of the fuel for a carer's car. Abroad would probably be out of the question as I can only consider All Inclusive packages.
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