Saturday 1 June 2024

What are some of my extra costs…

Living with disabilities comes at a higher cost for many aspects of my life. For nearly everything I do I need to purchase a piece of equipment to help me do the task and just in general my everyday costs are higher.

Here are some examples of just some of my extra costs:

  • Having the heating on when it’s cold - making my gas bill higher 
  • Turning on cooling fans when the weather is warm - making my electric bill higher 
Because of my automatic problems I can’t manage my own body temperature as well as the colder/warmer weather even when milder for most people it makes my symptoms significantly worse so for a lot of the year round I’m either needing the heating on or having to use cooling fans
  • Profiling bed and hybrid airflow mattress - additional costs on my electric meter
  • Charging my bath lift 24/7 - more money on my electric meter 
  • CareLink emergency intercom that’s constantly plugged in - more money on the electric meter
  • Higher food bills due to multiple allergies as ‘free from’ food doesn’t come cheap

Some of my other extra costs:

  • Crutches - over £100 to buy a new pair
  • Over bed table - £200
  • Non-spill cup holder - £14
  • Lidded cups - various prices
  • Straws - £4
  • SafeSip non-spill lids - £8 each
  • Straw holders - £5
  • Adapted scissors - £24
  • Hydrate water bottle system - £40
  • Flexi iPad mount for my bed - £90
  • BundleBean wheelchair cosy - £50
  • Pickepacke bag for my wheelchair - £30
  • FFORA handbag for my wheelchair- £68
  • FFORA wheelchair cup holder - £20
  • Medication carousel - £130
  • Pill popper - £4
  • Additional medication - ££
  • Pulse oximeter - £46
  • Blood pressure monitor - £36
  • Communication cards - £2 each
  • Medical History Passport - £30+
  • Wash wipes - £22 for 60 wipes, I use these as an alternative to when I can’t bathe
  • Hands free can opener - £24 (£20 more expensive than a manual can opener)
  • Adapted cutlery set - £33 (for just one knife, fork and spoon)
  • Adapted kitchen knife’s - £30
  • Induction hob oven - £689 (the safest option)
  • Magnetic phone charger - £45 (easier than trying to connect a cable to my phone)
  • PopSocket phone holder - £27
  • Varies app subscriptions to help me mange my health - ££
  • Book ‘Severe M.E.: A Guide to Living’ - £9
  • Book and audiobook: How to do life with a chronic illness’ - £22
  • Pacing management pack - £25
  • Noise cancelling earplugs - £20-£30
  • Neck support cushion - £11
  • Body pillow - £40
  • Blue Badge renewal - £10
  • Anxiety fidget ring - £20
  • Catheter valve and tubie pad per one set - £12
  • Cleaner - £25 a fortnight 
  • Massage therapy - £48 every 2/3 weeks 
  • Heat pad - £30
  • Various braces/splints for my EDS - ££/£££
  • Two sets of adaptive makeup brushes - £80
  • Paying my care contribution each month (yes social care doesn’t come free)
  • Paying my PA’s expenses
* some of these items did come with VAT relief

These are just some of the many aids and pieces of equipment and disability products that are daily essentials for me. Some products I just need buy once, other products I have to purchase repeatedly and replace as they get used and eventually wear out and break or they need updating or upgrading. Some of these products I also have to buy additional parts for, like Velcro patches for my Flexzi or and attachment system to go with my FFORA bag and cup holder (I also have another cup holder for my wheelchair). Also, don’t forget the batteries, or the electricity some of my gadgets require to run. There are also some items that I have to buy several of such as lidded cups, straws, non-spill cup holders, communication cards and many more items.

The item listed are all essential to help me day-to-day and as you can see life with disabilities comes at a higher cost, this is known as the ‘Disability Price Tag’.

The disability charity SCOPE has found that one average households with at least one disabled adult or child face extra costs of £975 a month so as to have to same standard of living as a non disabled household* - this figure is higher than what is given for highest rates in Personal Independence Payments (PIP) so some households are spending more than what they are receiving in PIP to help them cover their extra costs. This can push some disabled people or families into unnecessary debt. SCOPE is proposing a Social Tariff to give those eligible £12 a week to help them with the extra costs they face pulling some disabled people and families out of poverty. 

* SCOPE Disability Price Tag 2023