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Disability Related Costs of Living

Authors: Micheline Mason and Mary Harrison

We are two physically disabled women living on our own.  We are both users of powered wheelchairs and need some day-to-day personal and domestic assistance.  We have both worked most of our lives but are currently retired due to age and increasing levels of impairments. One of us still does a substantial amount of voluntary work which necessitates some overseas travel (partly subsidised). 

We both manage financially on a combination of State Benefits and Pensions, Disability Living Allowance (Highest rate) and small amounts of personal savings accrued over many years. We both have specially adapted cars on the Motability car leasing scheme which we drive ourselves. We both pay Motability Finance £210 a month from our DLA for this hire contract, leaving us with £280 a month to spend on other disability related expenditure. We both receive a Personal Budgets from The London Borough of Wandsworth in the form of a Direct Payment.

Recently we have both been re-assessed for our eligibility for our Personal Budget and, although neither of us have had any increase in our income, we have both been charged more for our care services - £96 and £300 a month more respectively.

We are also very concerned with the current proposals in the Welfare Reform Bill to replace DLA with a new Personal Independence Payment which seems to have no regard for the many extra costs we incur in maintaining a life outside of an institution. We fear this could mean losing the most useful and flexible piece of our monthly income.

It is especially worrying for us that neither in the assessment for a Personal Budget, or a Personal Independence Payment is there any recognition of our needs for help with domestic chores such as laundry or bed-making, and nor is there any component for purchasing or maintaining any of the technology upon which we are dependent. There is a big myth, widely held, that we ‘just get given all that stuff free’.

One big problem seems to be the lack of understanding of the disability related costs for people like us, so we thought we would list all the relevant main items of extra expenditure we have made over the last three years.  These are payments we have made over and above any benefits, grants or Personal Budgets we have received.

This is the result: 

We have multiplied Annual costs by three (for the three years) and by two where appropriate (one for each of us).

  • Personal contribution to top up Disabled Facilities Grant for essential renovation and adaptation of kitchen and bathroom = £10,000
  • Boiling tap and annual replacement of filter (to make hot drinks safely) £300 x 3 = £900
  • Small kitchen trolley (to move cooked meals around ) = £60
  • Renew faulty bathroom hoist (no grant available) = £1,600
  • Annual service for hoist £120 x 3 = £360
  • Purchase of hoist battery back up in case of power cuts/breakdown = £400
  • Annual wheelchair service and repairs £360 x 3 = £1,080
  • New control box for wheelchair (avoided the call out fee of £70 a time by driving car down to Hook in Hampshire) = £400
  • Batteries for chair = £250
  • International battery charger (different voltage) = £180
  • ‘Easy turn’ sheets x 6 = £180
  • Electric Blanket and remote control = £106
  • Personal (mandatory) contribution to Motability car (deposit and cost of adaptions, respectively (every five years)) = £15,000 and £2,000 
  • Unavoidable parking fees (3 years, two people) = £720 approx.
  • Taxi fares over and above Taxi Card Discount (respectively) = £540 and £1,000
  • Watch Alarm (emergency rescue service) £414.96 per annum x 3 = £1,244
  • Portable ramp = £260
  • Support person on annual work related trip to USA, £1,698 (air ticket, hotel rooms, food, daily wage) x 3 = £5,094; ‘Special’ travel insurance £429.57 x 3 = £1288.71; Hired accessible van for 1 week plus airport pickups £450 x 3 = £1,350 = £7,761 approx.
  • Support person to accompany to hospital and GP visits to help lift onto examination couch as staff not allowed to lift £10 per visit x 5 per annum approx £50 x 3 = £150
  • Ceramic knives £24 a set x 2 = £48 (very sharp making food preparation much easier for weak hands)
  • One Monthly supermarket shopping delivery £5.50 x 12 x 3 = £396
  • Visit to Mum with support person three times a year @ £100 per visit = £900
  • Help with gardening, £5 per week x 52 x 3 x 2 = £1,440
  • Painting, decorating and DIY, £300 per year x 3 x 2 = £1,800
  • Miscellaneous (carpet cleaning, repairs, extra heating, using accessible rather than cheap venues, ready made meals and eating out to manage fatigue, alteration of clothes, mobile phones for safety, things we have forgotten) £500 per year x 3 x 2 = £3,000 approx.

Grand Total = £51,335

This is an average of £8,555.80 for each of us per year.

Our current DLA (after paying for our notability car) only provides £3,360. This leaves a gap in funding of £5,196.

These figures do not include holidays, for neither of us can afford them.

We are certain that this picture is typical of the vast majority of disabled people, especially those of us who are technologically dependent.

Our recommendations are:

  • Leave the DLA as an allowance which is disregarded when assessing income for eligibility criteria for services;
  • When a person is in receipt of the highest rate DLA they should automatically be exempt from charges
  • Broaden the scope of Disability Related Expenditure to truly reflect the cost of living with a disability and the fact that we are living in a more technological age.

We hope this small snapshot of the reality of our lives will help those of you with the power to make these decisions understand that such decisions only further impoverish us.

The publisher is The Centre for Welfare Reform.

Disability Related Costs of Living © Micheline Mason and Mary Harrison 2012.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.