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).
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:
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.