Response to Public Consultation on Disability Living Allowance Reform

Sheila Gilmore MP

This is a personal contribution to the Consultation (not a party one) based on the
experience of my constituents.

Introduction

While it is never wrong to review benefits from time to time, to ensure they remain ‘fit
for purpose’, this consultation is taking place against the backdrop of a decision
already taken to reduce expenditure on DLA by £1bn. This is not mentioned in this
consultation document.

This leads to an assertion that support should go to those who ‘face the greatest
challenges’. There is little analysis of what those challenges are, nor an assessment
of where lower levels of support may be able to assist those with lesser levels of
disability. The latter may assist in preventing people becoming more dependent
either now or in the future – for example by being sufficient to enable them to be in
employment by being able to travel to work independently, or by enabling people to
remain in their own homes when they might not otherwise be able to do so.

Length and Timing of Consultation

A number of constituents have queried the timescale and timing of the consultation.
The Government Code of Practice is for ‘at least 12 weeks, with consideration given
to longer timescales where feasible and sensible.’ Further the period included the
Christmas and New Year holiday period. In the words of one constituent:

‘As a parent of a disabled child, I was shocked to learn that the government has
opened a public Consultation for proposed changes to the DLA system, and not
published it very well, and the timing suspect. Most special schools in Edinburgh
were closed for nearly 2 weeks at the start of December because of the poor
weather and then closed over the Festive period for nearly 3 weeks. Even if I did
know about the consultation it is very difficult to have spare time to read and respond
to 22 questions whilst looking after a special needs child!! It’s not very accessible to
people.’

Given the nature of the ‘customer group’ most affected by this Consultation, there is
a strong case for making this a longer than average consultation, rather than a
shorter one. There is also scepticism about the sincerity of consultation given that
the Welfare Reform Bill is due to be published within days of the closing date of the
consultation, which means that it will have been drawn up without reference to the
outcome of the Consultation.

Assessment & Review

Many of my constituents have a particular concern about the proposal for an
assessment by ‘an independent healthcare professional’. A great deal of this
concern arises from the experience of the tests applied to the ESA . One of the
common criticisms of my constituents is that the test was carried out in isolation from
the wider information about the individual and his or her medical background.
Information . The decision of the assessor appears to be accepted by the decision
maker without further reference to additional documentation.

One recent case from my constituency involved a man with a history of mental health
problems who was making a slow recovery, including participation in voluntary work.
His initial ESA assessment in 2009 yielded zero points and ESA was withdrawn. He
appealed the decision and six months later his appeal was successful finding him
entitled to 18 points. Benefit was reinstated. In April 2010 he was called for
reassessment and again the assessor gave him zero points. Again his benefit was
reduced and his appeal took 8 months to be heard. In December 2010 his appeal
was successful and ESA reinstated. He currently anticipates being called for another
assessment in April 2011. The difference between the assessment and the appeal
appears largely to have been due to the appeal tribunal considering other
documentation not used in the original assessment.

This is not, in my experience as an MP since May 2010, an isolated case. The

experience is stressful for claimants, which affects their health especially where
there have already been mental health problems. It substantially affects income and
although in the event of a successful appeal the ‘back money’ will be paid, such a
lengthy period between refusal and appeal, as illustrated by the above case, can
cause considerable financial difficulty.

The Harrington Report on ESA assessments highlighted this issue also, and
hopefully in future the assessment will include looking at other information than the
‘test’ itself . It is important therefore that the system adopted for DLA from the outset
learns from this experience.

Some element of an independent opinion is not unreasonable, rather than, say,

relying entirely on information from an individual’s GP but the test should not be the
sole criterion on which assessment is based.

The question of Review is closely related to that of assessment. Many of my

constituents have expressed concern about the prospect of being put through over-
frequent and unnecessary reviews. Many have ongoing disabilities and the need for
frequent review is not clear. It would be helpful if there could be greater clarity about
the purpose of review, and a commitment to not ‘over-reviewing’ as happens
currently with ESA, as illustrated in the example above. In the words of a constituent
with a disabled child:

‘The proposal to inflict regular assessments of claimants (16-64) particularly of those

with disability present from birth and lifelong is appalling. Those awarded DLA for an
indefinite period has been so for good reason. People with a lifelong disability such
as learning, physical, mental health impairment throughout their life. Having to
constantly justify their disability is both undignified and undermining.’

Assessment and reviews have considerable costs. Under the present rules there are many
appeals against refusal of DLA applications, and appeals can take many months to be heard.
Adding in regular reviews will further increase the strain on the tribunal process. ESA
appeals in Scotland are currently taking between 6 and 9 months. It is important to cost this
fully.

Definitions of Mobility

Paragraph 14 on page 13 states:

‘The definitions currently used are subjective and reflect views of disability from the
1990s, not the modern day. For example ‘mobility’ as currently defined concentrates
on an individual’s ability to walk, not their ability to get around more generally.’

This could signal an enhancement and widening of eligibility, or a restriction. It is not

clear which. If this means greater attention to non-physical fact ors which impede
mobility this would be positive. Examples would be those who can walk but whose
disability makes it unsafe for them to travel unaccompanied. However an alternative
interpretation might be that if an individual can ‘get around’ with assistance eg an
electric wheelchair or scooter, then they do not need the mobility element of the new
benefit. As noted above such aids to travel themselves require to be bought and/or
maintained. It is important that this is clarified.

Fluctuating Conditions

This is a major concern for many constituents. The Consultation Document says
very little about this, briefly outlining the problem without giving any indication of the
solution:

‘We know it is essential to ensure that the assessment adequately reflects the support needs
of variable and fluctuating conditions.’ (Para 26 page 16)

This has been a particular source of concern in the experience of people applying for
ESA. This was acknowledged in the Harrington Report. The lack of any detail here
will be a matter of considerable anxiety for many people currently receiving DLA.

The Activities to be Assessed

What will be crucial is what the assessment will contain. The Consultation Report
gives very little detail on this, other than saying it will be more ‘objective’ than the
current system. The examples given seem quite narrow and are indeed only a small
number of examples.

One constituent with MS shows the very wide range of needs and activities which
can be assisted by DLA:

‘Personally DLA allows me to pay for the heavy costs of living each day with this
chronic disease which in turn gives me the dignity and independence to pay for the
services I need and the extra costs incurred without having to burden family and
friends to provide the help and support I require.

I use my DLA to pay for various household chores that I cannot do i.e. ironing and
cleaning. I need my heating on much more to keep me warm as I am less mobile
and feel the cold terribly. When my husband is working away from home I buy ready
made meals for the microwave because I can manage this way by myself. I use my
DLA to pay for physiotherapy, chiropody and hair washing. If I am going out I need
transport and support from someone to help me negotiate stairs and other obstacles
that make getting around difficult’

Aids and Adaptations

Paragraph 8 of the Executive Summary states:

‘Successful use of aids and adaptations can increase an individual’s ability to lead a
full, active and independent life. We believe that Personal Independence Payment
should take greater account of aids and adaptations. We are considering how best to
take account of aids and adaptations in the assessment in a way that reflects how
they are used and paid for.’

The implications of this are unclear. Does this mean that DLA could be
reduced/withdrawn where an individual has aids or adaptations. Some aids and
adaptations are provided or funded by local authorities; some by charities, but a
number of people have used DLA to purchase aids and adaptations for themselves.
In Edinburgh the Council now operates a very high ‘threshold’ for eligibility. As a
consequence I have had a number of constituents contact me to say they have been
refused such adaptations as walk-in showers (or if owners refused grants for same).
The additional income from DLA can help some of them to save or borrow for
adaptations. Does this paragraph mean that people who do this will be deemed not
to ‘need’ DLA? Even if aids and adaptations are financed by a third party, many
people use DLA to pay for maintenance and/or replacement. One constituent (who
is in employment) told me that he has to replace his electric wheelchair every 6
years at a cost of approximately £6000, but without this his ability to remain in
employment would be reduced.

Linking People to Support

Paragraph 36 on page 20 states that:

‘we are exploring ways to help inform individuals of the positive steps they might take
to better manage or improve their situation if appropriate- for example by accessing
other forms of support in the health and social care systems. We are therefore
considering whether there are ways of doing so as part of the administration of the
benefit. There are a range of possible options, including providing guidance to
individuals on the options open to them; signposting them to the support available
elsewhere; or ensuring that they can discuss their situation with an appropriate
professional who would be able to offer advice and help them access specialist
support. We could potentially explore making elements of this part of the
requirements of the benefit, where appropriate.’

Once again if this is purely to provide additional advice , information and sources of
help it would be unexceptional , but it is unclear why there should be an element of
‘requirement’ and how that would be enforced. If an individual fails to ‘follow a
signpost’ would they have their benefit reduced? If there is support available would
this be a reason for paying the benefit at a lower rate?

Carers

Many recipients of DLA have relatives who act as their carers. This Consultation
Paper makes an extremely brief reference to carers (at Para 38 p 21) which itself
refers back to the previous consultation on Universal Credit in which the Government
said it was ‘considering whether changes to Carer’s Allowance will be necessary to
take account of the introduction of Universal Credit. ‘There is no indication of how
far this ‘consideration’ has progressed since last summer. Further, entitlement to
carer’s allowance is linked to the ‘cared for’ being entitled to the higher level of DLA.

Mobility Component in Residential Care Homes

The Government announced its intention to withdraw this from 2012 in the
Comprehensive Spending review, prior to issuing the current consultation document.
The intent is repeated in this document. (Para 21, page 15).

This withdrawal has been defended as achieving fairness as between hospital

patients and people in residential care. However this comparison is not appropriate.
Hospital stays are overwhelmingly to meet illness or surgical necessity and certainly
during such stays the patient will indeed not be able to make use of their mobility
allowance. The policy for many years has been to discharge people once possible
to home or residential care. Long term hospital stays, even for elderly people, have
become rare. The situation in residential care is very different, with people(some
young) being able to continue ‘normal life’, in some cases working or in education.
Mobility Allowance is important to assist this.

It has also been suggested that such needs are met by local authority care
packages, but for the most part this is not the case.
This change is misconceived, based on wrong assumptions, and should be
withdrawn.