Disability Living Allowance (DLA)

reform consultation

Submission by ecdp
February 2011
DLA reform consultation: ecdp response

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 Introduction

1. This is ecdp's response to the Disability Living Allowance (DLA) reform

consultation1.

2. ecdp is an organisation run by and for disabled and older people. Established in
1995 our origins are firmly rooted in a belief that the voice of disabled and older
people, both as individuals and collectively, is vital if the lives of disabled and
older people are to be enhanced.

3. Our vision is to enhance the everyday lives of disabled and older people in
Essex and beyond. We do this by:
• Actively involving and engaging with disabled and older people
• Delivering a range of high quality services, projects and programmes
• Working in partnership with a range of stakeholders in the public, private and
voluntary sectors
• Shaping and influencing strategy, policy and practice
• Creating a professional, effective and efficient organisation that can and
does deliver.

4. We provide a wide range of support, information, advice and guidance services,

primarily in the field of social care. We currently2 provide Direct Payment /
Personal Budget support services to approximately 3,900 clients in 3 services
across 4 local authority areas. We are also closely involved in the design and
delivery of the Right to Control Trailblazer in Essex. As an organisation we have
43 staff, approx £1.7m turnover, nearly 190 volunteers and approximately 1,700
members of all ages and impairment groups.

Structure of this response

5. This document forms ecdp's organisational response to the Disability Living

Allowance (DLA) reform consultation. It is based on the views and lived
experiences shared with us by our members and clients3 as well as the wider
population of disabled people in Essex and beyond.

1
http://www.dwp.gov.uk/consultations/2010/dla-reform.shtml
2
As of December 2010
3
See results of ecdp’s survey on DLA and ILF, available here:
DLA reform consultation: ecdp response
http://www.ecdp.org.uk/home/2010/7/23/results-of-ecdps-survey-on-dla-ilf.html

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6. In terms of individual responses, we have encouraged people to submit their
views and experiences to other consultations on the DLA reforms - for example
Disability Alliance's survey4 and Mencap's work5 - and supported those
organisations where we can to analyse those responses.

7. There has been a significant level of interest in the proposals contained within
the DLA reform consultation. Rather than repeat points that have been made
elsewhere and in greater detail, we cross-reference where appropriate to
consultation responses by other organisations and individuals.

8. As such, this response concentrates on particular issues ecdp feels are either
especially important or have not been covered in as much detail elsewhere -
both favourable and those we feel need more consideration.

9. Finally, the points made within this response don't correlate to the specific
questions posed within the DLA reform consultation document. Where they
relate to specific questions or points raised within the consultation, these are
appropriately cross-referenced.

10. Note: for simplicity we refer to "DLA" throughout this document, though
recognise it is being updated to become the "Personal Independence Payment"
(PIP).

4
See http://disabilityalliance.org/dlatest.htm
DLA
5
Seereform consultation: ecdp response
http://www.mencap.org.uk/page.asp?id=20515

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 DLA reform: favourable elements

11. Though there are a number of areas within the consultation that are
unfavourable, it should be noted that there are four areas that we consider more
favourably. These are outlined below.

12. The first is that, having been introduced in 1990 (through The Way Ahead white
paper) and implemented in 1992, we recognise that DLA is a system of support
for disabled people that is in need of updating. Large parts of the system,
particularly at assessment and review stages, create stress for those going
through it; furthermore, inconsistency and a lack of transparency in the way
eligibility is determined for DLA means it remains one of the benefits disabled
people can access most shrouded in uncertainty. At a time of re-looking at the
public finances, giving consideration to a benefit which costs £5.487bn for 16-64
year olds (2009/10 figures, from the Dilnot Commission6) seems appropriate.

13. The second is that DLA is being maintained as a non-means-tested, non-

taxable, non-NI contributions dependent benefit, and also that it will continue to
be recognised as a "passport" to many other publicly-funded benefits and
services. Reforms of this size and scope often have unintended consequences,
especially when interlinking aspects of the benefits system are involved.
Recognising this complexity, we advise the following:

13.1. Those engaged in assessing the impacts of DLA reform undertake

specific work to fully map out and mitigate adverse effects of these impacts

13.2. In the introduction of the new benefit, any knock-on impact of any
changes in a person's circumstances arising from review are specifically
considered

13.3. A transition phase for an individual to be able to manage any change in

circumstances after the outcome of their review is considered.

14. Aligning assessments across benefits, health and social care (plus other key
areas of social policy, such as employment and housing), and sharing
information (with appropriate permission) across professionals about those
assessments, has the potential to be a considerably favourable element of

6
Dilnot Commission Call for Evidence, available here:
DLA reform consultation: ecdp response
http://www.dilnotcommission.dh.gov.uk/files/2010/12/1.1-Call-for-Evidence-FINAL-pdf.pdf

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 these reforms. This holds both for individuals experiencing the assessment
process and to streamline administration. There are clear parallels in this
intention with the existing Right to Control (of which Essex is a Trailblazer) and
we would welcome the opportunity to share experiences of the Right to Control
work so far to inform the DLA reform work.

15. The fourth and final key area we find broadly favourably is the detail of aligning
the definition of those who are potentially eligible for DLA into line with the legal
definition of disability (as per the Equality Act 2010). This consistency has an
element of common sense, and the particular mechanism for making it possible
(that an individual will have had to have an impairment for a Qualifying Period of
6 months and pass the Prospective Test of a further 6 months) seems a
reasonable compromise. This is particularly so since (a) current practical
experience of the DLA application process suggests this sort of timescale
elapses before support through DLA is available; and (b) initial care and support
for the Qualifying Period should be provided appropriately in a health or social
care setting.

DLA reform consultation: ecdp response

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 DLA reform: areas for further consideration

16. As to be expected in a consultation outlining such a significant reform to a

benefit that provides such a vital support to a large number of people, there are
a number of areas within the consultation that we would like to see given further
consideration.

17. There has clearly been a significant level of interest in the proposals contained
within the DLA reform consultation. Rather than repeat points that have been
made elsewhere and in greater detail, this response concentrates on four
particular issues ecdp feels are either especially important or have not been
covered in as much detail elsewhere.

18. The first issue is "cost shunting" - shifting public expenditure away from DLA
monies and to public budgets elsewhere - which manifests itself in two specific
ways.

19. The first manifestation has attracted a significant amount of attention: the
removal of the mobility component for people in a residential setting (see, for
example, Don’t Limit Mobility – a report produced jointly by some 26 disabled
people’s organisations7). Though this may seem to address an issue of a
“funding overlap” with local authority provision, it - unfortunately - doesn’t, since
regrettably local authorities do not (in general) meet their obligations in this
area. Even if they did, this proposed reform would in the main shift the costs of
meeting an individual's mobility requirements on to local authorities, where
there are already significant worries about levels of provision, tightening
eligibility criteria and increased charges for community services, causing much
anxiety as to whether councils could continue to meet their obligations.

20. One potential solution to this is to embed a requirement to meet an individual's

mobility requirements via the commissioning and procurement arrangements
between residential care providers and local authorities. We believe this has
two flaws.

21. The first is that it presents a harmful chance of increasing transaction costs
between providers and commissioners, which would inevitably be reflected in
charges to service users and councils. This specifically counteracts our
understanding of the factors currently driving relationships between providers -

DLA
7 reform
Don’t Limitconsultation: ecdp here:
Mobility, available response
http://www.mencap.org.uk/document.asp?id=20622

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 particularly in the private/independent sector - and commissioners, relating to
no growth (or even slightly reduced) contract values but guaranteed high
volume solutions to offset reducing budgets.

22. The second flaw is that evidence suggests8 provider responses to market forces
arising from personalisation are distinct by impairment groups. For example,
older people are considered by some providers as being “not capable” of
exercising choice and control within the market. Such variation is a cause of
considerable worry.

23. Overall, we therefore find value in the concern the mobility component proposal
affecting residential settings has attracted, and request it is withdrawn from the
reforms.

24. The second manifestation of cost shunting is through assuming aids,

adaptations and equipment are now part of the general landscape of provision
for disabled people. In fact they are not, in the sense this landscape has been
created by the presence of DLA and other benefits over a number of years. If
the assumption of an existing landscape - rather than one underpinned by
supports such as DLA - prevails, then the ultimate cost of providing equipment
will have to have been met from somewhere, and this could equally be NHS,
social care or private money. As such, if an identified need isn't met at the
earliest opportunity - which DLA often represents - then the costs of meeting a
later need could potentially become bigger, but for a different budget.

25. Coordination between different departments, both at a central and local level,
can be difficult; if this element of the DLA reform proposals continues, then we
would seek reassurance that coordination between DWP, DH and local
government (as social care) as a minimum is in place.

26. We are concerned that, by focusing DLA on people with the highest needs, this
reform risks essentially turning DLA into a health and care budget by proxy,
rather than focusing on those people with the highest costs. Our second issue is
therefore that DLA could in effect become a kind of ILF-by-proxy. Evidence
suggests there is not a direct correlation between people’s need for care and
support and their disability-related costs9. We would thus hope the proposed
reforms can retain the original focus of DLA on meeting additional costs rather

8
See the results from the first round of the longitudinal study here:
http://www.ecdp.org.uk/longitudinal-study/
9
Counting the Cost, Demos. Available here:
DLA reform consultation: ecdp response
http://www.demos.co.uk/publications/countingthecost

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 than meeting highest needs (and on which please see paragraphs - in
particular).

27. The third issue we would like to see be given more consideration is the role of
self-assessment in the reformed system, on which there is currently a mixed
picture within the consultation. Self-assessment within social care (with its
considerably larger public budget) is becoming further established and evidence
suggests that it leads to both better outcomes for service users10 and better use
of public resource11. As such, we would like to see this provided for in both
assessments and reviews in the new system. Not only would this help directly
with the administration of the system, but would go some way to establishing a
sense of trust between service user and government.

28. The final - and potentially most important - issue we'd like to see given further
consideration is one of trust. The DLA reform consultation has given rise to a
considerable number of strong reactions12. We think the overall debate about
DLA and the role of disabled people in society more generally could be
improved if all those with an interest play their part in a positive and constructive
debate.

29. On the side of government, we suggest the following would be most useful:

29.1. Give sufficient acknowledgement of the fraud rate for DLA. In 2009 it
stood at 0.5% - a rate significantly lower than Income Support (2.9% fraud rate),
Incapacity Benefit (1%) and Jobseekers Allowance (2.8%). This rate is also
lower than the administrative error rate for the DWP, which stands at 0.6%.

29.2. Give some consideration to what the rate of appeal implies. At present,
50% of DLA claims are rejected, but 54% of appeals are upheld. This suggests
both an issue with how DLA is perceived by those applying for it and with the
quality of the initial decision making process. We recommend that findings and
analysis from the independent appeals process is taken into account by the
DLA reforms, since it represents a significant opportunity to shape any new
assessment and prevent in future typical issues that arise.

29.3. It would be useful to have clarity over what age groups are being affected

10
Personalisation: A Rough Guide from SCIE, available here:
http://www.scie.org.uk/publications/reports/report20.asp
11
Personalisation, Productivity and Efficiency, from SCIE, available here:
http://www.scie.org.uk/publications/reports/report37.pdf
DLA
12 reform
See, consultation:
for example, ecdp response
the Broken of Britain: http://thebrokenofbritain.blogspot.com/

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by the proposed reforms, and particularly whether they will be extended - or not
- to young people under the age of 16 and older people over the age of 65.
Particularly given the correlation of impairment with age13 and the relationship
between DLA and Attendance Allowance, understanding any intention for
reform at the earliest opportunity provides the best chance to engage with it and
work in partnership to shape it.

13
See Life Opportunities Survey: http://odi.dwp.gov.uk/disability-statistics-and-research/life-
DLA reform consultation: ecdp response
opportunities-survey.php

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 Reducing the costs of disability

30. Thinking of both DLA in the past and in the future, its common feature is that it
seeks to provide support to an individual because of the additional costs of their
impairment.

31. When DLA was first introduced, the average costs for disability-related
expenditure was between £4.55 and £12.53 a week14. There is currently
significant variation at the moment in estimated costs associated with disability,
from between £7.24 to £1,513 per week. Given the highly personalised nature
of most impairments and their effects on the individual and people around them,
it is very difficult to generate average figures for such costs. Indeed, the
variation increases as complexity of impairment/circumstances increase. It is
also extremely difficult to identify one or two proxies for disability-related costs
that would reasonably correlate to overall costs.

32. As such, DLA and the current reforms focus on the demand-side of the
equation, i.e. the requirements of the individual.

33. We take the view that this can only therefore be one part of the solution.

34. However, amongst other areas (e.g. employment, transport and housing) we
feel there is considerable room to influence, shape and drive down the
additional costs relating to disability on the supply-side of the market.

35. For example, provision within the social care market in response to the
personalisation agenda and Personal Budgets / Direct Payments is relatively
slow. However, significant market-shaping work continues to accelerate, and
learning from this is available that could benefit wider provision of goods and
services beyond a social care and health setting.

36. We thus feel there is a significant opportunity to be taken up to do more market-

shaping work in the time leading up to the introduction of a reformed DLA
system that can both drive down costs relating to disability on the supply-side
and potentially stimulate an increase in disability-related business activity.

DLA
14 reform
From The consultation:
Way Ahead, ecdp
1990 response

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 Summary of suggestions and
recommendations
Throughout this response we have made a number of constructive suggestions
and recommendations to be considered in taking forward any reforms to the
current DLA system. For convenience, these are reproduced below (the
paragraph numbers represent their original place in the document above).

S1. Recognising the complexity of reforms of this size and scope, we advise the
following (paragraph ):

S1.1. Those engaged in assessing the impacts of DLA reform undertake

specific work to fully map out and mitigate adverse effects of these impacts

S1.2. In the introduciton of the new benefit, any knock-on impact of any
changes in a person's circumstances arising from review are specifically
considered

S1.3. A transition phase for an individual to be able to manage any change in

circumstances after the outcome of their review is considered.

S2. We would welcome the opportunity to share our experiences of the Right to
Control work so far to inform the DLA reform work, particularly in aligning
assessments across several public policy areas (paragraph ).

S3. We find - for several reasons - value in the concern the mobility component
proposal affecting residential settings has attracted, and request it is withdrawn
from the reforms (paragraph ).

S4. If the assumption remains that aids, adaptations and equipment are now part of
the general landscape of provision for disabled people, we would seek
reassurance that coordination between DWP, DH and local government (as
social care) as a minimum is in place (paragraph ).

S5. We would like to see self-assessment provided for in both the assessments and
reviews stages of the new system, reflecting evidence of its beneficial outcomes
for both individuals and public budgets (paragraph ).

S6. Trust is a significant element of these reforms, and all those interested in this
reform andconsultation:
DLA reform the role of ecdp
disabled people in society more generally can play their
response

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 part in a positive and constructive debate. On the side of government, we
suggest the following would be most useful (paragraph ):

S6.1. Give sufficient acknowledgement of the fraud rate for DLA

S6.2. Give some consideration to what the rate of appeal implies

S6.3. Provide clarity over what age groups are being affected by the proposed
reforms, and particularly whether they will be extended - or not - to young
people under the age of 16 and older people over the age of 65.

S7. We feel there is considerable room to influence, shape and drive down the
additional costs relating to disability on the supply-side of the market. We would
thus like to see more market-shaping work to both drive down costs relating to
disability on the supply-side and potentially stimulate an increase in disability-
related business activity (paragraph ).

Response submitted February 20011. For further information on any element of

this document, please contact Rich Watts (Director of Policy & Development,
ecdp) on rwatts@ecdp.co.uk or 01245 392 324.

DLA reform consultation: ecdp response

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