Papworth Trust is a disability charity and registered social landlord,... disabled people to have equality, choice and independence. Papworth Trust... Papworth Trust’s response to the Disability Living Allowance reforms

Papworth Trust’s response to the Disability Living Allowance reforms
Papworth Trust is a disability charity and registered social landlord, whose aim is for
disabled people to have equality, choice and independence. Papworth Trust helps
over 17,000 people every year through a wide range of services including
employment, vocational rehabilitation, housing and personal support.
Papworth Trust welcomes the opportunity to respond to the Government’s proposals
to reform Disability Living Allowance (DLA). In drafting our response, we engaged
with disabled people to find out why DLA is important to them, what activities help
them to lead an independent life and to ask for their reaction to the reforms
We have been encouraged to learn that the Personal Independent Payment (PIP)
proposes a much simplified system and better recognises the additional costs faced
by disabled people. Over the past year we have been particularly concerned by the
high levels of fuel poverty amongst disabled people and we urge the Government to
include a heating element as part of the new PIP.
The barriers faced by disabled people
Papworth Trust’s aim is for disabled people to have equality, choice and
independence in their daily lives. As part of our mission, we engage with disabled
people to establish what choice and control they currently have in their lives, what
choice and control they aspire to have to live their lives as they wish and to better
understand the barriers they face.
Whilst disabled people tend to feel they have choice and control in their lives at
present, they are often faced with barriers. For the young disabled people, some say
they are constrained in their freedom by parents/families – for example, not being
allowed to go out with friends at night. For others, it is felt that society as a whole
placed restrictions on disabled people – for example, they believe they face
prejudice when informing a potential employer or others that they have a learning
disability. In essence, the barriers that prevent disabled people from participating in
society tend to emanate from monetary or societal pressures.
The additional costs faced by disabled people
“My son requires the heating to be on for 24 hours a day for the majority of the year
because of his condition” said one respondent.
Research shows that:
low income is one of the strongest indicators of fuel poverty1,
disabled people are twice as likely to live in poverty than non-disabled
people2, and
Leonard Cheshire, January 2009: Fuel Poverty and Disability
Leonard Cheshire, January 2009: Fuel Poverty and Disability
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disabled people are likely to be highly susceptible to the effects of a cold
house and are more likely to need to heat their homes for longer3.
Papworth Trust urges the Government to recognise this problem and include an
element which recognises additional heating costs as part of the new PIP. Given the
sharp rises in energy prices witnessed last year combined with a harsh winter, we
believe financial assistance needs to be targeted at helping this group as a matter of
Passport to other benefits
As outlined above Papworth Trust urges the Government to introduce a heating
element as part of the new PIP. At the very least, we would like to see higher rate
claimants of PIP entitled to the winter fuel payment. Over the last year, Papworth
Trust has been campaigning for winter fuel payments to be extended to severely
disabled people. For administrative ease, we look at those people who are claiming
the higher rate components of the Disability Living Allowance. We believe this is fair
as a lack of wider service provision (e.g. accessible transport) often means that
disabled people find themselves at home for longer periods of the day, and are
therefore faced with higher energy bills as a result of heating their home. We urge
the Government to use this opportunity to alleviate the financial burden this presents.
Automatic entitlement and review
Papworth Trust asked disabled people whether they believe any group should
receive automatic entitlement to PIP, and what would be the appropriate length of
time for periodic review. As the Government might expect, we received a variety of
responses. However there was unaminous agreement that people who were born
with a disability should receive automatic entitlement.
Improving the application process, support and IAG
In designed the PIP application process, Papworth Trust believes that lessons can
be learned from the reviews that have taken place over the last year on the Work
Capability Assessment (WCA). The experience from people going through their
WCA has shown that better upfront support is needed to claimants when filling their
forms and in particular when they are called for assessment. In the past notifications
for assessment have been sent out without warning and no further support is offered
to help individuals to prepare for the process. Under circumstances where a claim is
rejected, individuals are given no indication of what support can now be given or
what other benefits or support they might be entitled to. We feel this causes
unnecessary anxiety to vulnerable people. In future, we believe there needs to be
better signposting towards a person or organisation who can help them understand
why their claim was rejected or who can provide assistance in other ways.
It is imperative that people are provided with the appropriate information, support
and advice in order to allow them to make a fully informed choice. At present, we
believe there is help and support available to help disabled people do so. Through
our own research on information, advice and guidance, we have found that whilst
Department for Energy and Climate Change, Warm Home Discount consultation, December 2010
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there is a great deal available, it is often produced in an inaccessible way and people
are not given the appropriate level of support to access it.
Given that individuals will have differing and often complex needs, support will need
to be personalised in order to reflect this – the system needs to have advisors in
place with sufficient expertise to help guide and inform disabled people in a manner
that is accessible to all. In a situation where the user may have limited capacity, the
information will need to be delivered in a way that is simple enough to enable their
carers and advocates to navigate the system.
Independent assessment
“My disability is rare and often is a hidden disability. As long as an independent
person has an open mind to the assessment, and is not looking to fit my disability
into a box then I have no problem with this.” said one respondent.
In principle Papworth Trust supports the idea of an independent assessment, but
lessons must be learned from the WCA process. In addition there needs to be
sufficient weighting given to evidence from a claimant’s GP in the process.
“My doctor knows more about my needs than someone who is independent.” said
one respondent.
Papworth Trust has been concerned about the outcomes of the WCA which suggest
it is a flawed assessment. The experience we have heard from disabled people has
been that the WCA is too focussed on a person’s physical capability, and needs to
recognise the barriers faced by people with learning disabilities, mental health
issues, fluctuating and seasonal conditions. To ensure these same problems are not
repeated in the design of PIP, we recommend assessors are provided with intense
training on working with people with learning disabilities and mental health issues.
The role of a GP is imperative when assessing a person with a fluctuating condition,
an independent assessor might not understand how a person’s condition fluctuates
on a daily basis and the impact this might have on their daily life.
There is often a perception that if GPs and healthcare professionals are involved in
the process it will create additional pressures on their time. Through our experience
to date with particular reference to the WCA process, Papworth Trust has found that
the opposite is true and doctors are happy to intervene to correct poor decisions.
Reporting changes
Papworth Trust believes the Government needs to make it easy for people to report
any change in circumstance and that it makes clear what changes you must tell them
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Other issues - removal of the mobility component for people living in
residential care
Papworth Trust is opposed to the removal of the mobility component for people living
in residential care. Research by Mencap4 does not support the Government’s
justification that mobility support is double-funded. We are opposed to the removal of
the mobility component of DLA for people living in residential care. Evidence
collected by our organisations does not support the Government’s justification that
mobility support is double-funded. We share their concerns that this is a regressive
step which will deny 80,000 people their independence and limit their participation in
community life.
Case Study – impact of the removal of the mobility component from residential
Matthew is autistic and lives in residential care. One day a week he attends a day
centre in Ipswich; using a mixture of taxi’s and public transport, he spends £8.80
each way to get to the centre. In addition to his activities at the centre, he has a
voluntary job. By withdrawing the mobility component of Disability Living Allowance
to people living in residential care, Matthew will be faced with having to live on
£22.36 a week.
Whilst the mobility component was never designed to do so, the reality is that this
component is incorporated with other benefits to pay for people’s daily living
expenses. The mobility payment is not a benefit to rely on for everyday living, but we
believe it provides a lifeline to independence. We urge the Government to reconsider
this proposal.
For further information, please contact:
Nicola Whiteman, Policy and External Affairs Manager
Tel: 01480 357205, Email:
Mencap et al, Don’t limit mobility, January 2010
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