Personal Independence Payment Initial Draft Of Assessment Regulations Disability

personal independence payment: initial draft of assessment regulations disability benefits consortium comments june 2011 the disab

Personal Independence Payment: initial draft of assessment regulations
Disability Benefits Consortium comments
June 2011
The Disability Benefits Consortium (DBC) is a national coalition of
over 50 charities and other organisations committed to working towards
a fair benefits system.1 Using our combined knowledge, experience and
direct contact with disabled individuals, people with long-term
conditions and carers, we seek to ensure that government policy
reflects and meets the needs of all disabled people.
1. Introduction
We welcome the opportunity to feedback on the draft criteria before
testing this summer. We hope that our proposed changes can be
incorporated into the assessment before the testing begins.
However we believe that the publication of draft regulations just one
day prior to discussion in the Welfare Reform Bill Committee stage
limited the opportunity for a full discussion in Parliament. We feel
that this adds strength to our call for affirmative rather than
negative resolution procedure for the regulations, to allow for full
and proper Parliamentary scrutiny of the plans for the new PIP
assessment.
2. Period Condition
The regulations include the intention to extend the qualification
period for PIP from the three months currently applied to Disability
Living Allowance to six months. We remain concerned that this
extension will push many disabled people into debt and place an extra
burden on both individuals and families.
PIP is intended to provide cash help to support disabled people to
lead full, active and independent lives by supporting them with the
additional costs they experience as a consequence of their impairment
or health condition. Making people wait longer will place further
burdens on those adjusting to sudden onset conditions such as stroke,
or people who experience the immediate debilitating effects of
treatment such as cancer, as well as penalising those whose impairment
or condition has gradually worsened over a period of time and have
already had to deal with additional costs prior to passing the
threshold for PIP. To require additional costs to exist for six months
before offering any financial assistance will push even more disabled
people into debt. This could also mean that no-one with severe
depression receives DLA, as depression usually lasts for six months at
a time and people then experience relapses for similar lengths of
time. During this period they could face substantially higher costs,
e.g. transport for loved ones to accompany them or high phone bills
due to increased number of calls to friends and family for support or
to support lines.
The briefing notes suggest that “where disability-related costs do
arise early on, for instance as a result of having to make frequent
hospital visits for treatment, additional support mechanisms provide
an element of coverage before the qualifying period is satisfied”.
However, these suggested alternative sources of funding are not
available for all disabled people eligible for PIP. Many are
means-tested or available only to those out of work. In the case of
hospital car parking, there are large variations in charges levied
across Trusts and concessionary rates (where they do exist) are often
not advertised as well as they should be.2 Doubling the qualifying
period to six months will therefore leave many disabled people without
any source of financial support to help with the additional costs they
face.
The Government has expressed a desire to align the qualification
period for PIP with the one year definition of disability included in
the Equality Act. We propose that this instead be achieved through
maintaining the qualification period of three months but extending the
period of future need from six to nine months. However, exemptions
would be needed to ensure groups with serious conditions such as
cancer are not excluded from PIP, and to ensure that people with
long-term and fluctuating conditions who may struggle to satisfy the
period conditions are not penalised.
3. Draft Criteria
A more holistic, multidimensional approach to assessing the additional
costs and barriers to participation experienced by disabled people
would be far better than the tick box methodology that has been
proposed. However, given the Government’s preference for this
approach, we have developed our own alternative criteria which we
believe would assess the wider range of activities necessary to lead
an independent life and provide a more accurate measure of the
additional costs faced by disabled people, which we will be submitting
to the DWP shortly as an Appendix (DBC briefing alternative PIP
criteria3). We also wish to comment on some broad concerns regarding
the DWP’s proposed assessment, as well as the detail of the proposed
descriptors.
3.1 General comments
The Minister has stated several times that the Government is committed
to PIP supporting participation and enabling disabled people to lead
independent lives, and that the new benefit will be about promoting
independence and social inclusion.4
However, we are concerned that the draft criteria focus only on those
activities required for the bare essentials of existing and will fail
to help disabled people overcome the barriers many face to living
independently and participating fully in society. The proposed
descriptors seem to address a much narrower range of issues than DLA
currently does. For example, the current DLA asks about things you
would like to do and support you would need for that, including the
ability to engage in a reasonable amount of social activities.
Example: Person with Ulcerative Colitis:
“I very rarely go out socially. I might have been throughout the year,
one or twice, you know. Christmas time, but other than that, no. My
friends just don’t understand and think I’m making excuses – the
social isolation is one of the worst things about living with
Ulcerative Colitis.”
While we welcome the Government’s commitment to developing an
objective assessment, we are still concerned that it remains very much
a medical test with “a strong focus on care and mobility” as well as
“the impact of a health condition or impairment on an individual’s
ability to participate”. The technical note on the draft criteria
states that the Government has attempted to identify proxies for an
individual’s ability to participate in everyday life, and asserts: “We
believe that the most effective means of determining entitlement is to
assess proxies for the impact of a health condition or impairment on
individuals, including additional costs arising from disability.”
However, the proxies chosen continue to focus on care and support
needs, rather than the additional costs encountered by disabled people
in everyday living. There are repeated references to whether someone
can undertake an activity without assistance or prompting. In
opposition to the Government’s justification for the introduction of
the benefit, therefore, the criteria seem to be designed around the
medical model of disability, rather than the social model. They look
predominantly at the medical impact of an individual’s impairment
rather than how this interacts with society to create barriers to
independence.
We do not believe that measuring any single factor, such as the need
for support in basic functional tasks, is an accurate proxy by which
to calculate the cost drivers of living with an impairment or health
condition, as shown by the recent research by Scope and the think tank
Demos. We strongly recommend strongly that wider social and
environmental factors must be included within the assessment, to
ensure that it accurately measures the additional disability costs
which present barriers to participation. Examples include the high
costs of heating, water or other utilities, transport, telephone
costs, delivery costs, clothing, bedding or other aids and
adaptations, and prescriptions and other complementary therapies. We
are deeply concerned that, without factoring in these issues, many
disabled people – particularly those who have high disability costs
but who may be assessed as having low impact of impairment – will not
get the support they need and could be pushed deeper into poverty.
Alternatively, accounting for key social and environmental drivers of
a disabled person’s disability costs could pave the way for a more
sustainable solution to reducing these costs and addressing disability
poverty over the long term. An assessment that flags up social factors
– like costs incurred from living in unsuitable, inappropriate
housing, for example – would highlight areas where extra support from
statutory and non-statutory services would be greatly beneficial. For
example: an individual who is assessed as having high disability costs
as result of living in poorly adapted and unsuitable housing may have
their information passed on to the best appropriate housing services,
which could then look into ways of making the necessary adjustments to
reduce these extra costs and make their accommodation more suitable –
and thereby reducing their disability-related costs in this area.
Finally, while we appreciate the Department’s concerns about
developing a more multidimensional test that is too complex and
expensive to administer we would suggest that there are lessons to be
learnt from social care assessments, which are used widely and
successfully throughout the sector.
Points
The draft assessment provides no indication of the points award for
each of the criteria. Without these it is impossible to ascertain the
thresholds being proposed for PIP at the standard and enhanced rate.
We welcome the Government's intention to trial PIP, and engage in
further consultation, producing a second draft of regulations in
October. However, PIP clauses in the Welfare Reform Bill were debated
in Committee on the basis of regulations which make it far from clear
as to who will, in future, qualify for the benefit, and therefore what
the impact will be on disabled people. The lack of information on
scoring makes it particularly difficult to comment on the draft
criteria and effectively engage with the consultation.
Fluctuating conditions
There is nothing in the criteria (or in the regulations) that would
act as a prompt to ensure that individuals must be able to undertake
an activity repeatedly, reliably and safely, despite this being
mentioned in the accompanying information. Evidence collected from the
Work Capability Assessment demonstrates that such considerations are
not taken properly into account if not on the “face” of the test.
For example, an individual must be able to do more than cook one
simple meal – they need to be able to cook at least three simple meals
per day. Someone whose condition fluctuates may be able to cook a meal
for breakfast, but find that they struggle with cooking evening meals
due to fatigue. We therefore recommend that the wording of
‘repeatedly, reliably and safely and without significant pain, fatigue
or distress’ should be included expressly within each descriptor.
Accompanying guidance should explain what is meant by ‘repeatedly’ in
the context of each activity (such as cooking at least three simple
meals throughout the day, managing their medication throughout the day
at appropriate intervals and frequency for their condition, and
washing and bathing as frequently as necessary – someone with
continence problems for example may need to wash and change on a
frequent basis throughout the day, or someone with Crohn’s or Colitis
may need frequent help throughout the day with their toilet needs.)
We believe that, in order to fairly and accurately assess the impact
of a fluctuating condition, the applicant needs to be asked about the
frequency, severity and duration of their condition. It may be that
such a measure is tagged onto the assessment as a separate descriptor
or it could be integrated into the descriptors themselves.
Moreover, someone who can’t undertake an activity for, say, 3 months
per year is still living with significant disability. We would like to
know what the Government’s evidential justification is for choosing 6
months, and would recommend that consideration should be given to
awarding some lower level of points to people with a long term
condition who experiences significant difficulties for some of the
time (for example 3 months of the year).
Finally, the overuse of the word “continual” in the PIP criteria gives
the impression that someone would have to be in continual contact with
the person, not just for the activity. The way DLA is worded appears
much better in relation to the amount of time you might need or the
frequency of assistance/prompting you need. The use of ‘continual
assistance’ or ‘continual prompting’ versus ‘intermittent assistance
or prompting’ will be difficult to interpret and apply, and fails to
understand the reality of the support that people need.
For example, someone with a visual impairment may be able to follow a
journey relatively independently, but require assistance with
pedestrian crossings, hazards or unpredictable incidents. So any
amount of necessary assistance should be considered “continual”.
Similarly, someone may only require assistance getting in or out of a
bath or shower in order to wash or bathe, or supervision in case of
falling, rather than continuous assistance throughout the process, but
would nevertheless need to pay for a carer’s presence for the whole
time of bathing.
The definition of ‘prompting’ should also be widened to include other
forms of communication such as telephone or e-mail rather than simply
the physical presence of a person. This would be more conducive to
promoting independence while still taking into account situations
where carers, family and friends may prompt people to eat or bathe, or
assist with planning shopping lists and budgeting using other means of
communication.
Sensory impairments
The DBC is concerned that the draft assessment fails to accurately
address the needs of people with sensory impairments (hearing, visual
and dual sensory impairments).
At the moment the impact of sensory impairments is specifically
recognised in primary and secondary legislation on DLA and we are
concerned that by failing to specifically address sensory needs in the
new PIP assessment many people with a sensory impairment will be
denied the support they need.
In addition, it is important that ‘intermittent/ continuous
assistance’ are interpreted broadly to cover the support that people
with sensory impairments may need, including, for example, reading
cooking instructions when preparing a meal, or locating toilet
facilities and orienting themselves in a bathroom or cubicle in order
to manage toilet needs etc.
The draft assessment also makes assumptions around an individual’s
adaptation to their condition. In many cases, the reality will be that
as people are taught independent mobility skills and build their
confidence, their costs will go up, as they seek to participate in the
community, and therefore travel around more. Likewise, whilst people
with hearing loss may attain communication skills, they cannot be
considered as evidence of the individual adapting to their condition
if they cannot use these skills to communicate effectively with other
people reliably and repeatedly.
In June 2010, celebrating extension of the higher rate mobility
component to severely sight impaired people, Maria Miller said "The
Coalition Government is committed to making sure that help gets to the
people who need it. We've taken steps today to extend the higher rate
mobility component of Disability Living Allowance to severely visually
impaired people from next April. This will mean that around 22,000
people will get an additional £30.90 a week, giving them greater
independence in their everyday work and home life." It seems illogical
that just a year after this announcement a new assessment is being
proposed that risks denying the same group of people the support they
need.
Aids and adaptations
We welcome a commitment to recognise that those who rely on aids and
adaptations nevertheless face barriers, by awarding some points to
individuals who can complete activities only with the assistance of an
aid or appliance in some activities.
We welcome also that the assessment will only take into account aids
or appliances that are normally used by an individual, rather than any
that might potentially help them. We note also that the presence of an
aid or adaptation does not imply its usefulness. For instance, some
people with hearing aids may only gain a small benefit from them and,
in the case of people with tinnitus, the use of the hearing aid to
counter hearing loss may exacerbate the tinnitus.
However, it is important that those who have significant reliance on
aids and adaptations, such as a wheelchair, still obtain enough points
to qualify for PIP, in recognition of the limitations and extra costs
that such reliance may bring.. We are particularly concerned that the
barriers created by reliance on mobility aids, such as a wheelchair,
are not adequately recognised in the current draft of the assessment
for the mobility component (please note our concerns on specific
descriptors, below). In addition, clarification is still needed on
when an appliance replaces or provides a cognitive function such as
memory through an electronic reminder device, and when these will be
taken into account, for example in managing medication (activity 4).
The use of another person (support worker) must only be considered to
be an aid or adaptation when they are constantly present. For most
people in need of communication support, this is only available for a
small proportion of the time. Indeed, extra-costs benefits are vital
for people looking to fund such support.
3.2 Daily Living Activities:
*
Planning and buying food and drink
The descriptor takes a narrow approach, looking at only mental,
cognitive and intellectual ability to plan and buy food and drink,
‘including any food or drink necessary for therapeutic diets’.
However, it neglects to take into account the additional costs that
disabled people may face in maintaining a healthy diet to manage their
condition. For example, people with HIV may face prohibitive costs in
buying the quality and quantity of fresh food and supplements that
they may need to fight off infections and manage gastro-intestinal
problems associated with medication. Similarly, people with
intolerances or allergies may need to buy specialist foods, or may
need to modify their diet to avoid certain foods or food additives.
Meeting such dietary requirements often costs more.
We recommend that this descriptor should be broadened to ‘planning and
buying appropriate food and drink’, allocating some points to those
with special dietary needs which increase costs. If it is not deemed
appropriate to consider this issue under this heading, we have
suggested in our alternative descriptors that Activities 4 and 5
(managing medication and monitoring health conditions, and managing
prescribed therapies other than medication) could be expanded to the
broader heading of managing conditions and maintaining health, which
could include obtaining appropriate food, drink and supplements.
Example: Current DLA recipient:
"It costs more for myself as I have to buy certain types of food due
to intolerances and allergies."
Although we welcome that mental health barriers to planning and buying
food and drink are included in the criteria, it could go further and
more explicit wording might be necessary. Motivation as a factor is
included in Activity 2 but is not mentioned here, where it is equally
appropriate. Obsessive behaviour and paranoia about possible
contamination of food could also impact on the ability to buy and plan
food. We recommend the criteria also include ‘disordered thinking’ and
not just depressive illness in the notes.
Disabled people may also face additional costs in obtaining food and
drink due to physical problems, such as problems with mobility or
sensory impairments, yet this is neglected by this descriptor, which
focuses arbitrarily on cognitive or mental health barriers. Someone
with mobility problems or physical weakness may need to pay for taxis
to and from shops, the delivery costs of online shopping (or the need
for specialist equipment to be able to do this), or physical
assistance with shopping; and someone with sight loss would have
problems buying food and drink and would need help to choose
appropriately. This descriptor should recognise these physical
barriers to obtaining food and drink.
Example: DLA recipient:
“I have to take a cab every time I am carrying heavy groceries or
other awkward purchases - don't have as much strength on right side
and have had a seizure within the last year so can't drive at
present."
*
Preparing and cooking
As stated above, it is particularly important that people’s ability to
prepare a meal repeatedly, reliably and safely is taken into account –
we believe that this wording should be used on the face of the
descriptor.
‘Assistance’ should be interpreted broadly to cover supervision, as
well as direct physical assistance:
Example: Person living with HIV:
“When I can cook I do need someone with me, or the place gets flooded,
gas gets left on etc. Suffice to say I am not really cooking the meal,
I am being humoured while I pretend I am - but that's fine by me, I am
safe.”
It is important that someone who is able to make a sandwich or use a
microwave without assistance or prompting, but who may need assistance
or aids to cook a main meal, will continue to attract enough points to
receive PIP.
The concept of ‘aids or appliances’ should also be widened to cover,
for example, the need to buy pre-chopped vegetables or other
pre-prepared food, or the increased use of materials, ingredients or
utilities (see the examples below).
Example: Mother of a DLA recipient:
"My son never goes on holiday, but spends a lot of time at home. His
food has to be carefully prepared and pureed, this means that my
weekly spend on food is high."
Example: Current DLA recipient:
“Just making a cup of tea is much more expensive for a disabled
person, given the additional equipment required: tilting kettle
adaptor, perching stool, trolley table, accessible fridge, adapted
kettle for tilter, which consumes more electricity as it cant be used
on the flat element type kettle, small bottles of milk, or a carer to
decant large bottles into smaller bottles.
…also the increased waste involved; as disabled people spill more,
milk, water, sugar... and any broken mugs and cups.
…and the increased use of materials to clean up the mess; extra
laundry, extra kitchen roll etc.
And that is just a cup of tea, which might be 35 times a week...”5
In addition, preparing a meal should extend to being able to identify
and select ingredients, and read and understand cooking instructions –
issues which may be problematic and require assistance for people with
visual or cognitive impairments.
*
Taking nutrition
“Can take nutrition only with intermittent assistance or prompting”
must include those who require assistance to cut up and identify food
(such as those with visual impairment or problems with manual
dexterity). This will generally occur at the beginning of a meal or
course, so it is important that the definition of “intermittent”
covers this level of support.
In addition, the assessment needs to recognise the additional amount
of help needed with this by people with conditions such as Crohn’s or
Colitis, which may necessitate small but more frequent meals
throughout the day.
*
Managing medication and monitoring health conditions/ Managing
prescribed therapies other than medication
In a survey of almost 1500 DLA recipients conducted by the DBC in 20106,
24% of people named paying for ‘health treatment’ as one of the top
three things that they spend their DLA on.
We are concerned that “monitoring health conditions” and “managing
prescribed therapies” may be interpreted narrowly, and will not extend
to cover the broad range of activities that may be involved with
managing a health condition and maintaining general health. For
example, exercise, accessing social support networks, maintaining a
routine or certain activities, or complementary therapies may not be
‘prescribed’ by healthcare professionals, but may be an extremely
important element of someone’s management of their physical or mental
health condition. All of these could entail significant additional
costs and support.
Example: person living with a mental health condition:
“The money from DLA would help pay for things like massage which
really makes me feel better.”
Example: person living with myalgic encephalomyelitis/chronic fatigue
syndrome (ME/ CFS):
“I have special dietary needs and need supplements that help to manage
the illness but are not available on the NHS. Also, treatments such as
osteopaths, chiropractors and other therapies that alleviate pain and
other symptoms but have to be paid for privately.”
Although both activities include a reference to mental health
conditions in the general notes, there are no explanatory notes as to
how these descriptors might apply, and examples tend to be specific to
physical health conditions. It is also important to note that people
with mental health conditions often lack insight into their condition
and this would impact their ability to monitor their condition and
manage medication.
By focusing simply on prescribed treatments, those with conditions for
which there are few licensed treatments available (such as progressive
forms of MS) are less likely to be able to access support through PIP
– although the lack of support and treatment they may therefore
receive from the health system may mean that their needs are greater.
Example: Person living with MS:
“I also use my DLA to get alternative treatments. These supplement my
care package and make me feel more able to cope with the daily
realities of life with MS. I use it for Reflexology and massage and
other treatments. I believe they have a positive effect on my MS. I
also use it to treat myself from time to time. I work, but I am
struggling. I also have depression and chronic fatigue. The occasional
treat helps me cope. The DLA also pays for my prescription drugs which
are costing me on average £50 per month. On top of that are all the
supplements I take to try and help with my MS. These cost a lot but in
the absence of a cure, I continue to take them. I also use DLA for
Yoga and Pilates classes both of which help a little with my symptoms.
These classes cost me approx £20 per month.”
In addition, the support someone needs to manage their medication,
treatment or condition may not be limited to physical assistance or
prompting. For example, DLA may at present help support someone with
HIV to connect with a full range of psycho-social support, counselling
services, and informal social networks to help them to manage their
condition and the side-effects of medication. Similarly,
non-prescribed psychological therapies can be essential to people with
mental health problems in managing their condition. Support should
therefore be understood in this broader sense.
A large number of current DLA recipients, particularly those with
long-term conditions who do not qualify for free prescriptions, use
their DLA to support the cost of prescriptions. In the absence of the
Government reconsidering its decision not to offer free prescriptions
to people with long-term conditions, we believe that PIP should take
into account and support these costs.
Example: person living with a mental health condition:
“The cost of medication is huge. I can’t afford the prescriptions.”
We would favour a descriptor which looks more broadly at ‘maintaining
health and condition management’, which would include not only
managing medication and prescribed therapies, but also maintaining a
healthy lifestyle.
We are concerned that managing medication, treatment and health
conditions is proposed to be low-scoring – we recommend that this
should be medium scoring.
*
Washing, bathing and grooming
A descriptor of “above a level of self neglect” represents far too low
a level for people to be accepted in work or socially. The ability to
make oneself feel clean and presentable can be an extremely important
psychological factor for people in participating socially, and this is
not recognised through the current wording of the descriptor. We
believe that this wording should be replaced by ‘to an appropriate
level’: this should be interpreted subjectively, based on the
individual’s lifestyle. For example, someone in employment will be
expected to be able to make themselves presentable far ‘above a level
of self neglect’; they may be expected to adhere to high standards of
smart and professional personal presentation.
Example: Person living with MS:
“I use my DLA for hair and nail appointments, waxing. I know this
sounds good, believe me it isn't and I don't go every week-or even
every month: I can no longer dry my hair, paint my nails or shave my
legs, (I wish I could ). Some times I need one thing more than
another, i.e. some weeks I may need to change and wash my clothes
several times a day, some weeks I don't eat much, I can go for months
before I can get my nails done or legs waxed, this often distresses me
as I take care of my appearance.”
The focus on cleaning the body, brushing teeth and cleaning and
brushing hair means that the descriptor does not take into account the
ability to maintain hygiene beyond the body. This would include
washing clothes and keeping a clean and safe living environment.
A large number of people use DLA to obtain support with cleaning and
maintenance in the house to ensure that their living environment is
appropriate, safe and hygienic. An unhygienic or untidy home can
increase the risk of illness and injury through falls, and parents and
carers may place particular importance on the ability to maintain a
clean and safe living environment. Those who work are often more
likely to use the additional funds provided by DLA allow them to pay
for someone to help with housework that they are too exhausted to
carry out after work. Without this support, they may not feel able to
continue in employment. This is an important part of daily life and
should be adequately recognised in the assessment. We recommend that a
separate descriptor should be added to consider the ability to
maintain a clean and safe living environment unaided.
Example: Person living with a visual impairment:
“But then there are the other regular outgoings that I cannot choose
to [do without] which include handyman and maintenance (a lot of the
simple maintenance that a sighted person might undertake such as
changing a light bulb in an outside light, I have to pay someone to
do); laundry and gardening; IT equipment and aids.”
Example: Person living with MS:
“I use my DLA towards the cost of help about the house - cleaning,
ironing, shopping, childcare. I have had to give up my highly-paid
career because of my disease. This extra bit of cash has helped us to
maintain our home (although not our lifestyle) for our two children.
It would be the "straw that broke the camel's back" if this small
amount of cash were to be taken from me.”
Example: Person living with rheumatoid arthritis:
“How many able-bodied people have to pay someone to change a light
bulb or empty the dishwasher or cut their garden hedge? They may
choose to employ someone to do those tasks but they don’t have to.
Just as many of today’s poor are not the authors of their own poverty,
a disabled person isn’t the author of their own disability.”
The focus of this activity should also be widened to incorporate
appropriate toileting behaviour.
*
Managing toilet needs or incontinence
We are concerned that this descriptor does not take into account any
difficulties experienced in getting to a toilet while inside or
outside the home, or the frequency of toilet needs.
Example; person living with Crohn’s Disease
“I sometimes need to sit and rest due to fatigue whilst trying to get
up. I have to sit on the edge of my bed for about 5 minutes because of
stiffness and to gather my strength. At bad times I am confined to bed
or the sofa. I need help getting to the bathroom.”
Getting to the toilet is often more difficult at night time, and some
people may need assistance with this. The need for assistance
throughout the night should be particularly addressed.
Example: Person living with HIV:
“Why is night time no longer considered to be a more difficult time
than day time? Getting to the toilet when one is up is easier than
doing so when in bed, which is where people usually are at night and
without access to the help and support they may be able to access in
the day time.”
Example: Person living with Inflammatory Bowel Disease:
“I keep myself awake at night, because I don’t want to have accidents
in bed. I also have fatigue because I’m up and down [to the toilet]
about ten to fifteen times a night. I have fatigue during the day
because of the strain of trying to get to a toilet on time.”
Another difficulty for people with continence problems or leakage from
stoma appliances is the need for assistance with changing bedding
during the night.
The nature of IBD means that people with Crohn’s or Colitis may also
need help with cleaning the toilet or surrounding area. This is not
the same as the cleaning that is required in relation to general
household duties but a specific need arising from their disability.
Example: Person living with Crohn’s Disease
“Inevitably I have to rush to the toilet; I visit it five times within
an hour and my bottom is VERY painful; I have a fistula in my rectum
that throbs like hell and disgorges pus. Blood sprays out from the
rectum during bowel motions; it’s got to be cleaned up before it
stains the toilet bowl; I feel so weak by now that it feels like an
impossible task.”
*
Dressing and undressing
This focuses on the physical ability to dress, but not on being able
to make sure garments are co-ordinated and appropriate, not inside-out
and not soiled or damaged; issues which may require support for
someone with a visual impairment or problems with intellectual and
cognitive abilities, and which would be very negative if going to an
interview, meeting new people or generally socialising or being out
and about. As mentioned above (in our comments on the ‘washing,
bathing and grooming’ activity), it is important to consider an
individual’s personal situation in determining what would be an
appropriate level of attire. Someone in employment may be expected to
be not just presentable but smart, or indeed may need to wear a
specific uniform which makes dressing particularly difficult.
Example: Person living with a visual impairment:
“It’s important that when going to work my clothes are matching, worn
the right way around and not in need of repair in any way. It would
cause me real embarrassment if I were to turn up to work and my dress
was in fact inside out.”
The extra washing costs incurred by many groups of disabled people are
not reflected: points should also be awarded to those who experience
additional costs through the need to buy additional clothes due to
wear and tear, or who may experience high utility costs for washing
clothes. This may apply particularly to those with a visual impairment
or continence problems who may need to do additional washing. (See our
comments below on the cost of utilities).
*
Communicating with others
We are concerned that the proposals have confused capacity and
decision making with communication, and attempt to overly simplify
communication. A broad interpretation of communication should be
taken: there is a need to recognise that a complex pattern of
different activities is involved in communicating with others
successfully. This descriptor should also recognise the support, aids
or adaptations that people may need to gather information about the
wider world, in printed or electronic form.
We welcome the acknowledgement that communication and social
interaction can cause distress, but recommend that descriptor D for
this activity does not simply deal with ‘overwhelming’ psychological
distress but that there is an additional descriptor that covers
‘moderate’, or at least ‘significant’ distress.
The points allocated to this section must recognise that those who can
communicate only with communication support face a significant barrier
to participation, as for the majority of the time they will not have
access to this essential communication support. This support is
usually provided by social care so where people are eligible for
social care; this is limited and means-tested..
The fundamental importance of effective communication to social
participation cannot be captured with the use of one set of
descriptors. We believe that the criteria should recognise the
difference between expressive and responsive communication – between
being able to communicate with other people and being able to receive
and understand communication from others.
We refer the DWP to submissions from the sensory impairment sector,
supported by a number of DBC organisations, which have gone into more
detail on how this descriptor could be revised.
3.3 Mobility Activities
*
Planning and following a journey
--------------------------------
The descriptor on planning and following a journey considers a narrow
range of barriers, linked to learning disability, cognitive or sensory
impairment. It does not measure the full range of disability-related
costs in making journeys, for example the cost of taking a companion
on journeys, relying on expensive taxis due to inaccessible public
transport, or the additional fuel and wear and tear on a personal car
for those who have mobility difficulties or are unable to use public
transport because of continence problems, or have to undertake more
journeys to and from hospital or other healthcare appointments.
Example: person living with a mental health condition:
“Using public transport is extremely difficult for me unless I've got
somebody to accompany me, so DLA goes towards the running costs of my
car.”
The distinction between a ‘simple’ and a ‘complex’ journey does not
reflect the reality of the barriers faced by disabled people. For
example, for a blind or partially sighted person, a simple journey can
easily become complex due to road works, diversions or poor lighting.
For someone with a cognitive impairment, what determines whether a
journey is achievable or not may not be familiarity or length of the
journey, but how busy the route is and the number of distractions
faced. For example, people with MS often explain that they can get
extremely flustered and disorientated on a busy, noisy street – no
matter how familiar it is.
The stipulation in descriptor B that if a person is unable to leave
home on any occasion then does not satisfy that descriptor does not
take into account the fluctuating nature of some conditions or promote
independence. It also does not take familiarity or nature of the
journey into account. The guidance notes also refer to a need to prove
evidence that overwhelming distress has/would occur, not just that it
might. As indicated above, any number of unexpected events could cause
distress in the future and therefore the nature of the condition and
likely responses should be valid.
The guidance note mentions safety, but as with other descriptors, we
believe that this needs to be in the text of the descriptor itself.
Guidance and supervision to avoid danger must be included. For
example, for people with a visual impairment, support may be needed to
manage if something unexpected and unpredictable happens to disrupt
their route.
It is also vital to take into account communication needs when
travelling around. These are specific communication activities related
to travelling that we believe are not sufficiently taken into account
by the daily living communication activity. These include buying
tickets, asking for directions, communicating with drivers and
transport staff and other members of the public. For example, when
journeys become disrupted, transport providers often rely on verbal
announcements that would be inaccessible to people with hearing loss.
Example: a deafblind person
James is deafblind and communicates using hands on signing (a tactile
form of sign language). He is profoundly deaf and has tunnel vision –
meaning he is unable to identify people easily and has no peripheral
vision. He does travel independently to locations he is familiar with;
he has to be accompanied or travel in a taxi when the location is
unfamiliar. He can only communicate directly with people who know his
communication method or through simple written messages (where there
is sufficient lighting) and where he is able to identify the person he
would need to talk to. Therefore if there is an unexpected problem
during a journey, he is unable to hear any announcement or spot any
written information. He also faces significant difficulties in being
able to identify the right person to ask for help and also in
communicating directly with them.
*
Moving around
-------------
We welcome that the technical note published alongside the draft
regulations states that this activity “should be judged in relation to
a type of surface normally expected out of doors… and includes the
consideration of kerbs”. Once again, it is essential that ‘reliably,
repeatedly and safely’ is included in this descriptor. Some people
with mobility problems, such as those related to Parkinson’s or MS,
may be able to walk on an even surface with difficulty, but would not
do so outside without someone with them for fear of falling.
Similarly, the time taken to move a certain distance should be taken
into account – someone who can only move 50m extremely slowly and
hesitantly should not be taken to be able to do that activity unaided.
In their consultation document, “Disability Living Allowance reform”,
the Government expressed their intention to “take greater account of
the successful use of aids and adaptations as part of the Personal
Independence Payment assessment….This might mean, for example,
considering an individual’s ability to get about in a wheelchair,
rather than ignoring the wheelchair, as we do currently.”
While we recognise that someone who is able to mobilise successfully
using a manual wheelchair may need to be treated differently to
someone who is not able to mobilise independently at all, this fails
to recognise how aids and adaptations impact on the additional costs
experienced by people using them.
In the draft assessment, the threshold for the moving around criteria
is “Can move at least 200 metres unaided or with the use of a manual
aid.” This would have the impact of disqualifying anyone able to use a
manual wheelchair over a distance of 200 metres. This does not
acknowledge all the additional costs an individual may face if they
use a manual wheelchair, including the barriers posed by inaccessible
transport or local facilities – an individual’s local corner store may
be within reach using their manual wheelchair, but if this is
inaccessible, they will have to travel further, making use of either
an adapted car, public transport (if accessible) or taxi. This change
reflects a worrying pattern in recent reforms, which seems to imply
that you are no longer disabled if you can use a manual wheelchair.
This is illustrated by the following remarks from a person with a
spinal injury submitted during the consultation exercise:
Example: Person with a spinal injury:
“When I was turned down for DLA …. I was told that with the aids I
had, I was able to manage and so did not qualify! This is totally
ridiculous. I wrote and told them so, suggesting that surely a person
with a spinal injury who was totally dependent on a wheelchair to get
around, was not considered able-bodied just because he could get out
and about using his wheelchair? It comes down to how one defines
disability. I can walk short distances with crutches; otherwise I use
my wheelchair. Does this make me as able-bodied as my husband who uses
his legs to get around? No, of course not. It means I have an
alternative means of getting around, which happens to be more tiring
and less convenient than legs, and costs more money, even if it does
get me around. I am still disabled.”
In the same way, it is important that someone should be able to
qualify for PIP support if they can mobilise more than 50 metres but
less than 200 metres only through using a manual wheelchair – being
able to self-propel just 100m in a manual wheelchair represents a
significant disability which can result in major barriers to getting
around and high costs of transport and support.
The test should include some consideration of the ability to get up
and down stairs: the lack of ability to do this can make a wide range
of places inaccessible, and indeed can determine the ability for some
people to get around their own home. The ability to stand and sit
should also be considered: those who experience significant fatigue
when standing for a period of time will find it particularly difficult
to make use of public transport, as will those who struggle to rise
from sitting to standing: they may therefore rely on expensive taxis,
or require support or a companion when travelling around.
Example: Person living with HIV:
“I have difficulties walking around, using stairs, (stairs are a
nightmare, I can get down them with difficulty but getting up them
without great pain is a no- no), and getting in and out of a chair
(often a job and half!)”
Example: DLA recipient:
"I have to spend more on petrol because I can't use public transport
as I can't stand or walk for long so walking to a bus stop and waiting
for buses is impossible."
Moreover, the proposed assessment fails to consider moving around/
navigating indoor environments beyond the home - for example, people
who are blind or partially sighted may need support to be made aware
of obstacles, locate toilet facilities, entrances and exits or help if
one stumbles or falls in an unfamiliar area.
Other omitted activities/ suggested proxies
The assessment omits a number of important areas related to
independence and the additional costs of living with a disability,
including the maintenance of a clean and safe living environment, the
increased costs of utilities, and broader social participation.
As stated earlier, we recommend that a descriptor should be included
relating to the ability to maintain a clean and safe living
environment.
Example: Person living with ME/ CFS:
“I really struggle to keep my home tidy and I discourage people from
visiting because I get upset about the mess which means I end up more
isolated.”
We also recommend that consideration should be given to the cost of
utilities for disabled people. In the 2010 DBC survey noted ablove, of
almost half of the 1500 respondents who received DLA listed paying
bills such as electricity and water as one of the top three things
that they used their DLA to pay for.
Disabled people can face a wide range of increased utility costs.
These may include increased water and energy bills from the need to
flush the toilet more frequently or wash clothes more regularly, due
to incontinence or more regular spills. People may spend more time in
the house, or may need to regulate temperature to cope with their
condition (for example, MS, Parkinson’s and arthritis can be affected
by temperature changes), and would therefore have higher heating and
cooling costs. People with a visual impairment can require very bright
lighting leading to higher energy costs. Others may have increased
bills for internet and phone, or electricity for charging powered
wheelchairs or running adapted IT technology. All of these should be
recognised in the PIP assessment.
Example: Person living with autism:
Yolanda Davies is an adult with autism. She receives the middle level
care component and the low level mobility component. The cost of
utilities is extremely high in Yolanda’s household. Communicating with
people face-to-face is very difficult and phone conversations can be
very challenging. The use of the internet is highly necessary because
of the problems with face-to-face and phone calls. Her DLA helps to
pay for the cost of this utility. Paying for utilities on time can be
difficult due to organisation difficulties, this inevitably incurs
charges. DLA helps to offset this problem.
Example: Person living with a visual impairment
Mrs Stuart currently receives the middle rate care component and low
rate mobility component and is registered blind:
“I use it to pay for my higher electricity costs as I have to have
lights on more often and cannot use energy saving bulbs. I also have
to wash my clothes more often as I cannot see if they are clean.”
As stated earlier, the assessment considers a very narrow range of
activities and, far from the rhetoric about encouraging participation,
does not consider a person’s ability to engage in social activities,
maintain relationships, engage in community activities, volunteering
or employment, or to access local services. The current DLA claim form
asks about things you would like to do and the support you would need
for that. We recommend that this consideration is retained in the new
assessment (although perhaps with refined wording) to ensure that PIP
promotes participation and independence in its fullest sense, rather
than the bare minimum.
Example: person with a visual impairment:
Mrs Reid and her husband are both totally blind and are also guide dog
owners. They receive the middle rate of care and lower rate of the
mobility component of DLA. Their DLA goes towards taxi fares and rail
tickets. They also pay transport costs to their local Blind Society
for the numerous trips and their weekly swimming and activities
groups. Without DLA they would be unable to continue to enjoy their
social activities, as they would no longer be able to cover transport
costs such as taxis. Moreover, life would become more isolated and
stressful, and they may have to consider moving as they would not be
able to afford to live where they currently are.
Example: person with Asperger syndrome:
Stefan Bead is an adult with Asperger syndrome who receives the middle
level care component and low level mobility component. Some of this
money is used to enable him to access community activities, both by
paying for the transport to and from, but also any fees or costs that
can be incurred by attending these groups. He believes that without
the available money, he would not be able to participate and would
lose his independence. This would lead to higher levels of isolation
and would impact upon his wider health and well being. Being an active
person who has the opportunity to create networks of friends is
crucial to Stefan.
Example: DLA recipient:
"I tend to have a very limited social life, as by the time I get in
from work I am in too much pain to drive more during the evening. I
sometimes get lifts from friends, but mostly I would stay in as I
cannot afford taxi fees to go out. I used to love just going to the
beach to sit and watch the waves for half an hour, to help me relax,
so when I say 'social life' I mean things like this as well as
activities involving other people."
4. Mobility component for people in residential care
Following the publication of the Welfare Reform Bill, the Government
offered reassurances that the needs of people living in residential
care, currently threatened with the loss of their mobility payments,
will be assessed the same as all other applicants.
28th March 2011, The Parliamentary Under-Secretary of State for Work
and Pensions (Maria Miller)7:
“…We will ensure that the needs of individuals in care homes are
assessed in the same way as those of everyone else in receipt of DLA
as part of the PIP reforms.”
There is no information in the draft assessment about how living in
residential care is to be taken into account. The Minister has stated
that PIP mobility will only be removed from individuals where there is
‘overlap’ with other funding streams. However there is currently no
detail on how this would be assessed. We would welcome greater
transparency on this issue as the assessment process will be key to
ensuring that the Government adheres to its commitment to ensure that
people living in residential care are still able to get out and about
and lead independent lives.
Contact for further information
Rebecca Rennison, Co-Chair of the DBC policy group
020 3242 0269/ [email protected]
Hayley Jordan, MS Society
020 8438 0753/ [email protected]
1 DBC members: Action for Blind People, Action for M.E., Age UK,
Arthritis Care, Breast Cancer Care, British Heart Foundation, Carers
UK, Child Poverty Action Group, Citizens Advice, CLIC Sargent, Crohn's
and Colitis UK, Cystic Fibrosis Trust, Deafblind UK, Disability
Alliance, Every Disabled Child Matters, Guide Dogs, Haemophilia
Society, Inclusion London, LASA, Learning Disability Coalition,
Leonard Cheshire Disability, Livability, Macmillan Cancer Support,
Mencap, Meningitis Research Foundation, Mind, Motor Neurone Disease
Association, MS Society, Muscular Dystrophy Campaign, National AIDS
Trust, National Autistic Society (NAS), National Deaf Children's
Society, National Rheumatoid Arthritis Society, Papworth Trust,
Parkinson's UK, Rethink, RADAR, Royal National Institute for Deaf
People (RNID), Royal National Institute of Blind People (RNIB), Royal
College of Psychiatrists, RSI Action, Scope, Scottish Association for
Mental Health, Sense, Skill, Sue Ryder, The Stroke Association,
Transport for All, TUC, United Response, Vitalise
2 Macmillan and Dr. Foster ‘Free at the point of delivery?’
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/free_at_the_point_of_delivery.pdf
3 Please contact Rebecca Rennison, Leonard Cheshire Disability, for
more information. 020 3242 0269/ [email protected]
4 14th March 2011: The Parliamentary Under-Secretary of State for Work
and Pensions (Maria Miller):…Personal independence payment will
support disabled people to lead full, active and independent lives and
the assessment will consider their ability to carry out a range of key
day-to-day activities…
www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110314/text/110314w0004.htm#11031440000671
23rd March 2011: The Parliamentary Under-Secretary of State for Work
and Pensions (Maria Miller): ….provide an objective assessment and
ensure that we can help disabled people overcome the barriers that
they face to living full and independent lives.
www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110323/halltext/110323h0002.htm#11032384000701
28th March 2011: The Parliamentary Under-Secretary of State for Work
and Pensions (Maria Miller): Disability living allowance will be
replaced by the personal independence payment, which is a new, more
transparent and sustainable benefit underpinned by an objective
assessment of the barriers disabled people face in living full and
independent lives.
www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110328/debtext/110328-0001.htm#1103288000500
5 Wood, C and Grant, E, Counting The Cost, Demos, Dec 2010. Survey
sample size: 845
6 Benefiting disabled people? A report by the Disability Benefits
Consortium, April 2010. Available at
http://thehardesthit.files.wordpress.com/2011/03/benefiting-disabled-people-pdf.pdf
7
http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110328/debtext/110328-0001.htm#1103288000504
21