Memorandum submitted by Carers National
Association (SG17)
1. SUMMARY
1.1 Carers National Association (CNA) is
the UK's leading carers' organisation representing the views of
carers. Carers are people who look after someone who cannot manage
on their own without assistance due to ill health or disability.
CNA provides information and advice to around 30,000 carers and
professionals annually and raises the needs of carers to policy
makers and service providers.
1.2 There are an estimated 5.7 million carers
throughout the UK. The support they provide ranges from a few
hours a week up to 24 hours a day, 7 days a week care. Tasks include
help with the shopping and paperwork to bathing, lifting, feeding,
administering injections, medication and toileting.
1.3 In plans for the Single Gateway, carers
have been identified as a client group with special needs which
is welcome. These plans suggest that carers with substantial caring
responsibilities will not have to attend an immediate work-focused
interview. Roughly 1.25 million carers who provide substantial
care of 20 hours a week or more are of working age.
1.4 A focus on work in many of these cases
would be in the interests of neither the carer, the person being
cared for nor the Government. For example, where a woman is caring
for her partner who has recently had a heart attack or where a
parent caring full time for a chronically sick child. It is vital
that the Single Gateway deals with these carers sensitively.
1.5 The Single Gateway has several welcome
elements from the carers point of view:
— a single point of entry to the system
could make accessing information easier
— important linkages with other support
such as social services and housing
— personal advisers to provide tailored
support on work and training issues
1.6 In terms of the Single Gateway pilots,
CNA believes that the following issues needs to be considered
and resolved:
— work will be extremely difficult
if not impossible for some carers
— ICA should be removed as one of the
benefits triggering the Gateway
— there are difficulties and considerable
costs associated with substitute care if carers return to work
— too strong an emphasis on work will
undermine carers' self-worth
— advisers need guidelines and training
on what might constitute substantial care and in which situations
it might be inappropriate to interview a carer
— carers will need to be reimbursed
for substitute care expenses when attending interviews whether
held in a centre or at home
— evaluation of the pilots should include
carers who were not interviewed
— the interaction of carers' benefits
and work needs to be considered
— regulations will be needed when interview
are compulsory to ensure that carers with substantial caring responsibilities
do not have to attend an immediate interview.
2. ABOUT
CARERS NATIONAL
ASSOCIATION
2.1 Carers National Association is the leading
carers organisation representing the views of carers. Carers are
people who look after someone who cannot manage on their own without
assistance due to ill health or disability. CNA provides information
and advice to carers and to raise their needs and concerns with
policy makers and service providers. Our information and advice
line responds to around 30,000 queries annually.
3. INTRODUCTION
3.1 In setting out its plans for the Single
Gateway, carers have been identified by Government as a client
group with special needs. The Gateway to Work states that,
"for people with heavy caring commitments, an immediate focus
on work would not be appropriate. People will not be expected
to take part in an interview at the time when they make their
claim if work is not a practical option in the shorter term."[2]
3.2 CNA's evidence focuses around the practical
application of this statement and the provisions for the Single
Gateway contained in the Welfare Reform and Pensions Bill. If
the Single Gateway is to achieve its aims and deliver a sensitive
service, CNA believes the issues raised in this evidence will
need to be resolved.
3.3 It is estimated that there are 5.7 million
carers throughout the UK. Their support ranges from a few hours
help here and there to very substantial amounts of care. Not all
of these 5.7 million carers will pass through the Gateway.
3.4 In terms of more substantial care, there
are around 1.7 million carers who provide over 20 hours of care
per week and around 855,000 who provide over 50 hours of care
per week. An estimated 73 per cent of carers providing 20 hours
of care per week (around 1.25 million people) are aged 16 to 64
and could, potentially, come within the framework of the Single
Gateway if it were nation-wide although not all of these people
will be claiming benefits.[3]
4. WHY CARERS
ARE A
SPECIAL CLIENT
GROUP
4.1 Carers National Association has welcomed
the fact that the Government has recognised carers as a special
client group. A carer's ability to work or consider work is constrained
by the nature of their caring responsibility. Some situations
and care systems allow the carer to work part- or even full time.
Other carers are unable to work at all.
4.2 The nature of the caring role varies
according to the types of disability and illness of the person
being cared for, the carer's own health and personal situation.
Caring can be a 24 hours a day, 7 days a week job. There are women
caring for terminally ill partners, parents caring for disabled
children, sons caring for an increasingly elderly parent, fathers
caring for sons with mental illness, etc. What characterises these
situations is that the carer often has to be present to provide
a range of support. This might be supervision, administering medication,
helping the person to move, toileting, etc. If the carer does
not provide this support, then replacement care must be provided
to meet the needs of the disabled person. This has several implications
for the Single Gateway which are dealt with in later sections.
4.3 There are significant differences between
caring as a parent and caring for a disabled or ill person of
any age. Unlike parenthood, caring is not predictable. It can
happen overnight with the unexpected onset of disease or illness
or its progression can be almost imperceptible as the person being
cared for graudally requires more support. As a non-disabled child
gets older they become more independent. The reverse is often
true in caring situations. Caring is an extremely stressful task,
both physically and mentally.
4.4 Nationally, around one in eight carers
combines work with employment.[4]
Carers in paid employment say that work is important not just
for the income but also for the personal contact. Carers who have
given up work become isolated. However, as CNA's joint New Deal
project with Centrica plc in the North West of England has shown,
getting current and former carers back to work has its difficulties.
5. WHY INCLUDE
INVALID CARE
ALLOWANCE?
5.1 Invalid Care Allowance (ICA), the main
carer's benefit, is one of the benefits which will trigger the
work-focused interview process. Carers National Association believes
that this decision requires urgent reconsideration before the
start of the pilot projects. We believe that ICA should be removed
from the list of triggering benefits.
5.2 To receive ICA, a carer must be providing
a minimum of 35 hours care a week for a person who is receiving
either middle or higher rate care component of Disability Living
Allowance or Attendance Allowance. The benefit was probably included
in the list as it is for working age people who are, "unable
to work full time because of their caring responsibilities".
The basic level of ICA is £39.95 (1999-2000 levels).
5.3 CNA believes that the inclusion of ICA
in the Gateway is unrealistic and inappropriate. In order to receive
the benefit, carers are already providing support equivalent to
a working week. The majority of carers provide far more support
than this; 77 per cent of ICA claimants provide 50 hours or more
care per week. To expect ICA claimants to consider the issue of
work on top of these substantial caring responsibilities is unrealistic.
6. THE ECONOMICS
OF CARING
6.1 On a larger economic scale, the costs
of carers giving up caring are considerable. Replacing the total
care provided by carers would cost the taxpayer an estimated £34
billion per year.[5]
6.2 The main carer's benefit, Invalid Care
Allowance (ICA), by comparison, is "cheap care". It
is worth £39.95 a week for which a carer must be providing
a minimum of 35 hours care—a full working week. This works
out at about £1.14 per hour. Paragraph 8.5 details how the
vast majority of ICA claimants provide care far in excess of 35
hours a week. The low rate of ICA is an issue for carers and particularly
as it is set at a rate below the minimum wage.
6.3 It is difficult for a carer to "make
work pay". Purchasing substitute care for an afternoon would
cost around £36 for four hours at a market rate of £8.00
per hour. Even if substitute care were purchased at the level
of the minimum wage, it would only buy enough care to cover a
day's work. As carers do not receive any benefits to purchase
substitute care, income from employment would barely cover these
costs.
6.4 It is also unrealistic to expect carers
to access assistance from social services. Few departments, if
any, would provide 40 hours homecare required to enable the carer
to work. The range of appropriate care that disabled people want
and need does not exist. For example, if there is only a day centre
locally for elderly people with dementia, this would be inappropriate
for a disabled man aged 45. The effect of the carer working needs
to be considered in conjunction with the needs and views of the
disabled person.
6.5 It seems sensible to ensure a balance
whereby the emphasis on work does not outweigh the interests of
the carer, the disabled person or the national economy.
7. CARERS GENERAL
VIEWS ABOUT
THE GATEWAY
7.1 There are several positive aspects about
the Gateway from carers' point of view. Carers consistently express
their frustration at the difficulty of having to provide information
to different agencies. They also have difficulties accessing information.
Having a single point of access to services and improving linkages
between different public agencies and forms of support could be
very welcome.
7.2 Carers who wish to access support and
advice on returning to work find that the current system does
not cater for their needs. After a period of caring, carers' confidence
levels are low. A personal adviser will help some carers who wish
to continue working or wish to return to work.
7.3 However, carers also have a number of
concerns primarily about the focus on work and the Government's
intention to make the interview compulsory. Since the announcement
of the Government's proposals in the media, CNA's CarersLine has
been inundated with calls from carers who are extremely concerned
about the Gateway, particularly the element of compulsion which
is detailed in the Welfare Reform and Pensions Bill. The focus
on work and reward for those who work has made many feel undervalued.
Carers feel that the role they are performing is not valued as
much as work. They are very concerned that they will be forced
to work; that the quality of life and health of the person they
care for will suffer; and, if they are unable to work, that their
benefits will be cut.
7.4 Although it will not be compulsory to
attend an interview during the pilot projects, these are nevertheless
issues which need to be addressed.
8. GUIDANCE AND
REGULATIONS ON
SUBSTANTIAL CARE
8.1 As already mentioned, carers with substantial
caring responsibilities will not have to attend an immediate interview.
In order for these carers to be "opted out", advisers
and registration and orientation officers will need guidelines
on what constitutes substantial care.
8.2 We would consider that, at this pilot
stage, advisers need training in carers issues and good reference
material. Training should be ongoing and cases should be regularly
checked and monitored early on to ensure that the right decisions
are being made by staff.
8.3 Identifying carers is not always easy.
Carers do not identify themselves as such. They see their role
as being a mother, father, son, daughter, etc. It should be relatively
simple to identify carers through their wish to claim the main
carer's benefit, ICA. Identifying carers through existing entitlements
is less straightforward since there are many carers who provide
substantial care but who do not claim ICA or are not entitled
to claim ICA.
8.4 Defining substantial care is not straightforward.
"Substantial care" appears in the Carers (Recognition
and Services) Act 1995 but is neither defined in law, nor guidance.
The Social Services Inspectorate (SSI) considers 20 hours or more
care per week to be substantial.[6]
Naturally, what is substantial will vary according to the carer
and their particular situation. It should not necessarily be counted
in the number of hours or tasks being carried out eg a parent
caring for a son or daughter with severe mental illness will be
caring substantially but on a periodic basis.
8.5 We have already stated our view that
Invalid Care Allowance should be removed from the list of triggering
benefits for the Gateway. To receive the benefit, carers must
be providing a minimum of 35 hours care. This would automatically
constitute substantial care according to SSI definitions. The
most comprehensive research available on ICA showed that 77 per
cent of ICA claimants provide 50 hours or more care per week and
78 per cent of ICA claimants had been providing substantial care
for over five years.[7]
Only around one in ten carers receiving ICA combine work with
care. There are clearly strong practical reasons why ICA should
be discarded as one of the benefits leading to the Gateway. Although
these carers could still be notified that the interview process
exists in case they wished to access that support.
8.6 If the Government implements the provisions
in the Welfare Reform and Pensions Bill, work-focused interviews
will be compulsory and benefits will be sanctioned if claimants
do not comply. CNA considers that regulations will be necessary
to ensure that carers are protected. The Bill gives the Secretary
of State the powers to make regulations on which categories of
people to exclude from the compulsory work focused interview.
These regulations could be supplemented by guidance and training.
8.7 It should be possible to devise regulations
which ensure that carers with substantial caring responsibilities
are excluded from having to attend a work-focused interview but
still have the option of attending if they so wish. These would
have the added benefit of recognising carers as a group with special
needs and offering them some protection. By devising regulations
in this way it could improve the quality of the initiative. Advisers
will be more likely to be aware of provisions in regulations and
more likely to cross refer to supporting guidance if they are
in any doubt.
8.8 Our conviction of the need for regulations
is based on our knowledge and experience of how guidance, generally,
is implemented. For example, our research into the implementation
of the Carers (Recognition and Services) Act 1995 showed that
practice based on guidance was patchy and dependent on individuals.[8]
Relying on individual advisers discretion for such important decisions
could lead to error, substantial disruption and possible harm
to the carer's ability to care. Advisers will, undoubtedly, be
held to account by advocates for special needs groups if poor
advice is given.
8.9 CNA recognises that the Government is
keen to ensure that no individual is excluded from the opportunity
of having a work-focused interview. We believe giving carers protection
in regulations would allow the Government to balance this objective,
with the National Carers Strategy pledges.[9]
8.10 It appears that individuals working
less than 16 hours a week should have a work-focused interview.
The majority of carers who receive ICA and also work will be working
fewer than 16 hours because of the earnings limit being set at
£50 only per week. CNA questions whether it is necessary
to compel carers to attend an interview when they are already
providing a minimum of 35 hours care per week. This will become
more of an issue if the Welfare Reform and Pensions Bill is implemented.
9. THE WORK-FOCUS
9.1 For those carers with lighter and/or
predictable caring responsibilites, discussing and finding work
may be very welcome. However, for other carers it will be problematic.
For some of these carers, raising the issue of work may mean that
the carer has to think about a time when the person they care
for has died or gone into permanent residential care. The prospect
of work may not be appropriate if a carer is trying to cope with
a wife's stroke or a partner's heart attack. It is vital that
these issues are dealt with very sensitively.
9.2 Advisers and those designing the system
also need to be aware of the fact that caring can be characterised
by high levels of depression. In a study by CNA, 52 per cent of
carers had been treated for stress related illnesses, but this
rose to around 75 per cent of carers where they were looking after
someone aged 11 to 15. [10]
9.3 It is inevitable that carers will be
discussing very personal issues. These must be kept confidential.
Carers should also be offered the opportunity of conducting these
interviews and information exchanges in a private setting. Local
pilots may find it hepful to make contact with local carers support
projects as some provide emotional support, contact with peers
and counselling.
10. DESIGN
10.1 The design of the pilots places great
emphasis on the registration and orientation stage (R&O) and
the adviser stage. Both will be crucial for ensuring that carers
are correctly supported. The R&O stage will have to identify
those carers with substantial caring responsibilities. This is
more complex than it may appear since the majority of carers will
not identify themselves as such but as parents, mothers, sons,
sisters, etc. A balance will have to be struck between getting
the right information to ensure that individuals are not burdened
with an interview at an inappropriate time and asking questions
which are too intrusive. This would be most important for people
who have recently started caring, or carers who are caring for
someone who is dying or has just died.
10.2 The division in the adviser stage is
welcome. The first stage would focus on benefits and what other
support is available. The second stage, if appropriate, would
focus on either a pathway to work or possibilities of further
education and re-skilling.
10.3 For a carer to be able to combine work
and care, they will probably require more support from the statutory
services. Advisers should not assume that securing further services
is straightforward. The majority of social services departments
have eligibility criteria and, if there is a carer, the disabled
person tends to be given lower priority. Carers will not necessarily
be able to access further support to enable them to seek work.
Appropriate support is not always available for the disabled person
and disabled person also has the right to refuse services. Paragraph
6.3 details the problems of the costs of substitute care.
10.4 Home visits will be important for carers
who may not be able to leave the person they care for. If the
carer has to cancel an appointment or does not turn up this might
be due to an emergency arising from the caring situation. Advisers
will need to be fully aware of these issues when dealing with
carers.
10.5 In order to attend a work focused interview,
this might involve not only the costs of attending, but also substitute
care costs. CNA would recommend that the costs of substitute care
are reimbursed to ensure that they can attend. This would also
be needed for a home visit. For example, the carer may not be
able to give their full attention to the interview if the disabled
person still needs constant supervision as in the case of dementia.
10.6 Carers National Association is involved
in advising on the Single Gateway. We will be one of a number
of organisations presenting our client group's issues during an
event at the end of June designed to supplement the adviser's
training. CNA is also reviewing the Employment Services' training
materials on carers to how they would need to be altered to apply
to the Single Gateway advisers.
10.7 Given the unusual difficulties and
sensitivities surrounding carers, we have some worries that advisers
have not been given sufficient time to understand fully the needs
of carers by the time the pilots begin.
11. SCOPE
11.1 The scope of the pilots does not seem
to encompass how different benefits interact with work. This could
be a useful part of the evaluation process. CNA is running a New
Deal project in the North West of England in conjunction with
Centrica plc helping carers and disabled people back into work.
One of the biggest barriers for those job-seeking carers has been
the interaction of their benefits with work.
11.2 At present, if a carer receiving ICA
earns even one pence over the earnings limit of £50 they
lose 100 per cent of their ICA. If they are employed and need
to leave because they are unable to cope with working and caring,
they may not be able to receive ICA straight away after giving
up work because the calculation of final earnings disentitles
them to benefit.
11.3 Another area worth reconsidering is
reintroducing travel expenses as a deduction for the purposes
of calculating earnings for ICA. This was an extremely useful
deduction which was very easy to understand. It was removed in
1996 when the ICA regulations were changed. In the light of the
Government's focus on work and incentives to work, this would
seem a small, but important measure which would benefit those
working carers.
11.4 CNA would also welcome measures which
examined the quality of advice given to carers. Given the high
substitute care costs and the interaction of work and education
on their benefits, great care needs to be taken that carers are
not left financially worse off as a result of the Single Gateway.
11.5 For carers who have ongoing responsibilities
and who wish to return to work, their prospects of doing so would
be greatly enhanced if more companies had carer friendly employment
practices. The Government's awareness campaign on family friendly
employment would be important in underpinning the Single Gateway
programme. The Employment Relations Bill which contains a right
to time off for domestic incidents should also help carers to
have time off when an urgent caring issue arises.
12. OBJECTIVES
AND EVALUATION
12.1 The objectives and evaluation should
be clearly thought the right service is delivered. Evaluation
should cover all aspects of the Single Gateway. This would include
the amount and quality of training, supportive materials, supervision,
problems with benefits, how linkages work, etc.
12.2 Evaluation of the pilot projects must
include those carers who do not attend an interview. It is likely
that carers with the most substantial caring responsibilities
will not respond because they will not consider it relevant given
the extent of their caring responsibilities. If this is the case,
those with lighter caring responsibilities would be over-represented
in the pilots. This would then be problematic for the nationwide
sheme when compulsory interviews and benefit sanctions are introduced
if the difficulties of the hardest pressed carers do not come
to light.
12.3 CNA believes it would be counter productive
to have a target which simply measured the number of people who
are helped back into work. This would lead to an over-empahsis
on work and would develop a tendency towards insensitive and inappropriate
proceudres as a result of pressure to reach targets.
12.4 The views of specific client groups
should be sought to evaluate the procedure and quality of advice
given. The pilot projects should also ensure that a rigorous complaints
procedure is established that is easy for claimants to access.
12.5 Other methods for evaluation could
include the number of individuals who are receiving their full
benefit entitlements.
12.6 It would be beneficial to evaluate
advisers' views on the different client groups and how confident
they felt about responding to their needs for advice, information
and support. This evaluation should be ongoing, possibly built
in through the supervisory structure in the pilots. This would
hopefully help to iron out any difficulties in starting new pilots.
13. TIMESCALE
13.1 Carers National Association believes
that the timescale is too short. There are too many details to
consider fully in such a short timescale before setting up the
pilots. The second wave of pilots will have to begin after only
one month's evaluation of the first wave of pilots at the very
most. Given that the Government intends to introduce the Single
Gateway countrywide by 1 April 2000 subject to legislation, very
little evaluation will have been carried out before this begins.
13.2 We believe that in the interests of
protecting vulnerable clients and delivering a better service
the timetable needs to be adjusted to be more realistic.
14. CONCLUSION
14.1 There are several positive aspects
to the Single Gateway, some of which CNA has pressed for in the
light of our members' concerns and experiences. We believe that,
if good quality advice and support is provided, it will ease carers'
transition back into work when caring has ceased or enable them
to take up employment opportunities whilst still caring. This
could have long-standing benefits for those individuals in enhancing
their present and future incomes.
14.2 As this evidence also clearly details,
the Single Gateway must provide the right support to more vulnerable
individuals and recognise that for some, work is neither possible
nor desirable. Urgent consideration needs to be given to whether
ICA should be removed from the list of benefits which trigger
the Gateway. If plans for the Gateway incorporate and respond
to the points detailed above and there is sufficient investment
in training, support and evaluation, we believe that the initiative
will be successful.
April 1999
2 A new contract for welfare: The Gateway to Work,
DfEE and DSS, Cm 4102, The Stationery Office Ltd, October
1998. Back
3
Informal Carers in 1995, General Household Survey 1995,
Office of National Statistics, 1998. Back
4
Rough estimate based on statistics from Informal Carers in
1995, op cit. Back
5
Financing Long-term Care in Great Britain, S R Nuttall
et al, Institute of Actuaries, 1993. Back
6
Caring Today: A National Inspection of Local Authority Support
to Carers, SSI, Department of Health, December 1995, Appendix
A: Inspection Method. Back
7
Social Security and Community Care: The Case of Invalid Care
Allowance, DSS Research Report No. 4, Eithne McLaughlin, 1991. Back
8
Still Battling? carer's experiences of the first year
of the Carers Act, Carers National Association, June 1997. In
on the Act? social services experiences of the first year
of the Carers Act, Carers National Association, October 1997.
A Matter of Chance, Inspection of local authority support
for carers, Social Services Inspectorate, Department of Health,
November 1998. Back
9
Caring About Carers: A National Strategy for Carers, H
M Government, February 1999. Back
10
Ignored and Invisible, Carers' experience of the NHS, Henwood
M, Carers National Association, June 1998. Back
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