Select Committee on Social Security Minutes of Evidence

Memorandum submitted by Carers National Association (SG17)


  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.


  2.1  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.


  3.1  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]


  4.1  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.


  5.1  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.


  6.1  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.


  7.1  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.


  8.1  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.


  9.1  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.


  10.1  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.


  12.1  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.


  13.1  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.


  14.1  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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