APPENDIX A

PERSONAL BUDGETS FOR UNPAID CARERS

A Meeting of the Lincolnshire Carers Partnership

A Review by the Adults Scrutiny Committee February 2012

Personal Budgets for Unpaid Carers Task and Finish Group Review Contents Page

Introduction and Executive Summary Chairman’s Introduction

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(Councillor John Marriott, Chairman of the Task and Finish Group)

Executive Summary and Recommendations The Task and Finish Group, and the Review

4 6

Introduction and Executive Summary National Government Policy Lincolnshire Policy

Carer’s Needs Assessment

8 11 12

Personal Budgets in Practice Funding and Take-up of Carer’s Personal Grants The Views of Carers on Carer’s Personal Grants

13 15

Other Support for Carers Lincolnshire Carers Partnership Education, Employment, Learning and Leisure Scheme Carer’s Allowance (Department of Work and Pensions)

18 20 20

Personal budgets in Other Areas Safeguarding

21 22

Appendix A – List of Contributors, Activities and Documents Reviewed Appendix B – Examples of Three Carer’s Support Plans Appendix C – Glossary of Terms

23 25 28

CHAIRMAN’S INTRODUCTION Carers, both young and old, are the unsung heroes of our society and they need every bit of help they can get. In 2011 it was estimated that 75,000 people were providing a caring role in Lincolnshire alone, which represents an increase of 15% over the past ten years. Without their devoted and, in many cases, unpaid support of their loved ones a massive burden would be placed on our social care services. Over the past few months my colleagues and I have been privileged, during the course of this review, to meet many carers and to listen to their concerns. Believe me, as far as I am concerned, it has been quite a humbling experience. Our review has focussed on those carers who receive a personal budget. The term personal budget can cause some confusion to people who are not familiar with it. As this report will detail, personal budgets for carers are usually paid as a single annual payment, in the form of a direct payment. We would like to suggest that this is referred to in future as a carer’s personal grant. We believe that this would be an easier and more understandable term for carers and people in general. We would also like to emphasise that support to carers is not just about a financial award but also about providing advice, emotional support and recognition. In addition to my Councillor colleagues, I would also like to thank all of those who assisted us in our review, but in particular I would like to record my personal thanks to Pauline Mountain, the Chair of the Lincolnshire Carers’ Partnership, for her support and suggestions during the course of this review. I would also like to mention the members of Lincolnshire Carers Partnership, who welcomed members of the Task and Finish Group to their meeting in October. As I stated earlier, the Task and Finish Group has undertaken face to face conversations with carers, and I would particularly like to thank the two groups of carers, whom we met in Skegness and Lincoln, as well as the two young carers who attended a recent Councillor Development Training event, in which some members of the Task and Finish Group participated. All of their views have been most useful to us. Finally, I would like to express our thanks to our Scrutiny Officer, Simon Evans, for his patient and thorough work to make this review possible. I really do hope that our work will lead to tangible improvements and benefits for carers throughout Lincolnshire.

COUNCILLOR JOHN MARRIOTT Chairman of the Task and Finish Group

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EXECUTIVE SUMMARY AND RECOMMENDATIONS This report has focused on the development of personal budgets for carers, which we are referring to as carer’s personal grants, and in particular how these grants can be further improved in Lincolnshire. As we progressed our review, it became clear that there were other issues of importance, which we would like to take the opportunity to highlight. The County Council has continued to emphasise the importance of carers. Firstly there was an allocation of £50,000 per year for two years to develop carers partnership arrangements in Lincolnshire. There is also a commitment in the County Council’s Business Plan 2012-2015 for further support for carers. We support the continuation of this plan and the placement of carers at the heart of the Council’s decision making. Carer’s personal grants have been successfully taken up over the last three years with a year on year increase in the number of people who receive a grant. However, this cannot continue, without some consideration of the future funding requirements. Linked to this, is an issue of eligibility, as two categories of carers currently cannot receive these grants. The carers we spoke to were highly complimentary about their experience of the carer’s needs assessment and of the process for allocating the personal budget. This is supported by information provided by the Customer Service Centre, following its own survey of carers’ feedback. We understand that some carers may be troubled by the requirement to retain evidence of how they have spent their budget. We wonder whether a more light-touch arrangements might be introduced. The carer’s personal grant process can be viewed as a transactional process. Throughout this review, the importance of the emotional wellbeing to carers has been highlighted. Carers have told us that they can feel lonely and isolated, and at times just need someone to talk to. We feel the need to respond to these views, with a couple of suggestions. Recommendation 1 We are aware of some of the confusion in the terms used to describe personalisation. To clarify the situation, we recommend to the Executive that consideration is given to using the term: “Carers’ Personal Grant” to describe the personal budget given to carers. Recommendation 2 We are pleased to see the importance given to carers in the County Council’s Business Plan for 2012-15. We acknowledge the devotion and good will of all the carers in Lincolnshire and we believe that support for carers should continue to be emphasised in all the relevant policies and decision making of the County Council.

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Recommendation 3 We recognise the importance of carer’s personal grants and the very positive impact these have. We also recognise the increasing number of people who are receiving these grants. We recommend that the Executive take into account these factors when considering future funding to ensure that the carer’s personal grant is accessible to all those people who require it and the level of each grant allocated is maintained at current levels or increased. Recommendation 4 We acknowledge the current budgetary constraints, but we would like the Executive to consider clarification of the reasons for the present policy whereby parent carers and young carers are not eligible for funding for a carer’s personal grant. Recommendation 5 We recognise the importance of ensuring that carer’s personal grants are used as intended. However, following comments made to us regarding keeping records and receipts, we recommend that consideration is given to a more light-touch monitoring arrangement, so that carers are not unduly worried or put under pressure. Recommendation 6 We were touched by some of the stories we heard from carers, in particular the feelings of loneliness and isolation. We believe that more should be done to tackle these feelings of loneliness and isolation. We would like to recommend that the following suggestions are explored: (a)

the possible development of a 24/7 carer to carer “buddy” phone line, to enable carers to provide mutual support and share experiences; and

(b)

exploring whether the County Council’s facilities, such as rooms in local libraries, could be used to provide venues for local carers support groups, at either a reduced rate or free of charge.

Recommendation 7 We fully support the County Council’s decision of 16th September 2011 to provide funding of £50,000 per year over two years, to develop both the Lincolnshire Carers Partnership and the Lincolnshire Young Carers Partnership. We recognise that the County Council may not be able to maintain this level of funding beyond the two year period and we recommend that the Council looks to provide additional forms of support such as offering its advice and expertise in order to help the partnerships develop further and raise additional funds. Recommendation 8 We were very impressed with the work of the Education, Employment, Learning and Leisure Scheme (EELLS), the “Who cares for you” initiative and other work ongoing to help prevent more significant problems for carers later on. We recommend that the Council continues to work with the Lincolnshire Carers Partnership to develop and support existing and new preventative strategies. 5

THE TASK AND FINISH GROUP, AND THE REVIEW Task and Finish Group Members Councillor John Marriott Councillor John Marriott is the County Councillor for Hykeham Forum. He is a Member of the Adults Scrutiny Committee and chaired the Task and Finish Group.

Councillor Paul Carpenter Councillor Paul Carpenter is the County Councillor for Grantham East. He is Vice Chairman of the Adults Scrutiny Committee.

Councillor Mrs Charlotte Farquharson Councillor Mrs Charlotte Farquharson is the County Councillor for Bourne Castle. She is a member of the Adults Scrutiny Committee.

Councillor Hugo Marfleet Councillor Hugo Marfleet is the County Councillor for Louth Wolds. He is the Executive Support Councillor to the Leader of the Council.

Acknowledgements We would like to express our gratitude to all those people who helped and supported us during the course of this review, in particular, Pauline Mountain, Chair of the Lincolnshire Carers Partnership, who attended most of our meetings. We are also grateful to Simon Murphy, Carers Development Officer and Laura Blaine, from the Carer’s team at the Customer Service Centre, for their support during this review. We would like to acknowledge the contribution of Councillor Bill Aron, who attended two of our meetings. Finally, and most importantly, we would like to thank the carers who shared their views with us. 6

Pauline Mountain Chair of the Lincolnshire Carers Partnership

Terms of Reference The Task and Finish Group was established on 30 August 2011 with the following terms of reference: “To review the development of personal budgets for unpaid carers, in particular: • how the desired outcomes of greater choice, control and independence and a better quality of life could be further achieved and any good practice that might be highlighted; and • any relevant aspects of adult safeguarding, for example, during the initial assessment of the carer.” As we progressed our review, we became aware that there were many issues beyond our terms of reference that affect the wellbeing of carers. We have reflected some of these issues in this report. What Do We Mean by “Unpaid Carers”? The Lincolnshire Carers Partnership has adopted the following definition for a carer: “Within the Lincolnshire Carers Partnership our definition of a carer is anyone who spends a significant proportion of their life providing unpaid care and support to any person: a relative, partner, child or friend who is ill, frail, disabled or has mental health or alcohol substance misuse problems or HIV/AIDS.” Our review refers to “unpaid carers”. We have used this term to differentiate between paid carers who provide support to individuals as part of their job. One aspect that we wish to emphasise is that each unpaid carer has an emotional relationship with the person they care for. This is important as the relationship between a local authority or a voluntary organisation and the cared for individual is often no more than a transactional relationship, and does not usually have any intensive emotional involvement. As the relationship between a carer and a cared for individual is an emotional relationship, it includes a full range of emotions, as with any personal relationship. These emotions can include feelings of guilt, for example feeling guilty that they need help in their caring role, or feeling guilty that they need a break from the person they care for. What Does Personalisation Mean? It is important to understand the term personal budget. We have used the following explanation from the Audit Commission (Financial Management of Personal Budgets – Challenges and Opportunities for Councils - October 2010). “A personal budget is an allocation of money given to a person to spend on a support plan. The individual budget holder develops their support plan with social care professionals to meet a jointly agreed set of needs and outcomes. Personal budgets give users choice and control over the support they receive. 7

Personal budgets can be managed by way of a direct payment which is paid into a bank account to meet the outcomes agreed in a support plan. It can also be managed by the council or a third party. The Government’s preference (as outlined below) is for personal budgets to be managed via a direct payment. A key element in the determination of a personal budget is the Resource Allocation Scheme (RAS). There are separate Resource Allocation Schemes for the personal budgets paid to carers and for the personal budgets paid to other service users. Whilst the national documentation provides a definition of the personalisation, this is not always the end of the story. Sometimes people and organisations refer to personal budgets and direct payments as separate items, which can also cause confusion. Direct payments are a form of personal budget. As will be explained in our report personal budgets for carers are usually paid as a single annual payment, which to us appears like an annual grant. For this reason, we would like to suggest an alternative term for the personal budgets paid to carers: Carer’s Personal Grant. We believe that this term would better reflect the non-recurring nature of the payment and perhaps would be clearer to the carers. Recommendation 1 We are aware of some of the confusion in the terms used to describe personalisation. To clarify the situation, we recommend to the Executive that consideration is given to using the term: “Carers’ Personal Grant” to describe the personal budget given to carers.

NATIONAL GOVERNMENT POLICY Carers at the Heart of 21st Century Families and Communities: A Caring System on Your Side, a Life of Your Own The Government published Carers at the Heart of 21st Century Families and Communities: A Caring System on Your Side, a Life of Your Own, in 2008. This document sets out the following vision and intended outcomes for carers: “Vision: “Carers will be universally recognised and valued as being fundamental to strong families and stable communities. Support will be tailored to meet individuals’ needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, while enabling the person they support to be a full and equal citizen.

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“Outcomes: • “Carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role. • “Carers will be able to have a life of their own alongside their caring role. • “Carers will be supported so that they are not forced into financial hardship by their caring role. • “Carers will be supported to stay mentally and physically well and treated with dignity. • “Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive and to enjoy positive childhoods.” Recognised, Valued and Supported – the Next Steps for the Carers Strategy In November 2010, the Government updated its national policy, when it published Recognised, Valued and Supported – the Next Steps for the Carers Strategy. This document identified four particular priorities: • “Supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages. • “Enabling those with caring responsibilities to fulfil their educational and employment potential. • “Personalised support both for carers and those they support, enabling them to have a family and community life. • “Supporting carers to remain mentally and physically well.” In terms of our review, the third priority relating to “personalised support for both carers and those they support” is particularly pertinent. Recognised, Valued and Supported – the Next Steps for the Carers Strategy states that there is increasing evidence of improved outcomes for carers through the use of personal budgets and the increased choice and control they offer. Personal budgets can contribute to greater independence for both carers and the people they support, enabling carers to have a life of their own. Recognised, Valued and Supported – the Next Steps for the Carers Strategy confirms that personalisation means that all services and support available to carers should be tailored to their specific needs as far as possible: for example, advice and information should be inclusive of all carers and universally available services should be flexible in their approaches in order to respond to the variety of ways in which those with caring responsibilities can best be supported. A Vision for Adult Social Care – Capable Communities and Active Citizens In November 2010, the Government published its vision for Adult Social Care (A Vision for Adult Social Care – Capable Communities and Active Citizens). This document included seven principles. One of these principles is the commitment to personalisation: 9

“Personalisation: Individuals not institutions take control of their care. Personal budgets, preferably as direct payments, are provided to all eligible people. Information about care and support is available for all local people, regardless of whether or not they fund their own care.” The Government has also stated that local authorities should provide personal budgets to everyone eligible for ongoing social care, preferably as a direct payment, by April 2013. NHS Operating Framework for England 2012/13 The NHS Operating Framework for England 2012/13 (published by the Department of Health in November 2011) reiterates earlier commitments to carers and states the following: “Carers play a vital role in our system and must receive help and support from local organisations. Following a joint assessment of local needs, which should be published with plans, PCT [Primary Care Trust] clusters need to agree policies, plans and budgets with local authorities and voluntary groups to support carers, where possible using direct payments or personal budgets. For 2012/13 this means plans should be in line with the Carers Strategy and: • • • • •

be explicitly agreed and signed off by both local authorities and PCT clusters; identify the financial contribution made to support carers by both local authorities and PCT clusters and that any transfer of funds from the NHS to local authorities is through a section 256 agreement; identify how much of the total is being spent on carers’ breaks; identify an indicative number of breaks that should be available within that funding; and be published on the PCT or PCT cluster’s website by 30 September 2012 at the latest.”

The Department of Health’s Carers’ Break Guidance 2008-2011 states that a ‘breaks service’ is one which actually gives the carer a break from direct responsibility of supervising or caring for the relevant person by providing a service to that person. A breaks service must always aim to provide a positive experience for the service user as well as a break for the carer. The Guidance states that services provided in an emergency, such as when a carer is hospitalised, or simply to allow the carer to visit the doctor or dentist, should not be regarded as a breaks service but as a core element of supporting the cared for person and carer. Breaks should be about carers having some time for themselves.

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LINCOLNSHIRE POLICY Lincolnshire Strategy for Carers: Every Carer Matters – The Next Three Years 2010-13 The Lincolnshire Strategy for Carers covers the period 2010-13, and in order to engage and respond to carers, the Lincolnshire Strategy for Carers has identified four types of carer: ¾ Young Carers – Carers under the age of 18. ¾ Young Adult Carers – Carers aged 18 to 25 years. ¾ Parent Carers – Carers over 18 caring for a young person (under 18 or going through ‘transition’). The term parent carer can include any other relative or a guardian, who care for a person under 18 or going through transition. ¾ Adult Carers - Carers over 25 caring for another adult. The strategy identifies seven outcomes for carers: • • • • • • •

Carers stay healthy. Carers are in control. Carers are valued. Carers have a “life of their own”. Carers are respected. Carers are included and involved. Carers are confident in the future.

Under these seven outcomes, the strategy includes a detailed list of 74 actions across the four groups of carers. The strategy does not directly include an action relating to the development of personal budgets, but this is implicit in the seven outcomes, in particular in the outcomes for carers to be in control, be valued and to have a life of their own. Lincolnshire County Council Business Plan 2012-15 On 17 February 2012, the County Council approved its Business Plan for 2012-15. The Business Plan contains the following commitment: “Carers’ needs are assessed to help them enjoy their own lives whilst caring for others.” The Business Plan includes a target that by 31 March 2013 70% of carers known to the County Council will receive a needs assessment or a review, and a specific carer’s service, or advice and information.

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Recommendation 2 We are pleased to see the importance given to carers in the County Council’s Business Plan for 2012-15. We acknowledge the devotion and good will of all the carers in Lincolnshire and we believe that support for carers should continue to be emphasised in all the relevant policies and decision making of the County Council.

CARER’S NEEDS ASSESSMENT Carer’s Needs Assessment It has been stressed to us that the carer’s needs assessment is not solely focused on the carer’s eligibility for a carer’s personal grant. There are a number of other outcomes, such as benefits advice and training, which are also offered. The carer’s needs assessment also offers emotional support, which can be just as important as the financial support. We were told by the carers we spoke to that just finding out that they were not alone was a form of reassurance. We were also told that the assessment process was “carer friendly”. In Lincolnshire most of the carers’ needs assessments are undertaken by the County Council, via the Carers Team in the Customer Service Centre. We understand that most assessments are undertaken over the phone and one of the carers we spoke to told us it can take up to 40 minutes. Carers can also have their assessment face to face, in which case it is undertaken by “trusted assessors” on behalf of Lincolnshire County Council. The trusted assessors include several of the voluntary and third sector organisations, who work with and support carers. The carer’s assessment form has been designed for carers by carers. The form requests information from the carer about the person (or persons) they care for; the amount of time they care; and some details on the type of care provided. The form invites carers to identify the impact of their caring role on most aspects of their life. A key outcome from the carer’s needs assessment is the completion of a carer’s support plan. All the carers we spoke to who had a carer’s needs assessment indicated that the staff had been pleasant and supportive in undertaking the assessment. However, two of the carers we spoke to were reluctant to go through the process of a carer’s assessment. We respect the privacy of the individuals concerned. In relation to entitlement to a carer’s personal grant, we understand that the Resource Allocation System is based on a national model. Depending on the level of need, the carer is assessed with a score from 0 to 100. Where a carer scores 42 points they receive the minimum level of the carer’s personal grant, at £124.64 per year. This increases on a sliding scale to the maximum award of £292.00 per year. To receive the maximum the carer would need to be assessed at 100 points. Three examples of completed Carers Support Plans are listed in the Appendix B.

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FUNDING AND TAKE UP OF CARER’S PERSONAL GRANTS How Many Carers Receive a Carer’s Personal Grant in Lincolnshire? The following table shows the number of carers in receipt of self directed support (including carer’s personal grants) in each of the last four years and the overall budget allocated at the beginning of each of these years: Year

Number of Carers

Budget Allocation

2008/09

1,624

£461,000

2009/10

2,012

£479,000

2010/11

2,982

£650,000

2011/12

2,416 (2,900*)

£650,000

* Financial year-end estimate Up to the end of January 2012, 2,416 people have received a carer’s personal grant and it is estimated that this figure will have risen to around 2,900 by the financial year end in April. In terms of the funding that has been distributed, the current total is approximately £505,000 for this financial year with an anticipated final total of £606,000. Although the final amount to be distributed is less than the budget this is not unusual. A small amount of contingency is built into the budget allocated in order to ensure that any additional requests for carer’s personal grants can be met from the budget allocated for that year. The total budget allocation for 2011/12 for carer’s personal grants is £650,000. As stated in the previous section, the maximum allocation for a carer’s personal grant is £292 and the minimum is £124.64. This is dependent on the level of need of the carer. Recommendation 3 We recognise the importance of carer’s personal grants and the very positive impact these have. We also recognise the increasing number of people who are receiving these grants. We recommend that the Executive take into account these factors when considering future funding to ensure that the carer’s personal grant is accessible to all those people who require it and the level of each grant allocated is maintained at current levels or increased. Eligibility for a Carer’s Personal Grant Adult carers and young adult carers are eligible to receive a carer’s personal budget, depending on their level of need. Parent carers and young carers are not eligible. We understand that parent carers may be excluded because they may have alternative support mechanisms. There may be practical reasons for not issuing carer’s personal grants to young carers, but we would like the policy to be clarified, although we acknowledge the current funding constraints. 13

Recommendation 4 We acknowledge the current budgetary constraints, but we would like the Executive to consider clarification of the reasons for the present policy whereby parent carers and young carers are not eligible for funding for a carer’s personal grant. What Can a Carer’s Personal Grant Be Used for? The Carer’s Personal Budget is linked to the actions agreed in the Carer’s Support Plan. In Lincolnshire carers are offered the following guidance on how to use their budget: • • •

“You can’t spend it on anything that exposes you to serious physical or financial risk. You can’t spend on anything illegal or on gambling If you are living in a supported tenancy where the support is part of the tenancy agreement, you can’t use your Personal Budget to pay for this support. “

“Examples below show activities to help your social life or provide a break from caring: • Help with going on holiday • Going to sporting events, concerts etc. • Going on day trips out • Training and educational costs • Driving lessons • Pampering and wellbeing sessions.”

We did not hear from the carers we spoke to any observations that they were overly restricted in how they could use the budgets.

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THE VIEWS OF CARERS ON CARER’S PERSONAL GRANTS The National Picture The National Audit Office report (Oversight of User Choice and Provider Competition in Care Markets – 15 September 2011) states that 73% of carers preferred a direct payment, as opposed not to having a choice in their break. The Views in Lincolnshire Each quarter in Lincolnshire, a survey is undertaken with a selection of carers, the purpose of which is quantify and evaluate public perception of how they feel about the service they receive. These surveys are conducted over the phone by the Customer Service Centre and are referred to as Touchstone reports. Here is a selection of comments relating to carer’s personal grants from the September 2011 Touchstone Report: “The grant was nice to receive and unexpected which made me feel valued.” “The grant has enabled me to have a sewing course on this occasion.” “I’ve had my hair done and I’m getting a therapist to help ease my neck and back pain.” “I feel so much more valued as a carer, as society often forgets about the carer and focuses on the cared for.” “I’ve been able to spend valuable time with my daughter.” “I’ve had some evenings out with my friends, which helped to improve the quality of my life.” “I’ve bought some talking books.” “I spent the money on having a series of eight therapeutic massages. I went once a week for eight or nine weeks. It was such a help in relieving stress” The Touchstone survey is a telephone survey, which is the preferred method of contact for carers. We also wanted to engage directly with carers and spoke to two groups of carers: one group in Skegness and the other group in Lincoln.

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Our Engagement with Carers Our first direct engagement with carers was when three members of the Task and Finish Group (Councillors John Marriott, Paul Carpenter and Mrs Charlotte Farquharson) attended a meeting of the Lincolnshire Carers Partnership on 6th October 2011, at Morton Village Hall, Gainsborough. Among the carers present at the meeting were several young carers. This meeting also included representatives present from Age UK, Jobcentre Plus, Carers Connect and NHS Lincolnshire, in addition to the County Council officers and Councillor Graham Marsh, the Executive Councillor for Adult Social Care. We also met with two small groups of carers, firstly in Skegness on 24th November and secondly in Lincoln, on 7th December 2011. We wanted very much to meet carers face to face, but we appreciate that many carers are unable to come to meetings and prefer contact by telephone. What Did the Carers Tell Us? Most of the carers we spoke to had received a Carer’s Personal Grant in the form of a direct payment. We heard about some delays in the carer’s assessment process, but we understand that these delays are being addressed. Where there are still delays, there is a fast track process for end of life care cases and cases of carer breakdown, which is a common occurrence. One carer confirmed that within a few weeks of the review, the carer’s personal grant had been sent to her in the form a direct payment. Benefits of Choice and Flexibility The carers we spoke to provided us with a variety of examples of how they used the budget; and we list these examples below: ¾ ¾ ¾ ¾ ¾

contributions to the costs of a holiday; purchasing two hours of respite care each week; purchasing a new dress and going out for a meal; making basic repairs to a car; contribution to the costs of driving lessons.

In each case the personal budget was used in different ways, which accords with the carer’s personal grant principle of choice and decision making being in the hands of the carer. Carers stated that the carer’s personal grant allocation was not necessarily the most important outcome of the carers assessment, as money cannot buy everything. However, the carer’s personal grants were welcome, as they provided carers with the choice of how to use the money. One of the carers we spoke to referred to what appeared to be a standard letter from Adult Social Care which advised that it was necessary to keep receipts. We were told that some carers would worry about this. We recognise it is important for Adult Social Care to ensure that carer’s personal grants are used as intended and receipts would be evidence of this, but this requirement appears to be a drawback, as some carers might find this a challenge. 16

Recommendation 5 We recognise the importance of ensuring that Carer’s Personal Grants are used as intended. However, following comments made to us regarding keeping records and receipts, we recommend that consideration is given to a more lighttouch monitoring arrangement, so that carers are not unduly worried or put under pressure. Payment of the Carer’s Personal Grant Where a carer receives a carer’s personal grant in the form of a direct payment, they receive a single sum at one point in the year. In one of the sessions we had with carers, we discussed whether the single annual payment of the carer’s personal grant was the best method. The carers said you would have to balance what benefits could be provided on a quarterly basis (with a quarter of the annual sum) of the carer’s personal grant and that the lump sum might be more useful in many instances. Again, the emphasis was on personal choice and flexibility. Awareness Raising We asked the carers we spoke to how they had become aware of the variety of support available for carers. Several carers referred to leaflets being available in hospital or in GP surgeries. Another carer referred to seeing a notice on a charity’s notice board and one carer had been given a leaflet at a monthly charity carers’ lunch. However, another carer we spoke to indicated that rather than be directed to support, she had to seek it out. Other Issues Raised by Carers Carers were complimentary of the support that they received from the Carer’s Team in the Customer Service Centre. Two of the carers we spoke to referred to loneliness and isolation. We were told that sometimes you just needed someone to talk to, even just on the phone. Another carer told us that it was hard to maintain other relationships when performing the role of a carer and that some people had just stopped being friends. We were also told about feelings of guilt: “What happens if I go out or I am away for a while?” We understand that some support networks are available to carers, for example one carer referred to getting a phone call every Thursday from Age Concern. The carer said that these chats were very helpful Our terms of reference do not extend to the level of support provided by the NHS and GPs to carers, although we heard one story of a GP not being supportive, but we were told that a project was underway with GPs in order to raise awareness of the needs of carers. We were also told that carers support groups often had to pay to use venues for meetings. We recognise that voluntary organisations need to have suitable, local

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venues to hold meetings and that this may be something that the county council can assist with. Recommendation 6 We were touched by some of the stories we heard from carers, in particular the feelings of loneliness and isolation. We believe that more should be done to tackle these feelings of loneliness and isolation. We would like to recommend that the following suggestions are explored: (a)

the possible development of a 24/7 carer to carer “buddy” phone line, to enable carers to provide mutual support and to share experiences; and

(b)

exploring whether the County Council’s facilities, such as rooms in local libraries, could be used to provide venues for local carers support groups, at either a reduced rate or free of charge.

OTHER SUPPORT FOR CARERS Lincolnshire Carers Partnership

We have also considered the activities of the Lincolnshire Carers Partnership. This partnership brings together carers and several organisations that provide support to carers. The Partnership meeting is open to all carers in the county, who are known to the County Council. Approximately 150 carers participate in the Partnership’s meetings, its working groups or electronically. On 6 October 2011, several members of the Task and Finish Group attended a meeting of the Lincolnshire Carers Partnership. The Partnership meeting’s main item of business was a discussion on how the Partnership would move forward. The item involved consideration of a series of options on how the partnership would be structured and supported in the future. This also included how consideration on how the partnership would be funded.

Pauline Mountain and Frank Blades Lincolnshire Carers Partnership

The discussion also covered some of the constitutional issues. This was an indication of the partnership moving from an informal basis to a more formal footing. 18

The Lincolnshire Carers Partnership had received the Skills for Care Accolade 2010 for Partnership Working.

A Meeting of the Lincolnshire Carers Partnership On 16 September 2011, the County Council allocated funding of £50,000 per year over two years, to enable both the Lincolnshire Carers Partnership and the Lincolnshire Young Carers Partnership to expand current support services, to promote the carers’ agenda, raise awareness of carers’ issues and to continue supporting carers to take the lead in addressing their needs. We particularly support the allocation of this funding to support the development of the Partnerships. We understand that the County Council’s funding is time-limited. So far, the funding has been used to appoint a Carers’ Development Manager and a Carers’ Operations Manager. We look forward to further developments in this area.

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Recommendation 7 We fully support the County Council’s decision of 16th September 2011 to provide funding of £50,000 per year over two years, to develop both the Lincolnshire Carers Partnership and the Lincolnshire Young Carers Partnership. We recognise that the County Council may not be able to maintain this level of funding beyond the two year period and we recommend that the Council looks to provide additional forms of support such as offering its advice and expertise in order to help the partnerships develop further and to raise additional funds. Education, Employment, Learning and Leisure Scheme The Education, Employment, Learning and Leisure Scheme (EELLS) is operated by Carers Connect on behalf of the County Council. EELLS has been in operation since 2009 and costs £46,000 per year. These are examples of some of the initiatives provided by EELLs: • • •

Moving and Handling Course – This covers the principles of safe moving and handling, including back care awareness, risk assessment, avoiding unsafe practices. Managing Difficult Behaviour – This five day course covers Attention Deficit Hyperactivity Disorder, Autism and Asperger’s Syndrome. Dementia – This course focuses on signs of dementia, symptoms and common difficulties, communication.

Who Cares for You! Who Cares for You! are free lifestyle courses for carers, aimed at building confidence, providing information on a range of practical ways for carers to cope in their caring role. Each course comprises eight two hour sessions each week and begin at different times of the year. For example, four courses began in January 2012 in Boston, Sleaford, Horncastle and Gainsborough. The courses are delivered by Hopelinks on behalf of the County Council and Carers Connect. Recommendation 8 We were very impressed with the work of the Education, Employment, Learning and Leisure Scheme (EELLS), the “Who cares for you” initiative and other work ongoing to help prevent more significant problems for carers later on. We recommend that the Council continues to work with the Lincolnshire Carers Partnership to develop and support existing and new preventative strategies. The Carer’s Allowance (From the Department of Work and Pensions) We would like to emphasise that the Carer’s Allowance from the Department of Work and Pensions is aimed at providing basic financial support to the carer. This contrasts with a Carer’s Personal Grant from the County Council, which is aimed at providing carers with a break and some time for themselves. We would not want people to feel that these two sources of funding for carers duplicate each other.

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To receive the Carer’s Allowance from the Department of Work and Pensions, carers need to be 16 years or over and spend 35 hours per week caring for a person in receipt of certain benefits such as the Attendance Allowance (65 years and above) or the Disability Living Allowance (below 65 years old). We were told that the Attendance Allowance is notoriously under claimed. The Carer’s Allowance is paid at £55.55 per week (2011/12). Net income above £100 per week can exclude carers from receiving the Carer’s Allowance. However, even if carers do not receive the benefit, they may be awarded an “underlying entitlement”, which may provide access to other benefits and support. We understand that in Lincolnshire over 13,500 carers have “live cases” with the Department of Work and Pensions. Carers UK, a national charity, has also estimated that there is over £10 million in unclaimed Carer’s Allowance in Lincolnshire each year. The Government’s intention is that from October 2013 the “Universal Credit” will replace many existing benefits. However, several benefits, including the Carer’s Allowance, will remain separate from the Universal Credit. Carer’s Credit A carer’s credit is available to people who provide care for one or more disabled person(s) for a total of 20 hours or more each week, where they do not currently receive carer’s allowance. The carer’s credit is not an allowance, but will help to protect an individual’s National Insurance record to ensure there are no gaps from having to undertake caring responsibilities. There are two qualifying routes to be able to get Carer’s Credit, either through the disabled person being entitled to a qualifying benefit or through a certification route.

PERSONAL BUDGETS IN OTHER AREAS In January 2012, the Princess Royal Trust for Carers and the Crossroads Care jointly produced their own research report on how personal budgets for carers are handled in different local authority areas. Who Gets Personal Budgets? The report found that 63% of local authority areas provide personal budgets to carers. 56% of the authorities providing personal budgets do so following a carer’s assessment. In the remaining local authority areas, personal budgets are paid to carers following a referral from a social worker, health worker or GP. In some cases they are administered by a third party. The report found that some local authorities base the carer’s eligibility for a personal budget on the eligibility of the person cared-for, rather than the carer’s own level of need. We are pleased that eligibility in Lincolnshire relies on the carer’s own needs.

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How Much do Carers Receive? The report found that in most cases personal budgets are allocated to carers in two ways: firstly, by using the Resource Allocation System, offering varying amounts; secondly, by matching carer’s needs against tiered levels of budget, depending on their need. In a small minority of cases, a single amount was given to all carers. The research by the Princess Royal Trust for Carers and Crossroads Care indicated that a single annual payment is by far the most common way that carers receive a personal budget. The report provides the following opinion on this approach: “We think that this is symptomatic of an approach that does not recognise a need to provide on-going support for carers and suggesting that support is only offered when a crisis point is reached. A downfall of this approach could be that the impact of the personal budget may only provide short term, immediate benefit rather than on-going support that sustains the carer. However, it should be acknowledged that some carers are purchasing equipment that can provide lasting benefit and even a one-off break can provide lasting benefit that sustains the carer for months afterwards.” However, the report notes that some local authorities offer the option of paying a personal budget to the carer in instalments, for example monthly or quarterly, during the course of the year. The report alludes to the approach in Lincolnshire, whereby personal budgets were paid as a single payment or used to access specific services through the Education, Employment, Leisure and Learning Scheme.

SAFEGUARDING There is a clause in our terms of reference that relates to safeguarding. For this we have focused on the carer. The Lincolnshire Safeguarding and Dignity Policy contains a definition of an “adult at risk”. The relevant extracts of the definition are set out below: “an adult at risk is a person aged 18 or over and who is eligible for, or receives, any adult social care service (including carers’ services) provided or arranged by a local authority or; receives direct payments in lieu of adult social care services; and “is at risk of significant harm, where harm is defined as ill treatment, or the impairment of health or development, or unlawful conduct which appropriates or adversely affects property, rights or interests (for example theft, fraud, embezzlement or extortion)” We note that the definition of an adult at risk extends to a carer in receipt of services. The information we received on the carer’s assessment suggests that safeguarding and dignity issues form part of the carer’s assessment. ADULTS SCRUTINY COMMITTEE February 2012 22

APPENDIX A LIST OF CONTRIBUTORS, ACTIVITIES AND DOCUMENTS REVIEWED Contributors Carers Laura Blaine Lynda Freeman Jenny Gammon

Selection of Carers in Lincoln and Skegness Carers Team Co-ordinator, Customer Service Centre, Lincolnshire County Council Service Delivery Manager, Customer Service Centre, Lincolnshire Project Manager, Carers Connect

John Gurney Liz Isherwood

Member of the Lincolnshire Carers Partnership Partner Support Manager, Lincolnshire, Department of Work and Pensions Emma Krasinska Commissioning Manager for Strategic Development, Lincolnshire County Council Pauline Mountain Chair of the Lincolnshire Carers Partnership Simon Murphy Commissioning Support Officer, Lincolnshire County Council Task and Finish Group Meetings 30 August 2011

Introductory Meeting. Information received on: ¾ Personal Budgets for Carers ¾ Local Policies for Carers ¾ National Policy and Reports

6 October 2011

Meeting with Lincolnshire Carers Partnership in Gainsborough

18 October 2011

Information received on: ¾ Carer’s Allowance ¾ Lincolnshire Carers Partnership ¾ National Policy and Reports

24 November 2011 Meeting with Carers in Skegness 7 December 2011

Meeting with Carers in Lincoln

15 December 2011 Information received on: ¾ Assessment Process ¾ Touchstone Report ¾ Views of Carers 5 January 2012

Assessment of Information received to date and Views on the Content of the Draft Report

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8 February 2012

Consideration of Draft Report and Proposed Amendments to the Report

17 February 2012

Consideration of Amendments to Draft and Preparation of the Report for the Adults Scrutiny Committee List of Documents Reviewed

National Documentation (1) (2) (3) (4) (5)

Financial Management of Personal Budgets – Challenges and Opportunities for Councils (Audit Commission, October 2010) Oversight of User Choice and Provider Competition in Care Markets (National Audit Office, 15 September 2011) Valuing Carers 2011 Calculating the Value of Carers’ Support (Carers UK – May 2011) Carer’s Allowance Information – Department and Work and Pensions Website: ¾ Carer’s Allowance Payments in Lincolnshire February 2011 and May 2011 A Review of Personal Budgets for Carers (The Princess Royal Trust for Carers and Cross Roads Care – January 2012)

Local Documentation (6) (7) (8) (9)

(10) (11)

Personal Budgets for Carers Scrutiny Review 2011/12 (Introductory PowerPoint Presentation – August 2011) A to Z – Improving Information for Carers (Lincolnshire Carers Partnership) Lincolnshire Strategy for Carers – Every Carer Matters – The Next three Years 2010-2013 (Lincolnshire County Council and NHS Lincolnshire – October 2010) Carer’s Assessment Form (Lincolnshire County Council, Rethink, Action for Young Carers, Age Concern, Carers Connect, Alzheimer’s Society, Lincolnshire Partnership NHS Foundation Trust) Letter from Jenny Gammon, Project Manager, Carers Connect Lincolnshire – 21 November 2011. Carers Assessment – Touchstone Survey Results – September 2011

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APPENDIX B

Carers Support Plan – Example 1 Outcome My Health

Actions

Actioned by whom

Think about what you have discussed during your carers assessment. What is important to you and what will help you in your caring role? I am applying for support with an adjustable bed from The Glasspool Glasspool application Charity trust to help both F and T have a better nights sleep. submitted by JW I am referring F for a 'Who cares for you?' Course when there is one in Referral completed by JW Sleaford

A life of my own

F and T agreed to a referral to Adult Social Care for a possible smart care appointment to look at chair raisers and a perching stool to help T to be a little more independent. F would like to learn to drive for which I am referring F for through EELLS for a taster session of driving lessons.

Smartcare clinic attended Perching Stool, Grab rail for bathroom and Chair raisers provided. Referral submitted to EELLS by JW

Confident in the future

We discussed CERS and I am sending F the information so he can discuss with T what they want to do.

CERS plan completed by JW

Feeling Valued and Respected In Control

F is aware he can call me anytime he needs any support, information or F advice relating to his caring role.

Information and Involved

I have given F the details of the Sleaford Carers Group meetings for him to F go along to.

Financial wellbeing

F would like to use his Carers Personal Budget of £189.80 towards a holiday or few days to give him a change of scenery, a chance to have a break and a chance to relax. F said that he may use some for a few driving lessons.

Carers Support Plan – Example 2 Outcome My Health

Actions

Actioned by whom

Think about what you have discussed during your carers assessment. What is important to you and what will help you in your caring role? Telecare information for J and K to have a look at. Info sent by JW J said that they have had previous OT assessments but quite a few years ago. J said that K agreed to a referral to ASC for an OT assessment. Smart Care appointment offered

Clinic

A life of my own

We discussed a referral to EELLS for a pampering session, J said that she Referral completed by JW think about it and let me know if she wants me to go ahead.

Confident in the future

I am completing a referral to Carers Connect for full benefits entitlement check. I am sending J a Family Fund application form, Information about short breaks and an application form for Disability Lincs.

Referral completed by JW Application forms sent carer

Feeling Valued and Respected

We discussed CERS and I am sending the information for J to discuss with Carer to get back to JW K. J will let me know if she wants to complete a plan.

In Control

J is aware she can call me any time she feels she needs any support, information or advice relating to her caring role.

Information and Involved Financial wellbeing

J said that she would like to use her Carers personal Budget of £189.80 towards having her hair done, some meals out and some days out throughout the year. This would give J an opportunity to have a break, a bit of pampering and a chance to recharge her batteries.

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to

Carers Support Plan – Example 3 Outcome My Health

A life of my own

Actions

Actioned by whom

Think about what you have discussed during your carers assessment. What is important to you and what will help you in your caring role? M said that she found her CERS plan invaluable when she collapsed and Carer to keep updated was grateful for the support. M agreed to a referral to The Respite Association for additional support with funding respite care for F.

Application completed by JW

I am sending M an application form for Disability Lincs for support with funding a holiday.

Application fund form sent to carer by JW

M agreed to a referral to EELLS for a pamper treat session.

EELLS referral completed by JW

I am sending M an application form for Glasspool Charity trust to apply for an adjustable bed for F which would help M to get good nights sleep.

Confident in the future

We checked and amended M's CERS plan as needed.

Feeling Valued and Respected In Control

M can aware she can call me anytime she needs any support, information or advice in relation to her caring role.

Information and Involved Financial wellbeing

M said that she would like to use her personal budget of £262.80 towards a holiday, a few days away. To give M a chance to have a break, a change of scenery and a chance to recharge her batteries. M said that this break is vital to her continuing in her caring role. 27

Application form sent to carer to complete and return to JW

APPENDIX C GLOSSARY OF TERMS Term

Definition or Explanation

Adult Carer

Adult Carer is a term used in Lincolnshire to describe carers over 25 who care for another adult

ASC

Abbreviation for Adult Social Care

Carer’s Allowance

The Carer’s Allowance is a benefit paid to eligible carers by the Department of Work and Pensions.

Carers Emergency Response Service

This service provides a carer with a 24-hour emergency telephone line number and a unique identity number linked to the carer’s agreed emergency plan.

Carer’s Needs Assessment

All carers are entitled to receive a carer’s needs assessment from Lincolnshire County Council as their local authority.

Carer’s Personal Grant

This term is used throughout this report to describe personal budgets for carers

Carer’s Support Plan

Following a carer’s needs assessment, a carer’s support plan is developed for each carer.

CERS

Abbreviation Service.

Direct Payment

Direct Payment is a form of personal budget, where the payment is paid directly to the carer (or service user)

Education, Employment, Learning and Leisure Scheme

This is a Lincolnshire scheme aimed at providing support or carers to develop their education, employment, learning and leisure opportunities.

EELLS

Abbreviation for Education, Employment, Learning and Leisure Scheme

OT

Occupational Therapist

Parent Carer

Parent Carer is a term used in Lincolnshire to describe carers over 18 who care for a young person under 18 or going through ‘transition’

PCT

Abbreviation for Primary Care Trust

PCT Clusters

As part of the transitional arrangements in anticipation of the implementation of the Health and Social Care Bill, the 151 primary care trusts in England have been grouped into 50 PCT clusters. Owing to its size, NHS Lincolnshire continues as the PCT Cluster for the county of Lincolnshire.

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for

Carers

Emergency

Response

Term

Definition or Explanation

Personal Budget

A Personal Budget is an allocation of funding given to a person to on an agreed support plan. It can be in the form of a direct payment to the person or an allocation of funding managed on behalf of the person by the Council or a third party.

Personalisation

The term Personalisation is used to describe all the arrangements and processes supporting the implementation of personal budgets.

Primary Care Trust

Primary Care Trusts are part of the NHS. Their functions include the commissioning of primary, community, and secondary care from NHS and other providers. NHS Lincolnshire, which is also known as Lincolnshire Teaching Primary Care Trust, is the Primary Care Trust for the county of Lincolnshire

Section 256 Agreement

Section 256 of the National Health Act 2006 allows Primary Care Trusts to enter into arrangements with local authorities to carry out activities with health benefits.

Young Adult Carer

Young Adult Carer is a term used in Lincolnshire to describe carers aged between 18 and 25 years.

Young Carer

Young Carer is a term used in Lincolnshire to describe carers under the age of 18

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