At a glance 10: Personalisation briefing: Implications for carers
This briefing has been co-produced with Carers UK.
Published: December 2012
Personalisation for carers means:
- Carers in this context are those people who provide unpaid care for family members and friends.
- Personalisation is about giving people much more choice and control over their lives and the support they receive. Carers are also entitled to support services in their own right.
- Personalisation should make it easier for carers to access information and advice.
- Personal budgets and direct payments are designed to give people who use services and their carers more independence and freedom of choice. Eligible carers can have their own personal budgets and direct payments.
- A carer’s assessment is separate to any assessment of the person cared for.
- Personalisation for carers means ensuring all citizens have access to universal community services and resources such as health, transport and leisure.
This At a glance briefing explains what personalisation means for carers. Carers are people who provide unpaid care by looking after ill, frail or disabled family members or friends.
It is important that carers understand and can have input into the changes to care and support services that are happening as a result of personalisation. This is because carers are affected by, and often help organise, the care and support of the people they look after. Carers are also entitled to support services in their own right.
How are personalised services different?
The traditional service-led approach has often meant that people have not received the right help at the right time and don’t always get a say in the support they receive. Personalisation is about giving people much more choice and control over their lives. So, rather than having little or no choice or influence, people requiring support and their families are assisted to manage their own support needs in the way that suits them best, choosing the assistance they need from a range of good-quality, local services.
Personalisation is about giving people much more choice and control over their lives.
On a practical level, this should mean that you find it easier to get information and advice to help you make caring and the rest of your life easier. You may receive help applying for benefits or getting in touch with a local support group, or being advised about home adaptations to help keep the person you care for safe.
For those who are eligible for services from their local authority, personalisation should also mean that rather than receiving traditional services, you or the person you care for are given a personal budget or direct payment, and information about the different ways you can be supported to use these funds to meet your needs.
If the person I care for is not eligible for care services from our local authority, will we benefit from personalisation?
Even if the person you care for is not eligible for support from your local authority to help meet the costs of support services, having a wider range of local services to choose from should help make it easier for them to find support that suits you both.
You should also be able to access and use universal information and advice services to help you plan and find appropriate local support, regardless of whether the person you care for meets the financial eligibility requirements for other types of support.
As a carer, you may have rights that are not dependent on whether or not the person you care for meets financial eligibility for support. What you can access personally as a carer is explained in more detail below.
What changes to my support and the support of the person I care for should I expect from personalisation?
The introduction of personalisation should lead to changes in the ways you access, plan and purchase support for you and the person you care for.
Personalisation and support for carers
Information, advice and universal services
The changes to care and support brought about by personalisation should mean that you find it easier to access information and advice - for example, information on how to access benefits or training opportunities, or on buying services for the person you care for. You should also find it easier to get information on how to contact useful local community groups and community-based support services such as carer support groups. These developments should benefit all carers, including those who may not be eligible for other forms of support.
As a carer, you are entitled to request a carer’s assessment, which is separate to any assessment of the person you care for and takes account of your needs, as a carer. You can request a carer’s assessment even if the person you care for is not eligible for local authority funding for all or some of their support. Traditionally, carers’ assessments could only be accessed via local authority social services. However, in some areas, you can now request and complete a carer’s assessment though a commissioned carers service or other commissioned community service. This approach has developed in order to provide more choice for carers and to make it easier to receive a carer’s assessment.
If a local authority is alerted to the fact that you are, or are likely to, provide substantial care and are or will be doing this regularly, then it has an obligation to tell you that you have the right to request a carer’s assessment.
In line with personalisation, you may be offered the choice of completing a carer’s self-assessment. This means that you assess and record your own experiences and needs as a carer and the outcomes you want to achieve. This approach recognises that you are the expert on what your needs are and how they can best be met. Your self-assessment will then be reviewed and used to establish your needs and whether you are eligible for support. You should also be offered support and advice to help you complete your self-assessment.
The support offered as a result of a carer’s assessment varies depending on your level of assessed need and the local authority area in which you live. Once the local authority has decided how much support it can provide, you need to make decisions about how you would like to receive this support. As a result of personalisation, you may be offered different options in terms of how you access support. Some of these are outlined below.
Support planning is a useful opportunity to identify your needs and the outcomes most important to you, and to link up with the local services that will be able to support you. This should not just include services you need to purchase, but also any local authority-provided, community and user-led support that you can access without charge - for example, local authority housing advice, access to emergency respite services and information on local carer support groups.
One-off direct payments
In some areas, carers can access annual one-off direct payments to buy a break from caring or to make their lives easier and depending on assessed needs and circumstances - for example, a short holiday, membership of a leisure centre or equipment such as a bicycle or washing machine. What can be purchased with a direct payment varies according to local guidelines.
In some areas, carers with assessed eligible needs can be provided with a personal budget which they can use to meet their needs as a carer. Carers can choose to access their personal budget as a direct payment or by other means, described in more detail below.
Carer support as part of the support for the person you care for
Some carers look after someone who receives support from a local authority. Depending on need and circumstances, respite for carers may be included as part of the total package of support provided to the person they are caring for. For this group of carers, the introduction of personal budgets for the person they care for means changes to the support they receive as a carer. Rather than getting standard respite services, carers can choose to access support via a direct payment or other means and have more control over the form and commissioning of such support.
Personalisation and support for the person you care for
The right to an assessment of needs remains in place. However, you may notice differences in the way assessments are conducted. For example, the person you care for may be offered a self-assessment. The purpose of this approach is to give people and their families more control and to recognise that they are experts in their own support needs.
You may also notice changes to how support is planned and purchased. Both you and the person you care for may have more opportunity to explain what is most important to you and what you need, and to plan support that takes this into account. Another difference to traditional ways of delivering support is that, if the person you care for is eligible for support, they will have a personal budget.
The person you care for should be given choices about how they use their personal budget
The person you care for should be given choices about how they use their personal budget. For example, they may be able to take a direct payment to purchase support themselves or through a broker or individual service fund. A person can also choose for the local authority to continue to manage their care.
If the person you are looking after is arranging care for themselves independently of their local authority or you are undertaking this on their behalf, then getting advice about the support available, its quality and its cost will be important. In many areas, carer services and local community organisations relevant to the condition of the person you care for (e.g. user-led organisations and peer support groups) are good sources of information and advice about planning support and what is available locally. Social services staff at the local authority should also be able to provide information that will help you arrange and pay for care independently.
People have found that the availability, range and quality of this advice from local authorities may be variable. This should improve in the future. It is a priority of the Government’s social care reforms to improve the information services of local authorities. The Government has also pledged to create a national information portal on health and social care.
Help in understanding more about the quality of local services is also available from the Care Quality Commission (CQC) (the regulator of care services), Counsel and Care and the Elderly Accommodation Counsel. Their contact details are provided at the end of this briefing.
I’m a carer and I have been told I am eligible for a personal budget - what does that mean and what happens next?
It is very common for people to get confused by the new words and phrases they hear when first learning about personalisation. Don’t be afraid to ask what unfamiliar terms mean.
A personal budget is an overall amount of money that is available to someone from their local authority to pay for their assessed support needs. A personal budget could be allocated to you, as a carer, or to the person you care for. Your local authority should have a system to work out how much your personal budget needs to be in order to meet your eligible needs, often called a resource allocation system (RAS). The amount of money estimated is sometimes called an indicative budget. This indicative amount is used to plan support, but is not final until the local authority reviews and confirms the budget and the support plan.
If you do not agree with the amount the local authority believes is required to meet your needs or the needs of the person you care for, ask how the amount was calculated. If you still don’t agree, there will be a formal procedure in place for resolving the disagreement.
I have been given a personal budget, but do I have choices about how I access it?
You should be given choices about how you access a personal budget. Common options are described below.
- A direct payment: a cash amount paid directly to a person or to someone else they trust, to arrange their own support.
- An individual service fund: a person can make an agreement with an organisation to manage some or all of their personal budget on their behalf. The person transfers the personal budget to the organisation and the organisation provides services or accesses them from other organisations.
- A managed budget: the local authority can hold some or all of a person’s personal budget which it will then use to pay for its own services, or services bought from other organisations.
Having more control over organising support means that there is more opportunity for families to secure services that best meet their needs.
Will managing a direct payment and buying services for myself and the person I care for mean more work for me?
Having more control over organising support means that there is more opportunity for families to secure services that best meet their needs. For example, directly employing care workers means that families can more easily arrange visits around their lives. Many carers report that having direct payments improves their lives, and the lives of the people they care for.
However, some carers have said that they find it difficult to deal with the administration of direct payments. They also say that it can be hard to purchase the services they need. This may be due to a lack of quality services in their area, or difficulties recruiting the right staff.
If you feel you need extra support to get the most from personalisation, there is help available. In many areas, local carers services and support groups are good sources of information and advice about planning support, and what support is available. See the further information section at the end of this guide.
You should also be able to ask your local authority social services department for advice and help with services such as brokerage and individual service funds (see above), which are designed to help you plan and purchase the care you need.
Reforms to improve personalisation
The Government is proposing reforms to social care which will encourage greater personalisation of services and make personalised services available to more people. It is also proposing reforms that aim to ensure there is a wider variety of support services available in local areas, so that people have real choice about their support. These reforms include:
- better national and local advice and information services
- local authorities to use a variety of providers so people have a wider choice
- proposals to extend personal budgets and direct payments to apply to health services
- new rights for carers to assessments and support following those assessments.
How to make personalisation work for you
If you are arranging and using personalised services for the first time, it is completely normal to feel confused about how it all works or to feel anxious about whether it’s the right thing for the person you care for. Here are some hints and tips to help you make sure that personalisation really works for both of you.
Decide what outcomes you both want
What do you and your family need? Do you have different needs within the family that have to be met? What other outcomes do you want as a carer? To work? To be able to visit family? Does the person you care for need to socialise a bit more? Are they interested in getting involved in the local community, but need support to do so? Or do you need basic help getting the person out of bed, dressed and washed?
In some cases, it will be important to think about how the care needs of the person you are looking after and your own needs might change over time and how this will affect what services you both require. It may be that a day care centre works well now, but in the future your home may need to be adapted and direct payments used to employ care workers in the home environment. Personalisation should enable you and the person you care for to change the way you are both supported over time so that your caring role does not get too stressful, your health does not suffer or you can continue working.
Are you being involved in the discussions about personalisation and the package of care for the person you are looking after?
Are you able to say how those plans will impact on you as a carer? This is important, whether you are funding the care yourself or if social services are looking at funding the care. If changes are being made to a care plan, do these make life easier for you or more difficult?
If the person you are looking after is unable to make decisions about buying in care, are you able to manage this?
If the care is being funded through the local authority, it should be ensuring that you are sufficiently supported in this role. Carers say that good advice is vital. Personalisation does not necessarily mean that you take on all the responsibility and all the work of managing care.
If you are managing a budget, is it sufficient to cover all the likely costs?
If you are employing staff directly, the budget should cover wages and associated employment costs like insurance and funding for contingency cover.
- Care Quality Commission (CQC)
- Carers Direct - A free information and advice service for carers. www.nhs.uk/carersdirect 0808 802 0202
- Carers Trust - The Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.
- Carers UK - Carers UK has developed an assessment guide to help you plan and think about what is important to you, what type of care you provide and what kinds of support your family might need. The guide assists with preparation for the carer’s assessment and can also be used to help you think more generally about personalisation. Carers UK has developed an online directory of local carer support - see Finding local carers support where you live.
- Counsel and Care
- Elderly Accommodation Counsel
- Find Me Good Care - Find Me Good Care helps people to make choices about care and support for themselves or other adults in England.
- In Control - In control is a national charity and a good source of information about personalisation.
- Young Carers Net - Part of the Carers Trust, this is a service providing advice and support for young people under 18.
- Implications for commissioners
- Implications for home care providers
- Implications for housing providers
- Implications for carers
- Implications for advocacy workers
- Implications for voluntary sector service providers
- Implications for personal assistants (PAs)
- Implications for user-led organisations (ULOs)
- Implications for residential care homes
- Implications for community mental health services
- Implications for for nursing homes
- Implications for people with autistic spectrum conditions and their family carers
- Implications for community learning disability staff
- Implications for occupational therapists
- Implications for social workers in adults’ services
- Implications for NHS staff
- Personalisation and mental capacity
- Implications of the Equality Act 2010
- Implications for lesbian, gay, bisexual and transgendered (LGBT) people
What is personalisation?
Personalisation means recognising people as individuals who have strengths and preferences and putting them at the centre of their own care and support. The traditional service-led approach has often meant that people have not been able to shape the kind of support they need, or received the right help. Personalised approaches like self directed support and personal budgets involve enabling people to identify their own needs and make choices about how and when they are supported to live their lives. People need access to information, advocacy and advice so they can make informed decisions. Personalisation is also about making sure there is an integrated, community-based approach for everyone. This involves building community capacity and local strategic commissioning so that people have a good choice of support, including that provided by user-led organisations. It means ensuring people can access universal services such as transport, leisure, education, housing, health and employment opportunities. All systems, processes, staff and services need to put people at the centre.