There is support available from local authorities (your council) for people living with a disability, which could enable you to have more control in your life and maintain your independence. If you could use some extra care and support, this guide will help you understand more about Adult Social Care and the assistance you can gain using Direct Payments. This information applies to England only.
‘Don’t be afraid of asking for help. It means you are being proactive by getting the help you are entitled to and ensuring you are living life to the full.’
What is adult social care?
Adult Social Care usually refers to the services and support offered to people in need of practical support due to disability, illness, old age or caring commitments. Adult Social Care services consist of support provided by social services professionals, including occupational therapists and social workers but also includes community based services and support such as care homes, day centres, home care services, assistive technology and aids and adaptations.
‘Contact local occupational therapy service, ask them for tips on how best to do daily tasks and for any equipment that would make daily living easier.’
‘I got to see an occupational therapist who got me hand splints made, handles in my bathroom, a shower chair, bed handle stick, crutches and gutter frame.’
Adult Social Care services also have a responsibility to safeguard vulnerable adults from harm or abuse and all social care services will have a named person who takes the lead for safeguarding and local authorities will have overall responsibility.
‘Using aids they give you doesn’t make you disabled, using aids enables you to retain some independence.’
What are Direct Payments?
If you are eligible for social care services, you are likely to be offered a Direct Payment (sometimes called a Personal Budget). A Direct Payment is money from the local authority Adult Social Care services to help pay for your support. You control the money you get, instead of the council. The money can help you meet your needs in different ways once it has been agreed by Adult Social Care services.
Your Direct Payment can help you employ a personal assistant (PA) or pay for a care worker from an agency to support you. Your personal assistant or carer can help you with lots of different things, like personal care and accessing the community. Your Direct Payment can also be used to pay for other support or services that meet your eligible assessed needs.
Your local authority will carry out an assessment to see if you are eligible for care and support. An assessment can be a lengthy process and quite daunting, but it is vital for assessing your needs and the level of support that will be made available to you.
Some or all of the assessment may be carried out over the phone, via online forms or face to face. If completing the assessment online or over the phone is too daunting due to your disability, you can request that someone (usually a social worker) comes out to see you.
We asked people with multiple sclerosis (MS) who use social care services, for tips around engaging with social services and the assessment process.
Below are ten of the best:
- Care assessments in my experience can be undertaken by practitioners who can change very quickly, getting back-up from the health service people who are involved with you is helpful, as is the presence of a friend or relative because it can all be a bit bewildering especially the money side of things
- Be sure to book your assessment during that time that your ‘energy levels’ are at their highest
- Gather as much information as possible together before the visit from social services. For example GP details, MS Nurse’s contact details etc.
- Have info about your daily life and routine to hand, make notes in advance. Have someone with you who knows you and how your condition affects you. Make a file up with details of your routines, likes, dislikes, contacts etc. and keep it handy and available
- Write or type down what you want to tell them so you don’t forget
- Tell them everything about your condition and needs
- You need to be blunt about how things are on a bad day and what happens when you have no help. Remember to include the needs met by partners/family
- Take a friend to help you explain things and help you to remember later. Don’t push yourself, if you get tired, tell them and ask for another appointment
- Ensure you are accompanied by a person of your choice or ask to be represented by an advocate
- Discuss your needs/expectations with your occupational therapist, Social Worker or care provider to ensure everyone is clear
The assessment is your opportunity to talk about your support needs. It is your time to say what you find difficult at the moment and what you would like to achieve with the right support.
Every individual, whether a person with a support need or a family carer, is entitled to an assessment of need if they requested it from their local Adult Social Care department (1).
The assessment will cover your physical, mental and emotional needs and the assessor from social services must consider the following areas:
- Your needs and how they impact on your care
- The things that matter to you, for instance, you may need help with personal care or help to get to your local MS Therapy Centre
- Your choices and goals, for example if you wish to take up a new activity, see people that matter to you or have preferences for the way you are cared for
- The types of services, information, advice and resources, which will prevent or delay further care and support needs from arising and therefore helping you stay well for longer
The Care Act 2014 bought in national rules for assessing who is eligible for care and support. It is local authorities who make the decision about whether or not your needs can be considered as having what the law calls ‘eligible needs’.
You can, of course have anyone of your choosing accompany you during the assessment, whether that is a partner, family member or friend. However, if you have substantial difficulty in communicating your wishes, understanding your rights or retaining information and there is no other appropriate person to support you, Social Services must provide you with an independent advocate to support you during (and after) the assessment process.
The local authority will also carry out a financial assessment to determine how much care they can fund and how much money you will have to contribute towards care services.
If you are not eligible for Adult Social Care funding, you can still access care and support services, but you will need to pay for them from your own resources. This is often referred to as ‘self-funding’.
Community equipment and minor adaptations needed as a result of your assessment may be free, but unlike NHS care, Adult Social Care support is a chargeable service. Your local Council have the right to request a contribution from you depending on your personal financial circumstances.
In simple terms, if you have £23,250 or over in savings, you will pay the full costs of your care package. Once your savings are below £23,250 you will pay a contribution towards your care until your savings are below £14,250, at which point Adult Social Care would pay for all your care costs (values are correct as at January 2018).
In addition to your savings the financial assessment looks at any income and assets that you have. It also includes any joint savings or finances in joint accounts, however only ‘half’ would be assessed (2). Your local authority is likely to openly publish their care and support charging policy and if requested will supply you with a copy.
The local authority will carry out an individualised financial assessment after their workers have completed a full needs assessment (if you have eligible needs).
You have a right to see and gain a copy of your assessment once it is completed. It is suggested that you read it carefully and make sure that it covers all aspects of your life and support needs. An assessment should be reviewed regularly (usually yearly) and you can go back to Adult Social Care at any time if things change in your life and your needs increase.
You, or one of your family members, may decide to make contact with the local authority to find out more about what support is available. If you already have a social worker, then you should speak to them first. If you are not known to Adult Social Care you will need to make contact with their team and go through an initial assessment.
What help you might get as a result of the assessment
The local authority has a duty to provide people with information and advice. Many local authority areas have developed new websites that contain a raft of information about care, support and living with long term conditions. The type of information that is available should cover how to access care services, how to obtain financial advice and how to raise issues if you have worries that someone is at risk of harm or neglect. Even if someone is not eligible for support from the local authority they should get personalised information and advice (in writing) after an assessment.
If you have eligible needs and are offered a direct payment or a package of care and support, the type of help you may get can be:
Employing a personal assistant
This is where you would write a personalised job description (written around your assessed needs) and employ a care worker directly yourself. You would be actively involved in the management of the worker and you would be their ‘boss’.
Using a care and support agency
You may choose to use a professional care provider based in your community to provide you with the care you need either in your own home or to help you access the community.
To use and pay for services at an MS therapy centre
Attending a MS therapy centre may help you maintain ability, may help to prevent or delay progression and can provide opportunities to mix with other people with MS which could have both peer support and social benefits. This could also provide a family carer with a short break from their caring role, which would be a valid way of using your Direct Payment.
To pay for transport costs
If transport is an issue for you (and you can evidence public transport is not accessible or too challenging) Social Services may agree for you to use some of your Direct Payment on transport costs. This could enable you to to engage in activities such as attending a day service or other community services.
Replacement care/respite services
If you have a family carer and you are reliant on them for substantial care and support, it may be that they need a regular short break or even a residential respite break. Your assessment will identify these needs and your Direct Payment could be used to pay for these kind of services.
We asked people with MS who use care and support services to share their experiences of using a direct payment and social care services. This is what people had to say…
‘My PA helps me by cooking, going shopping and doing housework. This has meant I have the energy to do voluntary work, study and spend time with my friends. My life is fulfilling not a struggle to survive.’
‘We were able to hire a nanny/housekeeper. It was the best decision, it allowed me to get well but still be a big part of our children’s lives. Luckily, the person we chose, we all got on really well with. It was like having a friendly aunt look after us.’
‘I ended up employing someone already known to me. They help me look after my son, getting him to and from school. My PA helps me keep on top of the house and shopping.’
‘I have a Direct Payment budget to enable me to get out and about for six hours a week. One day I visit a local café for food and a chat and the other day I use my carer to support me at a local MS group.’
‘Using aids they give you doesn’t make you disabled, using aids enables you to retain some independence.’
These are five of the top tips they shared with us...
‘If you employ your own PA you can set out your own hours of care and not rely on agencies.’
‘I suggest you employ well vetted staff.’
‘Don’t give up if at first you can’t find a suitable carer, keep contacting agencies or if you already use an agency, explain to them that the carer isn’t on your wavelength and ask if they have another carer they could introduce to you.’
‘Try and get regular carers - it helps the difficult delivery of personal care services.’
‘Be organised. I set up spreadsheets for the timesheets, expenses and make lists of jobs for the PA. You need to think ahead.’
Managing the Direct Payment
You have choices around how your care and support can be managed. You can request that the local authority arrange all care and support services on your behalf or you can take a Direct Payment and arrange and manage the budget and your support yourself. If you choose to take a Direct Payment you may need to open a dedicated bank account and keep clear and regular records of the finances.
You may be able to use a prepayment card (often local authorities will have this option) which can simplify matters further. It is also possible to use an external agency, such as a local ‘centre for independent living’ or ‘user led organisation’ to look after the money on your behalf.
‘I use payroll via a support planning service. They deal with all admin of my Personal Budget, leaving me free from worry about the business side of things. I can relax more about my care and worry less about having to always be alert. I can concentrate on living rather than existing.’
If you have eligible needs and you choose to take a Direct Payment you can decide how and where to spend the money to meet your care needs, but the local authority may ask to inspect these accounts on a regular basis to ensure that the money is being spent in the way that they agreed.
Planning your support
If you have chosen to take a Direct Payment or Personal Budget, the next step would be to make a support plan showing how you will spend your money to meet your needs. A social worker or worker on behalf of the local authority will usually give you a choice about how you can write your support plan. Your social worker may write the support plan with you, you can write a support plan yourself, or in some areas you can be referred to an independent service, who will work with you to write a support plan that suits your needs and wishes.
The plan would then need to be submitted to the local authority for agreement that this is the best use of funds and the best way to meet your needs.
Your support plan should include information about you and your disability. You should include information about who you are as a person, your goals for the future and how the support plan will help you achieve these goals.
The support plan should include the barriers you face as a result of your disability, the difficulties you face on a regular basis and how the Direct Payment will help you overcome these barriers. Making a plan in this way helps the local authority understand what is important to you and also how you will keep yourself safe from abuse or neglect.
The support plan should have information about your personal support network, including family carers, friends and unpaid people that support you in life.
Your plan should list how you would spend your money and how your needs would be met as a result of the support gained. You may choose to spend your Direct Payment on hiring a Personal Assistant, carers from a domiciliary care provider or other services that can help meet your needs. Your plan should budget for the year ahead including any contingency costs that need to be taken into account. Your plan should also show how you will manage the money.
We asked the MS community to share tips that help them manage and plan for their support. Here are some of the suggestions they shared...
‘I use an organisation to run my Personal Budget and the employment of my Personal Assistant. It enables me to keep control of my Personal Budget. They offer me a support planning service, payroll service, and employment contracts, employment law advice, and they also take care of my insurance requirements.’
‘I suggest using a payroll company. The paperwork is very daunting. Keep everything! You will be regularly audited.’
‘I used an Advocacy Service for advice regards employment law.’
‘Once the support plan is in place, monitor its delivery: are they coming on time, are the staff skilled/trained sufficiently to meet your needs and that you are paying exactly for the services delivered. Whoever’s money it is, it is your responsibility to ensure it is spent correctly.’
‘I get payroll support from a charity, meaning I don’t transfer money. I just complete time sheets. Also I ask expert advice about things like sick pay policy, bank holiday pay etc.’
Care and support planning resources
National Voices is a coalition of charities that are committed to people being in control of their own health and care. They have written a guide to care and support planning that you may find useful. The focus is on creating a person centred plan tailored to you and your own desired outcomes. The guide contains links to short videos and other useful pieces of information.
A further free resource is ‘Create my Support Plan’ which has been developed by the West of England Centre for Inclusive Living (WECIL), a user-led charitable organisation based in Bristol and funded by the Department of Health.
Purple is an organisation that works with disabled people in a variety of ways including services that support people that use Direct Payments. One of their services is providing help with support planning.
Example Personal Budget support plan
Please see MS-UK’s example of a Personal Budget support plan available to download in a Word document version from www.ms-uk.org/choiceslife.
This plan is based on a real person with MS and shows how their social care support is used. All identifying aspects have been removed and some minor aspects of the plan have been changed to protect anonymity. To draw up the support plan, we used Purple’s support planning template which is available on their website.
Here is a simple case study taken from the care and support statutory guidance issued by the UK government.
Miss S has multiple sclerosis and requires a frame or wheelchair for mobility. Miss S suffers badly with fatigue, but for the majority of the time she feels able to cope with daily life with a small amount of care and support. However, during relapses she has been unable to sit up, walk or transfer, has lost the use of an arm or lost her vision completely. This can last for a few weeks, and happens two or three times a year; requiring 24 hour support for all daily activities.
In the past, Miss S was hospitalised during relapses as she was unable to cope at home. However, for the past three years, she has received a care and support package that includes Direct Payments, which allows her to save up one month’s worth of 24 hour care for when she needs it, and this is detailed in the care and support plan.
Miss S can now instantly access the extra support she needs without reassessment and has reassurance that she will be able to put plans in place to cope with any fluctuating needs. She has not been hospitalised since (3).
This content is taken from the MS-UK Choices booklet. All quotes are from people affected by multiple sclerosis.
Visit the Choices booklet web page