Personal budgets are designed to be empowering, giving you more choice and control in how your care and support is delivered. This starts with the different ways in which you can choose how your personal budget is managed.
It must be noted that there are differences in the ways which social care, including personal budgets, are administered in the 4 UK nations. The most significant is in Scotland where personal budgets are known as self-directed support (SDS). The Scottish government funded organisation ‘Self Directed Support Scotland’ provides dedicated information and guidance all about SDS, which includes a free online handbook.
Despite these localised differences many of the core fundamentals remain. Therefore, the following information should be helpful to all UK residents.
If you are provided with a personal budget, the next step would be to make an individual support plan. A social worker or worker on behalf of the local authority will usually give you a choice regarding how your plan is created. For example, they may write the support plan with you, or you can create one yourself. 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 reflects your wishes.
Your plan should include information about you and your disability, the barriers you face as a result of your disability and the difficulties you encounter on a regular basis. It should also cover information about your personal support network, including family carers, friends and unpaid people that support you in life. A support plan should also detail who you are as a person, your goals for the future and how your plan will help you to achieve these goals.
Creating a support plan helps your local authority to understand what is important to you and how it will help you to overcome the problems that you currently encounter because of your care and support needs.
If you have chosen the direct payment route (more on this later) your plan should include how this method will help you to overcome these barriers, and how you will keep yourself safe from abuse or neglect.
You should also provide details of how you would spend your money if you have chosen the direct payment option, and how your needs would be met as a result. For example, you may choose to spend your direct payment monies on hiring a personal assistant (PA), carers from a domiciliary care provider or other services that can help meet your needs. Your plan should also summarise the budget for the year ahead, including any contingency costs that need to be considered. In short, it should reflect how you will be managing your direct payment in the financial sense.
Once you are happy with your support plan it will need to be submitted to your local authority for their agreement.
Direct Payment Support Services (DPSS) are available around the UK which can help you with managing your budget and planning your support. Their support can be wide ranging and may likely include finding suitable care providers, overseeing payments for care and support services and recruiting a Personal Assistant (PA). Your local authority can signpost you to DPSS providers available in your area. However, some example providers include Purple and Independent Lives.
There is a free online resource available to help you with creating a support plan. It is called ‘Create my Support Plan’ and has been developed by the West of England Centre for Inclusive Living (WECIL). They are an award-winning user-led charitable organisation who are dedicated to promoting independence and inclusivity within the disabled community.
The following is a simple case study which reflects how personal budgets and direct payments can be a force for positive change.
Miss S has multiple sclerosis and requires a frame or wheelchair for mobility. She experiences high levels of fatigue, but for the majority of the time she feels able to cope with daily life, albeit 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 approximately two or three times per year. During these periods Miss S requires 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 with a personal budget that includes direct payments. This gives her more control as it allows her to save up one month’s worth of 24-hour care for when she needs it, which is detailed in her care and support plan.
Miss S can now instantly access the extra support she needs without reassessment and has the reassurance that she will be able to put plans in place to cope with any fluctuating needs. The independence and control over her care that direct payments have given Miss S has led to her not being hospitalised since.
As mentioned previously, you can choose how your personal budget and delivery of care is managed. There are various options available to you, offering variable levels of control. Disability Rights UK provide more details of the different ways that your personal budget can be administered on their website, but below is a snapshot which you may find useful.
You can request that your local authority arranges all care and support services on your behalf. While your local authority will need to use your agreed support plan as a guide to providing your care and support needs, they will be responsible for the commission of these services.
Alternatively, you can access your personal budget monies via direct payments. This is where you will receive some or all of your personal budget amount directly. It is usually paid into a specific bank account that is set up solely to manage these payments. Direct payments offer you control over how your personal budget is spent as you arrange and manage the budget and purchase care and support services yourself. If you choose to take a direct payment you will need to keep clear and regular records of how your budget is spent.
Some authorities have introduced a prepayment card system for direct payments, which means your personal budget monies will be loaded onto a card, similar to a regular debit or credit card, rather than directly into a dedicated bank account.
It is also possible to use an external agency, such as a local independent living trust or a trustee led user-controlled trust to look after your direct payment on your behalf.
An ISF is a relatively recent addition to the options available for recipients of personal budgets. It is sometimes referred to as a middle ground option that sits in between the local authority and direct payments methods.
It involves your personal budget being paid to an ISF provider of your choice, usually these are organisations with a local presence, who will take on board some of the responsibilities that you would have had in managing a direct payment, such as overseeing associated financial responsibilities and the purchasing of services. An ISF provider will work with you to ensure that your support plan is delivered as and how you wish. The aim of ISFs is to give you the control and independence of direct payments, but with dedicated support.
The charity Helen Sanderson Associates have created a short video which summarises the purpose and potential benefits of ISFs.
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. However, the local authority may ask to inspect these accounts on a regular basis to ensure that the money is being spent in the way which was mutually agreed.
With a direct payment you control your personal budget, instead of the council. This money can help you meet your needs in different ways once it has been agreed by your local authority.
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. The payment can also be used to pay for other support or services that meet your eligible and agreed needs.
Below is a snapshot of the services and support you can purchase
This is where you would write a personalised job description, underpinned by 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 employer.
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.
Attending a neurotherapy 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.
If transport is an issue for you, your local authority may agree for you to use some of your direct payment budget on transport costs. This could boost your independence by enabling you to engage in activities such as attending a day centre, neurotherapy centre or other supportive community services.
If you have a family carer and are reliant on them for substantial care and support, it may be that they need a regular short break or a residential respite break. Your assessment will identify these needs, and your direct payment could be used to purchase these kinds 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…
‘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’
