Self-directed Support: A Guide for Carers

Option 1: direct payments

This is the option where the person getting support has the most control and choice over the kind of support they get. Direct payments are cash payments from the Council for people who have been assessed as needing help and support from Social Work Services, but who want to choose how and when they get this kind of support. They can be given to people with a disability or support needs who would like to arrange and pay for their own support services, as well as to carers who have been assessed as needing support and would like to arrange and pay for this themselves.

Once a support plan has been worked out and an individual budget decided upon, the Council will pay the amount of money into your bank account. You can then use this money to buy the services you have decided to use. You have to keep track of how the money is spent by saving receipts and invoices.

In most cases, the person receiving a direct payment has to be able to consent to getting it and must be capable of managing it - this is known as having capacity. However, if you are looking after someone who is not able to manage a direct payment themselves, they may still be able to have a direct payment as long as they get help from someone else to manage the payment. In cases like this, as a carer, you may be asked to take on the management of a direct payment for the person you look after.

Siobhan's Story

Siobhan looks after her mum, who is 82 and suffers from osteoarthritis and has recently been diagnosed with Alzheimer's disease. Her mum was getting a daily visit from a care worker for a small amount of personal care and household work, but over time her support needs increased and after reassessment the number of visits was increased to an hourly visit three times a day. The number of different care workers attending increased, up to around 40 different staff members over a one month period. This made it difficult to establish any kind of rapport or continuity between Siobhan, her mum and the care workers.

Some staff were not very good at properly meeting Siobhan's mum's needs and wishes, and Siobhan's mum developed anxiety and fear of the care workers visiting and finally began to refuse care. Siobhan had to be present when the care workers attended in order to reassure her mum, which was not the best use of anyone's time as the care workers were supposed to give Siobhan a break from caring.

The Council were reluctant for non-local authority care to be arranged, and said that if her mum continued to refuse care she would have to go into residential care.

After receiving some support and advice from her local carers' centre, Siobhan's mum now receives a direct payment which is managed by Siobhan's brother Eamonn. The direct payment is used to employ Siobhan to provide care for their mother. Both Siobhan and Eamonn have welfare power of attorney for their mother, and Eamonn has continuing power of attorney, which means he looks after the money. Siobhan can be employed to look after her mother because she has no responsibility for her mum's money. The direct payment works very well, both Siobhan and her mum are happy and her mum's health has improved since Siobhan has been providing care.

Being an employer

A lot of people use their direct payment to employ a care worker or personal assistant (PA). This is a very flexible way of getting support, and can be particularly suitable for people with unpaid carers, as they can make sure that the support given by the PA is complementary to the support that is given by them. For example, the PA might come to spend time with the person when the carer is at work during the day, or they might come every evening to make the dinner so that the carer can spend some time doing something else.

If you would prefer not to have the responsibility of being an employer, you can use a direct payment to buy support from an agency. You will still be able to have a personal assistant or a dedicated care worker, but the paperwork will be reduced as the PA will be employed by the agency and they will take care of all the official matters.

The amount of money that the Council give to buy support will be the same amount each week, but if more or less support is needed on different days (for example, if a family member is coming to stay for the weekend, and they'll be able to do some of the PA's work, like cooking), then the PA could work fewer hours on that day and make them up at another time.

If you use an agency, they will let you know if you can 'bank' hours in this way. If you directly employ a PA, you can discuss with them how this will work in practice.

As well as paying your PA a regular wage and keeping a note of the hours they work, you will need to make sure that you do all the things an employer needs to do, such as pay the correct amount of tax and National Insurance. Organisations such as SPAEN can help people with the responsibilities of being an employer such as employment contracts, holiday and sick pay, and payroll services.

When choosing this kind of support, or helping the person you look after to choose their support, it is important to think about the tasks you expect the staff to do and the way in which you would like them done. You will also need to think about what will happen if you want to stop having a PA in the future, or what will happen if your PA is ill, goes on holiday or wants to leave.

Carers and option 1

Carers can either receive direct payments for their own support as a carer, or they can manage the direct payment on behalf of the person they care for. They might also do both. Most people who receive direct payments will be able to manage them if they have sufficient understanding and memory, but if they lack capacity then the carer, or someone else acting on the person's behalf, may have to manage the direct payment for them. In this situation, if you are also receiving a direct payment for your own support as a carer, the money will have to be kept in a separate bank account.

Power of Attorney (PoA) is a written document that says someone can make decisions on behalf of someone else. Carers often have PoA for the people they're looking after when the person is no longer able to make decisions or communicate by themselves.

Continuing power of attorney is a power over someone's property or money, if they are not able to handle things by themselves or make decisions.

Welfare power of attorney is a power over someone's personal health and care needs, if they are not able to decide this for themselves.

A guardianship order is a court appointment which authorises a person to take action or make decisions on behalf of an adult with incapacity.

Carers who receive direct payments in order to buy support for themselves are expected to account for the money in exactly the same way as anyone else who receives direct payments. The money will be paid into a specific bank account and you will have to keep records of how the money is spent. The Council will regularly check that the money has been spent on meeting your outcomes.

In order to manage a direct payment on behalf of someone who is over 16, you will need to have guardianship or power of attorney. For more information about this, you should speak to your local carers' centre or look at the back of this guide for information from the Office of the Public Guardian.

Young carers and young people

Children under 16 cannot receive direct payments in their own right, but they can be paid to their parents or guardians who will manage them on their behalf. If the young person is caring for their parent or guardian, the parent or guardian can still manage the direct payment for the young person as long as they are capable of doing so.

Young people aged 16 and over are able to have direct payments for themselves as young carers and also manage direct payments for the person they are caring for.

When are direct payments not allowed?

Sometimes you or the person you look after will not be able to have a direct payment. You will not be able to have a direct payment if having one would put your safety at risk. The Council will tell you if you or the person you look after will not be able to get a direct payment, and they will always explain why they think you would not be safe and make sure you understand.

Sharing a budget

A group of people who receive direct payments can 'pool' this money to buy support for shared activities. This can be useful if the cost of the service cannot be paid for with just one budget, and can also help build relationships and friendships among groups. It also works well for activities such as art, music and other activities that build skills, as these are activities that can be better in a group.

Direct payments for equipment and adaptations

If you or the person you look after needs equipment or minor adaptations in order to meet your outcomes, you could use a direct payment to buy the equipment you need, rather than get it provided for you. This means you can buy equipment from a different company than the one used by the Council, or you can use the money to buy a more expensive piece of equipment and make up the difference yourself. If the equipment needs maintenance, you should also receive direct payments to cover the cost of the maintenance.

Gillian's Story

Gillian, who lives in a small rural town, cares for her two sons who have a learning disability. When she first heard about SDS she wasn't keen, thinking it sounded like social care services were passing the workload to carers for the organising and managing of a person's support. However, as time went on and she learned more about SDS, she started to think it may be a possibility for her family. With the support of the local carers' centre she started the process for her older son. She received good support from her son's Care Co-ordinator who was enthusiastic and keen to work on the support plan with both of them. After the Council gave the go ahead to the support plan, she was delighted but also apprehensive.

With support and guidance from the carers' centre, she set up meetings with various care agencies and support providers to see what they could offer, and eventually decided on a local service provider as the best one for her son. As she is in control of the budget it means they have freedom to plan and arrange things for her son at a time to suit him. Some of the activities he has taken part in wouldn't have been possible without having the right SDS option. Other family members and staff at the carers' centre have noticed that both Gillian's and her son's confidence has increased.

Gillian pools some of the money with other parent carers to provide services to all of their children. This means they can use their money to purchase more and different types of support that they wouldn't be able to do by themselves, such as group activities for all the children.

She is now considering different options for her younger son's support as her older son's support is going so well for the family.