Direct payments were introduced to provide more flexibility for those who have been assessed as being in need of services. Adults and young people with autism can apply for direct payments.
A direct payment scheme is a means to an end, and the end is independent living.
John Evans (2000)
There are two types of direct payments: those concerned with benefits being paid directly into a bank account, and direct payments given to individuals instead of receiving direct services from the local authority. This information is concerned with the latter and will provide a brief guide to direct payments including information on how to apply for them.
This information is relevant to people living in the whole of the UK but please note that the direct payments schemes may vary slightly depending on the country where you live. The information sheet will outline the relevant legislation for England, Scotland, Wales and Northern Ireland but this is intended as guidance only and is not a statement of law. It is always advisable to get further information from a local source to ensure you are fully aware of the relevant guidance and legislation and how this affects you.
The term 'LA' will be used where the information is relevant to all of the UK. LA will be used to mean the local authority social services (England), local council (Wales), local authority social work department (Scotland) and local authority health and social services trust (Northern Ireland).
This information is written for adults and young people who have an autism spectrum disorder (ASD). The term 'young people' refers to 16 and 17-year-olds.
What are direct payments?
Direct payments were introduced to provide more flexibility for those who have been assessed as being in need of services. A person receiving direct payments can arrange their own services instead of receiving the services directly from the LA. The idea is that direct payments provide a person with more freedom and control over the community care services that they receive and for some, this can lead to greater independence.
Who can receive direct payments?
People who may be eligible for direct payments include:
- disabled people aged 16 and over (this group includes older people, disabled adults and disabled young people aged 16 or 17)
- a person with parental responsibility for a disabled child (under the age of 18) or disabled person with parental responsibility for a child (this group may include a parent or others, such as a grandparent who has parental responsibility)
- carers aged 16 and over (direct payments could be given to unpaid carers in respect of their own needs but not for services in respect of the needs of the person they care for) (Clements, 2006)
What does this mean for people with an ASD?
Direct payments may be a suitable option for some individuals. Many adults who have an ASD feel that the services they are offered from the LA do not entirely meet their needs. In areas where there are limited services, direct payments may be an option to create more choice. However, the payments must be to pay for the services that the individual has been assessed as being in need of.
Here are some examples of how direct payments could be used:
- to pay a personal assistant to support you at the times of day when you feel you need the support
- to pay for a support worker to accompany and support you, when you are wanting go on holiday
- to pay a support worker to help you at college.
This scheme will not be right for every adult but it is worth considering. You need to be fully aware of the implications of receiving direct payments in terms of becoming an employer and the responsibility that this brings. This will be discussed further on and will explain the support that you can get with choosing this.
How to access direct payments
If you are offered the choice of receiving direct payments then you may feel pressured to make a decision quickly about whether you want the payments. If you are unsure if direct payments are right for you, then ask the social worker for longer time to make your decision. Ask the social worker any questions you have about direct payments or receiving direct services. You could also talk to a family member or an advocate if you have one, to talk through your options.
This process all seems quite straightforward but in reality it is not always this easy and you may come up against some obstacles. A common issue we hear about on the Autism Helpline is that the needs of adults who have an ASD are not always recognised and assessed thoroughly by the LA. It is important for you, if told you do not meet the LA eligibility criteria, to ask them for a copy of their criteria. Refer to the community care information sheet for details about complaints procedures if you are not happy with your assessment.
Direct payments for carers
If you have a person who cares for you on a regular basis (often this would be your parents) then they may also be in need of services. Social services have the power to provide services for carers following a carers assessment and social services can provide direct payments instead of providing them with a service. Please note as mentioned previously, direct payments could be given to carers in respect of their own needs but not for services in respect of the needs of the person they care for. For example, respite care is considered to be a service for the child or adult who has an ASD rather than the carer and so this would be assessed in your community care assessment rather than the assessment of the person who is caring for you. However, the provision of services to carers is discretionary: social services have the power to provide them but not an actual duty to do so. Nevertheless, this does not mean that local authorities can ignore carers needs and they cannot set blanket policies about who they are providing services for. LAs must make decisions by assessing each carers circumstance, individually.
Are direct payments available for all adults and young people with an ASD?
Direct payments should be an option for most adults who are in need of services. However there are considerations that the LA will take into account, following relevant regulations, to see if a person is entitled to direct payments. The main entitlements are set out below.
- Direct payments must relate to the users assessment of need (the relevant community care assessment or carers assessment).
- Users must be willing to receive direct payments (ie it has to be your choice and you shouldnt be forced into receiving direct payments).
- Users must be able to manage the payments (alone or with assistance).
- Some people may be excluded from receiving direct payments if subject to certain mental health or criminal justice legislation. (For more details on eligibility restrictions see the following website: www.carers.gov.uk/pdfs/dpguidance.pdf)
- There are restrictions on who can provide the services. Regulations do state that you cannot use direct payments to pay a close relative who lives in the same household unless the LA is satisfied that securing the service from such a person is necessary for promoting the welfare of the child in need.
- There are some services that cannot be paid for by using direct payments. For example, direct payments may not pay for adults to live in the long term in a care home (Department of Health, 2003).
- The amount paid for the direct payment must be equal to their estimate of the reasonable cost of the service to meet the assessed need. There must also be payments to help meet the cost of you becoming an employer (for example, start-up costs, national insurance and sick pay).
- When choosing direct payments, you will become the employer and therefore you need to be aware of the obligations that come with this. You will be obliged to ensure that the direct payment is used to pay for services to meet the assessed need. This will be monitored by the LA. The LA has the power to seek repayment if it is felt that the payments have not been used to meet assessed needs.
(Disability Alliance, 2005, and Clements, 2006)
The social worker can explain further about the above criteria and whether you are eligible to receive direct payments.
Financial contribution
People receiving services from the LA are sometimes required to contribute to the cost of care. As with receiving services you may be required to contribute towards the cost of the care purchased with direct payments. These charges will be means tested. The LA should only assess your income once they have decided which services to offer, so your ability to pay should not influence their decisions about the services you need. If you are living with your parents in their home, then the LA should only taken into account your income rather than your parents income when calculating any contributions.
If you feel the charges are unreasonable or that it is not possible for you to pay them, then you should find out first how the charges were calculated. Each LA has a policy on charging for services. You should then seek specialist advice from one of the organisations listed at the end of this factsheet. It may be advised to appeal against the amount of direct payment offered to you, following the LA appeals process (details should be available from the LA on how to appeal and who to appeal to).
Support with receiving direct payments
The LA should ensure that you have access to the advice, support, and training that you require to receive direct payments. LAs should have a Direct Payment Support Service to help those using direct payments with recruiting, payroll and other help needed with setting up and running a direct payment scheme. You will be given a start-up fund that will help cover the cost of administration and recruiting and you should receive a part payment to help with on-going administration costs. For some individuals who decide that they need support with being an employer, it may be possible for them to use some of this fund to pay the support service who can take on some of this role for you (such as payroll). This may ease some of the pressure of becoming an employer. To find information on the whereabouts of your local Direct Payment Support Service, please use the following link to the National Centre for Independent Living: www.ncil.org.uk/ssmainarea.asp
The amount of support provided by the local support schemes varies so it is best to contact them directly to discuss your individual situation.
For some young people and adults who have an ASD, it can be helpful to have advocacy support. Advocacy is a process of supporting and enabling people to express their views, to access information and services, to find out about options and make decisions, and to secure their rights. Please see the advocacy contacts towards the end of this information sheet to find a local advocacy organisation.
Setting up your direct payments and becoming an employer
As mentioned about there should be support available to you to help you set up the direct payments and help you with becoming an employer.
Banking and dealing with money
If you are receiving direct payments you will need to open a bank account solely for the direct payments to be paid in to. This will need to be a separate bank account to any other bank account you have. The reason for this is to do with your privacy. For auditing reasons, the LA will need to see records of how the direct payments are being spent and so it is important to keep a careful record and bank statements showing how the money is being spent. You will be able to get help with managing the money and keeping accurate records.
There may be different options with the amount of control you have over the finances. Some LAs offer different options of having control over the finances. You may choose to have complete control where the Direct Payments are paid into your bank account and you will be responsible for paying your employee, calculating deductions (e.g. tax and national insurance). This may seem very daunting for you so ask your LA of other options. The LA Direct Payment Support Service may be able to receive the direct payment on your behalf, and take full control of payroll and will pay your support worker directly. There may also be the option of having joint control of the money, so the payments are paid into your bank account but the LA Direct Payment Support Service take responsibility for arranging the payroll and calculating the tax deductions.
Employing agency staff
You may decide that rather than employing your own support workers that you prefer to use an agency. If you choose to do this then you should still have the choice of who will support you, but the care staff will be employed by the agency rather than by you. If you decide to use an agency you will need to ask the agency questions such as:
- what will happen if my usual support worker (employed by the agency) is sick and unable to work? Will you (the agency) provide another support worker in their place?
- if I decide that the arrangements I have with you (the agency) are no longer suitable, do I have to give you notice? (For example, the agency may say you have to give a weeks notice)
As the agency will be the employer, it is likely that they will determine the rates of pay for your support worker and this will be paid using your Direct Payments. The agency will also charge you a fee to use their agency staff.
Recruiting your own support worker/personal assistant (not using agency staff)
If you decide to recruit your own support workers and become their employer then the first step for you is to decide what is the support you need (this will relate to your assessed care needs), when the support is needed, and what you will expect from a support worker. This is a big task in itself and it may help you to discuss this with an advocate if you have one, a family member, your social worker, or with a person at the local Direct Payment Support Service.
Before employing a support worker or personal assistant, write down what essential criteria or skills that you feel are necessary for them to have. Then write a list of desirable skills they would prefer a support worker to have. For example, one adult who has an ASD decided the following skills were essential and desirable. This list was used in his job advertisement to recruit a personal assistant:
Essential skills/experience to be my personal assistant:
- has worked with adults who have an ASD
- has a clean, full driving licence
- person needs to be very patient and able to communicate very clearly.
Desirable skills/experience:
- has experience of providing one-to-one support to adults.
It will help to write a job description so that when you advertise for your support worker, applicants know exactly what is involved in becoming your support worker, the hours they are expected to work, and the rates of pay.
When you advertise you can use the description and include the following information in the advertisement:
- a short description of who you are
- what you are wanting the potential employee to do (eg help with daily living including help to go out socially, help with cooking)
- what the essential/desirable skills and experience that you require
- what the hours are (eg expected to work from 10am-12pm, Monday, Wednesday, and 4p-8pm on Thursday)
- what the pay is (eg £8 per hour)
- closing date for applications
- how to contact you (sometimes contact can be made via the local Direct Payment Support Service).
You will need to decide where you would like to advertise. Firstly think if you know anyone who may be want to become your support worker (e.g. a friend of the family, a befriender, someone who has supported you in the past). If you dont know of anyone who may want to work for you, then think about suitable places to advertise. You may wish to start with sending your advertisement and a covering letter to appropriate local organisations (e.g. support organisations). You can also try advertising at local universities but remember that many students will not be available all year round as may have exams to concentrate on, or may live away from home and so may go home during holiday times.
You may already know someone who you would like to become your support worker/personal assistant. Even if you already know them, you will need to remember that you will still be their employer if they are going to be your support worker.
The National Centre for Independent Living has useful information on their website about being an employer, including information on recruiting and health and safety checks: www.ncil.org.uk/employers_kit.asp
Shortlisting
You will have stated a closing date in which people will need to have contacted you/applied for the job by. After this date you will need to short list for people you would like to interview. This may depend on the number of applicants you have, eg if you have had only two applicants you may wish to interview both of them regardless of whether they have stated the skills/experience you are wanting your support worker to have (this doesnt mean to say you have to employ one of them if you feel they do not have the right experience). Or if you have had ten applicants for the job, and perhaps five of those clearly have the skills/experience you are wanting then you could short list these five candidates to interview.
It would be useful to contact all applicants and inform them individually, whether you would like to interview them or not. For those candidates who you would like to interview, you will need to arrange a suitable time and place for you and each candidate to meet to conduct the interview (talk to someone at your local support service to decide on where is the most appropriate place to meet to have the interview).
The interview
Prior to the interview/s you will need to write down a list of questions that you would like to ask each candidate. The National Centre of Independent Living has an interview checklist with examples of questions you may wish to ask:
www.ncil.org.uk/Interview_Check.asp
However you may wish to ask other questions as well, perhaps relating to their work experience.
If you have somebody supporting you in the interview (such as a family member, or an advocate) it would be polite to introduce them to the candidate, eg if your mother was present at the interview, you could say something like 'This is my mother, her name is ....... She will be helping me during the interview by writing notes about what we say'.
At the start of the interview you may start by thanking the candidate for coming to the interview. You could then explain about whom you are and why you want/need a personal assistant/support worker. After having asked the questions on your list and hearing the responses from the candidate (try to make a written note of these responses or if someone else is helping you at the interview perhaps they could write notes), you could ask the candidate if they have questions for you. They may have questions about training they may need if they were to get the job, questions about the conditions of employment, or have questions about what the job or being your support worker involves. It is good for candidates to ask questions as shows they are interested in the job, and they often are finding out if the job is really suitable for them (if you were to offer them the job).
At the end of the interview you can thank the candidate again for coming to the interview and tell them when you will let them know if they have been successful in getting the job or not.
Once you have completed the interviews you will need to decide who you feel is best suited to being your support worker/personal assistant. You may decide that none of the candidates are right for the job because they dont have the experience you were wanting or they are unable to work the hours you require. If this is the case you will need to decide if you are going to re-advertise the job. Or you may decide that a candidate doesnt have the exact skills/experience you had originally stated, but with training could still be suitable to be your support worker/employer.
If you decide to employ one of the candidates then you can contact and ask them if they would like to accept the job of being your support worker/personal assistant. If they accept, then you will need to write a contract or a written statement of employment particulars. This will include details of the terms of employments such as pay, required notice if they want to leave the job and working hours. There is information on what should be included in the contract on the Department of Health's website.
When you recruit a support worker/personal assistant it is advisable that they have a Criminal Record Bureau Check (known as a CRB check) and should be able to provide you with at least two references preferably from previous employers. Talk to someone at our local support scheme, or a social worker to find out more about your employee getting a CRB check. For people living in Scotland the criminal record check is known as Disclosure.
Will the direct payments be reviewed and what if they are not right for me?
Before receiving direct payments the LA should agree with you about monitoring the direct payments and how often they will review this. A review should take place within six weeks of an individual receiving a direct payment but if you feel you need an early review then do request one. The LA needs to satisfy itself that the individuals needs are being met by the services that they receive The LA should ensure that the direct payment is being used for the services that the individual has been assessed of needing (ie relating to the care plan). Whilst in the initial stages of having direct payments, you may find that reviews are more frequent to ensure that all is satisfactory.
If at any point you are not happy with direct payments or that you decide they are not right for you, then you should speak to your social worker or the person in charge of direct payments in your LA. Think about why you are not happy with the direct payments for example, are you having trouble recruiting the right employee to provide your care? If so, think about getting further support from your local support scheme to see if you can help with recruitment. It is your choice whether to continue with direct payments and if you decide to stop having the payments then the LA should provide the services instead.
There may be some circumstances where the LA decides to discontinue the payments. This may happen for example, if they feel your needs (as stated on care plan) are not being met by the services you are paying for with the direct payments. Your local authority should inform you if they are planning to stop the payments.
If your needs change and this affects the support needed, then the LA may reassess that your needs and this may affect the amount of direct payments provided. The LA should not withdraw the payments if they feel the persons needs have changed without having reassessed their needs. If you feel that your needs have changed then contact the LA as soon as possible and discuss how this affects the level of care and support that you require.
Conclusion
Direct payments may sound a suitable option for you and you may like the idea of having more control over the services you receive from the local authority. For other young people and adults the idea of becoming an employer and having this extra responsibility may seem rather daunting. Direct payments will not be right for everyone who has an ASD but if you do opt for this, then it is important that you have access to a good support scheme and that you are fully supported by your local authority in getting this support.
There is growing literature written about direct payments that provides help for becoming an employer and help with setting up a direct payment scheme. Having spoken to individuals directly it would seem that the way direct payments are set up varies across local authorities. It is important for young people and adults to have this choice between receiving services or payments and it is hoped that for many individuals, the payments will lead to getting services that fully support their needs.
Further contacts
Carers UK is a nationwide organisation and has a wealth of information on their website regarding support for carers, including the Carer's Assessment.
Carers UK
20-25 Glasshouse Yard
Tel: 020 7490 8818
Fax: 020 7490 8824
Email: info@carersuk.org
www.carersuk.org
CarersLine: tel 0808 808 7777 (Wednesday and Thursday 10am-12pm and 2pm-4pm)
Carers Scotland
91 Mitchell Street
Glasgow G1 3LN
Tel: 0141 221 9141
Email: info@carerscotland.org
www.carerscotland.org
Carers Wales
River House
Ynsbridge Court
Gwaelod-y-Garth
Cardiff CF15 9SS
Tel: 029 2081 1370
Email: info@carerswales.org.uk
www.carerswales.org
Carers Northern Ireland
58 Howard Street
Belfast BT1 6PJ
Tel: 028 9043 9843
Email: info@carersni.demon.co.uk
www.carersni.org
National Centre for Independent Living (NCIL) provides information on direct payments and details of local support schemes who offer support with managing direct payments. They also have information about becoming an employer.
NCIL
4th Floor, Hampton House
20 Albert Embankment
London SE1 7TJ
Tel: 020 7587 1663
Fax: 020 7582 2469
Text: 020 7587 1177
Email: info@ncil.org.uk
Legal advice
The Disability Law Service provide legal advice on community care law (England and Wales only)
Tel: 020 7791 9800
Fax: 020 7791 9802
Email: advice@dls.org.uk
Opening hours: Monday to Friday 10:30am 1pm and 2 4pm
Advocacy contacts
The following contacts have directories of local advocacy services.
Action For Advocacy (A4A)
PO Box 31856
Lorrimore Square
London SE17 3XR
Tel: 020 7820 7868
www.actionforadvocacy.org.uk
Advocacy Resource Exchange
162 Lee Valley
Technopark
Ashley Road
London N17 9LN
Tel: 08451 22 86 33
www.advocacyresource.net/
Scottish Independent Advocacy Alliance (SIAA)
138 Slateford Road
Edinburgh EH14 1LR
Tel: 0131 455 8183
Fax: 0131 455 8184
www.siaa.org.uk
References and further reading
Clements, L. (2006). Direct payments training notes. London: Carers UK Training Unit
Disability Alliance (2005). Disability Rights handbook. 30th Edition, April 2005-April 2006. London: Disability Alliance
Evans, J. (2000). Compromise and corruption: moving ahead on the road to citizenship. A presentation at the international conference on self- determination and individualised funding. Seattle. Taken from training notes Direct Payments Luke Clements, Carers UK 2006
Scope (2004). In the driving seat - direct payments for your child. Available to download from: www.scope.org.uk/issues/directpayments/index.shtml
The Department of Health publishes guides to direct payment on their website: www.dh.gov.uk
or contact:
Department of Health Publications
PO Box 777
London SE1 6XH
Tel: 08701 555 455
Fax: 01623 724 524
Other websites
Dial UK is a national organisation for a network of approximately 130 local Disability Information and Advice Line services (DIALs) run by and for disabled people. They have information on direct payments on their website:
www.dialuk.info/info_service/Information/independent_living.asp
Direct Payments Scotland has useful information on their website: www.dpscotland.org.uk/
The Scottish Government website has further information for those thinking of or already receiving direct payments: www.scotland.gov.uk/Publications/2002/04/14662/4093
DirectGov provides information on public services, including a guide on direct payments.
After 16 - what's new? is a website for teenagers and young people who have disabilities but is also useful for parents to refer to. The following web page outlines relevant legislation (across the UK) that affects young people and their rights: www.after16.org.uk/pages/law5.html
Quick link to this page:
www.autism.org.uk/20535