Controlling Your Own Personal Assistance Services

The British Council of Organisations of Disabled People

Part 3: How To Get The Money To Pay For Personal Assistance And Have Control Over How It Is Spent.

Jenny Morris

The two main sources of funding for personal assistance are social services departments, and the Independent Living (1993) Fund. A third possibility, if you are in paid employment (including self-employment), is the Access to Work scheme. This section of the booklet deals with the first two sources, with brief information being given about the Access to Work scheme at the end.

You can get control over the money that you need to employ personal assistants through using a combination of the community care system, the rights that disabled people have under the 1986 Disabled Persons Act and the 1970 Chronically Sick and Disabled Persons Act, and the initiatives developed by disabled people and their organisations.

Getting into the system

Ask your social services department for an assessment of your needs for personal assistance.

Your local Social Services Department will be listed in the telephone directory under your local Council.

Section 4 of the Disabled Persons Act (1986) says that, if you come under the legal definition of a 'disabled person' (laid down by the National Assistance Act 1948) you have the right to an assessment of your needs for all the things which are covered under Section 2 of the Chronically Sick and Disabled Persons Act 1970.

Section 2 of the 1970 Act covers:

• practical help in your home
• radio, television
• to use a library or similar facilities
• to go to lectures, games, outing or other recreational activities outside your home, or assistance in taking advantage of educational facilities
• help with transport to any of these activities
• adaptation to your home, or equipment for your 'greater safety, comfort or convenience'
• holidays
• meals in your home or elsewhere
• a telephone and any special equipment necessary to enable you to use it.

As you can see, what the 1970 Act covers is limited but (a) you have the right to be assessed for these things and, (b) if you are assessed as needing them then your social services department must arrange for them to be provided. (See Your Rights to Housing and Support details at the end of this section for more information.)

Under the new community care system, social services departments have been advised by government to assess people's needs for six main categories of things:

• personal/social care
• health care
• accommodation
• finance
• education/employment/leisure
• transport/access

(Department of Health Social Services Inspectorate (1991), Care Management and Assessment: Summary of Practice Guidance, HMSO, pp. 10-11)

So, when you ask for assessment of your needs, it should cover all these things. That is, it should take into account your whole life and what is required to live independently - but you will only have a right to the things which are covered under Section 2 of the 1970 Act.

Make sure that you get a 'needs-led' and not a 'service-led' assessment

The community care reforms involve new ways of doing assessments (including assessments for the things covered under Section 2 of the 1970 Act). According to government guidance, these are now supposed to be needs-led rather than service-led. The advantage of this is that needs-led assessments are based on a social model of disability. In other words, needs-led assessments are not a measure of what you can't do nor are they an assessment of whether you fit the criteria for existing services.

Instead, needs-led assessments establish what it is you want do in your life, what you have difficulty doing and what kind of help you need to enable you to do these things. So, for example, a needs led assessment will say: this person needs practical help with getting dressed in the morning. It will not say: this person needs a home care service; it will not involve ticking boxes to establish 'dependency' levels (i.e. what you can't physically do).

There are varying levels of understanding amongst social services workers about needs-led assessments. It will help if you are clear what a needs-led assessment is so that you put your needs forward in terms of what you want to do in your daily life and the help you need to do it.

Being your own 'care manager'

Once your needs have been assessed a care manager (who may be the same person who did the assessment) will decide, in consultation with you, how those needs are going to be met. Social services departments have now been divided into purchasers of services and providers of services. Care managers are purchasers; people who run home-care services and day-centres are providers. Care managers will either hold a budget, or will work with a senior care manager who holds a budget, and will decide how the money that has been allocated to meet your needs should be spent.

The situation that you want to establish is whether you are your own care manager. In other words, where you have control over how the money which has been allocated to you is spent. It is this control which will enable you to recruit your own personal assistants. The government supports the idea of disabled people being their own care manager. Their guidance to social services departments says: 'It may be possible for some service users to play a more active part in their own care management, for example assuming responsibility for the day to day management of their carers may help to meet the aspirations of severely physically disabled people to be as independent as possible.' (Department of Health, Community Care in the Next Decade and Beyond: Policy Guidance, HMSO, 1990, p.25)

There are a number of ways in which you can be given control over how social services money is spent which will enable you to recruit and manage your own helpers. However, before we look at these, we need to look at the Independent Living (1993) Fund.

The Independent Living (1993) FUND
(Please see http://www.ilf.org.uk/ for current information)

If you are eligible for a cash grant from the Independent Living (1993) Fund, the social services department will want you to apply for one as this will reduce the amount of money they have to contribute towards your personal assistance costs.

To be eligible for an Independent Living (1993) Fund grant you must:

• be at least 1 6 years of age and under 66 years of age
• be receiving the highest care part of the Disability Living Allowance
• be able to live in your own home for at least the next six months
• live alone or with people who cannot provide all the help you need
• have savings of less than £8,000 (however, if you have savings set aside for a piece of equipment, adaptation or vehicle which you need because of your impairment these savings may be ignored)
• receive income support, or receive income at the same level or less than income support, or if you have income which is more than you would get on income support be less than the amount you need to pay for help
• your social services department must have agreed to give you services which cost them £200 per week to provide for you

One important advantage of an ILF grant is that the money is paid direct to you and you can therefore use it to employ personal assistants. However, there are two other important points to bear in mind:

Cash grants from the ILF are means-tested. Although it is possible to be in paid work and still receive money from the ILF, they will assume that some of your income is available for paying for your personal assistance. The ILF have a particular way of calculating how much you would have to pay. Further details of this can be obtained from them (see address at the end of this section). In contrast, most direct/indirect payment schemes (see below) developed by social services departments are not means-tested, although they may be in the future.

If your personal assistance needs are more than £500 per week in total (i.e. the £200 from the local authority plus the £300 from the ILF), then you cannot get a cash grant from the ILF. In other words, your social services department will have to pay the whole cost of the help you need. There is pressure on the government to change these amounts so you will need to check whether these figures are up to date.

Most social services departments will have a policy of the maximum amount which they will spend on each person (they usually decide this according to which 'client group' you come under). Ask them how much this is. Ask them also what arrangements they have for people who have particularly high personal assistance needs, as they will usually have a procedure for allocating more than the maximum in particular cases.

How Social Services Money Can Be Used To Give You Control Over Personal Assistance

Over the past few years, disabled people and disability organisations have, together with some social services departments, developed ways of using social services budgets which enable people to employ their own personal assistants.

The main obstacle to doing this has been the government's opposition to 'direct payments' but many ways around this have been found.

Direct payments

The term 'direct payments' is used to refer to a cash grant which a statutory agency makes to an individual to enable them to purchase the help they need.

The government has said in the past that social services authorities are not allowed to make direct payments (because sections of the National Assistance Act 1948, the Health Services and Public Health Act 1968 and the National Health Service Act 1977 say that social services authorities should not make cash payments to individuals instead of providing services). However, the Government has now announced its intention of introducing new legislation to make it possible for direct payments to be made.

Already, a small number of social services authorities make direct payments to people to enable them to employ their own helpers. Shropshire County Council is one social services authority who are making direct payments but they have now restricted this to those to whom they already make payments. However, if you want to find out more about direct payments, Val Suffolk from Shropshire Social Services is willing to give more information (Tel. 01743 255843).

Indirect payments: (a) 'Third party' systems

This refers to the situation where a social services department pays a cash grant to a voluntary organisation on behalf of an individual's personal assistance needs and the voluntary organisation then passes it on to the person who employs their own helpers. This is becoming increasingly common.

One example is that of the Lothian Social Work Department who, having assessed someone's personal assistance needs, make a quarterly cash payment in advance for the cost of paying for that assistance to the Edinburgh Voluntary Organisation Council. They pass the payment on to the individual who then uses it to either employ their own personal assistants, or to employ agency staff.

Further information from Suselle Boffey, Development Worker for Independent Living Schemes, Tel: 0131 5569140.

Wiltshire Social Services Department are also operating this kind of third party system, through the Wiltshire Community Foundation. Payments are made to individuals into a separate bank account which is used to pay personal assistants or to pay agencies. Wiltshire are also funding the local disability organisation (Wiltshire User Involvement Network) to provide support to individuals who receive cash payments so that people can get help with recruitment, dealing with tax and national insurance, etc.

Further information from Dilys Fisher, Wiltshire Independent Living Fund Support Co-ordinator, Tel: 01380720577. This organisation also has a worker who helps Black and Asian people to set up independent living schemes (Mayur Bhatt, Development Worker for the Living Options Partnership Project).

Indirect Payments: (b) Trusts

A local authority can set up a non-charitable Trust for the benefit of an individual. This means that the local authority hands an agreed sum of money over each year to a Trust which is set up for the benefit of an individual or individuals. In the case of one individual, there are usually 3 or 4 Trustees, of whom the individual (the 'Principal Beneficiary') is one and the day-to-day management of the Trust is delegated to this person. The other Trustees can be friends, a solicitor, an accountant or anyone else who you think would be useful to you.

For taxation purposes, the money received from the local authority is treated as capital and therefore does not incur income tax. Capital gains tax will not be incurred because all the money will be spent on personal assistance. However, if interest is received on the money while it is held in building society or bank account this will incur income tax (normally deducted at source).

An increasing number of social services departments are interested in setting up Trusts as one way of financing personal assistance. Bill Walsh, who got his local authority to set up a Trust for him, has produced an information booklet about how to do it. It is also possible to purchase a copy of his Trust Deed (unfortunately, the London Borough of Tower Hamlets insist on charging £100 for it).

Further information from Bill Walsh, 13 John's Place, London, El. Tel: 0171 790 8973.

June Maelzer, whose local authority set up the first Trust that we know of (in 1 986) is willing to give advice to individual users and provide consultancy to social services departments on how to set up a Trust.

Further information from June Maelzer, 101 Burnage Lane, Burnage, Manchester, M192WN. Tel: 0161 2243534.

Time-sheet systems

An example of this kind of system is the London Borough of Camden's Independent Living Scheme. People can refer themselves to the Supported Living Team who will then discuss with them what their personal assistance needs are, taking account of the person's life as a whole (i.e. personal assistance needs related to employment and social activities as well as personal care). The majority of users of the scheme require 24-hour personal assistance but some need just a few hours per week. The scheme is flexible and tailored to the individual's need.

Once an agreement has been reached about how much help someone needs, then the person can recruit their own personal assistants. As the scheme has been going for 10 years there is a network of experienced PAs. If the user wants help with recruitment this can be provided by the scheme's co-ordinator.

The personal assistants are treated as self-employed. This has been a matter of long-running discussion with the Department of Social Security and the Inland Revenue. Recently the DSS have accepted that the PAs are self-employed but the matter remains unresolved with the Inland Revenue. Each week, a time-sheet is completed by the user and PA and submitted to the Council who process it and pay the PA within five days.

Further information from Christine Satwick, Co-ordinator, Supported Living Team, London Borough of Camden Social Services Department - Tel No: 0171 278 4444 ext: 6683.

The Merton Association for Independent Access (MAFIA - an organisation controlled by disabled people) operates a time-sheet system on behalf of their social services department. A social worker assesses someone's needs and agrees that they can employ personal assistants to provide so many hours help. MAFIA helps with the recruitment and any other support required. Time-sheets are presented to them every week which are then paid by MAFIA from money given to them by the Social Services Department. In this case, the personal assistants are employed by MAFIA and they deal with all the tax and national insurance, etc.

Further information from Merton Association for Independent Access, Vestry Hall, London Road, Mitcham, Surrey, CR4 3UD. Tel: 0181 640 6587.

The Independent Living Fund replacement money

This is another development which opens up more opportunities for the funding of personal assistance. Each social services department has received a special grant from the government to 'replace' the money which it is calculated disabled people living in their area would have received under the old Independent Living Fund. For many areas, by 1 995/6 this will be £4/500,000. Many social services departments are setting this money aside especially for people with physical and sensory impairments who have high personal assistance needs. Ask your social services department what they are doing with the money.

Independent Living Support Schemes

It is possible for a social services department to set up, or to fund a disability organisation to set up, an Independent Living support scheme, possibly using the Independent Living Fund replacement money.

Developing such Independent Living support schemes is very important. Although as individuals we want purchasing power - and this is why direct payments are the best way of giving people choice and control - we don't want to be isolated individuals all struggling to survive on our own, dealing on our own with the difficulties of managing independent living. We need to learn from each other, and have the security of knowing that the support we need is there. Social services departments can resource these support needs, using the expertise within the disability movement and the support and training services which the disability movement has itself created. It's just as important that we encourage social services departments to develop this kind of service as it is that we encourage them to develop direct and indirect payment systems.

The Access to Work Scheme

If you are in paid employment (including self-employment) you can get personal assistance costs associated with work funded through the Access to Work scheme. This scheme was introduced in June 1994 and is run by the Department of Employment. Access to Work can pay for:

• a communicator for people who are deaf or have a hearing impairment
• a part-time reader or assistance at work for someone who has a visual impairment
• a support worker if someone needs practical help either at work or getting to work.

The scheme can also pay for equipment, adaptations to a car, taxi fares or other transport costs, and alterations to the work environment. The Placing, Assessment and Counselling Teams (PACTs) run the scheme and you can find your local PACT in the telephone directory under 'Employment Service' (or ring your local Job centre).

References:

Your Rights to Housing and Support, available from SIA, 76 St James's Lane, London, N1O 3DF (£6.00 inc. p+p). Tel: 0181 444 2121

Independent Living (1993) Fund, PO Box 183, Nottingham NG8 3RD. Tel: 01159 428191/428192.

How to set up Trusts and User Controlled Independent Living Schemes, available from Disability Advocacy Network, Disability Resource Centre, 40-50 Southern Grove, London, E3 4PX. Tel: 0181 980 2200. (£3 + P&P for disabled people).

Appendix 1

Useful Organisations

Avon Centre for Independent Living has recently changed its name to The West of England CIL, Courtlands, Leinster Ave, Knowle, Bristol, B54 1AR. Telephone: 0117 983 9839.

British Council of Organisations of Disabled People, Litchurch Plaza, Litchurch Lane, Derby, DE24 8AA. Telephone: 01332 295551.

Derbyshire Centre for Integrated Living, (DCIL) Long Close, Cemetery Lane, Ripley, Derbyshire, DE5 3HY. Telephone: 01773 740246.

Disability Alliance, Universal House, 88-94 Wentworth Street, London, El 7SA. Telephone: 0171 247 8776.

Disability Direct. Rosehill Business Centre, Normanton Road, Derby, DE23 6RH. Telephone 01332 299449.

Disablement Income Group, (DIG) Unit 5, Archway Business Centre, 19-23 Wedmore Street, London, N19 4RZ. Telephone: 0171 263 3981.

Disabled Living Foundation, 380-384 Harrow Road, London, W9 2HU. Telephone: 0171 289 6111.

Disability Resource Team, (DRT) 3rd Floor, Bedford House, 125-133 Camden High Street, London, NW1 7JR. Telephone: 0171 482 4896.

Greater London Association of Disabled People, (GLAD) 336 Brixton Road, London, SW9 7AA. Telephone: 0171 274 0107.

Greater Manchester Coalition of Disabled People, (GMCDP). Carisbrook, Wenlock Way, Gorton, Manchester, M12 5HF. Telephone: 0161 273 5154/5.

Greenwich Association of Disabled People, (GAD), Greenwich Centre for Independent Living, Christchurch Forum, Trafalgar Road, Greenwich, London, SE10 9EQ. Telephone: 0181 305 221.

Hampshire Centre for Independent Living, (HCIL) 4 Plantation Way, Whitehall, Bordon, Hampshire, GU35 9HD. Telephone: 01420 474261.

Independent Living Alternatives, Fulton House, Fulton Road, Wembley Park, Middlesex, HA9 0TF. Telephone: 0181 902 8998 ext: 228.

lslington Disablement Association, (IDA) 90-92 Upper Street, London, N1 0NP. Telephone: 0171 226 0137.

Lambeth Centre for Integrated Living, (LCIL) Barstow Crescent, Palace Road, London, SW2 3NS. Telephone: 0181 671 8892.

Lothian Centre For Integrated Living, (LCIL). Lochend Road, Edinburgh, Lothian, EH6 8BR. Telephone: 0131 553 6999.

Muscle Power. Rosehill Business Centre, Normanton Road, Derby, DE23 6RH. Telephone 01332 299449.

REGARD, BM REGARD, London, WC1N 3XX.

Shropshire Disability Consortium, The Shropshire Disability Resource Centre, Lancaster Road, Harlescott, Shrewsbury, Shropshire, SY1 3NJ.
Telephone: 0l743 344599 ext: 236.

Southampton Centre For Independent Living, (SCIL) 6 Northlands Road, Southampton, SO1 2LF. Telephone: 01703 330982.

Spinal Injuries Association, (SIA) 76 St James' Lane, Muswell Hill, London, N10 3DF. Telephone: 0181 444 2121.

Appendix 2

Resources

Essential Publications for Personal Assistance Users

'Guide-lines for Self Operated Care Scheme Users', Greenwich Centre for Independent Living, Christchurch Forum, Trafalgar Road, Greenwich, London, SEl0 9EQ. Telephone: 0181 305 2221.

'Sourcebook Towards Independent Living'. HCIL Books, c/o Mark Walsh, 31 Churchfield Headley, Bordon, Hampshire GU35 8TF.

'The Personal Assistance Users Newsletter', BCODP, Litchurch Plaza, Litchurch Lane, Derby, DE24 8AA. Telephone: 01332 295551

The Department of Employment publish booklets on 'Employment Legislation'. These can be obtained free from your Employment Services offices. These range from PL699 to PL870. Of particular use is PL700 entitled 'Written Statement of Main Terms and Conditions of Employment'.

The ACAS advisory handbook 'Discipline at Work' can be obtained from ACAS Reader, PO Box 797, London. SE8 4JX. Telephone Enquiries: 0171 396 5100.

'Your Rights to Housing and Support'. Spinal Injuries Association. 76 St James' Lane, London, N10 3DF. Tel: 0181 444 2121.

'User Control and Employing Personal Assistants for Independent Living'. Disability Advocacy Network. 40-50 Southern Grove, London, E3 4PX. Tel: 0181 980 2200.

Statutory Authorities

Health Authorities should provide information on health related services like chiropody, physiotherapy, health visitors, district nurses and so on. Your GP should be able to provide information on these services. Local Community Health Councils can also be a good source of information.

Department of Social Security/Benefits Agency - they are sometimes useful for information on benefits and social security entitlements.

Department of Health - they can provide information on impairment related technical aids such as wheelchairs, splints and callipers.

Council Housing Departments - contact for housing problems and information about grants such as the Disabled Facilities Grant for adapting inaccessible homes. They provide these grants to help with adaptations. However, Social Services Departments also have a legal duty to ensure that disabled people get the adaptations they need. So, contact both Housing and Social Services regarding adaptations.

Local Authority - contact Local Authority Social Services Departments for Home Helps, Occupational Therapists, Technical Aids, 'Respite Care' service, etc.

The address and telephone number of each of the above will be in your local telephone directory and can also be obtained from British Telecom's Directory Enquiries.

Funding

Housing, Disabled Facilities Grant - contact local authority housing department (see above).

Part 3 of this booklet explained how to get funding for personal assistance, including how to make contact with other disabled people who have got funding for personal assistance. Your local Social Services Dept is probably the best place to start to get this information and they are listed in your telephone directory under your local Council.

Personal Assistance

Active Assistance, 2nd Floor Office, Stricklandgate, Kendal, Cumbria, LA9 4RA. Telephone: 01539 730674.

Community Service Volunteers, (CSV Independent Living Scheme) 237 Pentonville Road, London, N1 9NJ. Telephone: 0171 2786601.

Spinal Injuries Association, (SIA) (see above).

United Kingdom Homecare Association, (UKHCA) The UKHCA Secretariat, Premier House, Rayburn Terrace, Watson Mill Lane, Sowerby Bridge, West Yorkshire, HX6 3BW.

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