Controlling Your Own Personal Assistance Services

The British Council of Organisations of Disabled People

The Joseph Rowntree Foundation has supported this project as part of its programme of research and innovative development projects, which it hopes will be of value to policy makers and practitioners. The facts presented and views expressed in this report, however, are those of the authors and not necessarily those of the Foundation.

BCODP wishes to thank Carl Ford (Shropshire Disability Consortium), Richard Shaw (Disability Direct and Muscle Power) and Jenny Morris (Independent Disability Consultant) who contributed the reports which made this publication possible.

First published in 1995 by
The British Council of Organisations of Disabled People.
© BCODP
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without the prior permission of the publishers and copyright owners except for the quotation of brief passages by reviewers for the public press.

ISBN 0952150522
Composed by BCODP
Printed by Bailey & Sons Ltd, Somercotes, Derbyshire

Contents

Part 1: Managing a Personal Assistant

Introduction
Assessing your personal assistance needs
Funding
Job description
Advertising for Personal Assistants
How to decide who to employ
Application forms
Interviewing
Contracts
Pay-roll schemes
Insurance
Rota and work sheets

Part 2: The User/Personal Assistant Relationship

Example 1: Personal Assistant check list
Example 2: A job description for a Personal Assistant
Personal requirements
Other duties
Personal Assistant's responsibilities
Learning the tasks involved
Points to bear in mind
Qualifications and personal qualities required
Example 3: Information for prospective Personal Assistants
Specific tasks
Living arrangements
About the area
Qualifications and employment arrangements
Example 4: An application form
Example 5: Interview check list
Example 6: Personal assistance rota and work sheet

Part 3: How to get money to pay for personal assistance and have control over how it is spent

Getting into the system
The Independent Living (1993) Fund
How Social Services money can be used to give you control over personal assistance
Direct payments
Indirect payments:
(a) Third party systems
(b) Trusts
Time sheet systems
The Independent Living Fund replacement money
Independent living support schemes
The Access to Work scheme

Appendix 1: Useful Organisations

Appendix 2: Resources

Part 1. Managing a Personal Assistant

Carl Ford and Richard Shaw

Introduction

At present, personal assistance services for disabled people are fragmented and vary considerably from area to area. As we all know this causes many problems for disabled people and their families. Self-operated personal assistance schemes overcome many of these problems.

Self-operated personal assistance schemes give disabled people and their families more independence, more control, and more freedom than any other form of provision currently available.

Running our own personal assistance services is not without its headaches. Employing and managing personal assistants (PAs) may give us more control but it also carries with it certain responsibilities which need to be considered.

We believe the extra effort is a small price to pay for the benefits it brings. What follows then are some guide-lines on how to get started or setting up and managing your own personal assistance schemes. We hope you find them useful.

Assessing Your Personal Assistance Needs

Before employing a PA it is important to know what your personal assistance needs are. Once you have worked this out you assess how much it is likely to cost. There are a number of ways this can be achieved. One way is to write down what you think your needs are on a personal assistance check list (see Example 1, page 8).

Funding

Once you have decided how much help you need you have to work out how long it will take in hours per day, days per week, and then how much it is likely to cost. When you have done this you have to think about how to pay for it.

Most disabled people cannot afford to pay for PA services themselves so they have to look for funding elsewhere. Money for personal assistance schemes may be available from a variety of sources such as the new Independent Living Fund, Local Authorities (Councils), charities, and in some cases compensation moneys paid for personal injury.

Part 3 of this booklet tells you how to access money through the community care system.

Organisations like the Derbyshire Centre for Integrated Living (DCIL), Hampshire Centre for Independent Living (HCIL), the Spinal Injuries Association (SIA) or Greenwich Association of Disabled People (GAD), with expertise in this field can provide help and advice with funding packages and applications - their addresses are shown in appendix 1. Contact your local disability organisation or Social Services Department to find out if there is an Independent Living Support Scheme in your area.

Job Description

A job description is one way of ensuring that your PA knows exactly what their duties are. When you are looking for staff it will help them to know exactly what you are looking for and whether they wish to apply. You can write a job description using your personal assistant check list (see Example 2, page 9).

You may decide to incorporate your job description into a letter which tells the prospective personal assistant something about yourself as well as your personal needs (see Example 3, page 12).

Advertising for Personal Assistants

Once you have decided what your personal assistance needs are you need to advertise for staff. There are a number of places where you can place your advertisement.

The local Job Centre will place advertisements on their display racks free of charge. Sometimes they provide special cards for you to fill in or you might have to provide your own. Local colleges offices also provide a good opportunity for free advertising for staff - particularly if you are looking for younger people to act as PAs.

Details of how to place advertisements can usually be provided via the telephone, by post or in person.

Advertisements in local newspapers or journals can be effective but may be quite expensive. You can also place advertisements for PAs in local supermarkets and shops. They are relatively cheap and provide a good way of recruiting local people if that is what you are looking for. A Recruiting Agency is another way of advertising - but they are usually quite expensive.

An advertisement for a PA should be brief and include information on:

• the type of work
• hours per week
• pay
• how to get in touch with you

People should not display their address only their telephone or PO Box number. However, an advertisement could indicate the area you live in. Some individuals arrange with a friend or their local disability organisation to receive the applications on their behalf. Some of these organisations have 'Pay and Display' boards.

How to Decide Who to Employ

Once you have advertised and people have begun to reply, you need to know more about them before you decide who to employ. You can do this by sending them an application form.

Application Forms

Application forms are especially useful because they give you the opportunity to tell the applicant more about the job and, at the same time, help you to 'weed out' unsuitable people.

You can use the information in your Job Description to help you write the form (see Example 4, page 15).

Interviewing

When you have received the application forms back you can decide who to interview. Interviews can be a daunting experience both for you and for job-seekers. You might consider having a friend or relative present at the interview to provide moral support. They can also help with questions and can provide a second opinion if you are unsure about who to employ.

However, the key to good interviewing is to prepare well before the interview takes place. It is helpful to write down important questions and take notes of the applicant's answers on an Interview Check List (see Example 5. page 17). This gives you an opportunity to compare different applicants' responses once interviewing is over.

The important thing is to get as much information as possible at the interview in order to help you make your decision.

Contracts

Once you have decided to employ someone you may need to provide them with a Contract of Employment. Legally anyone who works for you for more than 16 hours per week or who has worked 8 or more hours per week for you for five years or more should have a Contract of Employment or Statement of Terms and Conditions. Help with writing contracts can be provided by the organisations like those mentioned earlier, namely, Derbyshire Centre for Integrated Living (DCIL), Hampshire Centre for Independent Living (HCIL), the Spinal Injuries Association (SIA) or Greenwich Association of Disabled People (GAD). Your local Citizens Advice Bureau (CAB) might also be able to help. Contact your local disability organisation or Social Services Department to find out if there is an Independent Living Support Scheme in your area.

Pay-roll Schemes

Accountability for direct finance is one of the most frequent reasons used to deny many disabled people full choice and control over their lives - particularly in relation to personal assistance. Not only do Pay-roll schemes provide essential methods for recording and managing personal assistance finance but they also effectively counter and nullify any argument of inadequate financial accountability. Pay roll schemes also ensure that your PA's tax and National Insurance Contributions are deducted correctly. Hence they safeguard you and your PA against any demands from the Inland Revenue for tax arrears or from the Contributions Agency for unpaid National Insurance Contributions.

In terms of current schemes the 'Simplified Deduction Scheme'(SDS) and the 'Pay As You Earn (PAYE) Scheme' are the most common. The main difference between the two is simplicity and convenience depending on the method of operation. The SDS was initially introduced for domestic employees, particularly nannies, and is especially suited to PA schemes as it is simple to operate.

Both the SDS and PAYE schemes can either be operated on a weekly, 4-weekly or a monthly system, depending upon payment arrangements. With the SDS there is marginally less responsibility on the employer for administration as this is simplified by the Inland Revenue particularly in relation to the individual employee's tax. Running a calendar monthly scheme rather than a weekly system greatly reduces the amount of administration involved.

Useful publications for pay-roll schemes use:

For the 'Simplified Deduction Scheme' ask for 'P4Q Starter Pack' from your local Inland Revenue office. This should include a P12 Simplified Deduction Card, a P1 6 'How to Fill in the Simplified Deduction Card' and a Pl6a 'Taking on a New Employee'.

For the 'Pay As You Earn Scheme' (PAYE) you need a P4 'Starter Pack' from the Inland Revenue Office. Also ask for a copy of the 'Employer's Guide to PAYE'.

You can find the address of your local Inland Revenue office through British Telecom's Directory Enquiries. If the offices are inaccessible - as they often are -you can get the leaflets by asking for them to be sent to you by post.

Insurance

The first question that needs to be asked is "why do I need insurance when employing personal assistants"? The simple answer to this is that as an employer you have a legal duty to insure against accidents or injury to your staff, or accidents or injury caused by them while they are in your employ.

Accidents can happen in a number of ways. For example, your PA might fall down the stairs while doing the housework. Alternatively, they might have an accident outside your house while doing your shopping. If they are involved in a car crash they might also injure someone else. Additionally, your PA might contract an illness which they might feel is your responsibility - food poisoning, for example, contracted from eating your food. In such cases, as their employer, you might be held responsible. Consequently, when employing a PA you must take out:

• 'Employers Liability Insurance'. This will insure you against your PA having an accident or becoming ill while working for you, in cases where you might be held liable.
  
  
• 'Public Liability Insurance'. This is needed to insure you against any damage or injury caused to someone else by you or your PA while they are working for you.

You also need good comprehensive house insurance to cover your property and its contents. Sometimes PAs can damage your property.

Sometimes 'Employers Liability Insurance' and 'Public Liability Insurance' can be included in a comprehensive household policy. However, insurance can be quite expensive. Your funding agency - the Local Authority, Independent Living Fund, etc. - might help you cover the cost. You should also shop around to get the best terms.

It is also helpful to seek advice from organisations of people with experience of personal assistance such as the Derbyshire Centre for Integrated Living (DCIL), Hampshire Centre for Independent Living (HCIL), the Spinal Injuries Association (SIA) or the Greenwich Association of Disabled People (GAD) to ensure you are covered in all areas.

Rota Sheets and Work Sheets

Rota Sheets and work sheets provide users with an opportunity to plan personal assistants' duties and monitor wages (see Example 6, page 19). The examples provided are but one approach and simply a guide - many people devise their own system. The key is to maintain some form of record.

Part 2. The User/Personal Assistant Relationship

Carl Ford and Richard Shaw

It is important to remember that the user/personal assistant relationship is a very complex one. In most cases, it is a one-to-one relationship and on occasion can become very intense and personal. So we need to consider the vulnerability of both parties. In order to guard against any upsets which might occur we need to establish 'professional' boundaries. If both parties know exactly what their responsibilities are then there is less likely to be a problems.

It is important that both the disabled person and the PA are able to communicate openly with each other. Problems and misunderstandings are more likely to occur if people do not talk to each other and know where they stand. If, for example, your PA has smelly feet and it is causing you a problem, how do you address it? Smoking can also be an issue; your PA may smoke and you don't. To avoid these kinds of problems you need to establish a set of 'house rules' so both parties know where they stand.

Alternatively, you may have certain habits or eccentricities which your PA might find offensive. In the event they need to be able to tell you in a way which does not jeopardise the working relationship.

Clear guidelines will help to eliminate such problems. You can write them down yourself at the start of the relationship or you can identify them as you go along. Either way it is important that both parties know exactly what the guidelines are and why they are there.

Privacy is another important consideration. On several levels your PA is going to be privy - more or less - to everything you do. Often the more you limit the assistance you have, the less choice you have in what you are able to do.

Alternatively, the more assistance you have the less privacy you have. Some people prefer to have the minimum of assistance because they are not prepared to lose their privacy while others involve their PAs in all their activities - financial affairs, social life, etc. Here confidentiality is a key issue. If you choose the latter then you may make yourself more vulnerable. As a PA user you have to decide what is a comfortable balance.

There is bound to be personality clashes in the user/PA relationship. It can be particularly difficult when you have been employing someone for a long time and because of the nature of the relationship you have become quite friendly. When these clashes arise it is important that you have a set procedure with which to resolve them amicably without destroying that relationship.

Another problem for many PA users, particularly if they are new to employing their own staff, is learning how to delegate and tell people what to do and what not to do. In many cases PAs need to know what their responsibilities are without being told repeatedly. You don't want to have to tell your PA to do the washing up every time you have had a meal.

So for certain tasks you have to establish a set routine. Here a written check-list of PA's tasks and responsibilities can be extremely helpful. If routine chores like 'watering the plants', 'walking the dog', 'washing the windows' are written down, your PA will know exactly what they have to do and when.

For other daily tasks such as choice of meal or clothing the PA user will want direct control. Consequently it is important for users to decide when to delegate and when not to.

It is also important that users remember that PAs need to be respected as people and told when they are doing a good job. Such considerations can only strengthen and build a good working relationship. As disabled people, we know only too well how hurtful it is to have our humanity ignored or to be treated like an object. We should never allow ourselves to treat others as we may have been treated in the past.

Finally, it is important to remember that at this point in time the job of PA is not well recognised and does not have the status of other comparable occupations. We should take every opportunity to resolve this situation and try to give the work the status it deserves.

Example 1

Personal Assistant Check List

Personal Care
Getting up - How long does it take?
Going to Bed - What is involved?
Night Assistance - When and How Long?
Washing - Special Requirements?
Dressing - How much assistance is required?
Bladder and Bowel Care - Use of Equipment? What time of day?
Grooming - Any special needs?
Exercise Routine - Type and frequency?
Eating - How Much assistance needed?


Domestic Needs
House cleaning - How often?
Shopping - Time involved?
Laundry/Ironing - Time involved?
Meal Preparation - What is included?
Maintenance of equipment - Planning and Decision making?
and other household tasks
Child care - Tasks involved


Non-Domestic Needs
Employment - Routine?
Study - Number of days per week?
Visiting friends/relatives - How much assistance needed?
Meetings - How much assistance needed?
Entertainment - How much assistance needed?
Correspondence - How much assistance needed?
Paperwork/paying bills - How much assistance needed?

Example 2

A Job Description for a Personal Assistant

It is the job of the personal assistant to assist the disabled person in all areas of personal and domestic need and to act as an escort and aid to the disabled person's social and day to day activities.

By providing assistance at the right time the disabled person is enabled to lead an individual and independent lifestyle in their own home within the community.

The personal assistant should understand their role in facilitating the self-defined needs of the disabled person. They should feel confident to ask what the disabled person needs, to always listen to the requests, and to interpret them correctly.

Assistants should be able to handle the physical skills of lifting, handling, pushing and bending. The personal assistant does not have to be a strong person physically to do the job well. However, general good health is important.

Personal Requirements

• Washing and bathing in bed or in bathroom.
• Grooming: attention to hair, nails, feet, skin, eyes etc.
• Dealing with continence management. Assisting in maintaining a bowel and bladder routine.
• Assistance dressing and undressing.
• Helping in and out of bed/wheelchair. Assistance to turn in bed and toileting during the night when providing 'sleeping in' cover.
• Daily physiotherapy exercises. Movement of limbs as required, mainly in the mornings.
• Serving and cutting of food as required.
• General domestic duties.
• Making and changing of beds.
• Assisting with shopping and other associated tasks.
• Preparing and cooking of meals.
• Assistance with looking after children.
• General housework, including the cleaning and dusting of rooms, furniture and fitments and other household maintenance.

Other duties

• Preparation of car in mornings and prior to use and general cleaning of the vehicle.
• Assistance in and out of car.
• Maintenance to exterior of house; i.e. clearance of snow from paths, cleaning windows etc.
• Upkeep and maintenance of equipment; i.e. wheelchairs, hoists and other technical aids.
• Escorting to business and social meetings and events.

Note: All needs will vary daily and the personal assistant's duties and tasks will fluctuate accordingly.

Personal Assistants Responsibilities

As far as possible, resolve any questions regarding the job prior to beginning work.

Arrive at the agreed time ready to work. Give notification if you are going to be more than ten minutes late.

It is important to establish a close working relationship when working on a one-to-one basis. If any problems arise it is important to discuss and resolve them as soon as possible. Be as open in your communication as possible.

Confidentiality: respect the privacy of the person you are working with. Many problems can arise from casual conversation about the help and assistance you might give. Try to maintain a professional approach at all times.

Attitude: appreciate the strains and stresses involved for the disabled person and the effect that this can have on the acceptance of help. Understand that the preservation of dignity and independence is important.

Learning the Tasks Involved

For the most part, areas of assistance can be learned and familiarised through the assistant and disabled person working together. Where required practical training and guidance will be provided.

Points to Bear in Mind

Personal assistants should respect the possessions of and equipment in the disabled person's home. Use of the telephone, television, radio, etc. should only be with the disabled person's prior consent.

Qualifications and Personal Qualities Required

Personal assistants should be:

• reliable and trustworthy
• able to accept responsibility
• able to work on their own and work with initiative as the occasion arises
• clean and have no unhygienic habits
• willing to learn the job well
• diligent
• conscientious

Example 3

Information for Prospective Personal Assistants

Following a driving accident in June 1986, when I was aged 24 I became a wheelchair user. I broke my neck and have little movement or sensation below my shoulders. I can, however, move my arms, although not perfectly, and I am able to do many things around the house - eating, drinking, shaving etc. - and at work I use a computer and a telephone. I can also drive.

There are, though, other things with which I need help, such as getting in and out of bed, dressing, transferring to and from a car - it is for these things and general help around the house that I employ personal assistants.

I find this rewarding in many ways. I am able to live in an active and interesting way, in the way I choose, and gain an insight into life elsewhere. The Personal Assistant's work is very much appreciated and all those who have worked for me have made many friends and enjoyed their time here.

Specific Tasks

Each day I need help dressing and getting out of bed. I generally leave for work at around 8.30 am.

I require the apartment to be kept clean and the usual washing and ironing to be done. Normal shopping and cooking is also needed. I am not a vegetarian nor am I on a special diet. There will certainly be generous amounts of spare time during the day. Some staff in the past have used this time to attend an excellent language school at Lancaster University, others have taken part-time jobs or gone horse riding nearby.

Two nights a week I attend night school and need to be driven there and back. I have both a manual and an automatic car. Each evening I also need help undressing and getting into bed.

The method of moving from wheelchair to bed/car is by a special lift known as a Standing Transfer. This lift has been devised by physiotherapists to make lifting easy and removes any danger of straining the lifters back. Full training will be given in the use of the Standing Transfer. I am 5 feet 10 inches tall and weigh 10 stone. Anyone of 5 foot 2 inches and 8 stone or more can lift me easily.

I will also need help with toileting and showering. Again full training will be given on the use of suppositories and any other special equipment.

No experience or knowledge of nursing is needed - just a willingness to learn. Normally, it takes less than 2 weeks to learn the routine and help is always near at hand.

Living Arrangements

My apartment is attached to my parents' home and they are invariably close by should assistance be needed. In fact I work with my father. I work in advertising and marketing and there may be occasions when help in the office is needed.

Your room is in their house; it is private and allows you your own space. It has a stereo and a colour TV. A private bathroom is provided. The house is in a beautiful part of Lancashire and has a large garden, dogs, a cat and some chickens. There is easy access to the Lake District National Park, the Yorkshire Dales and the cities of Lancaster, Manchester and Liverpool.

You will have access to a small manual Suzuki van, which has been adapted to take a wheelchair, as well as an automatic Vauxhall Astra, which I am able to drive too.

Time off is by arrangement. As described above there is a good deal of free time during the day but I normally try and give one evening a week free together with weekends if I visit friends living locally.

It is certainly possible to arrange for your friends to stay and visit.

About the Area

My home is in a small village approximately 3 miles from 2 small towns and 1 2 miles from the city of Lancaster. Our village has good train and bus links to local towns and on to the national transport networks. Living in a village you will find that there is much to do if efforts are made to find activities that interest you. The area is busy but is not one of bright lights and ready made entertainment like London. Lancaster is the twin town of Aalberg in Denmark and has good shops and excellent educational and sports facilities at the University.

The area is one of great natural beauty with walks in the hills and around the lakes in nearby National Parks. The larger cities of Manchester, Preston and Liverpool are within a one-hour drive and have excellent shopping and other facilities.

I enjoy going out to eat, the cinema, theatre and seeing friends. Other interests include driving, sports, reading and music.

Qualifications and Employment Arrangements

No formal qualifications are needed except a driving licence. Desirable qualities are a sense of humour, general fitness and well being, a degree of patience, a willingness to learn and a willingness to live as a member of a happy, busy and active household. I do not smoke and smoking will not be permitted in my apartment, although it is in my parents' house and in your room.

Normally I work on a one week trial period to see if you will be happy with the work and living here. If so I usually agree a time scale of 3/6/9 months with any problems or queries tackled as they appear - holidays are by arrangement.

The pay is in addition to all reasonable living costs except telephone and I always pay one week in arrears on a Friday with any taxes to be discussed.

Example 4

An Application Form

Within the nature of the work for which you are applying, this position is exempt from the provisions of Section 4(2) of the Rehabilitation of Offenders Act 1974, by virtue of the Rehabilitation of Offenders Act 1974 (Exemptions) Order 1975. Applicants are therefore not entitled to withhold information about convictions which for other purposes are 'spent' under the provisions of this Act. In the event of employment, any failure to disclose such convictions could result in dismissal. Information given is confidential and will only be considered for the purposes of this application.

1. Full name
2. Address
3. Telephone Number
4. Age
5. Nationality
6. Religion
7. Do you smoke?
8. Do you hold a current driving licence?
9. Details of any convictions or endorsements
10. Do you have your own transport?
11. How would you travel to work?
12. Are you willing to work regular weekends?
13. Are you willing to 'sleep in' occasionally?
14. Are you able to respond to "crisis" call outs?
15. Details of any experience of residential or care work?
16. Do you mind animals?
17. Any hobbies or special interests?
18. Educational Qualifications.
19. Why are you applying for this job?
20. Please give details of previous employment history:
Name and Address of Employer
Start/Finish
Job Description.
21. Name and Address of two Referees (one personal, one professional)
22. When would you be able to start?
23. Any additional information relevant to this Application.
24. The particulars entered by me are to the best of my knowledge a true and complete record.

Signature

Date

Example 5

Interview Check List

Name
Address
Telephone
Where did you see the post advertised and on what date
Age
Do you have a current driving Licence?
Do you have your own transport?
Are you a smoker or a non smoker?
Can you cook?
Are you able to work flexible hours?
Are you able to work split shifts?
Will you require accommodation?
Do you have any health problems?
Have you any personal commitments?
(As appropriate) How does your partner view this type of work?
Have you any previous experience of this type of work?
What are your personal interests?
Do you mind working a trial period?
Have you any references from your previous employer?
Why did you apply for this particular post?
Comments:

Example 6

Personal Assistance Rota and Work Sheet.