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Introduction

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

This unit is from our archive and it is an adapted extract from Care, welfare and community (K202) which is no longer in presentation. If you wish to study formally at The Open University, you may wish to explore the courses we offer in this curriculum area.

Arrangements for care and support which people manage for themselves or have organised for them privately or informally tell us something about the shifting borders between funded and non-funded care, between health and social care, and between paid and unpaid care work. They also demonstrate how the reality of the mixed economy of care is played out in the arrangements which people make for care and suipport in their own households.

This unit focuses on the care arrangments people make and the kinds of transactions these arrangements involve. In it you will hear from five people, and those they are involved with, talking about the kinds of care transactions they are engaged in.

The audio clips were recorded in 2000.

Participants in the audio clips:

Helen Robinson is the presenter;
Diane Mallet is a carer;
Enid Francis is a carer;
John Avery is a carer;
Sarah Fletcher is a disabled student;
Katherine Shipley is Alex Zinger's daughter;
Alex Zinga is in need of caring;
Stanley Mallet is in need of caring.

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Learning outcomes

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

On completion of this unit, you should be able to:

understand that people who give and receive help and support depend on a mix of paid and unpaid sources.

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1 Arrangements for care and support

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

In this audio unit, Helen Robinson interviews five different, but not untypical, people who have set up arrangements for care and support, which suit themselves and others. All the arrangements involve cash payments, or have done so at some point in time. However, they all also include transactions which, though they aren't made in cash, involve other forms of exchange – goods, emotions, knowledge, and/or help.

Before you listen to each of the clips, take time to read through the notes about the person who is being interviewed. This will provide you with valuable background information.

As you listen, note down the following details:

who mentions which benefits and payments, and what they are;
what people say they do with the money they and others get;
what other kinds of help people say they get, whether they pay for it and who provides it;
how they feel about the care relationships they're in.

In Sections 7 and 8, you will be provided with commentaries on all five of the audio clips.

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2 Audio clip 1: Diane Mallett

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Figure 1: Diane Mallett with Stanley mallett (left) and Paul Mallett

About seven or eight years before the interview, Diane and her husband Roger arranged for his parents and brother to move next door. Roger's mother had become seriously ill with Parkinson's disease, and Diane became her main carer. For this, she received a carer's allowance, as her mother was given Attendance Allowance. She explained:

It didn't alter what I did for her. I'd have done it anyway, even without the caring allowance. You still do those things. It did make a little bit of difference to my life. It wasn't a great deal of money, though. I think it was only in the region of thirty pounds. I think she was felt that she was glad that I'd found out about it, because she had no idea it existed. And I'm sure she felt that it went some way towards phone calls that I would have made, and trips, you know, in the car … petrol expenses, that sort of thing. Sure she felt that was a good thing.

After her mother-in-law died, Diane concentrated her efforts on helping her brother-in-law, Paul, who had learning difficulties, and had led a sheltered life. She organised social activities for him to attend and supported him at events and activities, getting to know the organisers and leaders to find out what was available for him.

Paul had not previously had any Disability Living Allowance (DLA), and Diane filled out the forms and got this benefit for him. She also involved Social Services, who organised daily activities at educational centres, and ‘travel-trained’ him, making him more independent. Eventually Paul found a place at an adult Training-For-Work Centre in Birmingham. He gained skills and certificates in numeracy, literacy, computer skills, and painting and decorating. Paul had a degree of disability in his feet, for which he had only recently been assessed. He had experienced a number of falls, which Diane had helped him to recover from.

Paul wanted to leave home after his mother died, and went to a residential home. Getting this place took some time, and was a process fraught with distressing incidents. Unable to claim the higher rate of DLA, and despite an appeal to a Tribunal, he was not able to afford the residential home he originally chose. He ended up in lodging accommodation in a poor inner-city area. This proved a disaster and, for a while, he returned to live with Diane and her husband. He was finally given a place in a residential home not far away from them.

Stanley Mallett lived on his own next door to Diane and her husband. She was finding that they were getting more and more involved in his affairs. He was hard of hearing, had asthma and had been in hospital twice with chest infections. He did his own cooking, cleaning and shopping.

At one stage, Diane was looking after six people: her parents-in-law, brother-in-law and her three children, including a stepson who was on drugs as a teenager and receiving psychiatric help.

In return for the support he received, Stanley would help out where he could. Paul liked to help in the garden and always remembered birthdays. Sometimes he gave Diane money towards postage and petrol.

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3 Audio clip 2: John Avery

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Figure 2: John Avery (right) with Mr Asghor

John Avery, a single parent of a teenage son and a daughter, lived on a council estate on the outskirts of Sheffield. He had been unemployed since the business he jointly ran went bankrupt. At the time of the interview, he had become the main carer for his ex-business partner, Mr Asghar, as well as for his children. His son had recently been the victim of a serious traffic accident and was being taught at home, still requiring hospital care.

John and Mr Asghar first met in 1982 through the antiques trade, and he described their friendship as close and based on trust and sharing what they have.

Mr Asghar had had diabetes for some years. At 75, some complications had set in, not helped by the effect of war wounds from the time he served with distinction in the British Army during the Second World War. He received nursing help from his doctor's surgery, but the day-to-day caring was carried out by John.

The men lived about half a mile from each other and John visited three times a day, with cream for his skin condition. He also helped him out with food and clothes shopping, and was on hand when there were crises. Like many other people from the Indian subcontinent, who had grown old in Sheffield, Mr Asghar was recruited directly to work in the steel industry. He was made redundant in 1984, after which he started trading in antiques. Mr Asghar had a brother, sister and son in England, but his closest relationship was with John, who described the relationship as like father and son.

John explained that he had taken up issues on Mr Asghar's behalf with Social Security and the Benefits Agency over the years. He managed to get him assessed for Disability Living Allowance and Attendance Allowance and also got him a washing machine and a cooker, after he applied for grants. All these things took time. It took him two years to get a handrail fitted in Mr Asghar's toilet, and it was eight years before Mr Asghar was deemed eligible for Attendance Allowance. He felt that this was all an unnecessarily difficult struggle, and had strong views about how the state should help people who have paid taxes during their lifetime, and how carers like him are saving the state money. As far as he was concerned, money wasn't a factor in his relationship with Mr Asghar:

It's a rare friendship we have, that's not heard of or maybe seen in this country. Nobody can understand it. You can't put a word on that sort of bond. I'm bond with him, not in a sexual way, or any other way. It's just on mutual respect, of what we've gone through the last eighteen years together.

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4 Audio clip 3: Enid Francis

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Enid Francis lived in a modern residential area on the outskirts of Derby. She shared a house with her husband, Wally, and two grown-up sons, Mark and John. Her husband had had to give up work eighteen months before his retirement, because of a heart complaint. Their two sons, aged 35 and 32, were both autistic. Enid's day was organised around meeting their needs for care and support. On weekdays, they attended a day centre, which she would have to get them ready for. When they came home in the evening, she showered them, got them into clean clothes and prepared their tea. If it was fine, they would go for a walk, or a drive.

With her husband at home, she had more help than she had had before. However, without his wage coming in, she worried about how they would fare financially. Social Services paid for someone to come in for an hour-and-a-half a week, to help with ironing. That was all the help she got with care at home. At first, she didn't have to pay for this service, but recent changes in local charging policy meant that she then had to pay the minimum charge. The family were also assessed by a community nurse, and this led to their getting a shower room.

Enid and her husband were born in Jamaica. Her first job was in a weaving factory. Later she worked as a nursing assistant at a mental hospital. After her sister returned to Jamaica, the family had to rely on Wally's relations for support. She appreciated their help, as well as the support she got from two close friends.

Her two sons, Mark and John, got Income Support, Disability Living Allowance and Attendance Allowance. On this basis, Enid received an Invalid Care Allowance. She worried about what would happen when she turned 60 and was no longer eligible for ICA. She talks about the costs of care, but also about her commitment to her sons.

At times, she had applied for Mark and John go into residential care on a respite basis. She paid £52 a week for each place. Enid was cynical about Social Services and social workers. She would only ask for help if she was desperate. As she saw it, people like her didn't get help, because she managed to have a ‘decent home’. She had been involved in carers' groups over the years and went on to help in the launch of a Caribbean Association of Carers. She's found out that people didn't know what they were entitled to, so one of the things she did was to help other people claim the benefits and allowances due to them.

Enid contrasted her situation with that of other people she knows, who have put their children into residential care and returned to work, earning salaries and providing for their old age. As she says:

They're my children, and it's my duty to look after them. At the end of the day, I've saved the government … I'm going to say, pretty near a million pounds.

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5 Audio clip 4: Sarah Fletcher

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Figure 3: Sarah Fletcher

At the time of the interview, Sarah Fletcher was 23 and disabled. She had just finished her degree in Social Policy at Loughborough University, and was taking a Masters' degree in European Studies, part time. She lived in a hall on campus, and got direct payments to fund 22 hours a week of care and assistance.

Sarah had a car and an electric scooter. Her car and wheelchair made it less tiring to travel to lectures around Loughborough's big campus. She wasn't eligible for an allowance from the Independent Living Fund, but she did have a grant from the Snowdon Award Scheme (for disabled people over the age of 16). This helped to pay for help with taking notes. She was also able to get extra help with academic work if needed.

At home, Sarah used her direct payment to pay family friends to help her. At university, she used a scheme run by the charity Community Service Volunteers (CSV). CSV ran a scheme for people aged between 16 and 35, who were interested in being full-time volunteers in health and social care. Projects included placements with adults with learning difficulties, young people at risk, and families in need. These required a commitment of between four and 12 months. In return for helping, volunteers received free accommodation, free food and a weekly allowance, induction and support as well as back-up from CSV. Sarah paid the university, which then passed on an allowance to the volunteers.

Sarah explained that using CSV volunteers was cheaper for her. Because she used the university scheme, she could save up some of her hours and use what was left from her direct payment funding to pay other helpers when she was at home. She paid £5.20 an hour, which she thought less than she would be paying through an agency. The CSVs got an allowance of £26.50, and their accommodation and food paid for. The balance of the payment went to CSV to cover administrative costs.

Sarah liked the CSV volunteers because they tended to be students like herself, and flexible in their attitude to working with her. Using the CSV scheme also meant she didn’t have to do any of the interviewing. That side of the work was done for her. However, the system didn't always work in the way she wanted. When it came to matching volunteers with users, she and the other disabled students were each sent a profile of someone who was offering to volunteer. If they turned someone down, they had to wait for another profile to be sent, which meant that sometimes the beginning of term got dangerously close while they were deciding. She also found that some volunteers didn't always match up to the details supplied. One of the CSVs she was working with was able to drive but, coming from Japan wasn't used to British-style roundabouts, so wasn't keen to drive Sarah to places off-campus. She and another student were looking into a scheme they had seen advertised in the Students' Union for driving and escorting. She had had a reply from someone who could help her for another five or six hours a week. In these ways she managed to get the help and support, eking out her direct payment funding.

Getting the direct payment in the first place wasn't straightforward. She was able to get help from the Derby Centre for Integrated Living, with things such as a form for assistants to sign which made it clear that the payments she was making included National Insurance contributions. This meant she could avoid the difficulties of having to calculate tax and insurance for the people who worked for her. Apart from that, there had been problems with her Social Services department's definition of what she needed the direct payments to pay for. For example, it was not prepared to pay for time spent getting to and from lectures, as this was deemed ‘academic’. Sarah had a struggle to persuade them that getting to social activities should also be included in her assessment.

Variations in direct payments policies meant that, while she was lucky with Derbyshire, which allowed her to ‘bank up’ her hours, other service users from neighbouring local authorities found that they lost any hours they didn't use up from their weekly allocation.

If you're ill sometime, you might need more hours over the week than you normally do. And, if they're off sick, you might be, you know, paying their hours anyway. But you'd need to pay somebody else as well.

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6 Audio clip 5: Alex Zinga

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Figure 4: Alex Zinga

At the time of the interview, Alex Zinga had recently turned 60. She lived on her own in a small terraced house in Sheffield. Of her immediate family only one sister survived, with whom she says she didn't get on. Her friends were ‘far flung’. She had had an illness, which made her ‘floppy’ off and on, for over 20 years. It began when she was an air stewardess and came back from Africa with a mysterious paralysis. For a while, she was free of the symptoms, changed career and became a college lecturer in English and drama, among other subjects. With the menopause her condition seemed to return and she needed support with washing, dressing, cooking and cleaning. She opted for direct payments and paid for two carers to look after her during the week.

She also paid the mother of Kathryn Shipley (one of her carers) to do the cleaning. Kathryn's husband would occasionally do odd jobs for her – shopping trips or outings. For example, the night before the interview she had been to a book signing by the writer Germaine Greer, who was visiting Sheffield. She paid for this help with money from the Independent Living Fund. This became possible after she was assessed by the local authority for the higher level of care and was deemed to be in need of 36.5 hours' community care a week. However, she opted for less care than this, preferring to be left on her own some of the time.

Alex preferred to advertise locally for her carers and found that women in their thirties with young children at school worked best with her. She was exacting when it came to interviewing. She liked people to be ‘efficient and clean and tidy and smart and hygienic’, but she was also looking for people who could laugh with her and cope with her straight talking.

With some of the women she has employed she felt she has been as much a counsellor as a boss. Often she had found herself advising them after they've had problems at home with their husbands. She was concerned that some of these young women had been down-trodden and lacking in the motivation needed to change their lives.

Alex got help and advice with sorting out wages, insurance and tax for her personal assistants from the local disability centre, and managed to keep things in order by having a separate bank account for the direct payments. The centre also helped with drawing up the details of contracts in the past.

Kathryn's only similar experience of this type of work was caring for her mother for two years after she had a stroke. She had worked for Alex for two years. Alex paid for her four weeks' holiday and was flexible about time off. Kathryn said that she'd only ever want to work for a woman and that she enjoyed working with Alex. The only thing she doesn't like doing for Alex is rubbing sesame oil into her skin, because it makes her slip and slide. The only skills she thought she needed were being able to lift and cook, and to be tidy and clean. She had got to know Alex so well she could almost anticipate what she needed.

Given that this working relationship felt like a friendship, Alex was asked how she managed the boundary between being a friend and being an employer. She explained:

Christmas and Easter and birthdays, you know, a little something for a little bit of appreciation … you know, this sort of thing. But, apart from that, no, we stick with wages, because otherwise I feel that they might start to expect presents every other week … if, as Kathryn did for me the other week, she made me some flapjacks, I mean she's allowed a flapjack, if she's made them [laughs].

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7.1 Payments received

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Diane Mallett said she didn't get any payment, though she used to get Invalid Care Allowance (ICA) when her mother-in-law was alive. Her brother-in-law, Paul, only got the lower level of Disablility Living Allowance. Diane pointed out that, if he'd been assessed before she intervened, he might have got a higher amount. John Avery said that Mr Asghar got Attendance Allowance. He thought he wouldn't be able to get Invalid Care Allowance, as this would affect his benefits.

Enid Francis' sons got the higher amount of Disability Living Allowance and she received an Invalid Care Allowance. She was worried about what would happen when she turned 60 as she was afraid she would no longer be eligible for this benefit. In fact she would have been able to continue receiving ICA, though her payment would have been adjusted depending on what pension she received (West, 2000).

Sarah Fletcher got a direct payment from Derbyshire Social Services topped up by the Independent Living Fund.

Alex Zinga got a direct payment from Sheffield Social Services. Someone receiving a direct payment would have been assessed by their local social services department, but would receive cash instead of services. The amount of cash Alex received was calculated according to the value of the help she had been assessed as needing.

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7.2 What people do with the money?

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Diane and John didn't get any money.

Enid saved her ‘lads’ money for them, and bought them clothes and other things from what she saved. She spent her ICA on herself, though it didn't sound as if she treated herself to many luxuries.

Sarah's payments went towards the allowances for her volunteer helpers at university. They helped her with making meals, mobility around the campus and getting into town. Sometimes she needed help with personal care, such as washing her hair.

Alex used her direct payment to pay for two personal assistants. She used her pension and other savings to pay for taxis and train fares.

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7.3 Other kinds of help

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Diane said that Paul and Stanley helped her with dog minding, gardening, shopping and other jobs around the house. Sometimes they bought her presents.

John said that what he got from Mr Asghar was the reliability of long-term friendship, advice and support through his various recent problems.

Enid mentioned help from relatives and friends, whom she had come to rely on.

At home, Sarah got help from her mother, who was also disabled. She also got help from other students in her student accommodation.

Alex was pretty much self-reliant, organising transport for herself when she wanted to go out, as well as courses of complementary health care.

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8.1 Feelings about care relationships

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Diane couldn't imagine being paid for what she did. She thought that, if she was paid, she would, ‘have felt obligated to do it’. This way it felt like her choice. ‘I wanted to make those choices freely.’

John described the basis of his caring for Mr Asghar as, ‘a mutually beneficial friendship … always has been’.

Enid emphasised that she looked on her caring as a parental responsibility. ‘They're my children and it's my duty to look after them … they weren't asked to be born.’

Sarah spoke about being a care recipient, and wondered if everything that people did for her was care at all, and if, by calling it care, it made her sound more dependent, ‘as if, in a way, you need more help than you do’.

Alex tried to keep the care she received down to a minimum. She wanted to be in charge and said, ‘I don't want a lot more care. I don't want to feel that there are carers always here, otherwise it feels too much “old lady” for me’.

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8.2 Summary

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

Enid and Sarah mentioned relatives and friends, but the others sounded as if they were managing on their own, or within their immediate family unit. Care work can be an isolating experience. The hours are long. Sometimes they are unpredictable, and being cared for doesn't always mean that you're necessarily going to be able to have the time or energy to develop other relationships. You might like to consider whether demographic changes are likely to have an effect on who is available for care and support, now and in the future. John Avery was divorced, Mr Asghar lived alone and Alex Zinga was single. Perhaps care transactions with non-family members are likely to be the future pattern.

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Next steps

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References

The Open University — Mon, 25 Jul 2011 14:56:43 GMT

West, S. (2000) Your Rights: A guide to money benefits for older people, London, Age Concern England.

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Acknowledgements

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The content acknowledged below is Proprietary (see terms and conditions) and is used under licence.

Grateful acknowledgement is made to the following sources for permission to reproduce material in this unit:

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Figures

Figure 1 Diane Mallett

Figure 2 Mike Luft

Figure 3 Sarah Fletcher

Figure 4 Mike Luft

Audio materials

Unit image

Oliver Gouldthorpe: http://www.flickr.com/ photos/ ollie_g/ 996235604/ [Details correct as of 12 December 2008]

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