K202 4Care and Welfare in the Community

Care transactions

Care transactions

LEVEL 2: INTERMEDIATE

STUDY TIME: 1 HOUR

K202_4Care and welfare in the community

Care transactions

Contents

• Introduction
• Learning outcomes
• 1 Arrangements for care and support
• 2 Audio clip 1: Diane Mallett
• 3 Audio clip 2: John Avery
• 4 Audio clip 3: Enid Francis
• 5 Audio clip 4: Sarah Fletcher
• 6 Audio clip 5: Alex Zinga
• 7 Comment on the audio clips: Benefits and payments
• 7.1 Payments received
• 7.2 What people do with the money?
• 7.3 Other kinds of help
• 8 Comment on the audio clips: Care relationships
• 8.1 Feelings about care relationships
• 8.2 Summary
• Conclusion
• Keep on learning
• References
• Acknowledgements

Introduction

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 course 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.

This OpenLearn course provides a sample of Level 2 study in Health and Social Care.

Learning outcomes

After studying this course, you should be able to:

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

1 Arrangements for care and support

In this audio course, 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.

2 Audio clip 1: Diane Mallett

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.

Audio content is not available in this format.

Clip 1: Interview with Diane Mallett

View transcript - Clip 1: Interview with Diane Mallett

3 Audio clip 2: John Avery

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.

Audio content is not available in this format.

Clip 2: Interview with John Avery

View transcript - Clip 2: Interview with John Avery

4 Audio clip 3: Enid Francis

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.

Audio content is not available in this format.

Clip 3: Interview with Enid Francis

View transcript - Clip 3: Interview with Enid Francis

5 Audio clip 4: Sarah Fletcher

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.