Report from the third research in practice symposium:

Living with Disability: Issues from research about disabled children and children as carers

held in Manchester and Dartington on 26 April and 22 July 2001

introduction

This symposium set out to explore differing aspects of living with disability for children and families.  It considered research messages relating to disabled children and to children who are carers. 

Dr Carol Robinson from the Norah Fry Research Centre at the University of Bristol highlighted issues from research about support for disabled children and their families.

Dr Jenny Morris is a freelance researcher, consultant and trainer on disability issues. She summarised what existing research shows about the needs of disabled children and their families, and discussed the implications of a human rights perspective, as well as exploring what research had to say about giving disabled children a voice in influencing services. Dr Karl Atkin is a senior lecturer in ethnicity and primary care at the Centre for Research in Primary Care at the University of Leeds. He explored some key issues in relation to disability and ethnicity based on research work conducted at the Centre. Professor Saul Becker , Director of the Young Carers Research Group at Loughborough University, provided an overview of research messages for practice about young people as carers.

report written by Frances Rickford, Features Editor, Community Care

Children as carers

Awareness of the needs of children with caring responsibilities has grown rapidly over the past decade, as Saul Becker showed. The Office of National Statistics [1] has estimated that between 19,000 and 50,000 children in England and Wales are providing  'substantial and regular care' to another member of their household - perhaps one in 200 of all 8 to 17 year olds. There are many more children living in households where someone has an impairment or illness than there are young carers - an estimated 3 million or 23 per cent of all children.

A more detailed sample survey of children in Young Carers' Groups carried out in 1997 [2]  found that about two thirds were caring for a physically disabled or ill person, and 29 per cent were looking after someone with mental health problems. The rest were caring for someone with learning difficulties or a sensory impairment. The average age of young carers in the survey was 12 years and girls were in the majority - 57 per cent. More than half lived in lone parent families. Where young carers live in two parent families, their caring responsibilities are often a consequence of both parents being sick, or one parent either working away from home or refusing to carry out caring tasks. One in four families received no professional support at all apart from contact with a young carers' group.

Looking at the tasks that young carers perform, the highest proportion were undertaking  domestic and 'general' caring, such as helping someone get about or giving medication. About one in five was performing' intimate' tasks such as washing or toileting.

Saul Becker outlined the outcomes for children and young people when they take on caring responsibilities without adequate support. Twenty-eight per cent of young carers in the 1997 study were experiencing significant educational difficulties evidenced by, for example, being in contact with an education welfare officer or school psychology service. Another study of longer-term outcomes [3] surveyed young people between aged 16 and 25 who had been carers as children. There had been positive and negative outcomes from their experience as young carers. Many had failed to attain any educational qualifications and their lack of qualifications combined with continuing caring responsibilities meant some were out of the labour market.

Others had found the skills gained as young carers had influenced their career and job choices, and had, they felt, given them greater maturity and a stronger sense of responsibility than they would otherwise have had. They also reported having enhanced life skills and closer relationships because of their caring experiences, but their job choices had been restricted by lack of qualifications. Some young people had also had problems leaving home and some had delayed leaving home because of their parents care needs although where parents had mental health problems some had left home prematurely. Some reported adverse long term effects from the stress, depression and restricted social and other opportunities caused by caring without adequate support.

New legislation and policy should provide better support to young carers. The 1995 Carers Act gives all carers the right to have their needs assessed when the service user is being assessed, but only 11 per cent of young carers have been assessed under this Act or under the Children Act.

The 1999 National Carers Strategy [4] introduced a range of service expectations including asking local authorities to identify children with extra family burdens, developing more respite care services, designating a link person in every school, improving counselling services for young carers and opening more young carers' projects.

The Carers and Disabled Children Act 2000 gives carers only aged over 16 a right to services and to direct payments in lieu of services, but the new Framework for the Assessment of Children in Need and their families [5] has a section on young carers which specifies that children should not be expected to carry inappropriate caring responsibilities which have an adverse impact on their development and life chances. As well as being assessed under the Carers Act, local authorities should consider whether a young carer is a child in need under the terms of the Children Act 1989 and if so requires services to support them while not undermining the parent.

supporting disabled children and their families

Jenny Morris summarised the evidence from existing research about the needs of disabled children and their families. She pointed out that there is much more research about the needs of parents than about the needs of disabled children, and drew attention to the risks attached to some current service provision of infringing the human rights of disabled children.

Jenny Morris began by explaining why it was important to adopt a social rather than medical model of disability when thinking about disabled people and their service needs. For many years, she said, disabled people have been told they are disabled because of what is wrong with them. But as a Manchester Young Disabled People's Group has put it, 'Society puts barriers before us which stop us from taking part in society properly - it disables us' [6] .

Jenny Morris drew from 17 research projects carried out by a number of different researchers but all funded by the Joseph Rowntree Foundation [7]

Most disabled children in contact with social services have more than one impairment and are not typical of the range of disabled children. For a large number behaviour is an issue and there are an increasing number of children with significant and multiple impairments, and children with autistic spectrum disorder. In the average health authority there are 250 families with two or more disabled children.

The parents of these children face major barriers to employment and many are living in poverty as a result. They also need better access to advice and advocacy about housing, and support which is flexible in terms of its timing and its type. Respite by placing a child away from home isn't always the answer. Sometimes what is needed is for example help to manage a sleep problem, or practical help when a new baby arrives.

'All parents need a break from looking after their children but for these parents the normal ways of getting a break are not available,' Jenny Morris argued. Disabled children themselves need the chance to take part in activities they enjoy, opportunities to learn new things, and to make friends. Disabling attitudes among the general public need to be challenged as one of the things that most inhibited family outings was the attitudes of other people to disabled children.

Jenny Morris described how support services could meet the needs of disabled children as well as their families if they were flexible enough. One young man of 15 with autism was very interested in building and enjoyed visiting building sites. His mother needed a break from the difficulties of coping with his behaviour and he has been allocated a worker to take him round building sites. So his mother gets a break but he gets to do what he enjoys doing.

Families and children both need better information and advice about services, and also want to be able to get in touch with others who have a similar impairment. But studies have shown that statutory services rarely included that need in an assessment or helped children or their families make those kinds of contacts.

Research shows that contrary to racial stereotypes, black and other minority ethnic families are less likely to get help from extended families than white families, and also have higher levels of unmet needs. Drawing on recently completed research [8] , Jenny Morris pointed out that many disabled black children in residential special schools spend much of their childhood without contact with other people from their ethnic background or culture.

Children with communication impairments are in many cases having their human and legal rights flouted when professionals fail to consult them about decisions which have a big impact on their lives. Research on the implementation of the Children Act and disabled children found that assessments and reviews routinely fail to 'ascertain the wishes and feelings' of disabled children [9] .

Jenny Morris recommended a video recently produced by Triangle and the NSPCC on consulting young people with communication impairments [10] . Instead of saying 'he can't speak' professionals should reformulate the problem in terms of their skills: 'I don't understand his speech', or 'I don't know how to enable her to communicate with me. I need to find out'.

Jenny Morris also argued that disabled children living away from their families need the support of a substitute family as much as other children who cannot live with their own families. 'They are being denied their human rights by services which separate them from their families, from their non-disabled peers and from the local community.' She emphasised the need to ask children and young people how they feel about what is happening to them and to listen to their answers. She also called for more dissemination of good practice being developed by professionals and others in response to these issues.

supporting children with complex health needs

Children who have complex health needs and their families are a small but growing group who face very particular issues. Carol Robinson talked about some of the issues facing them while Karl Atkin discussed his research into the needs of children and young people with two specific illnesses, sickle cell disorder and thalassaemia.

Carol Robinson drew from two studies carried out at the Norah Fry Research Centre [11] , one into the needs of tube fed children and their families and the other into the way families of children with complex health needs use children's hospices. Services for children with complex health needs - including those who are tube fed, or need assistance with breathing or dialysis, or those with tracheotomies for example - as patchy and inconsistent. In some areas, respite services were able to accept children who were tube fed, in others foster carers had been told they could not carry out any invasive procedure including artificial feeding. Provision at school was also patchy. Tube-fed twins for example were having to attend school on alternate days because there was only one school nurse there for one hour a day.

In some areas families found it very difficult to get the equipment and supplies their child needed including the right feeds and tubes in the right size. The needs of the children were such that there was a lot of night-time disturbance - sometimes caused by the technology itself. Housing presented a serious problem for many families, especially the problem of storing bulky equipment. Some families were living in very cramped conditions so that even if they were able to get someone to relieve parents at night, the carer could not avoid disturbing the rest of the family.

Families reported lack of service co-ordination, conflicting advice, too many visitors but not enough practical support. And although this group of children are expensive to support and many are likely to survive childhood there was not a single example of planning by agencies for their future care. Families had problems getting information about services, eligibility criteria and the impact of particular treatments, especially the long term implications for the family and for the child. Minority ethnic and linguistic groups had very serious difficulties in getting information.

Recommendations included a community service co-ordinator with an overview of the whole package of support the family was getting. They should have a specialist knowledge of the child's condition and good links with all agencies. More practical support for these families is needed. For example, argued Carol Robinson, it would not be impossible for one person at the local leisure centre to be trained to carry out some procedures. Families also want a 24 hour support line, and a better co-ordinated short break service. Parents whose child needs a lot of invasive treatments to be able to survive need a lot of emotional and practical support themselves. They also need to be given health information in a way they are able to absorb. This means giving it in small chunks, being prepared to repeat it and giving the parents something to take away with them.

Transition arrangements need to be improved as, currently, adult services cannot fund the care services set up by children's services once the child reaches 18. Agencies need to work out how many children are 'in the pipeline' and prepare for the transition. 'This is a small group, and expensive to support, but that doesn't mean they don't have the right to appropriate support', argued Carol Robinson.

Karl Atkin described the experience [12] of young people from ethnic minorities who have sickle cell disorder or thalassaemia, and the stigma, ignorance and prejudice young people with these disorders encounter, including among medical and social care staff. He also explored the relationship between young people with these difficult conditions and their parents, and the tension produced by their parents' protectiveness and the young people's wish to be independent and 'normal'.

conclusion

The themes emerging from the sessions included the need for better service co-ordination, and more appropriate and timely information, and professionals who were better informed about and more sensitive to the particular needs of individual children and their families. Another key message was the damaging impact of social attitudes towards disabled children on those children's lives and the lives of their families, and the need for agencies to ensure disabled children's human and legal rights are fully upheld in the way services are planned and provided.

[1] Walker, A. (1996) Young Carers and Their Families , The Stationery Office

[2] Dearden, C. & Becker, S. (1997) Young Carers in the UK: A Profile , Carers National Association

[3] Dearden, C. & Becker, S. (2000) Growing Up Caring: Vulnerability and Transition to Childhood - Young Carers' Experiences Youth Work Press

[4] HM Government (1999) Caring about Carers The Stationery Office

[5] Dearden, C. & Becker, S (2000) 'Young Carers: needs, rights and assessments' in Howarth, J (ed.) The Child's World Jessica Kingsley Publishers

[6] Greater Manchester Coalition of Disabled People Young Disabled People's Group (1996) Disability Is..Animation Video Resource Sheet 1

[7] summarised in Supporting disabled children and their families: Foundations (1999) Joseph Rowntree Foundation

[8] Abbott, D., Morris, J & Ward, L. (2001) The best place to be?  Policy, practice and experiences of residential school placements for disabled children , York Publishing/Joseph Rowntree Foundation.

[9] Morris, J. (1998) Still Missing? Disabled Children and the Children Act , The Who Cares? Trust

[10] Two Way Street: Training video and handbook about communicating with disabled children and young people . Available from NSPCC National Training Centre, 3 Gilmour Close, Beaumont Leys, Leicester LS4 1EZ. Tel 0116 234 7223. Email: sferrar@nspcc.org.uk .  See also: Consulting with disabled children and young people , Joseph Rowntree Foundation Findings July 2001

[11] Townsley, R. & Robinson, C. (2000) Food for thought? Effective support for families caring for a child who is tube fed. Norah Fry Research Centre

Robinson, C. &  Jackson, P. (1999) Children's hospices: a lifeline for families? National Children's Bureau. Summarised in Joseph Rowntree Foundations Findings: The Role of Children's Hospices in Providing Respite Care (1999)

[12] Aniouwu, E. and Atkin, K. (2001) The politics of sickle cell and thalassaemia . Open University Press. Free summaries of this work are available from the Centre for Primary Care, University of Leeds (0113 233 4835)