BALDWIN Sally, CARLISLE Jane.
Social support for disabled children and their families: a review of the literature.
HMSO/Great Britain. Scottish Office. Social Work Services Inspectorate, 1994.
Summary
A literature review of social support for disabled children and their families commissioned by the Social Services Inspectorate at the Scottish Office from the Social Services Research Unit at the University of York.
Method
The literature review was compiled as a quick exercise to take an overview of material produced in the previous 10 years to identify important themes and gaps, drawing on a small number of important research reports and key policy guidance. Medical care and education were excluded from the reviews.
Contents
Topics addressed are
- The development of social care for disabled children and their families
- Defining and conceptualising childhood disability
- The population of disabled children - numbers and characteristics
- Living with disability - the experiences of parents and children
- Needs for support
- The allocation of resources
- Developing services for disabled children and their families
- New developments
- Future developments - early lessons from the Children Act, 1989.
Findings
The authors comment on the importance of the conceptual frameworks and definitions used in relation to disability in influencing and structuring the support provided. The size and characteristics of the population in question vary according to the criteria used but the commonest individual disabilities appear to be behaviour, communication, mobility, continence, and sensory - often in combination, especially at higher severity levels. The multiple nature of disability is marked, and increases with the overall severity of disability. The population's characteristics are changing because of advances in medical technology - the survival of very disabled children is increasing while the incidence of some conditions is decreasing
The presence of disabled children poses significant financial problems for a family. The risk of marital breakdown is greater when a child is disabled and rises with the severity of the disability. More needs to be discovered as to how parents improve their coping strategies and how the disabled child adapts to and copes with the experiences of disability. Existing research has shown that 'many, many' disabled children are very unhappy and have not found ways of coping with their disability. Research so far has neglected both the child's perspective and the role of external determinants of well-being.
Parents' support needs are for
- Information, support and counselling
- Support to help the disabled child
- Practical support, as in adapting the home environment or providing special equipment and aids
- The need for a break, with or without the disabled child
- Social support
- Financial support
Parents act simultaneously as resources, co-workers and clients and professional practice needs to respond appropriately. Parents need coordination and continuity , 'a single door'. The needs of children have been inferred from parents and professionals rather than by asking directly.
The authors found considerable deficits in the quantity of social support available and in the organisation and delivery of services. Parents want care management, an individually designed and coordinated package of services to help them support the child at home.
Parents 'want a form of service which
- Is based on sensitive and comprehensive assessment of both child's and family's needs, with re-assessment from time to time and particularly at times of transition
- Allows families some choice in the services they can have
- Makes a formal agreement with them to deliver an agreed package of services and does so to an acceptable standard
- Identifies a key worker who will get to know family and child; maintain contact; act as a link across the different agencies and professionals who might be involved; act as their advocate and representative when necessary.
Future demand for services will be affected by
- Changes in the population of disabled children
- Growing recognition of the prevalence of problems among both disabled and non-disabled children
- Demands for improved service in terminal care
- Better services for children from linguistic and cultural minorities
- Need for better support to those in long term care
- Need for child protection work to children in all settings
- Pressure to recognise human rights of the disbaled child
- Effects of the new philosophy of service delivery underlying Caring for People and the Children Act
- Changes in targets and service priorities
- A changing economic and social context.
Conclusion
The Children Act 1989 is welcomed as a good and progressive piece of legislation and one which should improve the social support of families with disabled children.
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