Children and Young People with Disabilities in Northern Ireland Part I: An Overview of Needs and Services

Author(s): Marina Monteith, Patrick McCrystal and Dorota Iwaniec
Commissioned by: DHSS (NI) and 4 Health and Social Services Boards (NI)
Document Type: Report
Year: 1997
Publisher: Centre for Child Care Research, Queen's University Belfast
Place of Publication: Belfast
ISBN: 1-900725-04-5
Subject Area(s): Disability, Social Care, Health
Client Group(s) : Children, Disabled, Families, Young People, Lone Parents

Abbreviations: NI - Northern Ireland, DHSS (NI) - Department of Health and Social Services (Northern Ireland), HSSB - Health and Social Services Board, PPRU - Policy Planning and Research Unit

Background to the Research

  • The literature and various studies describe children with disabilities and their families as being disadvantaged in many different ways in comparison with non-disabled children. The Children (NI) Order 1995 holds out to disabled children the probability of new safeguards and fuller social integration. Children with disabilities are to be recognised as children first, with the right to have their particular needs met by the provision of services. They are included by definition amongst children 'in need' (Article 17) and are therefore eligible for family support services (Article 18 and Schedule 2).
  • A prevalence study published in 1992 by the PPRU identified 14,600 children under the age of 16 in NI as having some level of disability: 2,600 of these children fell into the study's most severe category. The rate of disability was 35 per thousand of population under the age of 16. This was a slightly higher rate than that found in Great Britain (32 per thousand). The rate in NI was found to increase with age and was higher for boys than girls.
  • In light of the numbers of disabled children, their disadvantage and the requirements of the new legislation, a three year research study was funded to examine service provision for children and young people with disabilities and the implications and the initial impact of the Children (NI) Order with regard to these services.

Research Approach

  • This report focused on the first stage of a three year study (see Monteith and Sneddon, 1999 and Monteith and Cousins, 1999 for parts two and three). The aims of the first stage of the research were:
    • To set the scene for the project as a whole by outlining the historical context of provision for disabled children and their families, the current legislative framework in NI, the issue of definitions of disability, and the prevalence rates of disability among children in NI.
    • To review the research literature in the UK regarding the needs of, and service provision for, children with disabilities and their families.
    • To identify what is currently known about the extent of need and the provision of services for disabled children in NI, prior to implementation of the Children (NI) Order 1995, outlining where possible any gaps in service provision.
  • The first stage of the study involved a comprehensive literature review to inform the whole project, and analysis of existing data sources and policy documents regarding the extent of need for services for disabled children and young people, and the social care services provided for them. In addition, 20 in-depth interviews were completed with key informants in statutory and voluntary agencies.

Main Findings

  • The literature review chapter of the report provided an overview of available literature regarding children and young people with disabilities indicating that:
    • Legislative changes during the 1980s and 1990s have for the first time provided for the development of services to support disabled children and their carers (Education Act 1981, Education and Libraries (NI) Order 1986 and Education and Libraries (NI) Order 1987, Disabled Persons (NI) Act 1989 and Children (NI) Order 1995).
    • With the introduction of the Children Act 1989 in England and Wales and the Children (NI) Order 1995 in NI, disabled children for the first time had the same rights as non-disabled children and were included in the definition of 'children in need'.
    • The Children (NI) Order 1995 requires each Trust to set up and maintain a register of disabled children in their area, and to provide services for them 'designed to minimise the effects of the disability' and enable children to lead lives as 'normally' as possible.
    • Definitions of disability differentiate the traditional purely medical model being challenged by radical social models of disability.
    • The medical model concentrates on illness, disorders and defects. The World Health Organisation's Classifications (1980) definitions provide some shift from a purely medical model, but it is argued that this is still medically orientated, and that a further shift beyond this classification is necessary.
    • The social model defines disability in terms of the social factors which create barriers and deny opportunities, including prejudicial attitudes and physical environments.
    • PPRU conducted a survey between 1989 and 1990 on the prevalence of disability among children in NI. This survey estimated that 14,600 children under 16 years are disabled, with 2,600 in the highest severity category. It also found, in the year prior to the survey, that only 13% of disabled children had received social care services at home and only 4% had received respite care.
    • Research on the needs of children with disabilities indicated that these include the need to minimise any effects of their disability, social and emotional needs, and the need to develop ways of dealing with being seen as different from other children.
    • Parents of disabled children also have needs as carers, including the need for financial help, practical help, help with planning for their child's future, help in aiding their child's development, time to spend with other family members, a break from the caring role and the need for information about services.
    • Families will have different needs depending on their circumstances, and so each disabled child should have his/her needs assessed, taking into consideration the needs of his or her parents and siblings.
    • Research on services provided for disabled children and their families had found inadequate levels of provision. For example, research post Children Act 1989 had found that most local authorities in England and Wales provide respite care, but less than 1 in 20 children with disabilities have access to respite care This was similar to the estimated numbers of disabled children in NI who had access to respite care the year prior to the PPRU survey (PPRU, 1995).
    • Research in Great Britain also pointed to the higher financial expenditure incurred, and the lower incomes experienced, by households with disabled children in comparison to households with non-disabled children.
    • The shift away from institutionalised care to foster care had resulted in the closing of residential units and appeared to have increased the use of residential schools in Great Britain to provide care for disabled children. Researchers in Great Britain pointed out that little is known about children living in residential establishments, including why or how they had come to live there. There were concerns about the quality of care received by those children who spend much of their life in residential schools.
    • Research on the transition to adulthood for disabled young people has raised a number of issues, including social isolation after leaving school, a lack of self confidence and self esteem and difficulty finding and keeping a job.
    • Some research findings have pointed to the increased vulnerability of disabled children and an increased risk of abuse. However, it has ben argued that most of this research was not methodologically sound. She believed that good empirical, methodologically sound research was needed to provide empirical evidence about the abuse of disabled children.
    • Progress in the implementation of registers of disabled children in England and Wales was found to be slow. Researchers expressed concern about the piecemeal approach to their implementation. In addition, the use of registers in service planning and in the assessment of need was found to be limited by the way in which they were being set up.
  • The chapter examining the need to provide personal social services for disabled children and their families in NI outlined what is known about the factors which influence the type of services required by disabled children and their families in NI using existing sources of information (e.g. PPRU surveys of disability).
    • The PPRU prevalence rates were one of the main sources of information used for determining the extent of need for services for disabled children and young people and their families. Analysis of their documentation found that HSSBs and Trusts also used contact levels, caseload information, census data, and deprivation indices to help estimate the extent of need.
    • The PPRU survey on the prevalence of disability among children estimated a total of 14,600 disabled children in NI. However, during the year ending 31 March 1995 only 2,883 children with disabilities were in contact with Health and Social Services Trusts.
    • In comparing PPRU estimates and Trust contact levels authors indicated that a large number of children with disabilities are not in contact with Trusts or receiving services. Not all disabled children and their families need, or indeed want, services provided for them, but of the 14,600 children in NI estimated by PPRU to have disabilities, it would seem that approximately one fifth have had contact with a Trust in the year ending March 1995.
    • Aggregated information was needed regarding the family and social circumstances of children with disabilities in NI in order to plan services and effectively target resources. The registers of children with disabilities should provide this type of information in addition to identifying numbers of children with different types and severities of disability.
    • The establishment of these registers by Trusts, as required by the Children (NI) Order 1995, was at a very early stage. Decisions had yet to be made on a way forward, although Module V of the Child Health System had been proposed as a possible mechanism. An operational definition of disability needed to be agreed before the process of setting up the register could get underway.
  • The chapter examining the position of services for disabled children and young people and their families prior to the implementation of the Children (NI) Order 1995, drawing on material from policy documents and in-depth interviews with key informants, indicated that:
    • The overall picture was one of a range of services, including respite care, day care, domiciliary support and information and advice, provided by both statutory and voluntary agencies in many cases through a partnership between Trusts and voluntary bodies.
    • Service provision policy was in a stage of transition with organisations in both the statutory and non-statutory sectors, working to develop policies to meet the requirements of the Children (NI) Order 1995.
    • A priority issue for both Health and Social Services Boards and Trusts was the implementation of policies to meet the requirements of the Children (NI) Order 1995. The Education and Library Boards viewed the Order as social service legislation, and felt they would react when appropriate.
    • The voluntary sector, particularly the larger agencies such as Barnardo's and Mencap, were following the lead set by the Health and Social Services Boards and Trusts.
    • Implementation of the Children (NI) Order 1995 had not progressed further than the revision (or revising) of policy.
    • All statutory agencies were in the process of developing or revising policy in the light of the new legislation.
    • There was much optimism regarding the philosophy of the Children (NI) Order but at the same time worries were expressed about the feasibility of providing the necessary services due to financial restrictions.

 


 

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