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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