ORB: Health

Childhood Disability and Health and Social Services Policy in Northern Ireland

Author(s):	Marina Monteith, Eithne McLaughlin, Sharon Milner and Linda Hamilton
Commissioned by:	Barnardo's
Document Type:	Report
Year:	2002
Publisher:	Barnardo's
Place of Publication:	Belfast
Subject Area(s):	Disability, Health, Health Services, Community Care
Client Group(s) :	Disabled, Children

Abbreviations: PPRU - Policy Planning and Research Unit, NI - Northern Ireland, GB - Great Britain

Background to the Research

Recent policy and planning developments such as the implementation of the 1995 Children's (NI) Order, children's service planning and the Health and Well-Being planning have the potential to increase the inclusion of children with disabilities and their families into planning processes and service provision, but as yet none of them have been explicitly dedicated to increasing the quantum of public services available to disabled children.
Research has shown that the provision of social services to disabled children and their families has been limited, piecemeal and fragmented.

Research Approach

This report begins by presenting the key findings from the 1990 Disability Surveys undertaken by PPRU. These are followed by children's and parent's views in 2001 on Health and Social Service Provision, ascertained through discussions with researchers.

Main Findings

PPRU Key Facts

9% of disabled children living in private households in NI in 1990 had access to the services of a social worker in the last 12 months.
Families in GB with disabled children (11%) were more likely to have contact with a social worker than those in NI.
Children with a consciousness disability were more likely to have access to a social worker (12%).
Almost all disabled children living in communal establishments (96%) had access to a social worker.
One-sixth of parents thought that they needed help from health and social services.
Only 4% of families with a disabled child had received respite or short term care for their child in the last 12 months.
Only 19% of children with the most severe category of disability had access to respite care.
Lone parents with a disabled child (8%) were more likely to have obtained respite care compared to two parent families (4%).
Families of disabled children living in owner occupied housing (6%) were more likely to receive respite care than those living in public sector housing (4%).
Similar proportions of disabled children in GB and NI were using special aids and equipment (33%).
38% of aids or equipment used by disabled children were paid for by Health and Social Services and 32% were paid for by parents or carers.

Children's views in 2001

Children mostly discussed trips to, or stays in, the hospital. Some children were matter of fact about hospital visits, while others discussed visits in more depth, particularly if their visits were longer and more regular.
Several disabled children talked about their medical or technological equipment. Some visited hospital regularly and had made friends while in hospital.
A number of disabled children discussed having to use a nebuliser and doing physiotherapy every day. Some also had physiotherapy sessions in school, while one girl talked about having to miss her school dinner to have physiotherapy.
Mobility aids mentioned included wheelchairs, hoists, seats for the bath/shower, and walking aids. Walking sticks were described as boring by one girl, while wheelchairs were heavy and dull.
Some disabled children did not like regular trips to the hospital.
Several disabled children talked about their personal care needs, such as being helped to go to the toilet or get washed. Managing personal care needs and developing personal autonomy as the disabled young person grows up is an important issue both for families and for those providing education and social services.

Parents Views in 2001 on Social Service Provision

Several parents indicated the need for lighter wheelchairs which would make access for their child easier.
One third of parents said there were aids and equipment that their child currently needed but did not have access to.
One third of parents said that their child was not currently receiving respite care but needed to do so.

Conclusions/Policy Recommendations

Policy makers and service providers need to actively involve parents and children in the planning process and to listen to, and take on board, their views. User implementation is vital.
Financial assistance with aids and equipment should be made more widely available.
Young people should be more actively involved in the design of aids and equipment.
The reduction of the high proportion of severely disabled young adults living in communal establishments should be speeded up.
The inspection of services for disabled children to be carried out in 2002 should explicitly audit social work practice.
Trusts and Boards need to be alerted to the evidence that NI family support services appear to be at a lower level for disabled children and their families than the same group in GB.
The availability and suitability of respite care needs to be reviewed.
Social work support needs to be re-targeted in keeping with New Targeting Social Need principles as low-income families have had less access to this support than have others.