RESPITE CARE FOR DISABLED CHILDREN

Respite Care for Disabled Children

Abstract

This paper identifies the views of severely disabled children about the respite care services they receive and the value they put on these. A sample of 27 children was drawn, and their views obtained using focus groups. This enabled the exploration of the children' own views of what services were important to them. The findings confirm that some services included in more structured questionnaires and interviews are ones that children would spontaneously identify. These include better information, help with activities of daily living, and home-care services. Macmillan nurses and GPs' services are highly rated but not in all areas. The children identify additional services as important to them. These are the provision of something to do, improved hospital visits and respite supports for their family carers. Differences identified across the three trust areas should make purchasers sensitive to variations in services valued by children.

Table of Contents

Chapter 1: Introduction3

Chapter 2: Literature Review8

Chapter 3: Methodology33

Chapter 4: Findings and Discussion42

Chapter 5: Conclusion49

References59

Chapter 1: Introduction

Purpose of the Study

The purpose of this study was to identify the respite care needs, and the impact of a lack of respite care, among families of children with developmental disabilities. A respite care needs assessment survey was completed by 574 Iowan families of children with developmental disabilities. The results documented a void in the availability and accessibility of respite services regardless of demography, income level, or extent of disability. Respondents generally perceived that the availability of respite care services would improve overall family functioning.

Background of the Study

A child with a disability is considered to be a child in need under the Children's Act 1989. The Children Act 1989 is the main legislation that provides the legal framework within which social worker practice with children and families is situated. In this Act the key principles are the welfare of the child, children's rights and parental responsibility. Under section 17 of the act, the local authority has a duty to provide services to these families if needs are identified (Brammer, 2007). There has been an increase in the demand for short break services for families with children with disabilities and the government has introduced Aiming High programme to meet this demand on a temporary measure until the contract runs out in April 2011.

According SCIE (2005), short breaks have positive benefits to children because they have an opportunity to have enjoyable experiences and socialise with others. There are over 400 short breaks in the United Kingdom all aiming to provide a range of short break services of differing lengths depending on the different age and disability of the children.

Over the past decade and a half, a "quiet revolution" (Friesen, 1993, p. 6) in conceptualization and practice has been described in the design and delivery of mental health services for children experiencing severe diability, developmental, or behavioral problems and their families (Rivera & Kutash, 1994). This evolution has been characterized by a more community-based orientation, the full participation of families in every phase of ...