Gillian Bridge - Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy

Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy — read online for free the complete book (whole text) full work

Below is the text of the book, divided by pages. System saving the place of the last page read, allows you to conveniently read the book "Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy" online for free, without having to search again every time where you left off. Put a bookmark, and you can go to the page where you finished reading at any time.

Light

Font size:

↓

↑

Georgia Tahoma Arial Verdana

Reset

Interval:

↓

↑

Bookmark:

Make

1234567...76

Parents as Care Managers

For Marion Boyd Thomson

First published 1999 by Ashgate Publishing

Reissued 2018 by Routledge

2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN

52 Vanderbilt Avenue, New York, NY 10017

Routledge is an imprint of the Taylor & Francis Group, an informa business

Copyright Gillian Bridge 1999

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.

Notice:

Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.

Publishers Note

The publisher has gone to great lengths to ensure the quality of this reprint but points out that some imperfections in the original copies may be apparent.

Disclaimer

The publisher has made every effort to trace copyright holders and welcomes correspondence from those they have been unable to contact.

A Library of Congress record exists under LC control number: 99072593

ISBN 13: 978-1-138-33527-1 (hbk)

ISBN 13: 978-0-429-44389-3 (ebk)

Flow chart

Source of participants

Local authorities

Interviewees

When diagnosed

Cause of the condition as reported by parent

Type of cerebral palsy as described by parent

Gender of children

Mobility

Ability to sit unaided of those not walking

Ability to feed themselves

Mothers who are graduates

Intellectual impairments/learning difficulties

Continence

Marital status

Mothers who work

Family size

Help from family members

Special person

Health visitors

Physiotherapy

Occupational therapy

Speech therapy (totals)

Speech

Speech therapy (conductive education centre users)

Referrals to CDC

Alternative medicines

Budapest/Pet Institute

Speech therapy (Bobath users)

Bobath

Statementing

Portage

Special education

Boarding school

Respite care

Equipment

Social workers

Family support

ADSS Association of Directors of Social Services

CDT Child Development Clinic

CHV Community Health Visitor

CP Cerebral palsy

DffiS Department for Education and Science

DH Department of Health

DHA District Health Authority

DHSS Department of Health and Social Security

DLA Disabled Living Adviser

EWO Education Welfare Officer

FHSA Family Health Service Authorities

GP General Practitioner

IPSEA Independent Panel on Special Education Advice

LEA Local Education Authority

LMS Local Management of Schools

NCB National Childrens Bureau

NHS National Health Service

OPCS Office of Population and Census Studies

OT Occupational Therapist

SATS Standard Attainment Tests

SBU Special Care Baby Unit

SSD Social Services Department

ST Speech Therapist

UK United Kingdom

This book fulfils my promise to the 58 families who participated in this study that I would tell their stories, although changing their childrens names to ensure anonymity. I am grateful to them for their willingness to share very painful experiences. Sincere thanks are also due to many colleagues at LSE and in particular to Sally Sainsbury, Robert Pinker and Eileen Munro who have read and provided helpful comments on numerous drafts and have sustained me when confidence was low. Michael Bentham did a brilliant job with the tables. Margaret Tamayo proved to be a meticulous editor. As I limped along to the finishing post Julia Shaw provided much needed technical expertise. I am grateful to my family for allowing me to spend so much time doing this work and above all for believing in me.

Caring for disabled children is a subject of current interest. A cascade of change has been initiated by legislation affecting policy and provision for the care of disabled people in the community. The National Health Service and Community Care Act 1990 has introduced new systems for caring for people within their families. The Carers (Recognition and Services) Act 1995 provides a platform for carers (often parents) to have their own needs taken into consideration alongside those of their disabled children when social services departments undertake community care assessments. The Disability Discrimination Act 1995 underlines the entitlement of disabled people to full citizenship.

The plight of families with a child born with cerebral palsy continues to receive considerable press coverage. Headlines such as Doctors clash on the right to live

During the post-war years, social policy has been directed towards transferring the minority of children with disabilities who were still cared for in NHS institutions and boarding schools to those with parental responsibility for them at home in the community. This normalisation process was influenced by Bowlby and reinforced by Wolfensberger.

Utting expresses concern about residential care in a Department of Health review of residential childcare, which endorses the Children Act Guidance and Regulations on residential care.

This study concentrates on the increasing number of disabled children (the Department of Health estimates 98.5%) being cared for at home. The process designed to meet their needs originates in the NHS and Community Care Act 1990, which requires the social services departments to assess the needs of persons who may require community care services, to ensure that people are not fitted into existing services, but that services are adapted to individual needs.

Disabled children meet the criteria for the care management system. It is intended that the two programmes (NHS and Community Care Act and the Children Act), should be consistent and complementary and set a fresh agenda and new challenges for social services authorities for the next decade. There is no intention of creating a division between child care and community services and they should form a coherent whole.

The assumption of primary responsibility for their young disabled child implies that main carers (usually mothers) must make choices from treatments, services and educational facilities to enable their children to live as normal a life as possible. The expectation from the Children Act Guidance is that this process of care management should be achieved by partnership with parents, so that all necessary expertise is marshalled ... within and beyond the SSD .

Provision is to be the responsibility of the NHS, social services, voluntary and private agencies and education departments, who should coordinate packages of services from multiple service providers.

Moreover, the Department of Healths policy guidance on the purchaser/provider model requires active participation by professionals to ensure purchasing a package of care, assembled from the public, voluntary and private sectors, and periodic reviews to ensure a wider choice of services across the statutory and independent sectors, and better integration of services within and between agencies. This description does not fit comfortably with the assertion that in some situations users and carers might act as their own care managers.

Next page

1234567...76

Light

Font size:

↓

↑

Georgia Tahoma Arial Verdana

Reset

Interval:

↓

↑

Bookmark:

Make

Similar books «Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy»

Look at similar books to Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy. We have selected literature similar in name and meaning in the hope of providing readers with more options to find new, interesting, not yet read works.

Elaine Farmer

Effective Working with Neglected Children and their Families: Linking Interventions to Long-term Outcomes

Sally Baldwin

The Costs of Caring: Families with Disabled Children

Hedy Cleaver

Parental Learning Disability and Childrens Needs: Family Experiences and Effective Practice

Caroline Glendinning

A Single Door: Social Work with the Families of Disabled Children

Sonia Sumar

Yoga for the Special Child: A Therapeutic Approach for Infants and Children with Down Syndrome, Cerebral Palsy, Autism Spectrum Disorders and Learning Disabilities

Mary Ryan

The Children Act 1989: Putting It Into Practice

Elizabeth Fernandez

Child Protection and the Care Continuum

Freeman Miller

Cerebral Palsy: A Complete Guide for Caregiving

Joanna Griffin

Day by Day: Emotional Wellbeing in Parents of Disabled Children

Christina Giovannelli Caputo

Library Services to Homeschoolers: A Guide

Cynthia Seymour

Children With Parents in Prison: Child Welfare Policy, Program, and Practice Issues

Roy Porter

Learning Disabilities in Children (Working Together For Children, Young People And Their Families)

Discussion, reviews of the book Parents as Care Managers: The Experiences of Those Caring for Young Children with Cerebral Palsy and just readers' own opinions. Leave your comments, write what you think about the work, its meaning or the main characters. Specify what exactly you liked and what you didn't like, and why you think so.