A Practical Guide to Congenital Developmental Disorders and Learning Difficulties

Judith P. Hudson

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781136209499
• Edition: 1
• Topic: Medicina
• Subtopic: Infermieristica

To give children with congenital developmental conditions that manifest special learning needs and specific disabilities their best chance to succeed, early identification and appropriate interventions and support, is necessary.

This text highlights what to look for when there are concerns about a child's development. Practical and accessible, it is divided into three sections:

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• Part 1 looks at the theory and policy context, discussing the social model of disability, the responsibility of health, social care and education services to the child and family and the role of reviews and assessment in recognising developmental disorders.

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• Part 2 provides a reference guide to atypical developmental conditions and disorders. For each condition, aetiology, prominent theories and research, profile of features – including triggers and behaviours, diagnostic assessment procedures and appropriate interventions are given and links made to sources of further information and support.

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• Part 3 explores practical issues how to work sensitively and effectively with children and their families, looking at the psychological implications of diagnosis, and how to plan, promote, deliver and evaluate multi-agency support.

Designed to support professionals working within a multi-modal, collaborative approach to assessment and intervention processes, it is suitable for health visitors, allied health therapists, nurses, teachers and social care practitioners. It is also a useful reference for students in these areas learning about child development and includes critical reading exercises; online searching tasks; self-assessment questions; reflective activities and document analysis prompts.

Part 1

The dynamics of health, special education and disability in the UK

Chapter 1 Effecting social change

Intended learning outcomes

At the end of this chapter you will

• know and understand key statutory and regulatory frameworks and key developments in universal public health and associated education and care services in England;

• understand what philosophies underpin the medical and social models of disability;

• know the legal definition of special educational needs (SEN);

• understand how modelling a social framework can inform about extraneous influences that impact child health and development;

• be aware of the importance of accessing the child's perspective and considering the views of the child in any assessment programme;

• understand how safeguarding and child protection policy and practice are paramount in all services that deal with children and young people; and

• understand the importance and the value of professional ethical codes and essential guidelines.

Key words (defined in the text)

Bioecological, child protection, ecological systems, ethics, nature, nurture, reciprocity, safeguarding, social modelling.

Introduction

In this chapter, I shall first explore the dynamics of the current universal health service in England, and the countries that comprise the United Kingdom; universal services being services available to everyone. The sheer volume of political activity and involvement deems this first chapter heavily weighted towards how the process has been, and is being, implemented. I focus on relevant key legislation and non-statutory guidance from the plethora of politically motivated initiatives that continue to evolve in the first decades of the twenty-first century. These will address key reforms in health, special education, disability and social care from the final decades of the last century through to current ‘evolving’ systems. I have cited systems that have territorial extent in England and Wales, and that have shaped integrated working practices for multidiscipline professionals to effectively deliver frontline services. Next, I shall identify inherent factors that can be observed in the shaping of universal provision of health and well-being services. I describe legally defined models of disability and SEN, then present a favoured model for understanding forces within social systems, the impact of environmental factors on development and introduce the construct of reciprocity (Bronfenbrenner 1979). I shall present techniques through which to gain access to the voice and point of view of the child, or children’s, perspective; safeguarding and child protection that essentially have to be addressed are also discussed. Finally, ethics and ethical codes of conduct and practice are introduced.

Historical perspectives – twenty-first-century key legislation: an overview

A range of legislation policies and services have accumulatively shifted the dynamics of delivered multi-agency early years health, education and social care service. The territorial extent and application of laws cited here apply to England and Wales, but with the majority only applying to England. Similar key statutes can also be found in Northern Ireland and Scotland and a self-teaching exercise in this chapter provides an opportunity to examine the systems model in each UK nation. These ongoing changes address priorities identified by managers, practitioners and experts from across local government, the National Health Service (NHS), social care and special education services. Since the beginning of the new millennium, policy makers have, in continuum, set out the pathway for ongoing reforms, including several models of provision that have been short-lived under shifting political influences. The concept of multi-agency involvement has also taken root in other countries where similar administration systems exist, for example Canada, New Zealand and Australia.

The first notable social intervention initiative highlighted is Sure Start (SS) in 1999, a programme introduced in the UK to tackle deprivation and embrace social inclusion, and is a prominent link in the changes I outline here. NHS policy, initiatives and a raft of politically motivated legislation established practice support tools such as an Integrated Children’s System (ICS) and ContactPoint. Every Child Matters (ECM) (2003) aimed to get coordinated help quickly and through integrated services for children in need from 0–19 years; the Children Act (2004); the National Service Framework for children and young people and maternity services: Change for Children – Every Child Matters in 2004, a ten-year plan, and the Common Assessment Framework (CAF) (DfES 2009) moved the transition along towards a multi-agency model of service provision across professional boundaries. The ECM made a commitment to partnership and a multi-agency framework within the Children’s Services proposals and was the precursor of the CAF. The CAF was developed through regional trials in England between 2005 and 2006, evaluated by the University of East Anglia and, when introduced to the wider population, this offered an applied conceptual framework for working with children in need and their families.

With the emergence of a coalition government in 2010, subtle policy changes evolved and, at a time of international and national economic crises, change was often necessary, and motivated, through reduced financial investment. However, the previous decade had introduced a generic and holistic way for all professionals to follow the same procedure, to gather and record information that consolidated the move towards collaboration across frontline services. It was designed to help practitioners assess needs at a developmentally early stage. The primary objective of both an ICS and the CAF was to provide coordinated professional help, particularly for children with additional needs and their families, and to focus on prevention and early intervention while providing better support to parents and families. Procedurally, it aimed at providing a more efficient use of information, systematically collected by professionals to improve the well-being and safeguarding of children at risk. The procedures within the CAF placed children and young people at the heart of the process. This centrality of the child in all matters concerning them was stimulated by the United Nations Convention on the Rights of the Child (UNCRC) (1989). Part 1, Article 12, states that:

Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

(UNCRC 1989, Article 12)

Other substantive children’s rights include the right to:

• special protection measures and assistance;

• access services such as education and health care;

• develop their personalities, abilities and talents to the fullest potential;

• grow up in an environment of happiness, love and understanding; and

• be informed about, and participate in, achieving their rights in an accessible and active manner.

The voice of the child must be heard and legislation is in place that makes explicit that the wishes and feelings of children are to be given due consideration in matters, or decisions, that concern them. Strategies for consulting children or eliciting the child’s perspective are first introduced later in this chapter and link to themes in this book that include: ethics and safeguarding (Chapter 1), child development and developmental surveillance (Chapter 2); placing the child central to the assessment (Chapter 3); processes in making a diagnosis (Chapters 4 and 5); gaining the perspective of the child with a disorder and psychosocial issues that are a secondary consequence of living with a developmental disorder (Chapter 6); listening and hearing the voices of children (Chapter 7); and working with the parents (Chapter 8). In conclusion, I bring it all together to look at ‘the way forward’ (Chapter 9).

To further improve desired outcomes for all children and young people, policies extending from ECM and CAF include: Youth Matters in 2005, the Children’s Plan in 2007 and the 2020 Children and Young People’s Workforce Strategy in 2008 aimed at promoting priority outcomes given by the ECM and summarized in Table 1.1. In 2007, the Family Nurse Partnership (FNP) programme for young first time mothers was rolled out, and was funded in areas of England with high social and economic deprivation. This initiative, first established in the US as the Nurse Family Partnership (NFP) before being introduced in England, had three fundamental aims: to improve pregnancy outcomes by helping women to improve pre-natal health; to improve child health and development by helping parents provide sensitive and competent care of the child; and to improve the course of parental life by helping parents plan future pregnancies, complete their education and to find work to improve parents’ economic self-sufficiency. The programme provides a schedule of intensively structured home visiting by specially trained nurses, from early pregnancy until the child’s second birthday, and the initiative is underpinned by theories of human ecology, self-e...