Intellectual Disabilities: Health and Social Care Across the Lifespan

Description:

This textbook provides nurses, allied health and social care professionals with the background knowledge necessary to support individuals with intellectual disabilities and their families. It is a unique and viable resource which is particularly timely, as recent decades have seen a significant change in the demographics and associated care and support needs of this population.

The textbook is laid into four sections to provide a logical structure for the content with chapters developing key topic areas relevant to the field.

The introductory section sets the overall context for the book and considers the importance of developing an understanding of intellectual disability as a core concept identifying philosophies and models of service that underpin health and social care across the lifespan. Communication as a basis for caring and the overall concept of person-centred caring in a multidisciplinary context is considered. The second section explores key concepts from birth to adulthood exploring the nature of intellectual disability, the child with intellectual disability and other related neurodevelopmental conditions. The third section explores adulthood to older age and considers specific health care needs, understanding behaviour and other fundamental concepts including mental health, ageing and palliative care. The fourth and final section explores the integration of health and social care addressing such issues as supporting and enabling families, education, employment, and sexuality and relationships.

Edited by experienced and widely respected professionals, this textbook is written by international practitioners, educators and researchers who all play critical roles in working with individuals with intellectual disability and their families.

Table of contents :

Introduction
Part I: Introduction to Key Concepts
Part II: From Birth to Adolescence
Part III: From Adulthood to Older Age
Part IV: Integrating Health and Social Perspectives
Contents
Part I: Introduction to Key Concepts
1: Foundations of Intellectual Disability
Introduction
Current Definitions and Terminology
Historical Understandings of Intellectual Disability
Cross-Cultural Understandings of Intellectual Disability
Models of Service, Care and Support
Institutional and Congregate Settings
Changing Philosophies
Development of Inclusive, Community-Based Supports
Changes Across the Lifespan
Conclusions
References
2: Communication as a Basis for Person-Centred Support
Introduction
The Right to Communicate
Communication, Culture and Person Centredness
Interpersonal Communication for Person-Centred Care
Skilled and Reflexive Advocates Facilitating Person-Centred Care
Reflexivity/Self-Awareness
Respect
Patience and Time
Active Listening
Advocacy
Conclusion
References
3: Care and Support in a Multi/Interdisciplinary Context
Introduction
What Is and What Is the Purpose of Multi- and Interdisciplinarity?
Why Should Service Provision for People with Intellectual Disability Be Interdisciplinary?
Australian Case
Context
Policy
Models of Integrated Care
Education and Curriculum
Funding
Norwegian Case
Context
Funding
Policy
Models of Integrated Care
Education and Curriculum
Case Comparison of Collaborative Working in Two Jurisdictions
Involvement of the Voices of People with Intellectual Disability in Service Planning and Development
Conclusion
References
4: Attachment, Cognitive Dissonance and Reciprocation in Intellectual Disability Care Provision
Introduction
Attachment: Emotional Connection and Learning
Attachment Theory in humans
Application of Attachment Theory in Intellectual Disability
Implications for the Intellectual Disability Support Worker
Consistency/Dissonance Processing: Cognitive Dissonance Theory
Cognitive Dissonance Theory
Application of Dissonance Theory in Intellectual Disabilities
Implications for the Intellectual Disability Support Worker
Reciprocity: No Community Without Reciprocity
Reciprocity and Cheater Detection
Application of the Reciprocity Principle in Intellectual Disability
Implications for the Intellectual Disability Support Worker
Conclusion
References
Part II: From Birth to Adolescence
5: Nature of Intellectual Disability
Overview of the Prevalence of Intellectual Disabilities
Prenatal, Perinatal and Postnatal Diagnosis of an Intellectual Disability
Genetic Diagnosis of an Intellectual Disability
Overview to Genetic Screening and Genetic Testing
Sharing of a Diagnosis of a Child’s Intellectual Disability
Implications of a Diagnosis of Intellectual Disabilities and Genetic Conditions
Overview of the Common Conditions Associated with Intellectual Disabilities
Pitt-Hopkins Syndrome
Fragile X Syndrome (FXS)
Williams Syndrome (WS)
Tuberous Sclerosis Complex (TSC)
Rett Syndrome (RTT)
Cornelia de Lange Syndrome (CdLS)
Foetal Alcohol Spectrum Disorder (FASD)
Prevention of an Intellectual Disability
Preventive Health Measures: Maternal Infections
Preventive Health Measures: Alcohol Consumption
Best Practice Guidance to Disclosure of a Diagnosis
Conclusion
References
6: Children and Adolescents with Intellectual Disability
Introduction
Prevalence of Intellectual Disability in the Child Population
Presentation of Intellectual Disability in Children
Supporting the Child with Intellectual Disabilities and Their Family
Health Supports
Early Intervention
Early Intervention and Education Inclusion
School-Aged Children and Inclusion
Challenges to Educational Inclusion
Conclusion
References
7: Intellectual and Developmental Disabilities and Rare Diseases
Introduction
General Aspects of Intellectual Disability and Rare Disorders
Defining Intellectual and Developmental Disabilities
Defining Rare Diseases/Disorders
Prevalence of Rare Diseases
Aetiological Classifications
Classification of Rare Diseases
Classification of Intellectual and Developmental Disabilities
Inborn Error of Metabolism (IEM)
Diagnosis of Rare Disorders
Clinical Presentations
Therapies for Inborn Error of Metabolism (IEM)
Impact of Rare Metabolic Diseases Across the Lifespan
The Implications for an Informal Carer and the Professional Focus
Conclusion
References
8: Other Related Neurodevelopmental Conditions
Introduction
Exploring Down Syndrome
Cause of Down Syndrome
Prevalence Rates
Diagnosis of Down Syndrome
Features and Health Conditions of Children and Adults with Down Syndrome
Management of Health Conditions Associated with Down Syndrome
Quality of Life and Down Syndrome
Exploring Cerebral Palsy
Causes of Cerebral Palsy
Prevalence of Cerebral Palsy
Assessment of Cerebral Palsy
Quality of Life (QoL)
Exploring Autism Spectrum Disorder (ASD)
Signs, Symptoms and General Diagnostic Issues
Screening Tools and Standardised Diagnostic Instruments
Sensory Processing Issues in ASD
Co-occurring Psychiatric Conditions in ASD
Management of ASD
Quality of Life (QoL) in ASD
Conclusion
References
Part III: From Adulthood to Older Age
9: Chronic Health Among Those with an Intellectual Disability
Introduction
Chronic Health Conditions
Epilepsy
Musculoskeletal Health and Osteoporosis
Cardiovascular Disease
Respiratory Disease
Gastrointestinal Disease
Sensory Impairment
Contributing Factors to Poor Health Outcomes
Physical Activity and Fitness
Nutrition
Polypharmacy
What Can Be Done to Improve Health Among Those with Intellectual Disability?
Working Towards a Healthier Lifestyle
Conclusion
References
10: Ageing and Intellectual Disability
Introduction
Ageing with Disadvantages
Premature Ageing
Ageing: The Impact on Physical and Mental Health
Approaches to Care in Ageing
Relationship-Based Care
Advance Care Planning
Social Networks and Supports
Family Caregiving
Ageing in the Community as Opposed to Ageing in Community-Based Services
Self-Determination
Palliative Care and End of Life
Conclusion
References
11: Intellectual Disability, Mental Health and Mental Disorders
Introduction
The Concept of Mental Health and Quality of Life for People with Intellectual Disability and Its Relationship with Mental Disorders and Problem Behaviours
Prevalence of and Vulnerability to Mental Disorders in People with Intellectual Disabilities
Differentiating Between Mental Health Disorders and Challenging Behaviours
Classification and Diagnosis of Mental Health Disorders in the Person with Intellectual Disability
Use of Assessment and Screening Instruments
Challenges in Identifying and Diagnosing Mental Health Issues in the Person with Intellectual Disability
Diagnostic Overshadowing
Mental Health Service Provision
Accessing Mental Health Services: Barriers and Enablers
Models of Service
Recovery-Orientated Approach to Practice
Key Concepts Underpinning the Recovery Approach
Composition of Mental Health Intellectual Disability Teams
Mental Health Disorders Common in the People with Intellectual Disability
Depression
Factors Associated with Depression in the Person with Intellectual Disability
Presentation of Depression
Diagnosis
Therapeutic Interventions
Psychological Interventions
Pharmacological Interventions
Anxiety Disorder
Factors Associated with Anxiety Disorder in the Person with Intellectual Disability
Presentation of Anxiety Disorder
Diagnosis
Therapeutic Interventions
Psychological Interventions
Pharmacological Interventions
Attention-Deficit/Hyperactivity Disorder
Aetiology of ADHD
Presentation
Diagnosis
Managing ADHD
Psychoeducation
Pharmacological Treatments
Behavioural and Psychological Interventions
Conclusion
References
Part IV: Integrating Health and Social Perspectives
12: The Social Contract of Care for People with an Intellectual Disability
Introduction
The Social Contract for Care
Demographic Shifts and Care Capacity Within the Family
Social Policies of Deinstitutionalisation and Its Impact on Family-Based Care for People with Intellectual Disability
The Changing Nature of the Social Contract for Care: Ireland as a Case Study
Discussion
Conclusion
References
13: Enabling Families to Support Adults with an Intellectual Disability to Live a Life of Their Choosing
Introduction
Theoretical Context
Family
Caregiving
The Life Course
Living with Family: Policy and Background
Types of Supports
Day Activity
Respite
Home Help/Home Care/Domiciliary Care
The Role of Family in Supporting Decision-Making
Family in Models of Self-Determination and Policy
Research Evidence of Family Supporting Self-Determination
The Role of Family in Supporting Positive Ageing
Future Care Planning
Conclusions
References
14: Social Integration and Inclusion
Introduction
United States
One State’s Systems Change Efforts
Establishing a Preservice Training Program
Brazil
Teacher Training to Support Postsecondary Education for Young People and Adults with Intellectual Disabilities
Australia
Systemic Advocacy Led by People with Intellectual Disability
Recommendations
References
15: Supporting Transitions
Introduction
Defining Transitions
Transitions Theory
Transitions and Policy Initiatives
Transitions and People with Intellectual Disabilities
Facilitating Effective Transitions
Researching the Experience of Health Transitions in Scotland
The Transition Experience of Families
A Deep Sense of Loss
An Overwhelming Process
Parents Making Transitions Happen
A Shock to the Adult Healthcare System
The Unbearable Pressure
Identifying Best Practices
Principle 1: Strategic Level Focus
Principle 2: Clear Transition Processes and Pathways
Principle 3: Proactive Transition Preparation
Principle 4: Multiagency Transition Planning
Principle 5: Continuity of Care in Adult Services
Recommendations for Transitions
Conclusion
References
16: Sexuality, Gender Identity and Relationships
Introduction
Background
Key Terms in Relation to Relationships and Sexuality
The Importance of Relationships and Sexuality to Adults and Young People with Intellectual Disabilities
Diversity of Sexual Identity
Women with Intellectual Disabilities
Men with Intellectual Disabilities
LGBTQ People with Intellectual Disabilities
Binary Understandings of Gender
Challenges for Societal and Service Responses
Exemplars of Best Practice and Approaches
Conclusion
References