Intellectual Disabilities: Health and Social Care Across the Lifespan

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