Overview of Intellectual Disability across the lifespan ...

Overview of Intellectual Disability across the lifespan;

Autism Spectrum Disorders; Service Development for Child and

Adolescent Psychiatry; Legal Considerations in Child and

Adolescent Psychiatry

Mashudat Bello-Mojeed MBBS, MPH, MSc. CAMH, FCPA, FMCPsych, FWACP

FNPH, Yaba, Lagos

CCAMH, UI, Ibadan

An Outline • Intellectual Disability: Introduction, Definitions,

Classification, Epidemiology, Features, Aetiology, Management

• Autism Spectrum Disorder: Introduction, Classification, Epidemiology, Features, Aetiology, Impairments, Management

• Service Development for CAP: Sustainable and Principle of CAMH Services Development, System of Care frame work, Community CAMH Services Development

• Legal Consideration in CAP: Legal and Child Mental Health Legislation in Nigeria, Convention on the Right of the Child, Legal Considerations

Learning Outcomes : ID • At the end of the lecture, participants will be able

to:

• Understand the concept of intellectual disability (ID) across the life span

• Define, classify and conduct assessment for ID

• Identify the risk factor for and management of ID

•Intellectual Disability

Neurodevelopmental Disorders: ID and ASD

Concept of Neurodevelopmental Disorders: • Early onset

• CNS involvement

• Stable course

• Presents with behaviour problems

• Lifelong

• Disabling and disruptive to family

Intellectual Disability across the life span Introduction

• The use of stigmatising labels for individuals with disabilities such as ID (and ASD): idiots, imbecile, mentally deficient/defective, feeble minded

• Residential placement, custodial and abuse (Mid-1800)

• Advocacy and legislation for normalisation of living state and educational inclusion

• ID occurs across the life span but with variable outcome

• Evolution of terms:

• DSM-IV and ICD-10 = Mental Retardation

• DSM-V = Intellectual Disability

ID: Definitions & Terms

Definition of ID is based on three (3) Criteria:

• Significant limitations in intellectual functioning

• Significant limitations in adaptive functioning expressed in conceptual, social, and practical adaptive skills

• Age of Onset:

– Developmental period,

– before 18 years

ID: Definitions and Terms

• Adaptive functioning: refers to competency in independent and appropriate performance of daily activities/task within a cultural and age group

• Intellectual function: standardized instrument; IQ

• Adaptive behaviour could be viewed using a normal distribution/Gaussian curve

• Significant limitation: approximately 2 Standard Deviations (SD) below the mean of either 1 of the 3 adaptive behaviour: Conceptual, social and practical skills

Figure 1: IQ/Behaviour Distribution

Epidemiology

• Prevalence = 1 – 3 %

• Highest incidence in school age; peaks: 10-14yrs

• Lower rates in older adults

• Males>Females, 1.5:1

• Rates about twice in LMIC compared to HIC

Table1: ID Classifications and Characteristics Mild (IQ: 50-69) Moderate (IQ : 35-49) Severe (IQ: 20-34) Profound (IQ <20)

80% cases 12% cases 3-4% cases 1-2% cases

Communicate Communicate with some support

Limited vocabulary

No language

Learn basic self –help skill/household chores

learn basic skills with some support

May gain self-help skill through with intense support

Lack self-help skill

Academic (Educable): 6 years of formal education, transition issue

Academics: < 3 yrs formal education

Poor

Poor

Unskilled and semi-skilled work with som e support

Unskilled work with supervision (Trainable)

Assisted household chores (Trainable)

Totally dependent,

Brain abnormality in minority

Brain abnormality in majority

Sensory impairment (5-8 times)

Severe physical & neurological disorders

Causes usually unknown Prenatal causes in 30% (Mortality: 2x

Prenatal causes in 55 – 75%

Mortality: 7 -31x than general population

•Aetiology of ID:

a multifactorial construct

Table 2: Aetiology of ID Timing Biological Psychological/

Behavioural Social/Environmental

Prenatal 1. Chromosomal disorders: Downs, Fragile X, Pradder Willi, Klinefelter’s syndromes 2. Metabolic disorders: Inborn errors of metabolism, Phenylketonuria, Hypothyroidism, Tay-Sach’s disease, Mucopolysaccharidosis 3. Cerebral dysgenesis 4. Maternal illness/Infections (TORCH’S) 5. Parental age

1.Parental immaturity 2. Parental smoking 3. Parental alcohol/substance use 4. non-preparedness for parenthood

1.Poverty 2. Maternal

malnutrition 3. Domestic

violence 4.Lack of/poor

access to prenatal care

Perinatal 1. Pregnancy complications 2. Maternal Chronic Medical conditions 3.Prematurity 4. Birth injury 5. Birth asphyxia 6. Septicaemia 7. Jaundice

Absence of parental quality caregiving 2.Abandonment of child

1.Lack/Poor access to pre & perinatal care

2.Lack/Poor medical referral system

Table 2: Aetiology of ID .... Timing

Biological Psychological/Behavioural

Social/environmental

Post natal

1.Traumatic brain injury 2. Malnutrition 3. Meningoencephalitis 4. Seizure Disorders 5. Degenerative disorders Brain infection such as Tuberculosis

1.Child abuse 2. Domestic violence 3. Inadequate safety measures 4. Social deprivation 5. Gross understimulation

1.Lack of adequate stimulation 2. Poverty 3. Institutionalization 4. Chronic lead exposure

Co-morbidity • Psychiatric disorders: 2-3 times increases in ID

– ASD, ADHD, ODD, Conduct Disorder, LD – Anxiety, Depression, Schizophrenia

• Psychiatric symptoms: – Self-injury, aggression, withdrawal, low self-esteem,

dysphoria

• Medical/Neurological disorders: – Seizures 3-18% in mild to moderate ID), Deafness,

ocular abnormalities

• Physical disability: Visual (20-25%, Hearing (10%), Motor/cerebral palsy (30-60% in severe ID), speech and language (80% in severe/profound ID),

• Severity of ID increases risk of co-morbidity

Co-morbidity

“Diagnostic overshadowing”:

• Many psychiatric disorders require the affected individual to self-report intra-psychic experiences

• Limited verbal ability could impact negatively on the identification and diagnosis of psychiatric disorders

• Symptoms of mental health problems are often mistaken as symptoms of ID; an error.

Management: Goals

• Need assessment: Immediate & Long term

• Explore aetiological factor; especially preventable factors

• Choice of Intervention: Biopsychosocial

• Intervention Goals: Symptom/disability improvement, skill acquisition, risk reduction, improved quality of life & support

Management: Assessment

• Entails bio-psychosocial formulation of problems, its severity & necessary support system for functioning

• Comprehensive multifaceted details:

– Comprehensive psychiatric, medical and other history: Good interviewing skill

– Other Assessments: IQ/adaptive function, speech, occupational, educational, social, burden of care-giving

Management: Assessment

• MSE: Appearance, psychomotor behaviour, speech, Affect, reality testing, perception, attention and concentration, Memory etc...

• Physical: Dysmorphic features, hair/skin texture & pigmentation, dermatoglyphics, visual & hearing problems, Thyroid gland size

• Neurological examination: Hypo/hypertonia, hypo/hyperreflexia, clumsiness, rigidity, incordination

Management: Investigations

• Investigations: IQ (Weschler Intelligence Scale for Children- WISC,Stanford Binet Intelligence Scale) audiometry, Speech evaluation, Adaptive behaviour

• Laboratory: Karyotyping, amniocentesis, Urine/blood analysis, Enzyme assay (Galactosemia), Electroencephalogram (EEG) – interpreted with caution in ID (Non specific changes: slow frequencies with burst of spikes and sharp waves complexes), Skull X-rays (Calcification eg TS, Toxoplasmosis, hypoparathyroidism)

Management: Treatment • Treatment/Interventions at 3 levels: • Treatment plan: individual interest/goal-based, focus

on improving individual adaptive skill, independence and overall well-being

• Adopts a dynamic life span approach ---> emphasis on continuous goal revision to meet need throughout life stages

• Addresses multiple facets of life: self-care skills, social skills, educational and all health components (PMS)

• Addresses self determination skill: self awareness, self advocacy, self-efficacy, decision-making, independent performance, self-evaluation and adjustment ---> contribute to ability to attain goals

Interventions: Primary Prevention • Primary prevention: before biological onset

• Goal: maximizes health of mother and baby

• Strategies: Maternal fitness and nutritional promotion. Prenatal:

• Prenatal vitamins, folic acid ---> healthy neural tube development

• Avoid alcohol and illegal substance use

• Genetic counselling

• Vaccination against childhood diseases: Mumpsc, Measles, Rubella ---> brain inflammation & damage

• Environmental health initiatives: Lead removal from paint

• Public education/ Safety initiatives: Car seats, bicycle helmets, seat belt

Interventions: Secondary Prevention

• Identification and halting diseases yet to cause associated signs, symptoms & dysfunction

• Example: Phenylketonuria ---> baby born with inability to properly break down phenylalanine amino acid ---> delayed mental and social development

• Secondary Prevention: PKU screening for all newborns for early treatment

Interventions: Tertiary Prevention

Prevention of disease progression, rehabilitation and reducing sequelae

• Services provision to reduce number, extent and severity of the condition: Specialized preschool services, special education programs

• Behavioural intervention: Parent behaviour management training, behaviour support services, management of challenging and enhancing social/desired behaviour, relaxation training, assertiveness training, problem solving skill, anger management, anxiety management

• Individual and group psychotherapy & Psychodynamic therapy (family)

Interventions: Tertiary Prevention • Educational: Special/inclusive education

• Social Intervention: Peer/family support group, Recreational activities, Respite care, bi-directional referral system

• Vocational training and supervised work placement

• case management services: attaining houses & resources (Food, clothes, money)

• Advocacy group: promotes rights and opportunities

Interventions: Tertiary Prevention

Pharmacological:

• Antipsychotics: Co-morbid psychiatric disorders, other medical conditions, challenging behaviour, stereotypy

• Antidepressants: Depression, anxiety, OCD

• Anticonvulsants: Aggression, seizures

• Lithium:Aggression, self-injury

• Beta-blockers: Aggression, anxiety

• Stimulants: ADHD

Prognosis

• Variable outcome

• Influenced by severity, aetiology & comorbidity

• Prognosis poor with severity and comorbidity & vice versa

• Long term improvement:

– > Adaptive (+) > Intellectual functioning (+/-)

•Autism Spectrum Disorders

Learning Outcomes: ASD • At the end of the lecture, participants will be able

to:

• Discuss the concept of Autism Spectrum Disorder (ASD)

• Define, identify and classify ASD and its variants

• Identify the risk factor for and management of ASD

Introduction • the term “autism” was coined in 1910 by Eugen

Bleuler while defining symptoms of schizophrenia • Leo-Kanner (1943), of John Hopkins Hospital,

described “infantile autism”

• Studied behaviour of 11 children over a period of 5 years. – observed certain behavioural similarities which he

termed “infantile autism”. – descriptive features:

»“autistic aloneness” »“autistic sameness”…….

Introduction……

• In 1944, Hans Asperger described a group of children termed to have traits of “autistic psychopath”

– Observed children with traits similar to that of Kenner's but with a relative sparing of language, cognition & age appropriate skills

– an important variant of autism referred to as “Asperger’s syndrome”

– Aspergers vz High functioning autism

Introduction

• the term “autism” was coined in 1910 by Eugen Bleuler while defining symptoms of schizophrenia

• Leo-Kanner (1943), of John Hopkins Hospital,

described “infantile autism” • Studied behaviour of 11 children over a period of

5 years. – observed certain behavioural similarities which he

termed “infantile autism”. – descriptive features:

»“autistic aloneness” »“autistic sameness”…….

Introduction……

• In 1944, Hans Asperger described a group of children termed to have traits of “autistic psychopath”

– Observed children with traits similar to that of Kanner's but with a relative sparing of language, cognition & age appropriate skills

– an important variant of classical autism referred to as “Asperger’s syndrome”

» high functioning autism

Classifications • ASD: A group of neurodevelopmental disorders

characterise by persistent and qualitative impairment in social communication, social interaction across multiple context and restricted, repetitive pattern of behaviour, interests or activities

• Classifications DSM-V: ASD – Autistic disorder – Asperger’s disorder – ASD Not otherwise specified (NOS)

DSM-IV – Autistic disorder, Asperger’s disorder, Rett’s disorder, Childhood

disintegrative disorder (Heller’s disease), PDD NOS ICD-10 – Childhood Autism, Asperger’s syndrome, Rett’s syndrome,

Atypical Autism, PDD NOS,

,

Epidemiology • Once considered rare

• An upsurge in prevalence

– increased from 0.4 per 1,000 in the 1970’s to the current estimate of up to 11.3 per 1,000 (CDC,2007)

– an estimate of 10 to 20 per 10,000 rate for autistic disorder

– affects boys more than girls, M:F ratio of 4:1

–Referred to as the “Fastest growing disability”

Epidemiology…...

– Although no published data on prevalence of autism in Nigeria……

– 1st case of autism in Nigeria reported by Longe (1976), other cases have been reported

(Bello-Mojeed & Omigbodun et al., 2010; Muideen et al, 2008)

– Studies from Child and Adolescent Centre, Yaba, Lagos, point to an increase in number of affected children (Bello-Mojeed & Omigbodun et al., 2009, 2013; Bakare et al, 2012)

– Is there an actual increase or improved recognition?…..

Aetiology…… • no specific aetiological factor for autism

• propounded theories include:

– Genetics

• the most significant of implicated factors

• a complex aetiological concept

• Mutation of gene suggested; the actual mutation that increase risk for autism unidentified

• higher concordance among MZ twins & risk of autism higher in siblings of the affected than the control

Aetiology……

–Family factors

• Suggestion that autism was a response to abnormal parents

• concept of “refrigerator mother”

–Neurological factors-

• associations with some neurological conditions e.g. tuberous sclerosis, congenital rubella,

Aetiology…… –Biochemical

–neuro-anatomical etc

– Teratogens: Thalidomide, valproic acid, misoprostol

–maternal rubella infection

–Parental age

– Folic acid

–Vitamin D

– ???measles-mumps-rubella (MMR) vaccine

Clinical Features • Onset of features is usually in the developmental

year, often before age 3yrs

• Parents are usually the 1st to observe unusual behaviour in the child

• Late clinical presentation is the rule

• Impairments affect virtually all the areas of functioning, but 3 key areas are mainly affected

– Social interaction

– Social Communication

– Behaviour/Interest/Activities

Impairments…...

• Social interaction

– Slow to smile (baby)

– Avoidance of/poor eye contact

– Lack emotional reciprocity

– Lack non-verbal communication skill

– Difficulty in mixing with peers

– Inappropriate facial expression

– Sustained odd body postures

– lack anticipatory posture

Any difference???......

Autistic aloneness Typical play among children

Impairments…...

• Social Communication

–a delay in or lack of speech development

–About 50% lack speech at age 5yrs

–conversation difficulty

–speech abnormalities e.g echolalia, pronominal reversal, neologism

–act as if deaf

–Odd play/uncooperative play

Impairments…...

Behavioural Behavioural……

resists changes in routines

motor mannerism

preoccupation with an interest that is abnormal in its intensity or focus

extreme distress for no apparent reason

• crying tantrum

• acting aggressively

• apparent insensitivity to pain

• no fear of real danger

• Hyperactivity

Diagnosis • Diagnosis of disorder not made easily

• Diagnosis based on ICD-10 and DSM-IV criteria

– At least 6 criteria with a minimum of 2 core impairments in social interaction (DSM-IV)

• DSM-V: Autism Spectrum Disorder

• a detailed history taking and examination are crucial

• Investigations are essentials to rule out differentials….. IQ, EEG, Genetic screening for eg phenylketonuria, chromosome analysis, CTScan etc

Interventions • Evidence supports effectiveness of interventions

• The goal of treatment is to manage and improve symptoms and functioning

• Treatment mainly involves a team of experts which include:

»Psychiatrist, paediatrician, educational therapist, speech pathologist, nurses, psychologist, social workers, occupational therapist, physiotherapist etc

• Treatment is mainly individualised

Interventions

• Education/explanation

»to parents/family

• Family support

• Educational intervention

– Special education

– Vocational training & placement

– Speech therapy

– Occupational therapy

Interventions.....

• Behavioural therapy

• Individual psychotherapy for high functioning individuals

• Social skills training

• Physiotherapy

Interventions.....

• Pharmacotherapy

–Maladaptive behaviour eg aggressive, self injurious, repetitive, disruptive behaviours

– Sleep disturbances

–Co-existing medical conditions….

»Seizure

»Anxiety

»Depression etc

Conclusions.......

• Autism is a neuro-developmental disorder!........ Not a “demonic” affliction!!!

• It remains a challenging condition but treatable

• Impact negatively on the child and the family

• Reduction in symptoms and improved level of functioning with treatment, especially when identified early

• Early diagnosis & intervention is key! There is a special ability in this lifelong disability!!!.....About 5% = IQ > 100 !!!

system of care

Conclusions

• ASD is a neuro-developmental disorder

• Begins in early childhood, affect CNS

• Increase in number of children being diagnosed

•

• Recognition of early/warning signs is vital

• Early diagnosis important for intervention

• Early intervention is key

•Service Development for Child & Adolescent Psychiatry

Learning Outcomes: CAMHServices

Participants should:

• Understand the principl e of CAMH Services and system of care framework in Child and Adolescent Psychiatry

• Discuss the process of a community Service development for Child and Adolescent Psychiatry

An Outline

• Sustainable CAMH Services Development

• Principle of CAMH Services

• System of Care frame work

• Community CAMH Services Development

• The Optimal Mix of Services Pyramid

• Core Features of CAMH Services

• Planning Community CAMH Services

• Implementing Direct CAMH Services

• Liaison and Intersectoral CAMH Services

Introduction

• NeuroPsychiatric disorders constitute 14% of the Global Burden of Disease (GBD)

• Mental heath problems have onset in children and adolescent

– About 20% of children and Adolescent experience MH problems

– Huge burden associated with MH problem in children and Adolescents

• 4 of 5 individual with MH problem in LMIC do no receive treatment; mostly child population who rarely initiate help/treatment

• Inadequate CAP service – Development of CAP services is a priority

Sustainable CAMH Services Development

• Compared to Low and Middle Income Countries (LMIC), inter-sectoral CAP system of care are found in High Income Countries (HIC)public sector

•

• Within constraints, CAP service development needs system of care prototype to promote and maintain MH of the African child

• Methods:

– Government: Adoption of CAMH Services

– Implementation of CAMH Service by CAMH professionals in their community

Principles of CAMH Services (WHO)

The WHO Comprehensive Mental Health Action Plan (2013-2020) objectives: To

• strengthen effective leadership and governance for CAMH

• provide comprehensive, integrated and responsive mental health and social care services in community-based settings

•

• implement strategies for preventive and promotion in mental health

• strengthen information systems, evidence and research for mental health

Community CAMH Service Development (WHO, Objective 2)

• Community based mental health care

• Integration of mental health care and treatment into general hospitals and primary care

• Continuity of care between providers and levels of the health system

•

• Effective collaboration between formal and informal care providers

• Promotion of self care

System of Care Framework: Areas of need

• Mental Health Services

• Social Services

• Educational Services

• Health Services

• Substance Abuse Services

• Vocational Services

• Recreational Services

• Operational Services

The Optimal Mix of Service Pyramid, (WHO, 2007)

Core features of CAMH Services • Keep children’s mental health facilities

separate from adults

• Offer services as near to home as possible and in child-centered settings

• Critical mass of staff with sufficient specialists to provide leadership, training and supervision

• Multidisciplinary team approach

• Services must be evidence based

• Coordinate across sectors

CAMH Service

Planning Community CAMH services

• Information/ Data: Conduct epidemiological and ethnographic studies

• Need assessment: Needs of children most at risk

• Situational analysis: of agencies/sectors providing CAMH care

• Model selection: Select an effective service model

• Analysis: Analyze service utilisation and barriers to care

• Opinion: Canvass views of stakeholders

• Priorities: Note national and local priorities

• Scientific evidence: Select evidence based interventions

• Evaluation: Build in outcome evaluation

Implementing Direct CAMH Services

• Advertise the service to all stakeholders

• Build in a good waiting list, booking and record keeping system

• Design an appropriate assessment protocol, maintain adequate clinical notes : diagnosis and management plans

• Ensure that allocated space is dedicated and private and suitable for CAMH work

• Build in regular team meetings and case discussions

• Ensure availability of essential medication

Liaison & Inter-sectoral CAMH Services

• Develop paediatric consultation – liaison services especially in areas of high mental health impact e.g. HIV

• Build on existing service links with other sectors e.g. schools, child welfare, juvenile justice NGO’s

• Provide training and education for other professionals and the public

• Reach out to semi – urban and rural areas

•Legal Considerations in Child & Adolescent Psychiatry

Learning Outcomes...

• Participants should:

• Know existing legal and child mental health legislations in Nigeria

• Understand and discuss important legal Considerations in clinical practice, health research and relevant situations in Child and Adolescent Psychiatry

Outline

• Introduction: Legal and Child Mental Health Legislation in Nigeria

• Convention on the Right of the Child

• Legal Considerations:

– Child Right Act and its violation

– Competence

– Consent

– Confidentiality

– Health Research Ethics e.t.c.

Introduction: Legal and Child Mental Health Legislation in Nigeria

• British Colonial Law (1916): Derivation of existing Mental health legislation

• Lunacy Act (1958): enacted in 1958 as the Lunacy Act, CAP 112, Laws of the Federation of Nigeria; outdated

• No Child Mental Health Act! • The Children and Young Persons Act (CYPA, 1943) • Convention of the Rights of the Child (CRC, 1989)

by the United Nations (UN)

• Organization of African Unity (OAU)’s African Charter on the Rights and Welfare of the Child (ACRWC, 1999)

Convention on the Right of the Child (CRC)

• Children and adolescents have to be viewed and treated as human beings with a distinct set of rights and NOT a passive object of care and charity

• These rights are clearly articulated in the Convention on the rights of the child (CRC, 1990)

• 194 states, including Nigeria ratified CRC

• Domesticated as the Child’s Rights Act (2003)

Core Principles of CRC

• Devotion to the best interests of the child in all actions or decisions

• Non-discrimination on account of race, colour, gender, religion

• A right to life, survival and development in all aspects of their lives: physical, emotional, social, cultural

• Respect for the views of the child

Child Rights Act • Child Right: Human rights of a child

• Examples of Child rights; Right to: • Special protection (e.g. violence) and care

• Human identity

• Basic need for food

• Universal basic education

• Health care

• Equal protection of the child’s civil right e.t.c.

• Though, the best interests of the child must be a primary consideration in all actions or decisions, some rights of the child could be curtailed due to legal considerations such as age and mental capacity

Child Rights Act

• Controversies: – 18 years minimum legal age for marriage

– outlawing of street hawking by children

• At present, in Nigeria, 24 of the 36 states have passed and given gubernatorial assent to CRA; children not being care as required because laws not fully implemented

Child Rights Act: Mental Health Implication

• 41 Articles in Part one of the CRA

• 25 have direct implications (promotion, prevention, treatment and rehabilitation)for the development of child and adolescent mental health policy, services, research and training

• Violation is punishable by appropriate fines or sanctions depending on the state

Competence, Consent, Confidentiality Competence • Protective decision ability,

Cognitive ability, Vulnerability

• Age, educational status

• Will, Marriage, Money management, Business transactions, Medical treatment

Confidentiality • giving consent for treatment.

• The ‘legal’ custodian(an adult who has a right to oversee best interest of the child)

• The psychiatrist can act in d best interest of child in an emergency

Consent • Assent from child

• Consent for treatment

• The ‘legal’ custodian(an adult who has a right to oversee best interest of the child)

• The psychiatrist can act in the best interest of child in an emergency

• Overridden Consent: Clinical/scientific meetings, Court supina, coroner’s and medical examiner

Health Research Ethics

• Principles: – Autonomy, Beneficence, Non-maleficence, Justice

• Vulnerability of children in research – Age – dependence – social environment – Disability – basic life skill

• Safety of children in research – Informed consent from parents /guardians – Obtain assent from child – Use safe procedures and equipment – Procedures by competent persons – Ensure confidentiality

References

•IACAPAP E - Textbook Of Child and Adolescent Psychiatry iacapap.org/iacapap-textbook-of-child-and-adolescent-mental-health

• Comprehensive Mental Health Action Plan 2013-2020

• Mental Health and Mental Policy and Service Guidance Packae

• www.unicef.org/wcaro/WCARO_Nigeria_Factsheets_CRA.pdf

• WHO-AIMS Report on Mental Health System in Nigeria www.mindbank.info/item/1303

Thank you… Any Question???...