Assessment of Mental Health Problems in Children and Adolescents with Intellectual

Disability

Dr Alison Dunkerley

The Children and Their Families• Be boys• Have poor general health• Been exposed to a greater variety of adverse life events• Brought up by a single parent• Live in poverty• Live in a poorly functioning family• Have mother who is in poorer health• Have mother who has mental health needs• Family less educational attainments/more unemployment• Have fewer friends

Problems of Families

• Coming to terms• Sleep• Insecure attachment patterns – relationships• Appropriate strategies• Cultural attitude to disability• Excluded from mainstream services

Epidemiology

• Emotional & behavioural disorders more common (Rutter et al, 1970)

• Emerson & Hatton, 2007, demonstrated higher rates of social disadvantage & increased risk of all psychiatric disorders

• A third experience MH problems compared with 11%who have only physical disability/ chronic illness & 8% in general population

Risk Factors for MI

• Demographic Factors– Male gender, increasing age, low socio-economic

status, reduced household income, living with one biological parent, living in an institution

• Adaptive Skills– Poor social/daily living/communication skills

• Biological Factors– Decreasing IQ, epilepsy, specific genetic syndrome

Prevalence of MI

• Dekker & Koot (2003), 474 children, 25.1% disruptive behaviour, 21.9% anxiety disorder, 4.4% mood disorder

• Emerson & Hatton (2007), 18,415 children, ‘children with ID accounted for 14% of all British children with a diagnosable psychiatric disorder’, 36% with LD have diagnosable psychiatric disorder

The Children’s Mental Health

• 33 times more likely to have an ASD• 8 times more likely to have ADHD• 6 times more likely to have conduct disorder• 4 times more likely to have emotional disorder• 1.7 times more likely to have depressive

disorder

Common Genetic Disorders

• Prader-Willi syndrome – mood lability, sleep• Williams syndrome – superficial language• Fragile X syndrome – aggression, anxiety• Rett syndrome – hyperventilation, anxiety• Down syndrome – humorous, behaviour• Foetal Alcohol syndrome – executive function• Velo-cardio-facial syndrome – psychosis

History Taking

• Information collected from different sources• Onset of behaviour ? Related to ppt events• Elicit details to support (or refute) diagnosis• Family history – Ld, epilepsy, psychiatric dx• Developmental history – birth, milestones• Personal history – housing, education, EHCP• Risk & forensic history – self & others

Mental State Examination

• Child-friendly setting with toys, books etc• School visits are important– level of support, number in class, ability

• Enquire about emotionally neutral topics• Sufficient time allowed, longer to understand• Observe child – Distractible, poor attention span, impulsivity– Impaired social communication, hypersociability

Standarised Assessment

• WISC-IV generates profile of performance• ADI-R is structured interview for carers• ADOS is play-based, DISCO, 3Di, CARS• ABC (Aberrant Behaviour Checklist)• BPI (Behaviour Problems Inventory)• DBC (Developmental Behaviour Checklist)

SALT & OT assessment

• Part of general delay or particular condition• Interactions with behaviour, social skills etc• Pragmatic skills, semantics, syntax, speech• Atypical sensory processing to self-stimulate• Tactile sensitivity/poor tactile discrimination• Difficulties generating strategies for learning

Family, School & Social

• Impact on siblings is important to assess• Stress on carers may adversely effect child• Processes by which families come to terms• Significant life experiences – medical, trauma• Parental support groups and Contact a Family• Attendance at school helps child meet people• Appropriate to needs of child

CAUSES OF MENTAL ILLNESS:-1) Biological2) Psychological3) Social

Biological Aetiology

• Genetic• Epilepsy• Sensory Impairment• Prescribed Medication• Communication skills• Autism

Psychological Aetiology

• Family dynamics• Low self-esteem• Limited range of coping behaviours• Consistent parenting• Exploitation/neglect/abuse• Bullying/harrassment

Social Aetiology

• Ability to live independently• Limited choices/opportunities• Problems accessing transport• Limited social networks• Broken relationships• Sexuality

ADHD

• Movement partly dependent on environment • Most common association is with conduct• ID, ASD & ADHD often co-exist together• Make allowance for developmental level• Stimulant medication reduces symptoms • Short half-life and duration of action• Appetite suppression can be a problem• Attempts can be made to stop when stable

Behavioural Problems

• Aggression, property destruction, deceit• Commonly occur with other conditions• Adolescence – truancy, stealing, fire-setting• Long-term problems in adult life• Lower income households, lone parents• Aggression main reason for residential care• Contact with CJS

NICE Challenging Behaviour

• RCPsych defn (2007):-– ‘Behaviour of such an intensity, frequency or

duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion.’

• Work with person & carers• Understand function of behaviour• Work in least restrictive way possible

General Principles of Care

• Clear focus on person, family & carers• Interventions delivered in least restrictive setting• Prompt & co-ordinated access to specialist services• Staff training in strategies to reduce risk & manage

behaviour• Recognise impact on family/carers & consider

support/groups etc• Strategies for early identification• Annual physical health checks

Challenging Behaviour

Exclusion, harm to self, harm to others

Pain

Other people’s behaviour

Biological – sensory/physical health/genetic

Psychosocial – life events, communication, social networks, meaningful activity, psychiatric

VulnerabilitiesMaintaining Processes

Impact

Assessment of Challenging Behaviour

• Person-centred with focus on outcomes & improving quality of life (resilience/resources)

• Regular review of self-harm/harm to others/ breakdown of family/abuse/escalation

• Functional assessment varied in complexity & intensity in line with behaviour that challenge

• Initial screening using MH assessment tools if MH problem might underlie behaviour

Interventions for Ch. Behaviour

• Parent training programmes for under 12yo• Functional assessment of behaviour• Antipsychotic drugs only in combination with

other interventions & only if– Psychological interventions don’t produce change– Treatment for coexisting problems not reduced

behaviour– Risk to person or others is severe

Positive Behaviour Support

• applied behaviour analysis• the normalisation/inclusion movement• person-centred values. • Integrates a comprehensive lifestyle change, a

lifespan perspective, ecological validity, stakeholder participation, social validity, systems change, multi-component intervention, emphasis on prevention, flexibility in scientific practices and multiple theoretical perspectives

Key Components of PBS (Gore et al)Values Prevention and reduction of challenging behaviour occurs within the context of

increased quality of life, inclusion, participation, and the defence and support of valued social roles

Constructional approaches to intervention design build stakeholder skills and opportunities and eschew aversive and restrictive practices

Stakeholder participation informs, implements and validates assessment and intervention practices

Theory and Evidence-base

An understanding that challenging behaviour develops to serve important functions for people

The primary use of applied behaviour analysis to assess and support behaviour change

The secondary use of other complementary, evidence-based approaches to support behaviour change at multiple levels of a system

Process A data-driven approach to decision making at every stage

Functional assessment to inform function-based intervention

Multicomponent interventions to change behaviour (proactively) and manage behaviour (reactively)

Implementation support, monitoring and evaluation of interventions over the long term

Reading on Challenging Behaviour

• Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenge; NICE guidelines [NG11]

• Emerson E, Bromley J. The form and function of challenging behaviours. Journal of Intellectual Disability Research. 1995;39:388-98.

Aggressive Behaviour

• Treatment of underlying cause, environment• Antipsychotics used for many years• Risperidone has largest amount of evidence• Low-dosages associated with low risk of side-

effects• Aripiprazole used if weight gain – efficacious• Informed consent from carers

Self-injurious Behaviour

• Predisposing, precipitating, maintaining factor• Adequate treatment of comorbid conditions• Treatment targets should be realistic• Historically, antipsychotic drugs widely used• Risperidone can be tried• SSRIs can be used esp if depression/anxiety• Naltrexone trial justified in severe cases

Anxiety Disorders

• Anxiety disorders in 10-12% of C&A with ID• GAD, phobia and sepn anxiety more common• Generally do not require psychopharmacology• Antidepressants, anxiolytics, antipsychotics • US FDA review suggests small risk of suicide• Most side-effects usually resolve in weeks• Administer CBT & sertraline to C&A with OCD• Additional studies needed in YP with ASD

Depression

Criteria for diagnosis?

Depressed moodDecreased interest/pleasureDecrease/increase appetite/weight lossInsomnia/hypersomniaPsychomotor activity/retardationFatigueWorthlessness/inappropriate guiltDecreased concentration/inability to thinkThoughts of death/suicidal ideation

How might these symptoms present in person withlearning disability?

Observed mood e.g. Apathetic facial expression with lack of emotional reactivity

WithdrawalChange in total sleep timeAgitation may present as self-injurious behaviour or

aggressionDecreased energy/passivityStatements such as ‘I’m no use’Change in performancePerseveration on the deaths of family members or

friends, pre-occupation with funerals

Mood Disorders

• Medication can be beneficial • SSRIs have most desirable SE profile• Treat for 6-12months to prevent relapses• Bipolar disorder under recognised in LD (adult

literature)• Anticonvulsants alternative to lithium• BMI, FBC, LFTs before starting Na Valproate• U&Es, TFTs, FBC before commencing lithium

Tics

• Tics common in young people with ID• Involuntary tics or stereotyped behaviour• Associated with OCD & hyperactivity• Interference with daily functioning, pain• Occasionally individuals benefit from clonidine• Antipsychotics most commonly used• Mph & clonidine effective for ADHD with tics

Schizophrenia & other Psychoses

• Auditory hallucinations, delusions, withdrawal• Difficult to diagnose in severe ID• Based on information from carers & observatn• Important differential is ‘self-talk’ seen in ID• Increase in soft neurological signs & epilepsy• Good therapeutic responses to antipsychotics• Risk of extrapyramidal symptoms & TD• Hyperprolactinaemia: amenorrhoea, hirsutism• Weight gain is greater in C&A than in adults• Metabolic syndrome – dyslipidaemia, glucose

Autism

• Common in ID affecting up to 50% of YP• May be difficult to diagnose in severe ID• Comprehensive medical work-up required• Difficulties describing emotions/symptoms• Increase in maladaptive behaviours• Depression & anxiety common in older

adolescence/adults

Sleep Disorders

• Common in children with learning disabilities• Sleep hygiene measures, bedtime routines• Melatonin is useful to promote sleep• Rectification of sleep-wake cycle interference• Melatonin given 30mins before bedtime• Duration of treatment is variable

Pharmacological Interventions

• Often don’t meet formal diagnostic criteria• Focus on observable behaviours/activity• Used in combination with other approaches• Rates of response poorer, frequent S-es• Close monitoring, demonstrable benefits• Extrapolation from the generic evidence-base• Off-license prescribing (Medicines Act, 1968)

Psychological Interventions

• Adapting standard, evidence-based approach• Parents/teachers expectations/support • Carers are co-therapists to generalise• Evidence-base for C&YP with LD limited• Carer’s emotional & social circumstances• YP’s emotional & intellectual development• Adopt a stance that avoids blame of parents

Psychological Approaches

• Helping parents/YP understand their diagnosis• Inability to come to terms with disability• Minimisation by parent can provokes

protection by other• Supervision appropriate to chronological age• Origin of parent’s beliefs/patterns of response• Accept need to change thinking/behaviour• See each other in constructive light

Teach Skills

• Emotional literacy/social skills/relationships• Individual/group level, with/without autism• Direct instruction/modelling/coaching• Role-play to practice strategies may be useful• Sexual exploration in adolescence• Awareness of consent• Make implicit social rules explicit

Behavioural Approaches

• Physical/verbal aggression, oppositionality etc• Mild/moderate/severe/profound LD• Group interventions aiming to train parents• Generic or modified interventions• Techniques such as selective ignoring, praise• Individual approach based on FA of behaviours• Constructional, functional & socially valid

Preventative Interventions

• Improving sleep patterns • Use graded exposure to improve coping ability• Introduce a structured activity schedule• Increase level of preferred activities• Increase interaction non-contingent to

behaviour• Teach independent living skills e.g. make drink• Modify level of stimulation in environment

Functional Communication Training

• Teach PECS, Makaton etc• Introduce flashcards - allow someone to leave• Introduce technology to aid requests• Safe objects to chew to replace other items• Alternative ways to meet sensory needs• Manipulate reinforcement contingencies– Eliminate behaviour & acceptable alternative

Cognitive Behavioural Approaches

• Shorter sessions & repeat information• Use follow-up probes to clarify understanding• Make abstract concepts more concrete• Suggest possibilities if YP struggles to generate• Make use of visual cues e.g. traffic lights• Visually record sessions so YP can review• Involve parents in homework

Autism Specific Approaches

• Aim to remediate core communication (ABA)• Starts before 3yo & 40hrs home-based ix– Wide range of results & difficulty replicating

• Less intensive interventions target specific skills• Social stories (Gray, 1995) teach responses– Case studies support effectiveness

• Research remains scarce• Draw on skills in generic CAMHS

Transition & Social Networks

• Difficulties in smooth transitions to adult life• Limited opportunities & choices offered • Lack of suitable provision for young people• Lack of YP & family’s input in planning process• Lack of m-a working to support transition• Gulf between child & adult services in health• Timing of preparation for transition

Service Models

• Development of Specialist CAMHS for LD• Increased propensity to develop MH problems• MH support for children with LD differs• Inclusion agenda – all able to access facilities• MH needs of YP: Count Us In (2002)– Referred to range of services (CAMHS, specialist)

• Person-centred planning & circles of support

Which professionals (or what skills may be needed) may play a role in a mental health assessment?

Psychiatrist – history, mental state, diagnosis

Psychologist- neuropyschological testing, behavioural analysis

Social Worker- living arrangements, activities, education, finances, vulnerability issues

Nurses/MHPs- gather information, different roles Occupational Therapist- everyday functioning, skills and

abilities, co-ordination, sensory profile

Speech and Language Therapist- assesscommunication skills

Multidisciplinary Assessment

• Biological, psychological, educational, developmental and social perspectives

• Succinct yet informative formulation• Alternative explanations• Predisposing, precipitating & perpetuating• Profile of useful, cost-effective & evidence-

based biopsychosocial interventions

Multi-agency Working

• Different professional cultures• Inappropriate expectations• Learning from different skills & perspectives• Complementing each other’s practice• Joining up packages of care & support

Policy Context

• Winterbourne View (DoH, 2012)• Challenging Behaviour & LD (NICE, 2015)• Paving The Way (CBF, 2015)• Aiming High for Disabled Children (DfES, 2007)• Transition: Moving on well (DoH, 2008)• Healthy Lives, Brighter Futures (DoH, 2009)• CAMHS Review (DoH, 2010)

Features of a Good Service

• Holistic. Emotional, physical, social etc• Child-centred planning. • Developmental framework. • Multi-agency commissioning. Health/social• Inclusion & equality of access. • Proactive & problem-solving. Work flexibly.• Collaborative practice & consent. Feedback.

Views of Children & Families

• Take into account cultural/ethnic backgrounds• Having a single referral route• Time to listen to YP & provide opportunities• Support for families & carers • Practicalities e.g. where services situated• Different philosophies of child & adult services• Several gaps in provision – inpatient/outreach

In-patient Facilities

• Assessment/diagnosis/treatment • Outreach work can shorten/eliminate

admission• Close liaison between in-patient/local teams• Clear, integrated pathway of care incl.

discharge• Hard to achieve if geographically distant

Changing Organisational Contexts

• Absence of sufficient capability and capacity in systems to support people with challenging behaviour has been shown to be a key organisational determinant of family/service breakdown and subsequent out of area placement (Goodman et al, 2006; Phillips and Rose, 2010)

• Carr et al’s (1999) meta-analysis of PBS interventions found that the success rate associated with natural carers was higher than that obtained by external intervention agents and that interventions conducted in natural settings were as effective as those in more controlled ones.

Safeguarding Children

• Nature of LD may present additional needs• Children Act says consider in relation to needs• Prof differences should not obscure focus• 13% ‘children in need’ due to disability

Abuse & Disabled Children

• May be more socially isolated in community• Targeted by sexual predators because access• More dependent on parents/carers• More vulnerable to bullying – ‘different’• Living in situation assoc with poor outcomes• Professionals lack knowledge about LD• Over-identify with parents/carers

Mental Health Act

• LD & no other form of mental disorder: may not be detained unless accompanied by abnormally aggressive or seriously irresponsible conduct

• Possible for ASD without mental disorder or behaviour (unlikely)

• LD defn:- ‘a state of arrested or incomplete development of the mind which includes significant impairment of intelligence & social functioning’

Use of MHA

• Capacity to agree to admission?• Parent can consent to admission, under 16yo• Lack capacity, admitted in ‘best interests’ and

not Deprivation of Liberty (use MHA under 18)• Risk to patient or public • History of non-compliance with treatment• Consent/capacity fluctuating

Mental Capacity Act

• Is there an impairment of mind/brain?• Does impairment mean person unable to

make decision?• What decision they need to make and why• Consequences of making (or not) decision• Understand, retain, use & weigh up relevant

info• Communicate decision

Equality Act & Reasonable Adjustments

• Communication support• Information in an accessible format• Sufficient time for preparation before meeting• Adapted treatment programmes• Adapted therapeutic environment• Risk assessment of personal safety• Prioritised access/involvement of carers

Equality Act

• Difficulty managing queueing, arrange different meal times

• Reduced ability/confidence, access activities which are on ‘first come first served’ basis