IHC Start Strong Seminar: Early and Sustained Support for Children with a Disability

23 March 2010

Andrew MarshallDevelopmental Paediatrician

Puketiro Child Development Team

Overview• Introduction

• Early Correct Diagnosis– Barriers to Early Diagnosis

– Proposed Solutions

• Early Supports currently available;– Barriers preventing supports

being• High quality

• Timely, frequent and sustained

• Integrated/coordinated

• Family-centred

– Proposed Solutions

Introduction – My Personal Perspective

• Developmental Paediatrician at Child Development Team

• Part of CCDHB• Work in a team

– Administration staff– Management– Occupational Therapists– Developmental Paediatricians– Physiotherapists– Psychologists– Speech Language Therapists– Social Worker– VNDTs (Visiting

Neurodevelopmental Therapists)

• We see children referred by a health professional, who have a developmental problem, or are at risk of developmental problems

• Global Developmental Disability/Intellectual Disability

• Autism/Asperger syndrome• Cerebral Palsy• Developmental Syndromes• Acquired Brain Injury• Behavioural or emotional or

physical health problems in a child with a disability

• Disability due to neglect/abuse

Early Diagnosis - Why is it important?

• Most (85%) of a baby's

brain development

occurs after the birth

- in the first 3 years   • Child’s experiences

during these years that

enable brain to grow.• Relationally-rich experiences provide children with the

'brain-food' they need to grow into happy, secure and well functioning adults

Early Diagnosis – Why is it

important?

• A child’s developmental course is determined genetically, in combination with their environment

• Children are “wired” to learn, and will do so unless in a deprived environment

• Evidence that Early Educational Intervention improves long-term outcome

Pharmacological Management• Risperidone (aggressive, disturbed, anxious behaviour)• SSRI (obsessive compulsive, anxious behaviour)• Stimulants (hyperactive, short attention span)• Atomoxetine/Clonidine (mixed profile)• Melatonin (sleep)• Omega 3 (general brain enhancement?)• Muscle relaxants (Baclofen)• Botulinum Toxin• Anticonvulsants• Nutritional support

Early Correct Diagnosis - Trends

Behaviour

Cognition

• Improving knowledge in Early Childhood Professionals (i.e. Plunket, Preschool Teachers) of normal developmental and of developmental disabilities → earlier recognition and referral

• Better accessible information sources (internet)

• Smaller, later families and reduced care giving networks may have decreased parent knowledge

Overlapping Neuromaturational Delays

Early Correct Diagnosis• Parental concerns about their child’s development need

recognition/validation• Early intervention does not require a diagnosis• However, a diagnosis serves as a “short-hand” to direct

the most appropriate action at the best time• A correct diagnosis empowers by enabling

understanding of needs and what the future may hold. It defines both strengths and difficulties

• Beware the dangers of a diagnosis – restricting future possibilities

• Accurate diagnosis must be timely, high quality and collaborative

Early Correct Diagnosis• Barriers to Early Diagnosis

– Socio-economic• Family stress• Transport difficulties• Priorities

– Cultural• Acceptance both positive

and negative• Resistance to formal assessment

measures within Education– Personal

• Denial as a manifestation of grief• Lack of knowledge of normal

versus abnormal developmental paths

– Professional• Specialist vs. generalist• Expertise vs. flexibility and

access

• Solutions– Improved targeted

financial assistance– Wealth shift– Mentor/Model/Guide– Education– Whanau/Community– Change in policy

(Special Education Review currently)

– Managed Clinical Networks / NHB?

Early Supports:Remember the Social Model of Disability

NO PROBLEM

PROBLEM

GENESENVIRONMENT

An impairment is only disabling if the environment is not adapted to it

Early Supports

• Goal of Support and Management of Disability:– Treat or minimise impairment

and maximise potential

– Change environment so it is more enabling not disabling

– Prevent complications of disability

– Support family / whanau in providing care for disabled child and themselves.

Early Supports currently available:

• Government financial assistance (WINZ)

• Government Agencies (funded by MoE/MoH/MSD)

• Contracted Charity Organisations

• Private Providers

Government financial assistance (WINZ)

• Child Disability Allowance

• Disability Allowance (Low Income)

• DPB-CSI (Domestic Purposes Benefit – Carer of Sick or Infirm)

• Community Services Card

Government Agencies (funded by MoE/MoH/MSD)

• District Health Board– Inpatient and outpatient medical, mental health and therapy provision

• Free but wait-listed for some services– NASC (Capital Support in CCDHB)

• Home Help and Respite Care – must have intellectual disability or severe physical disability

• Other MoH Services– Tautoko Services

• Behaviour management assessment, support and advice for children and adults with intellectual disability or autism

– Enable• Equipment and Housing Modifications

– PHO’s / GPs• Family doctor plus some social work and other roles

• Child Youth and Family Service• ACC

Educational ServicesGroup Special Education• Special Education Grant

• RTLBs

• Supplementary Learning Support

• ORRS

• Severe Behaviour

• Communication

• High Health Needs

• Moderate Physical Needs

Fund-holding and Special Schools

Educational Strategies• Focus on quality of learning not quantity, enjoyment, and

participation • Highly structured and predictable classroom routines• Individualised programme• Recognise fatigue (headaches /irritability) from

concentrating twice as hard as average kids• Reduce instruction length and reinforce verbal instruction

visually (and vice versa) and give child time for response• Organise complex tasks into simple steps and prompt• Reduce distraction (sit at front next to studious kids)• Encourage/reward achievement• Allow self-regulation for stress (time-out area, run around,

squeeze a ball)

Contracted Charity Organisations / NGOs

• Disorder Specific– Autism NZ, IHC, CCS, BLENZ,

• Service Specific– Wellington City Mission /Sisters of

Compassion – Plunket– WEIT/Conductive Education– RDA

Private Providers

• Private Therapists

• Tutoring agencies (SPELD etc) – Assessment and targeted therapy for Specific

Learning Disabilities

• ABA

• Biomedical

• Alternative

Other issues• Transition to Adult

Services– Lack of services and

supports

• Child Protection– Poor information-

sharing– Difficulties

recognising emotional vs. physical neglect

– Can present with signs of a neuromaturational disorder

Goals – Early and Sustained Support • High quality – “evidence-based”• Appropriately and securely funded• Timely, frequent and sustained• Integrated/coordinated• Family-centred• Empowering:

– enhancing participation and quality of life

– Minimising impact of disability on self and family

Early and Sustained Support• Barriers to Early Support

– Socio-economic• Family stress• Transport difficulties• Priorities

– Cultural • Acceptance both positive

and negative – Agency

• Lack of continuity (short-term contracts)

– Personal• Care needs overwhelm• Lack of knowledge of who

provides what and how to access– Professional

• Lack of Funding/Time to provide best care

• Poor coordination and information sharing

• Solutions– Improved targeted financial

assistance– Wealth shift– Mentor/Model/Guide– Better education / information– Whanau/Community– Improved coordination /

cooperation intra-agency– Managed Clinical Networks /

NHB?– Sustained funding