Start Strong Seminar - Developmental Paediatrician - Dr Andrew Marshall

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The IHC Childrens Rights Seminar on 23 March in Wellington which focused on Early and Sustained Support for Children with a Disability was a resounding success! Government and non-Government agencies, parents, advocates, and professionals from all sectors came together to discuss a range of issues facing children with a disability and their families in early life. The three presentations from the seminar can be accessed here and a further document stating IHC’s round up of the issues and plan for action will be released shortly.

IHC also announced the beginning of a new e-discussion group on this topic which received huge support, if you are interested in joining this group please email laura.o.donovan@ihc.org.nz indicating your interest and what you would like to get from this discussion group.

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  • 60% individuals with Autism have inattention, and 40% have symptoms of hyperactivity.
  • Arbitrary “boxes“ superimposed on a continuous distribution of behavioural symptoms, overlapping with severe intellectual disability at one end and the normal range at the other. Cognitive function is not part of the standard diagnostic criteria, but is an important variable that affects the social and language phenotype, and may also determine the type of repetitive or restricted behaviours exhibited.
  • Some evidence of a “second hit” from an environmental insult, such as viral infection, causing autistic regression in some children. Controversy whether it conveys a worse prognosis or whether it is a biologically distinct disorder from autism without regression
  • 25-30% clients with SLD have ASD 75% of ASD have SLD
  • Start Strong Seminar - Developmental Paediatrician - Dr Andrew Marshall

    1. 1. IHC Start Strong Seminar: Earl y and Sustained Support for Children with a Disability 23 March 2010 Andrew Marshall Developmental Paediatrician Puketiro Child Development Team
    2. 2. Overview <ul><li>Introduction </li></ul><ul><li>Early Correct Diagnosis </li></ul><ul><ul><li>Barriers to Early Diagnosis </li></ul></ul><ul><ul><li>Proposed Solutions </li></ul></ul><ul><li>Early Supports currently available; </li></ul><ul><ul><li>Barriers preventing supports being </li></ul></ul><ul><ul><ul><li>High quality </li></ul></ul></ul><ul><ul><ul><li>Timely, frequent and sustained </li></ul></ul></ul><ul><ul><ul><li>Integrated/coordinated </li></ul></ul></ul><ul><ul><ul><li>Family-centred </li></ul></ul></ul><ul><ul><li>Proposed Solutions </li></ul></ul>
    3. 3. Introduction – My Personal Perspective <ul><li>Developmental Paediatrician at Child Development Team </li></ul><ul><li>Part of CCDHB </li></ul><ul><li>Work in a team </li></ul><ul><ul><li>Administration staff </li></ul></ul><ul><ul><li>Management </li></ul></ul><ul><ul><li>Occupational Therapists </li></ul></ul><ul><ul><li>Developmental Paediatricians </li></ul></ul><ul><ul><li>Physiotherapists </li></ul></ul><ul><ul><li>Psychologists </li></ul></ul><ul><ul><li>Speech Language Therapists </li></ul></ul><ul><ul><li>Social Worker </li></ul></ul><ul><ul><li>VNDTs (Visiting Neurodevelopmental Therapists) </li></ul></ul><ul><li>We see children referred by a health professional, who have a developmental problem, or are at risk of developmental problems </li></ul><ul><li>Global Developmental Disability/Intellectual Disability </li></ul><ul><li>Autism/Asperger syndrome </li></ul><ul><li>Cerebral Palsy </li></ul><ul><li>Developmental Syndromes </li></ul><ul><li>Acquired Brain Injury </li></ul><ul><li>Behavioural or emotional or physical health problems in a child with a disability </li></ul><ul><li>Disability due to neglect/abuse </li></ul>
    4. 4. Early Diagnosis - Why is it important? <ul><li>Most (85%) of a baby's </li></ul><ul><li> brain development </li></ul><ul><li>occurs after the birth </li></ul><ul><li>- in the first 3 years   </li></ul><ul><li>Child’s experiences </li></ul><ul><li>during these years that </li></ul><ul><li>enable brain to grow. </li></ul><ul><li>Relationally-rich experiences provide children with the 'brain-food' they need to grow into happy, secure and well functioning adults </li></ul>
    5. 5. Early Diagnosis – Why is it important? <ul><li>A child’s developmental course is determined genetically, in combination with their environment </li></ul><ul><li>Children are “wired” to learn, and will do so unless in a deprived environment </li></ul><ul><li>Evidence that Early Educational Intervention improves long-term outcome </li></ul>
    6. 6. Pharmacological Management <ul><li>Risperidone (aggressive, disturbed, anxious behaviour) </li></ul><ul><li>SSRI (obsessive compulsive, anxious behaviour) </li></ul><ul><li>Stimulants (hyperactive, short attention span) </li></ul><ul><li>Atomoxetine/Clonidine (mixed profile) </li></ul><ul><li>Melatonin (sleep) </li></ul><ul><li>Omega 3 (general brain enhancement?) </li></ul><ul><li>Muscle relaxants (Baclofen) </li></ul><ul><li>Botulinum Toxin </li></ul><ul><li>Anticonvulsants </li></ul><ul><li>Nutritional support </li></ul>
    7. 7. Early Correct Diagnosis - Trends Behaviour Cognition <ul><li>Improving knowledge in Early Childhood Professionals (i.e. Plunket, Preschool Teachers) of normal developmental and of developmental disabilities -> earlier recognition and referral </li></ul><ul><li>Better accessible information sources (internet) </li></ul><ul><li>Smaller, later families and reduced care giving networks may have decreased parent knowledge </li></ul>
    8. 8. Overlapping Neuromaturational Delays
    9. 9. Early Correct Diagnosis <ul><li>Parental concerns about their child’s development need recognition/validation </li></ul><ul><li>Early intervention does not require a diagnosis </li></ul><ul><li>However, a diagnosis serves as a “short-hand” to direct the most appropriate action at the best time </li></ul><ul><li>A correct diagnosis empowers by enabling understanding of needs and what the future may hold. It defines both strengths and difficulties </li></ul><ul><li>Beware the dangers of a diagnosis – restricting future possibilities </li></ul><ul><li>Accurate diagnosis must be timely, high quality and collaborative </li></ul>
    10. 10. Early Correct Diagnosis <ul><li>Barriers to Early Diagnosis </li></ul><ul><ul><li>Socio-economic </li></ul></ul><ul><ul><ul><li>Family stress </li></ul></ul></ul><ul><ul><ul><li>Transport difficulties </li></ul></ul></ul><ul><ul><ul><li>Priorities </li></ul></ul></ul><ul><ul><li>Cultural </li></ul></ul><ul><ul><ul><li>Acceptance both positive and negative </li></ul></ul></ul><ul><ul><ul><li>Resistance to formal assessment measures within Education </li></ul></ul></ul><ul><ul><li>Personal </li></ul></ul><ul><ul><ul><li>Denial as a manifestation of grief </li></ul></ul></ul><ul><ul><ul><li>Lack of knowledge of normal versus abnormal developmental paths </li></ul></ul></ul><ul><ul><li>Professional </li></ul></ul><ul><ul><ul><li>Specialist vs. generalist </li></ul></ul></ul><ul><ul><ul><li>Expertise vs. flexibility and access </li></ul></ul></ul><ul><li>Solutions </li></ul><ul><ul><li>Improved targeted financial assistance </li></ul></ul><ul><ul><li>Wealth shift </li></ul></ul><ul><ul><li>Mentor/Model/Guide </li></ul></ul><ul><ul><li>Education </li></ul></ul><ul><ul><li>Whanau/Community </li></ul></ul><ul><ul><li>Change in policy (Special Education Review currently) </li></ul></ul><ul><ul><li>Managed Clinical Networks / NHB? </li></ul></ul>
    11. 11. Early Supports: Remember the Social Model of Disability NO PROBLEM PROBLEM GENES ENVIRONMENT An impairment is only disabling if the environment is not adapted to it
    12. 12. Early Supports <ul><li>Goal of Support and Management of Disability: </li></ul><ul><ul><li>Treat or minimise impairment and maximise potential </li></ul></ul><ul><ul><li>Change environment so it is more enabling not disabling </li></ul></ul><ul><ul><li>Prevent complications of disability </li></ul></ul><ul><ul><li>Support family / whanau in providing care for disabled child and themselves. </li></ul></ul>
    13. 13. Early Supports currently available: <ul><li>Government financial assistance (WINZ) </li></ul><ul><li>Government Agencies (funded by MoE/MoH/MSD) </li></ul><ul><li>Contracted Charity Organisations </li></ul><ul><li>Private Providers </li></ul>
    14. 14. Government financial assistance (WINZ) <ul><li>Child Disability Allowance </li></ul><ul><li>Disability Allowance (Low Income) </li></ul><ul><li>DPB-CSI (Domestic Purposes Benefit – Carer of Sick or Infirm) </li></ul><ul><li>Community Services Card </li></ul>
    15. 15. Government Agencies (funded by MoE/MoH/MSD) <ul><li>District Health Board </li></ul><ul><ul><li>Inpatient and outpatient medical, mental health and therapy provision </li></ul></ul><ul><ul><ul><li>Free but wait-listed for some services </li></ul></ul></ul><ul><ul><li>NASC (Capital Support in CCDHB) </li></ul></ul><ul><ul><ul><li>Home Help and Respite Care – must have intellectual disability or severe physical disability </li></ul></ul></ul><ul><li>Other MoH Services </li></ul><ul><ul><li>Tautoko Services </li></ul></ul><ul><ul><ul><li>Behaviour management assessment, support and advice for children and adults with intellectual disability or autism </li></ul></ul></ul><ul><ul><li>Enable </li></ul></ul><ul><ul><ul><li>Equipment and Housing Modifications </li></ul></ul></ul><ul><ul><li>PHO’s / GPs </li></ul></ul><ul><ul><ul><li>Family doctor plus some social work and other roles </li></ul></ul></ul><ul><li>Child Youth and Family Service </li></ul><ul><li>ACC </li></ul>
    16. 16. Educational Services <ul><li>Group Special Education </li></ul><ul><li>Special Education Grant </li></ul><ul><li>RTLBs </li></ul><ul><li>Supplementary Learning Support </li></ul><ul><li>ORRS </li></ul><ul><li>Severe Behaviour </li></ul><ul><li>Communication </li></ul><ul><li>High Health Needs </li></ul><ul><li>Moderate Physical Needs </li></ul><ul><li>Fund-holding and Special Schools </li></ul>
    17. 17. Educational Strategies <ul><li>Focus on quality of learning not quantity, enjoyment, and participation </li></ul><ul><li>Highly structured and predictable classroom routines </li></ul><ul><li>Individualised programme </li></ul><ul><li>Recognise fatigue (headaches /irritability) from concentrating twice as hard as average kids </li></ul><ul><li>Reduce instruction length and reinforce verbal instruction visually (and vice versa) and give child time for response </li></ul><ul><li>Organise complex tasks into simple steps and prompt </li></ul><ul><li>Reduce distraction (sit at front next to studious kids) </li></ul><ul><li>Encourage/reward achievement </li></ul><ul><li>Allow self-regulation for stress (time-out area, run around, squeeze a ball) </li></ul>
    18. 18. Contracted Charity Organisations / NGOs <ul><li>Disorder Specific </li></ul><ul><ul><li>Autism NZ, IHC, CCS, BLENZ, </li></ul></ul><ul><li>Service Specific </li></ul><ul><ul><li>Wellington City Mission /Sisters of Compassion </li></ul></ul><ul><ul><li>Plunket </li></ul></ul><ul><ul><li>WEIT/Conductive Education </li></ul></ul><ul><ul><li>RDA </li></ul></ul>
    19. 19. Private Providers <ul><li>Private Therapists </li></ul><ul><li>Tutoring agencies (SPELD etc) </li></ul><ul><ul><li>Assessment and targeted therapy for Specific Learning Disabilities </li></ul></ul><ul><li>ABA </li></ul><ul><li>Biomedical </li></ul><ul><li>Alternative </li></ul>
    20. 20. Other issues <ul><li>Transition to Adult Services </li></ul><ul><ul><li>Lack of services and supports </li></ul></ul><ul><li>Child Protection </li></ul><ul><ul><li>Poor information-sharing </li></ul></ul><ul><ul><li>Difficulties recognising emotional vs. physical neglect </li></ul></ul><ul><ul><li>Can present with signs of a neuromaturational disorder </li></ul></ul>
    21. 21. Goals – Early and Sustained Support <ul><ul><ul><li>High quality – “evidence-based” </li></ul></ul></ul><ul><ul><ul><li>Appropriately and securely funded </li></ul></ul></ul><ul><ul><ul><li>Timely, frequent and sustained </li></ul></ul></ul><ul><ul><ul><li>Integrated/coordinated </li></ul></ul></ul><ul><ul><ul><li>Family-centred </li></ul></ul></ul><ul><ul><ul><li>Empowering: </li></ul></ul></ul><ul><ul><ul><ul><li>enhancing participation and quality of life </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Minimising impact of disability on self and family </li></ul></ul></ul></ul>
    22. 22. Early and Sustained Support <ul><li>Barriers to Early Support </li></ul><ul><ul><li>Socio-economic </li></ul></ul><ul><ul><ul><li>Family stress </li></ul></ul></ul><ul><ul><ul><li>Transport difficulties </li></ul></ul></ul><ul><ul><ul><li>Priorities </li></ul></ul></ul><ul><ul><li>Cultural </li></ul></ul><ul><ul><ul><li>Acceptance both positive and negative </li></ul></ul></ul><ul><ul><li>Agency </li></ul></ul><ul><ul><ul><li>Lack of continuity (short-term contracts) </li></ul></ul></ul><ul><ul><li>Personal </li></ul></ul><ul><ul><ul><li>Care needs overwhelm </li></ul></ul></ul><ul><ul><ul><li>Lack of knowledge of who provides what and how to access </li></ul></ul></ul><ul><ul><li>Professional </li></ul></ul><ul><ul><ul><li>Lack of Funding/Time to provide best care </li></ul></ul></ul><ul><ul><ul><li>Poor coordination and information sharing </li></ul></ul></ul><ul><li>Solutions </li></ul><ul><ul><li>Improved targeted financial assistance </li></ul></ul><ul><ul><li>Wealth shift </li></ul></ul><ul><ul><li>Mentor/Model/Guide </li></ul></ul><ul><ul><li>Better education / information </li></ul></ul><ul><ul><li>Whanau/Community </li></ul></ul><ul><ul><li>Improved coordination / cooperation intra-agency </li></ul></ul><ul><ul><li>Managed Clinical Networks / NHB? </li></ul></ul><ul><ul><li>Sustained funding </li></ul></ul>

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