Early support seminar Rosemary Marks

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  • 25-30% clients with SLD have ASD 75% of ASD have SLD
  • This presentation came about when I was working as a developmental fellow last year, and still at the end of the year I was confused about all the different services that exist. It doesn’t come naturally, and similar to computers, once who think you understand the system, they start changing names of agencies, or new services or programmes become available. This presentation is by no means complete, and I welcome any suggestions and corrections. It is meant as a guideline and reference point for registrars and fellows coming to work with the developmental team here at Auckland, and although the services described in this presentation have the same function in other DHBs, they might have different names.
  • When I started looking into the all the different referral and services pathway, I tried to put them all onto one big flow chart, and it soon became obvious, this would be clear as mud!
  • Early support seminar Rosemary Marks

    1. 1. EARLY SUPPORT FOR CHILDREN WITH DISABILITY ROSEMARY MARKS DEVELOPMENTAL PAEDIATRICS STARSHIP CHILDREN'S HOSPITAL
    2. 2. Overview <ul><li>Early Correct Diagnosis </li></ul><ul><ul><li>Why is it important </li></ul></ul><ul><ul><li>Barriers to Early Diagnosis </li></ul></ul><ul><li>Early Supports currently available; </li></ul><ul><ul><li>Education </li></ul></ul><ul><ul><li>Parental roles </li></ul></ul><ul><ul><li>Other supports </li></ul></ul><ul><ul><li>Parental self care </li></ul></ul>
    3. 3. Early Diagnosis - Why is it important? <ul><li>Most (85%) brain </li></ul><ul><li>development occurs </li></ul><ul><li>before 3 years of age </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>
    4. 4. Early Diagnosis <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>
    5. 5. 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>Potential dangers of diagnosis – restricting future possibilities </li></ul><ul><li>Accurate diagnosis must be timely, high quality and collaborative </li></ul>
    6. 6. BARRIERS TO EARLY DIAGNOSIS <ul><li>Difficulty not recognised: </li></ul><ul><ul><li>Parent and/or family; societal change </li></ul></ul><ul><ul><li>Health providers </li></ul></ul><ul><ul><li>Education providers </li></ul></ul><ul><li>Difficulty not acknowledged – denial: </li></ul><ul><ul><li>Parent and/or family </li></ul></ul><ul><ul><li>Health providers </li></ul></ul><ul><ul><li>Education providers </li></ul></ul>
    7. 7. BARRIERS TO EARLY DIAGNOSIS <ul><li>Access to diagnostic services: </li></ul><ul><ul><li>Gatekeepers </li></ul></ul><ul><ul><li>Geographical barriers </li></ul></ul><ul><ul><li>Administrative barriers </li></ul></ul><ul><ul><li>Cost </li></ul></ul><ul><li>Appropriate knowledge and expertise </li></ul><ul><li>Philosophical barriers </li></ul><ul><li>Cultural and language barriers </li></ul>
    8. 8. BUT…ITS GETTING BETTER <ul><li>Improved knowledge base of professionals </li></ul><ul><li>Emphasis on evidence based practice </li></ul><ul><li>More availability of training </li></ul><ul><li>Parents have more access to information – the internet (good, bad and ugly) </li></ul><ul><li>Improved technology – especially imaging and genetics – means earlier correct diagnosis is possible e.g. PWS </li></ul>
    9. 9. 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>
    10. 10. Educational and Intervention Services – under 5s <ul><li>Child Development Teams (DHBs) </li></ul><ul><li>Special Education (Ministry of Education) </li></ul><ul><ul><li>Early Intervention Teams </li></ul></ul><ul><ul><li>Early and Ongoing Support (Auckland Region) </li></ul></ul><ul><li>CCS Disability Action </li></ul><ul><li>Ohomairangi Trust </li></ul><ul><li>Preschool programmes in Special Schools </li></ul><ul><li>Subsidised providers e.g. Conductive Education </li></ul><ul><li>Private providers </li></ul>
    11. 11. Educational Services – 5+ <ul><li>Special Education (Ministry of 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>
    12. 12. 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>
    13. 13. 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>
    14. 14. <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>
    15. 15. In the forest of disability support – finding the path ROSEMARY MARKS DEVELOPMENTAL PAEDIATRICS STARSHIP CHILDREN'S HOSPITAL
    16. 16. Clear as Mud Developmental Services and Referrals Jutta van den Boom, 2008
    17. 18. LOST IN THE FOREST - A GUIDE TO FINDING THE CANDY HOUSE   SUPPORT FOR FAMILIES WHO HAVE A CHILD WITH CHRONIC ILLNESS OR DISABILITY
    18. 19. Is there a common theme here?? And if health professionals find the system difficult to negotiate – how hard is it for users of the system?
    19. 20. Parents and families <ul><li>Parental roles </li></ul><ul><ul><li>Nurturing Parent </li></ul></ul><ul><ul><li>Caregiving Parent </li></ul></ul><ul><ul><li>Nurse </li></ul></ul><ul><ul><li>Educator and Therapist </li></ul></ul><ul><ul><li>Advocate </li></ul></ul><ul><li>Grief </li></ul><ul><li>Demands of care </li></ul><ul><li>Costs of care </li></ul>
    20. 24. Parents and families <ul><li>Informal carers </li></ul><ul><ul><li>Family members who provide day to day care, </li></ul></ul><ul><ul><li>Not typical for other people of that age </li></ul></ul><ul><ul><li>Not paid (though may receive “benefit”) </li></ul></ul><ul><ul><li>Usually a long-term responsibility </li></ul></ul><ul><li>Formal carers </li></ul><ul><ul><li>Usually unrelated to person cared for </li></ul></ul><ul><ul><li>Paid (though low rates of pay) </li></ul></ul><ul><ul><li>Defined tasks and hours of work </li></ul></ul>
    21. 25. Costs to Families <ul><li>Additional Costs of Disability and/or Illness </li></ul><ul><li>Loss of Earnings </li></ul><ul><li>Emotional Costs to all Family Members </li></ul><ul><li>Planned Change to Family Structure </li></ul><ul><li>Family Breakdown </li></ul>
    22. 26. Costs to Families: Additional Costs of Disability and/or Illness <ul><li>Additional Equipment Needs </li></ul><ul><ul><li>e.g. incontinence aids </li></ul></ul><ul><ul><li>Electricity costs for oxygen concentrator </li></ul></ul><ul><li>Supplementing State Funded Services e.g. speech therapy </li></ul><ul><li>Housing Alterations </li></ul><ul><ul><li>Child in master bedroom because of equipment </li></ul></ul><ul><li>Repairs to Damaged Furniture etc. </li></ul><ul><li>Child Care Costs </li></ul>
    23. 27. Costs to Families: Loss of Earnings <ul><li>Mothers (usually) who do not return to workforce </li></ul><ul><li>Longer interval to next child delays return to work </li></ul><ul><li>Difficulty in obtaining childcare </li></ul><ul><li>Redundancy </li></ul><ul><li>Fathers lose time from work to attend appointments with professionals </li></ul>
    24. 28. FUNDING STREAMS MOH ACC PERSONAL HEALTH MENTAL HEALTH DISABILITY SUPPORT DHBs JOE NASC
    25. 29. <ul><li>Chronic illness </li></ul><ul><ul><li>Carer support </li></ul></ul><ul><ul><li>Family options </li></ul></ul><ul><li>Carer support for children with chronic illness </li></ul><ul><ul><li>“ A very random process” (personal communication, social worker, Starship Med specs ward) </li></ul></ul><ul><ul><li>Only GPs and specialists can sign (changing?). </li></ul></ul><ul><ul><li>MOH sometimes request further information. </li></ul></ul><ul><ul><li>Comes from DHB personal health budget (we think). </li></ul></ul><ul><ul><li>Not available in some DHBs. </li></ul></ul>
    26. 30. <ul><li>Disability </li></ul><ul><ul><li>NASC services </li></ul></ul><ul><ul><li>Benefits </li></ul></ul><ul><ul><li>Other supports </li></ul></ul>
    27. 31. What support do the family have? <ul><li>Family/whanau support and resources </li></ul><ul><li>Community support and resources including parent support groups </li></ul><ul><li>State-funded support and resources </li></ul>
    28. 32. State-funded Support and Resources <ul><li>Work and Income (MSD) </li></ul><ul><li>Childhood Disability Allowance (CDA) </li></ul><ul><li>Other Benefits </li></ul><ul><ul><li>Invalid benefit if >16 years </li></ul></ul><ul><ul><li>Sickness benefit if >16 years and in NZ <10 years </li></ul></ul><ul><ul><li>Disability Allowance </li></ul></ul><ul><ul><li>Day care subsidy </li></ul></ul>
    29. 33. State-funded Support and Resources <ul><li>NASC- Needs Assessment Service Co-ordination </li></ul><ul><li>Eligibility </li></ul><ul><ul><li>Must meet MOH disability definition </li></ul></ul><ul><ul><li>0-65 years </li></ul></ul><ul><li>Provision </li></ul><ul><ul><li>Carer Support Subsidy ($76 per day) </li></ul></ul><ul><ul><ul><li>E.g. 30 days @ $76 = $2280 </li></ul></ul></ul><ul><ul><ul><li>152 hours @ $15 per hour or 6 days and 8 hours or <3 hours per week over one year </li></ul></ul></ul><ul><ul><li>Personal care packages </li></ul></ul><ul><ul><li>Residential care </li></ul></ul><ul><ul><li>Home alterations/equipment </li></ul></ul><ul><ul><li>Access to other services e.g. behavioural programmes, physiotherapy. </li></ul></ul>
    30. 34. RESPITE <ul><li>“ Out of home” – the person with a disability goes away to be cared for elsewhere </li></ul><ul><li>“ In home” – a respite carer comes into your home </li></ul><ul><li>If the respite facility or respite carer cares for your child or adult EXACTLY as you would like them to – you are very very fortunate </li></ul>
    31. 35. RESPITE <ul><li>Communication: </li></ul><ul><ul><li>Clear information about routines </li></ul></ul><ul><ul><li>Emergency care plans </li></ul></ul><ul><ul><li>Who to call and when to call – everyone is different </li></ul></ul>
    32. 36. MOH disability definition <ul><li>In order to access DSS, a person with a disability must meet the Ministry’s definition of disability; that is, be assessed as having either a physical, intellectual, sensory, psychiatric or age-related disability, or a combination of these, where the disability is likely to: </li></ul><ul><li>continue for a minimum of six months </li></ul><ul><li>result in a reduction of independent function to the extent that ongoing support is required . </li></ul><ul><li>Source: http://www.moh.govt.nz/moh.nsf/wpg_Index/Publications-Health+and+Independence+Report+2003+-+online+5 </li></ul>
    33. 37. NASC – Problems <ul><li>Lack of information about the process for families and health providers. </li></ul><ul><li>Variation across the country and within NASCs </li></ul><ul><li>Minimal change in “subsidy” over last 20 years. </li></ul><ul><li>Failure of contracted “providers” to supply. </li></ul><ul><li>Lack of care providing workforce. </li></ul><ul><li>Carers’ costs and time for transport to provide care. </li></ul>
    34. 38. QUOTES FROM FAMILIES <ul><li>There are huge gaps in services and NASC agencies are hard to get hold of and only seem helpful in crisis. It would be nice to feel supported before things got to that point. </li></ul><ul><li>We are like hostages in our own home. </li></ul><ul><li>Families such as ours need ongoing, reliable and qualified people, working alongside our disabled members. </li></ul>
    35. 39. Discharge Planning <ul><li>Essential component of quality hospital care </li></ul><ul><li>Starts early in hospital episode </li></ul><ul><li>Involves family and professional multidisciplinary team working in partnership </li></ul><ul><li>Does not make family responsible for organising after hospital care </li></ul><ul><li>Ensures optimal long term result of medical/surgical intervention </li></ul>
    36. 40. Parents and families <ul><li>Parental roles </li></ul><ul><ul><li>Nurturing Parent </li></ul></ul><ul><ul><li>Caregiving Parent </li></ul></ul><ul><ul><li>Nurse </li></ul></ul><ul><ul><li>Educator and Therapist </li></ul></ul><ul><ul><li>Advocate </li></ul></ul><ul><li>Grief </li></ul><ul><li>Demands of care </li></ul><ul><li>Costs of care </li></ul>
    37. 43. THE MESSAGE <ul><li>If you do not look after yourself, you will not be able to look after others. </li></ul><ul><li>Carers need: </li></ul><ul><ul><li>Personal time </li></ul></ul><ul><ul><li>Couple time </li></ul></ul><ul><ul><li>Time with other family members </li></ul></ul><ul><li>Other family members need: </li></ul><ul><ul><li>Time with you! </li></ul></ul>
    38. 44. Maslow’s hierarchy of needs
    39. 45. SUMMARY & SOLUTIONS <ul><li>Early diagnosis needs knowledge, understanding and openness </li></ul><ul><li>Early diagnosis should lead to early support </li></ul><ul><li>Support needs to be co-ordinated </li></ul><ul><li>Agencies need to work together – and this takes time </li></ul><ul><li>Parents need care too </li></ul>
    40. 46. FURTHER INFORMATION <ul><li>http://www.kidshealth.org.nz </li></ul><ul><li>http://www.kidshealth.org.nz/index.php/ps_pagename/contentpage/pi_id/21 </li></ul><ul><li>http://www.carers.net.nz </li></ul><ul><li>http://www.parentandfamily.org.nz </li></ul><ul><li>http://www.weka.net.nz </li></ul>
    41. 47. <ul><li>Acknowledgements: </li></ul><ul><ul><li>Andrew Marshall </li></ul></ul><ul><ul><li>Jutta van den Boom </li></ul></ul><ul><ul><li>And the families and children who teach us so much </li></ul></ul>
    42. 48. ANY QUESTIONS?

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