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What can we learn from NDIS?

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Presentation at the Physician's of Ontario Neurodevelopmental Advocacy (PONDA) Annual Meeting, summarizing the principles and challenges of the National Disability Insurance Scheme (NDIS) in Australia and how it might be applied in Canada.

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What can we learn from NDIS?

  1. 1. What can we learn from NDIS? Olaf Kraus de Camargo @DevPeds Presented at Annual PONDA Meeting, November 22nd, 2019
  2. 2. NDIS - Principles 1.More money is being spent on disability due to tax increase 2.Person w/Disability applies for NDIS 3.Based on diagnosis & needs, $ goes to the person 4.Person buys services (with the help of a service planner) 5.Government evaluates and monitors outcomes 2016 - 30.6 Billion Aus$ 2019 - 48 Billion Aus$ https://www.abc.net.au/news/2018-05-08/federal-budget-2018-sliced-diced- interactive/9723604#spending/breakdown/2017/health
  3. 3. PONDA NDIS Podcasts
  4. 4. PONDA NDIS Podcasts • “…but what we are seeing is a proliferation of much more direct therapy models” (Bruce Bonyhady)
  5. 5. PONDA NDIS Podcasts • “…but what we are seeing is a proliferation of much more direct therapy models” (Bruce Bonyhady) • “…the assessment tools are the challenge for the paediatricians and they’re going to have to sort that out” (William Cowie)
  6. 6. PONDA NDIS Podcasts • “…but what we are seeing is a proliferation of much more direct therapy models” (Bruce Bonyhady) • “…the assessment tools are the challenge for the paediatricians and they’re going to have to sort that out” (William Cowie) • “…if interventions aren’t working they simply won’t be funded” (William Cowie)
  7. 7. Needs Assessment
  8. 8. Needs Assessment • Only 1 in 10 people with a disability will qualify for NDIS ➡ Need for eligibility criteria • List of diagnoses • Functional Capacity Assessment
  9. 9. Needs Assessment
  10. 10. Needs Assessment Reviewed 33 measures of functional health (children & adults) including SIS & WeeFIM
  11. 11. Needs Assessment Reviewed 33 measures of functional health (children & adults) including SIS & WeeFIM
  12. 12. Assessing Complexity
  13. 13. Assessing Complexity • “Complexity arises at the intersection between individual and her/his environment”
  14. 14. Assessing Complexity
  15. 15. Assessing Complexity ★ Individual: • Multiple impairments • severe/profound intellectual impairment • Coexisting mental health issues • Significant health conditions • Behaviours of harm, alcohol and/or drug misuse • Experiences of trauma or neglect
  16. 16. Assessing Complexity ★ Individual: • Multiple impairments • severe/profound intellectual impairment • Coexisting mental health issues • Significant health conditions • Behaviours of harm, alcohol and/or drug misuse • Experiences of trauma or neglect ★ Environment • Socioeconomic disadvantage • Social isolation • Lack of service coordination • Lack of cross-sector collaboration
  17. 17. Buying Services
  18. 18. Buying Services Traditional Approach “real therapy” Contemporary Approach Role of Family Limited Active Role of Practitioner Treats child directly Empowers family, collaborative Focus of Intervention Deficits Strengths
  19. 19. Buying Services Traditional Approach “real therapy” Contemporary Approach Role of Family Limited Active Role of Practitioner Treats child directly Empowers family, collaborative Focus of Intervention Deficits Strengths “…describe “real therapy” as therapeutic treatment that is well bounded, addresses discrete problems, and is grounded in medical knowledge of pathology.”
  20. 20. Buying Services Traditional Approach “real therapy” Contemporary Approach Role of Family Limited Active Role of Practitioner Treats child directly Empowers family, collaborative Focus of Intervention Deficits Strengths “…describe “real therapy” as therapeutic treatment that is well bounded, addresses discrete problems, and is grounded in medical knowledge of pathology.”
  21. 21. Buying Services Traditional Approach “real therapy” Contemporary Approach Role of Family Limited Active Role of Practitioner Treats child directly Empowers family, collaborative Focus of Intervention Deficits Strengths “…therapeutic approaches in ECI that are collaborative and involve families in decision- making have been shown to have an indirect, positive impact on child and parent behaviour, functioning and psychological health” “…describe “real therapy” as therapeutic treatment that is well bounded, addresses discrete problems, and is grounded in medical knowledge of pathology.”
  22. 22. Buying Services Traditional Approach “real therapy” Contemporary Approach Role of Family Limited Active Role of Practitioner Treats child directly Empowers family, collaborative Focus of Intervention Deficits Strengths “…therapeutic approaches in ECI that are collaborative and involve families in decision- making have been shown to have an indirect, positive impact on child and parent behaviour, functioning and psychological health” “…describe “real therapy” as therapeutic treatment that is well bounded, addresses discrete problems, and is grounded in medical knowledge of pathology.” “…but what we are seeing is a proliferation of much more direct therapy models” (Bruce Bonyhady)
  23. 23. Assessing Evidence
  24. 24. Assessing Evidence • “Yes/No” or “Strong/Weak” Evidence? • What is the goal? • Where is the goal in the ICF?
  25. 25. What would you buy?
  26. 26. What would you buy? Weighted blankets for sleep?
  27. 27. What would you buy? Weighted blankets for sleep? Gringras, P., Green, D., Wright, B., Rush, C., Sparrowhawk, M., Pratt, K., … Wiggs, L. (2014). Weighted blankets and sleep in autistic children - A randomized controlled trial. Pediatrics, 134(2), 298–306. https://doi.org/10.1542/ peds.2013-4285
  28. 28. Feedback from Colleagues
  29. 29. Feedback from Colleagues • Developmental Paediatrician:
  30. 30. Feedback from Colleagues • Developmental Paediatrician: • “The system was driven philosophically, and defined itself 'against' the medical model of disability. As a result, they did not really include medical thinking in the planning towards implementation.
  31. 31. Feedback from Colleagues • Developmental Paediatrician: • “The system was driven philosophically, and defined itself 'against' the medical model of disability. As a result, they did not really include medical thinking in the planning towards implementation. • With kids, this 'against' mindset also precluded education from the planning stages.
  32. 32. Feedback from Colleagues • Developmental Paediatrician: • “The system was driven philosophically, and defined itself 'against' the medical model of disability. As a result, they did not really include medical thinking in the planning towards implementation. • With kids, this 'against' mindset also precluded education from the planning stages. • As a result, concepts of physical health and development and education are not included in the thinking or implementation to any meaningful extent. It is very silo.”
  33. 33. Feedback from Colleagues
  34. 34. Feedback from Colleagues • Developmental Paediatrician:
  35. 35. Feedback from Colleagues • Developmental Paediatrician: • “They started with strong rhetoric of function rather than diagnosis, but in practice this has not been the case. It is most evident with ASD, where a 'level 2' severity is automatic entry. This category alone sucks the central finances out of the paediatric program. It has led them to be more pedantic regarding diagnosis, but unable to meaningfully explore function and purpose.
  36. 36. Feedback from Colleagues • Developmental Paediatrician: • “They started with strong rhetoric of function rather than diagnosis, but in practice this has not been the case. It is most evident with ASD, where a 'level 2' severity is automatic entry. This category alone sucks the central finances out of the paediatric program. It has led them to be more pedantic regarding diagnosis, but unable to meaningfully explore function and purpose. • The people who make the assessments are poorly trained. As a result, there is large variability in what is provided. As expected, this favours the more articulate families.
  37. 37. Feedback from Colleagues • Developmental Paediatrician: • “They started with strong rhetoric of function rather than diagnosis, but in practice this has not been the case. It is most evident with ASD, where a 'level 2' severity is automatic entry. This category alone sucks the central finances out of the paediatric program. It has led them to be more pedantic regarding diagnosis, but unable to meaningfully explore function and purpose. • The people who make the assessments are poorly trained. As a result, there is large variability in what is provided. As expected, this favours the more articulate families. • The outcome of intervention is not evaluated. Therapists get block funding with little accountability.”
  38. 38. Feedback from Colleagues
  39. 39. Feedback from Colleagues • Physiotherapist: • “I believe the change has been substantial and positive. For implementation there was a huge amount of lobbying and advocacy from large numbers of consumers along with families and workers in the field. It was this advocacy that led to bipartisan support. One of the issues now is workforce training at all levels - Local Area Coordinators (that work on the Support Plans) often have not had the experience or knowledge to "get it right", there is still a lack of trained workforce in allied health etc. But many families who have children with severe disability are getting far more support and this is so positive for the person with the disability, their carers and the wider community.”
  40. 40. Feedback from Colleagues
  41. 41. Feedback from Colleagues • Physiotherapist: • “There has always been some debate about which services fall into each of the categories of health, education and disability support. The NDIS does not cover health or education. If children need support in education, this is still funded (often inadequately) from a totally different pot of money. Similarly with health, if a child has an operation, the post-operative care is funded by health, although this becomes tricky when it is a procedure to improve, or that will impact on, function. I am not sure how well the question is answered as to when the health management stops and when NDIS kicks in.”
  42. 42. My Conclusion
  43. 43. My Conclusion • Canada has similar challenges as Australia:
  44. 44. My Conclusion • Canada has similar challenges as Australia: ✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc.
  45. 45. My Conclusion • Canada has similar challenges as Australia: ✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc. ➡National Disability Strategy! Fair and Needs-based Services!
  46. 46. My Conclusion • Canada has similar challenges as Australia: ✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc. ➡National Disability Strategy! Fair and Needs-based Services! ★ Service planning WITH families requires the establishment of trusting relationships, familiarity with the issues/goals and knowledge about best evidence - role for paediatricians and clinicians that already know child and family
  47. 47. My Conclusion • Canada has similar challenges as Australia: ✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc. ➡National Disability Strategy! Fair and Needs-based Services! ★ Service planning WITH families requires the establishment of trusting relationships, familiarity with the issues/goals and knowledge about best evidence - role for paediatricians and clinicians that already know child and family ★ We need valid and reliable instruments to assess needs and outcomes and people trained to use them
  48. 48. My Conclusion • Canada has similar challenges as Australia: ✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc. ➡National Disability Strategy! Fair and Needs-based Services! ★ Service planning WITH families requires the establishment of trusting relationships, familiarity with the issues/goals and knowledge about best evidence - role for paediatricians and clinicians that already know child and family ★ We need valid and reliable instruments to assess needs and outcomes and people trained to use them ★ Close collaboration between families, practitioners, researchers and policymakers/ politicians is fundamental - a project for PONDA!

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