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.

1. What can we learn from NDIS?
Olaf Kraus de Camargo
@DevPeds
Presented at Annual PONDA Meeting, November 22nd, 2019

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. PONDA NDIS Podcasts

4. PONDA NDIS Podcasts
• “…but what we are seeing is a proliferation of much more direct
therapy models” (Bruce Bonyhady)

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. 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. Needs Assessment

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. Needs Assessment

10. Needs Assessment
Reviewed 33 measures of
functional health (children &
adults) including SIS & WeeFIM

11. Needs Assessment
Reviewed 33 measures of
functional health (children &
adults) including SIS & WeeFIM

12. Assessing Complexity

13. Assessing Complexity
• “Complexity arises at the intersection between individual and her/his
environment”

14. Assessing Complexity

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. 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. Buying Services

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. 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. 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. 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. 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. Assessing Evidence

24. Assessing Evidence
• “Yes/No” or “Strong/Weak”
Evidence?
• What is the goal?
• Where is the goal in the ICF?

25. What would you buy?

26. What would you buy?
Weighted blankets for sleep?

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. Feedback from Colleagues

29. Feedback from Colleagues
• Developmental Paediatrician:

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. 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. 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. Feedback from Colleagues

34. Feedback from Colleagues
• Developmental Paediatrician:

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. 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. 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. Feedback from Colleagues

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. Feedback from Colleagues

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. My Conclusion

43. My Conclusion
• Canada has similar challenges as Australia:

44. My Conclusion
• Canada has similar challenges as Australia:
✓ Huge inequities in service provision: Provinces, Regions, Populations, Diagnoses etc.

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. 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. 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. 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!