Breaking the Mould - Rethinking Disability, Services, and Support Across the Lifespan

Abstract: Development is, by its very nature, disruptive. Children grow - out of clothes, out of toys, out of roles and rules that once defined them. Each stage of growth brings with it new possibilities, but also new tensions: a process of breaking through boundaries that once felt like home. When we reflect on “breaking the mould” in the context of childhood-onset disability, we must ask: whose moulds are being broken - and who built them?
In this keynote, I will explore how our evolving understanding of disability has prompted fundamental shifts in service design, delivery, and purpose. Over the past 50 years, the field has expanded its focus from isolated body parts to whole people - viewing children not only through the lens of impairments, but within the rich contexts of family, culture, community, and rights. This transformation has demanded more than updated terminology. It has required us to rethink systems: to dismantle silos between ministries, to embrace inter- and transdisciplinary models of care, and to center the voices of children and families in decisions about their own lives.
Breaking the mould is not a one-time event - it is a developmental process. As our concepts of inclusion, participation, and equity mature, our services must grow with them. This keynote invites participants to reflect on how we can continue breaking old assumptions and building new structures that honour the diverse ways children with disabilities engage with the world.

1. Breaking the Mould
Rethinking Disability, Services, and Support Across the Lifespan
Olaf Kraus de Camargo
Changemakers Kids+ Conference 2025
Torquay, traditional lands of the Wadawurrung people, 4-5 September 2025

2. Mould?
•“A hollow form or matrix for shaping a fluid or plastic substance”
•“A distinctive and typical style, form, or character”
•“A conventional pattern or design from which others are based on”
•“A traditional or accepted way of behaving, specific to a particular society, place, or time”
•“A fixed or restrictive rule or convention”
https://www.wordhippo.com/what-is/another-word-for/mould.html

3. “Rimless”

4. “Paintingout oftheFrame”
“Out of the Frame” by Nadra Khan

5. The mould of this talk…
Developmental Theories
Parenting Models
Therapeutic Approaches
Service Structures and Systems
Neurodevelopmental
Disabilities

6. Motor Development
1.Maturation
•Reflexes – voluntary movements
•Pre-determined stages
•Therapy: inhibit “pathological” reflexes, promote
development in the “right” sequence, early
stimulation

7. Motor Development
https://www.ini.usc.edu
1.Maturation
•Sunshine
•Water
•Soil
•Fertilizer
https://en.wikipedia.org/wiki/Biosphere_2

8. Motor Development
https://www.ini.usc.edu
1.Maturation
•Reflexes – voluntary movements
•Pre-determined stages
•Therapy: inhibit “pathological” reflexes, promote
development in the “right” sequence, early
stimulation
2.Dynamic Systems
•Movement surges from the interaction of systems
(body – task – environment)
•Therapy aims to integrate all systems
https://youtu.be/_uXf7osK1Pk?si=x6tH8Aa6BHVUoQer

9. Motor Development
https://www.ini.usc.edu
1.Maturation
•Reflexes – voluntary movements
•Pre-determined stages
•Therapy: inhibit “pathological” reflexes, promote
development in the “right” sequence, early
stimulation
2.Dynamic Systems
•Movement surges from the interaction of systems
(body - task – environment)
•Therapy aims to integrate all systems
3.Neuronal Group Selection Theory (NGST)
•Integrates the previous theories – innate motor
patterns allow for active volitional movements
•From the variability of movements and contexts
the most efficient neuronal groups are selected
•Therapy aims to promote autonomy, variability
and opportunities to practice and repeat
Hadders-Algra, M. (2000). The neuronal group selection theory: promising principles for understanding
and treating developmental motor disorders. Dev Med Child Neurol, 42(10), 707-715.

10. Examples
https://youtu.be/W4TIKiKDxUI?si=ZP1LuB0v0qKzGeDq
https://youtu.be/lJlF4X50KKQ?si=pZIdoEYyw3-osbth

11. Development
Group Trajectory – “Milestones” Individual Trajectories
Tupsila, R., Siritaratiwat, W., Bennett, S., Mato, L., & Keeratisiroj, O. (2022). Intra-
Individual Variability in Gross Motor Development in Healthy Full-Term Infants Aged 0-13
Months and Associated Factors during Child Rearing. Children (Basel), 9(6).
https://doi.org/10.3390/children9060801

12. Behaviour Development
▪Theory: “Psychodynamic processes determine child development”
➢Mothers of autistic children do not interact much with them
(refrigerator moms”)
➢Treatment: Psychoanalysis for the mother and “Parentectomy” for the
child (institutionalization)
van Rosmalen, L., van der Veer, R., & van der Horst, F. C. (2020). The nature of love: Harlow,
Bowlby and Bettelheim on affectionless mothers. Hist Psychiatry, 31(2), 227-231.
doi:10.1177/0957154X19898997

13. Behaviour Development
“Overall, AAC intervention was found to have a positive effect on challenging behavior.”
“Behaviour is Communication”

14. Parenting Models

15. Parenting Models
Rosenbaum, P., & Chambers, E. M. (2025). In developmental
disability, parenting is a dance led by the child. Dev Med Child
Neurol. https://doi.org/10.1111/dmcn.16457

16. Discipline
in press, 2025
Spanking of children between 2 and 12 is permissible in Canada!
Painting by Ella Kraus, 2025

17. Family

18. Family-Centredness
▪Each family is unique.
▪ The family is the constant in the child’s life.
▪Family members are the experts of the child’s abilities and needs.
▪The family works with service providers to make informed decisions about
the services and supports the child and family receive.
▪The strengths and needs of all family members are considered.
https://canchild.ca/research-in-practice/family-centred-service/

19. Strengths-based approach
“Damage Model” “Strengths Model” (Charles Rapp & Ronna
Chamberlain, 1980s)
▪Goal orientation, allowing clients to set and pursue personally meaningful goals.
▪Systematic assessment of strengths, requiring practitioners to map existing assets across
different life domains.
▪Resource-rich environment, where community and relationships are seen as the primary sources
of opportunity and support for the patient.
▪Explicit use of strengths, anchoring tasks and plans on the identified strengths. This approach
fosters a sense of connection and support, enabling the patient to feel part of a larger network.
▪Hope-inducing relationships, the alliance between the helper, therapist, clinician and the
client/patient should actively foster optimism, self-efficacy and expand their possibilities.
▪Meaningful choice, so that clients or patients keep the authority over their goals, the pace in
which they aim to achieve these goals, and the selection of the strategies and resources they will
use.
Kraus de Camargo, O. (2025). Viewpoint: taking a strengths-based approach to developmental disability: the F-
words for child development. BMJ Pediatrics Open, 9(1), 1–2. https://doi.org/10.1136/bmjpo-2025-003418

20. Breaking Rules
“Learn the ruleslike a pro, so you can break them like an artist”
Pablo Picasso

21. The Rules
“Science andCare”, Pablo Picasso, 1897, http://www.bcn.cat/museupicasso/es/coleccion/mpb110-046.html
1.Health: a complete state of
physical, mental and social well-
being
2.Diagnosis defines the therapy
3.Doctors make the diagnosis
and prescribe the therapy
4.Therapists treat according to
the prescription of doctors
5.Development is a linear
progression
6.Patients have to be “patient”

22. Health
▪WHO (World Health Organization): a state of complete physical, mental
and social well-being, not only the absence of disease or illness.
▪Huber et al.: the ability to adapt and self-manage in the face of adverse
physical, mental and social circumstances.
➢Functioning (regardless of the degree of impairment) is evidence of
health
➢Functioning as the third indicator of health besides morbidity and
mortality
•Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad, A. R., Kromhout, D., Leonard, B., Lorig,
K., Loureiro, M. I., van der Meer, J. W., Schnabel, P., Smith, R., van Weel, C., & Smid, H. (2011). How
should we define health? BMJ, 343, d4163. https://doi.org/10.1136/bmj.d4163
•Bickenbach, J., Rubinelli, S., Baffone, C., & Stucki, G. (2023). The human functioning revolution:
implications for health systems and sciences. Frontiers in Science, 1.
https://doi.org/10.3389/fsci.2023.1118512

23. Diagnosis
1.Is the ability to “tell apart” (dia = separate;
gnosis = knowledge)
2.Depends on the gathering of information and
facts (history, physical exam, test results)
3.Is a process of hypothesis generation...
4....with continuous ruling out until the best
fitting explanation is established
“I saw the angel in the marble and carved until I set him free” (Michelangelo)
https://i.pinimg.com/originals/89/2c/5b/892c5bf414df2c2fc1d018945fae191a.jpg

24. Functioning Profile
https://melbournedaily.blogspot.com/2023/02/australian-mosaic.html
1.Also collects data but with the
purpose of aggregating them
2.Is a process of analysis of
systemic interactions...
3....depending on the constant
validation by the patient and...
4....the collaboration of a whole
team
Creating a functioning profile is like putting together the pieces of a mosaic

25. Patients are complex
“Complexity arises at the intersection between
an individual and her or his environment”

26. Braking Rules
“Guernica”, Pablo Picasso, 1937, https://www.museoreinasofia.es/coleccion/obra/guernica

27. cell
tissue
organ
body
illness
Health
Therapy
Linear thinking

28. cell
tissue
organ
body
illness
Therapy
Linear thinking
Disability

29. Linear thinking
Impairment Disability Handicap
OMS (ICIDH), 1989
Body Functions and
Structures
Participation Environmental Factors

30. Systemic thinking
WHO (ICF), 2001
Body Functions and
Structures
Participation
Environmental Factors
Activities
Personal Factors
Health Condition

31. How to work together?
FitnessFriends
Family
Functioning
Fun
Future

32. How to work together?
FitnessFriends
Family
Functioning
Fun
Future
Wright, F. V., Rosenbaum, P. L., Goldsmith, C. H.,
Law, M., & Fehlings, D. L. (2008). How do changes
in body functions and structures, activity, and
participation relate in children with cerebral palsy?
Dev Med Child Neurol, 50(4), 283-289.
https://doi.org/10.1111/j.1469-8749.2008.02037.x

33. Participation
Imms, C. (2020). The Nature of Participation. In C. Imms & D. Green (Eds.), Participation:
Optimising Outcomes in Childhood-Onset Neurodisability (pp. 5–11). Mac Keith Press.

34. Therapeutic approaches
Acute Care
Developmental Care
Developmental Care
Developmental Care
Developmental Care
Strategy
curative,
eliminate the cause
optimization,
bio-psycho-social
Patients
passive, “compliant”
active, empowered
Health Professionals
give orders, prescribe
Counsel, accompany, part
of a team

35. Teamwork
Discipline 1 Discipline 2 Discipline 1Discipline 2
Unidisciplinary Multidisciplinary Interdisciplinary
Discipline 1

36. Teamwork
Discipline 1 Discipline 2 Discipline 1Discipline 2
Unidisciplinary Multidisciplinary Interdisciplinary
Transdisciplinary Service
Discipline 1

37. Policies, Systems & Services
1. Focus on development not diagnosis
•Functional abilities and needs
•Lifespan approach
2. Focus on family and child
•Support for parents supports the child
•Impact of social determinants of health
3. Strength-based

38. Ontario Autism Program
Eligibility:
•Be under 18
•Live in Ontario
•Diagnosis of ASD

39. Ontario Autism Program

40. Speech and Language
Foundational and continuous
elements of children’s services

41. Speech and Language

42. Child Development Services
https://files.ontario.ca/mccss-smart-start-hubs-policy-and-practice-guidelines-en-2022-05-02.pdf

43. Child Development Services
The SmartStart Hub worker engages
in an exploratory conversation with
the family, using the About My Child
tool as a guide to ask questions and
gather information.
Exploratory Conversations

44. Access and Equity Inquiry
A tool to explore personal and
environmental factors related to
accessing services, such as logistics,
basic needs and family issues.

45. Canada

46. Australia

47. Summarizing
▪Development is an active process –
constantly breaking moulds
▪Complexity arises from the
interaction of individuals and their
environment
▪Functioning describes this complexity
and is an indicator of “lived health”
▪Developmental therapies and
supports promote functioning by
providing individualized approaches
and integrating/adapting environments
Hatching can take up to 36 hours
Breaking the mould can take
time and needs
CHANGEMAKERS !

48. Contact Us
canchild.ca
@canchild.bsky.social
905.525.9140 x27850
facebook.com/canchild.ca
[email protected]
@canchildcentre

49. Q & A Session
Q A
&
Thank You!