Presentation at the 8th ICF Education International Symposium and 5th Neuro Socio Psycho Rehab Conference - 2022 in India An overview of current best practice and guidelines in treatment approaches for developmental disabilities and tools to implement a patient centred approach.

1. Childhood Disability Care in
the 21st Century
Olaf Kraus de Camargo
krausdc@mcmaster.ca

2. Developmental Paediatrics
§Principles
§ Developmental Perspective:
§ “signs and symptoms” are extremely variable and have different significance at
different ages
§ “learning” is a major component of development
§ development occurs always in a context
§ Transdisciplinary Competencies
§ Early Childhood Education, Occupational Therapy, Physical Therapy, Psychology,
Social Work, Speech and Language Therapy, etc.
§ Nursing, Nutrition
ØWorking together and learning from each other is central to
developmental paediatrics

3. Children,Youth and Families
§ United Nations' Convention on the Rights of Persons with
Disabilities (2006): “Children with disabilities have the right to express
their views freely on all matters affecting them.” (Art. 7)
§ Strategy for Patient Oriented Research:“Patients need to be involved in all
aspects of research to ensure questions and results are relevant” (CIHR)
§ World Health Organization:“ICF respects the rights of every person and
actively avoids labelling, stigmatisation and discrimination.”

4. Treatment Guidelines

5. Treatment Guidelines

6. Treatment Guidelines

7. Treatment Guidelines
Empowering parents is key!

8. Treatment Guidelines

9. Evidence-based Recommendations
ASD ID

10. Functional Approach
§ Focus on relevant activities for the daily participation
§ Empower children and families to choose an individualized approach to set
goals
§ Do NOT focus only on body functions and structures!

11. F-Words
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12. How the ICF relates to the life of children?
§ Body Functions and Structures: refers to everything that makes up their body and
makes it function. One way to relate to this is thinking about fitness.
§ Activities: refers to the things children do. All they do is a way of functioning
(playing, walking, communicating etc.)
§ Participation: refers to how children are involved in different life situations while
doing something. Children usually are involved with other kids, so a good term to
refer to participation is friendships
§ Environment: refers to what is around the child.The most important aspects
surrounding any child is their family
§ Personal Factors: refer to things that are unique and important to a child.They
can be summarized by everything that is fun.

13. The ICF Framework1 and the F-Words2
1
2
E
Body Structure and Function
veryone needs to stay fit and healthy both physically
and mentally. Help me find ways to keep fit.
Fitness
Activity
I might do things differently but I CAN do them.
How I do it is not important. Please let me try!
Functioning
Participation
Having friends is important. Please give me
opportunities to make friends.
Friends
Environmental Factors
My family knows me best and I trust them.
Listen to them. Talk to them. Hear them.
Respect them.
Family
Personal Factors
Life is about having fun. Please help me do
the activities that I find the most fun.
Fun
Future
I am growing up every day, so please find ways for me to participate and be included in my community.
For more information visit the F-words Knowledge Hub:
www.canchild.ca/f-words
) World Health Organization. (2001) International
Classification of Functioning, Disability and Health (ICF)
) Rosenbaum P & Gorter JW. (2012). The ‘F‐words’ in
childhood disability: I swear this is how we should
think! Child Care Health Dev; 38.

14. Assessing Concerns

15. Setting Functional Goals
§ Chosen by the child/family: improve activities that are important for
the child
§ Functional: goals that reflect real-life tasks – not strength, sensory
processing or range of motion
§ Specific: (SMART) – choose a short and realistic time-frame
§ Set as a Team: when more people are involved, all should be on-board
with the chosen goals (child & family are part of the team)

16. My F-words Goal Sheet
Today’s Date:
Name:
Instructions:
FUN:
Goal:
Why?!
FRIENDS:
Goal:
Why?!
FUTURE:
Goal:
Why?!
FUNCTIONING:
Goal:
Why?!
FAMILY:
Goal:
Why?!
FITNESS:
Goal:
Why?!
(Adapted from Fuller & Susini Goal Sheet, 2015)
Please use this form to write down one goal for each of the F-words – Functioning, Family,
Fitness, Fun, Friends & Future and explain why this goal is important to you. These can be goals you
would like to work on at home, in therapy, in school, and/or in the community. Together let’s work on
the goals that are meaningful to you!
The ICF Framework1 and the F-Words2
1
2
E
Body Structure and Function
veryone needs to stay fit and healthy both physically
and mentally. Help me find ways to keep fit.
Fitness
Activity
I might do things differently but I CAN do them.
How I do it is not important. Please let me try!
Functioning
Participation
Having friends is important. Please give me
opportunities to make friends.
Friends
Environmental Factors
My family knows me best and I trust them.
Listen to them. Talk to them. Hear them.
Respect them.
Family
Personal Factors
Life is about having fun. Please help me do
the activities that I find the most fun.
Fun
Future
I am growing up every day, so please find ways for me to participate and be included in my community.
For more information visit the F-words Knowledge Hub:
www.canchild.ca/f-words
) World Health Organization. (2001) International
Classification of Functioning, Disability and Health (ICF)
) Rosenbaum P & Gorter JW. (2012). The ‘F‐words’ in
childhood disability: I swear this is how we should
think! Child Care Health Dev; 38.

17. • Brain (Cognition, motor control)
• Articulation
• Hand use
• Expressing needs verbally
• Lack of knowledge of family how to introduce assistive devices
• Curious
• Fear of health professionals
Diagnosis: Kernicterus
Goal Setting

18. F-words into Policy
*MCCSS Ministry of Children, Community and Social Services (2022). Retrieved from
https://files.ontario.ca/mccss-smart-start-hubs-policy-and-practice-guidelines-en-2022-05-02.pdf

19. Designing Service Models
§ Collaboration among all stakeholders
§ Needs-based
§ Participation-oriented

20. What are the Advantages of Tiered Models?
In a tiered model, the therapist:
§ can be the point of first contact which can negate the need for
lengthy and resource-intensive referral mechanisms before the child
is able to receive support.
§ works with educators and whole classrooms of children in schools, providing
support that increases all children’s participation and achievement.
§ provides service without the need for diagnosis of health care
conditions before supports are able to be put in place.

21. Summary
§ Rehabilitation in the 21st century is rights-based
§ Current guidelines recommend a focus on meaningful activities
§ Patients and families are partners in decision-making
§ Systems and Services need to be designed to increase participation
for all children

22. Contact Us
canchild.ca
@canchild_ca
905.525.9140 x27850
facebook.com/canchild.ca
canchild@mcmaster.ca
Institute for Applied Health
Sciences, McMaster University
1400 Main Street W., Room 408
Hamilton, ON, Canada

23. Q & A Session
Q A
&
ThankYou!

24. References
§ Cahill, P. T., Ng, S., Dix, L., Ferro, M. A., Turkstra, L., & Campbell, W. N. (2022). Outcomes management practices in tiered school-based speech-
language therapy: A Canadian example. Int J Lang Commun Disord. https://doi.org/10.1111/1460-6984.12822
§ Cheng, W. M., Smith, T. B., Butler, M., Taylor, T. M., & Clayton, D. (2022). Effects of Parent-Implemented Interventions on Outcomes of Children
with Autism: A Meta-Analysis. J Autism Dev Disord. https://doi.org/10.1007/s10803-022-05688-8
§ Demont, A., Gedda, M., Lager, C., de Lattre, C., Gary, Y., Keroulle, E., Feuillerat, B., Caudan, H., Sancelme, Z., Isapof, A., Viehweger, E., Chatelin, M.,
Hochard, M., Boivin, J., Vurpillat, P., Genes, N., de Boissezon, X., Fontaine, A., & Brochard, S. (2022). Evidence-based, Implementable Motor
Rehabilitation Guidelines for Individuals With Cerebral Palsy. Neurology. https://doi.org/10.1212/WNL.0000000000200936
§ Jackman, M., Sakzewski, L., Morgan, C., Boyd, R. N., Brennan, S. E., Langdon, K., Toovey, R. A. M., Greaves, S., Thorley, M., & Novak, I. (2022).
Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline. Dev Med
Child Neurol, 64(5), 536-549. https://doi.org/10.1111/dmcn.15055
§ Kraus de Camargo, O., Simon, L., Ronen, G. M., & Rosenbaum, P. L. (2019). ICF - A Hands-on Approach for Clinicians and Families. MacKeith Press.
§ Novak, I., McIntyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., Stumbles, E., Wilson, S. A., & Goldsmith, S. (2013). A systematic review of
interventions for children with cerebral palsy: state of the evidence. Dev Med Child Neurol, 55(10), 885-910. https://doi.org/10.1111/dmcn.12246
§ Ritzema, A. M., Lach, L. M., Rosenbaum, P., & Nicholas, D. (2016). About my Child: measuring 'Complexity' in neurodisability. Evidence of reliability
and validity. Child Care Health Dev, 42(3), 402-409. https://doi.org/10.1111/cch.12326
§ Rosenbaum, P. (2009). Cerebral palsy in the 21st century: is there anything left to say? [Historical Article]. Neuropediatrics, 40(2), 56-60.
https://doi.org/10.1055/s-0029-1234104
§ Rosenbaum, P., & Gorter, J. W. (2012). The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health Dev, 38(4), 457-
463. https://doi.org/10.1111/j.1365-2214.2011.01338.x
§ VanderKaay, S., Dix, L., Rivard, L., Missiuna, C., Ng, S., Pollock, N., Whalen, S. S., Eisen, I., Kyte, C., Phoenix, M., Bennett, S., Specht, J., Kennedy, J.,
McCauley, D., & Campbell, W. (2021). Tiered Approaches to Rehabilitation Services in Education Settings: Towards Developing an Explanatory
Programme Theory. International Journal of Disability, Development and Education, 1-22. https://doi.org/10.1080/1034912x.2021.1895975
§ Wickstrom, J., Dell'Armo, K., Salzman, E., Hooker, J. L., Delehanty, A., Bishop, S., Tasse, M. J., Wetherby, A. M., Piergies, A. M. H., Damiano, D.,
Rauch, A., & Thurm, A. (2021). Systematic Review: Recommendations for Rehabilitation in ASD and ID From Clinical Practice Guidelines. Arch
Rehabil Res Clin Transl, 3(3), 100140. https://doi.org/10.1016/j.arrct.2021.100140