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Using the ICF framework for children, families
and carers to formulate health and
management goals in the context of autism
spectrum disorders
Olaf Kraus de Camargo
International Conference on Autism Acceptance and Neurodiversity
Ambedkar State Institute of Medical Sciences, India
April 1 & 2 2023
21st Century Paradigm
Shift
• World Health Organization (2001):
• “ICF respects the rights of every person and actively avoids labelling,
stigmatisation and discrimination.”
• 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 (2011):
• “Patients need to be involved in all aspects of research to ensure
questions and results are relevant”
ICF
 International Classification of Functioning, Disability and Health
(ICF)
 based on the bio-psycho-social model of health
 complementary to the diagnosis/es
 allows to describe what a person does within a certain context
"Disability is a difficulty in functioning at the body, person, or
societal levels, in one or more life domains, as experienced by
an individual with a health condition in interaction with
contextual factors.” (Leonardi et al., 2006. The definition of
disability: what is in a name? Lancet 368, 1219–1221.
https://doi.org/10.1016/S0140-6736(06)69498-1
Treatment Guidelines
Empowering parents is key!
Treatment -
Curing
The traditional dogma: “No treatment without a
diagnosis!”
Treatment needs to attack at the root of the problem
(etiology)
Linear thinking
Biomedical Model - linear
cell
tissue
organ
body
disease
Health
Drug or Therapy
Components of Health - non-
linear
Body Functions &
Structures
Activities Participation
Environmental
Factors
Personal Factors
Health Condition
ICF Framework
Body Structure &
Function
Activities
Participation
Environment
Personal Factors
Body Functions: The physiological functions of body systems (including psychological functions)
Body Structures: Anatomical parts of the body such as organs, limbs, and their components
Activities: The execution of a task or action by an individual.
Participation: Involvement in a life situation
Environmental factors: The physical, social and attitudinal environment in which people live and
conduct their lives; these are either barriers to or facilitators of the person’s functioning
Personal Factors: Internal personal factors which can include gender, age, education, profession,
past and current experience, character and other factors that influence how disability is experienced
by the individual
World Health Organization. (2001). International classification of functioning,
disability and health : ICF. World Health
Organization. https://apps.who.int/iris/handle/10665/42407
Components of Health - non-
linear
Body Functions &
Structures
Activities Participation
Environmental
Factors
Personal Factors
Health Condition
Components of Health - non-
linear
Body Functions &
Structures
Activities Participation
Environmental
Factors
Personal Factors
Health Condition
Components of Health - non-
linear
Body Functions &
Structures
Activities Participation
Environmental
Factors
Personal Factors
Health Condition
International Classification of
Functioning, Disability and Health - a
non-linear model
Body Functions &
Structures
Activities Participation
Environmental
Factors
Personal Factors
Health Condition
World Health Organization. (2001). International Classification of
Functioning, Disability and Health: ICF. Geneva, Switzerland: World
Health Organization.
Mosaic of Complexity:
Health Condition
(e.g., CP, ASD)
Body Structures
and Functions Activities Participation
Environmental
Factors
Personal
Factors
The ICF
World Health Organization. (2001). International classification of functioning,
disability and health : ICF. World Health
Organization. https://apps.who.int/iris/handle/10665/42407
“Including Axel”
https://youtu.be/LIYwTmUgrco
Treatment - Caring
Complex Chronic Conditions:
 Active participation of the patient/caregiver
 Collaboration
 Customization for different situations and life domains
 Continuity of care
Holistic view
Documentation
AXEL
ASD
Documentation
Reading, writing AAC
Dressing, taking the bus
Eating in the cafeteria
Visual
schedule,
Modeling by
other children
Express needs non-verbally AAC
none
none
Documentation
none
Get to know educational assistant
Sit beside classmate
Regular school attendance
Teach EA
Teach peers
Implement routine
none
Documentation
(+)Tablet with
software
Order product
Involve SLP
for
programming
(-) noise
(-) lights
(+) laminating strips
(+) attitudes of peers
(+) attitudes of school staff
(+) inclusive school
Allow
manipulating
strips
Documentation
1. Learning to read/type
2. Reduce aggression
Negative experience in previous school
Bilingual background
Latino identity
Implement AAC
Implement visuals
ICF & 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.
1 2
1
2
E
BodyStructure 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-wordsKnowledge 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.
F-Words
1 2
1
2
E
BodyStructure 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-wordsKnowledge 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.
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 downone goal for eachof 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!
F-Words
1 2
1
2
E
BodyStructure 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-wordsKnowledge 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.
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 downone goal for eachof 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!
Learn to read and type
To express needs and reduce aggression
Play basketball
Is his favorite sport and keeps him active
Play with laminating strips
Calms him down when overwhelmed
Tolerate closer physical proximity
He would like to have friends
College
Become as independent as possible
Setting Functional
Goals
 Chosen by the child/family: improve activities that are important
for the child
 Functional: goals that reflect real-life tasks – not sorting or
labeling for the sake of the skill
 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)
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
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
Q & A Session
Q A
&
Thank You!

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Using the ICF framework for children, families and carers to formulate health and management goals in the context of autism spectrum disorders

  • 1. Using the ICF framework for children, families and carers to formulate health and management goals in the context of autism spectrum disorders Olaf Kraus de Camargo International Conference on Autism Acceptance and Neurodiversity Ambedkar State Institute of Medical Sciences, India April 1 & 2 2023
  • 2. 21st Century Paradigm Shift • World Health Organization (2001): • “ICF respects the rights of every person and actively avoids labelling, stigmatisation and discrimination.” • 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 (2011): • “Patients need to be involved in all aspects of research to ensure questions and results are relevant”
  • 3. ICF  International Classification of Functioning, Disability and Health (ICF)  based on the bio-psycho-social model of health  complementary to the diagnosis/es  allows to describe what a person does within a certain context "Disability is a difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors.” (Leonardi et al., 2006. The definition of disability: what is in a name? Lancet 368, 1219–1221. https://doi.org/10.1016/S0140-6736(06)69498-1
  • 5. Treatment - Curing The traditional dogma: “No treatment without a diagnosis!” Treatment needs to attack at the root of the problem (etiology) Linear thinking
  • 6. Biomedical Model - linear cell tissue organ body disease Health Drug or Therapy
  • 7. Components of Health - non- linear Body Functions & Structures Activities Participation Environmental Factors Personal Factors Health Condition
  • 8. ICF Framework Body Structure & Function Activities Participation Environment Personal Factors Body Functions: The physiological functions of body systems (including psychological functions) Body Structures: Anatomical parts of the body such as organs, limbs, and their components Activities: The execution of a task or action by an individual. Participation: Involvement in a life situation Environmental factors: The physical, social and attitudinal environment in which people live and conduct their lives; these are either barriers to or facilitators of the person’s functioning Personal Factors: Internal personal factors which can include gender, age, education, profession, past and current experience, character and other factors that influence how disability is experienced by the individual World Health Organization. (2001). International classification of functioning, disability and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407
  • 9. Components of Health - non- linear Body Functions & Structures Activities Participation Environmental Factors Personal Factors Health Condition
  • 10. Components of Health - non- linear Body Functions & Structures Activities Participation Environmental Factors Personal Factors Health Condition
  • 11. Components of Health - non- linear Body Functions & Structures Activities Participation Environmental Factors Personal Factors Health Condition
  • 12. International Classification of Functioning, Disability and Health - a non-linear model Body Functions & Structures Activities Participation Environmental Factors Personal Factors Health Condition World Health Organization. (2001). International Classification of Functioning, Disability and Health: ICF. Geneva, Switzerland: World Health Organization.
  • 13. Mosaic of Complexity: Health Condition (e.g., CP, ASD) Body Structures and Functions Activities Participation Environmental Factors Personal Factors The ICF World Health Organization. (2001). International classification of functioning, disability and health : ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407
  • 15. Treatment - Caring Complex Chronic Conditions:  Active participation of the patient/caregiver  Collaboration  Customization for different situations and life domains  Continuity of care Holistic view
  • 17. Documentation Reading, writing AAC Dressing, taking the bus Eating in the cafeteria Visual schedule, Modeling by other children Express needs non-verbally AAC none none
  • 18. Documentation none Get to know educational assistant Sit beside classmate Regular school attendance Teach EA Teach peers Implement routine none
  • 19. Documentation (+)Tablet with software Order product Involve SLP for programming (-) noise (-) lights (+) laminating strips (+) attitudes of peers (+) attitudes of school staff (+) inclusive school Allow manipulating strips
  • 20. Documentation 1. Learning to read/type 2. Reduce aggression Negative experience in previous school Bilingual background Latino identity Implement AAC Implement visuals
  • 21. ICF & 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.
  • 22. 1 2 1 2 E BodyStructure 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-wordsKnowledge 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.
  • 23. F-Words 1 2 1 2 E BodyStructure 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-wordsKnowledge 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. 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 downone goal for eachof 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!
  • 24. F-Words 1 2 1 2 E BodyStructure 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-wordsKnowledge 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. 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 downone goal for eachof 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! Learn to read and type To express needs and reduce aggression Play basketball Is his favorite sport and keeps him active Play with laminating strips Calms him down when overwhelmed Tolerate closer physical proximity He would like to have friends College Become as independent as possible
  • 25. Setting Functional Goals  Chosen by the child/family: improve activities that are important for the child  Functional: goals that reflect real-life tasks – not sorting or labeling for the sake of the skill  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)
  • 26. 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
  • 27. 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
  • 28. Q & A Session Q A & Thank You!