Diagnosis or functional approach: IS THIS EVEN A SENSIBLE QUESTION

Exploring the issues with a multidimensional perspective.

 

In the field of developmental disability, considerable debate and tension remain regarding the best approaches to thinking about how engage with and serve children with developmental challenges and their families. In many places, service eligibility is based on diagnosis. This approach puts pressure on families to get a diagnosis, and on service providers to make a diagnosis. Among the implications of this challenge are what can become a ‘diagnostic odyssey’ for many families, and the moral and ethical dilemmas for service providers to ‘make up’ a diagnosis in order to support the family to access services.

At the same time, people in our field recognize that there may be clinical, political, ethical, moral and resource implications of this dilemma, and most of us – whatever our personal views – are frequently involved in discussions and debates about this matter.

Peter Rosenbaum, Arnab Seal, Jenny Carroll and Bernadette Gillick are discussing this issue in the video below.

World CP day save the day image

24 hour virtual Listening and Sharing sessions for World CP day 2021

What is this 24 hour session about?

By focusing just on diagnosis, we are missing vital information which we ordinarily think about as clinicians of any sort when we are asked to work with a child and families. We have a long tradition of thinking diagnostically and functionally (or categorically). The idea of focusing just on diagnosis or function is clearly a limitation and we believe we need to expand our thinking.

This 24 hour session provides an opportunity for health professionals working in the field of childhood disability, parents and experiential experts across the globe to come together and ask one another “How can we best benefit combining two approaches (Functional and Diagnosis thinking)? What are we missing?” “(How) can we integrate and expand both approaches in order to cover topics like:  bodily functions, mental wellbeing, meaning, quality of life, participating, daily functioning, psychological, social, pedagogical and spiritual aspects?”

Enjoy recorded sessions where health workers and families are sharing their experiences, challenges and innovations. These sessions are recorded on 6th October 2021 every hour around the globe.

Australia

Diagnosis vs. Functional Thinking

Australasian Academy of Cerebral Palsy and Developmental Medicine

Speakers: 

  • Professor Christine Imms (Occupational Therapist and Apex Chair of Neurodevelopment Disability, MCRI & Uni Melbourne)
  • Dr Mary-Clare Waugh (Paediatric Rehabilitation Physician, Children’s Hospital Westmead)
  • Dr Gordon Baike (Paediatrician, Royal Children’s Hospital)
  • John Carey (Physiotherapist, PhD Candidate Uni Melbourne)
  • The session was facilitated by: Professor Alicia Spittle

Summary

This session, held on World Cerebral Palsy Day involved a panel of health professionals and consumers discussing “diagnosis vs functional thinking” in how we promote excellence in clinical care and research for children and adults with cerebral palsy and developmental conditions.

Georgia

Goal setting strategy and Early Intervention

Georgian Association of Child Neurology and Neurosurgery  (GACNN)

Speakers: 

  • Nana Tatishvili, Head of Neuroscience Department M.Iashvili  CCH, President of Georgian Association of Child Neurology and Neurosurgery
  • Sofia Tatishvili, Child neurologist, PHD, Head of Neurorehabilitation department
  • Tamar Diakonidze, Physical Therapist
  • Zaza Poladishvili, Physical Therapist

Summary

During the session the panellists discussed the importance of early detection and early intervention in infants at risk of cerebral palsy.

Panellists also shared how the Georgian multidisciplinary team set functional goals in clinical practice, using the ICF frame to enhance the participation of children with CP and their families.

India

Diagnosis vs. Functional Thinking

Indian Academy of Cerebral Palsy

Facilitators: 

  • Prof. Dr. Sadasivan Sitaraman

Summary

6 panelist exploring the issues with a multidimensional perspective, each one will speak for 7min ,will be followed by questions.

Ireland

Diagnosis vs. Functional Thinking

Irish Academy of Childhood Disability

Speakers: 

  • Margaret McGrath,
  • Karen Lennon,
  • Mairead Dempsey

Israel

Revisiting Core issues in Intervention, parental involvement mainstreaming and child benefits mainstreaming and National Insurance Benefits

Ministry of Health Child Development Center

Facilitators: 

  • Dr .Tali Ashkenazi PT;
  • Dr. Sarah Capelovitch PT

Summary

Access to early intervention BEFORE a diagnosis is made, based on infants FUNCTIONALITY in all domains. Communication abilities overriding all as a basic human right. Specific realistic GOAL setting with parents depending on parents emotional state of acceptance and understanding/denial etc. State INSURANCE facilitating process for benefits based on FUNCTION. Service delivered after assessment by multidisciplinary team). Mainstreaming of children, their participation and integration in community depends NOT on their functionality but on SOCIETAL acceptance as equals, not as individuals with diminished abilities. Main issue- Normality is COMPLEX and resides in societal and governmental understanding.

Philippines

A Parent’s Journey: A Celebration of Life

Speakers: 

  •  Ms. Rhoda May Lim, Parent Partner
  • Dr. Francis Xavier Dimalanta, MD Developmental Pediatrician
  • Dr. Hosanna Say-Camacho, PT, DPT
  • Avry Umali Andal, OTR/L, OTRP

Summary

We are excited to bring you a “Celebration of Life: A Parent’s Journey”. We will go on a journey with one of our parents, in sharing her and her daughter’s incredible story from birth to the present, including the role and inputs from their Developmental Pediatrician, Physical Therapist, and Occupational Therapist, as part of the journey.

Poland

Functional approach in rehabilitation as a way to autonomy (self-reliance, independence, safe future)

Polish Association for Persons with Intellectual Disability, Polish Academy of Childhood Disability

Speakers: 

    • Magdalena Chrościńska – Krawczyk,
    • Joanna Cwojdzińska,
    • Katarzyna Krus-Kubaszewska,
    • Karol Łukasiewicz,
    • Radosław Piotrowicz,
    • Paweł Wiktor,
    • Dominika Zawadzka
    • Katarzyna Świeczkowska

Summary

During the session the panelists, a doctor, a PT, an educator, an OT, two parents and a representative of a non – governmental organization from Poland will discuss the meaning of the 6 F-Words in rehabilitation of a child with disability. How the biopsychosocial approach changes the way we support a child with disability and their family.

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Moderator – Katarzyna Świeczkowska (educator and parent)

  1. Fitness – Magdalena Chrościńska-Krawczyk (neurologist)

What is the meaning of the medical diagnosis in the biopsychosocial approach? How to avoid seeing just limitations and how to introduce strengths based approach in the physicians work? How to build partnership between physicians and other professionals, how to build partnership between physicians and parents? How to inform parents about diagnosis using biopsychosocial approach?

  1. Function – Paweł Wiktor (PT) Function

If PTs are not to treat children, then what are they supposed to do? What are their goals in the biopsychsocial approach? Do they need some extra skills? Should they stop treating children?

  1. Friends, Participation – Radosław Piotrowicz (educator)

What is participation? Facilitators and barriers for participation. How can we promote participation? Participation as the main goal of our work for a child and his/her family.

  1. Fun, personal and environmental factors – Dominika Zawadzka (OT)

Why are personal factors important in delivering support? How can we make therapies pleasant for a child? How can we change a child’s environment to make it more friendly and to improve child’s and family’s quality of life?

  1. Family – Katarzyna Krus-Kubaczewska (parent), Karol Łukasiewicz (parent)

How to involve family in what we professionals do for a child? Do we know how to practise family centred approach? How can we work on common goals? Can we see families’ strengths? Do we build our support on families” strengths? How can we build professionals – parents partnership (barriers, facilitators)?

  1. Future – Joanna Cwojdzińska ( non-governmental organization, parent)

When should we start talking about future? What might be the child’s and family’s needs concerning future? What is possible in the local community (supported employment, sheltered housing etc.), what services are available? Do we and how do we talk to parents about their child’s future.

Singapore

Diagnosis vs Function – Cerebral Palsy … When it is not what it seems

Khoo Teck Puat National University Children’s Medical Institute, National University Hospital of Singapore

Speakers: 

    • Associate Prof Stacey Tay – Senior Consultant Paediatric Neurologist
    • Mr S Chandrasekaran – Senior Physiotherapist
    • Mr CK Song – Parent

Summary

Diagnosis vs function. From a diagnosis, we have an idea of the limitations of body structure and function on inclusion and participation. But what if the diagnosis may not be what it seems? There is a need for close collaboration with care providers to pick up CP mimics early to optimize management.

South Africa

Towards holistic assessment of the child with autism

University of Cape Town, South Africa

Speaker: 

    • Prof Petrus J de Vries, Centre for Autism Research in Africa (CARA)

Summary

In clinical practice we are all aware of the heterogeneity of autism, and we know that an assessment that leads to a simple categorical autism YES/NO conclusion has very limited benefit for intervention planning. Here we will discuss principles of a comprehensive assessment across different levels of needs, including the behavioural, psychiatric, intellectual, academic, neuropsychological, psychosocial and physical.

Sri Lanka

Symptomatic and Functional Approach for Developmental Disabilities

MJF Charitable Foundation

Speaker: 

    • Gopi Kitnasamy, Head of Rehabilitation Services
      MJF Charitable Foundation

Summary

In the field of developmental disabilities, there is always debate regarding the best approaches to support and help children with developmental challenges and their families. By focusing just on diagnosis, we tend to miss important information and sometimes this end in misdiagnosis or making up a diagnosis.

Taiwan

Application of ICF framework in diagnosis and participation-based services for children/youth with special needs

Speakers: 

    • Laura Yeo – Senior physiotherapist (introduction)
    • Hua-Fang (Lily) Liao – Senior physiotherapist
    • Wang-Tso Lee – Pediatric neurologist
    • Sung-Hui Tseng – Pediatric physiatrist 
    • Wen-Che Tsai – Pediatric psychiatrist
    • Chao-Ying Chen – Physiotherapy professor

One ICF-educator/pediatric physiotherapist and three medical specialists will introduce how Taiwan applies the ICF framework to enhance the participation of children with special needs and their families in early diagnoses and individualized service plans or parent group training. The presentations is in Mandarin with Chinese or English ppt.

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One ICF educator / pediatric physiotherapist and three medical doctor specialists will give a one-hour presentation to introduce how Taiwan apply ICF to enhance the participation of children with special needs and their families in the early diagnosis and individualized service plan or parent group training. Dr. Wang-Tso Lee, a pediatric neurologist, will introduce diagnostic and functional assessment for children with disabilities in Taiwan. Dr. Sung-Hui Tseng, a pediatric physiatrist, will present the topic of applying ICF diagnosis, assessment and early intervention services in medical setting. Dr. Wen-Che Tsai, a child and adolescent psychiatrist will mention the development and outcome of the WHO-AS CST Taiwan Promotion Project. Hua-Fang Liao, an ICF educator and pediatric physical therapist, will introduce ICF application on the evaluation of disability eligibility determination and welfare and services provision. The presenters will give speech in Mandarin with Chinese or English ppt. All the presenters can understand both English and Chinese. We also have two bilingual moderators, Chao-Ying Chen (Pediatric physical therapist) and Laura Yeo Liu-Ching (South Asia Convener of the IAACD Listening & Sharing session 2021) to facilitate communication during the discussion section. 

The Netherlands

Functional vs. Diagnosis thinking: Partnership for children with disabilities

Dutch Academy of Childhood Disability

Speakers: 

    • Dr. M.W.Alsem,
    • Dr. M.Bult,
    • M. Willems

Summary

In this session we will share our experiences in working together with parents, patients and patient organization in daily care and research in paediatric rehabilitation. Working together is indispensable if we want to optimize the functioning of children with disabilities, in order to optimize participation and development of these children and their families. This session is in English.

Turkey

Diagnosis vs. Functional Thinking

University, Faculty of Physiotherapy and Rehabilitation

Facilitators: 

    • Prof. Mintaze Kerem Günel (Moderator),
    • Duru Edibe Sinem Ersoy (parent),
    • Duru Candansayar,
    • Meltem Yazıcı Gülay (Physiotherapist),
    • Sedef Karayazgan Şahin (Occupational Therapist),
    • Ayşın Noyan Erbaş (Speech and Language Therapist)

Summary

Rehabilitation processes in Turkey and in the World will be discuss in terms of F-words with rehabilitation professionals as physiotherapist, occupational therapist, speech and language therapist as well as child with cerebral palsy and family.

United States of America

Diagnosis vs. Functional Thinking: Best of Both Worlds

American Academy of Cerebral Palsy and Developmental Medicine

Facilitators: 

    • Colleen Peyton,
    • Theresa Moulton,
    • Michael Msall

Summary

During the session the panelists, a MD, PT, and parent will discuss the balance between consideration of diagnosis and participation.