Keynote Presentations

Good, Better, Best!

Margaret Mayston

Good, Better, Best!

The past year for most has provoked thought about what really matters in life and work, and a need to adapt to changing circumstances to adopt a new so called ‘normal’ way of living- whatever normal is! The latter question is commonly queried in scientific circles, and in the field of neurodisability.

The last century has witnessed a great deal of change in all aspects of life. In the early years of intervention for people with cerebral palsy, most health professionals approached intervention with a view that the goal for the person was to make the best of their residual function following the CNS lesion, a compensatory mostly motor-based approach, prescribed by the health professional. The next phase in intervention was to enable the person to be as normal as possible, (not ‘normal’ as some seemed to suggest; Rosenbaum & Gorter, 2011) with families taking more of an active role in the process or articulating and achieving set goals. Currently it is hoped that there is a more balanced approach of enabling the individual to participate in life, to the best of their ability based on what their damaged systems will allow, focusing on what they want and can achieve, as a collaboration between the person/family and the team of health professionals.

Over the last 40 plus years, the understanding of the pathophysiology underlying neurodisability has progressed, the repertoire of interventions has exploded, tools to measure function and plot progress have been emerging, and the revised International Classification for Functioning Disability and Health (ICF; WHO, 2000; 2007) has provided a framework for intervention and research focused on participation in everyday life. What do all these developments mean for the future of intervention for people with neurodisability? How can the challenge to provide evidence-based intervention be effectively addressed? How can the best be achieved? This is a journey, not a destination, for which there have been, and will continue to be, many important turning points. The challenge is ongoing.

This presentation is a reflection on the development of intervention for people with neurodisability, in particular those with cerebral palsy, based on personal experience, scientific knowledge and debate. Despite progress made in many spheres of understanding, I acknowledge that my most important teachers have been the children and their families, and I thank them for it!

The Importance of Getting it Right

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The Importance of Getting it Right

Details coming soon

Change? Hooray… well, wait a minute… actually, no thanks, I’m good!

Peter Rosenbaum

Change? Hooray… well, wait a minute… actually, no thanks, I’m good!

“The only constant in life is change” – Heraclitus.

Change is usually experienced with a combination of excitement (“What’s new and different?”) and dread (“What does this new way of thinking/talking/doing mean for me?”). These mixed reactions are no less common in the ever-changing field of ‘childhood disability’. Professionals working in childhood disability – whether providing service and education, or exploring issues with health services research – are in a rapidly evolving field. This era of expansion and change can be threatening, and lead people to become entrenched, skeptical, perhaps even cynical, and resistant to evolution in our spheres of interest.

With my CanChild colleagues I have been privileged to be part of a 30-year journey of inquiry, discovery, knowledge translation and promotion of the uptake of new ideas. In this talk I would like to share some of the lessons we have learned – and continue to learn every day as we teach and present our ideas. I believe that we have an ever-improving understanding of how to promote and support change while respecting the tensions that accompany it.

It is my hope that this talk, and the discussion it encourages, will help people think positively about change and accept it in a new (changed) way!

Are you dissatisfied enough? Leveraging change for better outcomes in child-onset disability

christine-imms

Are you dissatisfied enough? Leveraging change for better outcomes in child-onset disability

The World Health Organisation published the International Classification of Functioning Disability and Health (ICF) in 2001 and in that framework defined participation as involvement in a life situation. Participation has been highlighted as both a determinant of health and a key outcome of health and social services. Publication of the ICF has been credited with heralding a paradigm shift – especially in rehabilitation. So, what should we expect 20 years later? What do we know now, that we did not know then, and how are we using that knowledge?

In this presentation, I aim challenge your satisfaction with contemporary practice in child-onset disability, and present principles and practices to advance participation-focused knowledge use. The process of translating evidence-to-practice remains too slow and we need to increase the pace of change. Are you ready?

We speak PODD… the journey of a family using Augmentative and Alternative Communication (AAC)

We speak PODD… the journey of a family using Augmentative and Alternative Communication (AAC)

There will be various presentations from Family members, and Young people from Kids Plus with lived experience of disability.  Presentations will include their perspectives as a recipient of services on:

  • How have they and their attitudes changed over the years
  • In what ways do service provides (and perhaps the community more broadly) need to change

We Speak PODD

One family will share their reflections using their journey of using Augmentative and Alternative Communication (AAC)

In this presentation we explore the journey of Kylie’s son Lachie starting and excelling in his learning and use of AAC and specifically PODD communication system, along with the lived experiences of Noah.

Exploring how finding your support network professionally and socially will enhance the learning and adoption of PODD.  Going through the stages of use from identifying the right program, to practice, integration and school readiness.

Changemakers: Leading Change

kelly reynolds

Changemakers: Leading Change

Many of us desire change, big or small, however the process of being a ChangeMaker and ‘making it happen’ has many layers of complexity.

For change to be truly successful and embraced we need to inspire more people to join us on the dance floor.  Community Paediatric practice is a web of interactions with others and we need to view change as a social phenomenon.  Understanding change will enable practitioners, managers, service users and organisations to lead change following an ongoing and fluid process.

Action Research: Practitioners and Researchers Building the Evidence-base Together

Prof Angela Drew

Action Research: Practitioners and Researchers Building the Evidence-base Together

This keynote presentation will describe Action Research through which practitioners and researchers together build an evidence-base.

Action research as a key participatory method providing a model to structure engagement between researchers and practitioners to enable the production of empirically informed practice resources and/or approaches. Action Research is a relational and potentially transformational approach which is deeply grounded in the conceptual, political and practical relations between researchers, practitioners and those whose lives they seek to enhance. Two examples of this methodological approach will be presented demonstrating three interlinked conceptual foundations: knowledge translation, praxis and action research, which together inform a framework for research to practice.

These three components provide a critically reflective model to increase the integrity, uptake and applicability of research for end users.

Workshops

Changing Infant Outcomes

BabySMART: Changing to a Relational Approach for Early Detection

kelly reynolds

BabySMART: Changing to a Relational Approach for Early Detection

BabySMART (Sensory Motor Active Responsive Timely) is an advanced Developmental Surveillance and Early Detection program at Kids Plus. It has embraced the recent advances and consensus about early detection and follows a best practice protocol for assessment and monitoring. This outlines the ‘What’ of the program but doesn’t explore the ‘How’.

The essence of BabySMART is integrating the technical protocols alongside a relational approach to ensure we establish trusting, quality relationships with families. This workshop will explore the key elements of this relational approach, which is often missing in follow-up programs, to change the experiences for families from a technical encounter to one that meets their emotional and psychological needs.

Coordinated multi disciplinary care for neonatal follow up and developmental early intervention.

Dr Emily Reid

Coordinated multi disciplinary care for neonatal follow up and developmental early intervention.

This presentation will reflect on the implementation of a new focused neonatal complex care follow-up clinic for infants at higher risk of health and developmental complications from prematurity and birth complications. This clinic maintains links with community partners Kids Plus Foundation to assist in joint care, where their BabySMART provides early intervention supports. The joint approach of both programs hopes to reduce challenges for families, and reduce the impact of complications these babies and their families may face.

Whakawhanaunga[1] / Relationships: The ‘active ingredient’ in Child Development

danielle-atkins

Whakawhanaunga[1] / Relationships: The ‘active ingredient’ in Child Development

The brain’s most primitive role is to ensure survival. Infants respond to perceived or actual threats that trigger chemical, structural and behavioural changes, regardless of intention or medical necessity. Early adversity disrupts brain development by limiting experience-expectant plasticity, this changes brain structure and derails development and impacts on long-term health and wellbeing. The primary source of infant trauma in the SCBU/NICU is maternal separation. Maternal separation and socio-emotional neglect alter brain structures responsible for processing stress and threat and has been linked to neurodevelopmental and later neuropsychiatric disorders in adulthood. However, brain plasticity or the way the brain experiences development can be leveraged to improve outcomes.

This presentation will focus on the integration of a relationship-based, trauma-informed approach to the developmental follow up of preterm and high-risk infants and their families in the neonatal nursery and community. Attending to and building the capabilities of parents / carers and health professionals who care for and support infants, to provide responsive, positive, warm and sensitive parenting and therapeutic relationships can nurture the development of resilience; associated with better developmental outcomes.

[1] to have a relationship / having good relations, get to know one another, get along with, nurturing good relations (Maori Dictionary: https://maoridictionary.co.nz)

Small Talk: Speech, Language, and Feeding in Children Born Preterm

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Small Talk: Speech, Language, and Feeding in Children Born Preterm

Children born early (before 37 weeks) can face a range of challenges, and are at higher risk of developmental concerns. This includes a higher risk of feeding and communication challenges.

Dr Sanchez will discuss what these challenges look like, and why they occur; as well as ways to change outcomes for children born early for the better

Changing Our Relationships

The F-Words Life Wheel: Bringing a Bio=Psychosocial Approach and Coaching Together to Engage Families of Children with Developmental Needs

Arul Hamil & Lucy

The F-Words Life Wheel: Bringing a Bio=Psychosocial Approach and Coaching Together to Engage Families of Children with Developmental Needs

Lucy and Arul will share some of the frameworks and approaches that underpin their practice and way of thinking.

Reflecting on the worldwide influences such as the Sustainable Development goals (United Nations), World Health Organisation, International Classification of Functioning, Disability and Health (ICF), CanChild F-Words for Childhood (Dr. Peter Rosenbaum and Dr Jan Willem Gorter) and Coaching approaches and how these influence our way of thinking?

The F-Words from CanChild provide a meaningful language to facilitate conversations and interactions with children and families, which shifts the focus from a medical model to a biomedical model of care, focussing on occupation and participation. The F-words Life Wheel uses the F-Words and coaching models to form a connection with families, develop productive and trusting partnerships that empower families and build capacity. It helps to establish what is happening for the child and family right now, what is important and helps envisage goals for the future that are important to children and their families. They will explain how it can provide a voice for both children and their families. This is particularly pertinent during this changing climate, given that children and families’ perspectives and capacities are changing daily. The medical profession have textbooks and families have stories. How do we listen to the child and family’s story? and how do we empower families on their own journey without throwing out the textbooks or our clinical reasoning?

Changing drivers to change lives

Bridget O'Connor

Changing drivers to change lives

Assessment is fundamental to all the health care professions, with individual assessment skills honed over time.

Assessment is traditionally driven by the health care professional – observations made, information gathered, specific tests and tools applied, and judgements made about diagnosis, progress, and prognosis. But what does this mean for family well-being in the presence of childhood complexity? Can changing how assessment happens be a changemaker for families… and health care professionals?

How can ECI professionals improve the attachment security of children with a disability or developmental delay?

stacey alexander

How can ECI professionals improve the attachment security of children with a disability or developmental delay?

Secure attachment is beneficial to the development of all children. Children with a disability or developmental delay are significantly less likely to develop a secure attachment. Early Childhood Intervention (ECI) professionals have the opportunity to support the development of secure attachment between the children they are working with and their parents or caregivers but most have not learnt about this in their undergraduate training.

The presenter has undertaken mixed methods research to explore how ECI professionals can improve the attachment security of the children they work with and will share her findings in this interactive workshop.

Lived experiences of disability reflections on how we have changed through the journey, and what changes we would like to see from service providers

Lived experiences of disability reflections on how we have changed through the journey, and what changes we would like to see from service providers

There will be various presentations from Family members, and Young people from Kids Plus with lived experience of disability.  Presentations will include their perspectives as a recipient of services on:

  • How have they and their attitudes changed over the years
  • In what ways do service provides (and perhaps the community more broadly) need to change

We Speak PODD

One family will share their reflections using their journey of using Augmentative and Alternative Communication (AAC)

In this presentation we explore the journey of Kylie’s son Lachie starting and excelling in his learning and use of AAC and specifically PODD communication system, along with the lived experiences of Noah.

 

Exploring how finding your support network professionally and socially will enhance the learning and adoption of PODD.  Going through the stages of use from identifying the right program, to practice, integration and school readiness.

Changing the Therapy Agenda

Early Years to Young Adulthood: Self-advocacy and Autonomous Communication

Early Years to Young Adulthood: Self-advocacy and Autonomous Communication

You can make a change now to how a young person values and views their voice. Learn more about how you can support and increase a young person’s ability to participate in all environments with autonomy, choice, and self-determination.  Self-advocacy become especially critical for clients who have complex communication needs (CCN). Hear from Penny who shares her lived experience. She will discuss her thoughts about developing her voice using AAC and what she wishes health professionals knew.

Participation in Sport and Recreation; therapy, community and competition. 

tanya-rachel

Participation in Sport and Recreation; therapy, community and competition. 

This workshop will highlight the importance of participation in sports and recreation for children with disabilities.

The panel will discuss how therapists can support their clients to achieve their sporting goals.  This may be by providing skills-based training, by supporting them to find the most appropriate sporting option or by assisting them to be classified for competition.

The ultimate goal is for children to be happily engaged and succeeding in sports and recreation, whether at a grass-roots level or an elite Paralympic Games.

Riding the Wave of Change

Riding the Wave of Change

Dynamic Interactions

Thomas Banks Quest for Love – Documentary (now available on Stan)

Thomas-Banks

Thomas Banks Quest for Love – Documentary (now available on Stan)

At Changemakers 2021, Thomas shares with you his experience of over 6 years writing and developing his one man play, and his story that is documented in Thomas Banks Quest for Love.

“Thomas is a young, gay playwright with cerebral palsy on a quest to find true love; he struggles to find someone who will commit, and looks for love in all the wrong places, crossing many hurdles: will he learn to love himself by opening night?”

Building an AAConnect™ community.

Jenna O'Brien

Building an AAConnect™ community.

Building an AAConnect™ community.
Kids Plus are passionate about delivering targeted intervention to support clients to achieve the most effective communication to maximize potential and enhance their quality of life. In some cases, this involves the use of high-tech Alternative and Augmentative Communication (AAC) options.
But, maybe there’s another piece to the puzzle; the real transformation for these clients comes when you inform and influence their unique environments. We will explore the impact of education and training, changing attitudes, and developing advocacy skills in the important people around the client through our AAConnect™ program.

Enabling participation in activities of daily living: supporting non-ambulant children with cerebral palsy to be involved in daily routines.

Robyn Heesh

Enabling participation in activities of daily living: supporting non-ambulant children with cerebral palsy to be involved in daily routines.

Participation is comprised of two essential elements: attendance (defined as ‘being there’ in the situation) and involvement (defined as the experience while attending). According to the family of Participation Related Constructs (fPRC), participation occurs through transactional processes among the person in context. When aiming to optimise participation outcomes, most research has focused on increasing attendance at discretionary (e.g., leisure) or mandatory (e.g. school) activities. More recently, focus has turned to improving our understanding of the experience of involvement, although this remains a key gap in our knowledge. In particular, we know little about the transactions that occur between children and carers in the context of daily life that influence involvement.

In this workshop we focus on the transactions that occur in daily routines – that is those activities that must occur every day – thus participation ‘attendance’ is not really in question. Participation involvement, is however.  To address the learning outcomes, participants will engage with material about the fPRC, and the Child Active Routines (CAR) framework that describes how children with cerebral palsy classified at GMFCS Level IV or V and their carers negotiate daily routines.

The CAR framework aims to provide a practical frame work to focus on the abilities of children with CP at GMFCS IV&V. It  provides a framework to support families and therapists to derive goals for children that are relevant to everyday life and therefore can be practiced and used in everyday life thus building capacity of the child over their lifespan.

The framework proposes how to support building the child’s capacity so skills that are  useful in the transactions that occur between carers and children in everyday routines can be practiced and further developed in therapy sessions, at school and in the community.

Interactive Element

The workshop will be presented in three parts, each of which will include power-point presentation and audience active involvement: (1) the fPRC will be used to identify key transactional elements that need to be considered when promoting participation; (2)  video-recordings of children and carers working together will be used to demonstrate and practice undertaking structured observations of participation transactions; (3) the CAR framework will be introduced and used to work through case-study material in small groups, followed by large group discussion.

Think Tank: Becoming a Changemaker

Think Tank: Becoming a Changemaker

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