Perspectives on children’s
physiotherapy services and
DisabilityCare Australia
Lorraine Sheppard
Sophie Lefmann
Michael Crowe
May 2013
Perspectives on children’s physiotherapy services and DisabilityCare Australia
Lorraine Sheppard, Prof
Sophie Lefmann, Dr
Michael Crowe, Dr
May 2013
With the assistance of
Nicolle Macaitis
Bev Gaughwin
School of Health Sciences
University of South Australia
North Terrace, Adelaide, SA 5000
Phone (08) 8302 2425
http://www.unisa.edu.au/health-sciences
Funding
This report was funded by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA),
National Disability Insurance Scheme, Practical Design Fund.
Disclaimer
The practical ideas and recommendations from this research were developed and reported specifically for the Department
of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), and DisabilityCare Australia. This report is not
intended to act as a consultation paper for other professional or organisational bodies. Ideas and recommendations
presented by participants and study authors have not been independently verified or applied at the time of submission.
Targeted feasibility and exploration studies into appropriate uses of the practical ideas should be considered further with
specific professional or organisational groups or institutions.
DisabilityCare Australia – Practical Design Fund
Perspectives on children’s physiotherapy services
Contents
Executive summary ................................................................................................................................. 3
Glossary ................................................................................................................................................... 6
Tables ...................................................................................................................................................... 8
Acknowledgement................................................................................................................................... 8
SECTION 1 – BACKGROUND ...................................................................................................... 9
1. Introduction......................................................................................................................................... 9
2. Literature review ............................................................................................................................... 12
2.1. Personalisation ..................................................................................................................... 12
2.2. Limits of personalisation ...................................................................................................... 14
2.2.1. Agency issues .......................................................................................................... 14
2.2.2. Adoption ................................................................................................................. 15
2.3. Empowerment and paediatric physiotherapy practice ....................................................... 16
2.4. Local area co-ordination ...................................................................................................... 18
2.5. Allied health workforce issues ............................................................................................. 21
2.6. Allied health assistants......................................................................................................... 22
3. Research framework ......................................................................................................................... 23
3.1. Data collection and participant recruitment........................................................................ 24
3.2. Interview protocol................................................................................................................ 25
3.3. Online questionnaire............................................................................................................ 25
3.4. Data management processes ............................................................................................... 26
3.5. Summary of participant information ................................................................................... 27
3.6. Limitations ............................................................................................................................ 28
SECTION 2 – FINDINGS .......................................................................................................... 28
4. Caring for children with disabilities – what does this really mean?.................................................. 28
4.1. More than a diagnosis.......................................................................................................... 28
4.2. The value of an inclusive society .......................................................................................... 29
4.3. The day-to-day ..................................................................................................................... 31
4.4. How would parents and carers shape physiotherapy services? .......................................... 33
4.5. Costs of care ......................................................................................................................... 34
5. Issues and reflections on service quality ........................................................................................... 36
5.1. A lifespan perspective .......................................................................................................... 36
5.2. Service models and challenges ............................................................................................ 38
5.2.1. Service restrictions.................................................................................................. 38
5.2.2. Best practice approaches ........................................................................................ 42
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5.3. Fostering positive communication and reporting channels ................................................ 43
5.4. Building workforce quality ................................................................................................... 45
5.5. Considering evidence-based practice and areas of advanced scope................................... 47
6. Issues and reflections on service choice and access ......................................................................... 49
6.1. Vulnerability and advocacy .................................................................................................. 50
6.2. Perspectives on choice ......................................................................................................... 52
6.3. Rural and remote access and service sustainability............................................................. 54
6.4. Applying technology to DisabilityCare Australia .................................................................. 55
6.5. Roles for clinical students and allied health assistants ........................................................ 57
SECTION 3 – IDEAS & CONCLUSION .......................................................................................... 59
7. Practical ideas and recommendations .............................................................................................. 59
7.1. The voice of parents and carers ........................................................................................... 60
7.1.1. Relationships ........................................................................................................... 60
7.1.2. Relevance ................................................................................................................ 60
7.1.3. Time ........................................................................................................................ 61
7.1.4. Play.......................................................................................................................... 62
7.1.5. Practice ................................................................................................................... 62
7.1.6. Choice ..................................................................................................................... 62
7.1.7. Authenticity ............................................................................................................ 63
7.1.8. Challenged .............................................................................................................. 64
7.1.9. Application .............................................................................................................. 64
7.2. Workforce, allied health assistants, technology, explaining and sharing ............................ 65
7.2.1. Developing families’ empowerment....................................................................... 65
7.2.2. Model to expand existing services into paediatrics................................................ 66
7.2.3. Model of physiotherapy assistant participation ..................................................... 67
7.2.4. Recruitment and retention strategies .................................................................... 68
7.2.5. Implementation plan for re-entry and refresher in paediatrics ............................. 68
7.2.6. Extended scope of practice..................................................................................... 69
7.3. Information from DisabilityCare Australia ........................................................................... 69
8. Conclusion ......................................................................................................................................... 70
SECTION 4 – REFERENCES & APPENDICES ................................................................................... 70
9. References ......................................................................................................................................... 71
10. Appendices ...................................................................................................................................... 76
10.1. Appendix A: Interview questions for policy advisors and physiotherapists ...................... 76
10.2. Appendix B: Interview questions and questionnaire for parents and carers .................... 78
10.3. Appendix C: Table of practical ideas and recommendations ............................................. 80
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Executive summary
Perspectives on children’s physiotherapy services seeks to identify practical solutions that will help
the transition to DisabilityCare Australia (the National Disability Insurance Scheme) for
1. Children with a disabilities
2. The disability services workforce
3. Disability service organisations.
The practical ideas are centred on two facets
1. Empowering parents of disabled children to exercise choice and control through
understanding what they expect from physiotherapy services
2. Expanding and growing the available physiotherapy workforce.
Extensive consultation was undertaken with parents and carers of children with disabilities,
physiotherapists, and policy advisors. In addition, a review of the literature and examples from other
disciplines were explored in the development of practical ideas. The practical ideas were developed
within a citizenship approach of negotiated partnership rather than a top down approach (Duffy,
2012).
The voice of parents and carers
1. Relationships – know about my child and my family.




I want ongoing and consistent care with a physiotherapist
I don’t want an assessment focus and my child having to ‘perform’ in front of unknown
providers
The technology I carry with me can help. My child’s achievements can be recorded and
demonstrated on mobile phones or an iPad, and can be held by me and the physiotherapist
with appropriate permissions for our privacy
I’d like to tell my story less often. Health information scanned and stored on a USB for me to
hold means I can to take it to appointments or download it onto my iPad or give it to my
child’s health care provider.
2. Relevance – rather than being a series of hoops to progress through, I want physiotherapy
relevant to my interests and contribution to community.


My focus for my child is on living a life that is their own and reflects their values, capacities
and dreams. I want recognition when change happens, like transitions to school, and
requires considerations of new environments and people new to me and my child where
physiotherapy negotiates through partnership with my child’s interests and contribution to
the school community
I want services provided in a multidisciplinary team, with consistency of therapists over the
long term to know about my child
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
I want to choose linking with established school-based teams, working with the
physiotherapist who knows me and my child, or assemble my own team to work with the
school, including curriculum advisors to make it relevant to my child’s capacities and dreams.
3. Time – does it need to be in the same sequence in the same order or change it up so I learn my
child’s and my own learning styles and interests?



I want an outcome not output focus by matching my child’s and my learning styles and
interests
Connect me with the right services when I want them, so I can get advice when I need it
Use the technology that suits me and my child, like virtual consultations. If I live away from
the physiotherapist, maybe in a rural and remote area or if the physiotherapist is the
specialist in a particular area, I want virtual consultations available. I also want time for quick
check-ins or touching base, using email or a blog.
4. Play – opportunity to explore and make mistakes, tinker while working on my child’s outcomes
and goals.

Let my child be “doing their physio” while hanging out at home with Dad or their brothers
and sisters. Explain to me how to do this and let me know it’s OK to do so.
5. Practice


Don’t think my child can learn something and then simply move on. Avoid withdrawing
services once something is ‘done’ or something new is introduced, let my child practice. My
child can practice with allied health assistants or physiotherapy entry-level students. Let’s
use technology to show you how we are going or clarify things as we progress.
Keep changing what my child does and maybe retry something that didn’t seem helpful
before. Practice and contact with physiotherapists keeps me motivated, as does explaining to
me how my child is progressing.
6. Choice – give me choice, not progress along the same path as everyone. Let’s discuss what, when,
and how in thinking of physiotherapy.


Choice can come from knowledge of what’s available and possible. Access to evidence and
lay summaries of research provides the basis for my choices discussed with health and
disability providers. For example, can my child benefit from treadmill training for walking?
Can evidence from treadmill training be reapplied to a ‘robotic’ walking device?
Website and databases provide evidence, for example the Evidence Based Medicine Toolkit
(http://www.ebm.med.ualberta.ca) or the physiotherapy focused PEDro
(http://www.pedro.org.au). Currently these summaries of evidence are not prepared for me.
Innovation allows the most promising practice and yet a stubborn commitment to ‘evidence’
can stifle innovative thinking (Crosbie, 2013). Evidence may develop as outcomes are seen
and families share experiences. Help me access ‘user friendly’ evidence, because “you don’t
know what you don’t know”
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

Does the sequence need to be a form signed off by a paediatrician or other medical
practitioner? Can’t the person who knows me and my child best sign my referrals, or my
equipment requests? For example the physiotherapist could provide
o direct referral to medical specialists (for example, paediatricians)
o greater access to referrals for diagnostic imaging
o injecting rights for botulinum toxin-A for use with muscle spasticity
o limited pharmacological prescribing rights (for example health practitioner
prescribing pathways)
Let me make some of my own informal assessments. An online developmental checklist with
details of developmental milestones or functional outcomes, like reading, and things to
consider reviewing, for example vision, comprehension, attention with follow-on ideas of
where to go next, for example which health professional’s advice to seek.
7. Authenticity – does the community recognise my work? Is the learning significant outside the
physiotherapy session? I want to shape how others see me and my child as a fellow citizen in the
community.



If you show my child has trouble walking by assessing them in front of their peers at school,
you demote my child in their peer’s eyes
See me and my child as belonging to my local communities. Apply my child’s skills in a range
of situations, like riding my bike in the cross country event with my school friends, let my
child do archery even if my child needs to sit down, and don’t be afraid to let my child do the
flying fox
So I can know how we are progressing, help me understand where we are heading and what
are the steps to get there. It also helps me explain to other health providers, school, and our
family what is happening.
8. Challenged – is my child appropriately challenged?

Re-evaluate goals and apply things in different contexts. My family’s life will be influenced by
the goals, small and large achievements, and motivators my child has. Change the way we
approach and do things and see what my child can achieve.
9. Application – is it only theoretical or does it apply in the real world?


How am I going to get this to work at playgroup so I can stand back like the other parents?
Plan with me how the group’s facilitator or a different carer can enable me to be part of
things just like other families
I find out useful stuff from other parents, so I’d like a way to connect with other parents
either in person or online. I’d like to be able to find family advocacy networks easily to help
me negotiate the systems and help me apply things in the real world.
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Workforce
By stretching the model of paediatric physiotherapy, by continuing one-to-one care but responding
to choice and need, by adding in others to deliver physiotherapy like allied health assistants, teacher
assistants, and paid carers physiotherapy can provide context for these practical ideas.




Using technology to widen access and also allowing times for checking-in and advice
Growing and expanding the workforce by retention of existing paediatric physiotherapists,
encouraging change to and re-entry into paediatric physiotherapy, and increasing student
placements can provide increased services and recruit future providers especially those with
a disability
Having specialist physiotherapists to provide consultations, problem-solve, and advise
families and the ‘usual’ physiotherapist
Sharing information with parents and carers to build relationships, negotiate goals for their
child, and enable down-to-earth practice and application.
Information from DisabilityCare Australia
Participants recommended that the DisabilityCare Australia website be developed as a conduit to
services with different language options and a comprehensive list of service options, policies, and
updates available.



Health professionals in categories or by skill
Service providers clustered by the experience, services, and connections that they provide
An information network for those without sufficient internet access or when their question is
not answered.
Glossary
Acquired disorder
Activities of daily living
A characteristic, condition, or disease originating after birth, not by hereditary or
developmental factors but by a reaction to environmental influences outside of
the person.
The activities usually performed in the course of a normal day in a person’s life,
such as eating, toileting, and dressing.
Allied health assistant
Supports and assists the work of allied health professionals. Allied health
assistants may undertake clinical work with clients and non-clinical support such
as clerical or administrative tasks. Allied health assistants may work with one allied
health discipline across several allied health disciplines.
Better Start for Children
with Disability
Provides funding for early intervention services for eligible children. Eligibility is
based on specifically diagnosed disabilities and is subject to an eligibility threshold.
The disabilities and thresholds are determined by the Department of Families,
Housing, Community Services and Indigenous Affairs. An eligible child must be
registered before they turn 6 years old and funding must be accessed before they
turn 7 years old (from http://www.fahcsia.gov.au/).
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Bio-psychosocial model
Case conference
Citizenship
Takes into account the biological, psychological and social factors of a patient’s
condition. Like the biomedical model, it focuses on the individual for diagnosis and
treatment (Germov, 2002).
A meeting between several different stakeholders to discuss and explore
management of a client.
“… an active lifestyle that has the prospect of fulfilment for the person concerned.
Such a lifestyle is one where, as part of a personally defined set of lifestyle choices,
the person is in and part of their local community, contributing and growing
through involvement in meaningful valued activities, and participating in a
network of relationships characterised by acceptance, belonging and love.”
(Williams, 2010)
Clinical educator
Senior, qualified, practising allied health professional whose role is to supervise,
facilitate and assess students’ learning while they are on placement (Moore,
Morris, Crouch, & Martin, 2003).
Clinical reasoning
A critical skill in health professions, central to the practice of professional
autonomy, and enables practitioners to take the best-judged action in a specific
context (Higgs, Jones, Loftus, & Christensen, 2008, p. 4).
Congenital disorder
Early intervention
Evidence based practice
Empowerment
Family-centred practice
Helping Children with
Autism
Inclusion
Interdisciplinary practice
Interpretive research
Mentoring
Multidisciplinary
An anomaly or disorder which is present at birth. It may be inherited, acquired
during gestation, or originate during the birth.
The earliest point of providing services to a client or patient.
Evidence-based practice should be informed by relevant, high quality clinical
research, patients’ preferences, and physiotherapists’ knowledge (Herbert,
Jamtvedt, Mead, & Hagen, 2005).
The power and assertiveness to make decisions based on access to relevant
information and resources, real options from which choices can be made, and
control for effective change.
The centrality of the family as the unit of attention with an emphasis on
maximising families’ choices. It is a strength rather than a deficits perspective and
is cultural sensitivity (Scott, 2005)
Support for parents, families, carers and children from Indigenous backgrounds,
Culturally and Linguistically Diverse (CALD) backgrounds, and those living in rural
and remote areas. There are eligibility criteria such as under 6 years of age and
assessment by an Autism Advisor (from http://www.fahcsia.gov.au/).
The opportunity to participate fully in society as a full citizen.
Refers to people with distinct disciplinary training working together for a common
purpose, as they make different, complementary contributions to patient-focused
care (McCallin, 2001).
Research that explores participants’ perceptions of a research situation (Parry,
1997).
A trusting relationship with an individual who offers guidance, support and
encouragement.
A multidisciplinary team as one where individual professionals work in parallel,
with little interaction between them. Individual profession-specific therapists
perform their assessments, goal planning and treatment in isolation (Bell, Corfield,
Davies, & Richardson, 2010).
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System
Systems theory
Transdisciplinary
An organised assembly of components that share a relationship with each other,
creating a unique behaviour, with each component contributing to as well as being
affected by it. Contains boundaries, elements, relationships and is sensitive to
homeostasis (Sturmberg, 2004).
A specific theory that seeks a common language to unite the scientific community
(Midgely, 2000). Believes that the ‘whole is greater than the sum of its parts’.
General Systems Theory is applicable to all manner of sciences (Angen, 2000).
A framework for professionals which allows the sharing and integration of
expertise of the team members (Bell, et al., 2010).
Tables
Table 1: Aims, themes, and proposed outcomes .................................................................................. 11
Table 2: Data management ................................................................................................................... 24
Figures
Figure 1: Data analysis process ............................................................................................................. 27
Acknowledgement
This research and report were funded by the Department of Families, Housing, Community Services
and Indigenous Affairs (FaHCSIA) through the National Disability Insurance Scheme, Practical Design
Fund.
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Those who do not get a chance to be heard,
Those trying to be heard, and
Those who are tired not sad.
Section 1 – Background
Introduction
Perspectives on children’s physiotherapy services aims to help decision makers who choose their
assistance, navigate community life, and create new opportunities for similar people, work together.
The practical ideas are presented with the vision of full citizenship. Duffy (2012, p. 114) stated that
[The] Citizenship Model begins by placing the person, and their family and community, at
the centre of things. Instead of seeing services as gifts from the professional, the
Citizenship Model treats services as negotiated partnership between the citizen and the
professionals and that the citizen’s ability to do this is underpinned by their entitlement
to direct any necessary resources.
The keys to citizenship include Purpose – are you living a life that is authentically your own? – Control
– are you free and in control of your own life and making your own decisions? – and Giving – do you
contribute to the community, through work, membership or some other form of giving? (Duffy,
2012).
The practical ideas are further situated in the National Disability Insurance Scheme Act 2013 (Cwth),
National Disability Strategy 2010-2020 (Australian Government, 2011), the United Nations
Convention on the Rights of Peoples with Disabilities (United Nations Committee on the Rights of
Persons with Disabilities, 2008), Disability Standards for Education 2005 (Cwth), National Standards
for Disability Services (Disability Service Standards Working Party, 1997), and Disability Discrimination
Act 1992 (Cwth). Physiotherapists are registered to practice under the Health Practitioner Regulation
National Law 2009/2010, as enacted by each State and Territory, which provide a code of conduct
and recency of practice registration standards (Australian Health Practitioner Regulation Agency,
2012).
Block grant funding, from government to organisations to children with disabilities, has been the
model of paediatric physiotherapy service provision. This funding approach provides constrained
services that lack the desired one-to-one care needed for children with disabilities and which is only
found by self-funded private services. The block funding model has reinforced the powerlessness of
disabled people, who are not treated as citizens but as passive users of services (Duffy, 2012).
This study heard moving stories of families trying to lead lives that reflected their abilities and
aspirations. Whether it was getting children to playgroups or to schools, and their achievements over
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major challenges to live authentically. Parents and carers presented as the most knowledgeable
people regarding the health and needs of their child, with a large role as advocate and coordinator.
Caregiving required highest level of organisation, endurance, and overall caregiving ability (BourkeTaylor, Howie, & Law, 2010). In turn the physiotherapist can be the main source of support for
parents and carers of a child with disabilities, when their child becomes just a ‘normal’ kid while at
therapy (Green, 2001). It is generally agreed that among parents of children with chronic illness and
disability, social factors such as respect, support, information exchange, partnership, and the ability
to develop consistent, long-term relationships play a key role in parent satisfaction with health
professionals (Green, 2001). The satisfaction with physiotherapy comes from an ability to develop
consistent, long-term relationships and seeing their child making progress
Just tell me in what [way] we’re progressing, tell me where we’re going, what goals she’s
accomplished. What can we do to help her accomplish more (Green, 2001, p. 806)?
Parents and carers can be ‘tired not sad’, love, and value their children but are also affected by the
financial stress and time constraints presented by their situation (Green, 2007).
This project critiques physiotherapy for children and presents practical ideas of what it could be
possible with the implementation of DisabilityCare Australia. As Foucault (2000, p. 456) noted
A critique does not consist in saying that things aren’t good the way they are. It consists
in seeing on what type of assumptions, of familiar notions, of established unexamined
ways of thinking the accepted practices are based.
The perspectives of parents and carers, policy makers, and physiotherapists together with the
literature, standards, and legislation inform both the critique and practical ideas. An approach was
taken to consider the deep seated assumptions and preconceptions that underpin policy and services
as a gift that are shaped and controlled by the health professions. This enabled understanding of
what kind of familiar, unchallenged, unconsidered modes of thought the accepted practices rest
upon (Duffy, 2012; Foucault, 2000; Hallahan, 2012).
This project was initially conceived in a health services paradigm but evolved and developed through
a social model of disability and into a citizenship model. The work took on a deeper analysis and
challenged assumptions of the inherent vulnerability of those with disabilities and their families. The
foundations for the research were re-examined as it progressed rather than assume they were
correct (Crosbie, 2013). New questions were explored: When innovation can allow the most
promising practice, how do ideas become a reality? What are the other physiotherapy service models
and what do they look like within a citizenship model?
In developing practical ideas for DisabilityCare Australia , the questions were: What do those with a
disability and their families expect of physiotherapy and what do they need to stay engaged with a
citizenship model through purpose and control (Duffy, 2012; Leaving ToLearn, 2013)?
Practical ideas are presented as expectations of relationships, relevance, time, play, practice, choice,
authenticity, challenge, and application which were adapted from Washor and Mojkowski (2013).
This is supported by a workforce model which stretches the traditional one-to-one service model into
negotiated partnerships using digital leadership, that is using the reach of technology (especially the
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use of social media) to improve the lives, well-being, and circumstances of children, parents and
carers.
Table 1: Aims, themes, and proposed outcomes
Theme
Proposed outcome
Aim 1
Empower parents and carers of children with disabilities with what to expect from physiotherapy and
services to meet their needs, to enable exercise of choice and control
Identify how families and carers can best participate in Develop key elements for a practical guide to care
the development of care planning.
planning and goal setting for families and carers
participating in physiotherapy care.
Aim 2
Expand, adapt and grow the paediatric physiotherapy workforce
Explore how to recruit and retain clinicians into
Identify recruitment and retention strategies for
paediatrics, considering the potential roles for student paediatric physiotherapy and implementation plans.
physiotherapists/clinical educators
Investigate physiotherapists developing their selfefficacy to increase uptake of paediatric practice (for
example, in private practice, rural and remote areas).
Develop ideas to expand existing services into
paediatrics (including rural areas).
Examine re-entry models into the physiotherapy
profession with limited registration to provide
paediatric services.
Propose implementation plans for re-entry into the
profession with refreshers in paediatrics following
Physiotherapy Board of Australia limited registration
guidelines.
Investigate models of extended scope of care,
including non-medical prescribing, coordination of
care and reducing the need for medical appointments.
Develop possible profiles of extended scope of
physiotherapy in paediatrics within various common
contexts.
Explore important indicators in family empowerment,
to build choice and control.
Propose guidelines to enable the development of
training packages for physiotherapists to develop
families’ empowerment
Consider the role of allied health or physiotherapy
assistants’ participation in the delivery of paediatric
services. Examine how to support people with a
disability to take on a mentoring role for children with
a disability.
Suggest ideas for allied health assistant participation
in paediatric services.
Identify key elements that could be included in
information packages that will enable people with a
disability, families and carers to effectively use their
consumer choice and control.
List key elements for how information will be
provided to families and carers about service
provider selection using physiotherapy as an
example, including appeals processes and
safeguards.
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Literature review
This review is a snapshot of recent reports, reviews, and academic literature on disability service
models, empowerment, and physiotherapy workforce issues. The purpose of the review is to provide
context for the research and practical ideas. The literature retrieved explores similar schemes and
implementation issues in Australia (particularly Western Australia), Scotland, England, Wales,
Northern Ireland, the Republic of Ireland, and New Zealand. The literature search was limited to
2003-2013.
Personalisation
There are many reports and articles on the move from block funding of disability services to personcentred, individualised funding for people with disabilities (Bennett & Bijoux Ltd, 2009; Chenoweth &
Clements, 2009; Jenny Pearson & Associates, 2012; Johnston, Lardner, Barton, & Martin, 2009;
KPMG, 2009; McCann, 2012; National Disability Authority, 2010). Rather than repeat these in-depth
reviews, this section outlines the advantages of person-centred, individualised funding.
Personalisation is the term used to encompass the breadth of person-centred, individualised funding
schemes (Duffy, 2012). Examples of personalisation schemes include
1. Cash-for-care
2. Consumer-directed care
3. Direct payment
4. Flexible funding
5. Independent living
6. Independent support
7. Individual budget
8. Individual support package
9. Individualised funding
10. Personal budget
11. Personal independence payment
12. Personalised budget
13. Person-centred planning
14. Self-directed funding
15. Self-directed support
16. Self-managed funding.
All these schemes have one thing in common: the individual’s right to choose and control their own
supports rather than being subject to ill-fitting eligibility criteria structured around funded services
(Chenoweth & Clements, 2009).
Overall, the advantages of personalisation to the individual, their families and carers, and the
community include an increase in
1. Choice
2. Control
3. Dignity
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4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
Empowerment
Flexibility
Independence
Self-determination
Well-being
The range of services and supports obtained
The types of services and supports obtained
Community support
Support for the family
Social participation
Economic participation (Bennett & Bijoux Ltd, 2009; Chenoweth & Clements, 2009; Jenny
Pearson & Associates, 2012; KPMG, 2009; Ottmann, Laragy, & Haddon, 2009).
From a funding perspective, the advantages of personalisation are
1. A focus on human rights
2. Private market involvement in care
3. Increased participation by people with disabilities economically, socially, and in service
provision
4. Better outcomes for people with disabilities economically and socially
5. Better outcomes for families and carers economically and socially
6. Capacity development in the community and for people with disabilities
7. Expenditure at the same or similar levels to the provision of traditional disability services
(Bennett & Bijoux Ltd, 2009; Christensen, 2012; KPMG, 2009; National Disability Authority,
2010).
However, the benefits for people with disabilities, their families and carers, and funding benefits do
not happen just because personalisation policies are introduced. Where personalisation has
operated for a number of years, experience has taught one particular lesson: personalisation
requires collaboration between people with disabilities and the agency entrusted to distribute
funding. This makes personalisation different to traditional models that were largely inflexible,
diagnostic-dependent, and fragmented (Chenoweth & Clements, 2009). Instead, the person with
disabilities is the centre of and the purpose for which the agency exists. Therefore, the agency needs
to make certain commitments to people with disabilities, their families and carers.
The first commitment is the need for clear, open, and honest communication between the agency
and people with disabilities, their families and carers (National Disability Authority, 2010; Ottmann &
Laragy, 2010). People with disabilities, their families and carers need to be fully informed so that they
can make choices for and have control over their future. For this to happen, the agency needs to
provide information while being explicit about the advantages and disadvantages of potential
services, difficulties the agency may be having, and minimising the bureaucracy involved (Chenoweth
& Clements, 2009).
Second, clear, open, and honest communication may then lead to building trust between the agency
and the person with disabilities, their families and carers (National Disability Authority, 2010;
Ottmann & Laragy, 2010). Trust is important because without trust in the agency, a person with
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disabilities, their families and carers cannot take control of their situation and choose the best way
forward for themselves.
Third, the agency needs to train all staff in the values of the agency and what it aims to achieve
(Bennett & Bijoux Ltd, 2009; National Disability Authority, 2010; Ottmann & Laragy, 2010). Without
full management and front line staff integration and support for the values of the agency, there will
be a disconnection between what is offered by the agency and what is needed by people with
disabilities. Furthermore, staff need to be aware of and understand different local, State, Territory,
and Commonwealth funding arrangements so that they can give impartial and appropriate advice
(Laragy & Ottmann, 2011).
Fourth, the agency needs to include people with disabilities in decision making (National Disability
Authority, 2010; Ottmann & Laragy, 2010). This means making sure that people with disabilities are
included in the whole decision making process from concept through to evaluation. This requires the
agency to encourage participation and to include people with disabilities, their families and carers.
Moreover, it means that resources need to be made available to do this (Ottmann, et al., 2009).
Finally, the agency needs to be flexible in dealing with the needs and choices of people with
disabilities, their families and carers (KPMG, 2009; National Disability Authority, 2010; Ottmann &
Laragy, 2010). The agency needs to always remember that the focus is on the person with disabilities,
their families and carers. It is the hard to measure outcomes for the person with disabilities, their
families and carers that are important rather than easy to measure outputs from a system.
It should be noted that many of the studies into personalisation are small scale, short term and
interview people that are likely to participate in or have remained in personalised funding models
(Bennett & Bijoux Ltd, 2009; KPMG, 2009; Leece & Leece, 2006; Ottmann, et al., 2009). Studies
generally exclude those that cannot or do not participate in personalisation due to their personal
circumstances, economic situation, their locality (rural and remote users may not have the choice of
supports that people living in metropolitan and major regional areas have), the accessibility of
services (public transport to and from services for people with a disability), or a lack of knowledge
regarding services and entitlements.
Limits of personalisation
The limits of personalisation began coming to light around 2004. The research was mainly from
Scotland, England and Wales, where personalisation has a longer history than in other countries. The
limits of personalisation are not considered a general failure of personalisation, which is generally
welcomed, but more consequences of personalisation that were not foreseen (Duffy, 2007). The
limits of personalisation can be broadly placed in two categories: agency issues and adoption by
people with disabilities, their families and carers. Agency issues are outlined first followed by
adoption.
Agency issues
In a review of person-centred planning, Mansell and Beadle-Brown (2004) found that many plans
were developed by funding agencies and people with disabilities, their families or carers that did not
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have measureable goals or objectives, had no review date, and did not reflect an individual’s
circumstances. The reason given for this was that funding agencies were under pressure to reduce
costs and staff saw the plans as a bureaucratic process. In other words, the plans were inflexible
administrative outputs rather than a way to fulfil flexible outcomes. In learning from this, the
National Disability Authority (2010) reported that that funding constraints should not affect the
objectives of personalisation. Instead, the speed at which personalisation objectives are achieved
should be reduced.
A second agency issue was bureaucratisation, where agencies asserted that they were doing
something about personalisation but in fact did nothing (Burton, 2010; Duffy, 2012). This situation
occurred because in the United Kingdom each borough had the task of implementing personalisation
but did not initially have any time frame to do so. When the government mandated that boroughs
introduce personalisation, some found it more expedient to declare the introduction of
personalisation without making any changes to disability services. This situation is less likely to occur
in Australia because DisabilityCare Australia is a centralised system and not devolved to a local level
like the system in the United Kingdom.
A final agency issue is what Simpson and Price (2010) called the romanticism of disability policy. This
idea is based on the work of Burton and Kagan (2006, p. 305) who stated that personalisation can be
idealised so that policy makers think that people are
… making choices about activities in pleasant neighbourhoods, with plentiful community
resources. They are supported in this by their own staff, which they employ, and who
work to their specification. They are likely to be in work, and to have friendships and
relationships, mostly with non-disabled people.
However, people with disabilities may not have families or carers and community resources may not
be available or accessible. In relation to work, Australian Bureau of Statistics (2009) labour force
participation data for people aged 15-64 years showed that 83% with profound, 62% with severe,
51% with moderate, and 44% with mild core activity limitation do not have a job and are not looking
for work compared to 17% with no reported disability.
The main problem with the romanticism of personalisation is that the most vulnerable people are
more likely to be affected (Simpson & Price, 2010). That is, people with disabilities who do not have
families or carers or community support or jobs are most likely to be socially excluded and have
worse outcomes from personalisation. This is why each individual should be considered based on
their circumstances rather than assumptions.
Adoption
The adoption of personalisation by people with disabilities and their families or carers has three
trends. First, there was a disproportionate uptake by well-educated, more affluent, middle-class,
younger people (Leece & Leece, 2006). This was attributed to those people having a better
understanding of and therefore having the ability to take better advantage of personalisation. The
reasons given for older people not being offered personalisation was either that older people
themselves were anxious about personalisation or that agency staff attitude to age influenced their
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decision making. In either case, the agencies were encouraged to provide more appropriate
information to older and less well off or less educated people in more relevant manner.
The second adoption trend was a greater adoption of personalisation by people with greater
disabilities (Leece & Leece, 2006). It was suggested that people with less severe disabilities were put
off by the amount of bureaucracy; seeing it as a burden that did not outweigh the benefits received.
Another possibility was that the agency staff were less likely to offer personalisation to people with
less severe disabilities. The lesson to be learned was that bureaucracy needs to be kept to a
minimum and the person with disabilities should decide, in co-operation with agency staff, the
supports they require rather than the agency staff alone. An extension of the second adoption trend,
but in the opposite direction is that people with complex or more serious disabilities are also less
likely to adopt personalisation (McVilly, 2004; National Disability Authority, 2010). This is where
traditional services are likely to be required no matter how successful personalisation is otherwise.
The third adoption trend is counter intuitive given the reason for personalisation: an increase in
isolation (Laragy & Ottmann, 2011). Isolation was more likely to occur over time and in periods of
transition (for example, home to primary school, primary school to secondary school, school to
university/work) or crisis. Reasons given for increased isolation were the lack of a coordinator and
insufficient funding. The coordinator role was only supported for two years and after that period
peer networks were supposed to take over. However, the peer support networks either did not
eventuate or did not fulfil the role of the coordinator. People with disabilities, their families or carers
could buy case management support as part of their personalisation budget. However, nobody
bought case management support because in times of transition or crisis all the funding was used to
deal with the situation in hand. The key lessons from this situation were that a coordinator role was
necessary, plans for transition points should be made, but failing that there should be additional
funding available for individuals or families who are experiencing transition points or a crisis.
Empowerment and paediatric
physiotherapy practice
Empowerment must be viewed as a complex, multidimensional construct that
incorporates much more than components of personal control. Knowledge about
resources and alternatives, positive attributions about personal and family
circumstances, as well as the demonstration of relevant and appropriate behaviour are
crucial features of empowerment (Dempsey & Dunst, 2004, p.49).
Paediatric physiotherapy practice aspires to a family-centred model of care, that is, a model of
practice which recognises that the family dynamic is critical to successful therapeutic outcomes and
child development (Litchfield & MacDougall, 2002). Paediatric therapists are increasingly trained to
consider the needs of the child within the overall family structure, and encourage parents and health
professionals to form partnerships around goal setting and decision making (Brown, Humphry, &
Taylor, 1997; Jolley & Shields, 2009). From early childhood there are two entwined phases of
development occurring within families – the child’s specific physical and psychosocial growth and
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development (Shogren & Turnbull, 2006), and the emergence of the parent(s) child-rearing style and
body of parenting knowledge (Woodcock & Tregaskis, 2008).
A study into a social model of disability suggested that some parents described their parenting in
terms of child development, on the presumption that the earlier skills were acquired then other
developmental skills would follow more easily (Woodcock & Tregaskis, 2008). This suggests that
deviations from the normal acquisition of skills due to disability, developmental delay, or lack of
sufficient exposure to skills could undermine parental confidence in helping their child achieve these
skills. The study also reported that parents found it challenging to ascertain what were expected
child rearing concerns and what were specific to their child’s impairment (Woodcock & Tregaskis,
2008) Physiotherapists can inform and advise on gross and fine motor skill acquisition in each child’s
individual circumstances and, by association, physiotherapists can play a crucial role in supporting
and alleviating parent concerns and sense of unfamiliarity around child development. It is expected
that physiotherapists work with children and their family to understand the needs of the child and to
assist families to understand their child’s development and function (Litchfield & MacDougall, 2002).
The setting where therapy and disability services are administered need to adapt and change as the
child does (Horn & Kang, 2012). It is recognised that the physical environment where services are
administered and a family-centred approach can influence the nature of the physiotherapist-family
relationship (Law, et al., 2003; Litchfield & MacDougall, 2002). Therefore, physiotherapy service
provision should be flexible to the environment that is preferred by families and be therapeutically
useful (Woodcock & Tregaskis, 2008).
Vulnerable families, such as those experiencing poverty or isolation, may need additional supports to
ensure there is some degree of empowerment and that advocacy skills are acquired (Farber &
Maharaj, 2005). Dempsey and Dunst (2004, p. 49) note that, “knowledge about resources and
alternatives, positive attributions about personal and family circumstances, as well as the
demonstration of relevant and appropriate behaviour are crucial features of empowerment”. This is
especially important where there are known social determinants of health such as lower
socioeconomic status that may affect a child’s health and development both directly and indirectly
from the parenting practices and mental health experiences of the broader family unit but
particularly the parents (Farber & Maharaj, 2005). Using knowledge of public health research
correlations between social determinants of health and disability are important for sector planning,
although assumptions about children and families’ capacities should be made on a case by case basis
and be “anchored in reciprocity based on respect and trust, equal voice and disclosure and informed
consent” (Vargas, et al., 2012).
The empowerment of the family and child is partly dependent on the degree to which family-centred
practice is employed by clinicians. Brown, et al. (1997) outline seven discrete stages of family/carer
involvement in therapy
1.
2.
3.
4.
5.
No family involvement
Family as informant
Family as therapist’s assistant
Family as co-client
Family as consultant
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6. Family as team collaborator
7. Family as director of services.
By offering clients choice and control over services and resources purchased the intent of is for
families to consider operating at levels six and seven. However, some families may not choose to
operate at these levels, and instead prefer to have clinicians or case managers more involved in
service coordination than to be their own director of services. Regardless of how families choose to
involve themselves in the therapy processes, there will likely be professional challenges such as a
perceived reduction in expertise or a compromised professional identity as paediatric
physiotherapist move from a historical ‘professional gift’ approach towards a more collaborative
model (Duffy, 2012; Litchfield & MacDougall, 2002). If physiotherapists with the skills and specialist
knowledge to address parents’ and children’s’ issues are not satisfied, supported, or remunerated to
use their skill set fully and appropriately, the number of services and options available to consumers
may diminish. Previously documented professional and consumer barriers include: limits to families
having control over services chosen due to the lack of services available; conflicts arising between
clinical evidence-based practices and family-centred practices; and families not receiving adequate
information about their child and forecast situation, which is correlated with a lower sense of
empowerment (Fordham, Gibson, & Bowes, 2011; Woodcock & Tregaskis, 2008).
Research also points to pre-school and other key school-related transition points as critical stressors
for families (Woodcock & Tregaskis, 2008). The decision whether to pursue mainstream schooling or
special education is pivotal in the development of a child’s educational capacity and peer
relationships, and needs to be thoughtfully negotiated between parents, educational professionals
and possibly allied health therapists who can assess children’s motor and functional performance in
the school setting. Up to now families with children with disabilities have had no consistent
“legislation nor policy in Australia that advocates for service co-ordinators and it is argued that as a
consequence many Australian families are deprived of this fundamental aspect of professional
support” (Fordham, et al., 2011, p.651). A gap in effective coordination between all parties for
children with disabilities during those school-related transition points needs to be more fully
addressed in future research (Fordham, et al., 2011).
For an effective national disability scheme to be implemented, it needs to be based on principles of
empowering the family and the child; giving families knowledge and advice to make choices about
services and supports; supporting them at critical transition points beyond early intervention phases;
and having an adequate supply of the right skilled professionals to easily and quickly step in and
support families when they need assistance.
Local area co-ordination
The need to assist families to feel empowered and receive assistance with coordinating supports and
services ties in well with the literature on local area coordination. Although legislation on funding
and advertisement for local area coordinators have occurred together as part of DisabilityCare
Australia, it is important to emphasise that personalisation and local area coordination are not the
same thing (Scottish Government, 2008). At its most basic, personalisation is a funding and
entitlement model for people with disabilities, where individuals have choice and control over the
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supports they require. On the other hand, local area coordination is the practical way that people
with disabilities can identify their goals, plan for the future, and build the capacity, personally and
within the community, to achieve these plans and goals. Personalisation models can be introduced
without local area coordination, as has happened in England and Wales (Duffy, 2012). However,
anywhere local area coordination has been introduced personalisation models have also been part of
the mix. The objective being that the intertwined strands of personalisation and local area
coordination can achieve better outcomes for people with disabilities than personalisation alone
(Bennett & Bijoux Ltd, 2009; Disability Services Commission, 2003; Ministry of Health, 2012; Stalker,
Malloch, Barry, & Watson, 2007).
Local area coordination and local area coordinators were introduced in Western Australia in 1988.
Since then local area coordination has been introduced in Scotland, Queensland, New South Wales,
and the Australian Capital Territory. Aspects of local area coordination are also used in New Zealand,
the Republic of Ireland, and Northern Ireland (Bartnik, 2007; Bennett & Bijoux Ltd, 2009; Disability
Services Commission, 2003; Ministry of Health, 2012; Scottish Government, 2008; Vincent, 2010).
There is little independent research on local area coordination with available reports and articles
written by a small number of authors who have direct involvement in local area coordination. Even
so, there are practical lessons available on implementing local area coordination.
Formal principles of local area coordination were developed in Western Australia and similar
principles were developed in Scotland (Disability Services Commission, 2012; Scottish Government,
2008). The current Western Australian principles of local area coordination are
1. As citizens, people with disability have the same rights and responsibilities as all other people
to participate in and contribute to community life.
2. People with disability and their families have natural authority and are best placed to be their
most powerful and enduring leaders, decision-makers and advocates.
3. Access to timely and accurate information enables people to make appropriate decisions and
to have greater personal control in their lives.
4. Families, friends and personal networks are the foundations of a rich and valued life in the
community.
5. People with disability have a lifelong capacity for learning, development and contribution.
6. The lives of people with disability and their families are enhanced when they can determine
their preferred supports and services and control the required resources, to the extent that
they desire.
7. Government and community agencies complement and support the primary role of families,
carers and communities in achieving a good life for people with disability.
8. Partnerships between individuals, families and carers, communities, governments, service
providers and the business sector are vital in meeting the needs of people with disability.
9. People with disability and their families are in the best position to determine their own needs
and goals, and to plan for their future (Disability Services Commission, 2012).
From these principles, the Western Australia model of local area coordination strongly emphasises
individual, family/carer and community development; access to information so that people can make
informed choices; and using natural support networks rather than being dependent on government
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support. People with disabilities also have the choice to use local area coordinators or to self-manage
their decisions and support needs.
A review by the Disability Services Commission (2003) stated that the local area coordination scheme
was highly valued by people with disabilities, their families and carers. This was because local area
coordinators
1.
2.
3.
4.
Were from the same area as the people with disabilities
Took the time to build up a relationship with people with disabilities, their families and carers
Responded to an individual’s circumstances
Offered practical support without the bureaucracy normally associated with government
agencies
5. Advocated for people with disabilities in the community.
Furthermore, Bartnik and Chalmers (2007) emphasised that an import part of the local area
coordinators’ role was to ask the right question of people with disabilities. The question to ask is
“what is a good life?” This is to ensure that the focus is primarily on a person’s goals and their rights
as citizens rather than on a more medical model of what services are needed. This point was also
emphasised by Vincent (2010) in relation to local area coordination in Northern Ireland.
Even with all the good work accomplished by local area coordination in Western Australia, there has
been two areas that have required more government commitment. The Disability Services
Commission (2003) review made it clear that a ratio of one local area coordinator to 40-60 people
with disabilities (including their families and carers) was an upper limit. The lower ratio should be
used for remote and rural communities and the higher ratio for metropolitan centres. Furthermore,
the continued expansion of the local area coordinators’ role and the inclusion of non-core tasks
should cease because it threatened the positive outcomes and sustainability of the local area
coordination scheme. Also, there were lower levels of satisfaction in local area coordination among
indigenous and culturally and linguistically diverse groups. The review stated that more indigenous
people, and culturally and linguistically diverse people should be employed as local area
coordinators, and that training to raise awareness of culturally appropriate behaviour in other local
area coordinators should be undertaken.
The use of local area coordination in other States in Australia has also raised additional points. In an
evaluation of the scheme in the Australian Capital Territory, Bartnik (2007) identified staff turnover
and continuity as a major issue. Since local area coordination works best when a relationship is built
up over time between local area coordinators and people with disabilities, their families and carers
there needs to be continuity of that relationship rather than people with disabilities, their families
and carers dealing with different local area coordinators. Where there is high staff turnover, this
relationship cannot grow either. In New South Wales, Ottmann, et al. (2009) stated that there was a
lack of resources made available to local area coordinators for community development and
relationship building. This meant that informal support structures that are vital to local area
coordination were not being developed.
Scotland has also had problems implementing local area coordination. This is because local area
coordination was built on existing infrastructure rather than as a replacement or something new
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(Stalker, et al., 2007; Stalker, Malloch, Barry, & Watson, 2008). Like in Australia, local area
coordinators were much appreciated and highly valued by people with disabilities, their families and
carers. However, local area coordination and the role of local area coordinators were imported from
the Western Australia model without discussion with the community regarding how local area
coordination should be integrated into the social, political, and disability services context in Scotland.
The result was that a small portion of local area coordinators were not convinced of the local area
coordination ethos and described it as idealistic. This could happen in the roll-out of DisabilityCare
Australia because people employed as local area coordinators need to be certain of the emphasis in
local area coordination; that is, the promotion of citizenship and inclusion rather than services. A
report by Bennett & Bijoux Ltd (2009) indicated that it can take 12 to 18 months to fully train local
area coordinators, it then requires an ongoing training commitment, and there needs to be salary
and advancement opportunities to ensure the viability of local area coordination.
Further problems in the Scottish implementation of local area coordination were (Stalker, et al.,
2008)
1. 25 out of 32 authorities had implemented local area coordination and implementation was
patchy and uneven across the county
2. Although local area coordination was established as independent, statutory, advocacy body,
many local area coordination offices were co-located with social work offices or resource
centres, giving the perception in the mind of people with disabilities, their families and carers
of being just one more government institution
3. Local authorities imposed arbitrary conditions on local area coordination such as
a. Requiring a social work referral
b. Limiting which disabilities could gain access
c. Limiting which age groups could gain access
d. Any combination of these.
The rules put in place were in direct conflict with the ethos of local area coordination. The effect was
that people with disabilities, their families and carers felt excluded. Local area coordinators were also
frustrated with the system because they had to turn people away who needed and had sought out
their help.
If anything is to be learned from the experiences of other implementations of local area coordination
it is this: the more rules imposed on local are coordinators the more likely local area coordination will
fail.
Allied health workforce issues
As the population of Australia increases there is an increased demand for an expanded allied health
workforce. The main workforce drivers in allied health are
 The increased burden of disease due to an aging population and lifestyle factors, for example
dementia, Type II diabetes, and heart disease
 Changes in government policy regarding health service delivery from a public model to
personalisation models
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 The general public receive a high quality health system and this has created an expectation for
continued improvement and high availability of services
 Changes in attitudes to work and in particular preferences to work fewer hours (National
Health Workforce Taskforce, 2009).
Added to the demand for more allied health workers, it has been difficult to attract and maintain the
allied health workforce in remote, rural, and regional centres. Studies have shown that there are
positives to working in rural and remote areas, such as availability of part-time employment,
independent practice, treatment of a wide variety of conditions, and community recognition.
However, these positives are out-weighed by the negatives, including a flat career path, lack of
professional support, difficulty in accessing professional development due to cost and travel time,
and limited resources (Denham & Shaddock, 2004; Williams, D'Amore, & McMeeken, 2007).
Furthermore, given that the majority of allied health professionals are women, there have been
problems when they try to return to the workforce after time away to raise a family. These issues
include inflexible registration policies, lack of training programmes, and unclear guidelines on
requirements for re-entry (National Health Workforce Taskforce, 2009; Sheppard, Crowe, Jones, &
Adams, 2009).
The move away from traditional service delivery to personalisation has also had an impact on the
allied health workforce. It means that there is a shift in the balance of power away from the
established allied health professions toward individuals who are being encourage to take
responsibility for their health requirements (Duffy, 2012; Nicholls, Reid, & Larmer, 2009). As a result,
allied health professionals are required to change their services to meet a more empowered client in
the community. However, the full impacts of personalisation strategies on the allied health
professions is unknown and is not an area that has been studied in any depth (Jenny Pearson &
Associates, 2012).
Allied health assistants
Allied health assistants provide a supporting role to allied health professionals (Department of
Health, 2012). The need for allied health assistants is due to staff shortages in allied health
professionals and an increased demand for allied health services (Nancarrow & Borthwick, 2005).
The roles played by allied health assistants in the workforce are still under development. Like any job,
the exact duties and tasks undertaken by an allied health assistant depends on the person employed,
their sills and training, the needs of the organisation, and the availability of supervisors to train and
oversee the their performance (Lowe, Grimmer-Somers, Kumar, & Young, 2008).Indeed, up until the
introduction of a formal Health Training Package in 2007 (HLT07), most allied health assistants were
trained on the job which added to the already large workload of allied health professionals
(Department of Health, 2012; Goodale, Spitz, Beattie, & Lin, 2007). The importance of HLT07 is
further shown by professional associations stating that assistants are strongly recommended to have
a Certificate III or IV in Allied Health Assistance. The Australian Physiotherapy Association (2008) has
gone as far as stating that a person could only be called a Physiotherapy Assistant if they had a
Certificate IV in Allied Health Assistance (Physiotherapy) or the equivalent. However, most allied
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health assistants are employed across allied health disciplines rather than in one specific discipline
(Lizarondo, Kumar, Hyde, & Skidmore, 2010).
There is no specific legislation on the duties allied health professionals can perform. However,
professional associations, and state and territory health departments have put in place policies on
what an allied health assistant can and cannot do (Department of Health, 2012; WA Country Health
Service, 2009). In most cases, non-clinical tasks can be assigned to an allied health assistant. For nonclinical tasks, the allied health assistant is responsible and accountable. Clinical tasks can only be
delegated to allied health assistants. In this case, the allied health assistant is responsible for carrying
out those tasks, given that they deem themselves competent to do so, but accountability for the
tasks remains with the allied health professional. Furthermore, there are some clinical tasks that an
allied health assistant cannot perform. These clinical tasks include initial assessment, diagnosis,
clinical decision making, development of treatment or care plans, pre-discharge assessment, and
discharge planning.
Whether an allied health assistant is undertaking a delegated or assigned task, they are under the
supervision of an allied health professional or manager. This supervision may be direct (that is,
working along-side the health professional or manager), indirect (that is, the health professional or
manager is not present, but is easily contactable on-site), or remote (that is, health professional or
manager is not on-site but is still contactable). Allowing allied health assistants to be supervised and
delegated tasks with remote supervision allows them to be located in rural or remote areas but still
have access to the required oversight (Department of Health, 2012; WA Country Health Service,
2009).
Research framework
A qualitative research framework was applied in this study. This is a rigorous and detailed approach
to understanding the thoughts and ideas of participants on the research questions and is well
grounded in the health literature (Angen, 2000; Crossan, 2003; Parry, 1997; Sandelowski & Barroso,
2003a, 2003b). An interpretivist approach was used to explore parents’, carers’, policy advisors’, and
health professionals’ perceptions of physiotherapy’s role and practical implementation in
DisabilityCare Australia (Houghton, Hunter, & Meskell, 2012). An interpretivist approach was
appropriate for this study because the research team wanted to explore what parents, clinicians and
policy advisors want from a national disability scheme; what are the challenges they experience in
providing and accessing quality physiotherapy and disability care; and extrapolate practical ideas that
could having a significant impact on the way DisabilityCare Australia is embraced.
Interpretive research is strongest when information gathered is systematically organised and a
database of participant information collated (Thorne, Kirkham, & MacDonald-Emes, 1997). This is
also an essential process when multiple research team members are evaluating and cross referencing
data, so that participant responses are not misinterpreted or lost in the analytic process (Angen,
2000). Further, interpretive research is sympathetic to multiple and varied methods of data
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collection (for example, interviews, questionnaires) and especially those where the researchers
themselves are the prime data gathering tool (Parry, 1997).
Previous organisational research studies have shown that interpretive research correlates effectively
with systems theory research (Anaf, Drummond, & Sheppard, 2007; Dooris, 2006; Keating, 2000).
This is relevant to the present study because DisabilityCare Australia is a complex system of fluid,
ever-changing structure. Using a systems theory approach allowed the researchers to consider the
interpretive perspective of participants within the context of the DisabilityCare Australia’s structural
architecture (Keating, 2000). Systems theory acted as a guide to the reflection and interpretation of
data. It recognised that all participants had a valid contribution and ‘world view’ on the research
topic and that the challenges of coordinating physiotherapy care within DisabilityCare Australia were
prone to frequent change (Platt & Warwick, 1995). The problems were also complex, involving what
families and children wanted from a service, funding pressures, ensuring services were equitable and
ethical and that services providers were adequately resourced and trained to effectively provide
care. Complex service delivery problems and the opportunities that arise from resolving these
problems, are often best investigated with a systems theory approach.
Data collection and participant recruitment
Permission to conduct this research was granted by the University of South Australia’s Human
Research Ethics Committee (application ID: 31035) in January 2013.
Participant selection was based on principles of purposive sampling because the nature of the
research questions – seeking opinion, ideas, lived experiences and concerns – meant probability
sampling was inappropriate to achieving the practical outcomes. A purposive approach offered the
opportunity for gathering rich information, relevant to the conceptual framework, which was readily
available (Curtis, Gesler, Smith, & Washburn, 2000). Participants were recruited in two ways. Policy
advisors and physiotherapists were contacted directly by the research team from online contact
sources. Parents and carers were recruited to the research via direct contact from the research team
or via Facebook participation in the online questionnaire. Snowballing processes meant that several
participants recommended the study to colleagues or acquaintances, allowing the researchers’ lists
of contacts to grow.
People recruited to this study had broad experiences of the health and disability sector, as service
providers, or having had lived experience with children with disability. Inclusion criteria were
individuals identified as a health or disability policy advisor, a physiotherapist who works with
children, or a parent or carer of a child with disabilities, as outlined in Table 2. Exclusion criteria were
 People under the age of 18 years
 People who were unable to give informed consent due to cognitive impairment
 People who were unable to communicate confidently in English due to an interpreter being
unavailable at the time.
There were no exclusions based on gender, ethnic background, or degree of disability.
Table 2: Data management
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Data type
Data source
Data analysis
Physiotherapists (working with
children)
 Face to Face interview
 Telephone Interview
 Manual coding
 Thematic analysis
Parents and carers (of children
with disabilities)
 Online survey
 Telephone Interviews
 Manual coding
 Thematic analysis
Health and Disability Policy
advisors
 Face to face interview
 Telephone interview
 Manual coding
 Thematic analysis
Interview protocol
Interviews were conducted both face-to-face and via telephone, to gather the widest sample. Policy
advisors and physiotherapists were interviewed while parents and carers had the opportunity to be
interviewed or complete the online questionnaire (which contained the same questions as the
interview schedule), whichever was their preference.
Interview protocol was standardised as much as possible across the research team. Participants were
initially provided with an information sheet and consent form. Permission to audio-record the
interviews was confirmed.
Interviews were semi-structured, meaning that a set range of questions and themes had been
developed by the research team and were piloted on six volunteers. The interviews were responsive
to each individual’s circumstances while enabling replication of themes. Questions were open-ended
and interviews ranged from nearly 20 minutes to over an hour. Core themes discussed with
physiotherapists and policy advisors included
1. Describing the services provided and the client mix
2. How DisabilityCare Australia (as a system) assist parents to effectively advocate for the
appropriate services/interventions for their children
3. Provisions necessary to adapt their business or service model to accommodate new
government packages
4. Ideas on the effective use of technology in DisabilityCare Australia
5. How physiotherapists can assist families to feel empowered (See Appendix A: Interview
questions for policy advisors and physiotherapists).
Themes discussed with parents and carers of children with disabilities included
1.
2.
3.
4.
What it typically means and involves to be a parent or carer of a child with disabilities
Examples of positive and negative interactions with disability services
What their experiences with paediatric physiotherapy services are
How they would like paediatric physiotherapy services to be structured and administered.
(See Appendix B: Interview questions and questionnaire for parents and carers)
Online questionnaire
An online questionnaire was developed to capture the opinions parents and carers who were likely
to be involved with DisabilityCare Australia. The online questionnaire was a flexible and anonymous
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way to gather qualitative data from parents and carers about their expectations and ideas for the
DisabilityCare Australia system, and what it means to be a parent or carer of a child with disabilities
(Hunter, 2012).
The questionnaire was distributed, with permission, on a Facebook page of a disability interest group
and the link was also directly provided to parents during discussions during snowballing processes.
The questions asked also acted as the interview question schedule for parents and carers who
preferred to participate in an interview than document their answers. The focus on a qualitative
approach was maintained through open-ended questions and short response answers, which meant
that a small yet detailed number of responses were gathered. The small number of responses was
anticipated because open questions were used rather than closed questions. Closed questions could
not provide the necessary detail, ideas or context required to inform the desired practical solutions.
Data management processes
Data recordings were transcribed. All interviews and questionnaire data were printed and manually
coded as part of the thematic analysis process. Three of the five members of the research team
coded the data for inter-rater reliability and the full team were responsible for overall data analysis.
All participant data was compared cross-case and categorised into major and minor themes (as
displayed in poster charts). Themes were verified within the research team and then aligned to the
practical solution categories (outlined in Chapter 7). This process has been previously applied in
health research and a diagrammatic representation of process is presented in Figure 1 (Angen, 2000).
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Figure 1: Data analysis process
Processes to enhance the credibility and trustworthiness of data gathered included
 Using multiple sources of data (interview, questionnaire) across three distinct participant
categories
 Developing an auditable trail of evidence (via manual coding processes)
 Inter-rater reliability of coding (using multiple coders)
 Applying cross-case comparisons to build the practical design solutions (Seale & Silverman,
1997).
Summary of participant information
The research team gathered a large amount of qualitative data from 33 participants. This included 13
interviews with physiotherapists who identified as working with children for some or all of their
practice (mean interview time= 44 minutes), 8 interviews with health and disability policy advisors
(mean interview time = 33 minutes), and 12 parent and carer participants (5 via telephone interview,
mean interview time= 39 minutes, and 7 via online questionnaire). Of the 12 parent and carer
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responses, only one person identified as being the carer of a child with disabilities The data volume
was substantial and responses from all participant groups were rich and highly detailed, governed by
lived experiences ‘at the coalface’ and motivation to affect change in and share experiences of, the
disability sector.
Limitations
Limitations of this study include the sample size (n = 33). While the volume and depth of data is
sizeable and robust for the qualitative approach taken, there is always scope to broaden the number
of participants and gather wider perspectives.
Information from some key groups, such as migrants, refugees, and culturally and linguistically
diverse groups could not be collected. This was not an intended omission but reflected challenges of
recruiting to the study in the very restricted timeframe available.
The practical ideas and comments arising from this study have not been independently verified for
feasibility to DisabilityCare Australia and such processes should occur before any specific
implementation of ideas. Future research could revisit the perspectives of families, physiotherapists,
and policy advisors following the implementation of DisabilityCare Australia, to review whether any
strategies raised have been followed through or evolved, as more detail emerges about the scheme.
Section 2 – Findings
Caring for children with disabilities – what does this really mean?
Parents and carers shared perspectives on what it means to care for and nurture a child with
disabilities which in turn provides context for the design of practical ideas. Key issues mentioned by
parents and carers also provide a real-life perspective on issues around service quality, access, and
choice in subsequent chapters. All children’s names are replaced with pseudonyms as indicated with
an asterisk (*).
More than a diagnosis
Parents and carers communicated their support for the concepts of empowerment, independence,
self-determination and dignity. They were eager to describe the spirit and personality their child
brings to their family, regardless of their individual circumstances. Parents and carers described
spending much time and energy accessing the right services and supports, on top of caring for and
nurturing their child. At times they felt that much of the child’s identity was at risk of being tied to a
diagnosis or lack of one. Although many children who may have access to DisabilityCare Australia
have a confirmed diagnosis, many still do not or are undertaking lengthy and complex diagnostic
processes, especially for rare chromosomal disorders or complex multiple disabilities.
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In the early days of pre-diagnosis, it was frustrating, time consuming and [an]
emotionally draining process to anticipate where access to services could be found.
– Parent
[There] was a lady with a child who had some kind … I can’t remember exactly the
condition but it was some genetic disorder with a chromosome that she is missing and
she had huge problems in low tone; couldn’t walk; she was 8 years of age, this kid still
couldn’t speak; you could see visibly that there was a disability impairment … now, she
doesn’t get funding – she hasn’t got a diagnosis.
– Parent
All the parents in this study had children with congenital disorders; their child was born with a
condition that contributed to their disability or illness, either from birth or slowly revealing itself
through the child’s development. The children, however, did not necessarily have the same
limitations, ill health, or restrictions to their participation continuously through their childhood –
these tended to fluctuate markedly due to periods of growth or seasons of the year (winter in
particular predisposing many to additional illness). The timing and onset of diagnosis leads to
different experiences for children and their families. For example, a young child with cerebral palsy
will need different supports and interventions to a teenager with a traumatic brain injury from a
motor vehicle accident. The needs of children with physical disabilities can also differ greatly from
those with intellectual, sensory, or language disorders, and vary at different ages and stages.
We try the different activities with him that, like swings and water, and different things
that are motivating his vocalising and his wanting to move and reach, and do stuff. So,
the weeks vary, depending on what’s going on with him, developmentally.
– Parent
Despite a diagnosis a child may have, parents and carers reported there are always opportunities to
improve their children’s comfort, dignity, contribution to their community and family, or sense of
self-worth and self-determination. A parent described one success story of empowering her child.
I was really keen that being in the water would help him and he was not coping with
regular swimming lessons. So with physio expertise and expertise in dealing with
children with special needs, that took him from being terrified of the water and being
stuck on me like a leech to swimming [in events] and winning medals … it’s a
wonderful before and after kind of story really … I can’t get him out of the water. It’s
hard to believe it’s the same child.
– Parent
Parents saw DisabilityCare Australia as a scheme that needs to acknowledge and support the
potential of each child and family to have an improved way of life and quality of life, no matter how
challenging the circumstances might be. The ways to support children and families to reach this
improved quality of life will be numerous and varied, and should be considered based on individual
circumstances and capacities.
The value of an inclusive society
Inclusion was meaningful to parent and carer participants. Parents wanted to move about their
community with their child without judgement. Some commented on a need for more consistent
support when their child was ready to be involved in community-based programs, such as
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kindergarten or child care. Children’s behaviour and at times their difficulties transitioning to new
environments were also described by parents as a restriction to full community participation.
It’s open mindedness and tolerance and an inclusive approach and that’s part of an …
ongoing issue. Every week I have to be aware that I’m dealing with people who
haven’t had to live the life that we’re leading and don’t have an understanding of the
benefits to John* of being included in life and what the community has to offer.
– Parent
We do not fully participate in the community due to my son’s disability and his
behaviour. He is often stared at and he has meltdowns when in public…so to
participate in life and in the community we need a lot of equipment, a lot of therapy, a
lot of support and respite.
– Parent
Parent descriptions of an inclusive society had public health, disability, and infrastructure systems
that firmly valued the child first as an independent being, with the disability, no matter how
profound, as a secondary part of that child’s and family’s life. It also meant creating an inclusive
society sensitive to the fact that some disabilities are not as visible as others but required no less
support for the child and family.
Ethan* gets a lot of attention from people because he’s gorgeous the way he smiles
and he still hasn’t fully grown [inaudible] gone through puberty yet and he’s about to
do that. The biggest challenge comes in the teenage years when he no longer looks
cute like all the other children, and the differences between children his own age is
becoming more apparent.
– Parent
Some parents suggested that activities such as daily routines, schooling, and recreation should be the
determinants of resources provided to the family, rather than being bound by a diagnosis.
Furthermore, just because a child and the family have a lived experience with disability did not
necessarily mean that this should define their involvement in society.
I don’t want to just go to a group where every child has a disability because just
having a disability doesn’t mean I click with the parents or have the same “world view”
… just because you have a [device] it doesn’t mean that other person with a [device]
even has the same syndrome, let alone the same needs.
– Parent
Parents appreciated being able to access services and supports to help their participation in the
community on their own terms. They valued family support groups which were easily accessible and
information-sharing between families with similar experiences. But parents also wanted to
experience being parents and not just case managers. They wanted to strengthen the bond within
the family unit but it can be difficult to find that balance.
You feel like all your time is focussed on his therapeutic needs and there’s not a lot of
time for [inaudible] cuddles, or play, or just enjoying him … therapeutically we’re
working pretty hard, and we find he’s got a beautiful personality but his actual
developmental needs are pretty exhausting maintaining all of that.
– Parent
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That’s something we come across quite often is that you hear that there’s a service
but when you ring up to actually use it it’s actually not really available, it’s got
limitations and not enough substance to it to be useful.
– Parent
Participants cited examples of how they could not fully participate in their community as a direct
consequence of their child having a disability. This ranged from difficulties with transport and
community access, to severely limited allocated funding for carer hours to the point of being
tokenistic, to services being delivered in a way that did not reflect modern circumstances (for
example, restricted opening hours, only centre-based therapy options). Consistent and permanent
changes to how children and their families can access their community with greater ease could have
a profound effect on their quality of life.
The day-to-day
Parents were asked to describe what a typical week and a busy or hard week involved. This painted a
clear picture of how many pieces are involved in providing adequate care for their child. Many of the
participants had multiple health professional visits in one week.
A typical week [is] work and childcare … either OT, physio or both … conductive ed.
and hydro, a rest day for shopping, washing, house jobs, often have an appointment
as well … jobs around the house and yard, Sunday family/friends day. A busy week is
all of the above with up to 4 extra appointments, and a board meeting for me, plus
time spent on phone or computer planning and arranging future therapy or dealing
with paperwork.
– Parent
For some participants, the day-to-day demands precluded them from paid work or caused them to
experience high levels of stress and anxiety about the health of their child who had complex
disabilities.
A particularly hard week would be, say, a carer was sick that night so we’ve done the
night shift, and James* is in pain and we can’t work out why … and we’ve had doctors’
appointments the same week but they weren’t on the same day because the doctors
don’t work on the same days … and then we’ve got news about him that’s
discouraging, or we’ve dealt with professionals that are difficult to talk to. And it’s busy
trying to do eating practice and physio, and it’s stressful because if he’s not attended
to, he’s crying or whingeing, or grumpy because developmentally he’s unable to do
what he wants to do, so he’s frustrated and nothing is making him happy, and we
can’t really leave him for two minutes because he is upset … so if we do a shift like
that on our own, if we have 24 hours like that, that’s really hard.
– Parent
While a lot of the participants had highly organised and structured schedules to fit in necessary
appointments and care hours for their child, opportunity to find outlets for their own stresses and
anxieties were conspicuously absent from recollections about their usual week. For instance, a
number of participants had well established careers prior to the birth of their child with a disability.
Insufficient care supports, equipment, or flexibility of access to disability services, meant limited
opportunity to return to the workforce which, for many, had been a meaningful part of their life.
Several of the participants relied solely on government payments for income, some were in sole
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parenting situations, and for others the need for their spouse to work extra time to afford necessary
therapy and care supports to assist their child compromised quality family time together.
David* still sees eight medical specialists on a regular basis. So typically I would have
at least one medical appointment a week. Going back a few years ago it would have
been three or four every single week but as I say happily his health has improved, but
it’s still … his health fluctuates and he is more prone to illness in winter, and so I guess
I still don’t feel that I’m able to make that commitment to paid work at this point.
– Parent
Based on the responses, managing the health and wellbeing of a child with disabilities was as much
about supporting the welfare of the parents and carers as it was about having effective services and
supports in place for the child. Services such as respite and additional therapy services were really
important for several participants’ quality of life.
I guess we feel like we really need the night-care that we get … we feel like we need
respite … and we get four hours a fortnight, but it’d be great if that was once a week
…. So that’s time when we can both go away, as a couple, away from James*, so
we’re not – we haven’t got the eyes in the back of our head operating and we can
switch off, and we know that we can switch off and be together, rather than switch off
at the cost of the other person doing the work.
– Parent
With therapy services, parents sought clinicians who could forge a meaningful and ongoing
connection with their child, who had a wide knowledge base, and who were able to adapt to their
family’s schedule and needs. When accessing physiotherapy services specifically, families valued the
opportunity to work towards achieving clinical goals for their child that were not possible with ad hoc
or assessment-only based services. These goals could be committing to get a child walking, working
towards independent transfers at home or school, or having the child participate in individual or
group based leisure activities. One example was a child learning how to walk, which had a flow on
effect to many other areas of the family’s life.
[We paid for] hands-on physio and that has actually got Cary* up on his feet and
walking. He was not weight bearing before that. And that has just literally changed our
lives. We were able to sell the wheelchair accessible van which was a huge financial
burden purchasing that. It also means we have no requirements for a lifter; that it
means that Cary* does only need one person to provide his personal care, but we
need to maintain some hands-on therapy so that he doesn’t lose those skills and also
to progress those skills so that hopefully he will become more independent.
– Parent
As this parent noted, supporting her child to learn these functional skills took time, frequent
participation, a particular knowledge base of movement and physical performance, and an
understanding of the child’s developmental sequences. Other participants noted the need for
ongoing and regular therapy to help their child achieve functional goals and improve quality of life.
Understanding the challenges that families face on a day to day basis, that limit their involvement in
the workforce, and that may isolate them from their peers could help to shape a national disability
sector that is more responsive to their needs.
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How would parents and carers shape physiotherapy services?
Parents were asked to describe how they would organise physiotherapy services for their child if they
had an opportunity to do so. Responses included








Physiotherapy services customised to needs, goals, and abilities
In-home allied health services were highly desired
A combination of individual and small group sessions
A one-stop-shop for services, so children could access all necessary services for health,
therapy, and equipment in one place
Consistency in therapists, timely services, flexible and responsive to the needs of the child
(for example, some children need an intensive block and others intermittent reviews)
Services provided on a regular schedule so plans can be made weeks and months in advance
Varied tasks for example, land and water-based physiotherapy services
Therapeutic services and allied health professions working as a team together
The OT said, “Well I want him to be supported while he’s drawing”, but the physio’s
saying “I don’t want him supported because he’s got to learn to use his own muscles”,
if they’re both there in the same room doing the exercises, then the questions come
up and the conversation happens in a way that it doesn’t happen if one of them
consults with you, leaves, and the next one consults with you, and then you’re always
bridging the gap, middle person holding this info, which we do and we commit to as
parents, but I know other parents find that hard, or they don’t know why they’re doing
what they’ve been given to do.
– Parent
Asking parents and carers to describe ideal services revealed consistent responses. The biggest
variability was in the location of the services administered and this tended to change depending on
the age and stage of the child. For younger children, having in-home therapy or local services was
seen as very desirable. This shifted to having some local therapy and some school-linked services
when the children were older. It suggested that parents valued a variety of different modes of
service delivery that were responsive to their child’s life stage, especially if the therapist could
simultaneously work with other allied health therapists (for example, occupational therapy or speech
pathology). One parent, who had substantial experience linking in with physiotherapy services for
her child who had complex health issues, told the story of how physiotherapy was integrated into her
day and what this meant for her attitude towards her child’s care and her general routine.
… if they’re very little changes, like, even your general paediatrician won’t pick up little
changes or, say, things like, “So is he rolling over yet”?, or, “Is he walking yet”?, and
as a parent, if you’re constantly saying, “No”. It’s really disheartening. But our physio
will say, “Oh look, he’s looking to the side, that’s because he’s telling you he wants
that toy, that’s good motivation, let’s try and get him to like reach with one arm” or,
“Look, he’s using one arm independent of the other arm and that’s great, that’s good –
these are the building blocks that will lead to him rolling over”. And so they assist us in
understanding him, and helping motivate him, so that he’s practicing this stuff.
But I think people think that physios come in and do all these stretches and exercises,
and massages, but they usually come in and give us jobs to do, and the good ones try
and include it in our day, so they’ll say, well do this every time you lift him onto the
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change table … So, they incorporate that into our day, and so, then when we say we’re
doing physio it’s because we’ve been including it in our routine.
Or sometimes we’ve sat down with him and we’re trying to help him get a toy, and so,
he has to take a step to the left, and so … my husband will be holding his hip, trying to
encourage his balance, so that he can lift one leg, and he’ll sit there and have the TV
on while he’s doing all of that and James* is playing, and that’s actually physio, and it
actually does feel like hard work because it’s so demoralising that you see such little
progress, usually. But the physio will then come and say, “Ooh I’ve noticed this has
changed in the last three weeks”, and that, I think that’s the stuff that makes you, as
a parent able to keep doing it. So, more visits from the physio don’t make him
progress faster but they certainly make you engage better, I think.
– Parent
The experiences families had with quality, effective physiotherapy services appeared to influence
parents’ motivation, engagement and persistence with interventions. It also showed, even for those
parents whose children had complex or numerous disabilities, that incremental improvements were
still strong motivators to continue with their child’s therapy especially if interventions were linked to
their daily routine. To do this, parents described physiotherapists connecting with them regularly to
boost morale and adapt functional goals as the child’s situation permitted. Participants in this study
valued being able to shape how the services were provided so that it fit their schedule and lifestyle
as much as possible. Ideally, parents initiated and formulated the goals for their child and the
therapist recommended strategies to achieve these. Conversely, examples of poor service provision
were where clinicians had only limited paediatric knowledge, there was a lack of continuity of
therapists, or clinicians did not invest in building a rapport with the child and family. Positive
experiences are more likely to occur when the family and therapist negotiate the professional
relationship and mode of service delivery they are both comfortable with to support the child’s
functional goals.
Costs of care
Parents and carers were hopeful that DisabilityCare Australia would allow them to access therapy,
equipment, resources, and respite which were currently prohibitively expensive for many. This was
also considering that most of the participants had other children at home that required their
attention and financial support. Some families were self-funding therapy services, regularly fundraising, or applying to grants to pay for services.
Due to time and money restraints we have not been able to access more of these
services. We pay for most of my son’s private therapy through fund-raising. If it was
not for the fundraising we would not access most of the private therapies.
– Parent
Some of these [individuals] need $200K a year. Ethan* would probably $10K a year
[pause] I have got no idea … but there’s a lot of coin that’s needed out there to help
these people. A lot of them are just laying in bed today – they’re not having a shower;
they’re not getting dressed – they’re just laying in bed so that’s what we’re sort of
faced with.
– Parent
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The costs of purchasing therapies and equipment ran into the tens of thousands of dollars for some
of the participants. Other participants were committed to paying for expensive, specialised education
for their child to ensure that cares and supports were provided during the child’s access to schooling
and social opportunities. The type of educational environment a child accessed was frequently
dictated by the cost or accessibility of the facility. This included having adequate funding for trained
staff to support any necessary interventions that permitted a child to participate in the classroom
environment.
So, we looked into childcare as a, not as a respite for us but more as a social thing for
James*, because I think the socialising is a really hard thing to negotiate. And the
childcare centre was really good, but the funding didn’t cover the [respiratory care] …
even though they were capable enough to learn that, their funding, the right body
wasn’t available to write up the healthcare plan.
– Parent
The costs of care for children with disabilities were high and much of parents’ salaries and
government contributions were needed to fund services and supports. What their children could and
could not access were at times solely dictated by funding.
Unable to access additional OT due to cost, also want an orthotics suit but have not
yet been able to find an affordable option.
– Parent
When the appropriate funds could be allocated to cover the child’s needs, participants described
their child’s care situation in a more favourable way.
Because my son’s support needs are not high, I am happy he has been able to access
a good level of support from all service providers, largely thanks to the national ASD
[Autism Spectrum Disorder] early intervention grant. Without this I could not have
afforded the level of OT and psych support, which I believe has greatly assisted him.
– Parent
In many instances, services that could be provided to children were dictated by funding
arrangements. Participants particularly noted specialised disability equipment (for example, hospitalstyle beds or customised prams) were extremely expensive and had to be self-funded. Although not
explicitly discussed, some parents made passing note of the compromises made by other family
members, such as siblings, to fund care and equipment. One parent commented that the demands
on her time meant that without stable employment she was unable to secure a home loan for her
family. The costs of care, financial and otherwise, were significant to every participant.
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Key messages: Caring for children with disabilities
 Parents described valuing a disability scheme which was needs-based more than
diagnosis-based.
 Many parents believed that their children were restricted from full participation in the
community as a direct consequence of the child having a disability. They valued a
society that recognised meaningful involvement for their children in the community
regardless of care needs.
 Parents were looking for physiotherapy services to be flexible and adaptable to their
routines and schedules. These would ideally be delivered in a variety of ways
depending on the child’s age, degree of disability, and the location of services.
Interdisciplinary, coordinated services were also valued.
 The costs of care were emotionally and financially high and could lead to difficult
compromises for family life.
 Parents appreciated physiotherapists who could motivate them and their child to
achieve skills and functional improvements no matter how small.
Issues and reflections on service quality
The themes highlighted in this chapter reflect discussion around how to facilitate quality
physiotherapy and disability service provision. Importantly, participants from each group expressed
uncertainty about how DisabilityCare Australia will fund and coordinate services. Participants drew
upon previous experiences with disability systems and personal ideals to inform their answers.
A lifespan perspective
Policy advisors, physiotherapists, and families agreed that a lifespan perspective of disability was
essential in understanding the physical and psychosocial impacts of disability on children and their
families. This meant recognising that the process of receiving a diagnosis was influenced by
potentially long periods of testing and verifying the clinical signs; that some diagnoses were not
apparent until later in childhood; and that having a child with disabilities demanded a long-term,
consistent approach to management. Some previous government disability initiatives, such as Better
Start for Children with Disability, were dependent on a child receiving a specific diagnosis. Many of
the participants were hopeful that the new national disability scheme would move away from
diagnostic frameworks to a more needs-based approach.
A lifespan perspective of therapy management was seen as satisfying practice for clinicians, parents,
and carers because it accommodated the fluctuating stages of growth and development in
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childhood, the variation in clinical presentations and stages, and acknowledged that many children
with disabilities require a multi-dimensional approach to their care.
Long term work with parents is really good … they don’t have to keep telling their story
and I get to know the children inside out …
– Physiotherapist
The best experiences we have had [are] where the therapists have time to learn about
my son. He rarely fits the norm and it takes time to get to know him and see what will
work. He needs people who can think outside the square.
– Parent
Clinicians and policy advisors reported that their experiences of families needing some assistance,
especially in the early days of acquiring a diagnosis, to determine appropriate therapy services and
strategies for care. Clinicians recognised that they had both knowledge and experience in child
development and were eager to collaborate with families to help their children adjust to different life
stages. They also recognised that physiotherapy is just one dimension of management and at times it
would be a higher priority than other needs, and vice versa.
Physios need to support the parents in seeing the big picture … I think all service
providers need to bear in mind a holistic framework.
– Physiotherapist
It’s total involvement, isn’t it – it’s the family-child unit, and besides just physical
development, we need to look at emotional development as well, behavioural support and
all those sorts of things are very important … [there’s] no point in us telling [parents] you
have to do this, do that with the child when mum is not in the right frame of mind … so
we have to also tap in other people to support the mother to work with their child.
– Physiotherapist
The term early intervention carried different meanings in different clinical settings. Early intervention
for some clinicians and policy advisors had a developmental context, implying the shaping and
teaching of critical milestones for children with or without disabilities to maximise their function. For
others, early intervention was a timely response to critical incidents that cause disability (for
example, traumatic brain injury) and may extend well into teen and adult years, beyond a purely
developmental context. In paediatric disability management, both early intervention interpretations
required care and therapy supports to be accessed in a timely and responsive way.
Children are not static … yes the lesion might be static, the actual disability but their
capacity keeps on changing … as soon as they mature cognitively, emotionally,
physically, they’ll have new goals and they’ll need new interventions.
– Physiotherapist
Parents, carers, and physiotherapists were aware of key periods of transition in a child’s life where
they believed physiotherapy needed to be readily available but currently was not. This included extra
support at major school transition points (such as kindergarten to primary school or primary to high
school) and easy access to services.
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There are some families where the child doesn’t actually get diagnosed until 7 or 8 with
maybe not as significant issues but they still impact a lot on their involvement in school
and recreational kind of activities so they do need that often additional support and
services that go on … That can impact on other areas of the child’s development, their
self-esteem, their participation in activity so that needs to be more of a long-term
assistance for families.
– Physiotherapist
There are times that are recognised that [children] need more support … they are those
transition times and so school, adolescence, leaving school, there are things all through
life that people with disability and their family benefit from being able to access and it’s
well worth the while for their quality of life.
– Physiotherapist
Building DisabilityCare Australia to be flexible across the lifespan was very important for the
participants. This included having disability supports and health professionals available to support
individuals and their families regardless of the nature or onset of the disability.
No one knows Cary’s* needs better than us and also not just the needs on a particular
day but how they change over time, and the fact that there shouldn’t be a third party
that says right, going with this diagnosis or going with this level of disability you need
these levels of services because they have changed enormously over the years and I
know that if we were having a conversation 10 years ago when he was [a toddler] it
would be a very different conversation …
– Parent
Service models and challenges
Detailed commentary was made by the participant groups around current difficulties in the disability
and health sector. It was in these discussions that many practical ideas were raised by
physiotherapists and policy advisors, and the parents’ stories of day-to-day difficulties and how they
would like services to be coordinated were shared. Commentary can be broadly divided into service
restrictions and acknowledging best practice models.
Service restrictions
Service restrictions were a source of frustration for participant groups. Participants described an
existing system which was impeded by a general lack of paediatric physiotherapy services that
families could access.
[We were] Unable to access regular therapy input when Sarah* turned 8 … but there
was so much value in still having regular physiotherapy, to guide us in what we were
to continue to do at home to maintain the skills that she had acquired for example,
supported sitting balance and to maintain her musculoskeletal health for comfort and
aesthetics.
– Carer
Firstly, I think there seems to be a lack of physiotherapists that work in the area … the
resourcing around professional development needs, the resources of positions compared
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to the numbers of patients is extremely poor.
– Policy Advisor
At the moment access is a huge issue, just in terms of where staff are, what their skill
sets are, and the technology available to support that … is there a physio there, and does
the physio have the skills?
– Physiotherapist
Policy advisors in particular reported that working with children was less popular in physiotherapy
than in other allied health professions. There was concern for the demand placed on clinicians who
worked in paediatrics because of the specialised knowledge needed, and the importance in properly
addressing and monitoring changes in children with disabilities (many of whom have health-related
co-morbidities)
There’s a real lack of community and private allied health services for children and young
people … so more support for establishing multidisciplinary teams and roles I think is
really important … so it appears as though there’s a lack of bodies on the ground and even
with existing resources, there’s still a significant gap of whether or not service is provided.
– Policy advisor
Concern existed around being able to offer a service particularly during the school-aged years.
Participants described most services being available between the ages of 0–5 years and very few
offering regular support beyond this time.
I think physiotherapists [numbers] are quite limited with no physios in schools that I
know of and certainly when our children get to school we have a little window … to
perhaps do stuff but in the next age group up there’s a huge gap.
– Physiotherapist
There’s a lack of services particularly it seems for children over 5 years to provide one-onone or group type services …. A lot of current services have a focus on early intervention,
which is great, but once children reach 4 or 5 there is certainly a lessening of, or no, one
on one actual therapy.
– Physiotherapist
Some physiotherapists described how they tried to make their clinical services flexible for their
clients. One practice implemented a clinical triage process so that all new patients were consulted
within a few days. Another physiotherapist specifically located their practice near a café so families
had an easy option to socialise with each other after group physiotherapy because this was
requested by many clients. However, for many other participants, costs of running services, staff
ratios, and client eligibility parameters hampered a flexible and responsive service model.
Repeated frustration was also voiced around difficulties with ordering and accessing equipment for
children. Prescribing equipment had the added challenge of children growing and changing rapidly or
needing temporary provisions following elective surgery to ensure optimal outcomes. What was
perceived as non-urgent equipment by some schemes (for example, a manual wheelchair to
complement an electric wheelchair) was also critical for helping children perform in leisure activities
and social purposes, and this can be expensive and time consuming for families to access.
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Equipment is needed to support participation. What families are seeking are the
devices or equipment that help support basic comfort and dignity … this isn’t just
about convenience, it substantially reduces the manual handling of both the child and
the parent. For a child with chronic pain this is also a significant factor for quality of
life.
– Carer
The challenges of accessing equipment were closely linked with concepts of participation, inclusion,
and quality of life. Equipment was highly valued by families but more often than not delivered in a
way that was not timely. This meant that therapists and families were often getting equipment which
would only last a small amount of time before the child grew or changed.
We met with two or three different people that came that showed us all the ins and
outs of a pram and we worked out that those weren’t the right ones for us, and so that
was ordered from Austria or somewhere, but it took six months to come, so we were
trying to pick what size would be suitable for him by the time it came, and then by the
time it got fitted to him and had stuff added, it was a long process to get the pram.
– Parent
Receiving equipment was also a frustrating experience for many families because it was often only
one piece of equipment was seen as essential. The reality was that parents and some
physiotherapists felt multiple pieces of equipment for different needs were required, some
permanently and others on loan. Not having the right equipment was a major barrier to full
participation for families.
Opportunity to purchase equipment that is seen as ‘not essential’ … Travelling with a
child with a profound disability is really not possible. Families miss out on significant
events such as funerals, weddings, births for those out of the immediate areas ….
Consider this, for just a weekend away the following is needed: hoist, shower chair,
change surface, accessible vehicle. The ability to hire a wheelchair accessible vehicle is
extremely difficult, and quite often, simply not available. Furthermore there is the cost
of having this equipment transported or hired at the destination. Funding to help make
these types of things possible would be life changing.
– Carer
Some physiotherapists were concerned about the current mechanisms of funding for equipment
because their attempts to support families’ choices were limited by regulations of the number of
pieces of necessary equipment provided or the cost. One participant described the difficult decisions
needed to meet equipment guidelines but also support families’ choices.
Currently the provision of equipment is very tightly controlled with the application of
eligibility criteria to cover what is seen as essential equipment. Some things are out of
scope … I have had a family who wanted assistance to install a lift as the only access to
their home was a steep flight of stairs and moving house was not a possible solution for
them. This could not be funded, however this equipment … allowed increased carer
respite (Nanna could not carry the child down the stairs in case of an emergency so could
not babysit the child in the home) and decreased long term physical risk for the mother,
in terms of back care, not to mention safe access to the house for the child … hopefully
the NDIS will allow people to prioritise areas of their life as they see fit.
– Physiotherapist
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One parent also described the family’s frustration of being made to repeatedly ask for equipment to
support their child’s participation in the community.
Well we’ve been unable to have a proper manual wheelchair funded for her because
she uses the powered wheelchair. There’s quite a lot of occasions where we can’t use
that and she needs certain seating and that sort of thing in the manual chair and we
haven’t got any funding for that because she’s already got one so that’s been a bit
irritating. It makes you feel like you’re asking for something you don’t need.
– Parent
Participants recognised that a challenge for the new national disability scheme was to support
parents and children to access equipment needed so they could fully participate in their community,
rather than rationing equipment to one mobility device. Physiotherapists are well placed to advise
and collaborate with families on what equipment may improve children’s participation at home,
school, work, and in the community.
Participants stated that other challenges with the present disability sector arrangements included


Disgruntlement of parents and carers whose children have been on waiting lists to access
allied health services for months or even years
Compartmentalised services that do not work effectively for children with complex needs.
One physiotherapist noted
The services are compartmentalised in South Australia so you tend to have to satisfy
eligibility criteria to get in to particular services or geographical criteria so it makes it
difficult sometimes for families to access particularly if their child doesn’t fit neatly into a
nice diagnostic category.
– Physiotherapist



Appointments for clients were rationed and there may be premature discharging of clients
from services
There were unclear or changing parameters around children with disabilities who have an
acute event or elective surgery, and which services provide ongoing intervention and
equipment with these changes
Transition points over childhood were especially disjointed when there were no consistent
therapists available, for example
The bureaucracy was incredibly frustrating and it was incredibly frustrating the
transition from preschool to school and because they were in different regions we had
to change therapists, and because [child] was a [organisation’s] client at the time and
they had an internal restructure and they changed their service divisions and there
was no continuity of therapy whatsoever, and so it was incredibly disjointed.
– Parent

It can be very difficult to provide a consistent service, or at the very least education sessions,
to those areas that are geographically dispersed.
These challenges were largely agreed upon by the three participant groups but were understood in
different ways. For instance, parents commented that rationed appointments led them to feel that
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they could not access what their child truly needed. Physiotherapists felt hampered by what they
perceived as service inflexibility, which meant they could not deliver the volume of physiotherapy
services to clients in a way they felt was appropriate or family-centred. For policy advisors it was
difficult to balance effective and flexible service delivery models under present budgets. It suggested
that a system overhaul, as proposed with the national disability scheme, was a necessary approach
given the complexity of the problems raised. Participants overall were looking forward to a system
that recognised the complexity of caring for a child with disabilities and how this may influence the
way some services adapt in the face of increased funding or resource allocation to children.
Best practice approaches
Best practice in paediatric physiotherapy and disability services were considered based on reflections
around service challenges. Physiotherapists and policy advisors identified several key factors that
determine quality service provision, including



Large numbers of professionals working in isolation is not best practice – services need to be
well linked and coordinated
The profession values quality factors such as building mentoring and supervising
relationships within specialised clinical areas
Clinician availability and appropriate numbers of positions are core elements of quality
service provision. One participant noted
If you are particularly passionate about paediatrics, it’s incredibly frustrating to sit in a
generalist role … every time there is a staff shortage, you get pulled from paediatrics …
keeping people who are keen on paediatrics, you need to have a paediatric role for them
and it needs to be a safe role.
– Physiotherapist



Provisions should be made to fund and support case conferencing between services for
more coordinated care, especially if this is requested by families
Some participants believed that best quality practice should permit bursts of therapy across
the lifespan to address changes the child is experiencing due to growth, new or additional
functional goals, or changes in the nature of the child’s disability
Services need to be equitable and not necessarily based on a child’s diagnosis but rather the
whole family’s functional capacity. For example
… the disability for the child is that they have [a particular diagnosis], but the actual way
to improve that child’s life and functioning and participation in the community might
not be the disability, it might be the family situation … the dynamic theories around child
development are not focussed on one profession but that collective approach.
– Physiotherapist

Services need to be well resourced – both in volume and quality of staff and physical
resources (infrastructure, equipment).
The need for a holistic, integrated and coordinated disability sector was well summarised by a carer,
who reflected on what would be ideal.
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The NDIS should provide the opportunity for the extras that promote comfort, dignity
and quality of life … [it] should be rolled out in a way that requires service providers
from [non-government organisations] and [government organisations] to coordinate
and communicate to avoid fragmentation, duplication or loss of services. The NDIS
should not be seen as a ‘fiscal fix’ to the complexity of accessing services for people
with complex needs. Throwing money at a problem is not going to be a solution that
enhances options. The NDIS needs to enhance and supplement what exists.
– Carer
According to clinicians and policy advisors, quality physiotherapy service provision requires staff to
be retained in the sector and given appropriate incentives to do so. The participants also indicated
that they value the opportunity to form consistent and longer-term partnerships where appropriate,
including supporting families at key transition points across childhood as they emerge and this may
depend on individual situations.
Fostering positive communication and reporting channels
Physiotherapists and policy advisors acknowledged that reporting mechanisms for DisabilityCare
Australia were unknown to them at the time of interview and many of their perceptions of what
reporting may entail was influenced by their experiences of other government packages such as
Better Start for Children with Disability. They were aware of and accepted some additional
administrative processes that may emerge from the new system, but sensitivity around the reporting
mechanisms to DisabilityCare Australia appeared to be critical in building a sustainable workforce.
Something that [DisabilityCare Australia] has to consider is that busy practices could
just opt out of delivering the services if the paperwork and the stress of it is too onerous
… Yes, they have to be accountable but if it becomes adversarial, people will opt out, and
the good people will opt out because they just can’t be bothered with it.
– Physiotherapist
Some participants described a system currently in place which is dominated by assessments of
children, rather than ongoing hands-on therapy provision, and this too had ramifications for the
reporting of information.
I think the kind of fostering of communication, but without it being onerous and without
therapists spending all their time just doing an assessment and coming in and doing
another assessment, and then coming and doing another assessment … you have to
justify what you’re doing, you have to [pause] and we’ve always had to do that …
– Physiotherapist
Reporting processes should be clear, logical, purposeful, and streamline access to different
professions or services. Reporting also needs to be appropriately distributed to the best-placed
health professional to manage the child and some physiotherapists recognised that this may be
them.
What also needs to be looked at is the number of GP visits or sign offs from medical
professionals … perhaps that just needs to be clarified, who is going to ‘sign off’ or can
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other health professionals refer [within DisabilityCare Australia].
– Physiotherapist
Initially [some government initiatives] wouldn’t accept a diagnosis in the doctor’s notes.
If the doctor had a letter from the paediatrician saying that the child had Down
Syndrome that had to be sighted and just a lot of stuff that these people have got enough
on their plate to begin with, I think.
– Physiotherapist
Reflections on administrative reporting processes were also shaped by discussion around fostering
positive communication channels between families, clinicians, and the DisabilityCare Australia
scheme based on what currently works and what does not. Considerations were

Parents wanted a personalised and simplified approach to therapy and services’ reporting
frameworks, for example
Reduced paperwork to access services and a better knowledge of services that are
available … how much effort will it take families to justify what they need, if there will
be assistance and proactive suggestions if additional therapies in situations where
people don’t know what is out there?
– Parent


Parents and physiotherapists equally sought a positive professional rapport, and the scheme
needed to offer families additional service options if this rapport cannot be established.
Clinicians and policy advisors noted that this could be challenging if there are limited
numbers of physiotherapists who work with children in the disability sector
Parents were seeking consistent messages from people who provide information on funding.
Tiers of communication anticipated by the participants included parent–therapist, therapist–
therapist, therapist–DisabilityCare Australia, and parent–DisabilityCare Australia. Strong teamwork
skills were encouraged within the disability sector in order to meet DisabilityCare Australia’s
intention to minimise people having to repeat their story in the assessment and planning process.
The big thing that needs to happen is parents or individuals or carers do not want to retell their story, so that’s been a huge driver for change.
– Policy advisor
Team communication so that any overlap of roles is purposeful not contradictory … the
fostering of teamwork I reckon would be the most important thing. With the family and
the child as part of the team …
– Physiotherapist
Physiotherapy and policy advisor participants also recommended that DisabilityCare Australia have
regular and clear discussions with professional bodies (perhaps through the Australian Health
Practitioner Regulation Agency or Australian Physiotherapy Association) to ensure that policies and
processes are consistently communicated.
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Building workforce quality
Participants reflected on how to build a quality workforce that could be responsive to children’s and
families’ needs while providing a rewarding and secure career pathway for the clinicians who train in
paediatrics.
Some of the workforce issues discussed were





Paediatric physiotherapy is a specialised area of practice that requires ongoing professional
development, regular job-based training, and can be an emotionally demanding area of
practice
There was a lack of financial and non-financial incentives to attract physiotherapists into
paediatrics
There were not enough secure or stand-alone paediatric-specific positions
There are limited career-progressing opportunities in paediatric practice
There is a pervasive perception that the management of children is congruent to the
management of adults, which is not the case.
Clinicians need to have a really good understanding of family focus and child
development.
– Physiotherapist
If you are going to grow services with those willing to work, particularly in rural and
remote areas, I think you need to have a mechanism to build them up, support them and
build a capacity and maintain them.
– Policy advisor
Some policy advisors anticipated a sizeable increase in demand on physiotherapy services with
DisabilityCare Australia’s implementation. Critical to building a large enough workforce to cope with
demand was incentivising paediatric physiotherapy practice with regular opportunities and support
for professional development, incentives for specialising in paediatrics and moving to more
geographically isolated areas, and rewards for committing to further education. They acknowledged
that workforce challenges were outside the scope of DisabilityCare Australia but there were
opportunities where clinicians could be more appropriately remunerated for their skill set.
Finally there is an avenue where allied health can charge what is appropriate for their
level of expertise. And so I think there’s a real cultural shift because historically allied
health have been thought as almost providers for nothing.
– Policy advisor
Other workforce reflections included


There has to be parity (with other medical and health professionals) and non-financial
incentives provided to allied health staff across all sectors
Clinicians should be entitled to receive funding or reimbursement for professional
development opportunities that help to deliver quality services as part of the DisabilityCare
Australia scheme
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

Physiotherapy services need additional, ongoing supports for costing their services
appropriately to fit with the DisabilityCare Australia model
Physiotherapy staff need appropriate remuneration that reflects their specialised areas of
practice and the requirement for ongoing up-skilling to be effective practitioners.
Physiotherapists and policy advisor participants were uncertain about how clinicians’ details and
qualifications would be publicised by DisabilityCare Australia. For example, some government
websites list registered health providers and a few participants were unsure if this would be the case
for the new scheme, and how much of their practice they would be able to describe to consumers on
portals such as the DisabilityCare Australia website. Others were concerned that the likely surge in
demand on physiotherapists may see families turn to health professionals who do not have the
depth of skills or experience to effectively administer services for children. For example,
There’s not a whole lot of paediatric physiotherapists … so you could potentially draw in
a whole lot of people that aren’t qualified, so that would actually be a negative … to make
it more client driven I think is good, and for us to be more receptive to what the clients
are requesting and feel like they need and want is good.
– Physiotherapist
Even if particular practices or organisations provided a paediatric-specific service, concerns were
raised by clinicians and parents around high staff turnovers, the frustration of having to re-tell the
story, and getting children to forge a connection with clinicians that may or may not be working in
the sector for extended periods.
It was very difficult to get hold of people in accessible times, for example, a lot of
them won’t come for appointments after school and they make you do appointments
during school time that just means they’ve got something else to catch up on and that
they also have enormous staff turnover which is just hopeless ’cause they learn all
about your child and then they disappear and you have to start all over again.
– Parent
Therefore, physiotherapists and policy advisors believed that appropriate professional development
incentives, supervision structures, and remuneration were critical in building a sizeable and
experienced paediatric physiotherapy workforce. Supporting multidisciplinary team structures, and
working with existing staff and networks were also important to them because this aligned with best
practice.
There would be opportunity to create a role which is that multi-disciplinary team type
role for allied health to be a key person to do that. I could imagine that would be
attractive to allied health to do so not as a lone provider, but to actually take on more of
that role of having an understanding of different professions … being part of a system
means that they get professional development, they get supervision, they get higher
duties opportunities, they get the opportunity to take undergraduate students so that’s
built in to where it is that they work.
– Policy advisor
Physiotherapists commented that effective interdisciplinary liaison demands time and availability
from all parties. To do this consistently, paediatric clinicians felt it appropriate to have allocated
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hours to coordinate the integrated delivery of care. A few policy advisors and clinicians noted that,
ideally, funding models in the government, non-government, and private sector could be structured
to foster workforce innovation through training, professional development, and flexible service
delivery models. The introduction of DisabilityCare Australia may be a catalyst to further encourage
government and non-government sectors, as well as private enterprises, to collaborate more
consistently in meeting children’s goals.
Considering evidence-based practice and areas of advanced scope
DisabilityCare Australia has acknowledged that “while an emphasis on interventions that are
effective and beneficial for the participant is appropriate, it is also important to recognise that
existing evidence is often limited” (National Disability Insurance Scheme, 2013). This was a stimulus
point for many of the physiotherapists and policy advisors. Physiotherapy has a long-standing
commitment to scientific research to support interventions and approaches to care. Areas described
during interviews that had a particularly robust evidence-base included specific conditions (for
example, management for cerebral palsy) and equipment (for example, seating or orthotics). But
some clinicians and policy advisors cautioned that the evidence-base must be used cohesively with
physiotherapists’ clinical reasoning and professional judgement, which are central to building a
responsive and flexible approach to client management.
We assume that there is evidence and that it is objective but in disability … it is about
partnership with parents, so much is about the child and the nuances that are not
repeatable … so it’s a very organic thing.
– Policy advisor
Participants were mindful that the scope of paediatric conditions meant that targeted research was
limited to some of the bigger clusters of conditions but this did not mean findings could not be
extrapolated to other clinical scenarios.
When you are getting down to the smaller groups, where there are only a couple in South
Australia, the research is limited, but the research for early intervention is there.
– Physiotherapist
Participants encouraged the ongoing collection of evidence and data for interventions and client
care, and some practical ideas around building the evidence base are discussed later. But recognising
the individuality and complexity of children with disabilities’ required professional judgments to
remain central to effective client management.
Closely aligned to evidence-based practice were comments around the potential for changing roles
and responsibilities of physiotherapists working in paediatrics. Participants reflected on where roles
could be advanced.
We all agree on now is that pushing extension of scope for its own sake doesn’t work,
there has to be a need identified that meets the system need and that has to drive it first
and the role follows …
– Policy advisor
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Areas where there were opportunities for advanced scope of practice included




Injecting rights and management of botulinum toxin-A for muscle spasticity in disorders such
as Cerebral Palsy
More counselling-based interventions or psychosocial supports as part of a holistic
management of child and family
Limited pharmaceutical prescribing pathways, working closely with paediatricians and
neurologists
More transdisciplinary career pathways, such as developing an ‘early childhood clinician’
role, which is still grounded in physiotherapy practice but may explore other nonphysiotherapy fields of practice as well.
Not all clinicians were interested in advancing their clinical scope of practice as their client base and
areas of interests did not demand changes to their scope. Other participants acknowledged that
developing advanced scopes of practice is an ongoing process and one that is part of the national
health workforce reform agenda. As primary contact practitioners physiotherapists have knowledge
and skills that could underpin development of advanced roles to deliver more streamlined services.
However, what features of paediatric physiotherapy may be attractive to the future workforce, and if
there are more efficient and effective ways of structuring services and care pathways, were
considered by some to be a useful reflection for ideas around workforce innovation.
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Key messages: Issues and reflections on service quality
 Changes to the disability sector should embrace a lifespan perspective on care.
Changes should be sensitive to various transition points, periods of growth, and
changing goals over the whole of childhood.
 There are many service restrictions in the current disability sector including
o not enough services or experienced physiotherapists in paediatrics
o services with arbitrary cut-off parameters and eligibility criteria
o a lack of access to services during school-aged years
o compartmentalised and unlinked providers
o inappropriate waiting list times
o protracted processes to access disability equipment which must be fully
considered during the roll-out of DisabilityCare Australia.
 Reporting and administration processes need to be clear, logical and not onerous on
clinicians or families. Quality reporting and distribution of information requires time
and sufficient funding to ensure that it becomes a simplified component of clinical and
business practice.
 A variety of incentives and workforce strategies should be in place to encourage
physiotherapists to work in paediatrics. It is recognised that there could be a large
demand placed on a relatively small pool of experienced clinicians and they need to be
appropriately remunerated and supported to effectively manage their workloads.
 There needs to be support for and investment in evidence-based interventions and
practices to be used in appropriate situations as has already been identified by
DisabilityCare Australia (National Disability Insurance Scheme, 2013). These need to be
closely aligned to (and not in place of) clinicians’ own experiences, knowledge bases,
and clinical reasoning processes. This supports an approach of treating the individual’s
functional capacity, rather than isolating intervention to the diagnosis only.
 There may be some areas of extended or advanced scope within the physiotherapy
profession that can influence the efficiency and effectiveness of paediatric disability
care and streamline service delivery ensuring that children and carers receive the right
care at the right time and place.
Issues and reflections on service choice
and access
This section explores themes that were raised around accessing physiotherapy services and
exercising choice and control over services used. One of DisabilityCare Australia’s central tenets is to
provide families and individuals with disabilities choice and control. We asked participants to
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consider what features of this approach are feasible and valued, what challenges may occur, and
how best to support families to feel empowered as they navigate the DisabilityCare Australia.
Vulnerability and advocacy
A clear message from physiotherapists and policy advisors was that the degree or type of disability a
child has does not necessarily reflect how well the family unit manage their situation. While
DisabilityCare Australia has identified presumption of capacity to be a feature of the scheme,
participants did not use that term or they were unsure how an individual’s capacity would be
determined. While it could be expected that the more complex a child’s disability is, the more
demanding and draining it can be for families, this was not always the case. Some physiotherapists
described families they knew who had high-levels of resilience and problem-solving when managing
their children’s complex disabilities, whereas other families found it harder to manage with what
were perceived to be minor or more straightforward disabilities.
I have found over my time of working that that there will be children who have significant
disability and I would not go home and worry about them at night, and there will be
children with small disability and I would think, oh, you know, I would really worry and
I’d think in the end what’s the difference? And it was mostly around the capacity of the
parent and the family, the coping strategies, the resilience, the ability for them to
advocate for their child.
– Physiotherapist
The child and family unit cannot be easily separated out from one another. Physiotherapists and
policy advisors advocated for a disability scheme that allows them to be responsive and thorough
with client management, and not a system that responds superficially to what a specific diagnosis
might entail. For instance, they described it as difficult to meet families’ needs if limits were placed
on the frequency of therapy appointments depending on the type of disability a child may have.
While it is true that a particular diagnosis allows health professionals to anticipate what care and
interventions may be needed over the life-course, it does not define the child or the family, or
necessarily indicate how well a family is functioning. Parents and carers described in various ways
phases of upheaval, concern and worry, and some talked about how linking in with physiotherapy
services gave them the necessary motivation to follow through with recommendations, strategies,
and activities for their child. Several physiotherapists and policy advisors suggested that children and
their families need a disability scheme that more consistently acknowledges the bio-psychosocial
aspects of disability.
Part of the effect of having a child with disabilities is the environment influences the
child, but the child also influences the environment and the impact of the child of the
family …
– Physiotherapist
The stressors described by parents and carers were varied, ranging from exhaustion with their day to
day routine, through to frustration with the layers of needed services. Parents did not appreciate
being passed around trying to find information and services for their child. Physiotherapists and
parents acknowledged that many families were exhausted from working with different levels of case
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management and service providers. For some parents who have children with highly complex needs,
their day to day functioning was entwined with stressors on their own health and wellbeing.
I think that the grief thing is quite a difficult thing in it too, I think it just adds a whole
level of – I don’t know – intensity or exhaustion to it all, and it’s not until something
goes wrong that you realise you’re dealing with it all the time but you’re just trying to
focus on that because that’s not going to help you get through the day, it’s going to
rob you of all those joyful moments.
– Parent
Physiotherapists and policy advisors were also acutely concerned about how many families may be
vulnerable when accessing disability services and open to exploitation. Physiotherapists were
particularly concerned that some families more than others may seek out services and interventions
that are not clinically appropriate for their child’s disability.
It’s one of those emotive areas where everyone sells their idea of how they can help
children and most parents will buy it if you use the right emotive terms.
– Physiotherapist
I think there is a real issue around the vulnerability of parents to aggressive marketing by
service providers. So I think parents who aren’t well [informed], they will be particularly
vulnerable because they won’t be able to make really considered [decisions] … giving
them a skill set around evaluating from an evidence-based point of view would be really
important.
– Physiotherapist
An awareness of the risks of exploitation and vulnerability of families did not mean that
physiotherapists and policy advisors disagreed with families having choice and control over
interventions and services. Choice was recognised as a valuable motivator and empowering for
families.
Positives for parents would be the empowerment – they feel like they are in control of the
process somewhat, family focussed. They can choose where in their local area [they can
access] or they may decide to go outside their area but they can choose it – hopefully it
might be more accessible to them or easier to access.
– Physiotherapist
However, some physiotherapists and policy advisors believed that many families would value or need
some assistance to understand the different roles of health professionals and to make informed
decisions for their child’s care. Families exercising their rights over who and what services to access,
and being appropriately funded to do so, had the potential to minimise their feelings of guilt,
embarrassment, and frustration with having to fund costly yet necessary interventions for their child.
An example was provided where it was both demoralising and embarrassing for families to default
on payments for therapy, and challenging for clinicians to seek appropriate reimbursement for
services, perpetuating a cycle of shame for both parties.
It is very hard to put out your hand and say that will be [this much] for families that you
know can’t afford shoes for their children and so a lot of the children that come here have
been seen for very little money over the years, and it’s really good that now there’s an
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opportunity to be remunerated for that without families feeling they have to be beholden
to you … they would often make you a cake or do something nice because they felt a bit
guilty.
– Physiotherapist
Parents and carers were less concerned about any perceived vulnerability on their part to make
informed choices, but were concerned that DisabilityCare Australia may see some service providers
increase their costs. Parents were aware that under Better Start for Children with Disability some
health professionals added loadings to their costs. Parents sought clarity and transparency around
why these costs were incurred and whether they were appropriate.
We initially purchased some services … but they wanted to charge for an hour of travel
when they were seeing other kids at school at the same time, so the travel costs
weren’t being proportionate I guess is what I’m saying. I guess that’s something and I
have no idea how they are going to manage all of that so that there can be some
apportioning of travel costs when somebody visits for instance three or four kids in the
same class because otherwise that’s just rorting the system isn’t it?
– Parent
But a few physiotherapists who had experience with registering for different healthcare initiatives
noted that there are genuine cost increases that come with coordinating and assimilating
government packages into their businesses.
[It] requires one of my staff to sit down for half a day every now and then and just go
through that, and then do it again. And then, we had to send in quarterly reports … not
that they’re hard, but just keeping handle of the data and it was just the different ways of
paying now are so varied for us … so for me it does require more admin staff really to
control that and to monitor that. So I would, us being prepared for NDIS, will be
revolving around that, in regard to making sure we’re equipped mainly from a body point
of view, having enough admin staff to do it would be the main thing that pops up … all of
that takes admin time and more money from my point of view, so I’ve got to prepare for
that.
– Physiotherapist
Funding administrative mechanisms was a necessary additional cost to ensure that appropriate
information was provided back to the Federal Government in a standardised and coordinated way,
and that businesses and services were paid through the correct mechanisms. However, parent and
carer participants were clear that they wanted explanations about why certain costs had increased.
There may need to be a reporting procedure to show that any price modifications are appropriate
and not exploitative.
Perspectives on choice
Participants considered what it meant to have choice and control in a national disability service. On
the whole, choice was embraced with enthusiasm because (1) it would allow parents to regain
control over their child’s care and (2) families could be more responsive to their child’s needs. Choice
was a concept that was well-recognised by participants as one of the defining features of
DisabilityCare Australia.
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For parents and carers, choice was central to a workable disability scheme. It was helpful to, “not feel
like a charity case” as one parent described and was closely linked to an overall sense of
empowerment.
[Choice] means that families can access what they need outside the current
constraints of government-funded programs … It means that families may be able to
use this money to help improve their quality of life. Having autonomy over this is a
highly empowering thing, and enables families to guide what they uniquely need. It
also guarantees a greater degree of certainty for families attempting to provide what
their loved one needs.
– Carer
For physiotherapists and policy advisors, choice also meant ensuring that sustainable professional
services would be in place so that true choice could be delivered. Having enough clinicians to provide
the services sought and establishing clear advocacy pathways to help parents make informed
decisions about interventions were keys.
It’s all well and good to say we’re going to have this new service and its funded and
parents can choose, but it’s still just me in my position … I think it is interesting that a
lot of focus is on flexibility and parents being able to choose because the reality is in the
country they won’t be choosing because there just aren’t enough options.
– Physiotherapist
Some physiotherapists and policy advisors hoped DisabilityCare Australia would support those
families who need a lot of assistance in navigating the disability sector and respectfully stand back for
those who are independently managing their own care.
I think the system needs to recognise that you’ve got people at all those levels. So don’t
mollycoddle the people who are their own advocates and who are strong and feeling
great. But don’t abandon the people who need to be hand-held, there needs to be options
for both.
– Physiotherapist
I think it’s going to be hard to work out where to draw that line between someone else
makes your decisions or you make the decision or you share it. I know for me I’m very
happy to have complete control over it. I’m not sure if everyone will be too.
– Parent
There was also comment from physiotherapists that many of their past clients did not know what
therapy services they wanted, especially in the early stages of diagnosis, and sought physiotherapist
assistance to help them identify goals and areas for intervention.
[DisabilityCare Australia] have to be able to reach out to families and actually educate
families about what is possible because most families, or a lot of families, often won’t
know that because having a child with a disability is a completely new experience for
them. So it’s like going to a country where you don’t know any of the rules or what the
possible things to see or look at are, or want to do, and so you need to have some
information about that first before you can make choices and decide …
– Physiotherapist
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Choice in itself was not a contentious issue for the participants, but only if the appropriate
safeguards were implemented to ensure that through the promise of choice, families were not made
vulnerable to exploitation or misinformation. Some of the parents and carers worried that what they
perceived to be unique and appropriate for their circumstances may be frowned upon by various
levels of administration. They were looking for reassurance that they could determine their child’s
management needs.
I worry that the NDIS panel won’t see the same things as me as essential. Not all
mainstream things work for my son …
– Parent
It all sounds good [to have choice]. The bad side would be being knocked back by lack
of understanding by the person administering our plan.
– Parent
Empowerment is linked to confident or successful choices for a child’s care. With these choices easily
accessed information, open-mindedness around parents’ and children’s values, and the ability to
make variations to plans as management directions change are necessary. It was positive that the
current information distributed by DisabilityCare Australia on choice and control is congruent with
many of the descriptions offered by participants. Continued consideration of the perspectives of and
feedback from families and physiotherapists as the roll-out is undertaken is commended.
Rural and remote access and service sustainability
Physiotherapists and policy advisors discussed how to equitably and efficiently provide services to
children with disabilities who live in regional, rural, and remote areas. Providing quality paediatric
physiotherapy services involved strategically managing the geographical isolation and understanding
that services should align with the local perspective. One particular challenge around choice for rural
communities was the low numbers of service providers who could provide children’s physiotherapy
services.
My current waiting list is long, and that is without disability clients. So that’s fine, give
people funding and tell them they can access our service, but it’s still just me!
– Physiotherapist
Being able to build and sustain a specialist paediatric physiotherapy private practice was often not
economically viable in rural areas, leaving the public sector to absorb the work. But this was
countered with experiences of paediatric workloads not being seen by public sector management as
a clinical priority in the face of budget cuts or staff shortages and changes, or positions not being
secure enough for clinicians to provide this specialised field of practice. A local perspective on
physiotherapy care was important and a key to proper uptake of services by families, because
services were specific to the community’s resources and clinician availability.
Choice is nice if you’ve got one, but that is not how I would sell it to a country person
because for them, they’re going to go, “That doesn’t apply to us” … I think they often just
value having someone local that they can come and see and get an answer.
– Physiotherapist
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Physiotherapists and policy advisors felt that investing resources and incentives for staff support
were important in making the most of what were some effective multidisciplinary team structures in
non-metropolitan areas that already existed.
Community health services that provide early intervention where they have a
multidisciplinary team … they have a really nice model of being able to work with families
and children. Unfortunately they do not get enough funding to do it … I think those rural
early intervention services stand out really well. If they had more resources they would be
able to meet the needs better.
– Physiotherapist
Participants described experiences that families and physiotherapists in non-metropolitan areas may
have, such as


Lengthy waiting times for accessing physiotherapists due to the lack of children’s services
Travel to regional centres or metropolitan areas to access physiotherapy services was an
additional burden and stress for families and carers
Initially we used to drive in for an appointment with the team of [pause] it was a
physio and speechie, and there were three professionals, I think. So we’d drive in for
an appointment, but it was so crammed trying to cover all three areas and not exhaust
him.
– Parent


The challenge to provide comprehensive, timely, and culturally sensitive therapy services to
children and their families who identify as Aboriginal or Torres Strait Islander
A perceived lack of well-funded, well-incentivised rural clinical training opportunities in
paediatrics.
I think we’ve got to [ensure we’re] caring or treating or assisting the individual in their
local environment where a local practitioner is best placed to do that.
– Physiotherapist
DisabilityCare Australia has already identified that choice and control may be compromised without
access to an appropriate supply of service and support options. Regional, rural, and remote
sensitivities for clinical practice and service access should be addressed within the broader goals of
DisabilityCare Australia. What is appropriate and applicable in a metropolitan setting may not be as
relevant to a smaller community and should not be promoted as such.
Applying technology to DisabilityCare Australia
The role of technology in service choice and access may be critical. Technology can help families
connect with each other and clinical services, as well as being an important conduit for inter-service
communication. One participant stated that a clear DisabilityCare Australia website was a critical first
step.
Whoever is going to be accessing the information will be able to go and find out at one or
two clicks what they need – that would be a big help ... to capture physical, psychological,
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health and wellness components of it …. I see a great opportunity to link into professional
associations’ websites and other websites – even condition-based websites where there
will be information but that means there will be some infrastructure or some money
given to those associations or groups to get their websites up to speed and being able to
talk. So I see the NDIS website as being a portal – very much a portal but having all the
information about funding and the way you do it – the process on there but that access
to information and services – it will be a conduit.
– Policy advisor
Fast and effective technology (such as online information, apps, web links to health service providers,
and other resources) was seen as relevant and timely for younger people because this was their
preferred mode of accessing information. The potential was also there to connect families to other
families experiencing a similar journey through the disability sector. It was even proposed that an
online forum could be established to connect families who are in similar situations of accessing
services or have similar questions and concerns.
I think like a parent’s forum of discussions…from the day they become eligible for NDIS
to receive their funding, to being confident that they’re accessing the right services for
their child and the right frequency and stuff. All the planning and preparation and
discussions along the way for families to be able to read that and see that timeline, I
think would be really important.
– Physiotherapist
Technology could also support service access via the use of tele-health facilities. These facilities
needed to be well set up, high-speed, and readily accessible across the State. Potential was stated for
case conferencing between clinicians to become a more regular practice, to consolidate multiple
occasions of service in some circumstances, and give regions without consistent access to specialised
services a connection between clients and clinicians with the right skill set for the child.
I think there’s lots of potential for I guess health service stuff to be done remotely. So
perhaps if I was seeing a client and we had their paediatrician on the video cam, then
that would be a good way to have us both in the same room. That wouldn’t happen
otherwise … So I think there’s some real potential around getting groups of people to be
able to talk about the child and family with the child and family when you’re not all at
the same place...I mean it’d be fantastic to do even between service providers because,
again, if you’ve got parents choosing to access me as a physio and then a different
speechie from somewhere else and a paediatrician from somewhere else, it’d be a nice
way to try and keep everybody in touch.
– Physiotherapist
Parents in this study valued interdisciplinary service provision at the time of the appointment when it
was required. Proper applications of technology was suggested as one way that this can occur
between different clinicians, organisations, or geographical regions. Tele-health and internet-driven
technology could also be an effective way to up-skill clinicians and offer professional development
opportunities around the country and virtual consultations between peers. Opportunities described
include
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


Professional development webinars
Virtual consultations as a means of peer supervision
Well managed e-learning opportunities (for physiotherapists and families) with the options
for interactive discussion networks.
Cautionary notes around the use of technology were that it should not be the only means of families
and clinicians accessing information about DisabilityCare Australia. Some families did not have
reliable access or interest in using online resources and alternative arrangements for information
sharing should be available. Ideas included regular information and education sessions, a
DisabilityCare Australia telephone hotline, and clear booklets outline how the scheme operates.
Roles for clinical students and allied health assistants
The final theme around service choice and access was the potential roles for physiotherapy students
and allied health assistants to be an additional workforce source for families to access. Many
participants had not considered the use of these professional groups, largely because initiatives in
place such as Better Start for Children with Disability have required practitioners to be registered
service providers. It was speculated that DisabilityCare Australia may be an opportunity for creative
use of additional workforce sources under supervision.
My physio assistant, my new grad physio, my students can do a lot of the work and it’s
the more qualified person or more experienced person who comes in when they see a
change … in the situation. I think physiotherapy assistants can easily do a lot of the work
especially with a condition that doesn’t change.
– Policy advisor
There may also emerge opportunities for physiotherapy students to have greater, more consistent
exposure to paediatric disability management, which is at present an ongoing challenge when trying
to secure clinical placement opportunities.
Demystify paediatrics to the students, and therefore have them to want to – I can see
many more wanting to be involved in paediatrics than I have seen historically.
– Policy advisor
There are a number of people who have been really interested [in paediatric
physiotherapy], have applied for a new graduate position in paediatrics, haven’t got it so
then they’ve gone into a different area and that enthusiasm is maybe lost and they never
come back into that area, so it’s a matter of trying to catch it and support those people at
a really critical time.
– Physiotherapist
Broadening student and allied health assistant learning opportunities should not come at the
expense of properly qualified physiotherapists being recruited into the disability sector. Rather, it
remains an option to diversify the workforce to provide straightforward assistance to children with
disabilities who are in periods of either stasis or change, and where it may not be appropriate,
feasible or economically viable to have registered physiotherapists providing every occasion of
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service. Additionally, families may not always have the time or resources to provide the right
intensity of therapy in the home environment.
We just found over time that the carers were rotating too regularly and we weren’t
convinced that they were doing the exercises properly so that’s why we’ve changed to
her going to a physio instead. And ideally we would like that service at school or at
home cause transporting her around is a bit of an exercise and adds to the weekly
workload so when that was done at school years ago that was really helpful and also
she is tired after school so it is not the ideal time to do it.
– Parent
It would be a question of educating the consumers that they can get more value for their
money going to a student clinic…it would be really interesting, but I think it would be
worth testing…the universities could get really creative around offering low fee clinics
and marketing them like that.
– Physiotherapist
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Key messages: Issues and reflections on service choice and access

Children with disabilities are a heterogeneous population and the type of disability
(and how a family copes with it) is not necessarily commensurate with the number of
resources and supports required. The scheme needs to be respectful and flexible to
meet the needs of families, and this includes supporting a variety of therapy service
delivery and supporting timely access to services.

For the physiotherapy profession, giving children and families choice must be
supported with strategies to boost the volume and option of services. This is
meaningful across all participant groups. The scheme should provide greater access
to early and continuing physiotherapy interventions, as the demand on paediatric
physiotherapy may increase.

Creative and evidence-based approaches to therapy provision should be effectively
built in to the DisabilityCare Australia system, and acknowledge that all families, at
some point, are unfamiliar with how to navigate the disability sector.

Families need high quality, easily accessible and reliable disability supports, and
social services to reduce emotional and financial strain. This should help develop
optimal home and community environments to allow children reach their potential.
This is especially true with traditionally low-resourced areas, such as rural and
remote communities, where allied health services may be more ad-hoc or
geographically dispersed.

Technology can be effectively used to link families with appropriate services using
tele-health facilities, and help clinicians and services connect between each other as
a way of reducing fragmented service provision.

Consideration should be given to strategically supporting future workforce
development in the disability sector, by making it possible for physiotherapy
students and allied health assistants to support children and their families through
new and viable clinical models, under supervision.
Section 3 – Ideas & Conclusion
Practical ideas and recommendations
This chapter presents the practical ideas raised by parents and carers, physiotherapists, and policy
advisors. Some of the practical ideas are in the form of tangible opportunities. Others are in the form
of recommendations to manage professional issues at the policy or strategy level that are necessary
to improve the usability and accessibility of disability services. The practical ideas can be cross-
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referenced with the qualitative data presented in Chapters 4, 5, and 6 to give context to the
suggestions. A summary is available in Appendix C: Table of practical ideas.
The voice of parents and carers
This section explores the ideas and recommendations offered primarily by parents and carers. It is
written in the first person to emphasise the conviction, depth, and strength of parents’ and carers’
feeling and knowledge.
Relationships
Know about my child and my family.
I want ongoing and consistent care with one physiotherapist. This has the advantage of working
developmentally, as well as getting to know my child on different days and places. It helps to build up
the knowledge of my child in a range of situations and contexts. I don’t want an assessment focus of
health care and my child having to ‘perform’ in an unknown context in front of several unknown
providers.
The technology I carry with me can help. Mobile telephones and iPad apps can be used to record and
demonstrate my child’s achievements. These can be held by both me and the physiotherapist with
appropriate permissions for our privacy. Uploading to YouTube gives my child a valued audience and
creates an opportunity of like-minded individuals to work together especially those with similar
challenges. I’d like to see how other children are doing in their therapy, so I understand where I am
heading and know that things are going OK.
I’d like to tell my story less often. Health information scanned and stored on a USB for me to hold
means I can to take it to appointments or download it onto an iPad or give to my child’s health care
provider. This helps me have our therapy in flexible locations too because I can send images from a
distant location to a health professional in another town, city or country. It also enables me to share
with my child’s school and family what my child can do.
[The] best experiences we have had involve one and one therapy, where the
therapists have time to learn about my son …. He needs people who can think outside
the square.
– Parent
Relevance
Rather than being a series of hoops to progress through, I want physiotherapy relevant to my
interests and contribution to community.
My focus for my child is on living a life that is authentically their own and reflecting their values,
capacities and dreams. I want recognition when times change, like transitions to school, requires
considerations of new environments and people new to me and my child where physiotherapy
negotiates through partnership with my child’s interests and contribution to the school community.
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Key transition times can include home from hospital, transition to kindergarten, primary school, high
school and work.
[Transition to school] definitely needed more planning in advance, more support at the
time and more cooperation of more people – so teachers, child care workers or
nannies … everyone worked – were focussed on it and worked quite hard on it – they
definitely were the most challenging times.
– Parent
I want services provided in a multidisciplinary team, with consistency of therapists over the long term
to know about my child.
If they’re both there in the same room doing the exercises, then the questions come
up and the conversation happens in a way that it doesn’t happen if one of them
consults with you; leaves, and the next one consults with you … I think the fact that
they work as a team, and they run groups where there’s more than one skill set
involved, that’s really great.
– Parent
I can see the value of speech now because the speech pathologist at [my child’s
school] works with every single child by teaching through the teacher. So she actually
gets the teachers thinking about speech, and that’s why it’s a great place. It’s not 5
speech pathologists – only 1 but she works with the teachers in the class rather than
one on one which is great.
– Parent
I want to choose from linking with established school-based teams or working with the
physiotherapist who knows them or assemble my own multidisciplinary team to work with the
school, including curriculum advisors, to make it relevant to my child’s capacities and dreams.
Time
Does it need to be in the same sequence in the same order or change it to be so I learn my child’s
and my own learning styles and interests?
I want an outcome not output focus by matching my child’s and my learning styles and interests.
Change the sequence and the interesting places where physiotherapy happens – the farm, pool,
camp, or ski fields. In small groups, out in the community, sometimes at school, maybe at home, it all
depends on what we are working towards.
Connect me with the right services when I want them, so I can seek advice with respectful practice.
Use the technology that suits me and my child like virtual consultations. If I live away from the
physiotherapist, maybe in a rural and remote area or if the physiotherapist is the specialist in a
particular area, I want virtual consultations available. I also want time for quick check-ins or touching
base, using email or a blog.
A virtual consultation especially in times of stasis – we should be Skyping and in areas of
remoteness it will work beautifully in areas of need…you could stay at home … and get
your kids off to school and not pay for parking and not do your back and shoulder in as
you get your child out of the car, and we will do a consultation and we will see you when
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things are changing. That’s about respecting parents and individuals to know their
condition and what they need.
– Policy Advisor
Play
It is an opportunity to explore and make mistakes, tinker while working on my child’s outcomes and
goals.
Let my child be “doing their physio” while hanging out at home with Dad or their brothers and
sisters. Explain to me how to do this and let me know it’s OK to do so. Give me ideas on how to
practice my child’s standing while we are watching the footy. I don’t want to
… feel like all your time is focussed on his therapeutic needs and there’s not a lot of
time for – cuddles, or play, or just enjoying him … therapeutically we’re working pretty
hard, and we find he’s got a beautiful personality but his actual developmental needs
are pretty exhausting maintaining all of that.
– Parent
Practice
Don’t think my child can learn something and then simply move on. Avoid withdrawing services once
something once something is ‘done’ or something new is introduced, let my child practice. My child
can practice allied health assistants or physiotherapy entry level students. Let’s use technology to
show you how we are going or clarify things as we progress. Especially, do not think that my child can
learn something and then say they don’t need any more help.
There was so much value in still having regular physiotherapy, to guide us in what we
were to continue to do at home to maintain the skills that she had acquired (e.g.
supported sitting balance) and to maintain her musculoskeletal health for comfort and
aesthetics.
- Carer
Keep changing what my child does and maybe retry something that didn’t seem helpful before.
Practice and contact with physiotherapists keeps me motivated, as does explaining to me how my
child is progressing.
Choice
Give me choice, not progress along the same path as everyone. Let’s discuss what, when, and how in
thinking of physiotherapy.
Choice can come from knowledge of what’s available and possible. Access to evidence and lay
summaries of research provide the basis for my choices discussed with health and disability
providers. For example, can my child benefit from treadmill training for walking? Can evidence from
treadmill training be reapplied to a ‘robotic’ walking device?
Website and databases provide evidence, for example the Evidence Based Medicine Toolkit
(http://www.ebm.med.ualberta.ca) or the physiotherapy focused PEDro (http://www.pedro.org.au).
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Currently these summaries of evidence are not prepared for me. Innovation allows the most
promising practice and yet a stubborn commitment to ‘evidence’ can stifle innovative thinking
(Crosbie, 2013). Evidence may develop as outcomes are seen and families share experiences. Help
me access ‘user friendly’ evidence, because “you don’t know what you don’t know”.
Does the sequence need to be a form signed off by paediatrician or other medical practitioner? Can’t
the person who knows me and my child best sign my referrals or my equipment requests? For
example the physiotherapist could provide




direct referral to medical specialists (for example, paediatricians)
greater access to referrals for diagnostic imaging
injecting rights for botulinum toxin-A for use with muscle spasticity
limited pharmacological prescribing rights (for example, health practitioner prescribing
pathways).
Let me make some of my own informal assessments. An online developmental checklist with details
of developmental milestones or functional outcomes, like reading, and things to consider reviewing,
for example vision, comprehension, attention with follow-on ideas of where to go next, for example
which health professionals advice to seek.
Some other things I would like are








Physiotherapy services customised to needs, goals, and abilities
In-home services
A combination of individual and small group sessions
A one-stop-shop for services, so we could access all necessary services for health, therapy,
and equipment in one place
Consistency in therapists, timely services, flexible and responsive to the needs my child:
sometime I want an intensive block of physiotherapy and other times intermittent reviews
Services provided on a regular schedule so plans can be made weeks and months in advance
Varied tasks for example, land and water-based physiotherapy services
All our health people working as a team together.
Authenticity
Does the community recognise my work? Is the learning significant outside the physiotherapy
session? I want to shape how others see me and my child as a fellow citizen in the community.
If you show my child has trouble walking by assessing them in front of their peers at school, you
demote my child in their peer’s eyes.
See me and my child as belonging to my local communities. Apply my child’s skills in a range of
situations, like riding their bike in the cross country event with their school friends. Let my child do
archery even if my child needs to sit down and don’t be afraid to let my child do the flying fox.
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So I can know how we are progressing, help me understand where we are heading and what are the
steps to get there, so I can know how we are progressing. It also helps me explain to other health
providers, school, and our family what is happening.
… if they’re very little changes, like, even your general paediatrician won’t pick up little
changes or, say, things like, “So is he rolling over yet”?, or, “Is he walking yet”?, and
as a parent, if you’re constantly saying, “No”. It’s really disheartening. But our physio
will say, “Oh look, he’s looking to the side, that’s because he’s telling you he wants
that toy, that’s good motivation, let’s try and get him to like reach with one arm” or,
“Look, he’s using one arm independent of the other arm and that’s great, that’s good –
these are the building blocks that will lead to him rolling over”. And so they assist us in
understanding him, and helping motivate him, so that he’s practicing this stuff.
– Parent
Challenged
Is my child appropriately challenged?
Re-evaluate goals and apply things in different contexts. My family’s life will be influenced by the
goals, small and large achievements, and motivators my child has. Change the way we approach and
do things and see what my child can achieve.
[We paid for] hands-on physio and that has actually got Cary* up on his feet and
walking. He was not weight bearing before that. And that has just literally changed our
lives. We were able to sell the wheelchair accessible van which was a huge financial
burden purchasing that. It also means we have no requirements for a lifter; that it
means that Cary* does only need one person to provide his personal care, but we
need to maintain some hands-on therapy so that he doesn’t lose those skills and also
to progress those skills so that hopefully he will become more independent.
– Parent
Application
Is it theoretical, does it apply in the real world?
How am I going to get this to work at playgroup so I can stand back like the other parents? Plan with
me how the group’s facilitator or a different carer can enable me to part of things just like other
families.
I find out useful stuff from other parents, so I’d like a way to connect with other parents either in
person or online. I’d like to be able to find family advocacy networks easily to help me negotiate the
systems and help me apply things in the real world, like travelling with a wheelchair (for example,
http://www.havewheelchairwilltravel.net). I may want to build relationships through technology
with online forums, blogs and Facebook pages: I am a digital leader like my community peers. I want
my child to be able to connect with another child or teenager anywhere in the world to talk about
their stuff too.
I have a lot of experiences and knowledge so let me feedback to DisabilityCare Australia on how the
service changes are affecting me, how it is working in the real world, and share advice (for example
on policies, on subsidies or funding options). I can do this either through my digital networks or rural
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and remote forums when you visit us. Use these feedback sessions to share information on topics for
all families such as play, child development, and preparedness for schooling.
Workforce, allied health assistants, technology, explaining and sharing
This section uses information provided by all participants, the literature, and policy reviews to
suggest ways for expanding, adapting, and growing the paediatric physiotherapy workforce.
By stretching the model of paediatric physiotherapy, by continuing one to one care but responding to
choice and need, by adding in others to deliver physiotherapy like allied health assistants, teacher
assistants, and paid carers physiotherapy can provide context for these practical ideas.
Technology has the potential to widen access to physiotherapy and also allow times for checking-in
and seeking advice from clinicians. Growth and expansion of the workforce can be achieved by
retention of existing paediatric physiotherapists, encouraging change to and re-entry into paediatric
physiotherapy, and increasing student placements can provide increased services and recruit future
providers, especially those with a disability. Specialist physiotherapists can provide consultations,
problem-solve, and advise families and the ‘usual’ physiotherapist. Parents and carers sharing
information can help to build relationships, negotiate goals for their child, and enable down-to-earth
practice and application.
Developing families’ empowerment
Physiotherapists working in partnership with parents and carers can facilitate their empowerment in
the short term (2013/2014).





Physiotherapy services focused on key outcomes not outputs with the application of the
practical ideas presented
Reports on essential agreements with outcomes not outputs and reports to schools for
implementation on how the child participates
Facilitate parents and carers attendance at professional development, for example families
attend courses on family-centred care, visiting international expert in selected area, or
exploring new equipment (for example, robotic therapy equipment or new clinical
techniques) and funding is available from DisabilityCare Australia for the attendance of a
family
Participation in digital leadership, with examples being videotaping sessions, Skyping
processes, uploading video data to online sites with appropriate permissions, shared use of
video recordings between health professionals instead of repeated assessments. Aim for
powerful demonstrations of ability. Work to create opportunities for like-minded people,
families, therapists and communities, or like-minded schools to work together on an area of
internationally interest, for example mainstream schooling integration
Consider families pooling funding for a range of activities, for example attracting
physiotherapists in rural areas as fly in and out, fund allied health students placements, or
multidisciplinary consultations
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


Provide lay summaries of evidence. Work with community groups like BeyondBlue and health
research groups like the National Health and Medical Research Council. Create an online
resource centre which summarises literature and current best practice grouped by type of
intervention, condition, or activity. For example, serial casting for tight calves in a variety of
contexts.
As part of usual care, set goals and expectations, provide fees and payment options, privacy
information, and how appeals and safeguards can be made available to families.
Formalising skills around family-centred care and counselling, for example from programs
offered by Family Partnership Training Australia. Families can seek advice during difficult
episodes with their children and changing goals or dealing with grief and loss as a
supplement to psychology and psychiatric services. Timeframe: mid-term, 2015/2016.
Model to expand existing services into paediatrics
Stretch the model of paediatric physiotherapy by continuing one-to-one care and responding to
choice and need by providing multi-disciplinary and virtual consultation opportunities with different
health care providers together with families. Telephone assessment and advice can improve the
process of care while maintaining clinical effectiveness (Salisbury, et al., 2013). This can be for triage
or as an adjunct to care, as well as online forums, email advice and blogs. Recognise that ongoing
care may be needed – not achieve and cease services – refine goals and keep children and families
moving ahead. Avoid DisabilityCare Australia systems that hinder usability with a burden of
paperwork. Streamline systems where possible. Examples cited include




Avoid medical practitioner sign off for forms and use those working with the child closely.
Timeframe: short-term, 2013/2014
Provide choice in services using different delivery options, including virtual consultations.
Timeframe: short-term, 2013/2014
Multi-disciplinary consultation conducted simultaneously both as clinical consult or meetings
with a family but without the child or teenager. Travel time may be required. Timeframe:
short-term, 2013/2014
Touching base appointments, short consults enabling quick questions. Email or blog quick
consultations without the child present. Timeframe: short-term, 2013/2014.
To provide choice physiotherapists could move into private practice either joining an existing practice
as a specialist paediatric arm, or establish their own business. Professional development
opportunities in business management, evidence based practices, and family centred practices would
support these changes. Online webinar resources suited physiotherapists in this research and are
likely of interest to families too, so access should be offered to families in some instances. An
example of business development and support includes the Australian Medical Association
conducting one day seminars on preparing for private practice. Topics covered include tax,
superannuation, business structure advice, medical records, privacy, legal human resource
requirements, and banking options (http://ama.com.au). Costing and management experience from
other physiotherapists who are participating in Better Start for Children with Disability or Enhanced
Primary Care packages can tailor the advice or seminars.
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
Physiotherapists transition to private practice, recommend to Australian Physiotherapy
Association to run programs with other health professions. Timeframe: short-term,
2013/2014
Retain existing paediatric physiotherapists with access to a mentor or specialist paediatric
physiotherapist to enable support and advice, particularly for those in rural and remote areas. The
use of experienced or specialised physiotherapists who are contactable can assist problem solving for
children too. Participants described physiotherapists wanting to pursue a career in paediatrics but
found it hard to find secure positions where they could have ongoing employment and have time to
develop their skills. Historically with smaller demand in areas such as paediatrics dedicated
postgraduate opportunities have not been offered. Development of best practice and evidencebased information for physiotherapists and families alike can be led by specialist physiotherapists
and facilitated through agencies such as Health Workforce Australia with their models of clinical
panels.


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Retention of paediatric physiotherapists with a mentor, and different strategies for rural and
remote practitioners are needed. Recommend to Australian Physiotherapy Association to
offer, lobby, and participate in rural funded initiatives and facilitate mentoring networks.
Timeframe: long-term, 2017 plus
Recommend to state health departments to increase the number of dedicated paediatric
physiotherapy positions in the public sector. Timeframe: long-term, 2017 plus
Further education and postgraduate offerings in paediatric physiotherapy have the potential
to be offered online and on demand to provide access regardless of numbers of participants.
Recommend to Australian Physiotherapy Association to liaise with Council of Physiotherapy
Deans of Australia and New Zealand. Timeframe: mid-term, 2015/2016
Recognition of specialist health practitioners (under the Health Practitioner Regulation
National Law) in paediatrics which is a recognised specialty. Currently specialists are not
recognised and it is recommended to Physiotherapy Board of Australia, for easier
identification of advanced skills in paediatrics that the issue of recognition under the national
law of physiotherapy specialists be reviewed. Timeframe: mid-term, 2015/2016
Model of physiotherapy assistant participation
Physiotherapy or allied health assistants, supervised by physiotherapists provide continuity of care
and time to practice and learn new skills, for example walking practice or after surgery. The essential
training of physiotherapy or allied health assistants is best supplemented by physiotherapy specific
training, and adhered to by supervisory requirements (Department of Health, 2012). Importantly,
enable those with a disability to be part of facilitated entry that exists to offering physiotherapy or
allied health assistant training, reinforce existing positive selection, and support at Universities, TAFE
and other Registered Training Organisations. Mentoring programs like Julia Farr’s youth mentoring
facilitate career ideas (http://www.purpleorange.org.au).

Recommend to Registered Training Organisations to heighten responsiveness to those with a
disability both for entrance and progress through allied health assistant programs.
Timeframe: short-term, 2013/2014
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Recruitment and retention strategies
Recruit, retain, and grow the paediatric workforce within a citizenship model of disability. Given the
link between comprehensive entry level exposure to paediatric physiotherapy and a willingness (and
opportunity) to pursue working in the area after graduation, opportunities for student placements in
paediatrics are needed. Funding for the clinical educator, facility, or equipment are all part of a lower
cost service delivery but with a consistent physiotherapy educator to enable relationships with
families and other healthcare providers to develop.
Facilitate those with a disability to be physiotherapists, developing positive role models, and mentors
for others with a disability. However the requirements of physiotherapy practice may be a
disincentive.





Review standards of entry level qualifying statements for physiotherapy for dedicated
paediatrics rather than lifespan alone. Timeframe: short-term, 2013/2014
Recommend to Universities, through the Council of Physiotherapy Deans of Australia and
New Zealand (CPDANZ) and the Australian Physiotherapy Council to review the accreditation
standards so that they are more responsiveness to those with a disability for entrance and
progression through physiotherapy programs. Timeframe: short-term, 2013/2014
Facilitate student placements in paediatric physiotherapy with support for costs, such as a
clinical tutor at university clinics or at centres, or payment structures to enable continuity of
a clinical tutor rather than a fee for service model. Coalitions of families could also agree to
take this approach. Timeframe: mid-term, 2015/2016
Recommend to Health Workforce Australia to invest in paediatric physiotherapy placement
and training opportunities in university programs. Timeframe: mid-term, 2015/2016
Recommend to the Physiotherapy Board of Australia to consider limited registration under
supervision for those with a disability to enable them to work in physiotherapy. As limited
registration physiotherapists adhering to the Code of Conduct for registered health
practitioners they have a responsibility to recognise and work within the limits of their
competence and scope of practice. Timeframe: long-term, 2017 plus.
Implementation plan for re-entry and refresher in paediatrics
Facilitate a change to working in paediatrics or re-entry into to paediatric physiotherapy through a
mentored program which guides the re-entering physiotherapist through applying for registration
using identified models that allow tailored re-entry based on an individual’s interests and
circumstances (Sheppard, Crowe, Jones, & Adams, 2010a). Previously all areas of physiotherapy
practice have been required and the initial application to the registering authorities was experienced
as a barrier (Sheppard, Crowe, Jones, & Adams, 2010b).

Recommend to the Physiotherapy Board of Australia to allow re-entry in one area of practice
and adhere to scope of practice requirements in the Code of Conduct. Participation in the
Recency of Practice Registration Standard when it is open to consultation in 2013.
Timeframe: short-term, 2013/2014
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
Recommend to the Australian Physiotherapy Association and Council of Physiotherapy Deans
of Australia and New Zealand (CPDANZ) to offer paediatric physiotherapy programs to enter
practice, including access to selected areas of entry level education. Timeframe: long-term,
2017 plus.
Extended scope of practice
Participants suggested areas of extended or advanced scope of physiotherapy in paediatrics either as
a stream of practice in early childhood or access to prescribing or referral. Specialised or advance
physiotherapy practice could be an early childhood clinician pathway, with skills in child psychology,
play, feeding, or development. Extended scope could also include
1.
2.
3.
4.
Direct referral to medical specialists (for example, paediatricians)
Greater access to referrals for diagnostic imaging
Injecting rights for botulinum toxin-A for use with muscle spasticity
Limited pharmacological prescribing rights.

Participation in Health Workforce Australia projects on the Health Prescribing Pathways
using the developed framework. Timeframe: short-term, 2013/2014
Review and engagement with Health Workforce Australia’s projects on extended scope, for
example physiotherapists and nurses in the emergency department. Timeframe: short-term,
2013/2014

Information from DisabilityCare Australia
The lack of information on the practicalities of the implementation of DisabilityCare Australia and
considerable reference to existing systems, such as Better Start for Children with Disability, raised
considerable expectations and concerns from parents, carers, policy advisors and physiotherapists on
what DisabilityCare Australia should provide. The expectations range from DisabilityCare Australia
funding physiotherapy positions, professional development for physiotherapists through to
resourcing physiotherapy student clinics, and multidisciplinary teams. Many other expectations
centred on information, leading to ideas about the DisabilityCare Australia website.
Participants recommended that the DisabilityCare Australia website be developed as a conduit to
services with different language options and a comprehensive list of service options, policies, and
system updates available. Ideas include
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

Health professionals in categories or by skill, where people can filter to find an appropriate
service (for example, select ‘Physiotherapists’ and then sub-select ‘children’s
physiotherapists’ then ‘walking’)
Service providers clustered by the experience, services, and connections that they provide.
Long alphabetically-ordered lists of businesses and service providers may disadvantage some
lower down the list as seen in the Better Start for Children with Disability scheme
An information network for those without sufficient internet access or when their question is
not answered. For example, telephone hotline, a manual or booklet guide of information, or
an online ‘live chat’ option
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



Host online developmental checklists to help families consider what services or professionals
may be relevant to their needs
Practical disability advice regularly updated. For example, information on disability access
(ramps, accessible public washrooms, and disabled parking options) in a particular postcode,
to help families make choices about appropriate local service providers
Links to professional associations and organisations for families to investigate what a
particular profession can provide and if it is relevant to their child’s needs. Alternatively,
professional organisations could be requested to provide a generic summary of the roles and
responsibilities within the scope of each profession
If parents and children are ineligible for DisabilityCare Australia provide alternative funding
options and arrangements and website links on where to access these, including funding
packages or best contact resources.
Conclusion
Parents and carers of children with disabilities want access to physiotherapy services made simpler
and, as an extension, they want access to all disability services made simpler. These services are such
a big part of parents and carers lives, much greater than for people without disabilities, that it may
seem that parents and carers are asking for a lot. In reality, when multiple services are needed
several times a week, making things simpler is a big deal.
We need to think how do we help with service access, not how do we ration services. We need to
think, what if I was in the same situation? Would you like to have to eke out visits to a health
professional? Would you like to decide whether to go to a clinician, not based on your need to go,
but based on the number of times you went this year or that you just might need to go later in the
year?
And as a physiotherapist, how would it feel to know that a child needs help but has run out of
access?
Children with disabilities do not need our sympathy or our pity. Children with disabilities, their
families, parents, and carers need to be seen as and treated as equal citizens with equal rights.
Starting with the right to receive all the support they need to live as normal a life as possible.
Section 4 – References & Appendices
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Appendices
Appendix A: Interview questions for policy advisors and physiotherapists
Please note that the following list of questions is acting as a guide for the research team and
participants. Questions may vary between interviews and contexts. You are welcome (and
encouraged) to raise any additional thoughts or practical ideas around these topics at any point
during the interview process.
1. Working in paediatrics as a physiotherapist.
 Summary of the type of organisation that you work for (e.g. private/ public, health/ disability
etc.), your role and client mix
 What do you think families value most about your involvement and role as a physiotherapist?
Example, qualifications, knowledge, interactions, benefits of therapy
 Briefly, what are some positives /negatives of working as a physiotherapist, and for children
and families, in the current system?
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 How do you currently communicate within and between services/ health providers?
 Extended scope of practice – is there anything you are not currently able to do within your role
as a paediatric physiotherapist that would influence how children’s services are provided, and
would this be appealing career advancement in paediatrics?
2. Have you heard about the National Disability Insurance Scheme?
 What is your understanding of the NDIS?
 The NDIS is being designed to give all eligible individuals with permanent disability, including
children and their families, greater options about accessing health and disability supports, care
supports, equipment and resources. What do you think your role will be within the NDIS?
3. How should the NDIS make the process of getting the services/ resources families require easier,
thus reducing the emotional burden on families?
 The NDIS proposal uses words such as ‘flexible’ and ‘do it once’. What do you think the NDIS
system needs to be sensitive to when managing and working with families?
4. The NDIS is focussed on enabling people with disabilities (and their carers/ families) to access the
services that they want to access. How can the NDIS (as a system) assist parents to effectively
advocate for the appropriate services/ interventions for their children?
 What do you think your role could be in empowering and educating parents to make informed
choices?
 What are your thoughts on how your skills as a physiotherapist would be beneficial to this
process?
 One mandate of the NDIS is to allow patients and families complete choice on access to
services. What are your thoughts on this – positives versus negatives?
5. Evidence shows that early intervention is highly beneficial in achieving good outcomes for
children with disabilities – how can the NDIS best support this?
 Do you have any ideas on how provision of early intervention could be improved, considering
that the NDIS will be implemented soon?
 Are there any special considerations the government should be aware of for assisting access to
children that fall outside the ‘early intervention’ stage (e.g. greater than 8 years of age?)
6. What provisions need to be made to manage and adapt to new government funding packages
(e.g. Better Start)?
 If you work in the private or non-government sector, how do you think the NDIS will affect
your physiotherapy business model?
7. If the government were to explore the use of technology (e.g. social media, apps, web based
video) as part of the NDIS design, what sort of things would you or your clients’ families find
useful, and how would it enhance the care provided?
8. Do you think with the introduction of the NDIS there will be a shifted role for student
physiotherapists and allied health assistants in contributing to paediatric physiotherapy services?
 If so, how?
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Appendix B: Interview questions and questionnaire for parents and
carers
The NDIS is about what the parent and child need to lead a normal life. Therefore, the questions
should concentrate on what the parent/child needs and not on the services that can be provided.
1. Tell me about your child’s disability (or needs)?
 Tell me about a typical week?
 And, what about a busy or a bad week?
This is looking for the story of the parent and their child. Background, disability, struggles,
good things. The impact of other children on the parents.
2. What do you and your child need to fully participate in your community and your life?
Concentrating on the things the parent a child need. Not just health services, though that is
central to the research. More, how to achieve equity, whether it is therapy, equipment,
respite or other things.
3. Where do you find information on the services that may help you or your child?
 What services have you accessed to help you or your child with their disability?
 What services have you been unable to access that may help you or your child?
 Describe an incident where service provision for you and your child was very good.
 Describe an incident where service provision for you and your child was very bad.
Critical incidents. What does the parent know and not know about service availability.
4. One of the main aspects of DisabilityCare Australia is that you would have complete choice and
control over what sort of services and supports you access.
 What do you think is good about this?
 Is there anything about this you are worried about?
5. If you were to establish services for you and your child, how would they be organised?
 What are the three most important ways services could be organised for you?
Hypothetical, to illicit deeper information on what the parent needs.
6. Has your child received physiotherapy for their disability?
 If yes: how was physiotherapy provided?
 If no: why was physiotherapy not provided?
7. If you were to establish physiotherapy service for your child, how would it be organised?
Physiotherapy specific. And hypothetical, to illicit deeper information on what the parent
needs.
8. How did you find the transitional stages going from home to childcare (if used. If not- why not), or
to primary school or high school?
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Appendix C: Table of practical ideas and recommendations
Aim 1: Empower parents and carers of children with disabilities with what to expect from physiotherapy and
services to meet their needs, to enable exercise of choice and control
Proposed outcome Participants’ practical ideas
Description of participants’ ideas
Identify how families
and carers can best
participate in the
development of care
planning.
Lay summaries of evidencebased interventions and
practices
Lay summaries could be a useful component of care planning. It
supports families being knowledgeable and making informed choices
about their child’s care, and has the potential to help them shape their
clinical and physiotherapeutic priorities.
Virtual consultation
opportunities
Virtual consultations may connect children and their families to the
most appropriate and experienced disability and health professionals.
Metropolitan-based specialists could offer more consistent
consultancy to rural and remote locations. Families who find it
challenging to attend numerous appointments can still connect with
professional staff in a scheduled and coordinated way. Virtual
consultations must have proper technology infrastructure support,
including reliable internet and videoconferencing facilities.
Rural and remote forums
Rural and remote forums between children, families and DisabilityCare
Australia will encourage families to be heard about what is an is not
working in the scheme as the roll-out occurs. It also offers an
opportunity for service changes, disability news and research to be
shared among the community in a coordinated way.
One-stop advocacy network
Families must be able to access an ‘advocate’ as goals and
circumstances change over the life course. An advocacy network could
be compiled and distributed to people accessing DisabilityCare
Australia listing appropriate organisations or individuals to act as a
client advocate.
Streamline administrative and Recommendations were to have a simple, clear website with a list of
reporting tasks
necessary forms that is easily navigable, and for DisabilityCare
Australia to minimise the burden of onerous reporting and
administrative mechanisms. If children are ineligible for DisabilityCare
Australia, alternative funding options and arrangements should be
explicitly discussed and links provided on where to access these
(including funding packages and best-contact resources).
Key elements for
DisabilityCare Australia
A website needs to be easily navigable, available in different language
how information will website could act as a conduit options and with a comprehensive list of service options, policies and
be provided for
to services
scheme updates available. Ideas include
families and carers
 List health professionals in categories or areas of experience, where
to effectively
people can filter options to find an appropriate service
exercise choice and
 Having lists of service providers based on the experience, services
control in service
and connections that they provide, rather than in alphabeticallyprovider selection
ordered lists
using physiotherapy
 A virtual noticeboard for services to easily update changes (for
as an example
example, services now providing weekend consultations). This
should not be a marketing opportunity, but rather an information
sharing process
 Host online developmental checklists, not intended as a source of
health information, but to help families consider what services or
professional groups may be relevant to their needs
 Links to professional associations and professional bodies for
families to investigate what a particular profession provides, and if
it is relevant to their child’s needs.
Mobile and iPad apps for
uploading clinical video data
Additional video footage (for example, of a child walking in various
situations) can be a useful tool for therapists to make informed clinical
decisions, or to check a child’s progress outside of the clinic
environment. Scope exists to collect this information in a coordinated
manner, transferred within the nominated ‘team members’ of the
child with appropriate permissions.
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Electronic records and
documentation processes
This continues to be seen by many clinicians as a valuable future
investment, to reduce administrative time and more clearly and
effectively share reports and plans. Families could also have their
child’s health data scanned into a personal health record. This could be
as simple as consolidating health reports onto a USB drive to take
between appointments, distribute between health professionals and
allowing future reports to be uploaded. This could be facilitated by the
Local Area Coordinator.
Flowchart for accessing
DisabilityCare Australia
This distribution of a flowchart on accessing DisabilityCare Australia
could be useful for families. For example, outlining the number of
steps needed to go through to register/ find professionals/ contact an
advocate. These could be provided via promotional material or even in
a pocket card for health professionals and families.
Aim 2: Expand, adapt and grow the paediatric physiotherapy workforce
Proposed outcome Participants’ practical ideas
Description of participants’ ideas
Establish
recruitment and
retention strategies
for paediatric
physiotherapy
Business up-skilling packages
to build the number of
physiotherapists offering
private-sector services
It is important to expand the capacity of the current workforce as well
as increasing the number of paediatric physiotherapists. Appropriately
skilled professionals may lack business experience and acumen to offer
additional hours in the private sector. Business up-skilling packages/
course targeting these professionals could support physiotherapists to
work in a private business model if no other work opportunities in
paediatrics are available. It may also encourage existing small
businesses to recruit appropriately experienced clinicians to their
workplace.
Increase the number and
capacity of dedicated
paediatric physiotherapy
positions within the public
sector
Participants recommend ongoing investment and commitment to
increasing the number of paediatric-specific positions that can service
the acute and community disability sectors. These positions need to be
appropriately remunerated, established with sufficient professional
supervision structures in place, and appropriately incentivized through
leave arrangements, funded professional development opportunities
and career pathways.
Supported professional
development opportunities
Participants propose supported professional development
opportunities could be an important retention strategy for the
profession and disability sector. This could include online webinar
resources with flexible access. State-wide and national professional
development programs for paediatric physiotherapy could also ensure
consistency of and equitable access to content delivered and support
rural and remote practitioners.
Investment in paediatric
physiotherapy placement and
training opportunities in
university programs
Building opportunities for clinical education in paediatrics is seen by
participants as timely and important in building a sustainable and
sizeable number of clinicians in the field. This is with the dual purpose
of establishing interest and opportunity in paediatrics for students, and
creating a low-cost service choice for families (as student-driven
services are historically offered at a lower cost). This would require
DisabilityCare Australia to create a fee structure process that includes
student groups.
Facilitate mentoring and
supervision networks for
paediatric physiotherapists
Formalising mentoring and supervision networks are described as
critical for the retention of physiotherapists in paediatrics and to
ensure quality service delivery. Less experienced clinicians could be
mentored in family-centred care practices as well as clinical skills.
Experienced physiotherapists could have the opportunity to have their
seniority acknowledged and used. Time required for mentoring and
supervision must be recognised as a vital part of workload so that
clinical service time is not eroded or compromised.
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Develop ideas to
expand existing
services into
paediatrics
(including rural
areas)
Increase resourcing to
existing interdisciplinary
paediatric team structures
Interdisciplinary team structures ensure comprehensive, specific skill
bases to address even the most complex disability issues; provide
consistency of therapists over the long term; centralise administrative
processes; and provide a secure and ongoing employment structure.
Investing in public sector interdisciplinary team structures within the
community disability model is essential for coordinated care.
Rural paediatric
physiotherapy mentoring
networks
Professional isolation and burdensome waiting lists can compromise
job efficiency and effectiveness. There are also challenges with getting
‘skilled up’ in complex paediatric disability management. Funded
professional development opportunities and tele-health facilities
should be a priority for clinicians providing services to rural areas. Lists
of skilled physiotherapists willing to be consulted for clinical queries
could also be distributed.
Panel of expert paediatric
advisors
Opportunity exists for DisabilityCare Australia to link with a panel of
expert paediatric physiotherapy advisors, or through the professional
associations. This may help with better system-level dissemination of
information, policies and processes between the profession and the
national disability scheme.
Develop a paediatric-specific Consideration can be given to allowing allied health assistants who are
stream of Allied Health
specially trained in paediatric disability care to be accessed as a
Assistant training
reasonable and necessary labour support for families (under
supervision of registered physiotherapists) for areas like gait retraining, exercise programming, group based therapy services or
additional therapy hours for rehabilitation following elective surgery.
This must be considered in conjunction with appropriate resourcing to
allow registered physiotherapists to have sufficient time to supervise
the therapy assistant workforce.
Development of school-aged A large gap was described in physiotherapy with school-aged services
and/ or transitional teams
and at key transition times. Families should be able to negotiate to
have their preferred therapist help them to transition to school,
kindergarten, child care etc. in a coordinated way. Alternatively,
specific allied health teams including physiotherapists targeting these
ages and stages could offer practical support and ideas, equipment,
therapy interventions, educational supports and assistance with social
inclusion opportunities across the education continuum.
Explore
implementation
plans for re-entry
and refresher
courses in paediatric
physiotherapy
Retrain only in paediatric
physiotherapy rely on code of
conduct to only work in scope
of practice
Examine possible
Formalised counselling and
profiles of extended family-centred training
or advanced scope pathways
of physiotherapy
practice in
paediatrics
Encourage physiotherapists to re-enter or change practice to the
paediatric workforce.
Use negotiated refresher course with mentor to facilitate pursuit of
areas of interest and workforce shortage.
Opportunity exists for disability workplaces that employ
physiotherapists to formalise their skills around family-centred care.
There are several programs that already exist (e.g. Family Partnerships
Training Australia) which would be a valuable experience for the
paediatric disability workforce. Some participants also expressed an
interest in formalising their knowledge around counselling parents
during difficult episodes with their children and changes in goals. This
is not at the expense or replacement of highly skilled professional
groups (e.g. psychologists) who have specific training in this field.
However, for interested physiotherapists, this skill set may not only
support a coordinated care approach, but may also be particularly
useful in less resourced and staffed areas of rural South Australia and
better support therapists working in stressful environments to reduce
attrition
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Early Childhood Clinician
pathway
A suggested area of advanced physiotherapy practice was developing a
career as an ‘early childhood clinician’. Scope exists for
physiotherapists to formalise knowledge on broader issues of child
psychology, play therapy, feeding and development into an alternative
early childhood clinical position. Creatively retaining specialised
physiotherapists to the disability sector will be critical in ensuring
adequate workforce, and career advancement opportunities are
necessary for this.
Specific clinical skill
advancement
The physiotherapy profession will continue to engage with Health
Workforce Australia and the Physiotherapy Board of Australia
regarding clinically useful advancements in skills.
Explore the
Developmental checklists
development of
training packages for
physiotherapists to
support families’
empowerment
DisabilityCare Australia
support systems
Models of Allied
Student-driven children’s
Health Assistant and physiotherapy or
student
multidisciplinary clinics
physiotherapy
participation in
paediatric services
Models of allied health
assistant use
An online developmental checklist could support parents and carers to
be proactive in addressing their children’s needs. Details of
developmental sequences or functional domains (e.g. reading) could
be linked to guides on evidence-based approaches, latest methods of
assessment and relevant professional groups that can be investigated
if specific concerns exist.
Online forums and Facebook pages can be tools to encourage peer
support, however face-to-face support is also appropriate. A
DisabilityCare Australia ‘support contact’, in addition to the local Area
Coordinator, would come alongside a family beginning their journey
with DisabilityCare Australia to offer support and words of wisdom
from a road already travelled. Families could ‘opt in’ to either offer
their support or receive support as they saw appropriate. Ensuring that
families do not feel alone when navigating the health and disability
sector will encourage and empower them to make informed choices.
Targeting children with physical or developmental concerns, student
physiotherapy clinics could potentially provide assessment, reports
and therapy sessions over large portions of the calendar year under
the tutelage of experienced physiotherapy clinical educators. The
specifics of such clinics would need detailed consultation with
individual universities and their program directors. However funding
and resourcing tertiary institutions to provide a clinical education and
service model such as this could also expose physiotherapy students to
the field of paediatrics in a clinically useful way.
Registered Training Organisations to heighten responsiveness to those
with a disability both for entrance and progress through allied health
assistant programs.
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