Prior to 2012, approximately 410,000 Australian people had been supported through “traditional block-funded service approaches” (Dowse, Wiese, Dew, Smith, Collings, & Didi, 2016, p. 81), where large organisations or institutions received a block funding to manage a large number of people with a range of different needs. In this previous welfare system, some stakeholders argued that understanding and supporting each individual’s unique needs was difficult, and a major reform of disability funding mechanisms was considered necessary by what was then Rudd’s Labour Party (Buckmaster, 2012). After an extensive investigation, the Productivity Commission (2011) concluded that the previous disability support system was “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports” (p. 2). The Commission further emphasised the fundamental changes that the new National Funding system should provide to the people such as:
· entitlements to individually tailored supports based on the same assessment process,
· certainty of funding based on need,
· genuine choice over how needs are met (including choice of provider), and
· local area coordinators and disability support organisations to provide grass roots support and a long-term approach to care with a strong incentive to fund cost effective early interventions (Productivity Commission, 2011, p. 2).
Consequently, the government announced a funding plan called the National Disability Insurance Scheme (NDIS). Commonwealth, state and territory governments, who used to manage the disability funding system, were re-established as a single agency called the National Disability Insurance Agency (NDIA) in 2012 (Buckmaster, 2012). In July 2013, the NDIA launched trials across a number of regional sites nationwide including the Barwon region in Victoria and the Australian Capital Territory, and since July 2016, the service has been instigated across Australia.
The NDIS places a strong emphasis on increased choice for people with disabilities, tailoring support packages to the individual needs identified by participants and allowing participants to prioritise the services they wish to access and to select their own providers. However, in the first two years of NDIS trials at various sites, some participants reported their choices to access certain services, such as music therapy, had been denied by authorities in the NDIA (McFerran, 2016; McFerran, Tamplin, Thompson, Lee, Murphy, & Teggelove, 2016). For example, several service users’ requests to include music therapy in their NDIS plans were rejected in the trial region of New South Wales, and participants were advised to seek a speech therapist who is musical or told that music therapy is just like instrumental lessons (McFerran, 2016). Paradoxically, some music teachers who specialise in providing services for people with disabilities have been told that only music therapy services can be funded. To understand this phenomenon a group of researchers from the National Music Therapy Research Unit (NaMTRU) at the University of Melbourne conducted a qualitative study by collecting various reports of those involved, such as the NDIA, and the Australian Music Therapy Association (AMTA), as well as selected participants of the scheme or families of the participants. The study aimed to: (a) better understand the needs and capacity for contribution of each stakeholder involved, and (b) generate knowledge for each stakeholder regarding requirements and objectives of both the scheme and music therapy access options.
The practice of music therapy in the field of disability has a long and contested history that has been documented since the 1940s (Aigen, 2014). Literature exploring the therapeutic application of music for people with disability has typically been focused on person-centred goals that are identified by professionals to address perceived needs of the service recipients. Recent research in this area clearly supports the effectiveness of music therapy in school and institutional contexts and documents outcomes in social (Darrow, 2014; Pienaar, 2012), physical (Dieringer, Porretta, & Gumm, 2013; Klaphajone et al., 2013; Wang et al., 2013), communicative (Dunning, Martens, & Jungers, 2015; Krikeli, Michailidis, & Klavdianou, 2010; Pienaar, 2012; Stevenson, 2003), psychological (Krikeli et al., 2010) and wellbeing or quality of life domains (Curtis & Mercado, 2004; Shiloh & Lagasse, 2014). Whilst music therapy services have been used for decades to support and facilitate expert-determined goal attainment for people with disabilities, there is currently limited understanding of the ways in which music therapy can address the self-identified needs of people with disability in the community. This distinction is key to the ideology underpinning the NDIS which is built on the social, rather than medical model of disability.
Within a medical model of disability, having a disability is considered to be an individual’s problem that requires medical attention by an expert. Within a social model of disability, having a physical, intellectual, or mental disability is understood as being part of the diversity of human experiences and a responsibility of the society to allow for the active participation of all citizens (Carson, 2009). The social model that originated from Scandinavian countries in the late 1970’s initiated a deinstitutionalisation movement across the world, and people with disabilities whose lives had been managed in large institutions and organisations were moved back into the community, often in sheltered housing. Values such as community participation and social inclusion were critical in this movement. This paradigm shift visibly influenced the field of music therapy in the 21st century (Ansdell, 2002), with the emergence of contemporary music therapy models such as community music therapy (Stige & Aarø, 2011) and resource oriented music therapy (Rolvsjord, 2010) also emanating from Scandinavia. Other equity oriented approaches such as feminist music therapy (Hadley, 2006) and anti-oppressive music therapy (Baines, 2013) have shaped contemporary music therapy practices and research worldwide (Aigen, 2014; Kenny & Stige, 2002).
Community music therapy research and theory has been most clearly aligned with the disability rights movement worldwide (Stige & Aarø, 2011; Stige, Ansdell, Elefant, & Pavlicevic, 2010), endorsing a focus on empowerment and community participation that is aligned with the rhetoric of the NDIS on choice and control. Congruently, action research projects in this field have shown how people with the most profound disabilities can make choices within and about music therapy (Warner, 2005), participate in community music therapy groups, such as choirs (Elefant, 2010), as well as music festivals (Stige, 2010).
More critical approaches have also been emerging around the globe, with a focus on ableism, neurodiversity and broad questioning of assumptions about what people with disabilities want from music therapists as captured in the journal VOICES special edition on music therapy and disability studies (Hadley, 2014). Local scholars in the Asia Pacific region have been prominent in this discourse, including Daphne Rickson (2014), Hiroko Miyake (2014) and Melissa Murphy (2018), whose recent PhD presented a critical analysis of young people’s access to music as they transitioned from child to adult disability services. While promoting these consumer-driven forms of practice, the NDIA appears to apply principles from the medical model when funding therapeutic services, which demands a focus on measurable, evidence-based practices rather than participants’ rights and choice to access music in many forms (Cameron, 2017; McFerran, 2016). This inconsistency has caused confusion for people with disabilities, their families, and service providers, as well as those involved in the planning process, including the NDIA staff (McFerran, 2016).
Music therapy practices in Australia have also been changing slowly to embrace the social model of disability. Although Registered Music Therapists (RMTs) often embrace humanistic approaches in the field, medical model practices such as neurologic music therapy (NMT) have also become popular in a range of fields including the disability sector. This treatment model emphasis may serve as a point of distinction between the work of RMTs and community musicians in the same sector and is surprisingly well matched to the demands of the NDIS, who often seek evidence whilst also promoting choice.
To better understand the relationship between different service providers, McFerran (2008) conducted a mixed methods research project to compare the practices of RMTs and community musicians in one adult disability service. Some distinctions between the programs were apparent, with the community music program being described as “being about energy and expression” and seemed more targeted towards those with mild and moderate disabilities, while the music therapist was seen as facilitating “meaningful interactions and self-expression at a personalised level” (p.22) better suited to people with severe and profound intellectual disability. Despite differences between the programs that were readily identified to the researchers, many of the carers felt that both programs offered participants an opportunity to transcend their disability and connect with others joyously, socially and musically. This matches closely with Stige’s (2009) description of practice in the disability field when visiting Australia, when he said “music as a social phenomenon is both a very common thing and a very special thing.” The role of music therapy can therefore be understood as the provision of professional and qualified services that address agreed psycho-social-emotional goals, whilst it is important to note that this occurs within a landscape of other music services that serve musical outcomes.
One recommendation arising from the comparative study (McFerran, 2008) was to consider more bridging options into community. However, a decade later, Murphy and McFerran's (2016) critical analysis of 27 articles describing music programs in the disability sector showed that the majority of programs were still conducted in closed groups for people with disabilities. Once again, the emphasis was on social encounters and music therapists focused on building connections between group members within expert driven models. For example, Lee’s research (Lee & McFerran, 2012) revealed a similar emphasis on expert models, with findings of improvements in communication being fostered through the provision of consistent song-choice opportunities for individuals with Profound Intellectual and Multiple Disabilities (PIMD). However, Lee’s (2014) subsequent research, involving interviews with five RMTs who worked with individuals with PIMD on a long-term basis, moved towards the social model by acknowledging that the improvements were not just in the skills of the RMTs, but also in the increasing depth of the relationship between therapist and client, which also allowed the therapist to better understand the client’s communication.
This emphasis on building relationships within long-term therapy was also reported by Cameron (2017), who described an array of benefits for four adults she had worked with over many years in areas such as: communication and self-expression, choice and control, social contact and ameliorating deterioration, and development of skills. She explained how these benefits were achieved through careful and sophisticated therapeutic facilitation at critical moments, and explored the importance of qualified professionals providing music therapy services under the NDIS scheme.
In summary, it is evident that service provision in the disability field is changing ideologically, although this change is inconsistent and diversely understood, both around the globe and locally. A bio-psycho-social model is adopted by the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF) (2001) to encompass elements of biological, social and individual perspectives of health and to integrate both the medical and social models of disability. This model may be relevant for RMTs who flexibly adjust their practices to suit the perceived resources and needs of participants in distinct contexts. Whilst funding and services continue to change under the NDIS, we determined that it would be useful to attempt to better understand music therapy access from multiple perspectives by interviewing stakeholders whose involvements with the NDIS were different during the first two years in the trial sites. Ethical approval was granted by the University of Melbourne (Ethics ID: 1545407.1) and data for this study was collected in October and November, 2015.
A qualitative approach was employed to address the research aim which sought perspectives of parties involved with the roll out of the NDIS. Rather than undertaking a large-scale survey to collect relevant data, in-depth interviews with a smaller number of key stakeholders were used to produce rich descriptions of their lived experiences, leading to subjective insights into how each person constructed that particular view from their position. Specifically, Interpretative Phenomenological Analysis (IPA) (Smith & Eatough, 2007; Smith, Flowers, & Larkin, 2009) was utilised since it was developed to interpret how participants make sense of experiences in their personal and social world (Smith & Eatough, 2007). IPA also allows the researcher to take an active role in contributing to meaning making using the techniques such as epoche, which is different to descriptive phenomenology with strict limitations on the researcher’s personal involvement with the data (Giorgi, 2009). By using IPA, the researchers aimed to understand the phenomenon from the multiple perspectives by incorporating and making connections between the descriptions.
This study was conducted in partnership with the research office of the NDIA and the AMTA, and funded by the University of Melbourne. Purposive sampling (Creswell & Plano Clark, 2011) was used to recruit people who had experiences with the NDIS through the study’s partnering organisations. The AMTA Board invited RMTs already working in NDIS trial sites through their membership base. The NDIA’s research office manager invited some NDIS planners and other staff to participate in the study. Once RMTs and NDIA workers were invited, we used a snowball recruitment method in which the RMTs and the NDIA workers identified others, including persons with a disability and/or their families who have used the scheme to fund music therapy services. All the participants were required to be competent to provide informed written consent, and we sought a balance of NDIA staff, RMTs, and persons with a disability and/or family in the scheme, although this was not achieved.
A total of nine people, consisting of three NDIA staff, five RMTs, and one mother of an eight-year-old boy with a functional disability, agreed to participate in the study. Most of the participants had been involved with the NDIS since the beginning of the trials in July 2013 and represented trial sites in three states: New South Wales (NSW), Victoria (VIC), and Australia Capital Territory (ACT). Information about each participant is presented in Table 1, including the names of the participants (pseudonyms) and the number of clients who accessed music therapy under the NDIS scheme, since these were further analysed.
The same researcher conducted all nine interviews. Due to issues with distance to these regional trial sites, the three NDIA staff and parent participated in phone interviews, and all five RMTs were interviewed via Skype. All participants were offered the option of either medium. The participants all agreed to their interviews being audio-recorded, and each interview lasted no more than an hour. Open-ended questions were asked as follow:
1) In your own words, please explain the NDIS.
a. Who does it support?
b. What are its primary objectives?
2) In your experience, how does the development of support plans for participants of the scheme (people with disability) take place?
3) How is eligibility for service provision determined?
4) What kinds of music-based services do you know about that are available through the scheme?
5) What is your understanding of the purpose and use of music-based services for people with disability?
6) What has been your experience of working with the NDIS?
Having gathered the data from nine participants, four stages of analysis were undertaken, following key principles of IPA suggested by Lakin and Thompson (2012).
Stage 1: Immersing in the data and extracting key statements from the interview transcripts.
The interviews were transcribed into text line by line. After becoming familiar with each participant’s perspective, key statements relevant to the research questions were identified and extracted in an Excel-spread sheet for further analysis. Each statement was coded with labels such as ‘Alice_3,’ which means it was Alicia’s 3rd statement.
Stage 2: Conducting an idiographic level of analysis, concerning the person-in-context.
Attending to each participant’s data, a researcher then performed double hermeneutics which enabled her to attend to each statement and try to make sense of what the person was making sense of his/her own experience (Smith, 2007). More specifically, with each statement, the researcher first asked “What matters to the interviewee?” from the person’s perspective, and then interpreted this perspective from the researcher’ point of view by trying to interpret “What that means to the interviewee?” The researcher interpreted the participant’s inner thoughts and feelings based on the description of the experiences (Larkin & Thompson, 2012). An example of this idiographic process is presented in the Appendix 1, with all the other analyses recorded in an Excel form.
Stage 3: Developing Emergent Themes by gathering similar perspectives across the nine participants.
As the current study interviewed people representing three groups in relation to the topic, it was apparent that similar perspectives were observed within the same group of people. For example, in the following two statements, the two NDIA staff explained how all their decisions to fund music therapy should have been justified:
· I've only funded it (music therapy) 2 or 3 times and all sort of different reasons. So, I've funded it for one 15-year-old with a lot of behavioural problems. He had autism, was non-verbal and found it very difficult to self-regulate. Mum was a single parent finding it very challenging. And there'd been some music therapy at school that had been, well they anecdotally said that it had been successful. So, we put that in the plan to look at that sort of self-regulation: breathing and calming. (Alicia_3)
· Goals always need to be linked back to the disability and justified from that perspective. (Bryce_6)
Based on these two statements, an Emergent Theme was developed, “it’s important for me to justify my decision to fund music therapy,” and a code N1 was given to this theme as well. N refers to NDIA staff, indicating that this theme was dominantly reported by the NDIA staff. In this way, R represented RMTs and P represented Parents. By looking across the similar interpretations of nine participants’ perspectives in this way, a total of 14 Emergent Themes were identified. Table 2 shows how each Emergent Theme was developed, typically based on at least two interviewee’s statements. Two themes (e.g. N5 and P1, see Table 2) comprised only one person’s opinion but were included because those nuanced statements were critical in forming the Final Themes. Moreover, in phenomenological analysis, not only the agreed perspectives across the participants are valued, but also critical individual perspectives are valued (McFerran & Grocke, 2007). Hence, including these two themes was appropriate.
The 14 Emergent Themes
Stage 4: Searching for connections across Emergent Themes by abstracting and integrating themes and revealing Final Themes.
By further examining the various perspectives captured in the Emergent Themes, three Final Themes were developed. For example, of the 14 Emergent Themes, the following four themes appeared closely related:
· N1: It’s important for me to justify my decision to fund music therapy
· N2: I have personal belief about the certain benefits of music therapy
· N5: I should be careful in supporting music therapy because not everyone is convinced about the effectiveness of music therapy
· R7: It is not about only the choice of services but also how to make a good argument for that choice. NDIA planners should understand music therapy more but RMTs also need to use the right language for effective communication.
While the first three themes reflect the NDIA staff’s inner thoughts while making decisions about whether to fund music therapy services, the last theme is based on two RMTs’ experiences and these further explained that the choice to access music therapy did need to be argued on the basis of a solid justification and using accepted language. Accordingly, this Final Theme was named “The decision-making process of the NDIA planners revealed.” Two more Final Themes were developed in this way and are presented in the result section. To ensure the credibility of the analysis, each stage of analysis was recorded transparently and traceable by other researchers in the university team, and each outcome was reviewed by co-researchers.
Final Theme 1: The decision-making process of the NDIA planners revealed (Emergent Themes N1, N2, N5, & R7).
Initially, most RMTs and the parent expected that music therapy would be easily funded upon request during the planning process, as it was included on the NDIS providers’ list. However, in the interviews, all the NDIA staff explained how complicated it could be for them to make a decision on whether to fund music therapy or not, and if they decided to fund, justifying their decisions to fund music therapy became crucial (N1). The planners we interviewed held a range of beliefs about the potential benefits of music therapy and they were more able to agree to funding if the request aligned with those beliefs (N2). For example, one planner strongly believed that music therapy would be beneficial for a child who had difficulties with speech, indicating that she would fund music therapy only for the speech goals. This revealed that most of the NDIA staff we interviewed had limited knowledge of the breadth and scope of music therapy.
It was also understood that there were many other elements to consider when planners made decisions for a participant, and they had to justify their decisions to a higher authority or colleagues in the NDIA. As not everyone in the NDIA was convinced about the effectiveness of music therapy and s/he felt impelled to care about other planners' opinions on music therapy, at least one planner felt that she should be careful or cautious in supporting music therapy (N5). With regard to this issue, two RMTs with years of experiences with the NDIA suggested that the NDIA planners needed to better understand music therapy, and that RMTs need to use the right language for effective communication. One of the RMTs explained that being on the NDIS providers’ list did not mean that all the requests would be accepted, and each request needed to be submitted with an accepted justification which linked back to the client’s disability and goals (R7).
In order to understand who made the decision to provide access to music therapy and how it was justified, ten cases of participants who were able to access music therapy through the NDIS funding were further analysed. The details of each case are presented in Appendix 2 and Table 3 to show the result of the analysis.
Reasons for funding music therapy and decision-making process during NDIS planning
Out of these ten examples, five were child clients who were under 10 years of age (case example no. 3, 4, 5, 8, 9) and receiving Transdisciplinary Early Intervention Packages (TEIP). Surprisingly, one client (example 8) was given access to music therapy even though the parents did not request it and did not know what music therapy was. The main goals for these children in early intervention were improving their functional abilities and skills in relation to their developmental needs such as improving speech, communication, physical skills, self-expression and articulation of emotions.
Among the other five examples, four school aged children were aged between 14 and 15 years and attending school (case example no. 1, 2, 6, 10), and two could be described as noteworthy in their uniqueness. Example 2 was reported by the NDIS Planner Alicia, and she explained that the 14-year-old boy who was born without eyes needed extra support in accessing adapted print music in order to participate in a community band. Therefore, the planner supported the boy to have practical support from a RMT. She further explained that his parents were paying for the trumpet lessons, which is an expense expected to be paid by any parent, regardless of whether their child has a disability. However, the extra cost for the adapted printed music was a special need resulting from this boy’s disability, so the planner supported this cost.
Similarly, Example 6 appeared to be quite a special case where a teenage boy with autism was participating in ongoing music sessions with a community musician prior to entering the NDIS. Although the main focus of their sessions was expanding song-repertoire and singing together, the NDIS considered it as fulfilling Occupational Therapy (OT) needs and funded this musician as if he was an OT assistant. Under NDIS arrangements, an RMT was funded to twice observe their sessions and provide an assessment. The rationale for funding the other two teenagers was behavioural problems (Example 1) and mental health issues (Example 10), and in both cases, the families were finding it challenging to manage their child’s behaviours and therefore ongoing music therapy was supported.
Only one adult client was funded to participate in on-going music therapy (case example no. 7). This 30-year-old woman had been working with a music therapist for many years before entering into the NDIS. Her family argued that music therapy played an important role in supporting their daughter to share her life experiences with family and relatives living overseas because she would write songs to share with them.
Final Theme 2: The impact of the NDIA’s decisions on both participants and RMTs’ practices was revealed, and RMTs expressed desires to better understand the NDIS approval process (P1, RP6, NPR4, R3, R5, & R1).
The parent participant in this study reported that the outcomes of her music therapy funding requests across several planning processes depended on the planner’s knowledge of music therapy. This resulted in inconsistent outcomes (P1) and these inconsistent outcomes negatively impacted on her son. This mother’s experience was also confirmed by other RMTs who described how planners limited the amount and frequency of music therapy which sometimes caused issues related to therapeutic closure (R6).
While most people believed that the RMTs’ reports were crucial in the planning processes (NPR4), two RMTs found that the NDIA did not approve the recommendations made in their reports. In particular, one RMT described how the NDIA did not follow through on her six monthly progress reports and never responded to her suggestions for a client to access community music programs (R5). Some RMTs described that communicating with the NDIA was often a very slow and complicated process and RMTs felt out of their control at times (R3). Accordingly, most RMTs hoped to be better informed about how the NDIA is structured and actually works (R1).
Final Theme 3: This is an important time to raise awareness of music therapy and RMTs can be active in this process to advocate for music therapy as a necessary service (N3, PR2, R2, & R4).
The three NDIA staff hoped that other planners might get more information about music therapy and RMTs in general, and expected RMTs to actively communicate with the planners to provide knowledge and information about music therapy (N3). They explained that the NDIA planners have mandatory trainings every fortnight and that this might be a useful place for RMTs to start the promotion of music therapy and education of the NDIA planners. Likewise, the parent participant and one RMT thought RMTs should have more active roles in educating and promoting music therapy as a reasonable and necessary service to both planners and parents/families of persons with disabilities. It was also understood that being acknowledged by other allied health professionals was helpful and having these professionals write recommendation letters for music therapy might be extremely important in relation to the NDIS (P2).
Most RMTs agreed that awareness of the benefits of music therapy needed to be increased and some believed it was now an important time to raise awareness in collaboration with the NDIS, since some planners had actively recommended music therapy to families (R4). Since the request for music therapy should come from participants of the scheme and/or their parents’ voices, RMTs believed they might need to prompt and inform participants to do so in the future (R2). Some RMTs expected AMTA to take an active role in more formal aspects of advocacy, and to provide publicly available information and tools, which has since occurred. Formal advocacy from AMTA has included animated videos for social media as part of a broader public relations campaign, an online training course on the NDIS, the establishment of an NDIS sub-committee who has had several meetings with the NDIA, and an active Facebook page that is monitored by that committee. Together with the RMT community, many parents and other professionals have been active in contributing to greater understandings about the benefits of music therapy during this time of transition.
Discussion and Conclusion
Since the inception of the NDIS in July 2013, there have been many ongoing changes. These interviews were conducted in October and November 2015 and the focus on individual stories means that there is no basis for generalisation. Therefore, results and findings of the current study should be understood and interpreted appropriately. Following up the participants in music therapy at the time of data collection and investigating their journey in a longitudinal study could provide additional insights in the future.
Music therapy is recognised by the NDIS as a reasonable and necessary therapeutic service. As the scheme unfolds, there have been cases where families, clients and the NDIA staff have not clearly or consistently understood what it is or how it could be funded under the scheme. Similarly, other allied health and creative arts therapies, have anecdotally reported similar experiences of misunderstanding. The results of this study also suggest that RMTs have found it difficult to understand the scheme at times, showing that the confusion can flow in both directions. This study revealed that the inclusion of music therapy on the NDIS list did not secure families’ rights to access music therapy services and there is no guarantee that people’s choices to receive music therapy will always be enabled by the scheme.
As the roll out of the NDIS continues in the coming decade, RMTs will be required to demonstrate their professional skills and draw on their ethical obligations to advocate for participants’ rights to access music therapy services. This study shows that individual RMTs may have different experiences and face diverse demands as individual planners learn about the kinds of services that participants in their scheme want and desire. During this time, it will be essential to continue to respond to current information about the NDIA and its decision-making processes and it may be useful to engage in research that better explains what music therapists do. Ongoing connection to the Australian music therapy community may serve as one conduit for RMTs in facilitating this ongoing communication, as well as a sensitivity to the desires of people accessing the NDIS and a careful distinction between our own desires to serve and an openness to what people are truly requesting. This kind of ongoing reflexivity will benefit Australian society as we embrace the social model of disability, and all the bio-psycho-social models that come next, ensuring that our actions are in keeping with the famous dictum that heralded the beginning of the critical disability movement: Nothing about us, without us.
This research was conducted with a grant from The University of Melbourne Engagement Grant and support of the Australian Music Therapy Association and the National Disability Insurance Agency.
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