AMTA’s Submission to the NDIS Joint Standing Committee, NDIS Planning - September 2019

The Australian Music Therapy Association (AMTA) is grateful for and welcomes the opportunity to contribute to the NDIS Joint Standing Committee, NDIS Planning. AMTA recognises the significant contribution NDIS planners make in supporting participants to realise their goals and potential to participate in life more independently and fully. However, AMTA has concerns around the education and training of NDIS planners that is often resulting in the inappropriate refusal of music therapy funding for NDIS participants. In response to the NDIS Joint Standing Committee, AMTA has prepared this submission which contains:

Information on AMTA and music therapy
Responses to the Inquiry’s Terms of Reference (specifically a-c, e, and g-k)
Recommendations
Supporting documents: o AMTA’s Music Therapy in Disability: Information Booklet (Attachment A)

o NDIS Music Therapy Funding Complaints Recived by AMTA – Email Extracts from NDIS

Providers (Attachment B)

AMTA and Music Therapy

Founded in 1975, the AMTA is the professional peak body advocating for the music therapy profession in Australia and supporting its Registered Music Therapists (RMTs) in providing evidence-based and safe music therapy services to vulnerable and unwell Australians. Governed by a Constitution and Code of Ethics (including Standards of Practice and By-Laws for Grievance Procedures), AMTA ensures all its RMTs adhere to the highest professional standards and maintain expert competency through mandatory participation in its professional development program.

Music therapy is a research-based practice and profession in which music is used to actively support people as they strive to improve their health, functioning and wellbeing. Music therapy is the intentional use of music by a university trained professional who is registered with the AMTA. RMTs draw on an extensive body of research and are bound by a Code of Ethics that informs their practice. They are employed in a variety of sectors including health, community, aged care, disability, early childhood, and private practice. Music therapy differs from music education and entertainment as it focuses on health, functioning and wellbeing. (www.austmta.org.au)

There are currently 626 RMTs in Australia. However, there are only 143 registered NDIS providers of music therapy services. The predominant reason for this small number is the frustration AMTA’s registered NDIS providers experience from the constant misunderstanding and miscommunication regarding music therapy’s position within the NDIS. Music therapy is listed as a reasonable and necessary support to address NDIS participants’ needs in the capacity building budget (See ‘NDIS Provider Guide to Suitability’ Pages 14 & 16: https://providertoolkit.ndis.gov.au/sites/default/files/provider_registration_guide_to_suitability.pdf

Over recent years, AMTA has liaised with NDIA staff to enhance communication and raise awareness of music therapy’s role in meeting the needs of NDIS participants. In response to the NDIA’s request, AMTA has shared information and developed comprehensive resources outlining evidence (e.g. published

research, case studies and clinical judgement) supporting music therapy’s role and effectiveness in disability. These resources were all intended to assist the NDIA and their planners in better understanding what music therapy is and is not.

Despite this clear information and ongoing assurance from the NDIA that music therapy is supported by the NDIS, planners are continuing to convey misinformation to Local Area Coordinators and NDIS participants. In numerous locations around Australia, NDIS planners have repeatedly told participants that they cannot access music therapy with their funding, and have refused to include music therapy funding in their plans. This has continued despite reporting evidence specific to the individual participant, reference to the Guide to Suitability, reassurance from NDIA to address AMTA’s concerns, and provision of the AMTA published resources including “Music Therapy in Disability: Information Booklet” (Attachment A).

Responses to the Joint Standing Committee Inquiry into NDIS Planning Terms of Reference

A. The experience, expertise and qualifications of planners - Unfortunately, nation-wide AMTA members have experienced the results of NDIS planners’ limited training, awareness and understanding of funded services, how or why participants could access them, and the potential benefits of such services. For example;

At 7 out of 8 client plan reviews in the Hunter Region between April and June 2019, participants were told variously that ‘music therapy isn’t funded’, ‘music therapy is not evidence-based’, ‘music therapy is only funded in very rare circumstances’, ‘music therapy is only funded for non-verbal clients’, ‘you’ll need to find an occupational therapist who does music’, ‘you can choose to access music therapy as you self-manage your funds, however be aware if you are audited you will probably have to pay it back’. (see Attachment B for email extracts from music therapy providers forwarded to AMTA).
Just this month (September 2019) music therapy funding was declined by another Hunter region LAC at St Vincent De Paul. The planner stated that music therapy is not funded and that ‘internal correspondence’ confirmed this on the basis of no evidence for its effectiveness.

When NDIS planners convey such misinformation, it results in participants not requesting or accessing music therapy and, consequently, not having their needs or goals adequately met. It also results in reducing the quality and availability of services as providers spend significant time following up these cases to advocate on behalf of their NDIS participants. This ongoing confusion surrounding music therapy’s inclusion in the NDIS, is resulting in providers choosing not to register with the NDIS, impacting negatively on an already overburdened and thin market.

B. The ability of planners to understand and address complex needs - Unfortunately, nation-wide our members have experienced the outcomes of NDIS planners’ limited training, awareness of complex disabilities and the impact these have on participants’ daily lives. In multiple regions, NDIS planners have made inappropriate remarks about individual disabilities and diagnoses. They have made comments unknowingly referencing their lack of knowledge regarding wheelchair use, lifelong multiple diagnoses, and the expert skills and therapies required to respond to and effectively meet the needs of NDIS participants. For example;

A participant in the Hunter Region with a diagnosis of Cerebral Palsy was told by a planner at a review meeting “oh I thought you had cerebral palsy; I didn’t know you would be in a wheelchair”.

Numerous participants seeking music therapy have been told by their planners to employ other therapists or carers to use music, rather than approving funding for a qualified music therapist. This disregards the skills and expertise of an RMT who has the training to use evidence based methods to effectively and safely meet the needs of people with complex disabilities.

C. The ongoing training and professional development of planners - Quality and accuracy of training to planners - A report was commissioned by the NDIA to assist with making decisions about the delivery of services to preschool children with autism, and their families and other carers: Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers. A report prepared by Jacqueline M. A. Roberts Griffith University and Katrina Williams, University of Melbourne (February 2016).

This report appears to be used to inform planners of music therapy work with all NDIS participants, regardless of whether they are preschool children with autism. This is evident in the language consistently used to decline requests for music therapy funding; namely that music therapy is “not evidence based” or is “emerging”. These terms come from the National Autism Centre (2015) report used by authors of the NDIA report.

AMTA has a number of concerns regarding this issue:

Information used from this report appears to have been generalised across all refusals for requests for music therapy, not just for children with autism.
Music therapy is a discipline along with other allied health professions. Disciplines in themselves cannot be described as evidence-based. Rather, methods used within allied health disciplines (including music therapy) can be described as evidence-based. The NDIA continues NOT to reference the researched evidence supporting music therapy methods, and instead references music therapy as a single method with no evidence-base. This in incorrect and creates confusion among participants and their carers and families.
The NDIA report includes a list of evidence-based interventions and states that these can be delivered by professionals, parents/carers and siblings/peers. In a study investigating music therapy practices, Kern (2013) found that of the 328 practicing music therapists surveyed, the majority were incorporating the eleven identified evidence-based practices in their music therapy sessions with children and young people with autism from the 2013 National Autism Centre guide. RMTs working with NDIS participants also incorporate evidence-based interventions into their service delivery with NDIS participants.
The report used to inform the NDIA is now several years old and does not take into account current research in music therapy. Ongoing communication between the agency and the AMTA will ensure that resources and information to planners remains current.

In addition, AMTA members have experienced clear evidence of planners not being adequately informed of new changes to NDIS guides. For example;

At 1 July 2019, the new NDIS price guide clearly indicates an allowance for providers to charge non- face-to-face services provided to participants (e.g. progress notes), separate/in addition to face-to face time. However, an NDIS planner in the Barwon region informed a participant’s representative 3

that they would not approve the recommended funding for non-face-face time as this was ‘taken into account’ in the hourly rate. This information is incorrect. When the issue was raised directly with an NDIA staff member, they responded that NDIS planners ‘don’t need’ to be trained and updated on such matters.

E. Participant involvement in planning processes and the efficacy of introducing draft plans - AMTA members have been concerned by participants’ levels of distress when their choices and opinions have been disregarded by NDIS planners. For example;

After receiving new NDIS plans for both of her children, one parent who was dissatisfied with what had been approved and attended her local NDIS office to discuss her concerns. She informed the planner that the recommendations made by her children’s allied health professionals had not been approved. In response to this, the planner stated that ‘therapists lie’. This concerning comment disregards the allied health professionals’ expertise and the parent’s choice of services to address her children’s needs.

G. The reassessment process, including the incidence and impact of funding changes - AMTA members have witnessed the negative impacts on NDIS participants due to the inconsistent nature of the planning process. Participants plans are often reviewed prematurely, and new plans are activated months prior to the end date of existing plans. This results in existing funding being ‘overwritten’, impeding access to services being provided in existing plans and not budgeted for in new plans. For example;

An NDIS participant budgeted for fortnightly music therapy sessions with adequate funding until the plan end date. The plan review meeting was held 2.5 months early (not at the request of the participant) and a new plan was activated immediately. In the new plan, the capacity building budget was reduced by $5000. The participant could no longer access all of their funded services and the frequency and choice of therapies had to be altered. Two and a half months of budgeted funds for music therapy were lost and both music therapy and psychology input ceased due to insufficient funding.

H. The review process and means to streamline it - AMTA members and the NDIS participants they provide services to have experienced extreme delays in receiving responses to complaints, requests for information and the processing of reviewable decisions. For example;

A member in the Hunter Region followed up with the LAC and the NDIA six months ago regarding misinformation given about music therapy in the planning process. No response has been received despite several follow up emails and phone calls.
The AMTA contacted the NDIA five months ago to inform them of ongoing issues around misinformation and/or refusal of music therapy funding by NDIS planners (and partner organisations) dating as far back as 2016. AMTA has not received a response from NDIA despite follow up emails.

I. The incidence of appeals to the AAT and possible measures to reduce the number - The AMTA is aware of three NDIS participants accessing music therapy that have gone to the AAT to appeal a decision to not include or to reduce funding for music therapy in their NDIS plans. One case (Barwon Region) was successfully appealed and two (Hunter Region) are currently being processed. These appeals could have been avoided if NDIS planners had received adequate training around the complexity of the participants’ needs, and the skills and appropriate therapies (including music therapy) available to meet these needs.

J & K. The circumstances in which plans could be automatically rolled-over & the circumstances in which longer plans could be introduced - For many NDIS participants, the planning process causes unnecessary distress. AMTA members work with participants who have described their experience as stressful, time consuming and repetitive. For parents and caregivers of people with disabilities, having to discuss their needs on a yearly basis can be an emotionally taxing process. The needs of adults with severe and profound intellectual disabilities do not often change significantly within a twelve-month period, particularly around their core funding needs such as accommodation and consumables. In these cases, plans could be rolled over or a longer plan introduced.

Recommendations

The AMTA has dedicated considerable time and resources to providing information requested by the NDIA. This includes the development of the Information Booklet (Attachment A) and listings of published research and case studies providing clear evidence for the ability of music therapy to address NDIS participant goals in multiple domains. Despite this, the AMTA continues to receive complaints from its members regarding some NDIS planners’ misinformation about music therapy and ultimately their refusal to fund music therapy in NDIS plans. The AMTA strongly recommends urgent and substantial improvements to NDIA’s internal communication processes as well as the consultation processes between NDIA and its stakeholders (including the AMTA and the Allied Health Professions Association etc). Improved collaboration between NDIA and industry experts and the subsquent internal dissemination of information to NDIS planners, will ensure education and training of NDIS planners is up to date, relevant and informed by current evidence and best practice. This will asist NDIS planners in better supporting participants, improve planning processes, reduce the number of AAT appeals, and enhance the overall experience of the NDIS system for participants and providers.

Australian Music Therapy Association (AMTA)

Kern, P., Rivera, N., Chandler, A., Humpal, H., (2013) Music therapy services for individuals with autism spectrum disorder: A survey of clinical practices and training needs, Journal of Music Therapy, 50, 4, p 274– 303, https://doi.org/10.1093/jmt/50.4.274