Down Syndrome Australia
NDIS Independent Review of Pricing Art and Music Therapy
7 February 2025
Our position The Down Syndrome Australia Consortium (DSA Consortium) strongly supports art and music therapy as evidence-based therapies which improve functional capacity. We believe that both peer-reviewed research and evidence as well as personal stories demonstrate that it must continue to be funded at the current evidence-based therapy rate. The Independent Review Terms of Reference state:
“For evidence-based therapy to be funded through the Scheme, there needs to be evidence that the therapy helps participants improve or maintain their functional capacity in areas
such as language and communication, personal care, mobility and movement,
interpersonal interactions, functioning, and community living.”
For our community of people with Down syndrome and other intellectual disability with a focus on chromosomal variation, art and music therapy is vitally important. There are a range of benefits to art and music therapy, including improved:
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Cognition, including memory and attention,
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Communication skills, including flow and volume of speech,
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Motor skills and coordination, including building gross motor skills through rhythm,
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Behaviour and self-regulation, including managing anxiety, emotional recognition and obsessive behaviours,
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Social skills, including working with others and relationship building,
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Skills in working with structure, pattern recognition and creativity. For example, a research paper explored the impacts of music therapy on a person with Angelman Syndrome observed how personalised music therapy was able to utilise the individual’s communication through laughing to more structured and purposeful singing
that improved her communication and autonomy in all aspects of her life.1 Despite limited studies, there is also evidence for beneficial therapeutic use of music therapy in individuals with Prader-Willi syndrome2.
Regarding peer reviewed research and evidence, we support the Art and Music Therapy Association’s (AMTA) submission to you, disability evidence summary 2024. This document details the range of research and evidence that speaks to the efficacy of music therapy and the outcomes music therapy achieves with people with disability. We encourage the Independent Expert to closely review this evidence, while taking into account the limited research which has been funded and undertaken more generally which centres people with disability and their experience.
The DSA Consortium have collated some personal stories from our community of people
with disability and their families, carers and kin; and from music therapists, that
demonstrate the many positive impacts on individuals of these therapies. An extraordinary feature of art and music therapy is that it can have communication, mobility, social and cognitive functional capacity benefits for different people and can benefit many people with disability regardless of support needs, age or capacity.
The DSA Consortium believes these services should be provided by suitably qualified
professionals. As AMTA also emphasise, registered music therapists are health
professionals with a university degree and are qualified to safely use evidence-based therapeutic interventions. If music and art therapy is no longer funded at the higher evidence-based therapy rate, many therapists would no longer be able to operate and the impact on NDIS participants and their families and carers would be disastrous.
The NDIS Independent Expert must recommend art and music remain at the existing pricing arrangements.
1 Freire, M. Sales, I. Rodrigues, M. Turry, A. (2023) From laughing into singing in Nordoff-Robbins Music Therapy: a case study of Carol, 8 December, ISSN: 2675-8105 34-From-laughing-into-singing-in-Nordoff
Robbins-Music-Therapy-a-case-study-of-Carol-1.pdf
2 Grolla E, Andrighetto G, Parmigiani P, Hladnik U, Ferrari G, Bernardelle R, Lago MD, Albarello A, Baschirotto G, Filippi G, Lovato R, Dolcetta D. (2011) Specific treatment of Prader-Willi syndrome through cyclical rehabilitation programmes. Disability and Rehabilitation, 33(19-20):1837-47.
Stories from our community
“Music therapy and singing have always been an important part of my life, throughout my development and in my adult years. When I was young I had a stutter especially on some sounds (eg. W) - I stuttered saying a word like ‘woman’ but I could sing it without stuttering (Eg. ‘Man I feel like a Woman’ by Shania Twain). This is just one example of the many times singing words helped me to overcome my stutter. Other ways music therapy has helped me then and now are controlling the volume of my voice, the flow of words together in both speaking and for reading, assisting my thought processes, supporting my development of routine and structure which is important to me, developing my self confidence, socialisation and being part of a group, participating in community and community events and bringing variety and creativity into my experience. “
- Claire Mitchell, DSA Board member and person with Down syndrome, Queensland “Speaking from personal experience as a mother of a two year old boy with Down syndrome I have seen firsthand how beneficial this therapy is for not only my son but people like him. Not only is my son more engaged in his music therapy sessions but he is using more gestures in his communication thanks to those gestures used in his music therapy class. Unfortunately our speech and occupational therapists do not use music during their sessions and my son is less engaged during them and therefore isn’t absorbing the things being taught as much as those being taught in his music therapy class.
Music and art therapy is not only beneficial to engage the auditory and visual sensory systems in individuals but also for tactile input, vestibular input, fine and gross motor skills and emotional recognition and regulation and therefore should be included in the NDIS approved therapies list.”
- Karina Best, parent of a child with Down syndrome, Western Australia “As a family we would like to show our support for the amazing work that Music Therapists do and particularly the impact they have on our little family.
Music therapy has offered Amos opportunities to develop emotional awareness, express himself creatively with musical improvisation and improve emotional regulation skills using
music based techniques - all of which is evidence based and delivered by highly qualified therapists and in a safe and caring environment.
With unrealistically long wait lists for other therapies like OT and Speech particularly in the North West of Tasmania, music therapy originally stepped in to fill a gap for Amos to meet his therapy needs/goals now we would be lost without it.
Uniquely, unlike other therapies in our experience music therapy allows Amos to work on multiple goals at one time with fun and with so much confidence.”
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Stacey Jackson, parent of a child with Down syndrome, Tasmania “I like going to music therapy with Alex it makes me happy in my heart and not frustrated. With Ann I write my own music and be a rock star on You Tube. Alex helps me practice so I can be in musicals with all my friends and my brother Luka, I am so proud, Mum is so proud.”
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Amos, person with Down syndrome, Tasmania “Katia’s story
Over the last six months, Katia has enjoyed working with Jessica Archibald, Music Therapist. Through these sessions, Katia was introduced and encouraged to begin songwriting. It was from here that “Summer Days” was born. A song written and performed by Katia herself. What an achievement and one that completely blew us away. Popular feedback from those in our local community that heard Katia perform her song was that she should enter into the local Rotary Club youth music contest.”
- Excerpt from ‘Summer Days’ - Katia’s song, published here. Katia is a person with
Prader Willi Syndrome
“Our child’s early involvement in music groups and ongoing exposure to music and drama classes played a crucial role in their development, particularly in supporting his speech, communication, and social interactions. Music therapy has proven to be a highly effective tool in helping children like our child improve their cognitive and emotional skills. Through regular music sessions, our child not only enhanced their vocal abilities but also gained confidence in expressing themselves, which positively impacted their social interactions and language development to this day.
The structured environment of music therapy provided our child with a safe space to experiment with communication in ways that were both fun and therapeutic, allowing them to connect with others, build self-esteem, and experience an understanding of his delights/thrills with their emotions. Moreover, music therapy often fostered a sense of rhythm and overall well-being. It is clear that our child’s musical journey has been an integral part of their growth, offering them a unique blend of support that goes beyond traditional speech and language interventions.
While I value the contribution of traditional therapies like speech therapy, occupational therapy, and physiotherapy, I noticed that our child was often more engaged and independent when it came to music-based activities. At home, they were more likely to initiate speech or chants from the music groups, which was more spontaneous and self directed than the structured drills from speech therapy. In music, our child took the lead, deciding what to sing and when, and I was able to follow their lead, rather than always being the one to prompt and guide. This child-led communication felt different and more natural, as it allowed our child to direct his own learning. Even though I had my own busy schedule and responsibilities, I found that participating in these music activities with our child felt more rewarding and enjoyable, as it allowed me to blend domestic tasks with our shared musical moments.
If funding for music therapy had been taken away, or music therapy taken away for good, it’s hard to imagine how we would have navigated those early years. The skills our child developed in music and drama weren’t just about language—they were about emotional expression, self-regulation, and building confidence. Without these avenues, I would have felt a lot more pressure to rely solely on traditional therapies, which, while beneficial, didn’t provide the same level of engagement or joy for our child. Our bond might not have been as strong or positive, and my ability to manage the challenges of parenting, especially with a child with Down syndrome, would have been much harder. Music therapy provided a crucial outlet for both of us, and I truly believe it was instrumental in shaping the strong, positive relationship we have today.”
- Parent of a child with Down syndrome, ACT “In a technical sense, music therapy is a research-based allied health profession in which music is used to actively support people as they aim to improve their health, functioning and well-being. It can help people of all ages to manage their physical, mental, and emotional health and enhance their quality of life. Research has shown that rhythm and music affect multiple areas of the human brain at once on a subconscious level. Because of this fact,
rhythm can be used to help build new connections in the brain (called neural pathways) thus improving brain function and allowing one to lead a more productive and functional life. Music is one of the only resources that can be used to engage the whole brain at once. When correctly applied by a music therapist, it can be used to practice, develop, enhance, and successfully meet age-appropriate milestones in all areas of development.”
“In a non-technical sense, music therapy is fun, enjoyable, and motivating. There are so many goals that music therapy can work on: from functional and developmental goals to social-emotional goals. The best part is that music therapy provides people with a safe, familiar, strength-based approach to explore and expand their capacity to reach their goals.”
- Kate Fletcher, Registered Music Therapist and Down Syndrome Queensland community member
About the Down Syndrome Australia Consortium
Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is an inclusive society where people with Down syndrome have full participation and equal enjoyment of all human rights.
Down Syndrome Australia is one of eleven National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability and their families and supporters, with a focus on intellectual disability caused by chromosomal variations.
People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co occurring neurodevelopmental conditions, communication disabilities and health issues.
It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives.
For people with these chromosomal variations, their families and supporters play a significant role in their lives from advocacy to skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.
All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (CRPD).
Our consortium members are:
- Down Syndrome Australia and its’ member organisations - ACT Down Syndrome and
Intellectual Disability, Down Syndrome Queensland, Down Syndrome Tasmania,
Down Syndrome Victoria and Down Syndrome Western Australia
- Angelman Syndrome Association Australia
- Australian X and Y Spectrum Support
- Cri du Chat Support Group
- Fragile X Association of Australia
- Prader-Willi Syndrome Australia
- Smith-Magenis Syndrome Australia
- Turner Syndrome Association of Australia
People with intellectual disability with a focus on chromosomal variations Across the DSA consortium, there are an estimated 20,000 people in Australia with these chromosomal variations receiving support, information and advice, of which Down syndrome is the most common.
Our Work
Down Syndrome Australia is also recognised as a Disability Representative and Carer Organisation (DRCO), working with the NDIS.
Many of our Consortium members deliver a range of Information, Linkages and Capacity Building (ILC) grants and other projects across the country. These projects span information, programs, services and other forms of community supports for people with disability, their families and supporters – including medical professionals and carers.
We ensure people with disability are at the heart of our work, utilising best practice principles such as genuine co-design and co-delivery across our projects, and supporting the community with accessible information. We have been internationally recognised for our commitment to organisational inclusion – actively involving people with disability across our organisations: within the board, advisory network, ambassadors and project staff.
For more information contact:
Darryl Steff
Chief Executive Officer
Down Syndrome Australia
Email: Darryl.Steff@downsyndrome.org.au
Website: www.downsyndrome.org.au