On this page, you'll find resources for health professionals and disability support workers, including:
If you are looking for Clinical Care Guidelines and considerations for a specific neuromuscular condition these can be found under the Useful Resources tab within each of our condition guides.
There are resources available for primary care and allied health professionals about neuromuscular conditions.
This United States website outlines the steps to identify paediatric muscle weakness and signs of neuromuscular disease. It provides information about knowing the signs of weakness, CK testing, advances and treatment, parent resources and an excellent video library.
Primary Care / General Practice
This document from the FSHD Global Research Foundation includes primary care practice points, genetic causes, diagnostic pathway and management of FSHD for general practitioners and primary care providers.
Allied health professionals
This is a consensus document providing guidance on good practice management of infants, children and young adults with neuromuscular disorders (NMD) from the Association of Paediatric Chartered Physiotherapists. This document is designed to be a resource for learning about physiotherapy assessment and management in NMD.
This guide from Royal Children's Hospital Melbourne provides an outline of hydrotherapy for children with neuromuscular conditions.
These general guidelines from Parent Project Muscular Dystrophy in the United States outline methods for management of range of motion in children and adults with DMD. These are guidelines based on currently available research and information known about muscle and the natural history of Duchenne.
This document from the FSHD Global Research Foundation includes practice points, genetic causes, diagnostic pathway, management of FSHD and advice about mobility aids and orthoses for allied health professionals.
A resource from the FSH Society (US) with recommendations for physiotherapists (physical therapists) working with clients with FSHD.
This guide from the Charcot-Marie-Tooth Association (US) covers physiotherapy (physical therapy), occupational therapy and managing fatigue.
From Charcot Marie Tooth Association (US). A comprehensive fitness program for all levels and abilities that focuses on the following five areas: Flexibility, Balance, Strengthening, Endurance and Function. Developed by CMTA Board Member Steve O’Donnell in partnership with renowned Physical Therapist/Neurologic Clinical Specialist Mike Studer.
This is a brochure from Myositis Association Australia for physiotherapists, occupational therapists and nurses.
There is a range of networks, consortiums and centres that link, support and promote best-practice for medical and allied health professionals working with people with neuromuscular conditions.
- Australasian Neuromuscular Network
The goal of this network is to establish a cohesive, integrated neuromuscular network to ensure excellence in diagnostic methods and clinical management, and equal access to clinical trials and new therapies, for all individuals in Australia and New Zealand affected by neuromuscular disorders. The network links clinicians, pathologists, counsellors, researchers, allied health professionals and advocacy groups for the benefit of children and adults affected by neuromuscular disorders. Membership is FREE. Anyone who has an interest in neuromuscular disorders is welcome to join. To become a member, email firstname.lastname@example.org
- Kids Neuroscience Centre
The Kids Neuroscience Centre is a team of scientists, doctors and allied health professionals who investigate the causes, consequences and therapies for life-limiting muscle and brain disorders. Alongside world-leading laboratory research into the genetic and biological mechanisms of disease, the Centre operates a research-based diagnostic service, helping to provide children and families with accurate diagnoses and disease-specific treatment, and a clinical trials unit that allows children to participate in international clinical research and access the latest treatment options.
- Perron Institute for Neurological and Translational Science
The Perron Institute undertakes pioneering research on a broad spectrum of neurological disorders, including muscular dystrophy and myositis. It brings together laboratory scientists, neurologists, neurosurgeons, clinical psychologists, physiotherapists and other health professionals to tackle the major research challenges in neurology.
- Asian Oceanic Inherited Neuropathy Consortium (AOINC)
In 2016 the Asian Oceanic Inherited Neuropathy Consortium (AOINC) was established. The AOINC’s belief is that bringing together a network of clinicians and scientists will enable collaboration to achieve greater insights into the causes and natural history of inherited neuropathies in the region thereby leading to the discovery of effective therapies and improving patient care.
- Inherited Neuropathy Consortium
The mission of the Inherited Neuropathy Consortium - Rare Disease Clinical Research Consortium (INC-RDCRC) is to conduct clinical research to learn more about Charcot Marie Tooth with the goal of developing new and better treatments to improve the care of patients with inherited neuropathies. It seeks to provide up-to-date information for patients to help them manage their diseases and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities
- The Cooperative International Neuromuscular Research Group (CINRG)
The Cooperative International Neuromuscular Research Group (CINRG) network joins together over 20 clinical and research sites from around the world to perform studies that examine promising, therapeutic interventions that may improve quality of life or extend life. Since its start in 2000, it has remained the largest multidisciplinary and cross-institutional network of clinicians and scientists conducting neuromuscular research studies.
- In 2016 the coordinating centre for CINRG transitioned to a neuromuscular specialised contract research organization (CRO), The Therapeutic Research in Neuromuscular Disorders Solutions (TRiNDS). TRiNDS works to monitor and establish both network and protocol-specific standards to ensure the quality and safety of clinical research protocols run through the network.
- Treat NMD
Treat NMD is a global network promoting clinical research and best practice care for neuromuscular conditions. You can find standards of care for neuromuscular conditions as well as information about conditions and clinical trials.
Becoming a disability support worker
If you are looking for a very rewarding and flexible career, disability support work might be the career choice for you.
Disability support workers provide a wide range of care, supervision and support for people with a disability. Support may be provided in the home, in the community, in residential establishments, in education and employment settings and/or in clinical care. Disability support workers are a great source of companionship and emotional support for people living with a disability and assist with independence and community participation.
Disability support work can be very flexible and may require you to work evenings, weekends and public holidays.
In Australia, you are able to work as a disability support worker without formal qualifications and receive on the job training. However your job opportunities may be improved by obtaining formal qualifications.
Information on the skills and job requirements, including places to undertake formal qualifications, can be found here:
- How to become a disability support worker in Australia from Career FAQs
- How to become a Disability Support Worker from The Good Universities Guide
Having a conversation with other disability support workers or service provider organisations about how to get get started may also be useful. See the information below on the NDIS Disability Support Matching Platform.
It is important to remember that working as a disability support worker is a very trusted position, where you see people at their most vulnerable and are privileged to a level of information beyond most workplace relationships. This level of trust is important to ensure the person you are supporting feels comfortable and can rely on you. However, it is important to remember this is still a professional arrangement and you must maintain moral, ethical and social boundaries.
Opportunities to work as a disability support worker
With the development of the National Disability Insurance Scheme (NDIS), there are a lot of opportunities for people who would like to increase their employment opportunities by directly working with a person with a disability either as an employee or a contractor, or by working for a service provider.
The NDIS provides a Disability Support Matching Platform. This platform allows you to match your skills and experience with individuals or service providers looking for disability support workers.
If you are providing services under the NDIS you may be required to meet specific requirements, depending on whether you are working as an individual or for a registered service provider. The For Providers section of the NDIS website is an excellent starting point to find out more information, particularly if you will be working directly with an individual/family under the NDIS.
If you are working directly with an individual or family, regardless of whether this is under the NDIS or not, you should consider a service agreement. A service agreement is a document that simply outlines how and when supports will be delivered, it clearly outlines what each party has agreed to. For more information, the NDIS website has information about service agreements and making a service agreement.
When working directly with a family or individual you may be engaged as an employee or as an independent contractor. There are pros and cons to each arrangement and it really depends on what suits the family/individual you are working with and your own needs. The ATO has information available to help you understand the difference between employees and contractors.
Providing support services to a person living with a neuromuscular condition
Whether you are just starting work with a person with a neuromuscular condition or have been working with someone for a while and would like to learn more, The Loop has excellent information to help you provide the best support. Here are some great places to start:
- Condition guides – these guides can give you a general understanding of the neuromuscular condition, how the person you are supporting could be affected and other information specific to the treatment and management of their condition. As each neuromuscular condition is different, you should also ask the person you are supporting, or their family, for more individualised information about how their condition affects them.
- Equipment – this section will provide you with a great overview of the types of equipment the person you are supporting is using. You may be required to assist with equipment and it’s vital to understand how to use the equipment safely. Speak to your employer to arrange training or instructions for equipment.
- Living Life - this part of the Loop contains community content, where you can access stories and guides that offer lived-experience wisdom from people living with a neuromuscular condition.
- Inclusion and respect – learn simple ways to ensure you are treating people with disability with respect and dignity.