Living with a neuromuscular condition may mean you need to access government support and funding for people with disability. In this section you will find information about various government programs that you may be able to access, including:
The NDIS funds support and services for people with permanent and significant disability, aged 7 to 64. If the Scheme has rolled out in your area and you have been granted access to the Scheme, you will have a planning meeting to develop your individual NDIS plan.
What about children under the age of seven?
There is a separate program under the NDIS that supports children aged zero to six years who have a disability and their families. It is called the National Disability Insurance Scheme Early Childhood Early Intervention (NDIS ECEI) and is being provided by Early Childhood Partners. You can find the Early Childhood Partner in your area by searching your suburb or postcode on the NDIS website.
What support does the NDIS provide?
Supports provided under the NDIS will vary from person to person, based on individual goals, needs and preferences, but may include things such as:
- Assistance to complete everyday activities such as getting out of bed, showering and toileting
- Assistance to clean your house and maintain the yard
- Assistance to participate in community activities, study or medical appointments
- Assessments for and purchase of equipment (assistive technology)
- Home and vehicle modifications
- Disability health-related supports
- Funding to explore housing options
- Assistance to manage your NDIS plan.
For more information see NDIS website, supports funded by the NDIS.
Am I eligible for NDIS?
To be eligible for the NDIS, you must:
- Have a permanent disability that significantly affects your ability to take part in everyday activities or a developmental delay
- Be less than 65 years old when you first access the NDIS
- Be an Australian citizen, hold a permanent visa or a Protected Special Category visa, and
- Live in a part of Australia where the NDIS is now available.
You can visit the NDIS website to check your eligibility.
Where has the NDIS rolled out?
The NDIS is available across Australia. You can check details for your State or Territory on the NDIS website.
How do I access the NDIS?
To access the NDIS you need to make an access request. To get an access request form you can visit an office of the National Disability Insurance Agency (NDIA) or call 1800 800 110. The form can also be downloaded from the NDIS website.
You will be asked to provide evidence about your disability and how it impacts your everyday life. The easiest way to do this is to ask your treating health professional to complete Part F of the access request form or an NDIA Supporting Evidence form. It helps if you can also supply copies of any existing, recent reports or assessments.
No matter how you make an Access Request you will need to provide the NDIA with the same information and evidence to support your application. It is a good idea to keep copies of all documents submitted to the NDIA as sometimes documents can go missing and need to be resubmitted.
How do I prepare for my NDIS planning meeting?
Once you have been granted access to the NDIS you will be contacted to arrange a time to attend a planning meeting.
Take the time to be well prepared for your planning meeting to give yourself the best chance of getting a plan that provides the support you want and need.
There are a number of things you can do to prepare for your NDIS planning meeting including:
- Contact your state or territory neuromuscular organisation for advice
- Have a report from your doctor or specialist outlining your condition.
- Have information about your neuromuscular condition and your support needs. If you have a neuromuscular condition that is progressive it is important to emphasise this to the planner as your plan needs to contain sufficient funding to allow for this. If you can’t find a fact sheet about your condition, the considerations for planning on page 2 of these fact sheets, are useful to think about what supports you might need to be included in your NDIS plan.
- Have a think about your life now and write down the things that are working well and the things you would like to change. This may give you some ideas for writing down some goals for the next 12 months. Do you want to be more involved in the community, try something new, do some study, look for a job or move house?
- Find out about the 3 options for managing your NDIS plan - agency managed, plan managed or self-managed. Seek advice from your state or territory neuromuscular organisation about what might work best for you.
- Complete: Getting ready for your planning conversation checklist from NDIS website
Your state or territory neuromuscular organisation may also be able to provide information and support for preparing for your NDIS planning meeting.
What if my access request is not granted?
There have been people with neuromuscular conditions who have not been granted access to the NDIS. Often this is due to not providing enough information or detail in the access request form to demonstrate the impact the neuromuscular condition has on daily life.
If you think an NDIA decision is wrong, you can:
- Request an internal review of your access decision. Details of how to request an internal review are provided when you are notified of the NDIA decision. You have three months from the decision to request an internal review.
- Complete a new access request if your situation changes or you have new evidence about how your condition affects your daily life, for example, a functional assessment by a physiotherapist.
- Access support from other services and community organisations.
If you have been denied access to the NDIS please contact your state or territory neuromuscular organisation for further advice and support. They are an excellent source of support as you work out your options and where to go for further help. You can also use the Disability Advocacy Finder to find a disability advocacy organisation in your area for assistance.
See the NDIS website, How the NDIS Works.
The NDIS has a number of booklets and fact sheets to support you on your NDIS journey. These include:
- Booklet 1 Understanding the NDIS
- Booklet 2 Planning
- Booklet 3 Using your NDIS plan.
Muscular Dystrophy NSW has an excellent NDIS Toolkit with checklists, fact sheets and forms to help you prepare for your planning meeting.
The Disability Support Guide helps you compare, choose and connect with the best disability support provider to suit your needs. It provides information about your options, what to consider, how the NDIS works, how to get prepare for your NDIS planning meeting, and how to get the right assistance.
NDIS Registered Service Provider List can help you find a provider in your area, once you've identified the types of services that may help you achieve your goals. You can find a provider in your area by searching the Provider Finder on the MyPlace portal or by visiting the NDIS website for a list of NDIS registered providers.
The National Quality and Safeguards Commission regulates NDIS providers to improve the quality and safety of NDIS supports and services. This independent agency can take complaints about services or supports that were not provided in a safe and respectful way or not delivered to an appropriate standard. You can submit a complaint online or by calling the Commission on 1800 035 544.
My Aged Care is the starting point to access Australian Government-funded aged care services. It can assist by helping older Australians (65 years and older), their families and carers to get the help and support they need.
My Aged Care provides:
- Information on the different types of aged care services available
- An assessment of needs to identify eligibility and the right type of care
- Referrals and support to find service providers that can meet your needs
- Information on what you might need to pay towards the cost of your care.
If you are 65 years of age or over and are needing support please call My Aged Care on 1800 200 422. You will be asked a series of questions to identify your eligibility. You may then be referred for assessment for the care that is most appropriate for you.
Each state runs an equipment program for eligible people with disability. The eligibility for these programs may change as the NDIS rolls out in your area. If you have an NDIS plan you may no longer be eligible for these programs. Please check the website for your state program for details.
- Australian Capital Territory ACT Equipment Scheme (ACTES)
- New South Wales EnableNSW
- Northern Territory Disability Equipment Program
- Queensland Medical Aids Subsidy Scheme (MASS)
- South Australia DHS equipment program
- Tasmania TasEquip
- Victoria State-wide equipment program (SWEP)
- Western Australia Community Aids and Equipment Program (CAEP)
Information about financial assistance and allowances for people living with an illness, injury or disability is available from the Department of Human Services website. Some of the payments detailed on this website include
- Disability Support Pension
- Sickness Allowance
- Mobility Allowance
- Pension Education Supplement
- Telephone Allowance
- Rent Assistance
- Child Disability Assistance Payment
- Youth Disability Supplement.
- Payments for people 16 and older
- Payments for children
- Other government and community support services
You can use the Payment and Service Finder on this website to find information about payments that you may be eligible for.
Other payments available from the Department of Human Services
A yearly non-taxable payment to cover some of the cost of products that help you manage incontinence.
A yearly payment to help with energy costs to run medical equipment or medically required heating or cooling.
Financial help and other support services are available if you care for someone with a disability, an illness or who is frail aged.
There are two types of plans that can be prepared by a General Practitioner (GP) for people living with a long-term condition, such as a neuromuscular condition:
- GP Management Plan (GPMP)
- Team Care Arrangements (TCAs).
These plans can give you access to Medicare rebates for allied health services, such as a physiotherapist, occupational therapist or speech pathologist. For more information ask your GP about whether these plans may be able to assist you to manage your condition. This fact sheet contains more information.
Some organisations may offer individual grants for support, equipment or other assistance that is not supplied elsewhere.
You can apply for financial support to help you live your life to its fullest, or if you are experiencing hardship we also have some funds to help out with that too.
Your grant can pay for an item that cannot ordinarily be fully funded or supplied via other agencies (including the NDIS).
It allows you to enjoy life experiences that you might not have otherwise been able to.
Think a sports wheelchair; a development course for something you’re passionate about (like photography); money towards hoist hire costs on a holiday; or help with travel expenses.
To apply for assistance, you must be able to demonstrate a genuine need and explain how the assistance requested will meet this need, but that’s all explained in our Guideline for Applicants, which you need to read before filling in the application form.
Variety – the Children’s Charity helps children and their families with financial support for things like wheelchairs, specialist equipment, therapy, and medical supplies, when they can’t afford it, and when government assistance isn’t available.
- Australian Capital Territory
- New South Wales
- Northern Territory
- South Australia
- Western Australia
Lions Clubs provide funding support for mobility devices for children with disabilities and have a long history of supporting initiatives to help people with disabilities. You can find the club directory for your State or Territory here.
Youngcare’s grants programs are changing lives by providing vital funding for equipment, home modifications and emergency respite care. The grants support young people with high care needs to exit and avoid moving into housing that may not be appropriate such as aged care, hospital or a rehabilitation centre.
The National Companion Card Scheme brings together State and Territory Companion Card programs that enable eligible people with lifelong disability to participate at venues and activities without incurring the cost of a second ticket for their companion.
The cardholder presents their card at participating affiliate organisations to purchase a ticket or pay an entry fee and receive a ticket for their companion at no extra charge. You can find out where companion cards are accepted at the Companion Card website.
The National Card Scheme is comprised of Companion Card programs run by each State and Territory which issue the Companion Card i.e. there is no National Card. Under the scheme, a cardholder may use their card in any State or Territory when on holidays or travelling. If a cardholder permanently moves to reside in another State or Territory then they will need to apply for a new Companion Card from the State/Territory in which they now reside.
Below are links to each of the State and Territory programs: