Imagine you are sitting in your paediatrician’s consulting rooms and she has just confirmed your long-standing suspicion that your gorgeous 8-year-old has autism.
Your mind is spinning – what does this mean for my child, have I done the right thing having him diagnosed, how will my partner feel about this “label”, should I tell the school, should I tell my child, how will I afford the therapies he needs and where can I find the right supports?
And before you can catch your breath the doctors says good-bye and you are standing alone, frozen on the pavement.
I have been in your shoes and know the feeling all too well of being completely overwhelmed, while processing this new piece of information called a “diagnosis”.
But help is at hand – and potentially lots of it. You just need to know how to find it.
Some of the questions you might have include:
• Is my child eligible for funding under the National Disability Insurance Scheme (NDIS) or Early Childhood Early Intervention (ECEI) support?
• How do I access the NDIS or ECEI?
• Once I have a plan, where do I start?
• How do I find the right services for my child?
Accessing the NDIS will depend on your child’s functional capacity rather than their type of disability.
There are many resources to help you understand the access requirements:
• How to apply for NDIS
• How to access the NDIS under ECEI
Once your child receives their NDIS plan it is up to you, as their nominee, to ‘activate’ their plan by engaging services to help your child achieve their goals. This can seem like an insurmountable task when you don’t know what services are available. Here are a few tips on how find the right NDIS services for your child.
It’s important to first understand the three categories of funding in your child’s NDIS plan: core, capacity building and capital. Many children receive most of their funding in capacity building for therapies such as speech, physiotherapy, OT etc.
You can choose how the funding will be managed: NDIA, Plan or Self-managed. The important thing to know is being plan or self-managed will give you greater flexibility in which providers you can choose and how you pay them.
Connecting with services:
How you connect with NDIS services and providers depends on your capacity as a parent to research, source and choose providers.
If you have support coordination funded in your child’s plan, their job is to connect you with local service providers. If you don’t have support co-ordination, ask your ECEI (Early Childhood Early Intervention) Partner or LAC (Local Area Coordinator) for help – they have a responsibility to get you started and connected with providers.
Platforms like MyCareSpace offer a free connection service and access to a greater variety of innovative providers. You may prefer the self-serve option via the directory which allows you to choose providers based on their location, user reviews, waiting periods and languages.
Word of mouth is a very powerful way of getting recommendations from other parents with a lived experience for supports like a local playgroup or therapist. Most local council websites also have a community directory of disability services. Consider joining Facebook groups relevant to your child’s disability and ask them for recommendations.
Navigating the information:
The NDIS website provides booklets and factsheets and lists of registered providers. Other sources may present this same information in a more practical, user-friendly way. Peak bodies often provide easy to understand resources e.g. Association for Children with a Disability, AMAZE, Autism Awareness or Down Syndrome Australia, or the Multilingual Disability Hub.
The Self Manager Hub has lots of useful resources on how to manage your supports. The MyCareSpace resources page offers a wide range of resources written in plain English.
Keeping up to date
It’s important to keep up to date with the NDIS even if its time-consuming. Consider signing up to the NDIS newsletter and following them on Facebook. Use your other sources of information to simplify these changes if they are unclear.
The key thing to remember is while you may have chosen a service provider, that does not mean you are stuck with them. You are always free to change your mind if a provider isn’t working for you and ensure your service agreement includes how to end the agreement. Never settle for a service you are not happy with.
As you gain more knowledge and information, your confidence will increase in the way you approach the NDIS and how you choose providers. Access lots of different sources of information to make informed choices – this could make all the difference to your child achieving their goals way beyond what they ever expected.
MyCareSpace is a national online platform that supports people living with a disability, their families and carers, helping them connect with service providers in their local area as well as providing them with easy to understand information about the NDIS. Our service is free for people living with a disability and available online or by phone, email or Live Chat. We also help people understand their NDIS funding options and support them in finding the services they need. For more information, visit https://mycarespace.com.au/
Nicole Gamerov FCA, Founder and CEO
Nicole Gamerov FCA has had a 20 year successful career in Finance. She is a qualified Chartered Accountant. Nicole worked for global reinsurer Swiss Re for 15 years during which she established their Public Sector Team for Australia, New Zealand and the Pacific. During this time Nicole developed innovative insurance products for some of the largest State based personal injury schemes and deep insights into lifetime insurance schemes such as the NDIS. She founded MyCareSpace in 2017, with the vision to help people living with a disability live extraordinary lives. Living with a disability is deeply personal for Nicole as her mother is blind, and her family has experienced firsthand how challenging it is to find services and supports.
Her passion is to empower people living with a disability with the information they need to make informed decisions and in so doing live independent and full lives.
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