As we spoke about at the conference in Brisbane, the NDIS can be difficult for people with disability to navigate. This includes people that can have ‘invisible disabilities’, such as Agenesis of Corpus Callosum. One thing that is important to remember is that not all people’s experiences with disability accurately crosses over to another

disability (ie working with physical disability, to working with intellectual disability), and the NDIA staff are not exempt from this. Unfortunately, as someone who has a rarer diagnosis, you will need to educate your NDIA staff member from the very first interaction. Education and awareness about how ACC affects you and your life is the first step of advocating for yourself.

Tips for access:

  • Include an information brochure on ACC and highlight the parts you feel are specific for yourself.
  • Ensure the evidence you are handing in talks about how ACC affects you in 1 of the 6 domains (mobility, learning, communication, social interaction, self- care and self-management), rather than focusing on the diagnosis itself. You want someone who has never met you before to have an accurate picture of what your life looks like on a day to day basis. For some people it may be beneficial to have an occupational therapist write a report about the functional impact of ACC, for others it may be a Psychologist
  • Put contact details down for doctors, specialists or supports who know you well, so if need be, the NDIA can contact them for clarification
  • You will need to make sure that it is written somewhere that your condition is permanent
  • There are some people with ACC who also have other conditions that can gain them automatic entry to the NDIS (no need for additional functional impact evidence). This list can be accessed on
  • Access is deficit based, so if you feel you need support to go through the process, contact your local area coordinators (PITC – partners in the community) for access support.

Once you have completed and sent off your documentation (scan and email, never via post), you will need to wait for a decision of access met, or access not met. With an access met decision you will proceed to planning. If you are made access not met, it would be advisable to contact your local NDIS appeals advocate for some support and guidance (should you wish to have this decision reviewed). A NDIS appeals advocate can help you go through the documentation and understand why you were made access not met as well as figure out what evidence you may need to source for an access met decision.

Tips for planning:

  • Take another copy of the original brochure on ACC that you highlighted to show the parts you feel are specific. Your original one should be on your file, but it is always better to be safe than sorry.


  • Have your goals, participant statement and daily life already written. This will save about 30 minutes in the planning conversation itself. Goals should be broadly specific, broad enough to cover funding, specific enough to measure.

Your participant statement is about you, what you like to do and who you like to do it with, and your daily life is what a normal day looks like for you.

  • Have a think about the type of support you would like to utilise from NDIS. If you know you would like to explore speech therapy, let your planner know so:
  1. They can make sure your goals cover that and
  2. They can make sure they put funding in the right category for you to explore that option.
  • If you don’t feel comfortable discussing with a stranger how your everyday looks, you can take someone with you (relative, friend, advocate) to support you during the meeting. You can also take in notes about how your day to day life looks.
  • Take a look at the WHODAS before you planning conversation. This is a severity tool used to discuss day to day difficulties from disability.
  • Answer all the questions to the best of your ability. Make sure that you are answering the questions, rather than the planner answering them for you. If the planner is not asking you the questions in the system, then they are answering them from their perspective of what you need, rather than asking you. Perspective can be a funny thing, especially when it comes to invisible disabilities. You can politely ask the planner to read the questions to you in order and to expand on them if you are having difficulty understanding (some of them are a little odd).
  • You can also ask your planner to have visual cues for you that help you. Some questions have sliding scales (mild, moderate, severe or yes, sometimes, no).
  • Take two copies of everything with you. One to give to the planner to upload onto your file, and one for you to take home. This means should your plan not turn out the way you expected and you had your goals and expectations written down, you will be able to say in your review that ‘this is what I gave the planner and this is what I got in return’.
  • Remember that as the participant of the NDIS, this plan is for you. It is for you to achieve the goals you want to achieve over whatever timeframe you wish. You do not need to do everything in the first year, you can use your first year to explore options.

Keep an eye out on Speaking Up For You website as there will be some great NDIS in English breakdowns for people with all disabilities.

by Courtney Wolf