Who is this guide for?
Do you have Prader-Willi Syndrome? This guide has been prepared to help you when you work with someone from the National Disability Insurance Scheme (NDIS) to create your personal plan. At this time, you will be asked lots of questions. There will be a lot to think about, so this guide will help you prepare.
Your NDIS plan will help you maintain a healthy and happy life – your safety and wellbeing is important.
You will be invited to have an appointment with the NDIS. It is really important that you talk to your parents, guardian, and other people who may care for you or support you, before going to the appointment. It’s also important that one or two of those people go to the NDIS appointments with you. They can help you explain to the NDIS person all the things you do and need for your life. They can also help you get any letters from your supporters that the NDIS needs.
TIP: These people can be your own NDIS working team.
Going to your appointment
The NDIS will help you to be healthy and able to enjoy your life. The NDIS pays for the support you will need to be able to do those things. This can include the things like food and exercise plans, your continued work, activities, sport and hobby plans and the transport support you need for these. Remember to tell them about any pets you have and how you help with their care.
The NDIS will want to get to know you.
They will need to know:
- where you live and whether you like it
- who is important in your life
- what things you do each week.
This may include things like:
- work you may do
- support you receive
- sports you play or go to watch
- hobbies you spend time doing
- social activities with friends and groups
- training courses you are doing
- visits to family if you live away from home, and
- regular appointments you have.
The NDIS will ask you about your goals. This really means:
- the things that you would like to keep on doing
- new things you would like to try.
Before you go to your NDIS appointment, it will be helpful to talk about goals with your NDIS working team. Tell them about any goals or dreams you might have for something that hasn’t happened yet in your life. Perhaps there might be a trip you would like to make or a place of importance to you that you would like to visit. You may need someone to teach you how to plan and to support you to safely and successfully achieve these goals. Maybe there is a new sport you would like to try or a new skill you would like to learn. This is a good time to talk about the support you would need to be able to plan for those things to happen.
You may be living at home and this may be working well for you and your family. Some people with PWS decide they would like to be able to live away from their families as they grow older. If this is important to you, take time to talk to your family and your NDIS working team about it before starting the planning meeting. Living away from home in a way that enables you to be as independent as possible, while staying happy, healthy and living a very fulfilling life, takes a lot of careful planning and thought. You will need a good team around you to help you research options and costs, and to plan for this important transition. Your NDIS working team will help you explain your wishes to the NDIS planner.
TIP: Before you go for your appointment, ask your NDIS working team to help you write a list or draw pictures. You can include photos or brochures if you like. These will help you explain the things you do now and the things you would like to do in the future. Take these ideas to your appointment with you.
The money side of NDIS support
The NDIS will be paying for your reasonable and necessary disability support costs in the future. So they will need to know the costs of all the things that are a part of your daily life now. Some of these might* be:
- daily personal activities
- transport to help you participate in the community, social activities, shopping and daily life activities
- supported living accommodation and paying bills
- if you are living at home – planning breaks away from home to help you strengthen your social skills, independence and community access
- help with your health and wellbeing needs
- your workplace, volunteering or day program
- activities and exercise routines
- diet management – it is important for others to know how to keep the environment safe for you to help you continue to lose weight, maintain a healthy weight, or, if you have diabetes, to manage it well
- arranging and getting to appointments, eg doctors, dietician, psychologist, physiotherapist, speech therapist etc.
- fun stuff like meeting your friends or going to training with your sports team
- meeting your hobby group
- electronic support – diabetes management apps, exercise apps etc.
- someone to talk over any troubles with you, if you’re feeling bad
- aids and equipment.
* As understood by the PWSAA at the time of publication.
TIP: Before you go for your appointment ask your NDIS working team to help you prepare, or draw, a list showing the current costs of all your different support needs. Take the list of costs to your appointment.
The NDIS will prepare a plan that shows the amounts of money they will pay for all the different areas of support.
You will need to wait a while for the NDIA to agree on your plan. After that, people with a plan can choose who they want to help with their plan. The NDIS will arrange for a case worker (or your parents) to make the plan work well for you.
If you and your NDIS working team are not happy with your plan from the NDIS, you can say so.
If your needs change, you and your NDIS working team can request a review of your plan.
TIP: Always keep a copy of your plan.
The most valuable thing to remember is that your NDIS plan will help you maintain a healthy and happy life – your safety and wellbeing is important!
This guide has been prepared by members of the Prader-Willi Syndrome Association of Australia. Many of us are parents of people who have PWS. We have learnt and understand that great support enables great outcomes. That’s why we have prepared this guide for you. However, it is most important that you listen to those people who are living with you and working with you day to day, as they know you best of all – together you will build a great future!
- Choose your NDIS working team.
- Have a look at lists or drawings others have done that may help you when preparing your own. You can find ideas on the internet.
- With your NDIS working team, prepare lists or drawings before your appointments.
- Take a member of your team to NDIS appointments.
Like to know more?
There is a brochure about your First Plan on the NDIS website