*** Down Syndrome Australia NDIS Survey – the survey has been extended for another week!***
Down Syndrome Australia needs your help to advocate for a better NDIS experience for you and for other people with Down syndrome joining the NDIS in future.
DSA is involved in ongoing advocacy regarding the NDIS. DSWA and other states pass on concerns from people with Down syndrome and their families, and our national CEO makes sure these issues are discussed at meetings with the NDIA. BUT, we need YOUR individual input.
Please take a little time to do the survey – your input will really help make a difference.
And yes, it is for people in WA NDIS too. Ignore the closing date. https://www.surveymonkey.com/r/NDIS-DSA
NDIS in WA Latest News
August 2018 – Transfer or Transition – What’s the difference?
Are you confused by the terminology being used to describe moving into the NDIS? Well, you’re not alone. And it isn’t surprising either, with people in WA having been in three different disability schemes over the last couple of years and now moving towards one national scheme.
In our last NDIS & Me e-news in April, we explained how this was going to happen – as far as we knew at the time. But quite a lot has been happening since then, so here’s an update.
Here is the current schedule that shows when people in different areas will move into the NDIS: http://www.disability.wa.gov.au/Global/Publications/NDIS/Schedule/NDIS-transition-schedule-Western-Australia.pdf
If you are already in the NDIS (the national scheme), you don’t need to be concerned with this. However, we’ve found that quite a lot of people weren’t sure which scheme they were in, due to confusing messages from government. So if you aren’t sure which scheme you are with, or when you will be moving into the national scheme, check out the schedule. It is set out by local government areas, so look up your shire/council and you will see the date when ‘transfer’ or ‘transition’ is happening.
Transfer or Transition?
People who have been in a WA NDIS area until now will be moving to the NDIS this year. This is called ‘transfer’. Look at the first column (in purple) on the schedule to see if your local government area is included.
People who are still in the ‘old’ DSC system, that is you haven’t been in NDIS or WA NDIS, will move into the NDIS over the next couple of years. This is called ‘transition’. The last local government areas to transition are in green on the schedule, and begin to transition from July 2019. *Apart from Christmas Island and Cocos (Keeling) Islands who don’t transition until mid 2020.
What’s involved in transferring?
If you have been in a WA NDIS area and will be transferring to NDIS, here is what should happen. NDIS will contact you to invite you to a ‘transfer meeting’. The aim of this meeting is to involve you in the process of translating your WA NDIS plan into an national NDIS plan. That is, the people at the meeting will show you how the content of your WA plan will be put into the national plan. This is because:
- the plans are set out differently,
- use different wording to describe supports,
- you can potentially get some different supports under NDIS, and
- you can manage and use the funding differently too.
This may sound like a lot to take in, but some people who have had transfer meetings so far say it was a good chance to ask for different and additional supports in the plan. For example, one parent said that they hadn’t been able to get support in their son’s WA NDIS plan to help him with moving from school to employment. They asked for this at their transfer meeting, and got extra funds for this.
Things to think about before the transfer meeting:
- When you are contacted to go to a transfer meeting, make sure it is at a time that suits you. If the date and time they suggest doesn’t work for you, say so and let them know what would work.
- Do some planning now. Look through the current WA plan and think about whether it is adequate. Does it really meet your/your child’s needs for the coming year? What changes or additions would you/your family member like and why? You can use the DSWA Steps to Plan workbook to help you think about this.
- Will you take someone with you? As with all meetings, you have the right to take a friend or advocate with you.
What’s involved in transitioning to NDIS?
People in the areas due to transition from 1 July 2018 have begun to get phone calls from NDIS to start the process. People with Down syndrome already linked with DSC/LAC should not have to go through any new processes to be eligible. You will be considered to be a “defined participant” because you were eligible for state disability services. They will probably check whether an adult with Down syndrome or a parent/family carer will be the contact person.
You may also get a phone call asking a lot of questions about how much and what kind of support the person needs in daily life. The calls can come out of the blue and take some time, so if the timing is not convenient, tell them you want to take the call at a better time for you. Also, be aware that the questions are part of the process to work out how much support a person needs, so think carefully about the answers so that they get a true picture of the support needed. For example, your family member may shower independently, but do they sometimes need help with any aspect of it? If they run out of soap or shampoo, do they tell you? You need to consider the details and the role you play in their support.
At this stage, we haven’t heard from many people about how the next steps of the transition process are happening, but will keep you posted. If you are transitioning, we’d love to hear about how it went, and do let us know if you experience problems or need help or information.
New babies with Down syndrome – what’s the process?
Are you a parent wondering how to get an NDIS plan for your new baby with Down syndrome? In WA, we are still waiting for the Early Childhood Early Intervention (ECEI) pathway into NDIS that exists in other states. Until we do, DSWA is discussing with NDIS how they can streamline the process. Please contact us at the DSWA office if you’re unsure what to do or not having success in engaging with Disability Services or NDIS and we’ll help you sort it out.
Some of the ways the national NDIS is different
We mentioned earlier that you may be able to get different and additional supports in a national NDIS plan. Here are some that you may like to think about:
Training for parents/carers
You can ask for funding in your family member’s plan to enable you to do some training to help you in your role as a parent or family carer. Please note, this is not training for support workers. Example: Some parents have received funding to do Key Word Sign or other communication courses. People have been asking for a general amount for training e.g. $500 for the year, so that they have the funds when courses become available.
Down Syndrome WA can also offer individual or small group training to help you in your role – let us know what you need and we can provide training or refer you to another specialist provider.
Assistive Technology (AT)
AT in NDIS plans covers equipment and home or vehicle modifications. People with Down syndrome may need various pieces of equipment, depending on their age and individual needs. You may need to get a therapy assessment and quote for some equipment, but you may also be able to get an amount in the plan to spend on other items – what the NDIS calls ‘low risk AT’. These are things that you can safely use without any risk to the person.
Here are some examples of things that you could buy from low risk AT funds:
- Apps, devices (e.g.an iWatch) and timers to help people be more independent – for example a waterproof timer to remind when to get out of the shower.
- Elastic shoelaces
- Electric toothbrush
- ModiBodi undies to help girls and women better cope with their periods
- Cutlery, scissors, electric can and jar openers for people with low muscle tone/small hands
- Noise cancelling headphones – great for making noisy environments more bearable
- Video monitoring system and other security devices
Support to move from school to employment
The NDIS offers specific funding for students in upper high school years to help get ready for employment (of all kinds, including designing your own micro-business). You can have a goal in your plan that relates to getting ready to work, and it’s on top of other supports, such as the work experience that school may organise.
Managing your NDIS plan and using your funding
There are different ways of managing an NDIS plan, and greater flexibility in how you use the funding. We’ve put together an info sheet on the different options to manage your plan. It’s on the DSWA website http://www.dsawa.asn.au/information/ndis/
NEW – NDIS Guide to Self-management
This has just been published and looks really good. It includes practical info and some great examples too.
Excellent video resource!
There’s a great video from the recent Peer Connect conference in Perth – a must-watch to help you with understanding and getting the best from the NDIS.
It features Sam Paior from The Growing space in SA talking in plain language about what you can and can’t use NDIS funds for. Sam has years of experience supporting people to get the best from the NDIS as well as personal experience of the NDIS as a parent.
We highly recommend watching it.
DSWA pre-planning and self-management resources
Steps to Plan Workbook
We have updated the DSWA Steps to Plan Workbook and you can download it free from our website. It is available in PDF or in Word. It is designed to help you start from scratch in getting plan ready. You can write your information in the workbook, and develop, step-by-step, the goals you want in your NDIS plan. This means you have all your information ready when you go for your planning meeting or plan review meeting.
Life Stage Fact Sheets
We’ve also written some handy downloadable fact sheets for people with Down syndrome at different life stages. These give you an idea of the kinds of goals and supports that might be seen as appropriate and reasonable for a person with Down syndrome at a certain stage of life. Of course, they are just examples, but they are useful for generating ideas and wording your goals.
We have put new resources as well as links to other useful resources up on our website including management options, transport, core supports, capacity building supports and planning templates.
Here’s the link: http://www.dsawa.asn.au/information/ndis/
DSWA NDIS Workshops
Throughout 2017 and early 2018, DSWA staff have been running NDIS workshops on pre-planning, self-management and “Ask Us Anything”.
We also recently presented on pre-planning at a very successful NDIS Expo in Albany, along with Carers WA and WA Individualised Services.
We will be looking at running a couple of evening sessions over the next few months.
Places to find NDIS Information
Here are a few websites and social media groups and pages we recommend for finding out more about the NDIS. It’s a good idea to join or follow social media and/or sign up to email updates if you want to keep a close eye on what is happening, ask questions about the NDIS and discuss issues with others. Here are some you may find useful.
The NDIS website itself has lots of information about the scheme, for people with disability, for families/carers and for providers and communities. https://www.ndis.gov.au/index.html
The official Facebook page for the National Disability Insurance Scheme, with 80k followers, posts every day with info about the scheme and people’s stories. The new CEO of the NDIA has begun posting regularly on how the scheme is going – a great new initiative.
The weekly Q & A is always worth looking at for answers to frequently asked questions during the week. https://www.facebook.com/NDISAus/
We really like Disability Loop; there’s so much information and some great resources, some written and some videos, and they are all produced in plain language so they are easier to understand. Check it out here: https://www.disabilityloop.org.au/resources.html
Here is the Disability Loop Facebook page: https://www.facebook.com/disabilityloop
|The Growing Space
Sam Paior is an independent Support Coordinator in South Australia and also a parent of a son with Down syndrome. While some information on her website is focused on SA, most of it is relevant across the country. She knows from experience what the key questions and issues are and provides very practical, easy to understand information, advice and tips in her blogs and Facebook page. http://www.thegrowingspace.com.au
NDIS and Me
A closed* Facebook group with over 500 members, for Australians with Down syndrome and their families. The group, which is run by DSWA, aims to help its members to get ready and get the best outcomes they can from the NDIS. There is discussion about what is happening in all states so this can be a useful way of sharing questions and experiences within the national and local Down syndrome community. We will post this eNews to NDIS and Me and to the DSWA Support Network group. http://www.facebook.com/groups/NDISandMe/
This open Facebook page is run by DSC and states that it is “Your official source of information about the WA NDIS”. https://www.facebook.com/TheWANDIS/
NDIS in WA Peer Support
A closed* Facebook group, with over 1400 members, for people with disability and families living in WA in either NDIS or WA NDIS areas (but you can also join if you are in other areas in WA). A useful group for information and discussion. https://www.facebook.com/groups/ndisinwa/
*You need to request to join closed groups. The admins will check that you are eligible before allowing you in.
An open Facebook page with over 700 followers, run by disabled people and family members that says: We want the WA State Government to guarantee that West Australians with disability will not be worse off than other Australians under a WA NDIS. This is useful for the latest information about what is happening, lively and critical discussion and analysis of events, policy, scheme design as well as information on advocacy and activist events for the #NoDisadvantage Campaign. https://www.facebook.com/nodisadvantage/
|Other useful social media
There are lots of Facebook groups and pages on the NDIS and WA NDIS. If there are any that you find useful, please let us know.
|As with all online content, please be aware that information may not be correct, so please do check before making any decisions or taking any action based on the information.|