Our NDIS plan: what I've learnt about tackling the first planning meeting
Julie Jones, author of “Have Wheelchair Will Travel” has recently taken the leap of faith entering into the NDIS to gain extra support for her son BJ, who lives with cerebral palsy. Julie shares her experience setting up their NDIS plan and provides some great advice for others needing to do the same.
When the implementation of the National Disability Insurance Scheme (NDIS)
was announced, I had mixed emotions, as did most individuals and families who would be affected by the change. There was some optimism that a gap in therapy and other services would finally be filled. But people were also sceptical and nervous about how the NDIS could deliver on the big promises.
As a family, we were fighting to get the best services for our 21-year-old son who lives with cerebral palsy. For years, we’ve struggled to get sufficient therapy services and have often been placed on waiting lists which had over a year’s wait. The NDIS promises
almost seemed too good to be true.
As the NDIS roll out has been staggered around the country we benefited from hearing the experiences of others who had already received their NDIS plan. Some reported fantastic results and others seemed bitterly disappointed. As my husband and I prepared for our meeting with an NDIS Local Area Co-ordinator (LAC) the enormity of the task ahead of us hit home. How would we express to another person, who would be meeting our son for the first time at the meeting, the complexities of caring for him? In an hour and half meeting, we would share the ins and outs of our daily life, the good and the bad. We also needed to emphasise the shortcomings we currently faced in therapy and respite services.
"...the enormity of the task ahead of us hit home. How would we express to another person, who would be meeting our son for the first time at the meeting, the complexities of caring for him?"
My husband and I attended meetings about the NDIS at various organisations and felt we had a good grasp of what to expect. The best assistance we received was from friends and acquaintances sharing their experiences. Though nervous about our impending meeting, we put together documentation to provide to our LAC. Preparing information for our NDIS planning meeting helped us prioritise our son’s needs and be clear in our approach for the meeting. We were supported on the day by my son’s service provider and their experience proved invaluable.
For those still navigating the process, we hope sharing what we learnt may help you.
Preparing for your NDIS planning meeting
It’s important to remember the National Disability Insurance Scheme is person-based. Your NDIS plan is about the person’s goals and expected outcomes.
Before the meeting, keep notes about your day-to-day schedule. You’ll find you do many things without thinking about them and it’s important to include the details in your meeting. Keep a record of what you use and spend on items like continence aids.
Prepare a document to give to the LAC at your NDIS planning meeting, including photos. Pictures will give the planner who’s making the decisions a better insight into the life of the person applying for NDIS funding. We included photos of our son enjoying activities in the community to show his social personality and his need for support to access the community without his family.
If you are applying for funding for house, bathroom or car modifications, submit photos which clearly display why the current situation isn’t working. If you can’t get a wheelchair into the bathroom, show it with photos.
Think beyond the basic items of equipment and look to what would enhance your life or the life of the person you are caring for. Some items we’ve seen covered by NDIS funding are beach wheelchairs, TrailRiders, shower chairs, travel commodes, pool hoists, short term accommodation (respite) and support worker hours to access the community. If applying for these items, be specific as to what the goal is. For example, if you live near the beach, or if you holiday near the beach, your goal may be to access the beach regularly with your family or friends.
Having the equipment would allow you to be included. Support worker assistance may be necessary for you to build independence from your family and give you the opportunity to socialise with your peers. Everyone’s needs and goals will vary but it’s important to explain why there’s a need and what the outcome will be if it’s met. For our son, we requested one on one support so he could learn independence and work on communication goals.
Wording needs to be person based. We were careful not to refer to respite as something for us as parents. We referred to it as a place where our son could have time to socialise with his peers, learn independent living skills and accept assistance from people outside his family.
During your NDIS planning meeting
The LAC will ask specific questions and record your answers in their own words. I found it helpful to ask the LAC to repeat back my answers to see if she had understood and emphasised the information I felt was most important. It gave me a chance to correct any errors or misunderstandings.
After the meeting, I asked the LAC if she would email us a copy of the NDIS plan before it was submitted to the planner. She agreed but this is at the discretion of the LAC.
We felt we were fair with what we requested but we didn’t receive all we had hoped to. However, some of the core funding our son received in his NDIS plan can be used in a flexible way. We didn’t get one-to-one support for him and this was our number one priority. We have managed to use his flexible funding for three days a week one-to-one support which is exciting. This gives him the ability to pursue his own interests with support, instead of being restricted to a group program with little choice.
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We are only four months into our son’s NDIS plan so it’s all still new and playing out. What we have found is that there’s currently a shortage of trained disability support workers. The NDIS shake-up has resulted in not enough staff to fulfill many of the hours which have been funded. Hopefully this will turn around soon but it’s frustrating to have funding available and not be able to get suitable staff. We are conscious that when we finish this year’s plan we will lose our son’s current level of NDIS funding if we haven’t used it.
Happily, it seems that access to therapy will be much easier and from what we’ve experienced so far, perhaps there will be no wait time.
The NDIS is such an overhaul of the system, it’s natural there will be teething problems, but hopefully people living with a disability will ultimately have more choice and support.
Bupa Therapy is a new centre which has been designed to do just that, made possible by the NDIS. Click here to view the Bupa Therapy website.
Up next: Giving power to people with disability.
To read more about Julie's adventures travelling with her family including son BJ, visit her blog, Have Wheelchair Will Travel.