Knowing that we’ve just been through the NDIS process (National Disability Insurance Scheme) a few of you have sent me messages asking if I have any tips for your upcoming meetings. We received BJ’s plan just before we went away and it was only the week before Christmas that it became clear what his plan will and won’t cover. Before I knew the details, I couldn’t really write about the experience because we were still in limbo. We got through the process and although I’m far from an expert on the NDIS, I did learn a thing or two and I’m happy to share in the hope of helping others. Even if you are not in Australia some of the tips may be helpful with IEP (Individual Educational Plan) meetings or for funding applications.
Hubby and I both attended meetings about the NDIS at different organisations. Lots of notes were taken and I felt we were well prepared. There was quite a bit of time between these educational sessions and our call to say BJ qualified for the NDIS. It was then I started to hear rumblings. Other parents started sharing their experiences, I heard of people paying planners to go to meetings and help prepare NDIS documents. I suddenly felt we were under prepared and panic set in. I felt silly that I hadn’t done more to prepare. To be honest, I grappled with the idea of asking for things that had previously been beyond the realm of possibility.
I then received some great help by way of a friend sharing her daughter’s planning document, a daunting 30 pages. I had phone calls with a couple of other friends who’d been through the process and some support from an Occupational Therapist friend. It was incredibly helpful having so many people rallying to give us confidence before our meeting. Hubby and I spent the best part of a weekend putting together a document showing BJ’s interests, needs and areas where we felt he needed greater support. We kept in mind that the Local Area coordinator (LAC) that would meet our family would be passing on information to another person who would make decisions and this person, with all the power, wouldn’t be meeting BJ. Therefore, we felt it was important to add photos and information that would highlight his personality and needs. I’m not sure if the document helped the LAC or the planner but even if it didn’t, it reinforced our ideas before the meeting. It focused us and made us look at BJ’s needs in a black and white manner.
Years ago, we had a meeting with the principal of BJ’s primary school before he was enrolled. We sat down and he said, “Normally we speak about our children in the most positive light. For the purposes of funding you need to tell it how it is. You need to share the worst-case scenarios and be honest.” I found it difficult and it left me low for a good week after it. I experienced this again when it came to a post-school funding meeting but I remembered the advice and knew what had to be done. The NDIS requires the same honesty. All those things that you would normally hide from outsiders, you need to mention. Don’t sugar coat the facts. It’s not a great feeling talking about your loved one in less than glowing terms but you are working towards a better outcome for the whole family so it’s worth it. It’s a grin and bear it moment but remember, it’s just a moment.
I was given much advice regarding language. One was around the word ‘respite’ and not to use it as the NDIS is about the person with the disability not the family. However, the other piece of advice I was given is that the NDIA works on an insurance model, invest now and save in the future. We discussed BJ going to respite as a place where he could socialise without us, make friendships and most importantly learn to accept help from others. We also said that we felt this would help him gain skills which would assist with his independence outside of the home.
Even around our therapy goals we emphasised that communication skills would lead to independence.
As much as the plan is about BJ and his needs we were told to make sure we communicated how unsustainable it is for our family not to have more assistance with the sleep pattern (or lack of it) that BJ has. This is where we hoped the insurance model would favour us. If we can’t maintain support of BJ at home it will obviously cost the ‘system’ more to have him in housing. We really highlighted the lack of sleep and how it impacts on the whole family but we also made sure the LAC understood we’ve been proactive in finding solutions ie sleep studies, medication etc.
I was surprised to see so many photos in our friend’s daughter’s document. Then as I looked through, I could see how they provided a good snapshot of her daughter’s life, relationships and interests. Assuming, due to workload, a planner doesn’t have time to read every word of a document, the photos paint a good picture at a glance.
Photos help to illustrate difficulties with current equipment and any housing problems ie inaccessible bathrooms.
We were fortunate to be starting a block of therapy with a speech pathologist. I asked her if she could provide a document which stated how many hours of her time she felt it would take to complete the current goals we were working on. She happily gave me that information which I submitted to the LAC.
We identified the need for a new manual chair for BJ and provided an updated quote on BJ’s current chair.
We also obtained documents from Enable on all repairs and equipment they have supplied. Enable will happily send an email with this information.
Our house is fully accessible but if you are applying for modifications I suggest using photos to illustrate the difficulties with the current situation. Take good clear photos showing why access is difficult or impossible. Be clear on how this impacts on the person with the disability and any family members or carers assisting.
Our meeting lasted 2 hours with the LAC who typed all the information into the computer throughout. We were fortunate to have the support of BJ’s day program managers who had been through many NDIS meetings so were familiar with the process. It was a big advantage because they know our family and the areas we struggle with (namely lack of sleep) and lack of support. Their expertise was invaluable, so if you can have someone from an organisation you use assist you at the meeting, I’d recommend it. We didn’t pay for this assistance.
During the meeting, I asked the LAC to repeat back what I’d already answered. Because she was paraphrasing our answers to type into the computer I felt it was important that the information didn’t lose its emphasis. It was a good way to see if she was getting the importance of certain points. For example, when I had her read one reply back she had left out information about BJ’s insomnia. This was highly relevant to BJ’s need to have a support worker take him out but it wasn’t included until she told me what she had written and I expressed my displeasure at it not being included.
In the meeting we were told by the LAC that their document must use positive language so don’t frame your answers negatively. You can say the shortcomings you currently have but add the positive goal you have in mind and the outcome you want to achieve. For example we said that we felt that people currently assume choices for BJ at his day program. Our goal was for him to be able to make his own choices making him independent and avoiding frustration. This would give him good self-esteem and to achieve this goal he’d need access to speech therapy services and a 1:1 support worker to focus on these skills with him in the community, as it wasn’t possible for him to get the time in a group setting.
Be aware that the LAC or planner may come back and ask for proof of information you provide. For example, we were asked for proof of the hours BJ attends respite. The respite house manager was happy to provide it.
Don’t go off on tangents but there is no problem with peppering the conversations with a bit of additional information. People don’t understand your life, so giving an example is fine if it will give them a better idea of the challenges. For example, when we tell people BJ can be awake from 1am I don’t think they understand how disturbing this is. Some imagine he just gets up and the rest of us sleep. We spelt it out for the planner, explaining that once he is awake he needs to be taken to the toilet regularly, we need to operate the remote control for him to watch TV, to change what’s on and generally be awake with him. Dozing is the most that happens once he is up. Spell it out to the LAC, don’t assume they’ll know or understand.
We asked that the meeting be held at BJ’s day program. This allowed the LAC to put a personality to the applicant and to meet him. We don’t like speaking negatively in front of BJ so once she’d seen him for a while we asked that he go back to his day program. This way we could say what we needed without a negative impact on BJ.
At the end of the meeting we were asked to set up a MyGov account for BJ and given an access code to the portal where the funding would appear.
After the meeting I requested a copy of the document the LAC was going to submit to the planner prior to her submitting it. She agreed and within a day I had the document. I asked for a couple of changes but generally I was happy.
Be nice, the LAC is doing a job and is your mouthpiece to the planner who makes the decisions. Being kind will hopefully make them keener to advocate for you or your child.
It was a week between our meeting with the LAC and receiving our plan. In that week, we had a couple of phone calls from the LAC to clarify points.
The LAC went over the plan on the phone with me and talked me through the funding I could see in the portal. We received the plan in the mail a few days after that.
I was disappointed when I received the package as there was no 1:1 assistance as requested. We had requested 3 days a week 1:1 in the hope BJ would be able to pursue some individual interests. The main aim behind having 1:1 assistance is to give BJ the opportunity to work intensively on communication goals when out in the community.
The funding is broken up into sections and the Core Funding is flexible in the way it’s used. For example, we were allocated $35,000 in personal care assistance however, we didn’t receive the 1:1 assistance we think BJ needs. The personal care assistance is flexible which means it can be put towards other things if not used for personal care.
This flexibility allows us to prioritise where the money is spent. With communication as our highest priority next year, BJ’s day program worked out that we can in fact afford 1:1 assistance 3 days a week. This of course is at the cost of personal care but that’s fine with me.
BJ also received 48 days short term accommodation (respite). This is also flexible in that we can use it for outings for BJ. So, we may not use all of that on overnight respite but we might use it for BJ to go out for a day on a weekend with a support worker. If I’m at a conference we can use it for assistance in the afternoons until Hubby is home.
Prepare a document to give to the LAC at the meeting. Other people have told us that their LAC wanted everything submitted electronically but the LAC at our meeting happily took paperwork.
Be clear about your top goals and express this information.
Let the LAC know the outcome you hope to achieve with the additional therapy or support you request.
Get documentation to support requests. Supporting documentation regarding equipment, estimates for time required for therapy goals and a list of existing equipment.
If you receive a plan which isn’t sufficient, remember you can ask for a review or appeal. We know people who have doubled the funding from their initial poor plan.
If your loved one cannot help with the planning process, think about their interests, how these can be explored and what will enhance their life and help the whole family.
Be realistic, the NDIS is relatively new. It’s a major overhaul of the system and everyone is learning so it’s not perfect.
Aim high but don’t be greedy. Definitely apply for what you need but this program won’t be sustainable if people are greedy. Don’t ask for equipment you really don’t need. Apply for the things that will truly make a big difference in you or your child’s life.
WHAT WE PUT IN THE DOCUMENT
We used the document our friend shared as a bit of a template. We used the headings as prompts for the information we shared about BJ. Here are the headings –
My daily life
Weekly schedule and gaps in support
Things I need help with
What my health is like
My goals – broken up as What I want to achieve, How I’ll achieve, Supports that will help achieve and what’s stopping me from achieving this.
I have no idea if the document made any difference or impact on our outcome. As I mentioned at the beginning, going through the process of producing it really helped us focus on BJ’s goals and made us more confident going into the meeting.
I’d like to thank those that were so generous in sharing information with us. You know who you are and your calls, emails and chats were much appreciated. I found this a stressful process but maybe that was in part because our meeting was right before Christmas and our trip away. I still think it is a lot for families to process but hopefully some of this information will help you through the NDIS maze.
If you’ve been through the NDIS meeting, I’d love to hear your tips to help others.