Challenges with NDIS planning processes and impact on family support | External submission

Submission to the Joint Standing Committee on the National Disability Insurance Scheme.

Subject: NDIS Planning

I am responding to this Inquiry as the plan nominee for both my son and my sister. We self-manage both plans.

Once an adequate plan is in place, the NDIS is wonderful and I love everything about it. However, every time I have to engage with the NDIS at a time of review or change of circumstance, it is a nightmare! Nothing works the way it is supposed to. I deal with unknown, faceless, nameless people that I often can’t contact and am at the mercy of someone contacting me when it suits them. We have not dealt with the same person twice. The LAC’s have changed numerous times and I don’t know who the Planners have been. The timeframes are too long and we end up on the verge of expired plans or end up with a gap between plans and this then creates more stress and hassle for us and it puts into jeopardy everything we have worked so hard to put in place.

My sister transitioned over from the NSW state-based funding arrangement in 2016 and my son accessed the Scheme as a new participant in 2017.

My overview of the planning experience is that it is fraught with misinformation, missing information, gaps in plans, poor coordination of the process, timeframes that blow out, inexperienced people at every point – LAC’s, Team Leaders, Planners, Delegates etc and too many steps and too many people involved and the participant and their supporters are very much on the outside looking in, with no control over the process, the people or the outcome. Choice and control is an allusion and a furphy in the context of planning. We wait, and wait, and wait….

I will address the terms of reference that are relevant to our experience.

the experience, expertise and qualifications of planners; It is impossible to ascertain these things about a Planner as they don’t provide any information about themselves when you meet with them face to face. We are not privy to their phone number or email address, so have no means of contact. As they stick pretty much to completing some unknown and unseen document on a laptop, they stick pretty much to script and give little about themselves and their knowledge base away. It is only if they ask silly or obviously ignorant questions that you can tell they actually have little experience in the area of disability.
the ongoing training and professional development of planners; I don’t know what training or development planner have, other than to say in my experience, they need much more of it.

This is a very important element, in order to improve the outcome for participants, but I would really like to know what training is currently available to the planners? I have not been able to ascertain what, if any, training the people I have had contact with, have received. What are they trained in? What topics are covered? What training is available that might assist a Planner understand the support needs of a

person with intellectual disability. What do they know about the importance of relationship building, of connecting to community, of keeping informal support networks sustainable, of the importance of certainty for everyone involved?

the overall number of planners relative to the demand for plans; I don’t know the facts but anecdotally there are not enough Planners as everyone I’ve spoken to has had to wait months for review of all kinds: immediate reviews when plans are missing something or are inadequate; change of circumstance reviews and review for plans nearing their end date. None of them happen in a timely or known timeframe. We just wait, and wait and wait and hope for the best. This is completely unacceptable as it can have such devastating consequences, like a great worker, who we spent nearly 18mths to find, can’t wait around while we wait for a new plan which then may not have the funding in it that we need! They need work, and therefore, pick up work elsewhere and are then lost to us! This shouldn’t happen.

participant involvement in planning processes and the efficacy of

introducing draft plans;

I always put together a lot of information to be accessed by the LAC or Planner, but have no idea if any of it is ever referred to. In the most recent circumstance of my sons scheduled review, all of his previous core supports were absent in his new plan, even though the need for them had been very clearly articulated in the report from the OT, the Support Coordinator, his support worker and myself. He cannot achieve any of his goals without adequate support. Do any of these documents get read??? I have no way of knowing. When I questioned how it was possible that my son’s new plan arrived with no core supports, I was told by a Team Leader in the Uniting office, that it looked like the LAC had missed adding it to the information that she sent to the Planner. In my view, everyone who has input into building a person’s plan, must have access to all the documents provided by participants and their supporters, otherwise one person making a mistake or missing some vital information, can have a profound impact on the final plan. We had to request an immediate ‘review of a reviewable decision’ which took months to occur! Even though I had been told an error had been made, we still had to go through the whole review process which was convoluted and took way too long. We are still awaiting the outcome and are on the verge of losing our worker…. again, because of something totally outside of our control and caused by an inexperienced LAC. What are the consequences for her?? I believe the only way to get beyond this mess is for there to be one person who manages the review and plan creation. We meet with them, we give them the relevant documents, they review them, they communicate with us if they need more information or clarification and then they build the plan and fund it and then they notify us that the plan is drafted up and give us a copy to look at and comment on. They then finalise the process and work with us to ensure we understand their decision-making processes and that we are then in a good position to put the plan into action.

the incidence, severity and impact of plan gaps; There was a three month gap between my sisters first and second plans. This created such a drama for us and meant we had to use our own funds to pay for

support for that period as we couldn’t access any NDIS funding. We then had to create manual claims for the gap period and wait months to be reimbursed. Again, I had no way of contacting anyone who was supposedly ‘working’ on fixing the problem. We were told many incorrect things by the LAC…the date of the first plan will be extended to the beginning date of the second plan, so that we could make a claim…this took weeks of me chasing the LAC to see why it wasn’t happening. I kept checking the portal every day to see if the changes had been made. Eventually, she told me “oh, they can’t do that, you will have to make a manual claim”. It is so stressful when these things happen and the information we are given is generally incorrect. I now have no faith in anything an LAC tells me (because of this and numerous other incidents with a number of other LACs).

the reassessment process, including the incidence and impact of funding changes; We go into every review with great trepidation as there is so much hanging on the plan being correct and the funding being adequate. When the NDIS commenced in NSW my sister had been receiving funding via the State system for a number of years and we had her well supported, living independently with drop in support and doing really well. The transition over to the NDIS was smooth, her first plan was good and her funding was adequate. With her second plan, the process was terrible. Firstly, we had a three month gap between plans and then when her plan arrived, her funding had been halved. There was no way we could manage her support with half the funds. It jeopardised everything we had spent years building up. I rang everyone I could get hold of and eventually spoke to a planner who did increase the funds a bit, so that it was three quarters of the original funds but it took a lot of work on my behalf to justify the increase and it has been very difficult to manage since.

One of the Planners I spoke to during this process told me I would have to provide evidence from a GP that my 85yr old mother and my 90yr old father were no longer able to provide the level of informal support they had previously provided to support my sister to live in her own home! I couldn’t believe what I was hearing! The ages of my parents alone should have been adequate evidence that they could no longer provide support to my sister, and they shouldn’t be expected to…it was a very stressful and difficult time for all of us and I couldn’t believe what was happening.

As mentioned previously, my son’s new plan arrived with no core funding. This is his third plan and he has had adequate core funds previously to support him in his activities of daily living and social and community participation. This time….nothing! No explanation, no nothing. And then to find out it was probably a mistake by the LAC which led to this, is so frustrating. We then were asked to provide all the previous information again and additional information as well. More work for us and more expense i.e. another report from the OT reiterating her previous recommendations. Why they couldn’t just go back and look at the reports that had been submitted at the time of review remains a mystery to me. We are now in the process of a Review of a reviewable decision. More waiting and again, on the verge of losing existing supports.

the review process and means to streamline it; As mentioned at Point 4, I believe the only way to get beyond this mess is for there to be one person who manages the review and plan creation. We meet with them,

we give them our documents, they review them, they communicate with us if they need more information or clarification and then they build the plan and fund it and then they notify us that the plan is drafted up and give us a copy to look at and comment on. They then finalise the process and work with us to ensure we understand their decision-making processes and that we are then in a good position to put the plan into action.

the circumstances in which plans could be automatically rolled-over; I think this would be a great idea for older participants whose lives are pretty stable and little is going to change in the foreseeable future. If something does change unexpectedly, there is always the option of a ‘change of circumstance’ review. If a person has adequate funding, no changes in circumstances on the horizon and are happy with their goals and the supports they have in place, then plans could be automatically rolled-over.

The NDIS would contact the participant/nominee in a suitable and known timeframe prior to the end of a plan and see if a roll-over of the current plan and funding is desirable. It would then be up to the participant to say yes, that’s fine or no, we want to change some goals or something and a review is then required.

the circumstances in which longer plans could be introduced; Longer plans would be very welcomed as long as they are adequately funded. I requested a 2-year plan for my sister, but when the plan arrived and the funding had been halved, it placed us in a totally invidious position. I would like to see plans of between 2-5years as that would work for us, but again, they have to be adequately funded. Review points are time consuming, frustrating and stressful, so the fewer we have to endure the better.
any other related matters. I eagerly await the day when a LAC or Planner contacts me in a timely way to plan for a review meeting and they give me a timeframe by which a review meeting will be held, a draft plan will be sent to me to review, a 2nd meeting is held to go over the draft plan if there is anything in contention and then a date by which the new plan will be available is identified. No gap between plans ever happens and nothing comes as a terrible shock ever again.

Yours sincerely