Joint Standing Committee on the National Disability Insurance Scheme
Submission: NDIS Planning
My husband and I care of our 25-year-old son who has a range of disabilities and mental health issues and is quite a complex young man that requires 24/7 care. Our son has been accessing the NDIS since its inception in the ACT and in fact was one of the first rolled in.
Over the past 2 years we have experienced many problems with the NDIS planning process. Last year our request for a review of our sons NDIS plan was totally ignored. We did not receive any communication from the NDIS after many attempts from us to get in touch. I had submitted the required forms outlining the reasons for our review request accompanied by documentation from health professionals that are active in our son’s life. We still had heard nothing even after many phone calls had been made, lodgement of an official complaint using the NDIS complaints form and contacting the Ombudsman’s office for assistance.
It wasn’t until our son’s plan was almost out of funding, 6 weeks before the official end of the plan, that out of desperation I contacted the Office for Disability in the ACT. They were most helpful and were able to get us a new NDIS plan before the existing one expired enabling our son to continue with the continuity of care he had been receiving for the past 4 years.
The main issue with our son’s previous plan and sadly this new one is that the planner didn’t seem to understand the needs of someone with Autism who has an Intellectual disability who also suffers Generalised anxiety and Panic disorder as well as a Schizophrenia. We had provided reports from his Psychiatrist, GP, Occupational therapist, Social worker and Case manager that outlined clearly what his needs are, the impact of his disability and mental health issues on his everyday life and any progress that had been made from the previous year.
I had also requested that we see a draft plan before it was submitted for approval and was assured this would happen. I requested this as I have done for every new plan as a lot of information is provided in the planning meeting and seeing as though our son is so complex it is impossible to capture everything discussed. For the last two years this has not occurred and consequently things were missed in his plan (for example not enough funding to continue continuity of care for a 12 month period, no acknowledgement of funding for respite for us his parents, no funding for his Service dog (who has been funded for the 2 years previous), no acknowledgement that we requested to self-manage certain components of his plan etc. Each plan has come back with the entire plan being plan managed instead. In fact at our last planning meeting the planner entered and said to our son ‘how was school today’. Our son is 25 years of age! Clearly there was no preparation on the planner’s part before he entered the room.
In the beginning when our son was first rolled into the NDIS the planner took the time to get to know our son over several meetings, explained what her qualifications were, explained what we would be deemed as necessary supports, helped us to understand the process and what we could request and showed us a draft of the plan before it was submitted. Because of this approach we didn’t need to request a review of his plan for the first couple of years. This was an easy and pleasant process unlike the way planning meetings are now conducted.
For this most recent plan when I tried to contact the planner we again have been totally ignored even after we had outlined what I felt was missing and ask for some clarification and justification
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around some of the decisions that had been made. Our Case manager who was also present at the last planning meeting also tried to contact the planner but was ignored also.
Consequently, our son’s latest NDIS plan again doesn’t reflect the funding we were receiving last year nor what was outlined as being required therapy sessions from the Allied Health Professionals reports that we submitted at the time of the meeting.
I thought the NDIS was supposed to be inclusive that puts the participants needs first and includes them in the decision making. While this certainly happened in the beginning it most certainly doesn’t happen now. In fact, the whole process has put so much more pressure on us his parents as we now have to fight and justify everything all over again and pray that this time we won’t be ignored or have someone who is not qualified nor understands our issues making decisions about our lives.
In my mind the planner should be a scribe that gathers the evidence in an initial meeting not someone who writes the plan after only meeting the participant and family for an hour. The majority of planners don’t possess the necessary professional qualifications to make decisions that affect participants and families lives.
There also needs to be a formal process around viewing a new NDIS plan before it is approved. I honestly believe that the NDIS is boarding on a human rights issue here not allowing the participant to see the draft plan before it is submitted. After all the plan is about the participant who has the right to see it at any point when requested. It would also drastically reduce the amount of plans that are currently requesting reviews.
I also think that those working for the NDIS have a responsibility to answer participants and should be some form of formal protocol around this. It is absolutely despicable that as a public servant queries form participants are allowed to be totally ignored.
By not having appropriately qualified people writing up NDIS plans affects participants and their families/carers. It provides a new level of stress that the participants needs will not be met. In our case in this latest plan we have been denied respite which for us is a vital component of our caring responsibilities. Without respite we are more likely to go into crisis situations and hence rely on more services ultimately costing more.
Our son is now also limited in accessing the Allied Health Professionals he has been seeing for the past couple of years as the funding is insufficient to carry on with his weekly sessions and provide the reports the NDIS requires but seem to ignore. This puts our sons progress backwards and will now require more time to get back to where he was before this new plan, that is of course if our review request is not totally ignored as it was last year.
The other major impact this process places on us is our ability to work in our full time jobs. Both my husband and I are employed full time and the lack of funding for formal supports through the day means we are unable to go to work which just adds to the pressure we already live with. Thankfully both of us have understanding employers and provide us with flexible working conditions but I know this is not always the case.
I honestly believe the NDIS is one of the best reforms in decades but it has not been properly monitored in its delivery nor does it consider the actual needs of the participant anymore.
I am forever hopeful that some positive change will come from this inquiry.
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