Summary of Submission for Joint Inquiry on NDIS Planning
Dear Madam/Sir
We have a 29-year-old daughter who has severe intellectual disability with uncontrolled epilepsy and major mobility issues. She is dependent for all activities of daily living. Our NDIS plan started in 2016 December. Before NDIS we were availing support services through ADHC.
Let us say at the outset that we are happy with the introduction of National Disability Insurance Scheme. Our disabled daughter’s life and our as carers’ lives are better, thanks to NDIS. We also appreciate the fact that it will take few more years for the Scheme to work effectively for the clients. This submission is our effort to help improve the working of the scheme.
We would like to address most of the items included in the terms of reference of The Inquiry as we have both good and bad experience on those points over last 3 years.
We have commented on namely
a. the experience, expertise and qualifications of planners; b. the ability of planners to understand and address complex needs; c. the ongoing training and professional development of planners; d. participant involvement in planning processes and the efficacy of introducing draft plans;
e. the incidence, severity and impact of plan gaps; f. the reassessment process, including the incidence and impact of funding changes;
g. the review process and means to streamline it; h. the circumstances in which plans could be automatically rolled-over; i. the circumstances in which longer plans could be introduced; j. any other related matters. We hope our submission is accepted by The Committee and helps in improving implementation, performance and governance of the NDIS.
We are more than happy to provide further details if required.
Sincerely
Main Submission
- Experience, expertise and qualifications of planners; ability of planners to understand and address complex needs; ongoing training and professional development of planners
We have a 29 year old daughter who has severe intellectual disability with uncontrolled epilepsy and major mobility issues. Our NDIS plan started in 2016. After a year, in 2017 our plan budget was reduced by 25% without any explanation. We restructured our services accordingly to fit within the new plan and self managed that plan, leaving aside approximately 2 weeks of expenses for a rainy day - as my daughter’s, my wife’s and my health is fast deteriorating - we managed to spend 99%(CORE budget)of our plan budget with meticulous planning and diligent coordination throughout in 2018.
In early December 2018 after the review meeting our plan was further cut by 30%. The explanation given to us was that we had NOT spent all our funds which was completely wrong. The planning meeting took place on 19th December 2018. Till then invoices till end of October 2018 were paid. We showed our service plans for November, December 2018 and January 2019 till the end of the plan period to the planners. We requested to extrapolate the actual expenses from end-of-October till end of January but to no avail. During the planning meeting the planners kept telling us – at least 10 to 15 times – that we will get ‘necessary and reasonable funding’. We got a phone call on Friday the 18th January at around 4.30 pm telling us that our plan is approved and would be loaded on the system overnight. They would not tell us what the funding amount was. When we checked, there was 30% cut in the core funding. Not only there was reduced funding, but the services we had booked till the current plan review date were to be paid through the new reduced plan. We tried to contact NDIS office on Monday however could not talk to the planners. We were advised to submit a plan review request in. We promptly submitted a review request in on around 18th of December. Over next four months till 10th of April we must have made hundreds of phone calls and emails to NDIS office regarding the progress of the plan review request. We also questioned why our daughter’s plan was reduced and whether we could submit more documentation proof that to get our previous plan funding reinstated. We submitted various documentation and spreadsheets about how we were utilising our funding and why we would need more funds to support our daughter. We were getting one stock standard answer that NDIS office is looking into the review request and nobody knew what that meant. Finally, out of exasperation and frustration we contacted the office of federal minister and requested him to interfere and give us ‘necessary and reasonable’ plan funding. In the mean time we had also contacted our local MP’s office without any success. After various phone calls and emails with the office of the Federal minister for Disabilities, within a week our plan was approved to our satisfaction. The new planner who approved the plan was very apologetic on behalf of the earlier planners and NDIS overall. There is no possibility for our daughter to improve in medical sense. She is aging, we as parents and carers are aging and all of us are suffering from deteriorating health issues.
A well-trained planner/s with sense of accountability and transparency, empathy, understanding of complex disabilities and surrounding support framework could have avoided the unnecessary stress and anxiety over a long period of four months for us. And all this is in addition to looking after our disabled daughter. It would have definitely saved NDIA substantial costs and negative press. We wonder what must be happening to the disabled clients and their carers who do not have skills and experience of financial management, planning and coordination.
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- Participant involvement in planning processes and the efficacy of introducing draft plans; the incidence, severity and impact of plan gaps; the reassessment process, including the incidence and impact of funding changes;
Participant’s involvement in planning process not only makes the process transparent but also gives the client a sense of ownership of that plan. The interaction between the planner and client helps establish the trust between the two, it helps minimise the sense of ‘us and them’. There can be an exchange of information where client could be given pointers to run the plan more effectively and planners could understand the genuine difficulties of the clients.
In our case the substantial reduction in funding manifested in reducing the community access for our daughter and reducing occupational therapy and physio therapy – both land based and water based for our daughter. The reduction in therapies would have accelerated the deterioration in her walking (she can walk only with support) and would have substantially restricted her mobility. The plan reduction would also have cut short accessing short term accommodation which is necessary to prepare her for future Supported Independent Living.
Some clients due to reduction in funding would compromise on personal care affecting their hygiene. This may save money temporarily but would increase the costs substantially for medical services and increased personal care down the track.
The changes in funding – up or down- should be done collaboratively and with mutual understanding. The reduction in funding may save some money now for NDIA but would cost much more down the track.
After approval of the plan, a periodical visit/ discussion with the client by a well-trained NDIS planner during the year would help identify if there are any rorts, if there is any mismanagement of the finances; and on the positive side if the funds are being spent with meticulous planning and diligent management. Learning from theses mini-audits could be shared among the planners for them to incorporate those in their plan reviews. The plans which are well managed and well run could be automatically rolled over and/or could have an extended plan period – say two years instead of standard one year. NDIS resources used in preventive manner such as above could save substantial money, time on part of NDIA and energy of the clients and carers. When recruiting planners , they should come from variety of expertise and some with lived experience.
- The review process and means to streamline it; the circumstances in which plans could be automatically rolled-over; the circumstances in which longer plans could be introduced;
As explained above, our review took 4 months after various escalations, phone calls and emails. This is completely un acceptable. NDIA should have an internal set target – Our first review should have been done by the same planner/s under the senior planner’s direct supervision. Currently as we understand the review is done by a new planner. We had to resubmit many of our documents and write more explanatory notes for the new planner. The planner had to learn/read/review our case starting from scratch. Considerable time and effort would have been wasted in that process. Also, in case of a planner if more than 10% of her/his plans are coming back for review that should raise an alarm bell. Not necessarily that the planner is doing anything wrong, however it is worth checking her/his planning process in understanding why there are more than normal reviews being requested. The planning review process should be transparent. If the reasons for cutting the funding are genuine the clients should be explained why the plan has been cut. The planner should have experience and training to suggest better alternative ways of executing the plan and should be able to explain it to the client.
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- Other points a. Delays in decision making As our daughter is losing her walking ability in last couple of years, our Occupational Therapist has recommended certain changes to our bathroom. The changes would avoid accidental falls and slippage of our daughter, her caring staff including us while showering her. The OT recommendation and subsequent quotes were submitted to NDIS in November 2018. However, as our plan review meeting was scheduled on 19th December, as good citizens we decided to discuss the matter with the planners before signing for the home modification even though we had substantial funds in the plan. We were promised in the planning meeting that within 48 hours they would revert back to us for the home modifications proposal. The home modification was deemed to be non-complex by the OT and the builder. It took NDIA 4 months to approve that proposal. The approval was given as part of the review process. In the meantime, our daughter fell twice in the bathroom while showering, fortunately not getting seriously hurt.
b. Providing misguided information / complaints process After our planning meeting debacle and reduction in our plan by 30 % we had asked for a plan review and also registered a complaint with NDIS for lack of transparency and lack of understanding on part of NDIS planners of basic finance principles and method of extrapolation for forward planning.
The local members office and us were wrongly told various times that our complaint has been resolved and Review of our plan was being actioned. This went on for 4 months. Nobody from NDIA could elaborate on why their system was showing our complaint as resolved when our review was not complete and what ‘being actioned’ meant.
A set timeline and an informed answer would increase client’s faith in the system.
c. Empathy on part of planners This is a minor point but we thought worth bringing to your notice. After the review of our plan, we were called on a Friday evening on 18 January around 4.30 pm telling us that our plan is approved and we were sent an email with a copy of the ‘preview’ plan at 4.33 pm when the planner know that we were going to be out of town. On our return on the weekend when we logged on to the system the new plan was in place and the old plan was terminated 4 days prematurely. The services availed during those 4 days were asked to be claimed from the new plan which was substantially reduced. We were not given an opportunity to comment on the proposed ‘preview’ plan. We found the whole process it to be very unprofessional. After the Friday 18th January we could never communicate with the planners who had worked on our daughter’s plan. This highlights the requirement of planners having a thorough training and understanding of complex plans work. They need to understand that bookings for services are required to be done well in advance.
d. Not providing mobile shower chair after approving bathroom modification
We were quite disappointed when the planner discussed and agreed to get back to us within 48 hours to approve bathroom modification (remove shower screen, raise floor with insert, place a ramp so our daughter can safely be transferred) but refused to agree to fund the mobile shower chair. He did not think it was reasonable and necessary. When our daughters’ mobility is now compromised and has had falls walking into the shower, is this not a requirement?
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Once again, this highlights that the planners to be educated about complexities of various disabilities.
e. Closing previous plan account After the plan review process when our new plan was approved, our old plan was closed on the same night and as self-managers we were not able to claim any invoices and pay the providers. When we rang the NDIA office and wrote an email to the planner there was finger pointing between planning and Finance department. There was no one person in whole NDIA office could tell us what the invoices claiming process is in a situation like this or whether our account could be unblocked. There was misguided information from NDIA office as to how to proceed and finally we were told to put in manual claim for the invoices. It took almost 3 months after various follow ups with NDIA to get these invoices paid. In the meantime, we had to deal with providers and their repeated reminders for payments. 4 months for plan review and next 3 months for payment follow-up is not acceptable by any standard. Again, in addition to looking after our daughter and medical appointments you can appreciate substantial energy and time that we had to spend. A thorough process training, delegated authority for genuine invoice approvals within certain Service level agreements (SLA’s) timeframes would minimise these delays and anxious clients and providers.
f. NDIA triaging system to divert a call to the Centre of Excellence: When we call NDIA 1300 number for any subject, currently the person who answers the call tries to answer the question that the caller may have. Introducing triaging system at the First point of call and then to direct the call to the Centre of Excellence (COE) representative may help client getting a correct answer. As an example within NDIA office a COE could be for the topics such as assistive technology, Home modification, Accounts and Invoicing, portal technical and process issues, plan review applications, general enquiry etc The staff in the COE should be trained adequately and empowered to answer questions in the subject of their expertise and take decisions at the delegated levels. As a step further, a trained Occupational Therapist could be part of the Assistive Technology and Home Modifications team, a senior planner could be part of the plan review team.
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