NDIS PLANNING SUBMISSION
I am a sibling of a PWD, with multiple disabilities. who resides in SIL accommodation, accesses the community with 1:1 support and attends a day program 1 1/2 days a week. I am a joint Plan Nominee for my brother as a participant in the NDIS, advocate for his rights, carer when needed and a sister. I have had to reduce my working capacity by a third, in the past two years, to fulfil these functions.
I have participated in the planning process for my brother for his last two plans. The process is arduous for someone who has no experience with bureaucracy, stressful, not transparent, complex and very time consuming.
There needs to be a standardisation of Planners, LAC’s and the Planning process. The planning meeting is the single most important interface between the PWD and/or their family/ advocates. The Planner/ LAC needs to have sufficient training across a range of disabilities to:
- be able to comprehend the content of the meeting
- have an understanding of the impact of the disabilities on the lives of PWD
- be able to then record the information provided accurately
- make meaningful suggestions within the process
- construct an appropriate Plan that meets the participant / applicant’s needs There needs to be an increase in the numbers of Planners to decrease the wait time to a maximum of 2 weeks. Weeks and months without support or being able to make life decisions with certainty adds a fragility to lives that may already be significantly challenged.
There needs to be a recording, or transcript, of the Planning meeting available to the PWD and their family/ advocates as a permanent reference. We had the following experience at our last Review Meeting. When the Planner was asked to read back what they had typed into their template, it was significantly different to what had been discussed with missing detail. If we hadn’t asked for this we would not have had the opportunity to make corrections.
There needs to be a cohort of Planners that have specialised knowledge in disability areas and for those that have complex and multiple disabilities. When you are trying to convey information to a LAC/Planner who simply does not understand what you are talking about, the Planning meeting potential is diminished.
The Planning process needs to be clear, transparent, communicated in advance and open to review/ feedback as the Plan is being constructed. If the Planning process was simply laid out in language that was understood, PWD and/ or their families/advocates could arrive at the Planning meeting with the appropriate information and reports and less anxiety. Many PWD ( and their families ) are unfamiliar with bureaucratic processes. Could a phone call or email in the weeks leading up to the Planning meeting, establish an area that hasn’t been attended to? Could a simple step by step or flow chart process be followed for supply of information so a Planning meeting was organised only when participants/ Applicants were ready? Could a dedicated Planning 1800 number be provided to assist people?
The NDIA needs to provide an outline of what specific information is required in reports and funding needs to be provided to obtain these. PWD, and their families, are committing to great expense, time and stress to obtain reports that might not be providing the information that the NDIA is looking for ( or in the ‘language’ it is wanting to have it presented ). This is an area where there could be savings made. Reports, also, need to be read by Planners that understand them. When it is time for a Review meeting, the NDIA could state what existing reports it considers still valid. The NDIA could also state the areas where it would like increased information. This would minimise the financial, time and emotional burden of obtaining reports that are not needed.
When a Plan is denied or finalised it needs to be accompanied by a detailed outline of the decision making process that went into the construction of the Plan. This will build a working understanding, for the Participant and their families/ advocates, of the NDIS. This should have the benefit of making the NDIS easier to engage with over time. I have been involved in the Planning process for my brother for 2 Plans. It has consumed weeks, literally, of my time and I consider my understanding of the process, thus far, to be minimal. If I am struggling, how are PWD with no supporters navigating the process. Can they even make it into the scheme because it is so complex?
Draft Plans being provided to PWD and their families/ advocates would allow for corrections/ clarifications if needed. This is essential to establish if the Planner/ LAC understood the PWD’s needs and goals fully and that all the relevant information provided at the Planning meeting had been faithfully recorded. Additional information could be requested or provided at this time. With one Plan our PWD received, it included both an incorrect name and descriptions of disabilities our PWD did not have.
PWD and their families/ advocates need direct access to the Planner building the Plan. Expediency of communication in the early stages would decrease the number of Plans going to review. PWD need to be a part of the decision making process at every step. It impacts their life, more than anyone else, after all.
There needs to be oversight over the fees charged by Allied Health Practitioners when supplying services to PWD under the NDIS. I am an Allied Health Practitioner myself, and am disappointed with the focus on Service Agreements and fees, rather than the needs of PWD, by many Allied Health Service Providers.
PWD who have support workers cancel at late notice, resulting in them incurring cancelation fees for appointments, should not suffer the loss of funds from their Plan budget. An NDIA sponsored insurance scheme, contributed to by Service Providers, should be created to cover these situations. A premium increase could be charged to repeat offenders.
PWD in regional and remote areas with a lack of access to local services must be allocated adequate transport funding in Plans to ensure service delivery and avoid price gouging.
Family members and informal supports of PWD should be a considered option for paid support workers. If suitable support workers cannot be found and it is in the best interest of the PWD, informal supports should be a considered option and they should be appropriately compensated ( equal to the support worker rate ). Carer stress is high and easing the financial burden by paying them for work that would not ordinarily be performed for a family member/ friend would be a partial solution. With this current Plan I have taken a half day each week away from work to be with my brother. There were insufficient funds in his Plan to provide the safe ratio for his support. This takes a financial toll on my family but I feel I have no choice because I do not want him to regress.
The NDIA needs to guarantee oversight of Service Providers that receive an income under the NDIS, at least to the level of scrutiny of the Participants. Unscrupulous behaviour of Service Providers can leave a Participant’s funds exhausted and the Participant without services.
It is insufficient for the NDIA to be only responsible for the provision of funds. There needs to be an overarching oversight to guarantee that: All PWD that need assistance make it onto the scheme. That there is enough service provision to meet the need. That the Service Providers are providing a high quality service with high ethical standards. That there are sufficient funds provided for readily available advocacy in a range of areas. That there are funds to support carers and provide respite.
That there are funds available for training of support workers.
For many PWD, to not provide the above, to only provide funding, would be like putting food in front of someone who had no capacity to get it into their mouth. It is beyond neglect, it is cruel.
Please help make the scheme easier to use, with adequate funding, with adequate supporting networks and significantly higher levels of oversight.
Thank you for your time.