The Hon Kevin Andrews
Committee Chair
The Joint Standing Committee on the National Disability Insurance Scheme
Parliament House
PO Box 6100
Canberra ACT 2600
Dear Mr Andrews and Committee Members
I thank you for the opportunity to make a submission in regards to NDIS planning. I would like to discuss my personal experiences, thoughts and concerns in regards to the current planning processes.
Background:
I am the mother of a thirty old daughter, who has an Intellectual disability, Autism and multiple disabilities resulting in her having complex needs, she is a participant in the National Disability Insurance Scheme and currently on her second plan.
Prior to the commencement of National Disability Insurance scheme my daughter received an Individualised Accommodation funding package for seven years called an (ISAP) package from ADHC (Ageing Disability and Home Care) provided by the NSW government.
We had no choice but to apply for funding from the National Disability Insurance Scheme (NDIS) as my daughter’s state government funding package ceased with the NDIS implementation. I use the word apply because there was no transition across to the new scheme in any sense of the word, other than your name placed into a computer where you were reduced to nothing more than applicant number starting from scratch with all current funding taken away, with no care given or knowledge of your past history, no record of your funding, why or how you received or used your funding, over the past seven years, no consideration of the work perused to build your individualised services and support’s that had been working well to support you. Gone was your peace of mind with the security and continuity of recurrent funding, along with a truly individualised and flexible package, providing choice and control over your supports and services, with the ongoing ability to forward plan your life and services that are required to do so.
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Our introduction to the NDIS planning:
The process was very difficult and still is. I had initially been contacted by a Local Area coordinator who had no idea of our circumstances or any back ground of my daughter or of her current individualised funding package.
I went on to explain our circumstance and suggest we might best be assessed by an NDIS planner was I had been advised during the eighteen months of multiple NDIS forums and information sessions that I had attended, that you would be better off requesting a planner instead of a (Local area coordinator) LAC because word was out NDIS planners had more disability experience and a more thorough knowledge of the new system.
We eventually had our first planning meeting in January 2018. We were delighted to hear at the end of the two hour meeting at my daughter would be funded to meet her goals and that she would receive her first plan in two days.
Well that two days actually become six months, still no plan, no one to contact directly or answer to our many emails and phone calls to NDIS over many months, apparently our planner had moved on, I eventually received a phone call from another planner telling me that it wasn’t viable to fund my daughters support needs.
We then resorted to seeking assistance from our local member of parliament, as time was running out as my daughters current ADHC funding was soon to cease.
Our local Member of Parliament took the time to listen to our circumstance and understand my daughters past history and her current needs. Only with his representation and lobbying at a ministerial level, did my daughter eventually, some six months from our first initial plan meeting, receive her first plan. Then NDIS wanted to give her a six month plan, after waiting six months for this plan, again ministerial representation was needed to eventually receive a twelve month plan.
I believe there should be much more transparency and openness around how support plans are developed by planners. There seems to be a rehabilitation model mindset within the NDIS model that your disability will significantly improve or even go away in time with the provision of some time limited supports being given.
This is not the case for many participants who have a lifelong disability that is not going to improve significantly or disappear in time.
The whole planning process appears impersonalised, lacks any empathy, or any real understanding of the participant’s disability and how its impacts on their daily living and functioning. In my experience the process is not truly individualised at all.
Planners should be working with participants more openly, so participants can better understand the process, how the multiple complex funding categories work and what supports and funding categories need to be included in your plan to best support your needs. This is not the case at the moment.
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There is too much secrecy around the very opaque planning process and how plans are developed. There appears to be more emphasis on minimizing plan budgets and less emphasis on helping a participants to develop a plan that truly supports and fully encompasses all their support needs.
Planners appear to be looking for a funding categories that your disability fits into, where each disability appears to have a points or ranking system attached, that appears to be then processed into an algorithm and the computer determines the participant’s entitlements. A one box fits all model.
I believe complex needs are not understood at all, you don’t fit into a predetermined support box and planners lack allied or mental health experience or knowledge to be better equipped to apply the additional supports required. Many do not have either the work or lived experience to understand people with complex needs and often multiple disabilities.
It appears that the many supporting documents and reports that the NDIS requires participants to provide from their treating medical and allied health professional’s for the planning process, are either not read, not understood or ignored by the system and planning processes. Planners appear more focused on budgets, than peoples individual support needs, while I cannot prove this, I believe they are under pressure to reduce plan budgets annually and this formulates part of their KPI’s. This is the underlying reason for the constant annual plan reviews.
Plans are a lottery draw at the moment, with little consistency from planners. Funding for plans seem to be approved based on the individual planners and their direct senior management’s personal interpretation of legislation on what can or can’t be funded in your plan.
I have had a planner tell me what supports the NDIS might look at cutting from the next plan and the following plan the year after that. All based on the NDIS assumption that your ability is going to develop significantly in two years. I was also told “You will not be getting ongoing support co-ordination in the next plan because you can do that job yourself”. No choice! We are talking about a participant with complex support needs. Where is the parents right to work and earn an income themselves or to actually take a break and have a holiday? Of cause our loved one will always come first but carer life balance must also be taken in consideration to ensure longevity of family support.
I did request a longer plan period this year, at least a minimum two year plan, this request was ignored at first, then denied. My daughters needs will not change in the next ten months when the next plan is due and in fact certainly not going to change significantly into the future. When I asked why we couldn’t have a longer plan the answer was “we don’t give longer plans, it’s really about your daughter” you might need more funding for allied health or other supports, we need to make sure the plan is working for you. This did not make any sense to me. I believe it’s about the pressure for planners to look at cutting plan budgets each year. Hence the real reason for the annual plan reviews. Surely if the plan wasn’t working or your support needs change significantly, you the participant should be given the
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ability to request a review if and only when needed. Otherwise if your plan is working well why on earth can’t it be rolled over until such time it’s not meeting your needs?
So much emphasis is placed on the annual plan goals, plans are totally funded around goals. Goals seem too often come back in plans with wording changed and do not always reflect what was intended by the participant.
Often the key to meeting your funding needs seems to all hinged on your ability to word your plan goals creatively enough to thoroughly encompass all your support needs for the next twelve months and beyond. This is often not always achievable for people with complex needs and intellectual disabilities. Often the concept of a goal is not understood by these participants.
Whilst having life goals is positive for those that understand the concept and choose to have goals to work towards. It is not always possible for everyone. It’s become a game of words.
Where else in the general population are people forced to set annual life and personal goals that there whole life is dependent on and measured against?
Why are all participants forced to make goals each year to receive funding?
Particularly if you have an intellectually disability and do not understand the concept of a goal?
Where is the choice for the participant? Why can’t plans be funded around your support needs, supported by the professional medical and allied health reports supplied by participants that have given evidence of these needs and supports.
I believe the whole planning process is far too complex and intimidating for many participants. The system, the language and many multiple categories within categories of funding are unnecessarily over complex and very difficult to understand and navigate for many people. The system is not user friendly and particularly for people with complex needs, Intellectual and cognitive disabilities and of cultural diversity and language barriers.
Why can’t participants be given more flexibility within their support plan where the total budget for the whole plan is flexible and moveable across different support categories and line numbers approved within the plan? Give participants more choice on how their budget can be used when it’s needed, to better suit their needs.
Draft Plans:
All participants and their nominees, family carers, should be more involved in the planning process from start to finish with more transparency needed around how plans are developed after the plan meeting takes place.
How do planners work out funding figures and what categories will and will not be funded in your plan? This not explained to participants or families.
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Participants just wait to receive a plan in the mail or via email, often with no set timeframe for the plan to be developed.
When the plan is received by the participant it is a fait accompli, that’s it, if it’s wrong, then participants have to be dragged through a review process and further unnecessary stress, often after already spending months gathering reports and supporting evidential documents that are required by the NDIS as part of the yearly planning process.
My daughters plan came back this year and the NDIS had decide they would change the way her plan was managed, without her consent or knowledge. This would have taken away her choice and control of providers and placed unnecessary restrictions on her choice of providers, or the choice to directly employ her staff. This could have destroyed the current supports we have in place. This then caused a need for an unnecessary plan review.
This process simply does not make sense. All participants should be shown a draft plan, to be given the opportunity to see if the planner has understood their needs, to check the planner has captured the plan meeting discussions correctly so the plan is going to meet their support needs. Often plans are processed and developed by planners that have not met with the participants, particularly in the case of participants that have plan meetings with (Local Area Coordinators) LACS. I’ve had NDIS planners not take any notes during a planning meeting.
I believe having draft plans is a must. It would save an enormous amount of unnecessary stress on participants and families and on NDIS administrative time and expenditure, leading to the need for far less plan reviews because plans were developed correctly at the planning stage.
Where else in the business world do we take out a contract between two parties without both parties sighting and reading the document, giving them the ability to check it contains the correct details before proceeding and activating the actions set out in the document?
Annual Review: The need to recurrently fund all core supports and give participants the choice of longer plan periods
Having to be put through the annual review process is extremely stressful and time consuming for participants and often time poor and exhausted family carers. It’s not really a twelve month plan if you consider you need to go through a review process before your current plan runs out, at a very minimum one or two months before, or otherwise risk being left with a funding gap and then trying to convince providers to continue supports until your new plan is processed, or be left without supports at all. Not to mention being put through the process of annually gathering supporting documents, such as medical reports, allied health reports and the associated costs involved with this.
When you eventually receive your plan you then spend several months negotiating and signing new annual service agreements with providers. I find there is very little room for
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negotiation of service agreements with most providers anyway, in my experience it’s their service agreement terms or find another provider.
I find this whole annual review process emotionally abusive and very stressful, it’s unnecessary and frankly insulting. Waiting for the big bureaucratic stick to be wheeled, leaving you with a feeling of no control over your life from one year to the next. Living in fear that in one swing of the bureaucratic pen your plan is cut, your life is changed overnight. Not knowing from year to year what lays ahead. It’s impossible to plan long term supports with any security.
The process also wastes thousands of dollars each year in obtaining multiple reports from my daughter’s medical team and allied health professionals constantly reporting to prove that my daughter has a lifelong disability that unfortunately is not going away and not going to change.
In fact the whole of my daughter’s occupational therapy budget for the last plan year approximately $4000.00 dollars went on providing further reports and assessments for the NDIS planning review process.
My daughter came from a system of individualised funding that provided her with recurrent annual funding that was flexible across the whole of her support needs. We had security and peace of mind to plan beyond the nine months we currently have between the annual NDIS planning processes. Under her previous funding model we could request a review if and when needed, as such a change in circumstances or needs.
We have now been reduced to nothing more the beggars each year, for the ongoing supports my daughter needs, for the NDIS to listen and believe us, family carers and other professionals involved in her life. I feel our life is now owned and run by the NDIS and we live with this constant uncertainty and insecurity of not knowing from year to year what supports we will have over the next year.
The NDIS was supposed to give People with Disabilities and their family carer’s dignity and respect and security in funding their support needs to live as normal life as possible. It was supposed to make their life easier not more complicated, more stressful. Dealing with the NDIS system in general and the constant review processes just adds a whole new layer of distress and exhaustion to both participants and their family carers.
The continual planning review process has put an enormous amount of extra stress and burden on participants, and/or family carers. For participants that cannot understand or cope with the process, who is going to support the thousands of those people with Intellectual disabilities and complex needs when there family is no longer around to continually support them with this complex process?
I believe all core supports should be recurrently funded if Participants choose. Particularly supports needed to maintain participants to continue living in their own home, supports with daily living (accommodation supports) and in the community (community access). This is a lifetime continual goal! Otherwise in my daughter’s case she would have no choice but to leave her home.
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For participants that cannot work due to their disability and daily attend programmes for community access, to gain living and life skills, for friendship and companionship, these supports should also be recurrently funded for these types of programmes if they so desire. Many would be left alone and isolated from the community without these ongoing supports.
All accommodation supports necessary for people to continue living independently in their own home or shared accommodation if they so desire, should be recurrently funded. People with disabilities need to have that security and peace of mind, they need to know they will have the continual funding for these supports. So they can get on with life without the continual fear of not knowing what their funding or supports will look like each year. Giving participants the security to concertante on having as normal life as possible with the supports needed for them to achieve this.
For all other services Participants should have the choice to continue their plans beyond twelve months. If your plan working well then it should just roll over. The the annual review process is unnecessary and is a time consuming intrusion for many.
It would free up the planners and administrative time, perhaps even eventually reduced the numbers the planners needed, as we currently need more planners to be employed to cope with the constant annual review process. Planners could concentrate on the back log of people trying to enter the scheme and reducing the long waiting periods for people that actually need plan reviews, for whatever reason.
If participants want or need an annual review they can trigger this by requesting a review. If participants have needs that are constantly changing or deteriorating in functioning as the case may be, then they may need annual reviews until a level of stability is achieved.
Perhaps other supports such as Capital funding, may need to be looked at annually by a simple light touch review that does not impact the remainder of the existing plan. Capacity building supports could run for two or three year plan as these needs may change more frequently, but generally most people would need more than twelve months to make real significant capacity building gains.
In the case of children perhaps they may need plans that change every few years or annually as they are developing and needs may change more regularly than adults.
This again highlights that one box does not fit all but there is substantial scope to reduce planning for those whose needs have stabilised, are well documented and their supports are working well.
Need for more choice and Flexibility for participants within their plan.
Participants should have more choice and flexibility within their support categories to move funding to where it’s most needed within the approved plan categories.
I will give the following example.
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If you have a budget for improved daily living supports such as behaviour support intervention and therapies. You also have a budget for Occupational therapy and the budget for the Occupational therapy as depleted, but you still had a need to continue that therapy in that plan period, why can’t you move some of your funding from the behaviour support budget into the occupational therapy budget? Or perhaps use some of your core funding to purchase further capacity building supports etc.
Its seems unreasonable if the participant has real choice and control over their supports and funding, that they can’t move their funding from one category to another category within the existing support categories in their plan.
Self-Managing Plans
I believe more participants would perhaps take up the choice to self-manage their plan, if the process of paying invoices was simplified and less time consuming and more direct. At the moment, payment of invoices for services provided to participants is a multiple step process. The current Portal system is far from reliable and struggles to cope.
If an NDIS bank debt card system was introduced for participants to use to pay invoices directly to provider/supplies this would streamline the payments of invoices and at the same time keep an automatic bank record of invoices paid. With technology available such as the Concur phone application, participants could take a photo of the receipts, upload them through Concur app and a funds transfer could be effected once payment has been approved to the Credit/Debit Card. Participants could also keep a copy of all paid invoices on app system for NDIS auditing proposes.
The current portal system of paying invoices is not always reliable, it’s a three step process of uploading invoices when the portal is working then waiting two or three days for NDIS to process payment back into your account, where you then have to process payment back to providers. Not all participants have the means to pay providers directly and wait for reimbursement of their payments.
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