Editors Note: This is a superb article about a very worrying development by the NDIA. I hasten to add that the NDIS scheme itself has not been changed in terms of the legislation but I am very concerned that the agency administering the scheme has seeen fit to radically alter the self management process without any consultation with the disability sector. This is yet another example of the NDIA completely failing to understand, comprehend or implement co-design and collaborate with the disability community.

Self management is vital to empowering disabled people and letting us be in charge of our own lives. We need to be free to innovate and manage our funding packages without unnecessary and totally unreasonable restrictions on our lives. Even the ATO which deals with far more money than the NDIA does not impose these type of onerous obligations on taxpayers. Why are disabled people being treated with suspicion and not trusted to manage their own lives?! If you feel the same way then make your feelings known to the NDIA by writing to the CEO and all individual Board members. They need to know that these sort of rules are not acceptable to the disabled community.

The names and Bio of all NDIA Board members can be found here. However there are no contact details provided, either email or phone. This is a very poor decision made by the Board – they should be contactable by the disability community. I will search out their contact details and put up a page with their contact details shortly and update this post with a link when that is done.

 

by Christina Ryan

Until recently Australia Post held the trophy for the most outstanding example of corporate self-sabotage in Australia when it increased its costs while reducing its postal service outcomes. Australians have been turning away in droves, a not surprising response to such a business model.

Now, however, the National Disability Insurance Scheme (NDIS) has made a play for the outstanding self-sabotage trophy by making access to the Scheme so unwieldy that recipients are unable to use it. Particularly those who want to self-manage their NDIS package so that it can be more flexible in meeting their needs.



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The NDIS is built on the principle of control and choice. Recipients are intended to have a level of control over their disability supports – choice of who they engage, freedom to design innovative combinations of supports, when and how they use supports – within the context of their approved plan. For many it will be the first time they have had any opportunity to choose their provider, or their support person, or the level and mix of support to achieve their goals. For many more it will be the first time they have accessed the level of support they need to achieve dignity and independence as a person with relatively high support needs. A 2009 AIHW report identified that more than half of people with high disability support needs had access to less than half the supports they needed.

Over the last six years of construction of the NDIS people with disabilities have emphasised the need for individualised funding for NDIS packages. It was important that people with disabilities were given control over their own package, given access to their funds, and had control over the way it was spent. This primary concern of the disability movement was hard fought for. Without the ability to self-manage and the ability to control funds the NDIS would simply become a replication of the old system. Our once in a generation opportunity for major reform would be lost if we could not take the lead in our own lives.

Despite these concerns, the loudest voices to government remained the service providers. They sat on all of the working groups and design forums and had the ear of government. People with disabilities fought hard and managed to gain representative status in some of these forums, but were consistently outnumbered by the vested interests for the existing system.

When undertaking its investigations into the feasibility of an NDIS the Productivity Commission identified the importance of people with disabilities achieving control and choice. While it recognised the disability support system as being fundamentally broken, it also recognised that the solution was not to simply throw more money at the existing system to make it bigger. Additionally, it noted that it would be impossible for the existing support system to respond to the doubling of demand which the NDIS would create. The concept of individual control, using both formal and informal supports, would contribute substantially to the greater capacity required as people mixed specialist personal care needs, with unspecialised social supports. It would ensure that people could access the supports they needed outside the existing support system, and take the pressure off the specialist disability services needing to be everything to everyone.

Slowly the notion of control and choice became embedded within the newly emerging structure of the NDIS. Alongside this the disability movement fought for the NDIS to be built using human rights principles – the social model of disability – as outlined in the Convention on the Rights of Persons with Disabilities. Rather than accessing the Scheme through specific diagnoses, eligibility would be determined because someone had a lifelong disability and also required a particular level of regular support. About 10 per cent of the Australian disability population falls into this eligibility level.

From the outset service providers have been nervous about their financial certainty. The move from block government funding to a market based model, where individual recipients choose providers, and choose what types of supports they want was a direct threat to many service providers and their business models. While demanding significant funds from government to assist with remodelling their businesses, service providers also started to voice concerns about the level of risk faced by “vulnerable” people with disabilities as they engaged informal supports. An undercurrent of doubt about the horrible dangers posed by people moving outside the existing system commenced and has continued to grow unabated.

Whisperings about risk took hold and started to grow.

The service providers remained the most powerful voice to government and achieved the majority of seats on the NDIS board. As an independent statutory authority the NDIS would self-govern within the boundaries set by its legislation. While it is critical that the day to day management of the Scheme is protected from government interference (and there have been attempts), this structure also makes it almost impossible for people with disabilities to do more than tinker round the edges.

It is now three years into the NDIS. Initially four trial sites commenced, distributed amongst various regions of Australia, focussing on particular age groups or geographic locations. Then a year later a further number of trial sites joined the Scheme. Finally, as we approach July 2016 the rest of the national rollout will commence, region by region across all states and territories.

Three years in some systemic failings are becoming clear. Most notable of these is that the central tenet of control and choice is seriously under threat. Some would argue that it is being deliberately undermined by vested interests and by government interference. Others would cynically suggest that the Scheme was always designed to act as it now is, and that control and choice was simply rhetoric used to silence the disability movement.

The most concerning threat is to self-management as a concept. Recently, when asking numerous self-managing NDIS recipients about their experience some disturbing information emerged: without exception every single person was considering abandoning their self-management as it is overly bureaucratic to the point of being overbearing. Additionally, most had not implemented the majority of their plan, rather they had focussed on one or two key supports and the rest had sat there unused because it was too complex and bureaucratic to get it all underway.

NDIS recipients have already been through an eligibility process, sometimes taking months, which proves they are in the 10% of people with disabilities needing a high level of support. Then they have been through a planning process which identifies the reasonable and necessary supports that they need and a plan is signed off.

Somehow this isn’t enough for the NDIS; it still views people with disabilities as a risk to government funds. So, each NDIS recipient is required to jump through further hoops to prove that every single support that they need (yes, they have already been identified as needed) is actually the right one and is actually needed, and is actually value for money. Before anyone can use their NDIS they are required to reprove repeatedly that they still need what they have repeatedly been determined to need.

Additionally, they must use more formally structured supports which use complex business invoicing and payment systems. This rules out informal assistance, or the use of family and friends (the people who actually know what to do and who are more trusted by the person), because none of these people do formal invoicing or maintain business level payment records.

The NDIS was originally structured to release funds to people who were self-managing so that they could get on with their lives and implement their plans, but some people found the system new and confronting. Not surprising really, as most people with disabilities have been totally uninvolved in their supports and the payment for them.

Simple answer? Support people to get the hang of reconciling their regular upfront payment.

NDIS answer? Stop releasing funds to anyone at all.

The Scheme now operates fully on a reimbursement system. So, people have to pay their own supports up front and then lodge a claim through the overly complex portal to be reimbursed. Paying upfront might work okay for those who have a few hundred dollars a week in supports, but some people have $8000 to $10,000 per week in support costs. This means they must constantly be seeking reimbursement in order to afford next week’s costs.

Somehow the NDIS missed seeing that people with disabilities would have been paying for this stuff for years already if they could afford it. The reason we actually needed the NDIS is because we can’t afford to pay upfront.

So, a system has emerged, never as intended, which forces people into a daily grind of seeking reimbursement through an unwieldly portal which has never worked well.

When the GST was first introduced in 2000 a similar problem occurred for small business people who found they were spending every waking hour processing tax and submitting paperwork to government. Within a short timeframe government got the message and completely redesigned how payments were made and today there is a quarterly reconciliation process used to submit GST payments to the Tax Office. Small business are trusted to be doing this correctly and are subject to auditing in the same way as all other taxpayers. Accounting software is now built to manage this.

No such respect for people with disabilities.

When we raise concerns about the complexity of the NDIS payment and self-management system their answer has been to remove self-management pillars, like advance release of funds, and force people into relying on go betweens and standard services. Control and choice has taken a body blow.

Apparently we cannot be trusted to self-manage, we must prove and reprove that we need supports, use our own funds (even when we don’t have them), and demonstrate repeatedly that we are above board. Nothing is possible without substantial amounts of paperwork to illustrate that we are not rorting the system despite everyone having been through a process of eligibility and allocation of resources beforehand.

Those who are self-managing are now finding that they cannot survive without a specialist plan manager. This is a whole new industry that has sprung up to assist with navigating the appalling complexity of the NDIS portal, the payment and reimbursement system, and to manage the risks and paperwork associated with each and every individual person with disability. Rather than building a system which is user friendly, trusts people with disabilities to source their own supports and which allocates funds upfront to do so, the NDIS has structured the system to be unwieldy and to need the go between of plan management. This adds substantial further costs to each plan, and makes it even more expensive at a time when government is already asking questions about the cost of the Scheme.

Perhaps these mechanisms have been constructed to “help” people with disabilities, but their outcome is exactly the reverse; people are turning away from self-management in droves as they are overburdened with red tape in lives that are already full to overflowing with managing disability.

The 2016 Federal budget set up a new fund to sustain the NDIS. Part of the money for that fund was sourced from unspent NDIS money. That is: funds that NDIS recipients had failed to spend. Perhaps they were unspent because they were too hard to spend.

Remember these are the 10% of people with the highest support needs. Their lives already consist of an overwhelming level of bureaucracy and complexity because of their disability. Rather than simplify and assist, the NDIS is now adding a further unwieldy layer to lives that can’t absorb it. The easy option is to give up, go back to the formal disability services sector, and allow others to take control and run everything.

This is exactly what the NDIS was intended to avoid.

This is exactly what the NDIS needs to avoid in order to remain viable as there simply aren’t enough disability services or workforce to carry the load.

This is exactly what the disability movement has raised concerns about from the outset six years ago.

This is exactly what the Productivity Commission said shouldn’t happen.

The NDIS is being sabotaged from within and is in grave danger of becoming a larger version of the old disability support sector. The Productivity Commission sounded a warning, but nobody has bothered to listen.

 

Christina Ryan is the CEO of Advocacy for Inclusion. She has contributed to NDIS development for over six years. Christina is an NDIS recipient.

This article is republished with the full permission of Christina. You can see the original article here and here.

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