The Ella Centre – Phil Coller CEO

The Ella Centre’s Disability Services support 220 families who have an adult child with a disability, supported by 25 EFT staff , and up until the roll out of the NDIS received $2.5 million in funding from the NSW State Government for its disability services . The Ella currently provides social inclusion through access to community, community participation, daily living skills and assistance with self-care services. The Ella Centre is a registered NDIS provider with 60 NDIS participants to date, and is looking to continue to support the families and people with a disability under the NDIS following the roll out across the Inner West of Sydney from July 2017.

Throughout this paper reference is made to a participant’s Carer, or under NDIS terminology a participant’s Nominee. The majority of the Ella Centre’s clientele have complex needs and require support from their Carer for communication and decision making. The participant is involved to the level of their ability.

A significant issue for Carers has been the ‘rules’ around getting an NDIS plan. The understanding of reasonable and necessary has not been clearly explained to participants and service providers. The NDIA operates on the basis of eligibility first, what (government) deems to be reasonable and necessary second, and then lastly choice and control for the participant once they have a plan. The NDIS was promoted to people as a scheme where participants could put forward their aspirations and set goals to meet them. (Although it recent times this has been changed to ‘leading an ordinary life’). This set up expectations that Carers and participants would have choice and control over the planning process, which has not been the case. Many Carers have come way from the planning process disappointed and many feeling they have not been listened to about their needs.

A major concern we experienced was that the confusion over the actual start of the planning process for people in the Inner West. We were originally advised by the NDIA representative, in person at a Carers Forum, that pre-planning for the NDIS with LACs would start in late June. This was confirmed at a meeting with the LAC Manager and then the National Disability Services Development Officer in early April 2017 . At this point we were advised plans were taking between 4 to 6 weeks to be approved. Our internal planning and information to our Carers and participants was based on this information, with the expectation that the first NDIS plans for our participants would activated around early August.

The planning started 6 weeks sooner than we were advised. Our first Carers were unexpectedly contacted for their preplanning meetings by LACs at the end of April which led to the start date of the first plans being late June/early July. This caused some logistical problems as our staff were asked by Carers to attend pre-planning meetings with little notice. At this time we were still implementing a new case management system and finance systems (for a July start date) and working through the processes needed to operate in the NDIS environment. The Carers were confused and anxious with this change in timeframe and left many unprepared.

Another significant issue was the priority list we were given for the transition from current service to the NDIS. The priority of access information provided by the NDIA and ADHC, that was people in accommodation services would be contacted first, people receiving community access second and then

• people receiving respite and social support services third. This priority list was never followed. We had however, used this information to pass onto Carers to assist them with their pre-planning process. We started with people in accommodation services. People were, and still are, contacted with no regard to the three cohorts mentioned above and no priority was given to any group. This created anxiety for the Carers who thought they would be contacted first and were not, while on the other hand those who thought they had a few more months to prepare were caught unawares.

Most Carers asked us for information on their current service provision, which we were happy to provide. We were organising information in line with the NDIA priority list which turned out to be incorrect. It meant staff were rushing around to gather relevant information with very little time. It should be noted staff were doing this while fore filling their usual service delivery tasks as this was additional work. None of this has been paid for by the NDIS and is not included as billable hours of support. It has all occurred while still providing service through the current system. In many instances the Ella drew down on its own funds to provide this essential support.

The relationship between the Ella and its Carers is essential to be able to provide appropriate support. A significant amount of time has been spent with Carers through the transition process and has included, orrganising general information sessions about the NDIS and how it will operate, explaining how their current support at the Ella Centre works and it will be a different approach under the NDIS, orrganising information sessions with the NDIA and Local Area Coordinators, providing one on one support to prepare Carers for their son or daughters planning meeting with reference to looking beyond just the service they receive from the Ella Centre, gathering relevant documentation on their current support as evidence for their planning meeting, answering day to day questions on the NDIS, at a Carers request Ella staff have attended planning meetings. ( This requires us to replace the staff member at our cost), assisting them when they receive communication from the NDIA that they do not understand and contacting us when they receive a plan and asking for assistance. This occurs whether they have Support Coordination in their plan or not.

Carers prefer to come back to the Ella once they have their NDIS plan rather than going to the LAC, who they do not know and have questionable experience in working with families who have a person with a disability. This is based on years of good service resulting in Carers trusting us and seeking our advice. The NDIS relies on the LAC or a Support Coordinator to support the participant/Carer but this is an inadequate system. The removal of any coordination aspect from a service provider has only added to the complexity of the system and created tension between Carers and service providers, as once they have plans they want support from people they know and trust rather than a stranger, a LAC.

The LACS have brought another element into our relationship with the Carer. Carers have reported LACs saying to them: “Your service provider will only be interested in your money”, “We were told to change our service provider” , “Don’t show your service provider your plan as they will then know how much money you have” . This is on top of LACs giving out incorrect information. For example one Carer was told course fees and entrance fees can be paid for from their plan. We were told by the NDIA that this is not the case. Because the LAC told the Carer we could it caused some angst between us and the Carer.

The planning process has been confusing and anxiety producing for Carers.

We have spent many hours talking to and assisting Carers.. Carers do not get to see a draft plan and therefore the opportunity to shape the plan in case they had forgotten some information or the LAC had not captured everything. It also means they have no say in what the NDIA planner who may exclude items and the reasons for doing so. This has led to a third of our Carers seeking reviews of their plan.

As we work with Older Parent Carers, many from a non English speaking background, there are concerns by the Carers about the process and having to speak of personal details with strangers, LACs. For some of our Carers it may take many months to build up a good relationship and the trust required for them to provide personal information. It can also take our staff many months to understand the communication methods and nuances of some of our participants, particularly those who are non-verbal. A short meeting with a stranger seems at odds with a person centred approach and best practice to gain the information need to develop a quality plan.

Another issue is the expectation that Carers will set up a my Gov account so they can access their son/daughter’s plan on the NDIA portal. Many of our older Carers do not know how to use a computer and do not own one. We have had to track down family members who can assist them and set up a computer kiosk at our office for Carers to come and use.

The NDIA activates a participant’s plan once it has been approved at the NDIA end. Plans are then posted out to people and can also be accessed over the NDIA portal. This means a persons plan has been activate for around a week before the Carer receives it. It is then up to the Carer to notify us that they have a plan, which is not happening automatically. This does not occur for a number of reasons including, confusion by the Carer on what to do next, not having time to contact and meet with us, the Carer seeing no urgency in notifying us and there support has not change ( as we continue current support until we are notified a participant has a plan) and we have been informed by other agencies that some Carers are holding onto their plan hoping to continue their state government support while ’saving’ their NDIS plan so they will have more funds available.

The process for us finding out who has a plan has two elements. The first is a Carer informing us of when they receive their plan, which is at their discretion. The second is where the NDIA notify ADHC of people who have had a plan approved. This is the point at which a person’s ADHC funding stops. ADHC will then notify us, a month in arrears, of people who the NDIA have notified them have a plan. Unless a Carer tells us they have a plan, there could be a month’s lag time in us being notified. We are expected to continue to provide support to a person during this transition process.

In two different pieces of correspondence from ADHC a day apart, they informed us that 36 participants that we currently support have NDIS plans while in the other correspondence a day later it said 18 participants. Another issue is when a participant gets a plan with less funding supports than they were previously receiving. We have been providing support at their previous level and are out of pocket for the difference while we continued to provide support until we implement their new NDIS plan.

The NDIA allows us to back date any support we have provided to the start date of the person’s plan. This is fine for Carers who want to continue with the Ella, but it means we are out of pocket for a few

• weeks’ support if a Carer decides to go elsewhere and does not inform us straight away. We cannot claim against a person’s NDS plan unless they sign a service agreement with us. We cannot get a service agreement if they go elsewhere. This has been a rare occurrence but it has still cost us funding.

We received a funding schedule from ADHC for the 2017/18 financial year. It outlined the transition arrangements for our funding across the 12 months based on the anticipated transition of participants into the NDIS from 1st July 2017. Apart from the first month’s funding, which was based on our usual monthly funding, pre NDIS, the funding for August onwards has not followed the schedule and has thrown all out budgets out.

Under block funding there were elements of Support Coordination in many programs. This allowed for the answering of day to day questions, managing a person’s support, referring people onto other services as required and adjusting support as required. The current support costs do not allow this to occur and has separated it out from being provided on a more holistic basis. Service providers and participants can be separated from contact and decision making with the participant dealing in the first instance deal with a LAC, then an NDIA planner and then a Support Coordinator before they have contact with a service provider. The NDIS system was about removing fragmentation and duplication but has added an extra layer with LACs.

Support Coordination has added another layer that seems to do little to address the fragmentation that was identified in the previous service system. We now have agencies setting up just to provide Support Coordination and are therefore separate from the support system. While this may look good on paper to eliminate any perceived conflict of interest it creates another layer that participants have to deal with. Support Coordination does not do away with the need for the participant to deal with their service provider; it can just limit their contact.

Current participants are seeking support from us as their current service provider. They have no real relationship with the LAC or NDIA and prefer someone they know and trust. They do not have the same access to LACs as they do to us. They see us regularly as we provide their service and they do not like the idea that they need to go elsewhere to ask someone to contact us about the supports we are delivering to them. It adds an unnecessary layer and is ineffective time wise. One Carer asked us to assist them but they did not have Support Coordination in the NDS plan and we asked them to seek support from the LAC. They said they tried that but their LAC was overseas for two weeks.

The demand for respite remains high, but the services that provided respite are changing as people get NDIS plans. Respite was always a dual service in that it directly supported the Care to have a break from their caring role while offering the person with a disability a quality recreational experience. The Care was the key stakeholder for respite. The emphasis in the NDIS has the person with a disability as the key stakeholder and it would seem the needs of the Care have been diminished. There seems to be an expectation with the NDIA that by supporting the person with a disability there will be a ‘respite effect’ for the Care. This may have some truth and a limited benefit to it but it is not the same as when a service was based on the Care’s needs. It changes the dynamic of the support and puts aside a Cares need which is a significant change from the previous system. Respite is a significant service for many Cars and should not be separated out, as it has been under the NDIS. A Carers ability to function has a direct impact on their son/daughter including their ability to provide informal support. Each participant requires a healthy and supportive Care and respite was a service that assisted in maintaining a Carer’s well being.

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The NDIS a shift away from a block-funded welfare model of support, to a fee-for-service market-based approach. The market based approach is hindered by the NDIA setting maximum prices. There is no reward for organisations or staff to provide high quality services, which have a cost, as you cannot be compensated accordingly. It means all workers have to do is the bare minimum to keep participants happy so they will stay with the service. There is a conflict of interest with the NDIA setting prices and also being responsible for the financial sustainability of the scheme. We have already seen the planning process impacted by the NDIA as they seem more concerned to get through the expected numbers of participants rather than develop quality plans. The same thing can happen with the costing of supports if it is left up to the NDIA. They can contain costs by limiting the pricing to stay on budget.

In a true market prices would be set by competition, not by the organisation vested in keeping to a budget (the NDIA). We would rather rely on the quality of our service, based on how we would cost it to include staff development, innovative practices and a participant’s well-being, rather than an artificially low price that only allows for a very basic service and in most instances does not cover the real cost. The unit cost does not allow much time for planning and no time for thinking strategically to look at innovation or creativity at the direct care level.

The pricing is activity-based meaning there is no payment if service is not provided. The hourly rate for direct care is based on 100% participant attendance, outside of the 8 cancellations, with no allowance built into the cost for having permanent staff who may from time to time through a range of circumstances, eg participant goes on holiday or is hospitalized, and may not have a participant to work with. As the NDIA sets the price there is no allowance in the price to cover these circumstances. Other businesses calculate staffing costs over a year and allow for vacancies and down-time. The pricing method adds to the increase pressure on financial viability for organisations. This encourages casual staff above permanent staff and therefore impacts on the quality of support available to a participant.

It also creates an issue with group activities. Set prices are based on set ratios such as 1:3. If we have a group and only 5 people turn up we can only charge the 5 people based on their 1:3 price rate and so we lose financially. From a business perspective this vacancy rate would be built into the unit price. The current price by the NDIA expects 100% group attendance to all activities.

The pricing also removes any day-to-day capacity building and support for things that happen from time to time. Many Carers and participants see their lives beyond just receiving a service but the activity-based nature of the NDIA pricing does not allow for further communication with Carers beyond direct service delivery. This is a significant change as under block funding we always allowed some time to liaise with Carers to be able to support them in their caring role.

The pricing and allocation regarding cancellations will also cause some issues. The NDIA only allows for 8 cancellations. In a true market, an agency would be able to charge for every cancellation where it has been financially impacted by a participant cancelling within a specific time frame. It means after 8 cancellations an agency bears the cost of staffing and resources where adequate notice has not been given to redeploy or use such resources. This encourages the use of casual staff rather than permanent staff who can be asked not work providing enough notice is given. It will also mean after 8 cancellations the option not to continue to provide service to a participant as future cancellations will not be covered making it financially unviable to continue to provide support.

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The Ella Centre provides support to people with complex needs that include health conditions. In any given year a person could be absent for 20 or 30 days with little advance warning. We would not be able to cover the loss of income and would need to consider if we were to continue to provide support to such participants. A significant aim of the NDIS is to it substantially improve the wellbeing of people with disability This will only occur if people have choice and receive a quality service. The current pricing is not an encouragement to develop and maintain a highly skilled and experienced workforce. It encourages a low skilled casual workforce to keep costs down. This then inhibits the supply of supports at the lower end of the pricing.

We have been told that the funding for disability will grow from around $8 billion to $22 billion for the full roll out of the scheme. More money into the scheme does not translate to better outcomes for participants, or the viability of the scheme, if certain supports are funded below industry benchmarks and the actual costs of providing certain supports is below there actual cost. If the real cost of providing direct care is not met by the NDIA then service providers will not deliver those services. This will mean a lack of direct care providers and there will be a concentration of agencies only delivering supports that are financially attractive and viable, such as Allied Health.

The Ella Centre has reduced it’s overhead costs including reducing the hours of non-client staff (administration) such as finance and reception and made a management position redundant. Our early engagement with the NDIS has meant an increase in administration time is needed to make NDIA claims, monitor service bookings, have individual service agreements and reporting under the NDIS. Any increase in staff to meet an expected increase in demand creates more administration time in advertising, recruiting staff, onboarding, training and linking to participants. This cost is not matched by the NDIS price.

The Ella Centre recently undertook the 3rd Party Verification process. This is a costly exercise and needs to be reflected in the pricing. It also seems to present an unfair playing field as people who self manage can use unregistered providers who do not have the expense of complying with such requirements, nor do they have to use the NDIS Price Guide. It also begs the question why one set of providers have to prove their compliance with the Disability Service Standards and the NDIS Price Guide and others do not. We are working with vulnerable people using government funds and therefore all providers should have to comply a set of standards to ensure safety and quality.

The setting of unit costs that enable smaller, under $3 million, providers to remain financially viable will be critical to allow organisations in rural and remote areas to be financially viable, as well as those in urban areas to allow participants a range of choices that include locally based providers to support local communities. Some of the costing issues seem to confuse efficiency with economies of scale. The setting of unit costs that only allow large organisations with high volumes of participants to be financially viable places an emphasis on economies of scale and not the quality of the service or choice for participants. It will result in fewer providers and ultimately a Woolworths/Coles type dominance in the market.

As of July 2018, the NSW government will be handing over its disability funding to the Commonwealth Government as part of the transition to the NDIS. The scope of the NDIS does not include advocacy, or specific Carer support services that were previously State Government funded. A number of Carers in the past had relied on ADHC either through support from a case manager or direct service such as a use

• Of a respite cottage at short notice.

• They have used ADHC as a safety net, particularly in times of crisis.

• The response received from the NSW Government on how these situations would be handled under the NDIS would seem inadequate as it leaves it up to the NDIA.

• To date apart from saying people can apply for additional support in their plans there is not an emergency response system in place that will replace what ADHC provided.