Introduction

The perspective of consumers is critical in evaluating the level of market readiness for provision of services under the National Disability Insurance Scheme (NDIS). Consumers are actively voicing their opinion on this issue through the multitude of social media channels available. Despite the substantial amount of engagement on these platforms, the information has not been used to inform reviews on the NDIS.

The Health Issues Centre (HIC) specialises in ensuring the consumer perspective or experience informs improvements to the disability and health care systems. Increasingly, Health Issues Centre is turning to social media to better understand the views of consumers. Health Issues Centre has pioneered methodologies using digital tools and informal processes to capture the inputs of consumers who’s voices rarely reach the negotiating table. These tools include self-directed conversations conducted through social media, use of video to capture narratives and vox-pops and the use of deliberative forums to facilitate collective decision making.

While Health Issues Centre recognise the importance of inducting consumers into formal organisational processes such as advisory committees, governance roles and quality and safety committees, Health Issues Centre recognise that the same social determinants that deny access and equity to many consumers also act as barriers to participation.

There is a limit to the number of people who can attend workshops and forums or provide formal written submissions to questions posed by either the National Disability Insurance Agency, consultants they engage or the Joint Standing Committee.

Health Issues Centre believe that the conversations occurring on social media around the implementation of the NDIS provide a rich and important narrative of people’s experiences with the scheme. What’s more, the people participating in social media represent a broader spectrum of society who are usually excluded because of their social-determinants from participating in focus groups or workshops. When compiled, the collective lived experience provided on social media provides one of the most authentic and broad contributions to the issues being considered by the Joint Standing Committee on the NDIS from the consumer perspective. Increasingly, organisations are understanding the crucial role consumer engagement needs to play. Unfortunately, is seems that neither the committee or NDIA have tapped into rich feedback being provided on social media constantly.

This submission by Health Issues Centre taps into the strong voices and themes of social media. Firstly, this submission provides an overview of the important role social media is playing in the context of market readiness. Further in this submission the Health Issues Centre specifically answers some, but not all of the questions related to the Market Readiness Inquiry that were provided by consumers on a number of social media pages during the month of February 2018. While many social media posts celebrate successes, this submission has focussed on the issues and concerns raised by consumers. To protect consumers, information has been de-identified.

The participation rates on the community-led NDIS social media sites, namely Facebook are substantial. In total there are almost 100 NDIS Facebook sites with a membership of nearly 90,000 people. Facebook pages have been established for general discussion, or specific to an area, disability type, complaint with the NDIS, plan implementation method, life stages and for specific roles (i.e. people with children in fostering arrangements. There are a wide range of people participating in the discussions and moderating pages including participants, planners, local area coordinators and providers, family members and carers. It is acknowledged in discussion posts that people from the National Disability Insurance Agency or government departments are informally observing the conversations, but not interacting or formally using the information available in their work.

Facebook sites provide people with an opportunity to enquire, share, complain and seek support from other participants, carers and providers. Participants are likely to receive an answer to their question within minutes, if not seconds. They can quickly canvass a broad range of perspectives, be reaffirmed or corrected if they are feeling dissatisfied with the NDIS experience and are provided with a multitude of solutions.

The biggest Facebook group is NDIS Grassroots which was started in 2012. It has over 41,000 members, growing at a rate of over 600 new members a month and posting dozens of new posts a day. The next largest site is The NDIS Discussion Group. This group only started in March 2017 but had a 12% membership growth this February and has currently over 5000 members. Since July 2017 it has had 2,500 posts and 50,000 interactions (comments or reactions). This is an extraordinary rate of chatter voicing frustrations, celebrations, disappointment and uncertainty with the NDIS process. It also indicates that the traditional channels of communication being used to roll-out this large social reform are failing to meet the need of participants.

These community-led Facebook sites often develop organically and are administered by volunteers co-opted to the roles. While they create rules about engaging in discussions on their group page, they do not have a formal process for appointing administrators or making decisions that may impact the group. In particular, individual concerns raised on Facebook do not get formally escalated so that they can be addressed by organisations who can influence change in the NDIS roll-out.

People are turning to social media to have questions answered and to share frustrations, anxieties and celebrations. While there are risks that social media conversation may provide unreliable information, many participants feel that this is the only effective communication channel available to them.

Participants report that they are recommended to contact the NDIA or their Local Area Coordinator when they have questions. However, many comment that they have tried contacting the NDIA for support in the first instance but are unable to get a timely response. Participants and carers on Facebook report:

Telephone enquiries result in long waiting times, unreturned phone calls and staff lacking the knowledge to answer questions
Emails are reportedly often unanswered despite being re-sent multiple times
Website does not easily provide the information the participant is seeking
Negative comments on the official NDIS Facebook page go unanswered demonstrating an unsophisticated social media strategy which is ineffective in addressing a participant’s concerns.
Visiting the Local Area Coordinator or NDIA as a

As a result of these experiences reports of dissatisfaction with NDIA customer service are high.

Response to the NDIS Joint Standing Committee

Inquiry into Market readiness

The remainder of the submission specifically responds to some, but not all of the questions posed by the NDIS Joint Standing Committee.

a. Participants experience of implementing a plan and

engaging with providers

Participants often turn to social media to answer questions about how to implement their plans and find local providers. Questions posed on social media can be broad such as how plans are managed and how can the plan budget be spent, to questions about specific compliance issues such as whether receipts need to be kept, how to employ a staff member, how to implement a service agreement, whether a provider needs an ABN, managing the portal or where to seek a specific assessment to prove disability if this is no longer being provided by the local state service.

The social media discussion shows that people are finding the experience of implementing their plan confusing and that the process requires a high level of knowledge to understand the intricacies of plan implementation. They have reflected that there is quite a skill in working out how to allocate the funds so that they will last for the duration of the plan, prior to engaging with providers. This difficulty is compounded when the plan dollar amount is significantly reduced thus requiring them to also prioritise needs which they perceive as being equally necessary.

Relying on social media to answer technical NDIS questions risks people receiving inconsistent or false information. Conversely the large number of responses a person receives can illuminate inconsistencies with NDIA practices. For example, one person reported that their planner said that car modifications were no longer paid for by the NDIS, while others spoke of just having plan modifications approved. This inconsistency can further heighten the participant or carer’s anxiety.

The delayed responses and the regular inability for participants to get firm answers to essential questions from NDIA, delays the participant’s ability to effectively manage their plan and engage

with providers in a timely way. This can then have an unintended consequence of the participant’s plan being reduced in the subsequent plan. This is because it appears that the participant has not required the full allocation of NDIS funds, when the reason for the underspend was a delay in implementing the plan. Participants report feeling frustrated when their explanation for the underspend is not considered by the NDIS planner.

Some participants are finding the time for getting access and approval to the NDIS, particularly in relation to equipment and early intervention supports is too long. When they contact the NDIS, they cannot get an indication of how long they may need to wait. This is causing financial stress as they pay for services out of pocket or is preventing the participant from accessing the time-critical supports they need.

People potentially face a huge financial risk if they buy a suitable car and then have the car modification request rejected or not processed in a timely way.

People face a significant barrier if an element of their plan needs changing because of an error on the planner’s behalf or change in the participant’s circumstance. Timely communication from the NDIA is the first barrier they face. Simple changes to the plan can be denied or extremely protracted requiring a plan review. It is well discussed on social media that a review can take over six months to complete and can then lead to a further reduction of the plan budget. The message that plan reviews can lead to a subsequent reduction in the plan budget is trapping people and making them feel that they are unable to complain about a plan which they feel doesn’t reflect their needs.

Many people on Facebook groups report that they do not have options for providers due to the specific challenges presented by their disability or their geographical area. They report long waiting times due to the increased number of people trying to access therapists with the roll-out of NDIS. Some participants are finding that they are no longer able to access their local hospital services because they are now a NDIS participant, without an alternative available in their area.

Other participants are overwhelmed by the number of providers advertising in their area and lack the skills and tools to evaluate which provider will be most appropriate for their particular circumstances.

Unfortunately, participants have often reported being harangued by providers for unpaid invoices. At times this has included participants having to cease supports or being at risk of losing their accommodation or key support worker that understands their needs. Circumstances where this occurred have been when a plan had passed the date for review or where NDIS had made a verbal promise to pay for crisis accommodation but has then been slow in creating a formal plan.

c. The development of the disability workforce to

support the emerging market

There is a very strong voice coming from families who are concerned that the skills of the paid workforce are being prioritised above the experience and knowledge of family members who have cared for the participant throughout their lifetime. In telephone interviews conducted by the Health Issues Centre it was not unusual for family members to have studied disability or other

subjects pertinent to understanding how to provide the best care for their family member. Even without specialised training the family member will have gained a wealth of knowledge from attending therapy sessions, informal research, speaking with others caring for people with similar conditions and of course the years of caring for the participant on a daily basis.

They reported feeling excluded from the planning process, in particular the optimal structuring of the plan to meet their participant’s needs and their own capacity. They felt their own needs were overlooked. Many felt that there was an assumption or expectation that they would be able to manage the additional caring duties imposed on them through the introduction of the NDIS.

Family members expressed concern both on social media and through telephone-based interviews that the workforce is under-skilled to manage the complex needs and behaviours of the people they are caring for. In some cases, people are reporting that they are unable to find a provider who is capable of providing the level of care the participant requires due to the complexity of their needs.

Families are even concerned that simple care such as providing adequate supervision of and engagement with a participant is inadequate. People reported support workers being more intent on perusing their electronic devices than ensuring the safety of the person they were supervising. Another reported that apart from receiving a few emails, her case worker did little to provide her with options or ensure she was getting the most out of her NDIS plan.

They report a high absenteeism rate with providers. This is not factored into the NDIS plan budget allocation so that managing and employing staff at short notice can be afforded. A highly changing workforce that can see multiple support workers care for a participant over the course of a week can exacerbate anxiety for participants and require the family member to be constantly orientating new staff to the routine and home layout. Often providers do not clearly communicate staffing changes or take the necessary responsibility to ensure that a support worker is available to cover the shift and is appropriately orientated.

Ageing family members have little confidence that the role they play in trouble-shooting, gap filling, inducting new staff, and ensuring the workplace (their home) is suitable for both the participant and the provider, will be well managed when they are no longer able to fulfil this role.

d. The impact of pricing on the development of the

market

Participants have an inconsistent understanding of how service providers should be charging. This leaves some participants feeling that they have been over-charged and others understanding that the charges reflect the whole scope of work required in providing a service.

The confusion is often related to indirect care provision charges such as report writing, travel and organisational administration. Some participants are not even aware that providers can charge for indirect time at all. Others are concerned that they are being charged for poor administrative practices within an organisation. For example, one participant was concerned that they had been charged by the provider for responding to an email the participant had sent reminding the provider that they needed to send an invoice. The participant felt that they should not incur charges and

hence have the amount of supports available to them reduced as a result of the providers poor account keeping practices.

While many participants may choose to move to another provider when they experience charges they believe are not fair, not all participants have multiple provider options in their area or are capable of making the change. The sentiment the providers are only in it for the money, not for the person with disabilities is common.

During a telephone interview, a participant reported that they believed the provider caring for their daughter had introduced cost-cutting since the introduction of the NDIS. This included reducing meal sizes, having lower staff to participant ratios that prescribed in the plan, a reduction in activities being provided and using unqualified staff. While these allegations are hard to prove because the participants are unable to provide evidence themselves, this in itself makes them more vulnerable cost-cutting measures and poor service provision

f. Market intervention options to address thin

markets

Social media is being used as a means of locating providers and sharing solutions. Specific Facebook groups exist for this express purpose such as the NDIS Support Workers and Carers Matchmaking Service, NDIS SA Worker MatchUp and NDIS find-a-housemate. Additionally, some of the discussion within general NDIS groups are requests for provider recommendations.

There are a number of NDIS provider groups. Members of these groups can be support workers, support coordinators and therapists. Within the discussion on these groups, there are often general requests for a provider who has the capacity, skill or works in the geographical area of a participant they have been referred, but are unable to support.

While many people on Facebook groups report that they do not have options for providers due to the specific challenges presented by their disability or their geographical area, other participants are overwhelmed by the number of and lack the skills and tools to evaluate which provider will be most appropriate for their particular circumstances.

i. Crisis arrangements

Social media has included conversations about how crises are being managed under the NDIS. Through the stories shared, it is evident that at times participants and family members are being subject to highly stressful situations for a prolonged period of time. In some instances, the process of engaging with the NDIS has further exacerbated their stress rather than alleviate it.

In one example NDIA promised a provider that they would pay for emergency respite care, but then failed to develop a plan in a timely manner to allow the respite agency to be paid. The provider threatened to remove this participant from their facility. NDIA did not provide a timely response to resolve this situation, leaving the family member anxious that the outcome may lead to the participant becoming homeless.

While a higher rate of suicide among people wanting to access the NDIS or not having their plan meet their needs has not been proven, this is discussed as a concern on social media and would merit further investigation.

The slow processing speed of change of circumstances arrangements can leave participants feeling concerned that they will run out of money before their increased needs are recognised and their plan adjusted. While the paperwork is being processed they may make the decision to increase supports. If the planner does not agree with the participant’s analysis of their needs, they run the risk of having over-spent their plan and being unable to fund even their most basic support needs prior to the establishment of the next plan.

Another participant reported that they were relying on their parents to fund their increased support needs while they awaited the outcome of the change of circumstance decision. This places an unfair financial burden on the parents of adults with disabilities that could be expected to be paid for by the NDIS.

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