Designing support tools for individuals and organisations working with self- directed funding: Report of Focus Group Thematic Analysis

Prepared by Brianna Caza and Tatjana DordicMarch 21st, 2013

Ten focus groups were conducted with the consumers of mental health services, carers, and the organisations that help coordinate services for consumers of mental health services. There were four focus groups held with consumers, three with carer groups, and three with organisational representatives. The overarching goal of these interviews was to gain knowledge in order to develop a tool-kit that will be available on the web that will help people with a lived experience of mental health issues and their carers overcome barriers to using the National Disability Insurance Scheme. In particular, the focus groups were focused on the challenges associated with the self- directed funding option that is part of this Scheme. The focus groups also discussed important resources that may be needed to support consumers, carers and organisations looking to develop resources to support organisations to move towards working with NDIS.

Attached is a report of the thematic analysis performance on the focus group data. The analysis was performed using NVIVO 10.0 software. Two researchers read through each focus group transcript before beginning the coding process. They then met to discuss key themes that had emerged from their readings and agreed on a coding plan. Several iterations of coding and discussing the data were performed. Several important themes emerged from the data from this coding process. This report summarizes the key themes that emerged from within each group. There were several themes that emerged in multiple groups, and these are displayed in the tables and visual representations of the data. The final codes were sorted into three main categories: concerns, benefits, and recommendations. We report on the individual themes within these categories both between and within each participant group.

On the second page is a visual summary of the overlapping and non-overlapping concerns of the three focus group populations. On page three is a table summarizing the participants’ concerns. Page four displays an overview of the key recommendations for successful implementation of the new scheme by participant group. Pages five to seven summarize the results of the consumer focus groups analysis Pages eight to twelve summarize the carers’ group focus group analysis. Finally, pages twelve to eighteen summarize the major themes that emerged in the focus groups conducted with organisational representatives.

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VISUAL SUMMARY OF CONSUMER, CARER, and ORGANISATIONAL CONCERNS

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SUMMARY OF CONCERNS BY PARTICIPANT GROUP

CONCERN CONSUMERS CARERS ORGANIZATIONSConsumer’s ability (because of episodic nature of mentalillness)

X X X

Money Management X X XAccountability X X XFlexibility of the Plan X X XNot having enough Information X X XConsumers being taken advantage of X X XFinding Services X X XExtra burden X X XShift in their role with the consumer X XCredibility of Providers X X

Implications for the Organisation (decreased resources,increased staff training needed)

X

Accountability X

Lack of education XIncreased tension in relationships with loved ones XLack of trust XDifficulty in getting to services (e.g. transportation) X XLack of safeguards XBeing unreliable XLack of peer interactions XDifferent perspectives on what is needed X X

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SUMMARY OF RECOMMENDATIONS BY PARTICIPANT GROUP

RECOMMENDATION CONSUMERS CARERS ORGANIZATIONSEducation X X XMore information X X XService Provider Registry X X XFlexibility of Plan X X XThird-party Involvement X XMonitoring/Safeguards X XOnline tools X XMore Organisational Tools XCollective Involvement XIncreased Staff Resources XBuilding relationships with consumers XShifting organisational philosophy X

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CONSUMERS FOCUS GROUP SUMMARYAt the beginning of the consumer focus-groups, the facilitators explained that “Self-directed funding is like having a personal health budget; it places you at the centre of decisions about your care, giving your greater choice and control, to develop and manage a care plan and the funds to pay for the care that you choose. We are keen to hear your views about what you might find challenging and what practical things would be helpful if you were managing the funds and supports (services and people) that help you with daily tasks or that help you reach your goals and aspirations.” It was explained to the consumers that while now they currently receive support from an organisation that receives funding. Under the NDIS they will be able to choose to stay with that organisation, or they have the option of choosing another organisation, or they can choose to be responsible for organising their own supports. The facilitators explained that “Choosing to be responsible for your own supports is known as self-directed funding. It means you would get funds paid directly to you to enable you to purchase your own supports and you’d have to manage those funds and those supports, and you would need to ensure the funds were spent on supports that are reasonable and necessary for you to meet the goals and aspirations you have for yourself.” After this introduction, they were asked to imagine that they were eligible for self-directed funding and to think about the challenges and benefits of this situation. Below are the themes that emerged from the discussion around the general framework of concerns with the scheme, possible benefits, and recommendations.

CONCERNSWhen introduced to the idea, consumers seemed excited, but at the same time a bit wary. One participant summarized it well in the following comment: “ I mean I like the concept but I always am concerned of added burdens put on consumers as a consequence.” Many of the participants mentioned that they were concerned about their abilities to handle the responsibility, given their particular mental health issues. They worried about being unreliable. In describing this, one participant commented, “I’m from hour to hour, minute to minute.” In particular, they were concerned about three aspects of the potential self-funded program: Planning, finding services and money management.

Planning. The consumers were concerned about their ability to design and stick to a plan. They recognized that the new self-funded programme would be providing them with more autonomy, and at the same time, more responsibility. As one participant explained, “I think that it’s too changeable, what’s required, myself. That's just- is my – because I find it difficult to – I find planning difficult and I especially find living up to some document that I’ve written six months ago difficult.” This captures the sentiment of a few of the participants who felt intimidated by the responsibility and possible burden of the planning process.

Other participants remarked that they would feel very lost because they have never learned to plan for themselves. For instance, another participant said, “I would find it challenging full stop because I just – I wouldn’t know – I don’t know how to plan that thing.

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… I would need someone to help me plan that thing because I wouldn’t be – I would be stumped immediately…. yeah, because – let’s just say that for all – or most of my life it’s been “who”. Someone has said ‘You go here and you go there’ and I’ve never been able to do that.”

Finding services. Participants worried that they would have trouble finding and coordinating good, high quality services for themselves. Some commented that they had a lack of knowledge of doing such things, while others worried that they would be taken advantage of in the process of coordinating the services. In discussing how to find the services, many of the consumers talked about their current practices of getting referrals. One consumer described sitting outside the admissions unit at hospitals asking people for referrals to good doctors. Others said that most of their current knowledge on who to see comes from when they are inside a mental health facility or hospital. One explained, “Yeah and when you get locked up, that’s right, that's when you really get plenty of time to find out.” Another participant in the focus group agreed and added, “Exactly. When you’re in a mental health unit or a hospital you’d be surprised how much you learn about what’s – “Oh I didn't know about that.” This discussion made it obvious that consumers currently feel it is hard to coordinate services and believe that this challenge will be further increased under the new program. The participants commented extensively that they want peer referrals, not outside referrals.

Lack of Peer Interactions. Building on the discussion of finding services, the consumers expressed worry that they would not even know where to begin the self-managed process and felt that lack of peer interactions would exacerbate this. As one says, “My first thing that came to my mind just as soon as you said that was that people who don’t know what support is out there.” They said that they relied on meetings (like the focus group) to get information from not just the system, but from peers. They insisted that their peers actually provided the best information to them, and they worried that going to a self-managed scheme may prevent some peer interactions. As one participant explained, “But you don’t learn [information] from the nurses, you learn it from the people that are in the [program].”

In the discussion, it became apparent that some of the consumers are intimidated by the possible change and may not take advantage of the scheme simply because they are comfortable where they are currently. For instance, one participant explained, “we’re lucky because of Clubhouse so we have an organisation there that is already aware of us, knows us, and is very capable in the mental health services sector. So we’re pretty much set and okay.” So, despite being interested in the plan, when it came to actually trying it, they seemed hesitant.

Money Management. In addition to being a bit wary of planning their own care and coordinating services, potential consumers also worried about money management. One participant stated bluntly, “So, you can access the money yourself, the funds yourself but you will have a responsibility to manage and budget for those funds. That, I think, is gonna be a problem up front –“. The consumer participants seemed especially intimidated by the fact that they would be responsible for taxes and paperwork along with paying for services.

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BENEFITSThe consumers were excited about many potential aspects of the new self-funded plan. In particular, they believed that the new plan would lead to increased “voice” in their care. In other words, they feel like they would have more say about what services they get and who those services are provided by. Some consumer participants felt that the new plan would give them more control over their care. While the downside of this was increased responsibility, they also saw an upside. In particular, they felt like this could increase the consistency of their care providers. When given affirmation that under the new plan he would be able to choose his own doctors, one consumer said “Good! Because I wouldn’t have to keep changing the doctors all the time and that is bad for some people’s mental health”

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RECOMMENDATIONS Information. The consumers felt that they needed more information about the

programme and how it would be carried out. They requested that the information be directly mailed to them and explicitly labelled. They wanted “A simplified letter.” They requested that the information be “put in our face.”

Education. The consumer participants requested education on the different aspects of money management, planning services, and finding providers.

Provider Registry. The consumer participants wanted to have a provider registry so that they could easily find services. In particular, they wanted to have a way to get peer referrals on this registry because they trust their peer’s opinions more than the “six figure experts.”

Flexibility of Plan. The consumers talked about their shifting needs, and as a result, their need for the plan they create to be flexible. They wanted to make sure that it was easy to change services and their overall plan when necessary. Several of the participants felt that this flexibility was an absolute necessity because as human beings, their needs change. They brought up the idea of a living document. As one participant explained, “A written plan becomes history the moment it’s written. Whereas, what really is necessary is aliving life document – in response to a living, live creature which is us.”

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CARERS FOCUS GROUP SUMMARYThere were three carer focus groups conducted. All of the carer participants in the focus groups had at least one family member with a mental health disorder. One participant cared for her mother and brother. Another six participants attended a focus group session because they cared for their adult sons with schizophrenia and were interested in learning more about the potential voluntary program. Another two participants were fathers of sons who have paranoid schizophrenia. Another man cared for his wife who has a history of anxiety, depression, and eating disorders. There were also two participants who had children with bipolar disorder. All felt that the individual they cared for had the potential for independent living and were interesting learning more about how the program worked. In addition to their personal experiences, four of the participants reported that they were also employed by a carer organization.

In the introduction of the sessions, participants were informed more about the self- directed funding and were asked to discuss the potential program. In particular they were told that the goal was to “hear your views about what you, as carers, might find challenging about self-directed funding and what you might find helpful.” They were provided with the same explanation for self-managed funding and set of questions as the consumer group. Below are the themes that emerged from each of the three broad categories of concerns, benefits, and recommendations about the scheme.

CONCERNSConsumer’s ability to self-manage and plan. This theme echoes the participants’ worry about their capacity to plan appropriately. The biggest concern that carers mentioned was being unsure if their loved one would be able to handle the responsibility of the self-management focus of the plan. As one father explained, “Significantly, and this is probably objecting it earlier, my concern is that he is disabled in some function particularly self-management functions and this is where my sort of concerns with this sort of thing is can he look after himself and manage his way up in just about every way. To cook, to watch for himself, looks after his own personal care but cannot handle money, cannot handle decision making and cannot handle his own motivation and ongoing things.” Many others agreed that while the plan sounded good on the surface, the episodic nature of their loved ones’ disabilities may interfere with its effectiveness.

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Other participants talked about their loved ones’ “fluctuating capacity to plan.” This again links in the episodic nature of the illnesses experienced, and that the wellness of consumers is also varying across a continuum, and participants were unsure how this would be managed in the new programme. As one participant explained, “People with mental illnesses, you know, they’re all on a continuum of wellness. And if you’re trying to write a plan when they’re really well and cooperative that’s great, but if they’re not I just think I can’t even see how you’d do it.”

The participants felt that it would be necessary to have some sort of action plan in place for substitute decision making when the consumer is episodic. As one stated:

“I think one of the issues certainly for me would be whether someone with a severe mental illness makes the eligibility criteria because severe mental illness can be episodic. They can be stable for a while, then very unwell, they can relapse, and they can recover to a point. So, I think the issue is actually getting the eligibility for someone with severe psychiatric illness, and public mental health services are a core business is severe mental illness. So, we would probably be looking at encouraging a lot of our clients to at least register and go for an assessment process for eligibility. The other thing that comes to mind because I work with families and carers is the whole issue of capacity and the issue of substitute decision making. Because at times there would be diminished capacity when someone relapsed or maybe has an admission. What happens then? So, the issue of diminished capacity which, again, could be episodic, is there another third party involved? Is there a public trustee? Is there a relative who has enduring power of attorney? Is there a trustee somewhere?”

Due to their loved ones’ varying capacity to handle the responsibility, the some of the carers insisted that the plan would need to be flexible and easy to change. As one explained, “to be helpful I imagine straight up I wouldn’t like to have someone just walk up and say we’ll be going to give x amount and you write the plan up and we’ll give it to you if we approve it because I don’t think – because it’s such a changing condition. You would need to change. We will not be locked into anything.” Another agreed and added, “Yeah, it’s not locked in because, you know, we’re different today to what we were three weeks ago. We are different today to what we were three months ago and needs might change down the way and as he progresses and takes over more of his life, if that’s possible.” The carers were concerned about how easy the plan would be to change when change is required. At the same time, they worried about how these changes would be implemented because they insisted their loved ones needed continuity in their care. One participant explained this when she added, “but it’s keeping continuity because even when they are able to manage, you still want continuity within their life. So if that was kind of whipped away from them, that could cause even more stress as well.”

Change in roles. The carer focus group participants showed some concern about the change in roles that would be necessary under the new programme. They felt that it would require their loved ones to have more trust in themselves and the system, which they felt may be an issue. Some of the carer participants think that trust will be a barrier to their loved ones utilizing the services. They explained that carers are often the only support person for their loved ones, and

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the only one they trust with their care. And some consumers do not want anyone else involved. As a result they would have low motivation for engaging with the program. At the same time, it will be a challenge for carers to think of how to support the person beyond themselves being involved. So this shift in role may be difficult to transition to.

Worry about change in relationship with their loved one if decision making powers are shifted. Some of the carers also mentioned that they worried about the implications of the potential programme for their relationship with their loved ones. They worried that it may cause friction if there are different views on what the consumer needs. For example, one participant mentioned that some consumers may not think they need any help or support at all, whereas carers disagree. Building on this, carers worried that as a result, consumers would not be getting the help they need because they may not even have an awareness of why and what support they need because they are simply unaware of what their needs are. Other participants worried about the impact on the family and carer because they feared disagreements with their loved ones about what the money would be used for. They talked about situations in which they may be forced to hand over money for less appropriate needs or services. Some participants think that there is going to be more of an issue when there is disagreement between the client and their family about their care. As one remarked,

“I think where the issue’s going to be where it’s non-consensual and we see that all the time where people have a kind of mental illness thing do not want their families involved.”

Increased burden on the carer. Some of the participants worried about what implications the potential programme would have for their role as a carer. Many participants mentioned that they struggle in their role as a career. In particular, the parents mentioned that being both a carer and a parent is a challenge and they would like to lessen their load as a carer and instead be more of a “parent”. They discussed the added stress and the carer role, and it’s implications for decision making and the relationship with their child (the consumer).

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The carers worried that the programme may add to the complexity this issue by adding in another issue. Basically, it would mean changing the way they interacted regarding decision- making and this may cause strain. In addition to the increased decision-making responsibility, some of the carer participants worried that their role would expand. For example, they worried that they would be responsible for checks and references that may precede hiring a service provider

Credibility of Services. Many of the carers worried about how they would help their loved ones with assessing the credibility of different services if they were no longer working through an organization. They felt unable to currently assess how good various service providers were, and sought a lot more information about how they could assess these services. They made several suggestions to help with this, specifically, the creation of a service provider registry (see recommendations section). Some participants also showed concern about whether or not their loved ones would employ credible people to provide the services they need. Therefore a service provider register was recommended, as well as a register of support staff to help with selecting them. In short, they felt that quality control was needed- to monitor the quality of the services provided by support staff.

Carers were also concerned about their loved ones’ ability to interact directly with providers. They worried that their loved ones would be taken advantage of and said that there are definite safeguards needed- to protect consumers in dealing with third parties. Some carers were also concerned that their loved ones may use inappropriate decision-making processes in deciding who to hire. For example, one participant talked about her child’s likeliness to hire his friends as “service providers.”

Money Management. The carers were concerned about how money would be managed. They feel that consumers would not have the capacity to manage the money, and therefore carers would have to do it. Most of the carers agreed that they did not want to take on this additional responsibility. They made suggestions regarding how money could be managed through education of consumers, online tools, and third-party help (see recommendation section for more detail). Some of the carer participants were most worried about their loved ones being taken advantage of cost-wise. Some even reflected that the new system offers some carers the opportunity to take advantage of the consumer or system by mishandling the money management.

Carers also seemed worried about what their loved ones would spend the money on. One participant asked whether this will be monitored and how they can assist in this process to ensure it is spent appropriately. In fact, some participants felt that even carers could take advantage of the money. As one participant remarked, “I have the that whoever gets the money, whether it’s the carer or the resident of the patient or person, then what happens from there when the person sees that you’ve got the money, say ‘Oh, I want smokes.’ ‘No, you haven’t got any money,’ but wait you’ve got all that money. I mean, I can say that that could cause problems or I’ve got all that money and I want it now because they get very unreal when they’re unwell.” In other words, this participant worried about the implications of the money being such easy access, especially if patients were at a vulnerable point in their treatment.

The carers perceived the money management issue to be an extra burden on the already stressed caregivers’ shoulders. One of the focus groups talked about how the clients’ capacity with regard 14

to their mental health to make some decisions regarding money difficult when they’re not well. The carers worried about the implications for their loved ones as well as for themselves if the money is mismanaged. One asked, “For us, what guarantees can be put into place that that planning is monitored? Are they going to be linked with the treating health professionals? I mean, is there going to be a team that’s going to be monitoring how that planning is taking place that can oversee if someone’s becoming unwell? Like a relapse plan? Is there any sort of safeguard?”

RECOMMENDATIONS

Education. Like consumer participants, carer participants also recommended education to go with the rollout of the new scheme. Specifically, they wanted a workshop for carers- on how to sell the idea and the need for the consumer that they look after to take up the self-directed funding. They do not want to push them into it, and would like information and assistance on how to ‘sell it’ to the consumer.

On-going information and assistance/Provider Registry Carers also wanted to be able to access assistance with costing needed, and would like information to assist them with finding and assessing the credibility of services. Carers were concerned about the credibility and reasonable costing of services/service providers, and need information to support them to know what is an appropriate cost, who is a credible provider etc. They thought this would be good to be accessed during the new scheme. In addition, they felt like online information support would be beneficial. They would also like sample stories as sources of information- carers would sample stories (i.e. case studies) which would give them a guide on how the money can be allocated, types of services etc. Tools and guidance to assist with managing money is also important because carers would need to learn new skills around this and then help the consumer to be able to do the same; therefore guidelines and templates would be helpful. Carers think it would be necessary to teach consumers how to budget and would like these templates and guidelines to assist them to be able to do this.

Information. Carers wanted more information. Specifically, they felt a hardcopy of key documents such as the money management tools and templates would be useful so that they can easily refer back to it.

Third-party Involvement. Carers think them managing the money would be too stressful; a third party would be needed in some cases, particularly if the carer and consumer have differing views on what is needed. In addition, they would like to have a service providerregistry and ways to gain reviews in order to determine the credibility or quality of the services.

Monitoring/Safeguards. Carers felt that proper monitoring of the system is needed. Living document that is Flexible. Carers felt that whatever document was formed would

need to be flexible. As one explained, “A living document is what’s required to be flexible.Tools that are flexible to changes, life changes”

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ORGANISATIONAL REPRESENTATIVES FOCUS GROUP SUMMARY

The third group of focus group participants were organizational representatives. The individuals who represented carer organisations were asked to think about the challenges they foresee in the programme from their perspective. Specifically, they were asked about their perspective in the areas of planning and review, area of making choices, money management and managing support people. In the introduction to the focus group session, organisational representatives were told, “When I talk to you about this, I really want you to focus in you as an organisation, what challenges you might have or what things might be helpful for you.”

In regards to planning and review, as an organisation there’ll be a number of consumers that you might actually be approached by who have decided to manage their own funds. They might be your existing consumers, they might be different ones. You might actually be asked to support them with planning and the review of that plan and judging by the consumer feedback, that is a very highly likely scenario. So many people with mental illness find it incredibly challenging to actually carry over their own planning without the support of someone else, so that is likely to happen. In line with that and thinking of it as maybe new consumers walking through your door or your existing consumers that may have chosen to go that way and are eligible, do you guys see there any challenges for your organisation there, or would you be quite easy shifting into that new dynamic?

Eligibility and ability of consumers. Like carers, the organizational participants also voiced concern about the ability of consumers, particularly those with episodic mental health issues, to be able to manage the plan. They also mentioned the consumers’ fluctuating capacity to plan and showed concerns around the fact that there may be diminished capacity to make decisions and plan when a mental health issue is in question and the consumer relapses or are admitted to hospital. These participants wanted there to be a clear substitute decision maker in this case. In addition, they wondered if these individuals would even be eligible for this scheme and what implications that their (in)eligibility may have.

The organisational participants worried about how well the consumer would be able to arrange their own services. They stated that the clients are likely to have a lack of knowledge about providers. As a result, the organisations think that it is not possible for consumers to make the best choices for themselves if they are not aware of what their options are (the providers available, what the providers offer). This echoes the same concerns that the consumers voiced themselves. The organisational participants explained that since even other providers (the healthcare system, medicare, hospital and referral clinics) do not have the best knowledge of what services are available (according to the service organisations) and therefore, it may be next to impossible for clients to figure this out for themselves.

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Money Management. The organisational participants, like the consumers and the carers also expressed worry about the consumers’ ability to manage their own funds. The organisations believe that consumers will need help and training with money management. Other organisational participants felt that this will be too much of a challenge for some consumers, and therefore organisations will need to expand their core business or the services that they offer to assist with this. A core part of this will need to involve providing accounting support as this budget based work is seen as most challenging. The organisations worry about the implications this may have on their services as well as the implications for the consumers’ quality of care. As one organisational participant explained:

“I have got a question. With money management and being – I’m still getting my head around services delivered – but what preventive measures are we going to put into place with people who chop and change? You know, like they have a certain amount of money and then they’re going to go to the service and then they’ll be there for two or three months and they don’t like that, then they’re going to go to somewhere else. Really, by the time they’ve exhausted their resources, they’ve really not achieved a great deal. I’m not saying that’s going to be the case, but there’ll be some clients that as part of the condition or lack of confidence they’re shopping around, and they want to get the best deal but it’s costing them each time they do that.”

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Flexibility of the plan. Organizational participants felt that one of the main challenges to planning would be with regard to flexibility. They felt that flexible planning options were needed because consumers are likely to find it difficult to develop a plan, and it may take some time to be able to ascertain the clients goals/needs etc., therefore it would be helpful to have ‘flexible options’ (e.g. an interim plan, review, new plan etc.). Building on this, organisational participants wondered what their role may be in the decision making process. More specifically, if the consumer is not able to make decisions or is not functioning at full capacity, what are the options for assisting this person with decision making.

Accountability. The issue of accountability was a major concern for organisational participants. They worried about the implications for clients as well as themselves. They wondered how can the money be managed, and their services be rendered, in a way that ensures there is both accountability and that all parties are protected. The organisational participants felt that depending on how the new scheme was funded, it could lead to some competition among organisations that may also threaten accountability. Competition for funding- organisations, especially not-for-profit, could compete for funding and some organisations may look to make a profit from this scheme and/or funding allocation.

Exploitation of Consumers. The organisational participants also felt concerned that the new system may lead to exploitation of consumers. They felt the need to voice their concern for safeguards to protect consumers. Organisations want to ensure that consumers are not exploited; they would like information around what ‘protective mechanisms’ will be in place to ensure this. They also wondered what their role in ensuring that exploitation did not happen would be.

Differing Perspectives. Some of the organisational participants worried about what would happen in situations in which there are differing perspectives regarding optimal care of the consumer. Similar to the concern that carers had, the organisations felt that there may be instances in which there is disagreement with the client about what services are needed. So, their main concern was if the consumer (especially if experiencing diminished capacity at

that point in time) and the support network (or lack thereof) disagree as to what the decision or needs should be. The organisation was unsure about how this situation would be handled.

Uncertainty over the Organization’s Role in the Process. Organizational participants felt a little uncertain about the implications of the new programme for their role with the consumers. In many cases, the organization wanted to retain some of their current functioning. For example, one participant felt it was important that the organization have a role in assessing the decision making process. The organisations feel that it would be helpful to be able to continually assess and perhaps intervene or re-evaluate the decision making processes used (in forming the plans) in light of the complex nature of mental health cases.

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Other organisations wondered how the issue of credibility would be handled in the new programme. They emphasized the need to assess credibility of services. Organisational participants felt it would be helpful to organisations if they could assess the credibility of the services that they need to assist the client to engage (a system, process or information source to assist with checking credibility is needed). The move to accreditation for various organisations is mentioned as something that may assist with this. Also, hoax scams are running so need to be wary of these.

Some organisational participants mentioned that the new scheme is likely to impact the way some organisational forms do business more than others. They mentioned that it would lead to a fundamental change in the service model. More specifically, organisations think this could signify a move away from the traditional welfare service model and traditional brokerage to a model which is more focused on building capacity; also potential for services to seek profits and increase competition. They felt that this would cause specific issues for under resourced NGOs because they may not have the resources to transition to this new model of care and funding. Therefore they will not be able to be competitive with the larger organisations with more money.However, concerns about the shift in the organisations’ role under the new scheme were inconsistent across focus groups. While some voiced concern over dramatic changes, other organisational participants did not see a big shift in their role under the new scheme. They just felt it was a “bit more than what we’re already doing.”

These organisations don’t see this as a significant shift from the services that they currently provide to individuals; just a little bit more, perhaps more individualised is what they have heard. Some organisational participants thought that organisations would need to work to expand their services around the planning, review and side of the business in order to fit in with this new model. As part of this they will also need to resource differently in terms of staffing and ensuring that their staff can assist consumers to fit with additional needs.

Impact of the change on the organisation. Many of the organisational participants voiced concern about how the programme may change the organisation itself. Specifically they voiced concern about the Stability of the organisations. They were worried about how funding will change and/or impact upon whether or not organisations will be able to support clients. They were also concerned about whether the organisation and staff will be stable and if the current processes used will be allowed for under the new scheme. Building on this concern, the organisational participants said that they foresee a lack of stability contributing to a problem with retaining quality staff. They felt that less stability would lead to less certainty about jobs and less qualified employees interested in pursuing those jobs.

Organisations also worried about the impact of the plan on their relationship with their current consumers. In particular they felt that they were at risk for losing consumers and funding, because a significant number of the current consumers that organisations may engage at the moment will not be eligible to receive this new funding. Some organisational

participants also worried about how to articulate to both consumers and the healthcare system what it is that they can provide (in concrete terms that will be easily understood by the public, 19

especially considering the diversity of needs that consumers have- how to communicate it in a way that makes sense to all of these people). They talked about the change leading to difficulty in figuring out what their “core capabilities and organisational identity are.”

Some organisational participants mentioned that they already have high workload and lack of resources. They explained that this is an existing issue that may be exacerbated by the change to self-managed funding. They would need to align their staff skills with the new services they would need to provide under the new scheme, and this could be a challenge since they would need to expand their services and therefore the skills of their staff with limited resources. As one organisational participant articulates:

“And you just have to be continually in this flexible way of working with people. There are gonna be days when people are gonna be manage their money, but I can tell you right now that in order to manage your money, you're going to have to be an accountant because you're going to have to be able to quit. Now, unless we are able to put it in place, supports or have through the agency, other small agencies, we're gonna assist people to do a acquittal – We, as organisations, aren't gonna have those resources to help people equip their money, which is not gonna be able to stretch out financial people.”

Building on this, another organisational participant agreed, and added that resources are very tight already at the organisation, making this near impossible. The participant explained:

“And that – You have to be honest about that. You have to be because it's your staff's resources and your staff's already beyond resourced. And now you're gonna add – I mean to be honest with you, it's like the parenting payment when people go on maternity leave, get someone else to handle it. It's okay for any organisation and it's hard work. Seriously hard work. On top of everything else, that's just the new one andthen this will be another one there will be bookkeeping involved in this big time plus the resources of your staff. So I guess that is something that needs to be looked at.”

Another organisational participant felt that they would need more physical resources to deal with the change in their workload under the new scheme. Specifically, they felt they needed more technological innovations to keep up with their clients. As one explained, “And you know what's really gonna be the highest cost? It's gonna be the software we're gonna have to gear up to work with. So we're gonna need software that we can case management with that will include all these extra things that people are gonna be asking for. That software has got to be able to be on a iPod with a person when you're out in the community, working on their review, working on their plan, which is basically is office based and more and more assertive outreach.” Clearly, organisational participants expect that they will need to do a lot of adjusting under the new plan, and worry about if they have the staff and physical resources to cope with these changes.

BENEFITS

The organizational participants were excited about the potential implications for consumers. In particular they mentioned that they felt this was supporting the consumer choice philosophy and would empower consumers to make choices. Client participants talked about the fact that 20

quality is central to this philosophy and in this regard the choice may not always be the ‘right choice’ but that this too is part of the process for all people, mental health service consumers included. This philosophy seems important to organisations to note as part of the framework that they use to assist clients to make choices.

Some of the participants saw hope in the programme because they felt it may offer them the opportunity to increase interdisciplinary team support. They felt it would be critical to set up the program so that it is using existing networks and natural resources. The organisations would like to be able to liaise with other support organisations and family in order to be able to plan effectively. They felt it would benefit the consumer to be working as a team.

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RECOMENDATIONS

Third party involvement. Organisational participants insisted that there be third-party involvement. In particular they were interested in brokerage services- a third party service to liaise with the consumer and potential organisations that can be of assistance to facilitate the decision making and engagement of services process. Organisations were unsure if they will engage with these services (have the money or capacity to do so) or if they will become brokerage services, for the same reasons. The type of model that the organisation operates within (to provide services and acquire funding) also influences this process.

More organisational tools. Organisational participants felt that consumers and organisations needed tools to manage money and needed to assist organisations to transition to the new system (particularly if under resourced in terms of staff numbers). Organisationalparticipants also recommended a service provider register- organisations are not entirely sure about what other services around available; it would be good to have a register or list of directories which provides this information. This is similar to what both the consumers andcarers suggested. In addition, organisational participants also talked about the importance of online information support to help with finding and evaluating services. In addition, they pointed out that assistance with costing needed- organisations would like information about how much services will or should cost; consumers would like this same information or resource in order to make their planning and decision making easier.

Collective involvement. Organisational participants felt that the planning needed to be located in communities. Further they felt it was essential to use existing networks and natural resources to plan. Further, they felt it was important to increase the number of group homes,group services, connecting services so that organisations could overcome some of the challenges around sustainability (especially for small NGOs which receive little funding and may not be able to transition to this new model successfully). Some organisational participants also spoke about the importance of organisations pooling resources to support each other. They felt this would help people to make choices and manage/make the most use of their money collectively. Other organisational participants were in favour of developing service partnerships in which smaller or larger organisations join together and collaborate to provide services. This may help them tailor services specifically to receive or work with this funding scheme. Other organisational participants felt that they needed to build partnership between government and community services. They felt that shared responsibility between the organisations and the government was essential to the effectiveness of the scheme. Both organisations and government need an open minded approach in order to facilitate the transition to this new system-need to be accessible and willing to assist the organisations, rather than being caught in red tape.

Monitoring/Safeguards needed. Organisations are concerned about what types of safeguards will be in place to ensure money is accounted for (not lost) and that the planning processes are monitored.

Information is needed . Organisations need information about eligibility criteria and how to handle clients with multiple health issues/ diagnoses. Specifically, organisations would like to know how consumers with multiple health issues will be managed under the new scheme. Ongoing information on the scheme is required for both organisations and consumers, to keep everyone in the loop. Some forward planning in this regard is also important so organisations and consumers know what to expect. This information should be easily accessible and up-to- date. Perhaps on the web.

Staff resources are need. Organisations need additional staff to operate under the new scheme. Some organisation will need to recruit additional staff to manage the NDIS funding scheme clients as existing staff have their caseloads. This will be a challenge for

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organisations- need to know how much funding they will get, what qualifications staff need. In addition, organisational participants felt that training of existing staff is needed. Staff needs to be trained to assist with the transition and to get the entire team involved.

Building relationships. Organisations feel that they need to work on strengthening their relationship with clients. Perhaps not just building but also fostering and making these relationships the focus of the care and the services that they provide; this is seen as the key to working well with clients (gaining their trust, or maintaining their trust if existing client). One organisational participant even mentioned the idea of consumer led recruitment-organisations will need to start thinking about how best to integrate consumers into the process of recruiting the right staff to provide the services needed within the organisation.

Need resources to assist consumers. Organisations recommended increasing resources to organisations to help their clients. For example, additional software (may need iPads too for external work) to be able to cope with the additional demands of managing client money and helping them to plan and review- this will add to the complexity of case management so new resources will be needed to assist with this. Also, the right systems and infrastructure need to be in place to assist organisations. They would like more resources to help them to help the consumer (also including guide as to fees and charges, streamlining the processes for consumers, taking into account the complexity of the consumer and how these services fit in with that).

Organisations will need help shifting their core values. The new scheme requires a shift in philosophy or approach- organisations will need to make a philosophical or ‘mind shift’ in terms of how they interact and interface with both consumers and the government, as well as how they frame the services they provide and their role in this scheme. Training is required to help organisations and their staff to make a philosophical or framework shift.

Transport infrastructure needed. Both organisational and consumer participants mentioned their concerns that the transportation infrastructure in Australia is not suited to the new scheme. In comparison to the UK (where this type of system has been successful) we do not have the same type of transport system to facilitate the process (travel is also very expensive so that too is a concern).

Education needed. It is essential to educate consumers about what services are provided, the quality and competence of staff, and how to manage money. This is especially concerning to organisations that fear subcontractors will reduce their business and provide lower quality services for consumers.

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