Anglicare Sydney Submission to the NDIS

Inquiry – General Implementation and Operation of the NDIS

June 2018

1. Overview of Anglicare Sydney

Anglicare Sydney is a not-for-profit organisation of the Anglican Church and one of the largest Christian community service organisations in Australia. Anglicare Sydney formed on 1 July 2016 by the merger of the Anglican Home Mission Society (trading as Anglicare) and Anglican Retirement Villages. Anglicare Sydney exists to serve people in need in our community, enrich lives, and share the love of Jesus. We respect and value every person as made in the image of the living God. We seek to serve those who are ageing, vulnerable or marginalised by meeting their material, physical, emotional, social and spiritual needs. In partnership with parishes and others, we provide a range of services that promote dignity, safety, participation and wellbeing for people in their relationships, homes and communities.

We operate a wide range of community and aged care programs across the Sydney Metropolitan, Illawarra and Shoalhaven regions of New South Wales and as of 1 July this will include Anglicare Northern inland as a result of a merger. Our 3,900 staff and more than 3,000 volunteers operate across a diverse range of community services including: aged care both through residential and community services; retirement village living; services for migrants and refugees, post separation mediation services, counselling and family support services (carer support services; mental health support; youth services; emergency relief for people in crisis; foster care and adoption for children; social and affordable housing; opportunity shops providing low-cost clothing; emergency management in times of natural disaster; and chaplains in hospitals, prisons and mental health facilities.

Anglicare Sydney is currently funded to deliver two Personal Helpers and Mentors Programs (PHaMS) in the Eastern Suburbs: The Maroubra/La Perouse PHaMS Program and The Randwick/Kingsford PHaMS Program until June 2019. In July 2017, we began transitioning PHaMs participants into the NDIS. This process is still underway, with 41.5% of Anglicare participants now under an NDIS package. Anglicare is also a consortium partner in The Haven project. The Haven provides support for families caring for a family member with a mental health issue or autism, Areas covered include the Camden, Campbelltown, Wollondilly and Wingecarribee LGA’s. This project has been approved to work directly with carers over the next twelve months to pre-plan for NDIS participation.

2. Key Points

Anglicare Sydney welcomes the opportunity to contribute to this inquiry. We are currently in the early stages of NDIS implementation, with 41.5% of our PHAMs participants now receiving an NDIS package. It has been a period characterised by both successes and challenges for both our staff and participants. Our Staff have worked closely alongside participants and allied health professionals to ensure our PHaMs participants have experienced a smooth transition into the Scheme. In order to do so, staff have had to increase client contact hours as well as provide NDIS education and close guidance to allied health professionals involved in providing evidence of psychosocial disability.

For transitions still underway, Anglicare notes that this has been time and resource intensive, particularly in the applications, appeals and planning which are discussed in further detail throughout this submission. Despite these efforts, we foresee still having a significant number of PHaMs participants in our program by the end of June 2018. These participants may be awaiting the outcome of their NDIS applications or be in the process of appealing their application outcome. Should our funding be reduced in July 2018 by the amount stated in our funding agreement, our

PHaMs staff would not be able to continue supporting all the remaining PhaMs participants until their packages are approved.

The NDIA pricing structure has proven to be one of Anglicare’s largest challenges. Whilst we welcome the measures to review the pricing structure of the NDIS, we express concerns with the current non-contextual pricing structure and its implications for quality workforce development and continuing care.

Concerns also remain regarding the NDIS model for people with a psychosocial disability who are eligible for the NDIS. Anglicare Sydney and its network members have consistently demonstrated the value of an evidence base recovery model. However, from the commencement of contact between a participant and the NDIA, a discretionary nature is presented throughout the application process. Participants are asked to focus on their functional limitations; this opposes the strength-based model that we continually implement at Anglicare. Plans that are provided, then reflect on the participant’s functional limitations and provide most of its funds into maintenance based supports (core). Feedback from LACs informed us that strength-based Capacity Building funding is unlikely to be provided in future plans, therefore limiting the amount of strength-based recovery.

Anglicare’s suggestion to the aforementioned challenges would be to provide additional application support for people with a psychosocial disability, a different pricing scale to account for the complexity of mental health and the level of staffing required, provision of block funding and greater access to positive and measurable outcomes that are associated with recovery oriented models.

Anglicare is committed to working with the sector, especially GPs, health providers and local area coordinators in the ongoing implementation of the NDIS as together we seek to improve outcomes for NDIS participants. We seek to provide suggestions within this submission that can support the transfer and exchange of skills and knowledge between NDIS stakeholders to achieve good practice in the sector and ultimately, an improved experience for participants regardless of what stage of the process they are in.

This submission also incorporates carers perspectives of the NDIS, presented during Anglicare’s recent Carers Consultation in June 2018. A common theme to emerge, and one affecting both carers and direct recipients of the NDIS, is the lack of understanding NDIS providers display in dealing with people with a psychosocial disability. This issue is addressed throughout the submission. Carers also expressed specific issues carers face in their caring roles including:

GPs, mental health workers and hospitals often do not provide adequate information on the NDIS to the people they are caring for and the carers. Many carers have regular interactions with medical and health practitioners, including hospitals and limited information on the NDIS is provided.
Ensuring that the carers engaging with the NDIS are provided with information and supports in person at various points in the carers journey (over 90% of carers indicated preference for face to face versus digital) and access to information acknowledges that many carers do not have the time or resources needed to navigate on line platforms and systems.
Having opportunities to increase carers knowledge of the NDIS in ways that equip carers with the ‘right language and right questions’ to ask medical and other services that carers come into contact in their caring role.

Regarding eligibility, it has been observed that there is a disconnect between the Disability Support Pension and the NDIS. Many individuals who have provided proof of functional limitations and assessed as eligible for the Disability Support Pension have been found not eligible for NDIS. This has resulted in a great deal of inefficiency as additional support has been required to follow up similar evidence for re-submission to the NDIS.

3. Access to the Scheme

Despite our efforts to transition participants into the NDIS Scheme, Anglicare still has over 35% of participants who are not yet accessing the Scheme. The Department of Social services advised that those participants who chose not to apply to the NDIS (due to age and/or personal choice) be exited from the PHaMs program by December 2017. Through this action, 82 participants remained in January 2018. Between January 2018 and May 2018, the following has been actioned:

41.5% of Participants have been deemed eligible for the NDIS,
23.2% of Participants have been exited from PHaMs due to ineligibility,
35.5% of Participants are still in the process of transitioning to the NDIS.

The 28 days allowed for gathering all the evidence is not sufficient. Gathering evidence required for application can take up to 22 hours of work over a 4-month period - work that is currently unfunded. If the progress continues in the current speed, we foresee still having a significant number of PHaMs participants in our program by the end of June 2018. Many of these are awaiting the outcome of their NDIS applications or are in the process of appealing their application outcome.

Due to our participants’ mental health challenges and times of being acutely unwell, not all of our participants have been able to participate in the application process consistently. Periods of hospital admissions or deterioration in their mental health conditions have resulted in a delay of gathering evidence for applications. People with little or low evidence are finding they are ineligible under current scheme (see point below).

Anglicare recommends that a block funding model will better support people to make the right connections, make the right appointments, and ultimately increase the ability of people to access to the scheme in an efficient and positive way.

Our experience shows that GPs and psychiatrists have limited knowledge of the NDIS, do not understand how the NDIS is accessible to people with a psychosocial disability nor understand what is required in an application. When GPs and psychiatrists have been asked to provide letters of support and complete application forms, details are often scant and not aligned to the NDIS criteria provided in the template. Some health care providers have refused to provide evidence.

Anglicare’s experience also mirrors the Victorian Story: Mind the Gap1 in finding that assessors, including GPs often lack knowledge on the fluctuating nature of a psychosocial disability, reporting that GPs ‘lack of insight into the reality that there were likely to be meeting with a person at a time and on a day that the person was likely to engage …thus judgements (are) made from an in-the- moment opinion rather than being informed by a longitudinal lens’. This example, in our experience is particularly pertinent to Aboriginal and Torres Strait Islander & other vulnerable groups who are attempting to engage with the NDIS where ’there is lots of bureaucracy for them to contend with. To be deemed eligible, people need to present at their doctor on the day they are experiencing the ‘hardest time’. This prohibits people from engaging with the Scheme.’ Anglicare are concerned that vulnerable groups with a psychosocial disability may be lost within the new system.

Case Study 1 – Practitioners experience: barriers in the application process and complexity of evidence gathering

Participants with complex mental health issues have found difficulty in meeting the access criteria for the NDIS if they do not have comprehensive clinical supports. One case example is participant X who had diagnosis of Bipolar disorder, Anxiety, Borderline traits and has a history of complex trauma. Participant X has had a history of homelessness and unstable drug use, but now stable on methadone and in public housing. The participant also has a history of suicide attempts. The participants clinical supports before engaging with PHaMS were a GP and a drug and alcohol service. The participant was referred to a Psychologist and Psychiatrist. Unfortunately, after waiting several months to get in to the psychiatrist, they advised after initial consultation that they were unable to offer treatment. The participant had a previous referral to psychiatrist who also declined treatment due to complexity. The participant was able to engage with a psychologist and they agreed to provide NDIS evidence after the participants attended several appointments. Due to the nature of their illness and chaotic lifestyle the participant finds attending appointment very difficult. It took several months, but the participant engaged with the psychologist with transport assistance from PHaMs. Eventually the participant submitted an NDIS application with a letter from the GP, Psychologist, Drug and Alcohol Service, PHaMs and records from hospital stays. This application was declined and now considering an appeal. It is clear that there is a barrier for participants in accessing the NDIS if they find it difficult to engage with medical supports, because of the nature and severity of their mental illness.

4. Eligibility Criteria

Anglicare’s participants have been assessed as ineligible by NDIA due to:

the inability of the participant to collect the extensive level of evidence required
extreme complexity of the application process
limited understanding of NDIS requirements by GPs and other evidence providers
unfair and inequitable assessment process stemming from assessor’s lack of understanding of psychosocial disability
the fluctuating nature of psychosocial disability
denial of face-to-face assessment
lack of adequate support and advocacy at time of assessment

1 Hancock, N., Bresnan, A., Smith-Merry, J., Gilroy, J., Yen. I., & Llewellyn, G. (2018). NDIS and Psychosocial disability – the Victorian Story: Insights and Policy Recommendations from Expert Stakeholders. Report prepared for Psychiatric Disability Services of Victoria and SalvoConnect.

23-35% of our participant’ applications have not been approved on the grounds that they do not meet the severe functional limitations requirement. People with a psychosocial illness cannot always articulate how their illness is affecting their day to day lives. This is because they have lived with it all their life and don’t always know they are not functioning. When they go to the doctor for a support letter, they are often deemed ineligible and functional’. (NDIS Practitioner, May 2018)

If a participant’s access is not met it is likely that their current levels of support will cease and it can participants functioning will worsen, thus needing to reapply for the NDIS, without advocacy supports in place. Staff have been assisting participants whose access is not met by appealing the NDIA decision to avoid this happening. In order to appeal, staff are having to attend several appointments with participants in order to generate more evidence of functional limitations. Once the appeal has been submitted, it can be a 3-6 month wait for the outcome of the appeal to be finalised.

For people who do not meet the criteria for NDIS packages, we remain concerned that they will be without services. Whilst we are yet to be subjected to the full impact on the wellbeing of non- eligible NDIS participants, we continue to hold concern due to the reduction of services; however, we will continue to advocate for the need for block funding to support this particular cohort into the future.

5. Planning

At present, Anglicare’s experience with the planning cycle presents challenges for a person first engaging with the Scheme and extends through to plan reviews and servicing of plans for those who are successful in gaining a package. We note that some of these challenges relate to the current Pricing model and this will be addressed in further detail in the section on Pricing below. We do however acknowledge that for many of our participants, NDIS funding has increased their level of face to face support and on some accounts participants are reporting improved wellbeing and increased capability of carrying out daily tasks. Previously, the PHaMs program provided up to 3 hours of face to face support a week; currently, we are experiencing that this level of support has increased to between 4-8 hours of face to face support for many NDIS participants.

Examples of challenges and, where possible, suggestions for improving the planning processes are outlined in further detail below:

Providing education and upskilling to NDIS planners remains a priority for Anglicare and will support the development of high quality plans. Anglicare Sydney recommends specialised training for planning teams working with people with a psychosocial disability to enhance the skills and knowledge of the specific nature of the disability. Good pre-planning could be further enhanced through training for GPS and other stakeholders to ensure the language and criteria within the plan templates are understood and aligned to the supporting documentation required for the submission of applications. This will improve the submission process, reduce time delays and ultimately support more effective and efficient ongoing planning responses.
Anglicare is also providing educative sessions to relevant stakeholders, alongside the provision on regular and ongoing information on the NDIS to health care providers to support pre- planning processes, such as applications.

There is currently no capacity to move funding between the different categories of Core Support and Capacity, resulting in ill- fitting, rigid and inflexible plans. Our experience shows that plans then do not align with the needs of aspirations of those living with psychosocial disability. Of concern, is the reduction in services for people exhibiting small levels of improvement within their capacity building plan. There seems to be little incentive to improve function when the result is a loss of services. Plans need to provide greater flexibility and be more responsiveness to the episodic nature of a psychosocial disability.
Scheme participants are often not aware of their rights and options, such as being able to have an advocate present during the planning meeting. In our experience, the absence of an advocate has resulted in people not knowing that they can request support coordination in their plan. This experience has been further compounded by LACS not always providing the support connections, leading to underutilised plans and overwhelmed NDIS participants.
A second meeting between the participant, LAC and advocate to review a draft plan prior to implementation would allow participants to reflect and refine plans that suit their needs; this could potentially remove the need for unscheduled reviews.
Lack of service providers to ‘action’ a plan – reflective of pricing structure, ie lots of core support available but not a lot of service providers that are financially able to provide high quality care with in the pricing benchmark.
Time delays when plans need to be amended or reviewed. – When changing circumstances are identified in a plan, it is taking between 2-4 months to get a review of the plan.
Releasing funds via the portal when a participant chooses to change service provides takes 2 weeks to process. For psychosocial disabilities, any length of time without supports can be very detrimental to individuals and cause confusion.

Case Study 2 – Insufficient planning and unscheduled reviews

Participant Y submitted an NDIS application in February, presenting with comorbid diagnoses of schizophrenia, depression, anxiety and deafness. Participant Y’s primary diagnosis was declared by a doctor as schizophrenia and secondary disabilities include deafness, anxiety, and depression. The participant’s mental health disability (schizophrenia) was assessed as the primary disability as it permanent, ongoing and impacts her daily living significantly. However, when the participant received her NDIS plan; the disabilities that were confirmed stated her hearing impairment was the primary disability and schizophrenia the secondary disability.

This information was not correct nor did it reflect her ongoing challenges resulting from living with schizophrenia. As a consequence, the participant was denied funding for support coordination and her funding did not adequately reflect the mental health challenges she experiences. The participant disclosed that because of this she cannot use her NDIS plan. She reported that this decision has negatively impacted her mental health and that she is overwhelmed by the process. Anglicare spoke to the NDIA who reported that the plan’s disabilities were automatically swapped as the NDIS was initially ‘physical disability focused’, admitting they were wrong in their assessment, however required further evidence to resolve the issue.

The participant received a plan that did not include support coordination, and totaled $12,213. Due to her mental health challenges, the participant was unable to access services (without support coordination) or advocate for a review. Anglicare PHaMs assisted her with the process, spending 2-3 unbilled hours initially and proving ongoing support between March and June (approx. 35 hours). This support included weekly phone contact to the NDIA and the participant, completion of a change of circumstance form and review form and support letter from the GP and Anglicare confirming the participants’ disabilities. The participant became

quite unwell as a result of the NDIS’s decision and she could not access support besides PHaMs. The Anglicare practitioner had to also write a complaint letter to the NDIS as her audiologist had incorrectly accessed her plan reiterating again that she required support coordination moving forward. Anglicare was finally able to get her review escalated after waiting since late March and her plan was approved. The participants plan was increased to support her mental health to $64,278.19 and included support coordination. The participant has now received capacity building and therapeutic support as a result of this.

If Anglicare PHaMs did not support the participant through this process the participant would have had a plan that could not be accessed therefore void.

6. Communication

6.1 Between Anglicare and the NDIA

Access to information on the Scheme that is accessible, timely and easy to understand is essential in driving provider performance and effectively support NDIS participants. Anglicare continues to experience lengthy delays when contacting the 1800 NDIA number. The caller does not receive an option to leave a message or request a call back. On the occasions we have successfully connected to an NDIA call centre to ask a specific question, the operator has been unable to provide an answer; alternatively, we receive conflicting answers from different operators. Despite the operator offering to have someone follow up, this has never happened in our experience with the call centre. Also, when applications are submitted to the NDIS, there is limited communication between the Agency and provider regarding processing timeframes.

Anglicare’ suggests that communications between the NDIA and service providers could be improved by drawing upon examples used in other large programs, including:

establishment of grant manager type function within the NDIA who act as a consistent liaison point for service providers to support timely and useful information provision and sharing
Appointment of regionally based, suitably qualified NDIA workers that understand the region/communities in which the Scheme operates, help to link service providers into the ‘right networks’ and build sector and community awareness of the NDIS.

6.2 Between Anglicare and other NDIS service and evidence providers

Practitioners working within Anglicare’s PHaMS program have worked hard to communicate information on the NDIS to health care providers, including GPs. Whilst Anglicare views this role and function important, this is a resource intensive task for the practitioner and our experience highlights that even when information is communicated, it is not always acted upon.

We acknowledge that as a sector, we are constantly (and quickly) building our knowledge of the Scheme and our roles and responsibilities within it. Equipping key workers, such as NDIS planners and LACS with the knowledge and skills when working with psychosocial disability, in our view is an area that requires further development. For example, planning meetings for participants with a psychosocial disability would ideally be facilitated by LACS and planner who are skilled in mental health and participant engagement.

7. Quality

Anglicare welcomes the recent announcement of the NDIS practice standards by NDIS commission which will be implemented as of 1st of July for service providers. However there remains concerns that non-registered providers do not have the same accountabilities as registered providers. Whilst registered organisations such as Anglicare must comply with TPV registrations, strong governance structures and demonstrate expertise, non-registered organisations do not.

The Scheme’s orientation to a business/user choice model does not support the provision of successful, evidence based and recovery oriented models. In a competitive market with participants experiencing significant and fluctuating mental health issues, there is a requirement on the part of the practitioner to challenge the participant to identify their issues and how to manage them using a person-centred model of practise. Professionals need to ask to challenging questions to promote change behaviours. Anglicare is concerned that in the NDIS business model, participants will not be challenged due to the risk of loss of potential business which loses the therapeutic interventions of support for participants.

Quality of care is impacted by a prescribed ‘staffing mix’ that sits within a constrained pricing guide. This means Anglicare’s recruitment and retention strategies are determined by a set pricing guide, not in response to the complex needs of our participant groups. For example, it is hard to get quality staff when we have to provide a level of participant support that fits within a benchmarked cost, a cost that does not sufficiently enable the delivery of quality care for people with a psychosocial disability.

In addition, the frontline work now consists predominantly of Core Support which includes assisting participants to access the community (accessing appointments, grocery shopping, visiting new local areas etc), building skills (learning to use public transport, develop routine etc) and/or improving their living environment (de-cluttering, cleaning routine etc). This category of work varies from the recovery based work that allowed our case managers to focus on specific participant goals and aspirations and working alongside them to achieve quality and meaningful outcomes.

‘Staff have had to adjust to a more prescriptive model of working with individuals and allocate challenges accordingly. For example, if a staff member is contracted to assist a participant with their grocery shopping, the flexibility here is limited. If the participant discloses during the appointment that they would like to build their employment skills, the case worker would need to contact the support coordinator or NDIA to see if this is a possibility and then allocate a different scheduled time and/or worker. Differently to the PHaMs program, where this could be easily fitted into the next appointment time’. (Anglicare Practitioner’s account, June 2018).

Anglicare are well underway in planning a service model that is not only reflective of our indicative NDIS income, but one that will support a high-quality service delivery model and workforce. Staff with social work degrees and/or relevant qualifications can provide therapeutic supports under the capacity building category of funding. Furthermore, staff are being transitioned to also become support coordinators. A casual workforce is being introduced with Case Workers and Support Workers to account for the increase in support hours, changes in staffing model and ultimately contribute to a high-quality service.

We can only employ staff for the hours they are funded for, yet we know that supervision, de-briefing and support for staff working in complex settings is essential for good practice and can support continuous improvement processes, delivery of quality of care, and in the longer term contribute a safe and sustainable workforce.

The lack of financial support provided to the development of a strong peer workforce and potential misuse of this workforce, can also impact on the quality of NDIS services. Research indicates that the peer workforce is an effective way to support people with a mental illness (REF), and as specialist workers they need to be renumerated and valued for the expertise they bring to the service. We have heard of instances where the peer workforce has been a cost filling gap or taken advantage of to fill a NDIA costing gap.

Anglicare understands the value of the lived experience and is committed to the development of a strong peer workforce to support our ongoing NDIS work. We do however note, that there is an extra duty of care and associated financial costs to the provider to support this workforce to be successful and provide quality outcomes for participants.

8. Pricing structure

Anglicare implementation experience highlights inadequacies in the current pricing structure. This Pricing guide sets the baseline for response to supporting our valued participants. When working with the NDIA pricing guide we have to provide staff that work within the costing constraints of the price guide. This is difficult and devalues the expertise of the workforce as there is not the funds in the costing to pay the staff needed to respond to the needs of the complexities of people with a psychosocial disability.

At an operational level, our experience to date demonstrates that we need increased operational funding to run a NDIS service. Whilst the mobility and outreach nature of the program is vital in meeting participant needs, it is not a mobile program and cannot be delivered by purely a mobile workforce. Without some form of block funding to be able to on board participants and provide the infrastructure and supports for a professional work force, the NDIS is unsustainable.

Anglicare is concerned that the comparatively low standard support rate of approximately $42.79/p/hour is significantly less than the majority of social service staff contracts currently being provided. Anglicare believes that this will lead to an over-reliance on casualised staffing which will reduce the quality of service provision and lead to an underqualified and unsustainable workforce. We are concerned that this will impact an organisations ability to invest time, training, de-briefing, supervision and support in staff. Such support is a vital duty of care to staff working in the field of complex mental health. Recruiting a skilled workforce is difficult when wages are by necessity so low as a result of the current pricing structure

The NDIS pricing structure assumes that the majority of income is spent on participant core supports (typically over 80% of the total package), however our experience indicates that core supports should be a smaller proportion allowing for an increase in capacity building / recovery supports. The current proportional funds have resulted in a low average hourly income rate.

The low pricing structure allows for very little investment in infrastructure, including digital and physical, vehicles and office based staff. There is almost no allowance for a service to pay for a vehicle (and running costs), a phone (and costs) for staff safety, computers, office infrastructure, a manager (to provide de-briefing, supervision and back up support for times of crisis), office rent, electricity and more requirements for running a quality service.

Although therapeutic line items are paid at more sustainable rates the value-added therapy assistant at $41.71 p/hr is unsustainably low. A reduced pricing gap between these support types (reduced therapeutic and increased assistant rates) would enable a more balanced, dual pronged approach and better outcomes.

Anglicare has determined that an income of $67.00 p/hr would allow for the above expenses to be reasonably provided however the focus on lower priced Core items will likely result in organisations continuing to turn away these types of support as they are financially unviable. Organisations may consider the average hourly rate and offer a suite of supports that include a mix of Core and Capacity Building in order to maintain viability. This would require a greater proportion of Capacity Building supports in order to bring the average hourly income up to the $67.00 p/hr mark.

NDIS pricing allows little flexibility regarding the episodic nature of psychosocial disability. A participant with regular maintenance supports in place (Core) has little flexibility to temporarily increase supports during a time of increased symptoms/ reduced wellness. A block funded model was able to provide this flexibility however under NDIS the package funds are stagnant for a 12-month period.

A NDIS participant with chronic health issues who requires a full time carer has received a plan that is insufficient for her needs. One of her goals was to access respite to give her and her carer a break from each other. This goal was included in the plan however there were not enough funds to cover more than one respite period (usually require minimum of 2 weeks at any one time in a respite facility) and expected to cost approximately $10000 due to her complex needs. If she uses her core supports for this, it leaves her with very little funds to access the other core supports she requires on a daily basis such as access to community, support at home and self-care support. It has been disappointing for her that she is unable to work towards goals considering how minimal her support package is.

CONCLUDING STATEMENT

Anglicare Sydney appreciates this opportunity to contribute to the NDIS Inquiry – General Implementation and Operation of the NDIS.

Glenda Devlin

General Manager – Community Services