Submission 72 — Challenge Community Services — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition | External submission

Challenge Community Services submission to the Joint Standing Committee

on the NDIS’s Inquiry into ‘The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition’

About the Challenge Community Services

CCS is a large Not For Profit NGO servicing significant parts of NSW providing Disability services, Out of Homecare services and Clinical Services. It is actively involved in the provision of NDIS services and is a PIR (Partners In Recovery) provider in the New England PIR Consortium.

Challenge Community Services is committed to the NDIS. The NDIS in the broader disability sector promises to empower participants and enliven the Disability Sector. However the rollout of the NDIS into the Mental Health sector under the banner of Psychosocial Disabilities requires adjustment if it is to be a successful program maximizing outcomes for the participants.

Our recommendations to a more successful NDIS program delivery of the NDIS into the Psychosocial Disability sector focus on the impact on participants, of the new model within the sector, and on the processes underpinning the NDIS and its delivery.

It’s important to take into account the contexts and the nature of the people and systems being impacted. For example, the episodic nature of mental illnesses, even where they are permanent and lifelong is an important consideration. A clearer comprehension among the NDIA staff and the LAC’s about the nature of mental illnesses as disability, but also as to how such disabilities interact with other issues and co morbid conditions.

The absolute necessity for interagency cooperation where agencies are focused on the needs and goals of their shared clients if the best outcomes are to be achieved- particularly where the shared client has complex needs that impact and are impacted by a mental illness.

And finally, the nature of NDIS funding arrangements and how these impact not only on service viability and how they skew the service delivery models of various agencies.

Summary of Recommendations:

Recommendation 1: That the NDIA clarifies its access criteria around functional impact and diagnosis.

Recommendation 2: That the NDIA reconsiders its processing of applicants with complex needs linked to a mental illness, so that co morbid and linked issues can be fully taken into consideration when processing application and plans.

Recommendation 4: That assumptions about NDIS viability be adjusted to take into account the limitations of servicing rural and remote centres and the needs of participants in these locales. This is an equity issue.

Recommendation 5: Clarify the ILC program delivery. Consult with the sector once clarified and link roll out with the PHAMs, PIR and D2DL programs transition to the NDIS.

Recommendation 6: NDIA staff and LAC’s should be trained in planning interview processes with clients with psychosocial disorders. The process itself should be flexible enough to alow use of written support materials or discreet interviews with supporting agencies.

Recommendation 7: Projected funding for the NDIS should be carefully incised from the political process. It should also take into account positive economic impacts at local levels.

Recommendation 8: ILC roll out should include provision for outreach to potential applicants whose geographic, social or personal isolation precludes them from positive interactions and assistance from the NDIS or other sectors.

Recommendation 9: A cohesive strategy should be trialled and developed with intergovernmental Capacity to develop cohesive pathways for forensic clients. (This should also include the SHS and Housiong sectors)

Recommendation 10: Review of the NDIS Price guide with a direct consideration of allowing for competition whilst enabling cooperation. An understanding that coercion to cooperation is neither effective nor realistic.

Terms of Reference:

A: the eligibility criteria for the NDIS for people with a psychosocial disability; There appears to be a lack of clarity and consistency in the way that psycho social disorders are being managed under the NDIA. Stories of applicants being refused based not on their psycho social disability but on diagnosis stand against earlier statements that the focus was not to be on the applicant’s diagnosis but on the actual disability. Our understanding is that the diagnosis itself should not be the criteria for acceptance under the NDIS but the elements of permanence of the disability and the level of functional impairment impacting the applicant’s life are the driving criteria.

For Example: Challenge PIR has experience of a joint PHAMS/ PIR client refused NDIS (granted on review) on the basis that his military conflict induced PTSD was a “curable” condition. Despite a swathe of submitted evidence that he had endured this condition since the early 1970’s he was refused based on the diagnosis. A review was requested and the review granted access based on the permanent disability. The initial refusal had to be managed carefully as it represented a likely trigger to another depressive episode.

Prioritizing of disabilities has a tendency to obfuscation of the reality and doesn’t take into account the complex situations experienced by applicants with Psycho Social disorders. Responses by the NDIA indicate that secondary disorders are either disregarded or are deemed as far less significant. This doesn’t reflect the real experiences of people with these issues. The primary disorder nominated in the ARF (Access Request Form) is often only marginally in a priority position and this marginal placement might be a subjective judgement. Co Morbid disorders in this space are often regarded most effectively as being of equal note and treatment or management should be concurrent. They are not easily ranked in order of priority and the requirement of the ARF that they are ranked, and the outcome of that ranking is problematic and not representative of the circumstances of people with psycho social disabilities.

For example; Garry a 39 year Old man with a significant Psychotic disorder compounded by Depression and ongoing lower back pain and a mobility disability would probably say that the Back Pain and lack of mobility is his most pressing disability. His PIR worker, engaged to coordinate services and focusing on his mental health issues might argue that the Psychosis is primary but his GP might, at certain times, argue that the depression is most significant as it is occasioned by suicidal ideation. All would be and are, surprised to find that the primary disability nominated in the Access Request Form is focused on at the expense of the others.

Recommendation 1: That the NDIA clarifies its access criteria around functional impact and diagnosis.

B: the transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular;

i. whether these services will continue to be provided for people deemed ineligible for the NDIS;

This question points to the so called Tier 2 clients or ILC cohort and represents between 60-80% of PHAMS clients. Up to the roll out of the NDIS this target group was well serviced and effectively assisted by PHAMS. They were also around 20-40% or PIR clients. The service delivery by PHAMS/ PIR to this group is intensive but evaluations and reports indicate these program’s effectiveness. PHAMS/ PIR have been integral parts of the service sector since their inception. There is no existing model to step into the PHAMS/PIR space to assist this target group and the disruption wrought by the NDIS on many PHAMS/PIR services has been a decimation of staff and thus a complete disruption to services to this group. Eg: Most PHAMS in the Hunter New England region have had to reduce staff from teams of five or six to two staff.

This disruption means that as these clients are exited they will not be able to access any assistance beyond seeking Medicare funded psychological assistance. The effectiveness of PHAMS assistance was always that it worked holistically with the participants and integrated their services with clinicians. The assumption that this can be removed and only clinical services are required flies in the face of the experience of PHAMS and PIR and their participants.

The strangest anomaly in this situation is the apparent assumption that people with non permanent mental illnesses have lower needs. Their needs may not be life long, but for the duration of their term of illness, which may last years or may recur episodically for even longer, are often intense and debilitating. The recognized needs of this group that contributed to the creation of a solid NGO support and case work sector have not dissipated for this group. PHAMS and PIR have worked well and assisted thousands to remain active members of society or assisted them to re engage. A replacement model will need to match the numbers and the processes to obtain the outcomes being lost as PHAMS and PIR roll into the NDIS, otherwise the demands on the Mental Health system will increase and the Medicare Psychological care system will operate in a vacuum deprived of case management and support for this group. For example: Sally is a 22 year old woman assisted by both PHAMS and PIR, pre NDIS. Sally’s initial presentation to PIR was with profound depression compounded by anxiety and some suicidal ideation. She was a victim of Domestic Violence and issues re PTSD were being explored by her treating psychologist and her GP. PIR was ensuring communication between the GP and the psychologist and that PHAMS was assisting her to engage with her goals and with the community again. Both PHAMS and PIR worked with the SHS (Specialist Homelessness Service) initially to resolve the homelessness created by her escaping violence and then with the court system to return home and to exclude the perpetrator. The NDIA refuses Sally’s ARF as the disability is regarded as non permanent and related to the circumstances of the DV. However, the local PHAMS team is reduced to only two staff and her Key Worker has had to leave. PHAMS are now short of time and assistance is limited. Sally no longer feels as supported by PHAMS as they simply cannot afford the time to assist her. The PIR worker can spend some time with her as PIR transition is not quite as impacted yet. However the PIR SF has informed Sally that she will be exited as the NDIA rolls out further. The SHS has some capacity to take up the gaps created but they are under time pressure not only due to the demands of their daily work but also because the reduction of PIR and PHAMS has increased the burden on their staff. Sally will need to apply for more psychological assistance than previously as SHS staff are unable to assist her in the mental health space.

Recommendation 3: That the ILC program roll out be strongly linked to the scaled changes in PHAMS, D2DL and PIR funding with an absolute link to continuity of service provision and a clear consideration of the therapeutic impacts of system change at this level on active participants. The Unseen impact on the service sector: Interagency non cooperation. The nature of the NDIS is that of a shift to a business model driven by client choice. The outcome is that no services can operate that are not funded by clients and are directly linked to client service provision. Primary activities that will be no longer funded by the NDIS include:

(PIR and PHAMS) Involvement in interagency forums and meetings.

Activities designed to foster strong interagency relations.

Outreach to potential NDIS applicants with probable psycho social disorders where the disorder or situation isolates the potential applicant or they are isolated geographically. The reports from the Hunter and Western Australian experience in the trial sites reflects the experience of PIR, a service that has a mandate under its pre NDIS block funding arrangement to outreach to these clients, build relationships with them and link them to services. These reports average the time commitment to such work as being 20-24.5 hrs commitment prior to enrolling them with the NDIS. Once this funding has dissipated there will be no financial incentive nor capacity to outreach to isolate communities nor to develop the sorts of relationships which will assist a client group characterized by an inability to trust and easily develop healthy relationships.

C: the transition to the NDIS of all current long and short term mental health state and territory government funded services, and in particular; ii. whether these services will continue to be provided for people deemed ineligible for the NDIS;

Consideration needs to be made regarding the costing of NDIS services. Most agencies are making decisions regarding their service model focusing primarily on activities that attract the highest remuneration.

This means that there is a narrowing of service provision in line with the economics and not client need. Despite the claims that client need will now over ride either funding requirements or service delivery decisions, it appears that most services are electing to actively seek CoS and group delivery over client requirements and needs. The current experience is that agencies are moving into providing the activities in the Price Guide that yield the highest returns for service delivery. Coordination of Supports, group activities and some residential care models are preferred over face to face supports which return little for the cost of service delivery. Many agencies report that they cannot afford to commit experienced staff (who attract higher pay rates) to Support work. This flies in the face of the claim that participants will have a choice even of preferred staff.

The NDIS funding model creates a tight margin with no room for employee tenure, increased salary for training and length of service and thus is an incentive for movement to other sectors. We recognize that in larger centers with higher threshold populations, models can be employed that will allow for margins to be better managed. Drop In Centers with high volume attendance, for example, can be used to mitigate losses. However, these models do not translate to smaller rural centers with low threshold populations.

For example: Sharon lives with a Mental Illness (psychotic disorder), a physical disability and an Acquired Brain Injury in a small town around 60 km distance from two larger centers. Sharon has

significant behavioural issues linked directly to poor impulse control arising from her ABI and cojnfusion and emotional incoherence linked to her mental illness. She uses illicit substance to manage the pain from her physical disability. Sharon receives a significant package of supports under the NDIS but the services seeking to assist Sharon struggle to fill the packages. Issues around distance and local availability/ capacity preclude some services who have been assisting her for a long period under block funding models from providing further assistance and new providers step in but find they are poorly equipped to assist her spectrum of issues, in particular her behavioural problems. It takes several months to obtain a behaviouiral management plan, but the services involved are not able to provide sufficiently skilled staff (due to lowered cost margins and smaller available skill pool even in the larger centers). Local people are reluctant to become employed to assist the participant due to the client’s behaviour and the risks of sharing small community with her.

D: the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework; Given that there has been no details and varying information re ILC it is not possible to speak with authority about the ILC.

It can be noted however that this group (Tier 2) were well catered for under PHAMS, Day2Day living, and (to a lesser extent) PIR. These clients were assisted because their need was clear and often urgent. The replacement model is poorly funded compared to these models and lacks the holistic, relationship based model. It is hard to see how an equivalent job can be done and it is hard to fathom why this group should be neglected in this way. Untreated and poorly serviced they tend to represent a significant cost to the health system and to society.

It appears that ILC was more afterthought than a serious plan.

Recommendation 5: Clarify the ILC program delivery. Consult with the sector once clarified and link roll out with the PHAMs, PIR and D2DL programs transition to the NDIS.

E: the planning process for people with a psychosocial disability, and the role of primary health networks in that process; This has often been a distressing process. PHAMS and PIR both have a strong commitment to a strengths based recovery model. That is, they focus on the participant’s strengths and their potential. However the entire edifice of the NDIS is predicated on the disability and its impact. The motive might be recovery, however the approach is at odds with recovery and the approach is often threatening to the recovery journey. Having to recount and emphasise the disability, to describe the impacts of episodes and focus on limitations and inability in order to obtain funding is hardly conducive to recovery and is an active disincentive to move forward. Watching clients having to recount events of unwellness and in fact having to provide the LAC or the NDIA evidence of traumatic events run counter to the PIR/ PHAMS paradigm and places the client under unnecessary duress and impacts on trust and relationship building.

For Example: Danny is asked during her Planning meeting to explain what happened in her psychotic episodes in the past year that might link to her plan. Danny is unsure of what the Planner means and has poor

memory of the incidents in any case. She asks her support worker for assistance and the worker is then required to recount a number of embarrassing events, including police involvement and things said by Danny to her family that caused their current lack of support and distance. This results in another round of depression for Danny and concerns are raised for her well being while the NDIA decide how they might elect to assist her. She is in acute care when her package is announced.

F: whether spending on services for people with a psychosocial disability is in line with projections; The most alarming aspect of funding projections and discussions in Government are the indications that funding streams may be threatened by changes to Government policy or be limited in some other way.

On a positive note we wonder of there has been any analysis of the economic impacts of the NDIS into areas it has expanded into. The projected increase in employment and service activity has potential to offset losses in funding by increases in taxes and improvements in local economies. A solid analysis of the economic impacts of the NDIS to local and regional economies and employment participation might prove useful as a response to moves by Policy makers to change the NDIS funding structure.

Recommendation 7: Projected funding for the NDIS should be carefully incised from the political process. It should also take into account positive economic impacts at local levels.

G: the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability; and It is a function of PIR to actively seek out and assist clients who are socially and/ or geographically isolated. Under a full NDIS model this will not be an option. Someone with the considerable skills, funding and time required to build a relationship with these potential participants is highly unlikely. Travel funding to isolated communities is poorly funded and recognized as an issue. The time commitment to clients in this group is averaged at between 20 and 24.5 hours prior to the ARF submission. The more rural the service provider the less likely they will have the funded hours and capacity under the NDIS. The threshold population will either not exist or only exist if funding allows for significant travel commitments ( unlikely under the NDIS).

For Example: Horst lives in an isolated community some 90 km from the nearest regional town. Prior to the NDIS Horst would have eventually been referred by his GP or a visiting worker to PIR for assistance. The PIR SF (Support Facilitator) would have been available to travel the 2 hour journey to see Horst, maybe several times. Appointments would often have been hard to arrange as reception is patchy and Horst is wary of strangers, especially those that he might think of as “Government” even if they in fact work for an NGO. However the SF has both the capacity and the policy drive to spend the time engaging with this client and connecting him to support services. Horst requires an active and assertive engagement model to be assisted at even the most rudimentary level.

However, under the NDIS Horst will either have to come into acute care or some other crisis to be referred to PIR and follow ups will be less likely face to face but be by phone. No relationship nor trust can be created and Horst will remain outside the system despite his needs. Recommendation 8: ILC roll out should include provision for outreach to potential applicants whose geographic, social or personal isolation precludes them from positive interactions and assistance from the NDIS or other sectors.

H: the provision, and continuation of services for NDIS participants in receipt of forensic disability services; Movement in and out of the Correctional system whilst receiving NDIS assistance is thus far poorly tested. Experience thus far is that the Correctional system is poorly geared to integrate well with mainstream services, particularly those at distance from Correctional centers. Linking to agencies that will operate more as businesses than as community services cannot be regarded as likely to be effective or positive. Especially as the onus of linkages will fall to the Correctional system as agencies will be poorly or not funded to work on the interagency relationship. The existing agencies in the PHAMS/ PIR system usually have the capacity and linkages with Justice Health and the Correctional system. These are time consuming and require extra time and effort to adequately engage with these often opaque systems.

I: Any other relevant matters

The NDIS is deliberately arranged around a competition model. Some aspects of a competition model are attractive. The apparent empowerment of clients and a market driven move to service streamlining. However the artificial limitation created by the NDIS that limits this is the Price Schedule. Services are driven to focus on models that will achieve the best “bang for buck”. These are not in any way market driven but are prescribed by the NDIS and essentially push agencies into or out of provision based on whether or not they can recover enough costs to service, or for preference, grow their business/ agency. Thus the intent of creating a competitive environment for clients is compromised by the Price Schedule. The largely inadequate pricing further compromises the system with its potential to create a tiered system where one group of participants can work only with agencies working within the price schedule and the other comprised of those who are willing and able to pay extra for services. This may not appear to represent too much difficulty for some, after all, it is in sme ways how the system works now. However should the practice become widespread it may provide license for policy changes to insist that participants contribute out of their own funds and thus contribute to higher demands on their already low incomes.

Problems with the competition model The competition model is antithetical to the best practices in the Human services and community sectors, which emphasise cooperation and interagency relationships. Trust and cooperation are necessary to provide a working support network for clients with complex psycho social disorders. If agencies are forced to compete for work then cooperation will be eroded and trust will become a high premium, low presence commodity.

For example: Karen has been a PIR and PHAMS participant for several years. She has made significant recovery after an episode brought her into the Mental Health system and she was referred to PIR and PHAMS. She usually attended PHAMS groups and saw her key worker and PIR SF for one on one supports and

assistance. Her support package under the NDIS includes CoS, one on one delivery and Group attendance. She elects to place her CoS with PIR and the groupwork and one on one supports with PHAMS. However the PHAMS team inform her after a few months that they can no longer provide the one on one supports with her preferred worker as the package simply no longer covers the on costs of an experienced worker and she is offered a new worker (on a lower pay scale). She is not satisfied with this arrangement but it is the only option so she takes it. The groups however remain excellent for her needs. The relationship between PIR and PHAMS is challenged due to competition over the COS which is funded at nearly twice the pricing of Support work. PHAMS feel that they are now better placed to assist Sally with CoS as most of her assistance is now with them. Further, they cannot afford to send a worker to CoS meetings as they are not recompensed for attendance whereas PIR is covered for this activity. Sally’s supports continue but in a context now where both agencies consider they are better placed to deliver her assistance and Sally’s own needs are now only part of the focus of the interagency exchange.