Parliamentary Joint Standing Committee on the
National Disability Insurance Scheme
SEPTEMBER 6, 2019
KELMAX DISABILITY SERVICES
Level 2, 8 – 12 King Street, Rockdale, NSW
Our Organisation
Kelmax Disability Services provide Support Coordination and Specialist Support Coordination to
NDIS participants with multiple complex needs. We have eight Support Coordinators who have a high level of experience working within multiple systems, addressing systemic gaps and barriers, and supporting people with various complexities in their environment. Six of the coordinators meet the requirements in the Guide to Suitability to deliver Specialist Support Coordination.
Kelmax Disability Services also provide core supports and capacity building supports to NDIS participants, predominantly with people who identify as having a psychosocial disability. This submission is from the perspectives of the Support Coordinators and relates directly to the experience and observations made when working with vulnerable and at-risk participants.
Submission Introduction
The reason we decided to provide a submission is due to the consensus within the team that the
NDIS has not been appropriately adapted to cater for the needs of people with complex
psychosocial disabilities who have with additional complexities in their environments. These
people are continuing to fall through the gaps, there is ongoing disagreements between NDIS and other sectors to decide who is responsible to fund the person’s supports, and this bureaucracy is
having severe consequences on the people with disability, their families and communities.
Consistently we have found that Support Coordination is not appropriately funded for this group (this will be discussed further). We are providing level 2 coordination that, according to the ‘Guide to Suitability’ can be delivered by a Disability Support Worker with no experience working with people with complex needs. This is putting participants and others at risk of harm if a person who
does not have the level of experience and qualifications required is delivering Support
Coordination. In this paper we have made reference to:
- the experience, expertise and qualifications of planners;
- the ability of planners to understand and address complex needs; Including SIL;
- the reassessment process, including the incidence and impact of funding changes;
Exploring Complex Needs
Planners/ LACS who do not have experience working within multiple systems with people with severe mental illness should not be expected to undertake a planning meeting to appropriately
explore the needs of these participants. If they do not understand what is required in a
comprehensive and organic plan, they can be rigid with funding, leading workers to go in blind to
risk and this is putting a huge pressure on the disability workforce to provide supports in
dangerous situations with no appropriate clinical supervision to directly address behaviours of concern.
When reviewing NDIS plans, we have had experiences where the planning conversation is not adaptable and feels hostile. The expectation has been placed on the participant and / or their carers to use “NDIS-friendly” language to ensure the message is conveyed and appropriate funding is applied. They need to come into the meeting with an open mind and no preconceived ideas on psychosocial disability and a person’s support needs.
Due to many planners not feeling confident in engaging with someone with complex psychosocial disability the expectation for communication falls on other sectors and services to translate what
the person is requesting into NDIS language. Many therapists who work with people with mental illness take a Recovery Oriented approach and therefore articulating the persons needs and goals in a report does not align with the expectation of the NDIS, which results in not ticking the right boxes to secure appropriate funding. When a planner has the experience, expertise and skills to explore needs and provide a safe and open environment; a mutual respect is developed and there
are increased chances for capacity building internally and externally, increased trust by
participants and their carers, and decreased reviews, complaints and AAT tribunals. Recommendations:
• Developing resources that ensure the planner can explore the complex needs of the
participant, stream them into another pathway if required and fund their support needs
appropriately
• Basic feedback system - where everyone involved can provide feedback on the planning
meeting to collect data. With this it will be easier to identify training requirements and what type of disabilities planners may be suited to working with.
- Following interaction with a planner, there needs to be open forum for guardians, services, participants and their families to have open negotiation and communication around the
development and refinement of the initial plan.
-
Having specialist psychosocial planners, with planners being allocated these positions on multi-level systems, based on their experience, feedback and skills. The planners also need the skills to be able to interpret and explore clinical reports from the health and justice systems, which includes understanding risk factors and effects on disability support implementation and the relationships with functional capacity.
• Assessment / questionnaire / template for formal and informal network to support
comprehensive information gathering. This would also support capacity building of providers and other sectors to communicate with the NDIS
Allocation of Planners
There is a lack of transparency around why a person is either allocated to a LAC or a Planner. We have experienced on numerous occasions people with complex psychosocial disability with carers who are at risk of burn out being refused support coordination and allocated insufficient funding because they are assessed by a LAC and a Planner who overseer’s the LAC plans. The lack of suitable supports has repercussions for people, and often reviews are submitted due to the lack of understanding of the disability. There are many issues with LACS and Planners sensitivity to psychosocial disability an example we often come across is – planners telling people they will fully recover from treatment resistant schizophrenia. This is inappropriate and reflects in the plans with insufficient support based on assumptions as opposed to objectively considering the clinical evidence.
Some LACS and Planners refuse to allow the support coordinator to communicate on behalf of the participant/ whereas other refuse to speak to the person. Many of the participants who have a psychosocial disability, have significant distrust in government services and take months to years to build trust. The support coordinator often has spent months building this trust. These types of interactions have eroded trust in NDIS and put up further barriers when engaging with other services. Recommendations:
- Assessment process to allocate appropriate planner
-
When a person has a Public Guardian and / or Financial Trustee and Guardian, they should automatically be allocated a planner rather than a LAC
-
Participant with a Psychosocial disability to be allocated a planner rather than a LAC
-
Specialist planners be allocated to people with psychosocial disabilities and other complex needs Understanding Dynamic Factors and Other funding bodies Issue: A person with a Psychosocial disability and other complexities in their environment are often supported by various mainstream systems. There are multiple personal and systemic barriers that
prevent the participant being appropriately linked with mainstream services. Barriers for a
participant with a severe psychosocial disability are poorly understood and difficult to build a plan around. Personal barriers are often overlapping, intertwined, episodic, or dependant on the situation, which makes it more difficult to capture during the planning process.
There is limited flexibility during the planning process to capture dynamic factors surrounding a person’s disability, which considerably impacts on the funding outcome, resulting in insufficient support to meet the persons’ needs.
Not all planners understand the various systems and / or mental illness and therefore they simplify how funding, referrals and processes work - e.g. pushing for psychologists through PSS for someone with schizophrenia with severe effect on functional capacity. Funding to address barriers is often denied, citing section 34 (1) (c), which is an oversimplified and misguided understanding of systems, sectors and the co-ag agreement.
When systemic barriers are not considered during the planning process, these barriers are not addressed throughout the plan, then resulting in more severe consequences and increased support needs.
Recommendations:
• Developing consistent understanding and training on the co-ag agreement. Training for
planners to understand how to ensure NDIS meets their funding obligations to people with complex needs
-
Encourage problem solving and joint service provision ethos
-
Utilising resources such as the national complex needs alliance to develop new way of defining ‘complex needs’ and re-categorising streams so there are more levels / categories
-
Developing resources to explore the complex needs of the participant • Assessment / questionnaire / template for formal and informal network to support
comprehensive information gathering. This would also support capacity building of providers and other sectors
-
Specialised planners for psychosocial disability
-
Direct contact and ability to adjust funding quickly and easily when needed for participants at a certain level of complexity who are not linked with complex planners. When a review is rejected, there needs to be a process to immediately escalate to independent team with a faster turnaround time.
-
Quicker response from NDIA with urgent and crisis situations when there is a need for plan review
-
Collaborating with participant’s support networks prior to plan approval (for complex needs)
Participants in the Justice / Forensic Health System There are multiple attributing factors relating to the offending behaviour of a participant, which can be correlated with the person’s disability. Behaviours of concern are often referred to as ‘offending behaviour’ which ensures the responsibility of funding is placed on the Justice system; while Substance Abuse is placed on the responsibility of Health. However, the relationship between offending and / or substance abuse and the person’s disability is complex (Gregory, 2014).
People with psychosocial and intellectual disabilities have higher rates of substance abuse
compared to other groups and they often experience greater social (incarceration), physical and mental consequences due to the substance abuse (Chapman & Wu, 2012). Research indicates that people with a cognitive impairment combined with other disabilities and complexities have considerably higher offences, convictions and imprisonments than both single diagnosis and non diagnosis persons (Baldry, Dowse, & Clarence, Pathways to Prison for Mentally Ill and Cognitively Impaired Offenders Background Paper, 2010).
Our experience with NDIS has been that participants in this group are often underfunded,
compared to other participants who have not served custodial sentences and who have less complexities in their environment. This is partly due to the misunderstanding of their complex needs and the NDIS requirements to evidence this in a very rigid way to secure appropriate funding. There can be difficulty with evidencing this for this cohort, which can be a result of many factors, although some may include: Lack of appropriate documentation due to a long history of
service disengagement; Lack of decision-making support and advocacy; Lack of informal
supports; Complex relationship between cognitive impairments, substance abuse, mental illness, trauma and behaviours of concern; Refusing assessments; And history of chronic homelessness. By not capturing their support needs in the planning process, NDIS is continuing to disadvantage the participant.
NDIS are currently funding minimal supports when a person is in custody and often when they are in the Forensic Hospital (more recently). The funding may include minimal support coordination, sometimes as low as ten hours with no funding in other categories. We have experienced a person being released into homelessness with as little as 20 hours of Support Coordination funding. There is an over reliance on the Justice system to bridge the gap, despite the Co-ag outlining anything related to disability is more appropriately funded by the NDIA.
There is systemic discrimination in the justice system. Systemic responses and outcomes can vary greatly depending on factors such as – race, culture, community support available, gender, disability, socioeconomic status, and informal networks. It appears the NDIS are continuing to perpetuate this discrimination by determining funding based on whether the participants are serving a custodial sentence. We have observed a marked discrepancy in the funding people receive leaving custody/ forensic hospital compared with mainstream hospitals. Recommendations:
- NDIS being an active part of multi-agency protection planning instead debating which sector the funding responsibility sits with. Instead work as a team to overcome these issues (noted this depends on other sectors contributing)
-
Developing consistent understanding and training on the Co-ag agreement across NDIS. Training for the purpose of ensuring NDIS meets their funding obligations to people with complex needs who are in custody (with an ‘earliest release date’)
• Planning processes that incorporates the ability to capture the person’s complex needs,
allocating an appropriate, flexible and adjustable plan for 12 - 24 months until reasonable evidence is sought (which may include temporary SIL to prevent homelessness)
Building NDIS Plans
There is inconsistency amongst planners with interpretation of the legislation, particularly
‘Reasonable and Necessary’ section 34 or ‘Supports for Participants Rules 2013’. The
interpretation of the legislation is overly simplified for people with complex needs. It is often cherry picked, and the legislation and rules are not considered holistically when making decisions around funding.
Line items and planning procedures are too rigid for planners to consider core support hours for training, collaboration, comprehensive case notes, adapting care plans and reports. When a provider is working with someone with multiple complex needs this level of indirect support is required to provide a sustainable, appropriate support system. This can amount to hours each week when 3 – 4 support workers are involved. However, since this flexibility currently isn’t an option, if this level of collaboration and indirect support is undertaken, support in other areas will decrease.
Furthermore, there are multiple hours spent setting up a core support team for a participant with a psychosocial disability and other complex needs. NDIS currently funds $500 for this process, which doesn’t account for the multiple hours spent setting up a skilled and sustainable team. This does not compare to setting up a support team for someone with low needs.
When supporting someone with a psychosocial disability, there is a lot resistance from planners to include a high level of Improved Daily Living. The person may require Occupational Therapist /
Mental Health Clinician, Psychologist and capacity building support such as organisation,
planning, decision making support. Without capacity building alongside the right level of core supports, it can be difficult for the person to build capacity, which can lead to more costly supports (such as SIL). At the end of the plan, there is expectation that the funding for capacity building can reduce. It can take years of consistent support for the person to build capacity and the capacity built may not match the expectations of the planners/ LACs who do not understand complex psychosocial disabilities. The only option for this funding to decrease in the future is to provide the right level of funding initially, there needs to be a level of acceptance that some people will always require a very high level of support and therefore suitable funding. Recommendations:
-
Develop a line item in core supports to reflect the complex needs of a participant with a severe psychosocial disability to include training, collaboration, reporting, meeting, comprehensive case notes and handovers
-
NDIS and Planners to develop more comprehensive processes and assessments to capture complex needs of participants and provide level 2 or 3 support funding in core supports
• Training on the different aspects of the NDIS legislation and how to interpret it to ensure the
entire legislation, alongside NDIS Rules are considered.
-
NDIA offices having a direct contact number and email again. This brought down barriers when working with participants with complex needs.
-
TTP – This funding to be added to participants funding to ensure that NDIS are funding the transformation of the market rather than participants
Interplay Between Mental Illness and Other Disorders
Issues: There is a lack of understanding of the link between certain “health” conditions and disability and its impact on day-to-day support needs. An inexperienced planner will push back on supports due the support not being directly related to their primary disability. Often the other condition or
secondary disability is directly impacted by their psychosocial and therefore there is limited
outcomes without addressing underlying issues. We have had experiences where the planner has stated only one disability will be funded.
Some presentations of Personality Disorders, Personality traits and complex psychosocial
disabilities are not well understood within NDIS. There is often a significant impairment with interpersonal relationships, distrust in services, complex trauma and attachment issues. These can be barriers to obtaining appropriate assessments for the planning process, which impacts funding outcomes. Many Support Coordination hours are utilised managing the relationship between the participant and support coordinator and attempting to address barriers to initial service engagement for linking. This decreases the opportunities to focus attention on other goals and building a support network. The length of time it can take for the participant to build trust and more stable relationships with supports and services is a long process and often underestimated, there has then been added barriers where LACs and Planners become involved and are not consistent with boundary setting, this further enables behaviours and all support breaks down.
Recommendations:
-
Assessment process to capture complexities and stream the participant to receive the right level of support.
-
Increased trust in and communication with Support Coordinator when building the plan
-
Flexibility with developing goals.
-
Specialised planners who understand trauma informed practice and experienced working with people with mental illness and personality disorders, even if this means having the meeting online or by telephone.
-
Planners to also adhere to behaviour support plans.
-
Flags on files for people with personality disorders to be contacted and followed up by someone who understands the interpersonal relationship dynamics these people may struggle with, including consultation with the supports for their perspectives/ advice on situations.
-
Significant increase in support coordination hours, including specialist support coordination to reflect the relevant qualification and experience required by the staff member working with the participant. Firm boundaries, consistency, compassion and a trauma informed approach are often necessary and should be delivered by a specialist support coordinator
Building Plans - Support Coordination
Issues:
Specialist Support Coordination is rarely funded and therefore, according to the ‘Guide to
Suitability’ a disability support worker with no experience working with people with complex needs
can work with participants we are supporting (as explained through this submission). If not
appropriately funded for Support Coordination, the participants continue to fall through the gaps, become homeless, unable to access mental health treatment and / or incarcerated. Additionally, an entire NDIS plan can be spent on inappropriate services which leads to increased costs to the NDIS if there is not an appropriate level of support coordination funded. There is a simplistic understanding of the role of Support Coordinator, potentially due to the lack of Specialist Support Coordination being funded. Since they have not been funded for specialist, participants’ needs are not considered complex and hence support coordinator role is simplified There are not enough therapists who work with people with very complex needs within multiple systems. It can take several months for the right therapists, this impacts on the support coordinator being able to develop a collaborative, and trained support network.
The requirements / assessment process for planners to determine if someone would qualify for
support coordination is too simplistic, it is a tick box form as opposed to a dynamic understanding and assessment of reasonable and necessary, It can easily be misinterpreted and repeatedly some planners are not funding this due to their subjective opinions despite evidence presented in clinical reporting. An example of a complexity: Participant doesn’t have guardianship in place due to multiple barriers, many Support Coordination hours are utilised managing consequences of decisions making impairment, managing service relationships, other services calling regularly. This can take up to two hours per week to manage. This doesn’t allow for other crises to be reduced and barriers addressed. Recommendations:
-
Re-evaluation of Specialist Support Coordination allocation / assessment process
-
Re-evaluation of assessment process to capture complexities
-
Increased support coordination hours in plans for someone with multiple systems involved, and barriers to mainstream involvement and other dynamic factors
-
Additional level of support coordination: Specialist Support Coordination becoming level 4 (at the current price guide) and level 3 becoming “Higher Level Support Coordination,” charged at $156.16 to reflect a university qualified professional with experience in working with complex needs. This level of coordination would be longer term and for some people life.
Bibliography
Baldry, E., Dowse, L., & Clarence, M. (2010). Pathways to Prison for Mentally Ill and Cognitively Impaired Offenders
Background Paper. Retrieved from Research Gate: https://www.researchgate.net
Baldry, E., McCausland, R., Dowse, L., & McEntyre, E. (2015). A predictable and preventable path: Aboriginal people with mental and cognitive disabilities in the criminal justice system. Retrieved from UNSW: https://www.mhdcd.unsw.edu.au/
Chapman, S. L., & Wu, L.-T. (2012). Substance Abuse among Individuals with Intellectual Disabilities. Research in Developmental Disabilities, 33(4), 1147-1156.
Gregory, N. (2014). The link between mental health problems and violent behaviour. NT Contributor, 100(14), 34.