NDIS: Risks to vision, mission, and the way we work

Mental Illness Fellowship Victoria

Article by
Elizabeth Crowther, Chief Executive Officer
and
Laura Collister, General Manager, 
Rehabilitation Services
Mental Illness Fellowship Victoria

This article first appeared in the Summer 2014 edition of newparadigm, the Australian Journal on Psychosocial Rehabilitation, published seasonally by VICSERV. This journal exists to encourage discussion and information sharing on material relevant to mental health such as innovative service programs, new research and current thinking on policy and service provision.

The introduction of the National Disability Insurance Scheme (NDIS) will transform the way the community managed mental health sector delivers services to people with a mental illness. These changes will challenge the capacity of agencies to deliver against their vision and mission, cause us to rethink our role in facilitating recovery, and threaten our alignment with evidence based practice. 

At the same time, however, the NDIS will bring welcome change to an agency’s relationships with clients, delivering greater choice and control to the client, and greater agency accountability to clients and the community. The aim of this paper is to identify some the key issues that agencies will face in delivering rehabilitation and recovery oriented services in an NDIS environment, based on our early experiences in the current trial site in Barwon.[1] 

Defining disability under the NDIS 
 

The NDIS is “a new way for people to get disability support that takes an individualised approach to providing care and support over a person’s lifetime.”[2]  To be eligible for the NDIS participants will need to demonstrate that their disability is the result of permanent impairment. These concepts are fundamental to the design of the NDIS.

Impairment refers to “problems in body function or structure such as significant deviation or loss”, [3]  and the concept of permanence, in the NDIS, applies when “there is no known clinical or medical treatment that would remedy it; and it does not require further medical treatment or review in order to demonstrate permanency.”[4]  This implies the impairment would remain despite clinical intervention.

Disability is the impact of impairment on the person’s functional capacity to perform activities in one or more of the following activities – communications, social interaction, learning, mobility, self-care and self-management. These functional deficits impact on the person’s capacity for social and economic participation and are likely to require support for the person’s lifetime, despite variation.[5] 

These definitions underpin NDIS eligibility and design. While mostly applicable in many physical conditions, they lead to problems when applied to mental health and recovery.

Challenges for psychosocial approaches
 

Assessment of a disability arising from a physical health condition, for example the functional impact of a stroke on a young adult, is relatively clear. Health services provide immediate treatment and rehabilitation designed to remediate the condition and return the client to as near to pre-morbid functioning as possible. At some point in this process the health team determines that remediation is no longer possible and the focus shifts to compensatory or disability support that enables the person to function at home and in the community, despite what is now considered a permanent impairment. This somewhat simplistic example would see remediation approaches occurring in the health care system, whereas compensatory approaches would belong in the NDIS. In reality, of course, the shift from remediation to compensation is not dichotomous, but rather exists along a continuum.

Compensatory approaches could include assistance to shower, dress, and prepare meals, and to purchase mobility equipment and related training. NDIS supports, to date, are predominantly compensatory and funded at a level that reflects the staffing required to support clients, rather than applying psychosocial rehabilitative approaches that are designed to remediate impairment and build capacity.

Skills development approaches are also included in the NDIS and are defined as training participants or their carers to perform daily living and life skills. At first glance these approaches appear similar to some of the psychosocial rehabilitative approaches we use in the community managed mental health sector. In reality, however, these descriptors and their related funding reflect a pure training model that does not account for the work we do to address the underlying impairments that limit daily living and life skills. A simplistic but relevant example might be the way we work with people to manage obsessional compulsive behaviour that affects their self-care routine in the morning. Our approach here is not skills training, rather it is the development of strategies, based on cognitive behavioural techniques, to manage anxiety.

The NDIS does include Therapeutic Approaches carried out by defined allied health professionals, for example occupational therapy in a group. However the definition of these supports very clearly prescribes that they should assist the client to apply functional skills rather than improve their health.[6] 

These concepts of health and disability, and the consequent differentiation between health services and disability support, present major difficulties to the community managed mental health sector, and more broadly to the delivery of evidence based psychosocial approaches that support recovery.

The risk to evidence based recovery
 

Victoria’s community managed mental health sector was established in the early 1990s and delivers a range of programs that support people with a mental illness to recover and build satisfying and contributing lives in the community. We work alongside, and increasingly integrate with, clinical services that deliver mental health treatment. We work with participants to explore and understand their recovery aspirations, and develop strategies to achieve them. Our specific intervention approaches are informed by the bio-psychosocial model which provides foundation understanding of the factors that impact on mental illness and recovery.

This model holds that performance of activities, and hence disability, is impacted by a range of factors – biological, psychological and social in nature. These include the positive and negative symptoms of mental illness, and any cognitive impairment that is experienced as a result of long standing illness. Social factors, such as supportive relationships, are known to positively influence illness and recovery, while their absence has a negative impact.[7]

We, therefore, understand that difficulties in functioning, such as regularly caring for one’s self and one’s home, is rarely due to a skills deficit alone; rather it is due to an interplay of underlying deficits and the social factors. Our interventions, therefore, identify underlying deficits and, in partnership with the client, develop and practise strategies to overcome the deficit and build on strengths. These strategies are practised across the range of impacted tasks. Our intervention, thus, is directed at the impairment level rather than the performance itself (although an onlooker may not easily observe that difference). 

Similarly, peer work is a specific example of an evidence based approach that is adopted by many community managed mental health agencies. It increases responsiveness to issues such as housing and employment and a person’s ability to bring about changes in their lives. Literature has suggested that instilling hope, the use of role modelling, and the nature of relationship between peer workers and participants are unique contributions from peer workers.[8]  Peer work, therefore, addresses some of the psychological impacts of mental illness, such as reduced self-efficacy and hope for the future. While peers often appear to be working at a functional level (that is, doing things with participants) their potency is best understood at a psychological level. 

This places much of the work of the community managed mental health sector as a combination of health interventions and disability support, rather than disability support alone. Decisions by the Victorian Government, however, to cash out psychiatric disability rehabilitation and support services (PDRSS) and by the Federal Government to include Personal Helpers and Mentors service (PHaMS) and respite funding in the NDIS trials will challenge the capacity of organisations to deliver evidence based rehabilitative approaches.

It is also doubtful that clinical services will be able to effectively take on this role and there is, therefore, a high risk that evidence based recovery services will be unavailable to people with a mental illness and their families.

Changing the way we work
 

The way we work with people in the NDIS context is also transformed. The intent of the scheme is to provide participants with maximum choice and control, enabling them to choose their support package and who will provide them. These features are closely aligned to the principles of delivering recovery oriented services. In practice:

  1. A person or their carer will approach the NDIA, or be referred to the NDIA.
  2. Their eligibility will be assessed. 
  3. If ineligible, clients will be linked to mainstream services.
  4. If eligible, the client will become a participant of the NDIS and work with a planner to develop a Disability Support plan.
  5. The plan will identify participant goals and the services that will be funded to deliver each element of the plan.
  6. Services will only work on agreed support items for the approved number of hours.
  7. Services will claim for payment after the hour(s) of support has been delivered. Payment will only be approved for services that have actually been delivered.
  8. Plans will be reviewed by NDIS on a 12 month cycle, or if a significant change occurs.

These arrangements inherently fragment planning and service delivery. The planning process will be undertaken by NDIA planners who will explore each participant’s goals and aspirations and develop a related plan. This office-based process assumes that participants are able to articulate their goals and aspirations in a relatively short period of time and to a planner who they barely know. It will replace the current process employed by community managed mental health organisations to develop an individual recovery plan. Our current practice places the recovery plan as the roadmap for the services we deliver. It is developed in partnership with clients in the context of a relationship with a key worker who understands the individual’s barriers and enablers of recovery, and is able to coach and support them to imagine a better life. This will no longer be the core work of our sector.

What we do know is that some clients benefit from education, experiences and peer support to enable them to contemplate a life beyond their current experience of mental illness. MI Fellowship was funded to deliver peer led recovery education programs, known as MI Recovery, to prepare people for the NDIS. It was observed:

“All the individuals that participated in this group were stumped when I initially asked them to think about what they would want if they had the choice to choose the type of support they could receive and empower them to have a better life….Not one of the participants knew what they wanted, not one of them could put a concrete want on paper….They had been so used to taking what they were given, and just accepting it whether they liked it or not, that they had actually become submissive in their own lives.”

(MI Recovery peer facilitator, MIF NDIS Practical Design Project)

The NDIS currently does not have a support item that enables agencies to engage with participants in a process of recovery planning and exploration. This process is exclusively conducted by the NDIA planner.

Consequently, participants can receive a plan that engages a number of service providers to deliver different aspects of the support plan. While this arrangement provides for greater diversity of choice it can unintentionally disintegrate service delivery and may be inefficient. Typically, a person’s performance in more than one activity is affected by common underlying deficits and strengths and a range of social factors that can act as a barrier or enabler of recovery. Understanding these multiple factors and developing related strategies maximises the impact of intervention. There is a risk that engaging different agencies to deliver different elements of the plan will result in ineffective, duplicative or competing approaches. Our early experiences of Disability Support Plans confirm this possibility.

NDIS impact on vision and mission
 

As organisations consider their responses to the NDIS they will undoubtedly turn to their vision and mission for direction. These statements are generally aspirational in nature and commit the organisation to a vision of a better life in the community for people with a mental illness and their families. They create a vision of recovery, and endorse best practice, a family inclusive approach and community capacity building. It is doubtful that the current design of the NDIS will enable organisations to effectively deliver against vision and mission. Not only will the types of services we are funded to deliver be affected, but also the people with whom we work.

It is likely that many clients currently served by PDRSS will not be eligible for the NDIS. The Productivity Commission has estimated that 60,000 people with a mental illness across Australia will be eligible for an individualised support package through the NDIS. Other participants will be redirected into mainstream services. Given an estimated 459,000 Australians have a mental illness, it looks likely that many will miss out on individualised support packages. 

Services delivered to families and carers will also be affected by the introduction of the NDIS. There is currently no identified item to support and educate families and carers in their own right. Rather, reference to family is limited to support items that train the carers in parenting skills or managing behaviours of concern. The delivery of carers’ support, through evidence based programs such as Well Ways Family Education programs, respite or mutual support, and self-help groups will be limited under the NDIS, with only a proportion of carer support funding from the Department of Social Services remaining outside of the NDIS.

The NDIS presents major challenges to the community managed mental health sector. Changes in service delivery are being acutely felt by services operating in the trial site in Barwon. It is incumbent on the sector to understand the scheme and its impact and collectively work to influence the national roll out to ensure best outcomes for people with a mental illness and their families. 

[1] MI Fellowship is currently transitioning Youth Residential Rehabilitation and Mutual Self Help and Support programs in the Barwon region to NDIS.
[2] NDIS, Information for service providers in Victoria, available at http://www.ndis.gov.au/document/250
[3] World Health Organisation (2002), Towards a common language for functioning, disability and health, Geneva
[4] NDIS, Decision tree: eligibility for individualised funding for ongoing support needs, available at http://www.ndis.gov.au/sites/default/files/documen…
[5] Davidson, Larry et al. (2012). Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry 2012;11:123-128.
[6] NDIS, Support Clusters Definitions and Pricing, available at http://www.ndis.gov.au/sites/default/files/documen…
[7] Anthony W A & Farkas M (2012), The essential guide to psychiatric rehabilitation practice, Boston University, Boston, USA.
[8] Davidson L et al. (2012), “Peer support among persons with severe mental illnesses: a review of evidence and experience”, World Psychiatry 2012,11:123-128.

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Article contributed to the newsletter Perspectives - June 2014. Please note that this article is from an individual contributor and does not necessarily reflect the views of the Mental Health Council of Australia

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