Towards active citizenship for people living with psychosocial disability
In conversation with Neil Turton-Lane, consumer advocate; Kate Roberts, NDIS participant carer, and Muriel Cummins, OT and Private Congregate Care Alliance project lead.
In mid-2023 I transgressed one of my own rules to stay in my lane. I did so by stumbling into debates around the NDIS and the needs, concerns, expertise and hopes of people with psychosocial disability. I am still on a journey to learn more about this space before foraying into NDIS policy again in the future. This below conversation with Neil, Kate, and Muriel is part of that learning process.
You approached me to have a conversation about the NDIS, psychosocial disability and moving towards more “citizenship-based” models of participation. Can you tell me why it’s a time for a critical conversation?
The coming months will bring much needed conversation around the future of the NDIS, as the NDIS Review hands down its long-awaited report at the end of the month. The implications for people with psychosocial disability are likely to be significant, both in terms of what the future NDIS will look like for this group, and for the development of services – or foundational supports - for people with psychosocial disability who don’t meet NDIS access criteria. Foundational supports are also interchangeably called ‘Tier 2’ or the ‘disability ecosystem’ in current policy discussions. The re-design of the support and service ecosystem for people with psychosocial disability is a live conversation currently.
This conversation today is about asking people to think about the future. It’s also about contributing to and informing the development of future support models that will enable greater participation and active citizenship for people living with psychosocial disability.
The Productivity Commission Inquiry into Mental Health estimated that 154,000 people who need psychosocial support cannot access it under current policy settings [2]. There have been indications that over 27,000 people with psychosocial disability will be diverted from the NDIS in future [12], who may require a service response. Current NDIS data indicates that people with psychosocial disability continue to experience low rates of social, community and economic participation, relative to the broader NDIS participant population [3]. The current Senate Inquiry to ADHD will produce recommendations for assessment and support for people living with ADHD.
There is an urgent need to proactively and transparently construct the ecosystem together with people with lived experience. This should enable participation of people with psychosocial disability, and protect against the risk of policy-segregation, for people living with psychosocial disability, both within and external to the NDIS. By policy-segregation, we mean the risk that people with psychosocial disability are delivered different, separate, or less, support or even legislated disability rights, based purely on their disability type, by comparison to other groups of people living with disability.
Here, we provide compelling evidence for greater alignment of psychosocial approaches with a social model of disability. The social model is different to medical models and even recovery models of mental health, as it sees disability as the result of the interaction between people living with psychosocial disability and an environment filled with physical, attitudinal, communication and social barriers, rather than disability as an attribute of the person [1].
So what are the key ideas you’re trying to get across, and how might they be different to what others are proposing?
At this important stage, it’s helpful to think about our core ideas and assumptions about people with psychosocial disability and their needs.
The NDIS is Australia’s social model of disability. Resources are allocated in accordance with legislation that underpins participants right to live an ‘ordinary’ life – and tailored to individual needs, as this ‘looks’ different for everyone, depending on the unique barriers they face in daily life, to participating in communities and to working towards their goals.
The psychosocial disability ecosystem, will sit alongside the NDIS. It needs to be built, hence our conversation today. Here, we advocate for a consideration of a social model of disability as the primary approach upon which to build a support and service ecosystem for people living with psychosocial disability. This approach would align with a human rights-based and citizenship-focused frameworks, and bring conceptual alignment with the NDIS and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It would also bring closer alignment with the brand new, hot-off-the-press United Nations and World Health Organisation report published this week Mental Health, human rights and legislation, published this week [13]
Psychosocial disability rights are disability rights. Disability rights are human rights [7].
It can be helpful to think deeply about recovery-oriented policies and approaches, and how they can sit within and integrate with, an overarching social model of psychosocial disability. While recovery-oriented policies and approaches for psychosocial disability have their strengths and have created change in mental health systems, it must be acknowledged the approach is now over 30 years old and emerged to counter a heavily paternalistic biomedical model. For example, a limitation of some previous recovery-oriented service models of care is a tendency to allocate resources to establish a power dynamic where the provider is framed as a ‘helper’ and the person to a passive ‘helped’ role. The social model of disability – focused on self-determination, active participation, and active citizenship - has been described as a highly progressive model that shifts further away from mental health systems thinking and aligns with the broader disability community and rights-based policy directions. Recovery-oriented policies and approaches have been critiqued by human rights and social justice perspectives, [8] [9], and from culturally inclusive perspectives [10] [11] so we need to reflect on all these perspectives as we build models and services for the future.
"Articulated concerns [regarding recovery-oriented approaches] are diverse, but include charges …..that it has been swiftly coopted by traditional authorities and deployed to maintain rather than transform the subjugated status of service recipients; and that it tends to reinforce rather than critically deconstruct ableism (and the marginalized status of disabled persons)."
Community Mental Health Journal, July 2023 [8].
So, a key question we’d like everyone to consider is, how can we shift from service models of ‘care’ to models of ‘participation’. It sounds like a they are similar at a surface level but the underpinning assumptions are vastly different – and will shape development of support and services and the lived of experience of engaging with these. How can new models retain some valuable recovery-model features while shifting towards a social model of disability?
That makes sense, and a citizenship-based approach is more consistent with a close reading of the Convention on the Rights of Persons with Disabilities. So you talk about participation – what would a model of that look like for people living with psychosocial disability?
We explored this exact question through our co-deign project! This is described below. As part of co-design we had a look at international best practice, learnings from the NDIS over the past ten years and recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, Exploitation of People with Disabilities Final Report [4] which highlight the shift to a social model of disability as critical to understanding barriers to participation, including stigma and segregation.
A key learning from the NDIS, highlighted by the co-design project, is that the group of people categorized as living with psychosocial disability, is a highly diverse group with a very broad range of needs facing a range of barriers to participation. Contemporary models must be goal-focused and will need to reflect the diversity of needs that fall under the umbrella of psychosocial disability, which can include learning, communication, social, sensory, ableist, institutional and physical, barriers to participation [6]. New models must evolve from the assumption of homogenous need, and a position that one-size-fits all. New models must also evolve from a simplistic understanding of, and assumptions around, participation-focused capacity building. Support is not equivalent to capacity building. A carer involved in our co-design group commented:
“ We can’t always assume a service offering of a single supportive relationship will lead to greater participation, in fact, it can further segregate the person, limit agency, and even create dependency, moving the person further from their goals”.
The Australian Psychosocial Disability Collective (a group of people with psychosocial disability), highlighted the utmost importance of recognising the person as the expert in their disability.
So you mention the Australian Psychosocial Disability Collective. What’s that about and what’d you all come up with to put some of these ideas into action?
The Australian Psychosocial Disability Collective (APDC) is a group of people with lived experience of long-term psychosocial disability, passionate about making both the NDIS and the ‘ecosystem’ work for people with psychosocial disability. The APDC, in partnership with the mental health occupational therapy community of practice, engaged in a co-deign project during May-June 2023 [6]. A key question explored was around new models for people with psychosocial disability who do not meet NDIS access criteria. Interviews, surveys and qualitative feedback was utilized in understanding this question. Representatives from both communities holding extensive lived and learnt experience across a range of mental health and disability systems, collaborated through an intensive workshopping process spanning 8 weeks, to build consensus and co-design recommendations [6]. This was process was deep, broad, meaningful and practical. APDC highlighted the need for historical models of psychosocial disability support to be modernised and enhanced, and for a stronger focus on rights-based, personalised and active citizenship approaches. The co-designed key features of a foundational model of care for psychosocial disability are summarized in Fig 1 below.
In addition, the co-design partnership recognized the original Tier 2 as envisioned by the 2011 Productively Commission was focused on making our communities and mainstream institutions (hospitals, housing, education) within the ecosystem, more accessible for people with disability. Service-provision models must incentivise inclusion for people with psychosocial disability in a targeted and intentional manner, and become an in-built feature of contemporary models [6]. This is consistent with principles of a social model of disability, and further emphasised by the recent Disability Royal Commission into violence, abuse, neglect, exploitation of people with disabilities Final Report [4].
FIG 1
What’s your final message?
In real terms, the conceptual shift from models of ‘care’ to models of ‘participation’ is urgently required, to prevent sleepwalking into re-creating a historical, or even segregated, psychosocial support service system, and allocating resources and funding, accordingly.
It’s a good time now to consider the social model of disability as the overarching approach underpinning the ecosystem, including foundational supports, for people living with psychosocial disability, enabling conceptual alignment with the NDIS, the UNCRPD, and a vision for rights-based participation. This conceptual alignment would bring a focus on active citizenship as an intended outcome.
Further reading
1. The social model of disability Towards (who.int) Retrieved 28/9/23
2. Inquiry report - Mental Health - Productivity Commission (pc.gov.au) Retrieved 28/9/23
3. NDIS Participant Dashboard for psychosocial disability, September 2023. Psychosocial | NDIS
9. Uncovering Recovery: The Resistible Rise of Recovery and Resilience | SpringerLin
