NDIA Accountability Project

Submission 79 — Queensland Program of Assistance to Survivors of Torture and Trauma — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

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Submission to the

Joint Standing Committee on the NDIS - The provision of services

under the NDIS for people with psychosocial disabilities related to a

mental health condition

from the

Queensland Program of Assistance for Survivors of Torture and

Trauma

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PROVISION OF SERVICES UNDER THE NDIS FOR PEOPLE WITH PSYCHOSOCIAL DISABILITIES

RELATED TO A MENTAL HEALTH CONDITION.

The Queensland Program of Assistance to Survivors of Torture and Trauma (QPASTT) welcomes the opportunity to contribute to the Joint Standing Committee on the NDIS – Mental Health Terms of Reference.

QPASTT is a service which works only with people from refugee backgrounds who have experienced torture and trauma prior to arrival in Australia. QPASTT has been monitoring the implementation of the NDIS for people with psychosocial disabilities. We are not considering being a provider of NDIS services, but we are concerned that the clients we work with are able to access appropriate and relevant support services under the NDIS.

In particular, we are concerned that:

  1. Less than 4% of those with approved plans under the NDIS come from culturally and linguistically diverse (CALD) backgrounds (as low as 1.7% in some trial sites) yet 28.1% of Australians were born overseas (ABS June 14).

There is no data in relation to refugee background nor in relation to psychosocial disability and CALD, however we can assume that refugee background access will be considerably lower;

  1. The issues regarding access to the NDIS for people from refugee backgrounds with a psychosocial disability are diverse with Australians coming from more than 200 birthplaces. This means a diversity of responses are needed;

  2. People are not asking for special or different services but for services based in different cultural frameworks, understandings and languages;

  3. People from new and emerging communities identify with and seek services through communities of interest rather than place based communities and services;

  4. Services cannot be based on an assumption that all users:  Understand empowerment;  Want independence;  Understand choice and control;  Understand what is meant by “reasonable and necessary to meet needs and goals”; or  Understand the concept of permanent impairment in relation to mental health.

While the NDIS seeks o improve the lives of people with disabilities including psychosocial disabilities it is vital that:  Our client cohort are provided with access to appropriate resources allowing them to make informed decisions and choices, and  The system is flexible enough to respond to individual needs of all client groups.

Without these considerations being met, there will just be different winners and losers.

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WHAT IS QPASTT

The Queensland Program of Assistance to Survivors of Torture and Trauma (QPASTT) is a Queensland community based service providing counselling, support and community development activities for refugee survivors of torture and trauma at an individual, family and community level. We work within a strong recovery framework and seek to address the multiple issues of loss that typifies the experience of becoming a refugee as well as the added issues of psychological recovery from trauma. QPASTT works with children, young people, adults and families. The organisation puts a strong emphasis on community engagement and community development activities which aid in community healing and recovery from the experience of torture and trauma.

We are the Queensland member of the Forum of Australian Services to Survivors of Torture and trauma (FASSTT).

WHAT IS FASSTT

FASSTT has a long history of working with Australian Governments at each level to deliver professional, targeted and specialist services underpinned by research and evaluated against national standards. We work with Federal Government agencies, in particular the Department of Health and Ageing, to deliver sustainable effective responses to people who have experienced torture to enable them to settle and contribute to the Australian community. We are the only specialist Torture and Trauma Service in Queensland.

FASSTT member agencies have been delivering services for between 18 and 26 years. FASSTT agencies assist survivors to recover and rebuild their lives after having been tortured and traumatised in their countries of origin, while in flight, or during their stay in refugee camps. This is achieved by:  providing high level specialist trauma counselling and casework services, and facilitating referrals into mainstream health and educational services (for example, early intervention programs with children and adolescents to minimise longer term mental health problems and the trans- generational effects of torture and trauma);  increasing the capacity of mainstream health, community and educational sectors to be more responsive to the needs of refugees and survivors of torture and trauma;  training and consulting with other service providers (e.g. doctors, allied health professionals, community workers, teachers);  producing resources for health, community and educational services about working with refugees and survivors of torture and trauma (for example, resource guides for general practitioners and primary health care workers, guides for group work with primary and secondary age children and young people);  developing innovative programs for assisting clients and the community (for example, establishing mental and physical health clinics, undertaking group work with clients, conducting research, working in schools);  building the capacity of newly arrived communities to integrate more effectively into Australian society.

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FASSTT member agencies provide psychological support (under the PASTT program) to just under 20,000 people each year who have arrived in Australia under the Refugee and Humanitarian Program from more than 72 countries. More than 70% of people using FASSTT services require the support of an interpreter.

FASSTT agencies have been delivering services to survivors of torture and trauma and to other services for more than 25 years. They are regarded as experts both nationally and internationally. All FASSTT agencies are not-for-profit and receive funding from State and Federal Governments, philanthropic trusts and private donations. FASSTT agencies are also the principal contractors to the Department of Health (DoH) to provide services under the Program of Assistance for Survivors of Torture and Trauma (PASTT). This program provides services to torture and trauma survivors at any time after their arrival in Australia and allows for medium–long term psychosocial interventions.

The unique context of Australia’s PASTT Program Torture1 has a specific definition and methods of torture are well documented2. It is estimated that world-wide up to 35% of refugees have been physically tortured or psychologically violated3. Many refugees have experienced other traumatic events in countries of origin, during flight and in transit countries. Research suggests survivors of torture are a particularly vulnerable group for health disorders of different kinds4. The rationale for a specialist service is not only the prevalence of mental health concerns associated with the legacy of the refugee experience but also their enduring vulnerability in the course of settlement at an individual family and community level. FASSTT member agencies provide a specialist service through bio-psychosocial support to refugees and asylum seekers who are profoundly traumatised and whose recovery must develop essentially in a place of exile where systems, language, culture and identity all need to be renegotiated.

Client profiles The majority of FASSTT clients have physical and mental health problems related directly to torture experiences or trauma associated with their refugee experience. For example, the most recent report to the Department of Health from FASSTT indicated that 70% of clients assessed by FASSTT services (with PASTT funding) exhibited psychological sequaleae of trauma to a significant degree.

1 Torture is the intentional infliction of severe mental or physical pain or suffering by or with the consent of the state authorities for a specific purpose. It is often used to punish, to obtain information or a confession, to take revenge on a person or persons or create terror and fear within a population. Some of the most common methods of physical torture include beating, electric shocks, stretching, submersion, suffocation, burns, rape and sexual assault. Psychological forms of torture and ill-treatment, which very often have the most long lasting consequences for victims, commonly include: isolation, threats, humiliation, mock executions, mock amputations, and witnessing the torture of 2 IRCT http://www.irct.org/what-is-torture/defining-torture.aspx 3 R Baker, ‘Psychosocial consequences of tortured refugees seeking asylum and refugee status in Europe’, in M Basaglu (ed), Torture and its consequences: current treatment approaches, Cambridge University Press, Glasgow, 1992, p85. 4 UNHCR, Refugee resettlement: an international handbook to guide reception and integration, UNHCR and VFST, Melbourne, 2002, p233. 4

International clinical studies support the finding that refugees have high prevalence rates of mental health problems, significantly greater than the rates among the general population.56. Clearly, refugee and humanitarian entrants, particularly survivors of torture and trauma, have particular needs and are accordingly appropriately treated as a special needs group within the mental health service context. These needs arise from the fact that their circumstances are commonly characterised by the following:  extreme adverse life circumstances such as experience of war, persecution, torture, displacement and prolonged periods in refugee camps or countries of asylum prior to arrival  limited or disrupted schooling  family dislocation  limited health care before arrival in Australia  stressful nature of settlement demands  limited employment opportunities for new arrivals  limited social support and networks because of the small size of refugee communities and fragmentation within those communities  cultural and language barriers to accessing mainstream health services for asylum seekers and people on temporary and bridging visas, uncertainty about their future status and ability to remain in Australia. The well-being of children and young people can be particularly affected because disruptions to schooling and family integrity are major risk factors for poor health. The profile of the refugee and humanitarian population is constantly changing and will continue to change because the make-up of this group reflects conflict situations around the world and decisions by government about regions from which refugees will be selected for resettlement.

What makes FASSTT Agencies Unique? FASSTT member agencies share a strong commitment to working in collaborative partnerships and to developing clear protocols and “mission” for these partnerships. Partnerships are formed in order to provide wrap around support services for vulnerable people. Thus partnerships have been developed with children, family and youth, housing, education, health, settlement and community services. There is also a clear commitment to working in partnership with Government. During the past 26 years, FASSTT agencies have developed a unique international reputation for cooperation, collaboration, clinical expertise, quality assurance, and resource sharing and skill development. It is represented on a number of UN and international bodies addressing the issues for refugee related torture and trauma.

5 K Allden, Paper presented to the International Conference for the Reception and Integration of Resettled Refugees, Sweden, 2001. 6 C Gorst-Unsworth and E Goldenberg, ‘Psychological sequelae of torture and organised violence suffered by refugees from Iraq: trauma related factors compared with social factors in exile’, British Journal of Psychiatry, vol. 172, 1998, pp90-94; MA Simpson, ‘Traumatic stress and the bruising of the soul’ in J P Wilson and B

Raphael (eds), International Handbook of Traumatic Stress Syndromes, Plenum Press, New York, 1993, pp667-

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Innovative responses to meeting the needs of the client cohort FASSTT member agencies have built an innovative model of service delivery that is based on a profound appreciation of the social and clinical impacts of trauma; how this applies to the refugee experience; a capacity to work cross culturally; and a focus on building capacity (at an individual, community and systems level) to maximize an individual’s full participation in their new society. The model of service delivery used by FASSTT agencies recognizes the fundamental importance of the social determinants of health and the importance of linkages to other supports. Links to innovative employment support options, community development, family relationship support, and work with health and education systems are key to the recovery model within which we work.

CURRENT ISSUES AND BARRIERS FACED BY OUR CLIENT COHORT

Current Issues and barriers faced by the client cohort when accessing mainstream services (including NDIS) such as public hospital and health and mental health systems, employment systems and aged care and disability support systems include:  Lack of effective and accessible service provision including lack of culturally responsive service models and infrastructure, lack of appropriate cultural competency training, refusal to use interpreters, lack of knowledge around the impact of torture and trauma;  Cohort characteristics – impact of torture trauma, lack of trust and fear of agencies and officers in position of authority including health and mental health practitioners, mental health and cognitive impacts, lack of knowledge about Australian systems, differences in services and health models in countries and cultures of origin.

FURTHER BARRIERS IDENTIFIED FOR CLIENTS IN ACCESSING THE NDIS AND INFORMED USER

CHOICE SERVICES FOR THIS CLIENT COHORT. The introduction of the NDIS and its associated market driven principles of contestability, competition and user informed choice are likely to compound barriers to appropriate service access for people from refugee and humanitarian backgrounds with psychosocial disabilities for a number of reasons:  The NDIS is a system that was primarily designed for people with physical, intellectual and learning disabilities – the needs of people with a psychosocial disability has been tacked onto a system that was designed for a different client cohort without sufficient consideration of what may be different for this cohort. This is apparent in much of the language used, for example around permanency. Even the term “psychosocial disability” is not one that tends to be used in the mental health sector or by consumers. This issue is further exacerbated for people from refugee backgrounds for whom the model of service determination and choice is not well understood.

 There is a misconception between what the NDIS is promising and what it can in reality achieve. Language used in the NDIS such as “reasonable and necessary supports needed to enjoy an ordinary life”. “The NDIS will help people with disability achieve their goal” implies much more than the scheme can actually deliver. For many mainstream Australians the context in which the NDIS provides supports is understood but for people from refugee backgrounds this can easily be misunderstood. E.g. what an individual might think will make

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the most difference to their life may be a family reunion visa so that the person can have access to an appropriate family carer, but this is not achievable under the NDIS.

 Capacity of this client cohort to make choices and decisions that are authentically informed is severely limited for multiple reasons: language and cultural barriers; lack of understanding about Australian systems and cultural context of making choices within contexts of authoritative systems and experts; lack of self-advocacy skills that are critical to making informed decisions; and significant levels of vulnerability due to the impacts of torture and trauma exacerbated by the settlement processes.

 There has been a lack of mental health specific consultation. This, added to the issues in relation to a refugee specific population, means that this cohort have not engaged in the process. When working with communities where the stigma and misunderstandings around mental health are significant much of this consultation needs to commence with understandings in relation to mental health, not just the NDIS.

 Information on the NDIS for this client cohort is not available and requires not just information on the scheme itself but also on what is meant by an “insurance” scheme within the NDIS context. What does “individual entitlement” mean, what is a “psychosocial disability”; what does the language used by the NDIS means (e.g. to lead a better life). These require objective, comprehensive and specialised communication strategies that in turn require investment to establish and maintain. It is not sufficient to have translated material into 10 languages (we work with more than 70 languages each year) tucked away under a sub-heading on the website. People would not be able to access this site if they cannot speak English let alone find the right links.

 Section 55 of the Act requires service providers to provide client details to the NDIA so that they can be contacted directly by the NDIA. This will cause considerable fear and distress when working with people with a psychosocial disability as this has not been made clear to the client group and has caused real issues in a number of the trial sites leading to shock and distress about details being handed over; and had a negative impact on people’s level of trauma. When working with people who have experienced torture at the hands of the state, people have heightened concerns about the sharing of information and disengage from services when this occurs.

 The provision of effective and efficient services to this client cohort is highly specialised and mainstream human services agencies generally do not have the skills, knowledge, infrastructure or flexibility in their service model and frameworks. Effective work with refugee communities requires long term sustained community engagement and the existence of content free funding would not necessarily enable better service access or provision. Examples of this can be found in the current failure of the NDIS to ensure people from CALD backgrounds have access to the scheme let alone to the service outcomes that they may desire. In the NDIS sites to date only 4% of people who have successfully received a package come from CALD backgrounds. 7

 Confusion over what constitutes a sufficiently severe mental illness to be considered for an NDIS package. Currently it appears that some applicants are rejected either because the language used by health professionals is questioned by the NDIA, because their condition is not sufficiently severe or permanent or because they have a particular diagnosis which has been ruled out e.g. PTSD. This acts to confuse the community and individuals and does not examine the impact on capacity to function but rather makes a judgement on the basis of a diagnosis.

 Impact of the concept “permanency” rather than recovery focus for a client group whose psychosocial disability is based in pre-arrival experiences. We would always stress that people have normal reactions to “abnormal” experiences rather than symptomology based in an individual pathology. This is particularly the case for individuals for whom the “engine room” of poor mental health is torture and trauma rather than “organic”.

 Determination of permanency in relation to “impairment” needs to be made by a qualified medical practitioner including evidence that the condition itself has been addressed within the mainstream mental health system The impact of having to have a “diagnosis” and having to have this substantiated either by the acute mental health system or a General Practitioner will prove difficult for people from refugee backgrounds. Many do not engage with the acute mental health system and unless necessary we actively seek to keep people out of the mainstream mental health system. Much of our funding is tied to keeping people out of the acute mental health system, however under NDIS we will in fact need to encourage people to interact with the acute system to get a diagnosis and to get the “most severe” diagnosis that they can.

 The system is highly reliant on the preparedness of GPs, however this system is already struggling in relation to seeing clients from refugee backgrounds with complex needs and a different framework around health and mental health. This is exacerbated by access to bulk billing GPs and specialists are an issue for all people on low incomes – gap fees for psychiatrists up to $168 per visit.

 The NDIA has been unable to acknowledge the difference between the broader culturally and linguistically diverse (CALD) group, and new and emerging community needs. CALD is not a cohesive community group with similar needs. Frequently people from Refugee Backgrounds have experienced interruption in education, extreme dislocation and come from very different social service and governance structures. This is on top of experiences of torture/trauma. In many of these communities stigma is huge and driven by country or origin beliefs and treatment (or lack of) around mental health. In addition, individual entitlement concepts do not fit with collectivist communities – while it may not be possible to incorporate this, it does need to be taken into account in community consultation and capacity building strategies.

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BARRIERS IN RELATION TO PLANNING AND ASSESSMENT

 Frameworks need be cognisant of issues in relation to refugee related trauma including of the length of time needed to build relationships. Currently the assessment process is either undertaken over the phone or in one assessment – it is unlikely that people from refugee backgrounds will feel comfortable in disclosing needs, particularly in relation to mental health either on the phone or at the first meeting.

 Interpreters are not currently being used extensively and LAC’s do not have training around appropriate use of interpreters. In addition LAC’s need to not only be culturally competent but work from a culturally diverse framework of understanding.

 Interpreters need to be considered as an automatic entitlement rather than part of someone’s package.

 The principle of self-advocacy may be difficult for anyone with a psychosocial disability depending on their current status, however people from refugee backgrounds are unlikely to have the knowledge around mainstream systems, the possibilities in relation to what may be possible and whose trauma (or their parent’s trauma) has a severe impact on their functional capacity (eg language);

 Impact of previous experiences prior to arrival in Australia on people’s concept of what their “needs” are and how their life may be different need exploration, and current NDIS assessment and planning processes do not take this into account. This includes difficulties in expressing needs and goals or in understanding the possibilities that may exist.

RECOMMENDATIONS

  1. That the Federal Government considers whether the current NDIS model is the best model for meeting the support needs of people with a psychosocial disability and particularly those from refugee backgrounds.

  2. That the Federal Government considers the need to fund advocacy services for people with a psychosocial disability and in particular for people from new and emerging communities for whom the concept of self-advocacy is likely to be a significant barrier to service access.

  3. That the NDIA considers the need for longer and more considered assessments (over a period of time) for people with a psychosocial disability and in particular for people from refugee backgrounds who have experienced significant trauma prior to arrival in Australia.

  4. That the NDIS CALD strategy (which has yet to be finalised): 9

 Includes a communication and engagement plan to build understanding and knowledge about what a psychosocial disability is, what the NDIS is, who may be eligible and how to access;  Provides guidance for embedding cultural competence i.e. language and culture throughout the NDIS;  Collects appropriate data;  Includes performance measures;  Includes a workforce development plan to build cultural competence;  Provides advice and guidelines on interpreters and translations.

  1. That a capacity building program be developed and resourced which aims to:  Build the capacity of individuals, families, community members and leaders to access the NDIS;  Build the capacity of individuals, families and community members from refugee backgrounds to understand the concept of psychosocial disability with a focus on strengthening families and communities to support people with a psychosocial disability;  Build the capacity of NDIS organisations and mainstream organisations and their staff to provide culturally accessible and appropriate services.

  2. That existing specialised services are able to provide advice and assessments for consideration in relation to impairment and needs for support, not just General Practitioners and the Acute Mental Health system.

  3. That a specialised trial is considered which looks at the interface between the NDIS, psychosocial disability and people from refugee backgrounds.

  4. That consideration be given by the NDIA to the impact of automatic collection of personal information and data on the individual.

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