To: Joint Standing Committee on the NDIS
Email: ndis.sen@aph.gov.au
From: Barnardos Australia
Topic: The provision of services under NDIS for people with psychosocial disabilities related to a mental health condition
Date required: 27 February, 2017
Introduction
Barnardos Australia (Barnardos) is pleased to contribute to this inquiry on the
implementation, performance and governance of the NDIS services for people with
psychosocial disabilities related to mental health conditions.
Barnardos is a large non-government family support and out of home care service provider, we assist over 11,000 highly vulnerable children, young people and families in NSW and ACT each year. Many of the people we work with have unmet needs for support as a result of
psychosocial disabilities and associated mental health conditions (see definitions in
Appendix). This submission will focus on our key client groups of:
children in long-term foster, adoption and residential programs. young people presenting to our adolescent support services and those ‘aging out’ of the child welfare system. parents in our family support services where there are concerns about mental health.
In some of the areas where we work, improvements in care are already being experienced when NDIS services have been made available. However, we currently find the provision for our client groups with psychosocial disabilities inadequate - even where NDIS has been rolled out. We believe the difficulty of achieving adequate support is due to the complexity of need for
many of these families, especially when families are also involved in child welfare
interventions.
Complexity of family problems can lead to a failure to identify the need for support for psychosocial disability because of the way problems are defined and prioritised. A typical family that Barnardos works with may have parents with mental health conditions, children with cognitive impairment, statutory involvement due to child protection concerns, violence in the home, and the family may be facing homelessness. Such families are challenging for service systems and there can be difficulty identifying, and then meeting, the need for support
because of psychosocial disabilities, amidst the range of problems to be addressed.
Furthermore, such a wide range of difficulties can require workers with strong skills to understand what is required for adequate case coordination and case management, within the context of specialist organisations to address complex family needs. An additional issue is that many of the families that we work with require medium or long-term assistance however, because of the immediate nature of the families’ problems, they are sometimes referred to time-limited State services. Barnardos strong experience and belief is that families requiring support as a direct result of psychosocial disability should be referred to NDIS in order to be offered longer term support.
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Additionally, a common characteristic of such families is poverty and this can present a barrier to accessing NDIS services. In our experience families are not being assessed adequately for NDIS services because of ‘gap payment’ issues in using Medicare funded services for psychosocial disability diagnosis and assessment of eligibility for referral to the NDIA/access to the NDIS.
We would point to a number of practical difficulties as a result of these issues. Below is a list of issues experienced in the ACT (where NDIS rollout has been completed):
the length of waiting lists for services and resulting difficulty in accessing support when families urgently need it. This appears to be the result of underestimation of the numbers of people requiring services. difficulties in accessing NDIS support for psychosocial disability for many children and parents because they have been diverted from NDIS to Territory funded, short term mental health services. Many of the children and parents that we work with suffer mental health conditions caused by ongoing trauma and multiple ‘adverse childhood events’ which can take a long time to address. barriers for families, who we believe require support because of mental health conditions, because their social functioning is so poor that they cannot organise assessment. Barnardos is regularly required to work on these issues. Assessment for developmental delay is particularly important for our client group where trauma has been significant. reluctance to provide support services where there is only a mental health condition compared to access to NDIS support when there is a physical condition also involved (for example foetal alcohol syndrome). difficulties for financially disadvantaged people with getting assessments which allow them to make a case for access to NDIS services. These assessments are very important because many of our parents/carers are not able to present their cases well because of the difficulties such as being highly stressed due to chronic problems, or because they have not slept or because sometimes they are dealing with active crises during planning meetings. Such families may have not been able to access services because of the cost of diagnosis (including Medicare gap fees). Financial barriers to assessment are particularly pronounced where both parents and children have mental health conditions, and where there is cognitive impairment.
The ability of parents and children affected by psychosocial disability to access NDIS services directly impacts the ability of agencies such as Barnardos to work productively on child welfare issues. Our caseworkers can offer support to families and children in relation to living situations and daily functioning however, our workers are not specialists in mental health conditions nor is our organisation currently funded to work with parents with mental health conditions. Furthermore, we are often not funded to support people for the long-term, or, if their status changes (for example when young people age out of the foster care system or are adopted).
Following is an outline of the needs of particular groups that we work with to throw light on the size of the groups who would benefit from psychosocial support because of mental health conditions.
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Children who have been abused, neglected and suffered systems abuse
Barnardos works with children in foster and kinship care placements who have been
significantly abused or neglected and are in permanent long-term care; many have
experienced significant trauma and suffer mental health conditions as a result. We believe that these children need to be considered in the estimates of the people requiring NDIS services and have their needs for service prioritised.
The mental health of these children is frequently poor. In a study conducted with 347 children in foster and kinship care in NSW, 53% of girls and 57% of boys had at least one Child Behaviour Check List (CBCL) scale score in the clinical range (Tarren-Sweeney and Hazel 2005). These researchers concluded that ‘Children in care manifested significantly higher rates of disturbance than the community sample on every broad band and subscale, except for boys’ somatic problems (p 91). An international systematic review of the literature on child welfare mental health interventions has further reported that:
50-80% of children in foster care meet criteria for mental health disorders (Farmer et al 2001, Leslie et al 2005); Twenty-three percent meet criteria for more than one mental health problem (Garland et al 2001); Common mental health problems in foster care include disruptive behaviour disorders (54% Garland et al 2001):, Post-traumatic stress disorder (10% in Garland et al, 2001) and mood disorders (7% Garland et al, 2001,Hambrick et al 2016) (Hambrick, Oppenheim-Weller et al. 2016 p.65).
Many children removed from their families have suffered trauma as a result of abuse and neglect, and subsequently they may have had multiple placement moves and consequently experience significant attachment problems. There is increasing awareness that such Adverse Childhood Events (ACEs) are linked to adult ill-health, including future mental health conditions (Felitti, Anda et al. 1998, Anda, Felitti et al. 2006). Research shows that the children at greatest risk are: those who entered care at a later age, have intellectual disability, have reading difficulties, have experienced three types of maltreatment, recent adverse events, and placement insecurity (Tarren-Sweeney 2008). These local researchers call for earlier recognition and treatment of problems. Many of the children who have contact with child welfare services have also been affected by violence in the home (NSW Family and Community Services 2013). Children living with Intimate Partner Violence often see or hear violence or they may be threatened or injured (Clearinghouse and The University of New South Wales 2011). There is strong research evidence of the links between intimate partner violence and mental ill health (Bonomi, Anderson et al. 2009).
Currently children living with Barnardos have casework and other support funded by State and Territory government departments and Barnardos supplements government funds with public fundraising, however this is inadequate to provide required long-term support for psychosocial disability at the level needed. In a recent study of children adopted from Barnardos NSW care between 1987-2013, 49% experienced significant psychosocial mental health behavioural problems and 41% received counselling or therapy whilst with us. In NSW currently this specialist assistance can be difficult to find and maintain, particularly when it involves adolescents.
Psychosocial services are demonstrably needed over the medium to long-term. Current Federal funding under Medicare mental health care plans is not sufficient as it only provides for up to 10 sessions of counselling in a calendar year - many children and young people who have experienced severe trauma associated with child abuse and neglect require weekly sessions over a much longer term in order to reduce long-term welfare dependency as adults.
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Also the 10 sessions usually have a gap fee of $40- $80 per session and this is a significant barrier for families especially if there are multiple children who need therapy and the family is in private rental accommodation. Barnardos believes that these children would also benefit from services such as play therapy for children, group based and activity supports.
A further requirement for services, occurs when these children leave Barnardos care at age 18 or through adoption. Barnardos is not funded to provide post care services and consequently individuals can be left with diminished support for psychosocial disability. In Australia in 2014-15, 11,138 young people left care (Australian Institute of Health and Welfare 2016 Table 5.6). Based on the study quoted above, roughly half of these 11,138 young people will have mental health conditions. The support of young people leaving care is well-known to be inadequate. These young people generally have very limited financial assistance when they leave care and inadequate support from State funded support services. These problems have been recognised as a significant social problem over the past 3-4 decades. However, policies have not been put in place to ensure that people have adequate psychosocial support (Mendes and Moslehuddin 2004, Mendes and Moslehuddin 2006, McDowall 2011). We particularly draw your attention to the CREATE organisation for young people in care who have lobbied governments on this issue over many years (http://create.org.au/publications/research reports/). Submissions were made to the Senate Community Affairs Reference Group on Out of Home Care in October 2014 on the vulnerability and lack of support for these young people. However, very limited policy changes have been put in place as a result.
In relation to children who exit Barnardos through adoption, a number will require services for psychosocial disability. On the basis of overseas research 25-30% of post adoption placements may require support however, practice is different in the UK and our estimates are that approximately 15% may be impacted in the Australian context (Selwyn, Wijedasa et al. 2014). Barnardos is currently conducting research into the Outcomes of Open Adoption and we will have more precise information on children and peoples’ support needs by the end of
- We would point out that this is a specialised area and many practitioners will not be trained to understand the unique issues related to adoption. We would draw your attention to a recent report on the support needs of children post-adoption which describes the psychosocial challenges faced by these children: https://engonetac.blob.core.windows.net/assets/uploads/files/Assets/Adopt%20Change%2 0Post%20Adoptive%20Research%202016.pdf
Young people at risk of homelessness
We are seeing mental health conditions in the majority of young people presenting at our programs to prevent youth homelessness and there is an unmet need for support for this group. Many of these young people have a history in out of home care (as described above) or have suffered disruption of family relationships during adolescence. Our programs report a high incidence of young people with mental health conditions caused by Post Traumatic Stress
Disorder (PTSD) leading to suicide, self-harm ideation, and inability to self-regulate
behaviour. Attachment disorders due to childhood abuse and neglect, and psychosis caused by drug taking is also rife.
Our NSW programs find it is very hard to obtain support services for these young people as there are very few beds in psychiatric wards for adolescents. Our experienced youth workers are highly frustrated at the level of support available to young people with mental health conditions. Below is feedback from one of our experienced Barnardos youth workers:
Some young people require 1 on 1 support….Mental Health professionals promise Safety Plans that rarely get made. Young people are sent home still “at risk” due to lack of facilities and
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extra Barnardos staff need to be rostered so the young people can be monitored properly. If sent home before they are ready and workers call an ambulance when a young person tries to seriously self-harm, police arrive as well (called by the Ambulance service) which can be very traumatic. Mental Health staff visit our residential unit but when things get serious it is very difficult to get support; a young person may see 4 different people over 4 visits (Senior Manager Adolescent Programs).
We would point out recent statistics on the numbers of young people with mental health conditions who present for assistance at specialist homelessness services, indicating that many young people with mental health conditions in the community require greater support than is available: 43,165 young people presented alone to specialist homelessness services in 2015/16 (a rate of 1.8 per thousand young people) and one in four of the people presenting to homelessness services was suffering a mental illness last year.
(http://www.aihw.gov.au/homelessness/specialist-homelessness-services-2015 16/presenting-alone/)
Most important for consideration by NDIS is that many of these young people are currently turned away from services each day (specialist homelessness services turned away 256 of its total number of clients each day).
Parental mental health conditions: The impact on children and the difficulty of getting assistance
The impact of parental mental health issues on children is one of the major reasons bringing families to the attention of child welfare workers. Internationally, mental illness has been estimated to account for between 10-30% of child protection work (Darlington, Feeney et al. 2004). In the UK there is an increasing number of case reviews of child deaths with serious injuries that appear to be linked with parental mental health issues (Webber, McCree et al. 2013). It is estimated that between 21-23% of families have at least one parent with a mental illness in Australia (Reupert, Foster et al. 2011). The episodic and unpredictable nature of mental illness is a cause of concern in relation to the safety of children and there is the real possibility of significant neglect (which can cause developmental delay and, in the worst case, death).
As with the discussion above on children in out of home care, the work that Barnardos does with families is primarily focused on the children’s welfare and our caseworkers do not have specialist expertise to support for psychosocial disability amongst parents with mental illness. Furthermore, we are limited as to the amount of time that we can spend with such parents under the terms of some State grants (for example, many family support programs dictate time limits for interventions).
Psychosocial support for parents with mental health conditions is important to assist in preventing deteriorating parenting capacity however, it can be difficult to find. Barnardos role is to support the children of parents with mental illness – not the parents over the long-term. Our work then involves developing safety plans and putting in place a network of adults that can be drawn on by the child. Children living under these conditions often carry a heavy load of household responsibilities including, having to feed themselves (adequate nutrition for children frequently requires ongoing careful monitoring when parents have psychosocial disability) and care for younger siblings. We also work with the unique problems that these children may experience such as living with stigma, not being able to socialise with friends, social isolation and falling behind at school. Studies of carers who are adolescents show typical
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adolescent concerns are about peers, worries about the person cared for, grief, loss and trauma (such as homelessness, sexual abuse and violence) (Cree 2003).
Much of this work is very complex because it frequently also involves a number of difficult social problems including family violence. Many parents suffer from mental health conditions which are not necessarily seen as being related to violence in the home (Humprhreys and Thiara 2003). Women are most likely to be the victims of intimate partner violence. Men may also experience violence in the home but at comparatively lower rates (Hegarty, Tarzia et al. 2016). Parents who have experienced violence commonly develop symptoms of anxiety, depression and/or post-traumatic stress disorder (Hegarty, Tarzia et al. 2016) and require long-term support. These families can be very complex for service and support systems to assess (Laing, Irwin et al. 2010) and there is the danger that their psychosocial support needs may not be seen as an important assessment requirement. Goodman, Fels Smyth et al. (2009) argue that “reach[ing] across silo’s and systems, crossing organisational cultures to respond to the survivor” (p.320) is imperative for meeting the needs of survivors of intimate partner violence, therefore, collaboration between NDIS psychosocial support, domestic violence services and child welfare services is at the root of responding to the psychosocial needs of parents with mental health concerns due to violence in the home.
Overall we see a huge need for support for parents with psychosocial disabilities related to mental health conditions. We believe that the NDIS should look to address this need. We would also point out that some communities experience particular problems with parental mental health conditions and their circumstances are of particular concern to Barnardos. One third of Aboriginal people over 15 reported high levels of psychological distress – 2.5 times higher than in non-Indigenous Australians.
(http://mentalhealthcommission.gov.au/media/39280/NMHC_ReportCard_2012_01_ATS I_peoples.pdf)
We would also draw your attention to a recent report on the unmet support needs of parents with mental health conditions in the refugee community. (Research Report: Refugee
Communities, Intercultural Dialogue – Building relationships, building communities.
Available to download at: http://www.acu.edu.au/565916). Nearly a third of the families in this study showed multiple and complex issues including physical and mental health problems, intellectual disability and family violence.
Summary and Recommendations
The experience of Barnardos Australia in supporting and providing services to children, young people and families affected by psychosocial disabilities indicates that improvements can be made to the NDIS by recognising and addressing the following issues:
the need to see psychosocial disability as a clear priority issue for NDIS (not just when it is associated to a physical disability). the need to recognise the long-term needs and complexity of problems of these people, which are more than can be offered through State and Territory mental health and Medicare funded services. that financial disadvantage, and the mental health condition itself, can be a barrier to accessing NDIS.
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Thank you for the opportunity to provide this submission.
Barnardos Australia
References:
Anda, R. F., V. J. Felitti, J. D. Bremmer, J. D. Walker, C. Whitfield, B. D. Perry, S. R. Dube and W. H. Giles. (2006) ’The enduring effects of abuse and related adverse experiences in childhood ’ Eur ArchPychiatrry Clin Neurosci, 256, pp. 174- 186.
Australian Institute of Health and Welfare (2016). ‘Child Protection 2014-15.’ Retrieved 29th May 2016, from http://www.aihw.gov.au/child-protection/.
Bonomi, A. E., M. L. Anderson, R. J. Reid, F. P. Rivara, D. Carrell and R. S. Thompson. (2009) ‘Women’s Stories of Collaboration Between Domestic Violence and Mental Health Services.’ Communities, Children and Families Australia, 5(2), pp. 18 - 30.
Clearinghouse, A. D. V. a. F. V. and The University of New South Wales. (2011) The impact of domestic violence on children: A literature review. University of New South Wales.
Cree, V. E. (2003) ‘Worries and problems of young carers: Issues for mental health.’ Child and Family Social Work, 8, pp. 301-309.
Darlington, Y., J. A. Feeney and K. Rixon. (2004) ‘Complexity, conflict and uncertainty: Issues in collaboration between child protection and mental health services.’ Children and Youth Services Review, 26, pp. 1175-1192.
Felitti, V. J., R. F. Anda, D. Nordenberg, D. F. Williamson, Q. M. Spitz, V. Edwards, M. P. Ross and J. S. Marks. (1998) ‘Relationship of childhood abuse and household dysfunction to many leading causes of death in adults.’ American Journal of Preventative Medicine, 14(4), pp. 245-258.
Goodman, L. A., K. Fels Smyth, A. M. Borges and R. Singer. (2009) ’When Crises Collide:
How Intimate Partner Violence and Poverty Intersect to Shape Women’s Mental Health and
Coping?’ Trauma, Violence, & Abuse: A Review Journal, 10(4), pp. 306-329.
Hambrick, E. P., S. Oppenheim-Weller, A. N’zi and H. Taussig. (2016) ‘Mental health interventions for children in foster care: A systematic review.’ Children and Youth Services Review, 70, pp. 65-77.
Hegarty, H., L. Tarzia, L. Hooker and A. Taft. (2016) ‘Interventions to support recovery after domestic and sexual violence in primary care.’ International Journal of Psychiatry, 28(5), pp. 519 - 532.
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Humprhreys, C. and R. Thiara. (2003) ‘Mental health and domestic violence: “I call it symptoms of abuse”.’ British Journal of Social Work, 33, pp. 209-226.
Its Allright (2013). Retrieved 21st August 2013, from http://www.itsallright.org/factsheets.php.
Laing, L., J. Irwin and C. Toivonen. (2010) ’Women’s Stories of Collaboration Between
Domestic Violence and Mental Health Services.’ Communities, Children and Families
Australia, 5(2), pp. 18 - 30.
McDowall, J. (2011) Transition from care in Australia. Report Card. CREATE.
Mendes, P. and B. Moslehuddin. (2004) ‘Graduating from the child welfare system: a comparison of the UK and Australian leaving care debates.’ International Social Welfare, 13, pp. 332-339.
Mendes, P. and B. Moslehuddin. (2006) ‘From dependence to interdependence: Towards better outcomes for young people leaving state care.’ Child Abuse Review, 15, pp. 110-126.
NSW Family and Community Services. (2013) ‘Child Deaths 2013 Annual Report Learning to Improve Services.’ pp.
Reupert, A., K. Foster, D. Maybery, K. Eddy and E. Fudge. (2011) ’‘Keeping families and children in mind’: An evaluation of web-based workforce resources.’ Child and Family Social Work, 16, pp. 192-200.
Selwyn, J., D. Wijedasa and S. Meakings. (2014) Beyond the adoption order: Challenges, interventions and adoption disruptions. Department of Education, University of Bristol
School for Policy Studies
Tarren-Sweeney, M. (2008) ’ Retrospective and concurrent predictors of the mental health of children in care.’ Children and Youth Services Review, 30(1), pp. 1-25.
Tarren-Sweeney, M. and P. Hazel. (2005) ‘Mental health of children in foster care and kinship care in New South Wales, Australia.’ Journal of Paediatrics, 42, pp. 89-97.
Tilbury, C., J. Osmond, S. Wilson and J. Clark. (2007) Good Practice in Child Protection. Frenchs Forest, Pearson.
Tregeagle, S., L. Cox, C. Forbes, C. O’Neil and C. Humphreys. (2011) ’Worker time and the cost of stability ’ Children and Youth Services Review, 33, pp. 1149-1158.
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Webber, M., C. McCree and P. Angeli. (2013) ‘Inter-agency joint protocols for safeguarding children insocial care and adult mental-heatlth agencies: A cross-sectional survey of practitioner experiences.’ Child and Family Social Work, 18, pp. 149-158.
Appendix
For the purposes of this submission mental health conditions are defined as a condition affecting thinking, feelings and actions. Under this banner we include Anxiety disorders which are defined as including generalised anxiety, obsessive compulsive disorder, social anxiety, panic disorder and phobias. It is estimated that around 14% of Australians experience an anxiety disorder over a year (Its Allright 2013). Depression - is estimated to affect one in five people at some time in their lives (Tilbury, Osmond et al. 2007) and 6% of the adult population every year (Its Allright 2013). Bipolar disorder- estimated to affect 1% of the population, this disorder most commonly presents as depression but there are also hypomanic and manic episodes. Schizophrenia- also affects 1% of the population and is the most common form of psychosis characterised by hallucinations, delusions, disorganised speech,
grossly disorganised or catatonic states. (from Tilbury, Osmond et al. 2007) Eating
disorders- are characterised by obsessive thoughts about food and body weight, this includes limiting food (Anorexia nervosa), eat a lot and purge (Bulimia) or often overeat (Compulsive overeating).
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