Submission to the Joint Standing
Committee on the NDIS Inquiry into Current Scheme Implementation and Forecasting for the NDIS 21 February 2022
Introduction
Families where a Parent has a Mental Illness (FaPMI)-NDIS Working Group
(FaPMI-NWG)
This submission is made on behalf of the Families where a Parent has a Mental Illness (FaPMI) NDIS Working Group, Victoria (see Appendix 1 FaPMI NDIS Advocacy Statement).
The FaPMI program aims to reduce the impact of parental mental illness on all family members through timely, coordinated, preventative and supportive action within adult mental health services (AMHS).
This submission represents the views of the FaPMI-NWG and not necessarily the views of the organisations members are aligned with.
Intergenerational impact of psychosocial disability
Children of parents receiving psychosocial disability support are 2.5 times more likely to require the same support late in life^1.
Over one million Australian children have parents with a mental illness^2 and are twice as likely to have poorer social, educational, developmental and mental health outcomes across their childhood, and are overrepresented in all service sectors.^3
These outcomes are not inevitable.
Providing parents with the supports they need to look after themselves and parent well reduces these risks.^4
The NDIS experience for parents with a psychosocial disability
Family is the most salient interpersonal context for many people with psychosocial disability; for many, it is impossible to separate their own recovery from the
^1 Cobb-Clark, Dahmann, Salamanca and Zhu (2017) Intergenerational Disadvantage: Learning about Equal Opportunity from Social Assistance Receipt, Melbourne Institute Working Paper No. 28/17 October 2017
^3 Mayberry, D and Reupert, A. (July 2018). The number of parents who are patients attending adult psychiatric services, Current Opinion in Psychiatry. 31 (4), p.358-362
^4 https://aifs.gov.au/cfca/publications/assessing-and-responding-parenting-support-needs-disad
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functioning of their family or their responsibilities as parents.^5 However, NDIS participant parents are:
a. Not asked about their parenting roles in planning discussions; and are
b. Often afraid to say their disability affects parenting for fear they will be judged a “bad” parent and have often learnt not to disclose vulnerabilities.
Even when parents are able and/or supported to discuss parenting supports, getting this recognised and addressed in NDIS plans is a complex process.
For example, even though NDIA recognised a participant was unable to prepare meals they approved delivered meals for the single mother but not her dependent child.
“Meal deliveries will only be provided for the NDIS participant and not their dependents in accordance with the NDIS policies.”
- Email from Local Area Coordinator
Scheme Implementation and Forecasting for the NDIS
The FaPMI-NWG commends the work the NDIA has undertaken to improve outcomes for people with psychosocial disability, including the introduction of Recovery Coaches and the Recovery Oriented Framework.
However, the support needs of parents with psychosocial disability and their dependent children remains unrecognised and unaddressed by the NDIS.
Given current evidence on the intergenerational impact of psychosocial disability, failure to acknowledge family relationships and child-rearing responsibilities as central to recovery and to prevent further disability,
a. undermines the NDIS’s insurance principles and sustainability goals; and
b. discriminates against best outcomes for parents who experience a disability.
Summary
Early investment in supporting parents reduces future demand on the NDIS.
Individualistic (rather than individualised, family-inclusive) approaches to planning means evidence-based supports for parenting roles are not explored or addressed in planning discussions or plan budgets.
The Recovery Oriented Framework is silent on the issue of supports for parenting and the multiple stigmas faced by parents with a psychosocial disability.
NDIS operational guidelines and policies do not recognise the impact of psychosocial disability on dependent children, nor the benefits of investing in parenting supports to reduce future disability.
^5 Price-Robertson, Obradovic and Morgan (2017) Relational recovery: beyond individualism in the recovery approach, Advances in Mental Health, 15 (2), p.108-120,
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Recommendations to support NDIS sustainability
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The NDIA recognise the intergenerational impact of psychosocial disability and the unforeseen negative consequences of the Scheme’s individualistic approach on families of people with psychosocial disability.
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NDIS policy and operational guidelines articulate psychosocial support for parenting roles and its role in reducing future demands on the Scheme.
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NDIS Operational guidelines, practice advice, and training to address barriers to getting parenting supports in NDIS plans (to address lack of knowledge and confidence for LAC/Planners).
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The NDIA collaborate with subject matter experts:
a. To determine the extent and distribution of children and young people in families where a participant parent has a psychosocial disability;
b. To utilise findings to assist the service provider market to develop specialised supports to participants with psychosocial disability that address parenting related goals (see Appendix 2 Parenting, psychosocial disability and the NDIS); and
c. Design and deliver awareness raising education and advocacy about the compounded stigmas experienced by parents with a psychosocial disability.
The FaPMI-NWG’s responses to the Joint Standing
Committee’s Terms of reference (TOR)
TOR A: The impact of boundaries of NDIS and non-NDIS service provision on the
demand for NDIS funding:
Disability related, parent specific support is unavailable both inside and outside the NDIS for parents with a psychosocial disability.
It has been impossible to determine who is responsible for the provision of parenting supports for parents with a psychosocial disability.
This is despite:
a. The Convention on the Rights of Persons with Disabilities requiring signatories “to render appropriate assistance to people with disability in the performance of their child-rearing responsibilities”^6, and
b. The NDIS Planning Operational Guidelines Appendix 1 advising “specific parenting training programs, one-on-one or in-home training for parents with disability or training that is specific to a participant’s disability”^7 be funded by NDIS.
^6 Article 23 of the UN Convention on the Rights of Persons with Disabilities, https://www.un.org/development/desa/disabilities/ convention-on-the-rights-of-persons-with-disabilities.html
^7 https://www.ndis.gov.au/about-us/operational-guidelines/planning-operational-guideline/planning-operational-guideline-appendix-1- table-guidance-whether-support-most-appropriately-funded-ndis
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We are yet to see parenting support discussed or included in plans for participants with psychosocial disability.
Perhaps this is a result of the NDIS Appendix 1 only addressing parenting support under “Child protection and family support” rather than “Mental health” and, likely, a moot point as the psychosocial support services that once provided specialised parenting support ceased to exist after the NDIS rolled out.
There will also be many parents with a mental illness that will not meet the NDIS Access criteria of permanency and/or substantially reduced functional capacity. For these parents outside the NDIS, there are no parenting disability specific support services available to them.
Without evidence-based support that promotes parents looking after themselves and to parent well, families are at increased risk of exacerbated mental distress, family disruption, deterioration and increased disability and demand on services (NDIS and mainstream services - health, housing, justice, education, family support and employment).
Early investment supporting parents reduces future demand on all services. The consequence of not addressing this issue also has costs and impacts.
The FaPMI-NWG supports recommendations acknowledged in the Joint Standing Committee’s interim findings that “more research is needed into best practice early intervention, and support required for people to transition out of individual funding with the NDIS”^8.
While ‘early intervention’ in NDIS largely refers to children with a disability, research to understand and design evidence-based support to address the intergenerational impact of mental illness should be considered early intervention to reduce future demand on the NDIS.
TOR B: The interfaces of NDIS service provision with other non-NDIS services
provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services:
Taking an integrated approach to minimise siloed approaches and duplication of services, and improve the interface and support cross-sector collaboration is particularly pertinent to families where a parent has a psychosocial disability.
Groups working with mental health consumers have long recognised that the particular barriers to engagement experienced by mental health consumers necessitate all service providers to work closely together to address service gaps and achieve improved outcomes for these consumers.
Partnerships are a key mechanism to achieve a more consolidated and collaborative service approach to address service gaps and to pool resources to meet the needs of those requiring parenting supports, and accessing services^9.
^8 https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/GeneralIssues/ Report_2021/section?id=committees%2freportjnt%2f024620%2f77999#footnote35target
^9 Victorian Council of Social Services and Victoria Department of Health and Human Services, 2009.
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requires resources and relational approaches^10 that are seldom acknowledged by the NDIS in plan budgets.
“In my experience, supporting consumers to enter the Scheme and getting appropriate supports can be a complex process (because there is a process) but getting parenting supports is difficult (read “impossible”) - because there is no process to support this.
Parenting supports aren’t recognised in the Psychosocial Disability TSPs - (decision making guides used by LACs and Planners). TSP’s aren’t legislated so, technically, planners shouldn’t rule out supports that aren’t in TSPs (but still meet reasonable and necessary) but they do.
And caring roles aren’t included in the NDIS Outcomes Framework and - if they’re not measuring it, they’re not interested in it. I haven’t got supports into a plan or found someone who has - and I’ve really tried!”
- Email from mental health clinician
Note: A Typical Support Package (TSP) is a dollar amount generated for an individual based on selected criteria or, more broadly, the typical supports included in a participant’s NDIS plan. The type of disability, the severity of the functional impact, a person’s age, and level of existing support determine the TSP.
TOR C: The reasons for variations in plan funding between NDIS participants with
similar needs:
Getting the right supports in plan funds requires participants to be able to articulate and justify their needs.
For people with a psychosocial disability, the functional impairments that make them NDIS eligible are the same reasons they struggle to articulate needs, connect with supports and utilise plan funds, for example:
a. Difficulties establishing trust, engaging with others and misinterpreting events b. Lack of informal networks c. Impaired concentration, decision-making and organisational skills, motivation and judgement d. Difficulty coping with situations involving stress, pressure or performance demands e. Impulsivity f. Slowed thoughts g. Understanding information clearly from others h. Engaging with or understanding written material i. Managing correspondence j. Holding reciprocal conversations k. Articulating needs and seeking help l. Being understood by others m. Regulating emotions and managing interpersonal conflict n. Navigating service systems
^10 Brophy, L, Hodges, C, Halloran, K, et al. 2014, Impact of care coordination on Australia’s mental health service delivery system
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On top of these functional difficulties, parents with a mental illness may find it difficult to speak up about their parenting needs. Their experiences may range from never having been asked about their role as a parent, to having been questioned about their child’s family life by workers, to having been thoroughly investigated in their home by child welfare workers. Consequently, parents may think talking about parenting is not important, inappropriate, or even risky (especially if custody of their child is in question).
Asking questions about needs, goals and valued roles is important, but for parents with a mental illness, being asked the ‘right questions’ is even more important^11.
In planning discussions, participants are asked a question (“who is in your life?”) that then populates a sentence or two in the final NDIS plan, under the headings of ‘About me’ and ‘My family and friends’. Children are seen as “informal supports” rather than a trigger to explore caring roles and any barriers to fulfilling these. Parenting tasks are viewed as less important than “social and economic participation”.
For example: a single parent who identified her NDIS goal as to “be the best mum I can to my 11 year old son” requested an increase in Transport Allowance to facilitate extra meetings and engagement with her son’s school, to attend a parenting skills group and an average of four health or welfare related appointments per week.
While the planner was sympathetic, she advised the mother could only get the increase if she was working or volunteering - despite these activities requiring less travel. The same mother was determined ineligible for the NDIS twice when her “substantially reduced functional capacity” was described in relation to her caring roles and her son. When the supporting clinician removed these details, the mother was granted access to the Scheme.
We need mental health frameworks that resist the stereotype of consumers as single, childless people for whom meaningful recovery revolves mostly around independent living and vocational engagement.
p.118 Price-Robertson, Obradovic and Morgan (2017) Relational recovery: beyond individualism in the recovery approach, Advances in Mental Health, 15 (2), p.108-120,
Anecdotally, we know parents with a sensory or intellectual disability are more likely to have their parenting needs discussed and supports funded than parents with a psychosocial disability.
It appears parents with a mental illness are being discriminated against based on their disability type, and clarification from the NDIS on how it supports all participant parents in their caring roles is required.
^11 Goodyear, M. Hill, T., Standards of practice for adult mental health workforce: Meeting the needs of families where a parent has a mental illness. International Journal of Mental Health Nursing (2015) 24 169-180
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Appendices
Appendix 1 - FaPMI NDIS Advocacy Statement
Families where a Parent has a Mental Illness (FaPMI) Program advocating for National Disability Insurance Scheme (NDIS) funding and resources to best support people who are parents and the needs of their children and families.
Advocacy Statement
FaPMI strongly advocates for the health, wellbeing and growth of families where parental mental illness is present, and embraces supporting the needs of all family members to live rich, meaningful and contributing lives, that benefit their personal recovery.
The NDIS was created to provide support for people with disability and their families and carers, to achieve the best outcomes for their lives by building skills and independence.
In the context of this advocacy statement, mental illness can be defined as a psychosocial disability. Therefore, consideration needs to be taken into how the NDIS can best support the needs of the person experiencing the psychosocial disability and the person’s child/ren, family and carer/s. Further complexity can be added when a child or children of the person with the psychosocial disability also experience disability and/or developmental delay and require connection with and support through the NDIS.
This advocacy statement aims to achieve appropriate support for all families where a parent experiences a mental illness/psychosocial disability, to live their best lives through family-focused supports and interventions being endorsed and sustained by the NDIS.
Key points
Family
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Recovery occurs in a family context^1
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Families need to be supported to identify what recovery means for them^1
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Family strengths, including the parent-child relationship need to be acknowledged and built upon^1
Parent
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The rights of a parent with a disability, to parent, is a basic human right
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The relationship between a parent and their child/ren’s wellbeing is closely linked to their own improved mental wellbeing
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Supported parenting enables a parent/family to lead a rich and meaningful life
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Families, parents and children will need help and support to develop skills and to achieve the best possible outcomes in their lives
Children
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Parental mental illness can have short-, medium- and long-term effects on children
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Childhood experiences can have lasting effects on brain development, psychological and social functioning, self-esteem, mental and physical health, sleep, risky behaviours such as substance use, relationships and life expectancy.
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Best practice in early childhood support is a family centred approach and early intervention.
Supporting Documents and References
- Supporting recovery in families affected by parental mental illness (2016)
https://aifs.gov.au/cfca/publications/supporting-recovery-families-affected-parental-mental-illness
- The Royal Australian New Zealand College of Psychiatrists – Position statement: Children of parents with mental illness
- Working together with families and carers: Chief Psychiatrist’s guideline (2018)
- Convention on the Rights of the Child (Ratified 1990)
https://www.ohchr.org/en/professionalinterest/pages/crc.aspx
- Convention on the Rights of Persons with Disabilities (2006)
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Appendix 2 - Parenting, psychosocial disability and the NDIS
Goals
Barriers due to disability
Supports needed
Build capacity to manage parenting responsibilities — including:
- Parent-child attachment
- Bathing & dressing children
- Positive relationship with school
- Household tasks
- Assisting homework
- Literacy & numeracy skills
- Meal preparation
- Accessing community resources & activities
- Routines to support education & community access
- Transport
- Maintaining stable housing
- Behaviour management strategies
- Managing finances & costs associated with children’s needs
e.g. Being understood by children Holding reciprocal conversations Reading & understanding verbal & non-verbal cues of children Engaging with or understanding written material Unable to carry baby Unable to attend to child’s needs at night Unable to wake in morning Impaired concentration, memory, decision-making & organisational skills Unable to attend school meetings & parent-teacher interviews Lack of social/peer network and parenting mentors Unable to establish and/or maintain appropriate behavioural limits Work/Neuropsychological assessment & therapeutic support to address functional impact of disability on parenting tasks. Individual skills development & training — including strategies to assist children to communicate with parent, and to build friendships Assistive Technology to provide prompts for providing care for children’s physical needs. Assistance to navigate service systems connected to child’s development & well-being — e.g. health, education Support & skill development to build relationship & communication with school Assistance with daily personal activities — bathing, dressing children, assisting with homework Assistance with household tasks — cleaning, laundry, garden/building maintenance Assistance to build age-appropriate domestic & community skills in older children. Assistance with daily living — organise medical appointments, support to sort & manage mail, support to pay bills Support for access to and participation in literacy & numeracy skills training Preparation & delivery of meals (cost of food not included) Transport allowance Support to assist parent to transport children to school & community activities Build skills to maintain tenancy Decision-making support Parenting coach to understand developmental needs of children & what parent can provide. Financial counselling, skill development & assistance to navigate service system Improve participation in family life/improved relationships Unable to explain psychosocial disability & its impact on/to family & children Difficulty regulating emotions & managing interpersonal conflict Unsafe relationships Family psychoeducation Support & assistance to develop social skills and participation in everyday social situations & daily living Assistance & skill development in advocating for self and children Support for collaborative self-care strategies Support for relationship development Support for family & carers to maintain health & wellbeing Skills development & education for family & carers Vow
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