National Advocacy Collective:

Supporting the rights of parents with an intellectual disability

Submission to the Department of Social Services: General Foundational Supports consultation

December 2024

Acknowledgements

We pay our respects to the Traditional Owners of the land on which this submission was written. We acknowledge the deep spiritual connection to this land of Aboriginal and Torres Strait Islander peoples, and we extend our respects to community members and Elders past and present.

We acknowledge and thank the parents with an intellectual disability from the National Advocacy Collective who shared their stories in this submission. This submission has been possible because of your generosity in sharing your experiences.

We also recognise and stand in solidarity with the efforts of self-advocates who have courageously told their stories and worked hard over many years for equality and human rights for all.

Contents

• About the National Advocacy Collective (NAC)
• Current NAC members
• Contact
• Overview of recommendations
• Background
• Gaps in service provision
• The need for General Foundational Supports for parents with an intellectual disability
• The need for specialist advocacy organisations to deliver General Foundational Supports
  • 1. Accessible information and advice
  • 2. Supported decision-making
  • 3. Independent advocacy and self-advocacy
  • 4. Peer support
  • 5. Individual, family and community capacity building
• Support during the transition to General Foundational Supports
• References

About the National Advocacy Collective (NAC)

The National Advocacy Collective (NAC) is a group of people across Australia who support the rights of parents with an intellectual disability.

We know that there are lots of barriers for parents with an intellectual disability. We work together to change things and talk with governments to make positive change happen.

The NAC was started by a small group of allies and supporters of parents with an intellectual disability in 2022.

Parents with an intellectual disability are at the centre of all the National Advocacy Collective’s work. Positive Powerful Parents, a self-advocacy group in Victoria, has been part of the group since it began, and other parents have joined since then. We would like to have as many parents with an intellectual disability part of the NAC as possible.

Our goal is to make sure the human rights of parents with an intellectual disability in Australia are recognised and upheld, and that they have the support they need to be the parents they want to be. We want government to change systems so that they are fair and give parents support they need.

We believe that:

• Everyone has the right to parent their children.
• People with an intellectual disability should be able to have and raise their children with the support they need.
• The rights of people with an intellectual disability to parent should be accepted as part of life, like they are for everyone else.
• Wherever possible, families should be kept together, and have the support to do this safely.

Current NAC members

• ACT Disability and Aged Care Services (ADACAS)
• ACT Down Syndrome & Intellectual Disability Association
• Community Living Association
• Developmental Disability WA (DDWA)
• Family Inclusion Network, Southeast Queensland
• Family Inclusion Strategies in the Hunter (FISH)
• First Peoples Disability Network
• Inclusion Australia
• Inclusion Northern Territory
• Independent Family Advocacy and Support (IFAS)
• Victoria Legal Aid Intellectual Disability Rights Service (IDRS)
• Kathleen Fitt, RMIT
• Life Without Barriers
• Linda McKey: Family Support Services University of Sydney
• Margaret Spencer, University of Sydney
• Melissa O’Donnell, University of South Australia
• Moreton Bay Ability Network
• NSW Council for Intellectual Disability (CID)
• Parenting Research Centre
• Parent To Parent Queensland
• Positive Powerful Parents (PPP)
• Queensland Disability Network
• Queensland Independent Disability Advocacy Network (QIDAN)
• South Australian Council on Intellectual Disability (SACID)
• Speak Out Advocacy
• STAR Victoria
• Susan Collings, Western Sydney University
• Victorian Advocacy League for Individuals with Disability (VALID)
• Women with Disabilities Australia (WWDA)
• First Peoples Disability Network
• Moreton Bay Ability Network
• NSW Council for Intellectual Disability (CID)
• Parenting Research Centre
• Queensland Disability Network
• Queensland Independent Disability Advocacy Network (QIDAN)
• South Australian Council on Intellectual Disability (SACID)
• Speak Out Advocacy
• STAR Victoria
• Susan Collings, Western Sydney University
• Victorian Advocacy League for Individuals with Disability (VALID)
• Women with Disabilities Australia (WWDA)

Contact

Inclusion Australia currently provides secretariat support for the NAC. To contact the NAC, please get in touch with Dr Amy Conley Wright, Policy & Advocacy Manager, at Inclusion Australia (amy.conleywright@inclusionaustralia.org.au).

Overview of recommendations

The NAC recommends that General Foundational Supports must be fully resourced to:

1. Meet the needs of parents with an intellectual disability, including the needs of First Nations parents.

   This will enable organisations—such NAC members—who have long histories of providing local information, peer support and facilitating self-advocacy to be adequately resourced to deliver General Foundational Supports and to be able to use existing knowledge and capacity to provide the local supports that are required.  

   In addition, governments must work with those with deep, historic experience with this cohort to build General Foundational Supports that are genuinely inclusive, meet needs and are fit-for-purpose. Those organisations, including NAC members, are well-placed to support parents with an intellectual disability to be part of co-designing supports to meet their needs.

2. Develop accessible, independent and culturally appropriate information.

   This information must be co-designed by parents with an intellectual disability, including First Nations parents, who must be renumerated fairly.

3. Develop supported decision-making resources and capacity-building activities.

   This must include respect for First Nations cultural perspectives on decision-making and recognition of different cultural understandings and approaches to decision-making for First Nations parents with a disability.

4. Ensure access to independent advocacy and self-advocacy.

   Independent advocacy is crucial to promote the rights of parents with an intellectual disability and to make them feel heard and supported while navigating systems of support.

   Access to independent advocacy and building self-advocacy skills must be culturally grounded, with a focus on strengthening individual and collective empowerment, particularly in communities with limited access to mainstream services.

5. Provide access to peer support services.

   This is an evidence-based, essential tool for parents with an intellectual disability, who often need practical help to create a supportive community around their family. Peer support also plays a crucial role in providing culturally relevant, community-driven assistance for First Nations parents with an intellectual disability.

6. Provide access to individual and family capacity building through targeted parenting support programs.

   There is strong evidence for what works to support parents in developing new skills to meet their child’s needs. With the right individual and family capacity-building activities, matched to the learning needs of the parent, parents with an intellectual disability can and do help their children thrive.

7. Provide transitional support to disability-led organisations and ensure that no parent with an intellectual disability is worse off during the transition to General Foundational Supports.

   Any gaps in provision of information, self-advocacy or peer-support will lead to significant negative outcomes. For First Nations parents, this could include gaps in information, resources in language, and the loss of culturally tailored supports. People experiencing crisis, such as parents involved in the child protection system, would be particularly disadvantaged by any gaps in service provision.

Background

Parenting is a fundamental and ordinary part of daily life for millions of Australians. All parents need and benefit from formal and informal support at different times.

Evidence consistently shows that ongoing, family-centred, and accessible support for the challenging and essential work of parenting leads to better outcomes for parents and children.1

Parents with an intellectual disability have the same rights as others to access support for their parenting. These rights are articulated in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), particularly Article 12—Equal recognition before the law,2 which affirms the right to make one’s own decisions, and Article 23—Respect for home and the family.3

Further, the rights of all children to remain with their families and for parents to receive appropriate support for child-rearing responsibilities—except in cases of neglect or abuse where competent authorities lawfully determine separation is in the best interests of the child—are expressed in the United Nations Convention on the Rights of the Child, especially in Articles 9, 16, 18 and 20.4

However, these fundamental rights are not being upheld in Australia.

Gaps in service provision

Despite being a very small percentage of the parental population in Australia at about 0.4%, or around 17,000 parents,5 parents with an intellectual disability experience alarming rates of child removal and are overrepresented within the child protection system.6

Parents with an intellectual disability also experience poor early engagement by services and a lack of cross-agency collaboration. For example, between the NDIS and mainstream services, like antenatal education and care, or early-childhood and parenting support services.7

A consistent finding of parliamentary and independent inquiries over the last 20 years is that mainstream and disability support services lack the capacity, rights-based knowledge and training to provide parenting support to parents with an intellectual disability.8 So far, the NDIS has not addressed this major gap in service provision.9

Recent research commissioned by the Disability Royal Commission stated that it was not clear from an extensive literature review that NDIS support is being offered to parents with disability—rather, the emphasis tended to be on providing NDIS support to children involved in child protection systems, rather than to parents.10 This “child only” approach ignores good practice evidence in child protection settings, which supports a child and

parent inclusive approach. There is strong evidence that children are safer when their parent(s) are also supported.11

Because of these issues, accessing support for parenting has become a lottery, not a right.

While there are several trusted organisations across Australia with long histories of providing advocacy and support services to parents with an intellectual disability, as we will discuss below, those organisations rarely have the required level and stability of funding to meet community need.

Outside of those organisations with deep expertise, there are very few services available nationwide (in both the disability services sector and mainstream services) who have staff trained in providing best practice when working with parents with an intellectual disability.

In addition, there are a range of systemic disadvantages that are disproportionately experienced by people with an intellectual disability, and especially First Nations people, that present major barriers to parents in being able to access parenting support. These include:

• Higher rates of poverty and financial hardship12
• Lower rates of employment13
• Increased likelihood of a person’s primary income being a government payment, which is very likely to be enough to cover the basics in life14
• Increased social isolation.15

First Nations parents with an intellectual disability face compounded challenges due to historical and ongoing social and economic inequalities. These include financial hardship, exclusion from services, and systemic discrimination, which further impede their ability to access the support they need to parent successfully.16

These inequities and gaps in service provision, coupled with negative community attitudes and a lack of understanding and training on the rights of people with an intellectual disability, means parents with an intellectual disability often:

• Have their parenting capacity questioned or negatively judged
• Receive a lower standard—or total lack—of care in mainstream services
• Are denied supports in their NDIS plan
• Are significantly overrepresented in the child protection system
• Are more likely to have their child removed permanently from their care
• Are less likely to be referred by child protection services to parenting support services
• Are likely to experience differential and/or discriminatory treatment with respect to where, how long and with whom their children are placed following their removal

• Are likely to be met by services and systems with the ableist presumption of incompetence, which results in discrimination and, very often, child removal.17

These experiences are especially likely for First Nations parents and also more likely for parents from Culturally and Linguistically Diverse (CALD) backgrounds. Those experiences were extensively detailed in a Research Report commissioned by the Disability Royal Commission, which is cited throughout this submission.18

For example, First Nations parents with an intellectual disability face higher rates of discrimination and are overrepresented in child protection systems. The lack of culturally responsive supports exacerbates this issue, leading to harmful, discriminatory outcomes and undermining family integrity. A small-scale case file review of parents with intellectual disability engaged in care proceedings reported, “Aboriginal parents were significantly younger than non-Aboriginal parents at initiation of an investigation, twice as likely to be investigated due to concerns about parenting capacity, and more likely to have children removed than non-Aboriginal parents.”19

Considering the scale of systemic disadvantage, it is deeply concerning that the Disability Royal Commission did not adequately address the specific inequities faced by parents with an intellectual disability.20 Despite being a focus of an extensive research report as part of the Royal Commission’s research program, its Final Report lacked recommendations targeted at addressing the systemic disadvantage and ableist professional attitudes this group faces.

It is also concerning that the recent changes to section 10 of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Act 2024 (Cth) seem to present even greater restrictions to accessing parenting supports through the NDIS. This is despite the Department of Social Services’ consultation report on the section 10 lists, which highlighted the need for parenting supports to be made accessible through the NDIS as emphasised in a number of consultation submissions.21

We are concerned that in not allowing parents to access parenting supports via the NDIS, parents will be required to find their own solutions to parenting support either via mainstream platforms (which are not always accessible to or tailored to parents with intellectual disability), or that parenting difficulties will escalate to the point that child protective services or family support services need to become involved. This approach risks stigmatising families, reducing their willingness to seek help. This also problematises help-seeking in relation to parenting, and will contribute to the already extreme overrepresentation of parents with intellectual disability in child protection systems.

The need for General Foundational Supports for parents with an intellectual disability

It is well known that—just like other parents—parents with an intellectual disability can and do parent positively when they receive timely and appropriately-delivered supports (including culturally appropriate supports), combined with informal assistance from family, friends and allies.22

Research demonstrates time and again that parents with an intellectual disability do well when they are given can “practice new skills in their own home, have training matched to individual need, and receive support from workers who understand them and offer help with things they consider a priority”.23

Given the gaps in service provision experienced by parents with an intellectual disability and the subsequent poorer outcomes this group experiences, we believe that General Foundational Supports are key to Australia’s efforts to meet international human rights obligations under the UNCRPD.

The NAC strongly supports the NDIS Review’s Recommendation 1 to ‘Invest in Foundational Supports to bring fairness, balance and sustainability to the ecosystem supporting people with disability’. The Review acknowledged that General Foundational Supports would include peer-support networks, self-advocacy groups, support for decision making and tailored training.  

General Foundational Supports are also vital for empowering First Nations parents with an intellectual disability to fully engage in their families and communities. These supports are crucial for overcoming systemic barriers, such as isolation and limited access to culturally appropriate services, that prevent them from accessing essential resources and participating in family life.24

General Foundational Supports must be resourced to match real community need. This will enable organisations—such as NAC members—who have long histories of providing local information, peer support and facilitating self-advocacy to be adequately resourced to do this work and to be able to utilise existing knowledge and capacity to provide the local supports that are required.  

The NAC believes the following five areas must be targeted in the Government’s investment in General Foundational Supports:

1. Accessible information and advice

2. Supported decision-making

3. Independent advocacy and self-advocacy

4. Peer support

5. Individual and family capacity building.

Importantly, these supports cannot be delivered in siloes—they are interconnected and work best delivered together. These five areas of General Foundational Supports are explained in more detail below.

In designing these General Foundational Supports, we also recommend:

• Parents with an intellectual disability must be specifically engaged, supported and renumerated to contribute to co-design of General Foundational Supports.
• First Nations parents with intellectual disabilities must have cultural leadership in the design and delivery of supports. Cultural protocols, community engagement, and First Nations voices must be central to shaping the services and supports that impact their lives.
• General Foundational Supports must incorporate traditional knowledge and practices to ensure that supports are respectful of, and aligned with, cultural beliefs and values, fostering stronger family outcomes.
• Investment in General Foundational Supports must also consider other relevant NDIS Review recommendations, including those around supporting people to navigate such supports and providing better support for them to make decisions about their lives.

The need for specialist advocacy organisations to deliver General Foundational Supports

We believe that communities need specialised advocacy organisations and individual practitioners with specialist expertise to deliver General Foundational Supports to parents with an intellectual disability. Governments must work with those with deep, historic experience with this cohort to build Foundational Supports that are genuinely inclusive, meet needs and are fit-for-purpose. These organisations are also well-positioned to support parents with an intellectual disability to participate in co-design.

Delivering General Foundational Supports for parents with intellectual disability will require knowledge and expertise that recognises how to provide support to people who have been historically excluded and are still often extremely marginalised.

As such, supporting and building capacity with parents with an intellectual disability takes time, planning and significant resources from both state and national organisations.

This is not only necessary to meet the support needs of the people the NAC works with and represents, but also to build trusting relationships in which people—who have experienced significant marginalisation, discrimination, trauma, and even violence, abuse, neglect or exploitation—feel safe and supported to access information resources, share their

experiences, build their skills in self- advocacy and access services on an equal basis with others.

This work requires an understanding of access and inclusion requirements, the impact of entrenched systemic discrimination and disadvantage, and a specific way of working to ensure inclusion is genuine.

As such, organisations and individuals with specialist expertise like the NAC membership are best and uniquely placed to provide this through our:

• Long-established and well-trusted relationships with our communities
• Skills and expertise in supporting parents with an intellectual disability
• Extensive experience engaging with people with complex needs and with their families
• Support to build the capacity of parents with an intellectual disability and their families to exercise genuine and informed choice about their lives.

1. Accessible information and advice

Accessible, independent information was identified by both the Disability Royal Commission (Recommendation 6.1) and the NDIS Review (Action 1.3 and Recommendation 10) as a vital measure to enable people with disability to live the lives they want and access the services they need.

There is an urgent need to address the current information gap that exists for people with an intellectual disability. Accessible, culturally appropriate information and resources are a right for all parents, particularly those with intellectual disabilities. Evidence shows that a lack of culturally relevant information during the antenatal and family planning stages contributes to First Nations parents being disproportionately affected by child protection systems.25 To ensure information is accessible, it needs to be made available in languages and in multiple formats, including Easy Read.

As the NAC has argued in previous submissions, and in line with the above recommendations, we strongly believe Government must fund the development of accessible, independent information. This information should be co-designed by parents with an intellectual disability, who must be renumerated fairly.

Accessible, co-designed information and advice will provide crucial support and education for parents and expectant parents about what is important to them, including their human rights; expectations during the antenatal and postpartum periods; and what supports and services are available to them throughout their parenting.

Investment in accessible information and advice will also contribute to capacity-building within the disability and mainstream service sectors, where there is currently a significant lack of appropriate knowledge and training on working with parents with an intellectual disability. Practitioners working with parents with an intellectual disability may often

provide ‘information referral’ to the people they work with, and so must be equipped to be able to refer parents to evidence-based, accessible information. This is key to ensure appropriate support for decision-making is available, to enable parents to make informed choices.

2. Supported decision-making

Access to supported decision-making featured strongly throughout many of the NDIS Review’s recommendations. The Final Report describes how the majority of participants in the NDIS require support for decision-making, and yet the NDIS has increased the complexity of decision-making for many.26

It is well known that people with an intellectual disability have higher decision-making support needs than other people with disability. Yet this is generally not recognised within disability-specific or mainstream support services. There are very few resources to support people with an intellectual disability to make decisions about important areas of their lives, such as sexuality and relationships, family planning and parenting.

Evidence shows that supported decision-making is an important safeguard, and that it also creates other forms of safeguarding by furthering empowerment and self-determination. As research commissioned by the Disability Royal Commission explained, supported decision-making creates in the decision-maker:

Greater exercise of choice and control; support to navigate complex systems; assistance to understand information and explore a broad range of options; increased opportunities to make decisions, and a greater likelihood that decisions would reflect their preferences. By having … one’s choice respected, supported decision making was also seen to further confidence, skills in self-advocacy and decision-making, and awareness of individual rights.27

We believe that as part of the investment and development of General Foundational Supports, there must be specific investment in the development of supported decision-making for parents with an intellectual disability through:

• Respect for First Nations cultural perspectives on decision-making, which empowers parents to make informed decisions, while ensuring that their rights and cultural practices are protected and respected in all parenting decisions.
• Recognition of different cultural understandings and approaches to decision making for First Nations people with a disability.
  • Individualised services usually reflect non-Indigenous norms and values about disability and service provision which may be in conflict with First Nations cultural understandings of disability. There is a need for improved

understandings of culturally appropriate decision-making that respects and upholds shared or communal decision-making processes.

• Accessible processes and information across the systems parents with an intellectual disability are likely to engage in, including maternity care, existing parenting supports, NDIS and child protection systems.

• Capacity-building activities for the workforce who are likely to be engaging with parents with an intellectual disability to ensure they are equipped to build their own understandings of the complexity of providing decision support to parents; understand and respond to the information and communication needs of parents; are resourced to provide sufficient time to build trust and meet the support needs of parents. Capacity building in the child protection area is particularly urgent to enable reflective practice, share the evidence about parents with an intellectual disability and prevent discrimination and bias in decision making.

• Supported decision-making resources that are co-designed with and tailored to parents with an intellectual disability.

• Direct supports including peer-led workshops and learning opportunities to build capacity in decision-making for parents.

• For parents without informal supports, access to independent supporters to support decision-making.

3. Independent advocacy and self-advocacy

Access to independent advocacy and self-advocacy is crucial for parents with an intellectual disability, who face entrenched barriers and discrimination across systems, which often extends to the NDIS itself. The NAC discussed this at length in our submission to the NDIS Review.

Independent advocacy and self-advocacy are key tools for First Nations parents with an intellectual disability to navigate systems of support. These mechanisms must be culturally grounded, with a focus on strengthening individual and collective empowerment, particularly in communities with limited access to mainstream services. This requires dedicated funding for community-controlled advocacy organisations.

Self-advocacy groups empower parents to learn about and enact their human rights. By offering supportive environments to develop new skills and share personal experiences, these groups promote capacity-building opportunities where parents build confidence to advocate for themselves across many areas of their lives.

The Disability Royal Commission heard evidence about the importance of self-advocacy (and organisations that facilitate peer support and self-advocacy, such as many NAC member

organisations) in preventing violence, abuse, neglect and exploitation. The Final Report also discussed the crucial role of independent advocacy in the lives of people with disability, and especially in the lives of those with the least access to informal supports and safeguards.28

Targeted investment in independent advocacy and self-advocacy through General Foundational Supports is essential to protect and uphold the rights of people with an intellectual disability to parent and be supported to parent.

4. Peer support

Peer support has been identified as a critical component of the future system of General Foundational Supports. This is essential for parents with an intellectual disability, who often need practical help to create a supportive community around their family, which can be facilitated by peer support groups.

Peer support can be defined as “emotional and practical support exchanged between people who share similar experiences”.29 There are several studies demonstrating that peer support, together with other direct supports like coaching, are more effective for parents with an intellectual disability than parent education alone.30 For many parents, this is because peer support groups lack the ‘power imbalance’ and negative judgements or assumptions that they may experience with professionals who are engaged to support parenting.31

Peer support plays an important role in providing culturally relevant, community-driven assistance for First Nations parents with an intellectual disability. These peer-led initiatives offer critical emotional and practical support and must be fully resourced to meet the needs of First Nations parents.

In the first study of its kind, a forthcoming Australian Research Council (ARC) project led by the University of Queensland in conjunction with NAC members Family Inclusion Services in the Hunter (FISH), Community Living Association (CLA) and Life Without Barriers aims to examine the scope, characteristics and resources needed to build and sustain peer-parent family advocacy in Australia. It aims to strengthen peer-parent and family advocacy capabilities to reduce the incidence and the financial and social costs of children’s removal from families, communities and Country.32

The outcomes and evidence of projects like this must be collated and used as the basis for improved resourcing to enable stronger peer support and family advocacy networks across Australia.

5. Individual, family and community capacity building

All parents need and benefit from formal and informal support at different times to build skills in parenting, and the same is true for parents with an intellectual disability. However,

many parents are not able to access parenting supports to learn and build skills in parenting through the NDIS, and there is a lack of supports available in mainstream services that are accessible and inclusive of parents with an intellectual disability.

A key part of General Foundational Supports is individual and family capacity building, which for parents with an intellectual disability must include targeted parenting support programs.

There is good evidence about what works to support parents in developing new skills to meet their child’s needs. With the right teaching and support strategies, matched to the learning needs of the parent, parents with an intellectual disability can help their children thrive.

There are programs, practices and attitudes that practitioners can bring to their work to support parents with intellectual disability. Research conducted over the past 40 years has provided good evidence about the teaching strategies and programmatic approaches that work best to support parenting for parents with intellectual disability. Evidence shows that using strengths and relationship-based approaches that prioritise parents’ voices and wishes, and recognise and does not blame parents for the structural and social challenges they experience are important.33

When it comes to specific teaching strategies, two review articles published 14 years apart34 summarise what is known about evidence-based parenting interventions for parents with intellectual disability. The messages from these two articles show that home-based, individually tailored, competency-based and skill-focussed strategies are most effective, including:

• Role play
• Coaching
• Repeated practice in different settings
• Corrective feedback and positive reinforcement
• Break-down of complex childcare tasks into steps to be taught individually.

While peer support and self-advocacy offer important benefits in relation to improved sense of connectedness, self-advocacy and confidence, we know that parents with an intellectual disability can struggle to engage with parenting programs and supports that are not tailored specifically to their learning needs. When it comes to learning the skills and behaviours needed to care for babies and young children, parents with an intellectual disability tend not to benefit from parenting supports that are delivered in group formats, that rely on complex language and written materials, and that are delivered in unfamiliar settings such as a clinic.

Instead, there are a range of evidence-based programs available that cater to the particular learning styles of parents with intellectual disability. In Australia, world-leading expertise is available that can help shape professionals’ practices and attitudes about effectively supporting parents with intellectual disability.

Such parenting programs must be fully resourced and integrated into both General and Targeted Foundational Supports to ensure accessibility and reduce risk of stigma and statutory child protection involvement. Where gaps exist, Government must resource evidence-based parenting programs designed specifically for parents with an intellectual disability are widely available to community-based professionals working with people with disability, through regularly available professional training, preferably with embedded coaching to support professionals to implement programs that are fit-for-purpose.

Given the widespread attitudinal change needed across systems including health, child protection, NDIS and legal systems to meet the needs and rights of parents with an intellectual disability, capacity building at a community level is also vital.

As part of the delivery of General Foundational Supports, organisations (such as NAC members) need to be fully resourced for community-wide capacity building. This involves building genuine partnerships across sectors to inform, educate and implement rights-based approaches that meet community need, including through knowledge sharing and replicating evidence-based practices. This will enable practitioners across different sectors—from health to NDIS and child protection—to develop consistent approaches, continuous improvement and stronger intra-sector knowledge in order to successfully deliver or direct parents to the supports they require.

Support during the transition to General Foundational Supports

There is a significant risk of gaps in support during the transition from ILC funding and the implementation of general and targeted Foundational Supports.

For people with an intellectual disability, gaps in provision of information, self-advocacy and peer-support will lead to significant negative outcomes. For First Nations people, this could include gaps in information, resources in language, and the loss of culturally tailored supports. People experiencing crisis, such as parents involved in the child protection system, would be particularly disadvantaged.

It is critical that Government provides transitional support to disability-led organisations and ensures that no parent with an intellectual disability is worse off during the transition to General Foundational Supports. This includes documenting and monitoring these risks, and ensuring that regional, rural and remote communities are not left behind.

References

1 Collings, S., Hindmarsh, G., Spencer M., and Wedgwood, N. (August 2022). Parents with intellectual disability need more support. Retrieved from: https://www.sydney.edu.au/news-opinion/news/2022/08/19/parents-with-intellectual-disability-need-more-support.html Collings, S., Grace & Llewellyn. (2017). Home and the social worlds beyond: Exploring influences in the lives of children of mothers with intellectual disability. Child: Care, Health & Development, 43(5), 697-708. doi:10.1111/cch.12456; Tarleton, B., & Turney, D. (2020). Understanding ‘successful practice/s’ with parents with learning difficulties when there are concerns about child neglect: The contribution of social practice theory. Child Indicators Research, 13, 387-409. https://doi.org/10.1007/s12187-019-09682-y; 2 Article 12—Equal recognition before the law. United Nations Convention on the Rights of Persons with Disabilities. Retrieved from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-12-equal-recognition-before-the-law.html 3 Article 23—Respect for home and family. United Nations Convention on the Rights of Persons with Disabilities. Retrieved from: https://social.desa.un.org/issues/disability/crpd/article-23-respect-for-home-and-the-family 4 United Nations Convention on the Rights of the Child. Retrieved from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-child 5 Man, W., Wade., C., & Llewellyn, G. (2017). Prevalence of parents with intellectual disabilities in Australia. Journal of Intellectual & Developmental Disability, 42(2) 173-179. doi: 10.3109/13668250.2016.1218448. 6 McConnell, D. (2008). Parents labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities 21(4): 296-307 DOI:10.1111/j.1468-3148.2008.00435.x; 7 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 8 Collings, S., Grace & Llewellyn. (2017). Home and the social worlds beyond: Exploring influences in the lives of children of mothers with intellectual disability. Child: Care, Health & Development, 43(5), 697-708. doi:10.1111/cch.12456; 9 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 10 Ibid. 11 Collings, S., Grace & Llewellyn. (2017). Home and the social worlds beyond: Exploring influences in the lives of children of mothers with intellectual disability. Child: Care, Health & Development, 43(5), 697-708. doi:10.1111/cch.12456 12 Li, J., Brown, L., La. H.N., Miranti, R., and Vidyattama, Y. (2019). Inequalities in Standards of Living: Evidence for Improved Income Support for People with Disability. NATSEM, Institute for Governance and Policy Analysis, University of Canberra. Report commissioned by the Australia Federation of Disability Organisations. September 2019. 13 Inclusion Australia. (2023). Disability Employment Services Quality Framework. Retrieved from: https://www.inclusionaustralia.org.au/submission/disability-employment-services-quality-framework/ 14 Australian Institute of Health and Welfare. (2022). People with disability in Australia. Retrieved from https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia

15 Llewellyn, G., & McConnell, D. (2002). Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research, 46(1), 17-34. 16 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 17 Booth, T., Booth, W., & McConnell, D. (2004). Parents with learning difficulties, care proceedings and the family courts: Threshold decisions and the moral matrix. Child and Family Law Quarterly, 16, 409-422. Collings., S. and Spencer., M. (2000). Practices that support parenting by parents with intellectual disability. Australian Institute of Family Studies. Retrieved from: https://aifs.gov.au/resources/short-articles/practices-support-parenting-parents-intellectual-disability#footnote-0010; Llewellyn, G., McConnell, D., & Ferronato, L. (2003). Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse and Neglect, 27(3), 235-251. 18 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 19 Collings, S., Dew, A., Gordon, T., Spencer, M., & Dowse, L. (2017) ‘Intersectional Disadvantage: Exploring Differences Between Aboriginal and Non-Aboriginal Parents with Intellectual Disability in the New South Wales Child Protection System’, Journal of Public Child Welfare, 12(2), pp. 170–189. doi: https://doi.org/10.1080/15548732.2017.1379456 20 Collings, S., Spencer, M., & Mills, R. (2024). A lost opportunity: did the Disability Royal Commission let down parents with intellectual disabilities and their children? Research and Practice in Intellectual and Developmental Disabilities, 11(2), 211–224. https://doi.org/10.1080/23297018.2024.2384047 21 Department of Social Services. 2024. Consultation on Draft Lists of NDIS Supports—Full Report. Retrieved from: https://engage.dss.gov.au/wp-content/uploads/2024/10/ndis-supports-full-consultation-report.pdf page 19-20. 22 Collings, S., Grace & Llewellyn. (2017). Home and the social worlds beyond: Exploring influences in the lives of children of mothers with intellectual disability. Child: Care, Health & Development, 43(5), 697-708. doi:10.1111/cch.12456; Collings, S., Strnadová, I., Loblinzk, J., & Danker, J. (2020). The benefits and limits of peer support for mothers with intellectual disability affected by domestic violence and child protection. Disability & Society, 35 (3), 413-434. doi:10.1080/09687599.2019.164715; Tarleton, B., & Turney, D. (2020). Understanding ‘successful practice/s’ with parents with learning difficulties when there are concerns about child neglect: The contribution of social practice theory. Child Indicators Research, 13, 387-409. https://doi.org/10.1007/s12187-019-09682-y; Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 23 Collings, S., Spencer., M., Wedgwood, N., & Hindmarsh, G. (2022). Supporting the Woman, Supporting the Mother: Final Report. Research Centre for Children and Families, University of Sydney. p. 20. 24 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf

25 Libesman, Terri., Gray, Paul., Chandler, Eloise. Briskman, Linda., Didi, Aminath., and Avery, Scott. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf 26 NDIS Review. 2023. Recommendations and actions. Retrieved from: https://www.ndisreview.gov.au/resources/reports/working-together-deliver-ndis/preface/recommendations-and-actions 27 Bigby, C., Carney, T., Then, S-N., Wiesel, I., Sinclair, C., Douglas, J., & Duffy, J., (2023). Diversity, dignity, equity and best practice: a framework for supported decision-making. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability https://disability.royalcommission.gov.au/policy-and-research/research-program. Page 31. 28 Disability Royal Commission. 2023. Final Report Volume 6: Enabling Autonomy and Access. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-09/Final%20Report%20-%20Volume%206%2C%20Enabling%20autonomy%20and%20access.pdf 29 Wynter, K., K. Hammarberg, G.-M. Sartore, W. Cann, and J. Fisher. 2015. Brief Online Surveys to Monitor and Evaluate Facilitated Peer Support Groups for Caregivers of Children with Special Needs. Evaluation and Program Planning 49: 70–75. doi:10.1016/j.evalprogplan.2014.12.019. 30 Strnadová I, Collings S, Loblinzk J, Danker J. Parents with intellectual disabilities and their perspective of peer support: “It depends on how they give it”. J Appl Res Intellect Disability. 2019 Jul;32(4):879-889. doi: 10.1111/jar.12579. Epub 2019 Feb 20. PMID: 30790398. 31 Collings, S., Strnadová, I., Loblinzk, J., & Danker, J. (2019). Benefits and limits of peer support for mothers with intellectual disability affected by domestic violence and child protection. Disability & Society, 35(3), 413–434. https://doi.org/10.1080/09687599.2019.1647150 32 https://www.grants.gov.au/Ga/Show/e6f54eb7-79c3-4064-80f4-8902e853afaa 33 Collings., S. and Spencer., M. (2020). Practices that support parenting by parents with intellectual disability. Australian Institute of Family Studies. Retrieved from: https://aifs.gov.au/resources/short-articles/practices-support-parenting-parents-intellectual-disability#footnote-0010 34 Feldman, M. A. (1994). Parenting education for parents with intellectual disabilities: A review of outcome studies. Research in Developmental Disabilities, 15(4), 299–302. https://doi.org/10.1016/0891-4222(94)90009-4; Wade, Catherine & Llewellyn, Gwynnyth & Matthews, Jan. (2008). Review of Parent Training Interventions for Parents with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities. 21. 351 - 366. 10.1111/j.1468-3148.2008.00449.x.