Senator the Hon. Linda Reynolds
Minister for the National Disability Insurance Scheme
Via Email: senator.reynolds@aph.gov.au
Via Email: Garry.Simpson@servicesaustralia.gov.au
Via Email: Michelle.Lewis@aph.gov.au
Cc Via Email: martin.hoffman@ndis.gov.au
Cc Via Email: engagement@ndiscommission.gov.au
29 September 2021
Dear Minister Reynolds,
I write to you from Women With Disabilities Australia (WWDA), to provide a brief Submission in response to the National Disability Insurance Scheme (NDIS) Consultation Paper on ‘An ordinary life at Home’ (the Consultation Paper).1
We thank you for the opportunity to provide this response to the NDIS Consultation Paper. This response is informed by the experiences of our membership and networks, including women and girls with disability and their representative networks. WWDA also draws on our plethora of work in the human rights space to inform this response, particularly WWDA’s recent response to the
Disability Royal Commission (DRC) Group Homes Issues Paper.2
As you are aware, WWDA is the only national Disabled People’s Organisation (DPO)3 for women, girls, feminine identifying, and non-binary people with all types of disability in Australia; and uses the term ‘women and girls’ to refer to our members. WWDA is managed and run by women with disability and represents more than two million disabled women and girls in Australia. WWDA has affiliate organisations and networks of women with disability in most States and Territories of Australia and is recognised domestically and internationally for our leadership in advancing the rights and freedoms of women and girls with disability.
Context
WWDA is aware that women and girls with disability reside in, occupy and/or experience, a wide array of different settings, including private and family dwellings, institutional, residential and/or service settings, public housing, and homelessness. An adequate standard of living is not the reality for many people with disability, particularly women and girls with disability. In Australia, 45% of people with disability live in poverty which is more than double the average of other countries in the Organisation for Economic Cooperation and Development (OECD).4
Women with disability “bear a disproportionate burden of poverty” and experience greater social exclusion due to socioeconomic disadvantage, intersectional discrimination, poor service access,
inadequate and unsafe housing, violence, inadequate health care, and a lack of opportunities to actively participate in society.5 Women with disability experience a greater risk of institutionalisation;6 are over-represented in public housing; less likely to own their own homes; pay the highest level of their gross income on housing although they are in the lowest income brackets; are at increased risk of homelessness;7 with older women (including older women with disability) being the fastest growing cohort of homeless Australians.8
WWDA recognises that violence against women with disability can, and does, happen in a variety of settings, relationships, and contexts, including large residential institutions, group homes, respite centres, licensed and un- licensed boarding houses, private homes, at work, in service settings, and on the street. Perpetrators can include intimate partners, family members, formal or informal carers, residents, staff in residential institutions, work ‘colleagues’, transport providers, and disability support workers – to name just a few.
Segregation from community life is a predominant element of many of the living arrangements that people with disability are compelled to live in, including people forced to remain in the family home; younger people with disability languishing in nursing homes; people with disability involuntarily detained in psychiatric facilities; people with disability living in large institutions and smaller institutional settings, such as group homes; people with disability in boarding and rooming houses; and people with disability in various other unsafe and unsuitable accommodation models.9
Many people with disability are not eligible for housing or for any other support under the NDIS, and are reliant on other forms of housing support, such as public housing or private rental. The lack of choice about where to live and with whom is underlined by the lack of accessible mainstream and public housing, and the continued reliance on disability specific models of accommodation or precarious forms of accommodation, such as boarding or rooming houses.
The 2010 Livable Housing Design Guidelines provide aspirational targets for all new homes to incorporate universal housing design standards by 2020.10 However, more than ten years later, only 5% of new housing construction is expected to meet these standards,11 leaving people with disability with little to no housing options in the community, reinforcing and maintaining segregation, social isolation, and an inadequate standard of living.12
What WWDA members have told us about housing
WWDA consulted with our members in the development of this response. Some of the key themes that women with disability told us they want, included:13
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Our voices prioritised
“Please consider and prioritise the voices of people with disability in the feedback you receive to this consultation.”
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The same housing options as everyone else “Why is my support coordinator only recommending SIL? Why is she not also recommending finding share accommodation on flatmatefinders.com.au like people without disability?”
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More information about the housing options available “Most people I know living in a SIL arrangement say they want to stay but that’s because they don’t know any other option. One option is tyranny, two options is a dilemma, three options is real choice”.
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Choice about where and with whom they live
“Most people living in group homes don’t get a choice about who they live with despite clear evidence through service file notes that they don’t like who they live with. They simply don’t know their rights or any other options available to them”.
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Greater connections with their families and other informal supporters
“I’ve found many people who have little or no connection to their families and friends. Many people have families and friends living in other States and Territories. Nothing is done to keep these people connected to their families and their friends”.
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Information from trusted sources
“We want information from our peers, family and friends, support coordinators, workers we trust, advocacy organisations and other organisations that represent us”.
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Accessible technology
“Interactive decision trees are really helpful. If the person and their proxy is able to indicate answers to questions about their preferences and the decision tree eventually takes them to an end page that lists their eligibility and preferred living options. Of course, there should be a button that would allow the user to see all available options. Short video clips that meet all accessibility requirements regarding all available options should be made available. Not promotional videos, information videos”.
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Tighten reporting on abuse in group homes
“Mandate reporting to the Quality and Safeguards on incidents of daily harm- peer to peer interactions that cause harm that do not currently meet the threshold for reporting to get more of an accurate picture about ‘safety’ in group living or incidents between staff and the
person with disability that the person with disability has found disrespectful like talking about the person or the person’s family in front of another. Imagine the day on day impact this treatment has on people with disability who are entirely powerless in this situation.”
- Our diversity acknowledged and respected “Many of us are also from Aboriginal and Torres Strait Islander backgrounds, or Culturally and Linguistically Diverse backgrounds or are from the LGBTIQA+ communities or a combination of these. We have specific issues that need to be heard”.
A Human Rights Approach
Article 12 [Equal recognition before the law] and article 19 [Living independently and being included in the community] of the Convention on the Rights of Persons with Disabilities (CRPD) state that people with disability must “have the opportunity to live independently in the community and to make choices and to control their everyday lives, on an equal basis with others”.14 Being included in the community facilitates the “social networks and naturally occurring community support (including friends, family and schools)” that is critical for supported decision-making.15
In the context of living arrangements, the choice of where to live and who to live with is often not the individual choice of people with disability but more often that of family members, guardians, NDIS nominees, NDIS planners, service providers and policy makers.16
For people with disability to be able to make meaningful choices in their lives, including where to live and with whom to live, and for the free development of the person, Australia needs to meet its obligations under CRPD article 12 and replace substitute decision-making with supported decision making that respects the rights, will and preferences of people with disability.17
The critical interrelationship between CRPD article 19 and article 14 [Liberty and security of person] reinforces the guarantee in article 19 that people with disability are not obliged to live in particular living arrangements. CRPD Article 14 is derived from the foundational right to liberty and security of the person contained in the ICCPR.18 Applied to persons with disability, article 14 stipulates that people with disability enjoy the right to liberty and security of the person on an equal basis with others, and that the existence of impairment shall in no case justify a deprivation of liberty.19
The principles of equality and non-discrimination are fundamental to international human rights law and enshrined in all the core human rights conventions. In the context of disability, article 5 of the CRPD [Equality and non-discrimination] incorporates the prohibition of segregation based on impairment, reflecting the established principle in international law that segregation is inherently unequal and discriminatory.20
The inter-relationship between article 5 and article 19 reinforces that segregated approaches to living arrangements for people with disability, regardless of the ‘quality’ of these arrangements are
inherently discriminatory and therefore a violation of human rights. Institutionalisation of all kinds is discriminatory “as it demonstrates a failure to create housing support and services in the community for persons with disabilities, who are forced to relinquish their participation in community life” in order to receive essential support and/or treatment.21
The ongoing predominance and support for the group home model of accommodation reinforces and maintains the segregation of people with disability from the community. This violates the human rights principles and standards of equality and non-discrimination and prevents realisation of the right to live independently and be included in the community.
Article 28 [Adequate standard of living and social protection] guarantees the right to an adequate standard of living, including the right to adequate housing and support services, while article 19 guarantees the right to liberty of movement and freedom to choose one’s residence by requiring “housing and support services to be structured and provided in ways that enable independence, autonomy, participation and inclusion in the community.”22
Article 28 includes recognition of the right to adequate housing, the continuous improvement of living conditions, and the right to social protection. Article 28 is directed to living independently and being included in the community by stipulating that people with disability have a right to an adequate standard of living to facilitate their full participation and inclusion in community life on an equal basis with others. This includes access to affordable disability-related supports, social assistance with disability-related expenses, equal access to public housing programs, the provision of social protection and poverty alleviation programs, particularly for women and girls with disability and older people with disability.23
A precondition for living independently and being included in the community for people with disability is the accessibility of mainstream places and facilities.24 Article 9 [Accessibility] outlines measures for the removal of accessibility barriers that prevent or limit people with disability from living independently and participating fully in all aspects of life. This includes barriers in relation to the built environment, facilities and services open to the public, transport, housing, cultural and recreational facilities, schools, information, technology, and communications.25
Article 4 [General obligations] includes a requirement for research and development of universally designed goods, services, equipment and facilities and the promotion of universally designed standards and guidelines.26 In relation to article 9, universal design is a principal means to facilitate accessibility, and in the context of article 19, it provides for a barrier-free approach to independent living and inclusion in the community. It also “makes society accessible for all human beings, not only persons with disabilities”.27 This includes through the development of universal design standards for accessibility across a range of areas and the incorporation of universal housing design in building and construction codes to ensure social and residential housing is accessible to all members of the community.28
Analysis of what the NDIS offers
Independent Living Options (ILO) as they are discussed in the Discussion Paper purports to offer an alternative to SIL and SDA for participants. While on the surface this looks positive, ILO relies on the participant to supplement paid supports with unpaid or informal supports for times during the week. WWDA is concerned that many people, particularly women with disability may lack the informal networks necessary to supplement the paid supports. This was offered as an option for one WWDA member recently when her marriage broke down last year as the NDIS planner became concerned the increased funds necessary in her plan to cover informal supports her ex-husband provided wasn’t sustainable. The issue was the woman did not have the adequate informal supports to make this arrangement work as her parents were elderly and her brothers lived in nearby towns with families of their own. The woman didn’t feel comfortable asking her friends to provide this support.
The NDIS aims for NDIS participants to have choice and control over their lives, including in relation to their living arrangements. Under the NDIS, Specialist Disability Accommodation (SDA) provides the funding for eligible participants to choose their housing option and Supported Independent Living (SIL) provides funding for eligible participants to choose essential daily support providers. The intention is to break the nexus between housing and support that leads to people with disability being compelled to live in particular living arrangements in order to receive essential support.
However, the reality does not live up to this promise:
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Most SDA housing consists of group homes transferred to the NDIS from the States, and existing residents of those group homes were automatically deemed eligible for SDA funding so as to remain in their group home.29 Many residents “acknowledged that they had typically not been shown or offered any other options” and were unaware that they could decide on alternative living arrangements.30
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The Specialist Disability Accommodation Provider and Investor Brief 31 “expresses a vision for SDA housing with a clear bias toward shared models of housing” and indicates that the National Disability Insurance Agency (NDIA) will require most people with disability “to live in group-home style accommodation settings, even if it is not their preference”.32
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The Joint Standing Committee on the National Disability Insurance Scheme (Joint Standing Committee) has expressed concern that SIL arrangements “may force participants with SIL to live in shared settings, and may be perpetuating older models of disability support rather than delivering the innovations promised by the NDIS”.33 While there is no policy that directs this approach, assessments of SIL by the NDIA appear to “lead the agency to prefer shared over individual arrangements in many cases”.34
The lack of accessible housing alternatives in the community was a major reason for the introduction of SDA within the NDIS, with a focus on developing “accommodation for people who require specialist housing solutions”.35 SDA aims to provide eligible people with disability choice of housing options given the lack of mainstream housing alternatives. Potentially, the SDA could
address critical housing shortages, particularly for those who are living with ageing parents, younger people in nursing homes, those who remain in hospitals, psychiatric facilities, and other settings because of the lack of alternatives. While the SDA housing market is new, “it is expected to create thousands of new dwellings for people with disability over the next few years”36 increasing choice in where to live and who to live with.37
However, SDA is targeted to people with “very extreme functional impairment or very high support needs”38 so only 6% of NDIS participants are eligible. In addition, and as noted above, most NDIS participants with SDA funding transitioned to the NDIS within an existing supported accommodation arrangement, particularly in group homes. Many of these participants were not offered or not aware of other choices, and it is unclear what measures are being taken to ensure these participants will be able to canvass and make choices about other housing options that are not segregated and congregated living arrangements. Although SDA has enabled development of contemporary, non segregated housing options, of great concern is the fact that the SDA rules and guidelines allow for the building of new group homes, with the group home being one of the most common building types, particularly in NSW.39 It is also commonly known that many former group homes transitioned to the SDA model once the NDIS rolled out across Australia. This means that SDA is facilitating the continuation of segregated and congregate forms of housing for people with disability rather than ending these forms of housing.40
Rather than enable further group home developments through SDA, the NDIA should remove group homes as an SDA new build option and focus on repurposing existing group homes into genuine non-segregated housing options that facilitate community participation and inclusion. The Independent Advisory Council to the NDIS has prepared a range of advice on contemporary options for housing and support, including in relation to repurposing group homes.41 For example, repurposing options for group homes should replicate genuine community living options, and could include group homes becoming ordinary residential housing for people with disability who have partners and families, for families who have family members with disability, or for shared housing for people with disability sharing with people with and without disability.42
A way forward
Additional to the suggestions listed in Appendix D of the discussion paper concerning strategies to support participants with their housing choices, WWDA recommends the following:
- Applying a gendered lens to the NDIS WWDA takes this opportunity to discuss the importance of a gendered perspective to the NDIS. It is widely acknowledged that women experience disability different to men and have less opportunities afforded to them because of their gender. Women and girls with disability also experience violence at higher rates than men with disability and other women and in multiple contents. Women and girls with disability in Australia, particularly women and girls with intellectual and/or cognitive disability,
continue to be denied their basic rights to make fully independent or supported choices about their own lives, bodies, and goals (including housing options).43
The denial of their decision-making rights can range from small choices about what to eat and what to wear, to more important life choices, like where to live, with whom and whether to have a partner and/or children. These are specific issues impacting women and girls with disability and WWDA is concerned that a gender-blind approach to decision-making by the NDIA will compound the situation for many women and girls who continue to lack agency in their own lives.
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Applying a human rights framework to analyse participants’ housing needs Additional to the Home and Living Discussion Themes outlined in the Discussion Paper of: Where I live, who I live with, who supports me and the things I use44 WWDA believes examination of the living arrangements of people with disability within the context of Article 19 of the CRPD will provide a useful human rights framework for the NDIA to determine what an ordinary life at home looks like for people with disability and should include guided by questions such as:
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Are people with disability genuinely able to choose their living arrangements, the people they live with, and the supports that are provided?
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How are people with disability supported to make their own choices about where they live and who they live with?
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Are there laws, policy and practice that oblige people with disability to live in particular living arrangements and to share support workers with others?
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Do housing and support arrangements for people with disability facilitate autonomy, freedom of movement, personal development and community inclusion?
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Do people with disability choose and personally direct their support workers and services?
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What specialised and mainstream measures or programs facilitate personal development, supported decision-making, leadership skills and community engagement?
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What disability and mainstream supports exist to ensure accessibility and inclusion in the community, including in relation to independent living skills, information, communications, accessible public transport, inclusive education, employment?
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Are there research programs focused on universal design, and are universal design standards, including universal housing design standards integrated into construction regulations?
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Why and how do governments continue to support and fund living arrangements that oblige people to live together in particular models, including group homes in order to receive essential support?
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Why is housing that is available to other members of the community not accessible and available to people with disability45?
WWDA acknowledges the work the NDIA is undertaking to ensure an ordinary life at home for NDIS participants. WWDA strongly suggests a gendered lens is applied to the NDIS and that a human
rights-based approach is taken in this work, one that uses Article 19 to analyse why the same housing choices that the rest of Australians enjoy aren’t available to people with disability.
Thank you again for the opportunity to provide feedback on the NDIS Consultation Paper on ‘An ordinary life at Home’.
Our organisation looks forward to continuing to collaborate with you and the NDIA.
Yours sincerely
Carolyn Frohmader
Executive Director
Women With Disabilities Australia (WWDA)
Finalist, 100 Women of Influence Awards 2015
Australian Human Rights Award (Individual) 2013
State Finalist Australian of the Year 2010
Inductee, Tasmanian Women’s Honour Roll 2009
Australian Capital Territory Woman of the Year Award 2001
Endnotes
1 National Disability Insurance Scheme (NDIS) Consultation Paper on ‘An ordinary life at home’ June 2021. 2 For further information, see: https://wwda.org.au/publication/disability-royal-commission-wwdas-response-to-group-homes-issues-paper/ 3 DPOs are organisations made up and governed by people with disability for people with disability 4 PWC, Disability expectations: Investing in a better life, a stronger Australia (November 2011) p.11. Available at: https://www.pwc.com.au/industry/government/assets/disability-in-australia.pdf 5 Disabled People’s Organisations Australia and the National Women’s Alliances, The Status of Women and Girls with Disability in Australia, Position Statement to the Commission on the Status of Women (CSW) Twenty-Fifth Anniversary of the Fourth World Conference on Women and the Beijing Declaration and Platform for Action 1995, Women With Disabilities Australia, 2019, p. 7. http://wwda.org.au/wp-content/uploads/2019/12/The-Status-of-Women-and-Girls-with-Disability-Asutralia.pdf 6 Committee on the Rights of Persons with Disabilities, General comment No. 5 (2017) on living independently and being included in the community, op. cit., para 72. 7 Disabled People’s Organisations Australia and the National Women’s Alliances, op. cit., p. 8. 8 Australian Human Rights Commission, ‘Older Women’s Risk of Homelessness: Background Paper – exploring a growing problem’ (April 2019). Available at: https://humanrights.gov.au/our-work/age-discrimination/projects/risk-homelessness-older-women 9 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 21. 10 Department of Social Services, ‘Livable Housing Design Guidelines’ (website information). Available at: https://www.dss.gov.au/our responsibilities/disability-and-carers/program-services/government-international/national-disability-strategy-initiatives/livable-housing design/livable-housing-design-guidelines 11 Community Affairs References Committee, Delivery of outcomes under the National Disability Strategy 2010-2020 to build inclusive and accessible communities, op. cit., pp. 45-46. 12 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p 24. 13 This feedback is based from conversations, notes and emails shared with WWDA members from August – September, 2021. 14 Committee on the Rights of Persons with Disabilities, General comment No. 1 (2014) Article 12: Equal recognition before the law, op. cit., para 44.
15 Ibid, para 45. 16 See for example, French, P, Accommodating Human Rights: A human rights perspective on housing, and housing and support, for persons with disability, People with Disability Australia, 2009, p. 52. Available at: https://pwd.org.au/resources/library/reports/; Joint Standing Committee on the National Disability Insurance Scheme, Report into Supported Independent Living, (May 2020) Commonwealth of Australia, p. xviii. Available at: https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/Independentliving/Report 17 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p 19, 18 International Covenant on Civil and Political Rights, op. cit., art. 9. 19 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 19. 20 Committee on Economic, Social and Cultural Rights, General comment No. 5: Persons with disabilities, eleventh session 1994, UN Doc E/1995/22, para. 15; Brown v. Board of Education of Topeka, 347 U.S. 483 (1954); Olmstead v L.C. 527 U.S. 581 (1999). 21 Committee on the Rights of Persons with Disabilities, General comment No. 6 (2018) on equality and non-discrimination, 26 April 2018, UN Doc: CRPD/C/GC/6, para 58. Available at: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx 22 French, P, op. cit., p. 26. 23 Convention on the Rights of Persons with Disabilities, op. cit., art 28. 24 Committee on the Rights of Persons with Disabilities, General comment No. 2 (2014) Article 9: Accessibility, 22 May 2014, UN Doc: CRPD/C/GC/2, para 1. Available at: https://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx 25 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 24. 26 Convention on the Rights of Persons with Disabilities, op. cit., art. 4(1)(f). 27 Committee on the Rights of Persons with Disabilities, General comment No. 2 (2014) Article 9: Accessibility, op. cit., para 16. 28 Committee on the Rights of Persons with Disabilities, General comment No. 5 (2017) on living independently and being included in the community, op. cit., para 78. 29 Office of the Public Advocate, “I’m too scared to come out of my room” – Preventing and responding to violence and abuse between co-residents in group homes, Office of the Public Advocate Victoria, November 2019, p. 26. Available at: https://www.publicadvocate.vic.gov.au/resources/submissions/royal-commission-into-violence-abuse-neglect-and-exploitation-in disability-care/647-preventing-and-responding-to-violence-and-abuse-between-co-residents-in-group-homes/file ; see also, Joint Standing Committee on the National Disability Insurance Scheme, Report into Supported Independent Living (May 2020), op. cit., pp. 67-69. 30 Office of the Public Advocate, Ibid. p. 26. 31 National Disability Insurance Agency, Specialist Disability Accommodation Provider and Investor Brief (April 2018). Available at: https://www.ndis.gov.au/providers/housing-and-living-supports-and-services/housing/specialist-disability-accommodation/sda-provider-and-investor-brief 32 ‘Joint statement on the NDIA’s Specialist Disability Accommodation Provider and Investor Brief’, 14 May 2018. Available at: https://dpoa.org.au/wp-content/uploads/2018/05/Joint-Statement-on-the-NDIA’s-SDA-Provider-Investor-Brief.pdf 33 Joint Standing Committee on the National Disability Insurance Scheme, op. cit., p. xviii. 34 Ibid. 35 National Disability Insurance Scheme, ‘Specialist Disability Accommodation’ (website information). Available at: https://www.ndis.gov.au/providers/housing-and-living-supports-and-services/housing/specialist-disability-accommodation 36 Summer Foundation and Social Ventures Australia, Specialist Disability Accommodation Supply in Australia, Summer Foundation (March 2020), p. 2. Available at: https://www.socialventures.com.au/assets/Specialist-Disability-Accommodation-Supply-in-Australia-March-2020-webres.pdf 37 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 21. 38 National Disability Insurance Scheme, ‘Specialist Disability Accommodation’, op. cit. 39 Summer Foundation and Social Ventures Australia, op. cit., p. 7. 40 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 21 41 Independent Advisory Council to the NDIS, Pathways to contemporary options of housing and support (2018). 42 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 22. 43 Frohmader, C. (2013) ‘Dehumanised: The Forced Sterilisation of Women and Girls with Disabilities in Australia’, Women with Disabilities Australia (WWDA), Rosny Park, Australia. 44National Disability Insurance Scheme (NDIS) Consultation Paper on ‘An ordinary life at home’ June 2021, p. 14. 45 Disability Royal Commission: WWDA’s Response to Group Homes Issues Paper, July 2020. p. 25.