Submission to the Joint Standing
Committee on the National Disability
Insurance Scheme about Supported
Independent Living (SIL)
September 2019
About the Submitter
JFA Purple Orange is an independent, social-profit organisation that undertakes systemic
policy analysis and advocacy across a range of issues affecting people living with disability
and their families. Our work is characterised by co-design and co-production, and includes
hosting a number of user-led initiatives. Much of our work involves connecting people living
with disability to good information and to each other. We also work extensively in multi
stakeholder consultation and collaboration, especially around policy and practice that helps
ensure people living with disability are welcomed as valued members of the mainstream
community. Our work is informed by a model called Citizenhood.
JFA Purple Orange
104 Greenhill Road
Unley SA 5061 AUSTRALIA
Telephone: + 61 (8) 8373 8333
Fax: + 61 (8) 8373 8373
Email: admin@purpleorange.org.au
Website: www.purpleorange.org.au
Facebook: www.facebook.com/jfapurpleorange
Contributors
David Elston, Policy and Research Leader
Geoff Barber, Chief Operating Office
Robbi Williams, Chief Executive Officer
Acknowledgments
JFA Purple Orange’s sister organisation inhousing is a registered NDIS SDA provider and
shared with us the stories of people’s experiences with SIL that are included in this
submission.
© September 2019 JFA Purple Orange
2
Contents
- Summary and recommendations …………………………………………………………………………… 4
- Introduction ………………………………………………………………………………………………………… 7
- Principles guiding living arrangements for people living with disability ………………………. 8
- The problem with legacy living arrangements ……………………………………………………….. 10
- The problem with SIL ………………………………………………………………………………………….. 14
- Solutions …………………………………………………………………………………………………………… 19
- Conclusion ………………………………………………………………………………………………………… 23 3
- Summary and recommendations Supported Independent Living (SIL) is most commonly used as a mechanism for funding
service providers to offer shared supports to NDIS participants in a shared living
arrangement, and has enabled people living in group homes to be transitioned from
government block-funded services to NDIS funded services without any change to their
living arrangements.
The 2009 SHUT OUT report1 and 2011 Productivity Commission inquiry report2 highlighted
that the pre-NDIS disability service system was both broken and underfunded. SIL has
ensured that secure funding is in place to deliver supports to NDIS participants in shared
living arrangements. However, providing more funding without fixing a broken system risks
loading the scheme with great costs without delivering transformational benefits to NDIS
participants. As the transition to the NDIS nears completion, there needs to be a renewed
focus on ensuring the scheme delivers value for money in the long term. This means
providing home supports in a way that is flexible to the needs and choices of participants,
ensuring that money is not wasted on unnecessary or unhelpful supports but rather
invested in supports aligned with building participant capacity to achieve their goals.
Congregate settings such as group homes are generally characterised by the features of an
institution rather than the features of a home and do not deliver choice and inclusion for
NDIS participants. The current default SIL funding allocation methodology encourages
support provision to be locked into such shared arrangements. This constrains participants
wanting to take up more flexible and contemporary arrangements and is therefore not
compliant with article 19 of the UN Convention on the Rights of Persons with Disabilities
1 SHUT OUT: The Experience of People with Disabilities and their Families in Australia, page 19, accessed on 30 August 2019 at https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia 2 Productivity Commission 2011, Disability Care and Support, Report no. 54, Canberra, page 111, accessed on 30 August 2019 at https://www.pc.gov.au/inquiries/completed/disability-support/report/disability-support-volume1.pdf 4
(CRPD). During the current formative period in the development of the NDIS market, merely
tinkering with transitional SIL structures risks entrenching existing funding and living
arrangements. It is imperative to now move to offering participants on SIL more flexible
support arrangements.
We therefore recommend the following:
Recommendation 1
The Joint Standing Committee on the NDIS avoid proposing process improvements that
could enhance the attractiveness of SIL to service providers and thereby further entrench a
model that is destined to continue to deliver poor outcomes for people living with disability.
Recommendation 2
Facilitate the national transition of NDIS participants from SIL to more flexible support
arrangements through: allocating individualised funding to those currently receiving SIL based on what
supports are reasonable and necessary for them rather than on historic block
funded arrangements prioritising within the ILC program investment in individual capacity-building, in
relation to building a vision of an ordinary valued life, and how group homes and
comparable services cannot easily deliver this promotion of the Independent Living Options (ILO) support arrangements now
offered in the NDIS Support Catalogue service to all providers and participants,
not only those already delivering or receiving ILO supports further development of ILO and other flexible support funding structures and
pricing which use a participant’s existing funding more innovatively and do not
assume co-location of participants in the same dwelling as the default establishing a mechanism for support providers to demonstrate support models,
outside of SIL, which operate within appropriate individual participant budgets
and consistent with the NDIS’s values
5
establishing dedicated pathways for participants to easily exit existing SIL
arrangements, including an assured way of repurposing existing SIL funding to
finance more flexible support arrangements.
Recommendation 3
Ensure all participants currently in SIL receive adequate support coordination through their
NDIS plan to enable them to freely choose their own living arrangements (including helping
them to exit existing SIL arrangements if they choose) and choose the planning and delivery
of their supports.
Recommendation 4
Require independent supply of support coordination, personal support and housing to
ensure NDIS participants retain choice and control and there is no service provider conflict
of interest, e.g. where a service provider (acting as support coordinator) is responsible for
ensuring consistent delivery of their own services (acting as personal support provider).
Recommendation 5
Address the lack of availability of appropriate affordable housing that can lead to NDIS
participants being placed in more expensive supported living arrangements: Escalate reforms to boost Specialist Disability Accommodation (SDA)
Increase the availability of non-SDA housing to the 94% of NDIS participants
ineligible for SDA
Recommendation 6
Where participants choose to remain in group home or other congregate settings, ensure
that greater control lies with the individual: Allow co-residents to collectively choose a different support provider if they wish
Allow NDIS participants to use a different provider for particular aspects of their
day spent away from daily living Guarantee residents the right to view different group home options and meet
potential co-residents before they decide if they wish to proceed, just as is in the
private rental market Promote small cluster site accommodation over standard group homes. 6
- Introduction The NDIS provides supports to assist participants to live independently in the community.
These supports take a range of forms including: capital supports offering home
modifications and Specialist Disability Accommodation (SDA); capacity building supports to
increase a participant’s skills or capacity for independence, and to ensure a participant
obtains and retains appropriate accommodation; and core supports providing assistance or
supervision with personal tasks of daily life, e.g. personal care and household tasks.3
Supported Independent Living (SIL) forms part of the core supports providing assistance
with daily life, and applies to 7% of NDIS participants but constitutes approximately one
third of NDIS committed support costs.4 The NDIS website defines SIL as “help with and/or
supervision of daily tasks to develop the skills of an individual to live as independently as
possible. These are the supports provided to a participant in their home, regardless of
property ownership, and can be in a shared or individual arrangement.”5 However, the NDIS
Price Guide 2019-20 defines SIL as “the assistance with and/or supervising tasks of daily life
in a shared living environment, with a focus on developing the skills of each individual to live
as autonomously as possible.” This second definition reflects SIL’s most common use as a
mechanism for funding service providers to offer shared supports to NDIS participants in a
shared living arrangement.6 In many cases, SIL appears to have been used as a way to
transition people living in group homes from government block-funded services to NDIS
funded services. The majority of people living in group homes live with an intellectual
3 NDIS Price Guide 2019-20, accessed on 30 August 2019 at https://www.ndis.gov.au/providers/price-guides-and-information 4 Report to the COAG Disability Reform Council for Q4 of Y6 Full report, pages 39, 59 391, accessed on 30 August 2019 at https://www.ndis.gov.au/about-us/publications/quarterly-reports 5 Accessed on 30 August 2019 at https://www.ndis.gov.au/providers/essentials-providers-working-ndia/supported-independent-living 6 See, for example, the National Disability Services Practical Guide to SIL Quoting Version 1, page 1, accessed on 30 August 2019 at https://www.nds.org.au/images/SDP/practical-guides/NDS-Practical-Guide-SIL-Quoting.pdf 7
disability,7 and therefore it is reasonable to assume that most recipients of SIL funding live
with an intellectual disability.
The Joint Standing Committee on the National Disability Insurance Scheme is tasked with
inquiring into the implementation, performance and governance of the NDIS, and has
chosen to inquire into and report on SIL, with particular reference to:
a) the approval process for access to SIL b) the vacancy management process, including its management and costs c) the funding of SIL d) any related issues. JFA Purple Orange is not a disability support provider and therefore brings an independent
perspective to SIL and other support arrangements. In developing our response, we have
drawn on our understanding of the principles that motivated and underpinned the creation
of the NDIS and our strong links to people living with disability and their families. These
equip us with valuable insights into the extent to which SIL is hindering or helping the goals
of the NDIS. In addition, we have consulted with a SIL provider and a Specialist Disability
Accommodation (SDA) provider that we have close relationships with in order to identify
specific examples illustrating our analysis.
- Principles guiding living arrangements for people living with disability
Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) lays out
the rights of people living with disability to live independently. In ratifying the CRPD in 2008,
Australia committed to ensuring that “Persons with disabilities have the opportunity to
choose their place of residence and where and with whom they live on an equal basis with
7 Bigby, C. & Bould, E. (2017) Guide to Good Group Homes, Evidence about what makes the most difference to the quality of group homes, page 2. Centre for Applied Disability Research. Available at www.cadr.org.au 8
others and are not obliged to live in a particular living arrangement” and ensuring that
“Persons with disabilities have access to a range of in-home, residential and other
community support services, including personal assistance necessary to support living and
inclusion in the community, and to prevent isolation or segregation from the community.”8
The general principles guiding action under the National Disability Insurance Scheme Act
2013 echo Article 19 in stating that “Reasonable and necessary supports for people with
disability should support people with disability to live independently and to be included in
the community as fully participating citizens” and that “People with disability should be
supported to exercise choice…in the planning and delivery of their supports”.9
In addition to the legal framework underpinning the right to live independently, it is
important to recognise the basic human need to live in a residence that feels like a home,
and the role of a home in supporting wellbeing and building community connections. Josey
McMahon, a board member at the Community Resource Unit (CRU), eloquently describes
what it means to have a home:
“Home for me is sanctuary - a place where I feel safe and secure. It is also a
place where I can be myself, relax and unwind. It is a space that I can have
control over and have the things that provide me comfort. It is a space that I can
call my own, have my family, friends and acquaintances visit whether that be for
a cuppa, a meal, a party or some entertainment. It is often the place that people
get to know me the best as they can observe and witness for themselves the
things that matter to me. My home tells a story about me and is much more than
bricks and mortar… My home has become a launchpad into my local community
where I have become connected and known by neighbours. I am a regular visitor to
8 UN Convention on the Rights of Persons with Disabilities (CRPD), pages 13-14, accessed on 30 August 2019 at https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html 9 National Disability Insurance Scheme Act 2013, pages 6-7, accessed on 30 August 2019 at https://www.legislation.gov.au/Details/C2013A00020 9
local cafes, newsagent, chemist, post office, gifts shops etc. I am known by my name
and I am not just another person being served.”10
Arguably the sanctity of home is even more important for people living with disability than
for non-disabled people given: there are many situations outside of the home where people
living with disability currently feel excluded or disempowered; and they may spend a large
proportion of their week at home due to barriers to economic and social participation.
Policies and practices, including SIL, that influence living arrangements for people living with
disability should be evaluated based on the extent to which they: comply with the legal framework relating to disability comply with the objectives of the NDIS
support people living with disability to:
o freely choose their own living arrangements
o choose the planning and delivery of their supports
o have control over and personalise the space they live in
o be included in their local community.
- The problem with legacy living arrangements Historically, many Australians living with disability were forced to live in institutions.
Nowadays, most (but not all) larger residential institutions have closed. However, many
people living with disability (particularly intellectual disability) continue to live in congregate
housing arrangements such as group homes, cluster housing, supported residential facilities
and aged care facilities. These residences are shared by unrelated people with similar
support needs and supervised by support staff. The Australian Government reports that in
10 Crucial Times August 2019 Issue 55, page 3, accessed on 30 August 2019 at https://cru.org.au/crucial-times-55-what-it-means-to-create-a-home/ 10
2015-16 5.2 per cent (14,812) of disability service users were living in domestic-scale
supported living facilities such as group homes and a further 2.8 per cent (8,046) were living
in supported accommodation facilities.11
The 2009 SHUT OUT report on the experience of Australians living with disability and their
families details why many people living with disability remain in these accommodation
settings – it is often the only way people can access social and personal care supports, since
such supports have typically been offered only to those residing in particular congregate
settings:
“It is reasonable to argue that very few people living in group homes would choose
to live in such a setting if they had a realistic choice. It is a compromise brought
about by necessity, as they do not have enough support through funding for paid
support, even augmented by their family and informal support networks, to live in
their own home…”12
While group homes do not tend to carry all of the problems of large residential institutions,
they typically still retain several institutional characteristics: 13 Limited or no choice of whom to live with – including size of household; to what
extent get on with the other people in the household; and option to live alone or
with a partner, other relatives or friends who may or may not live with disability Limited choice of service provider and obligatory sharing of assistance with others in
the household
11 Australia’s Combined Second and Third Periodic Report under the Convention on the Rights of Persons with Disabilities, 2018, page 38, accessed on 30 August 2019 at https://www.ag.gov.au/Consultations/Documents/Convention-on-the-rights-of-persons-with-disabilities/Australias-draft-combined-second-and-third-periodic-report.pdf 12 SHUT OUT: The Experience of People with Disabilities and their Families in Australia, page 27, accessed on 30 August 2019 at https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia 13 Committee on the Rights of Persons with Disabilities General Comment No. 5 (2017) on living independently and being included in the community, pages 4-5, accessed on 30 August 2019 at https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx 11
Once arrangements are in place, difficult to change accommodation, housemates or
service providers, even if they become unsatisfactory to a resident
Feel more like facilities delivering services than like homes – managed and run by
service providers, with residents having limited control over what happens there and
limited opportunity to make the space their own or to host visitors Have fairly rigid routines and require residents to do activities as a group
Expose residents to increased likelihood of being subjected to regulated restrictive
practices, especially environmental restraints that limit their access to or control
over shared amenities such as fridges, particular rooms of the house, mealtimes,
activities, etc.14 15 Segregate rather than acting as a gateway to community inclusion because
neighbours view them as service venues rather than regular homes Expose residents to vulnerability from abuse or exploitation from staff and other
residents through segregation.
In 2017, the UN Committee on the Rights of Persons with Disabilities adopted General
Comment No. 5 (2017) on living independently and being included in the community, which
aimed to assist States parties in their implementation of article 19 and fulfilling their
obligations under the CRPD. General Comment No. 5 makes explicit that the following are
all incompatible with article 19: Mandatory “package solutions” which, among other things, link the availability of
one particular service to another, expect two or more persons to live together or
can only be provided within special living arrangements
The concept of personal assistance wherein the person with disabilities does not
have full self-determination and self-control
14 Australian Law Reform Commission Equality, Capacity and Disability in Commonwealth Laws (DP 81), Chapter 8, accessed on 30 August 2019 at https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws-dp-81/8-restrictive-practices/restrictive-practices-in-australia/ 15 National Disability Insurance Scheme (Restrictive Practices and Behaviour Support) Rules 2018, accessed on 30 August 2019 at https://www.legislation.gov.au/Details/F2018L00632 12
Housing only provided in specifically designed areas and arranged in a way that
persons with disabilities have to live in the same building, complex or
neighbourhood Reasoning that there are some people living with disability with more complex
needs for whom it is too costly to provide services outside of an institutional setting
or whom are considered unable to live outside of an institutional setting.16
In its 2013 concluding observations on the initial report of Australia, the Committee:
“encourages the State party to develop and implement a national framework for the
closure of residential institutions and to allocate the resources necessary for support
services that would enable persons with disabilities to live in their communities. The
Committee recommends that the State party take immediate action to ensure that
persons with disabilities have a free choice as to where and with whom they want to
live, and that they are eligible to receive the necessary support regardless of their
place of residence.” 17
It is clear that congregate settings such as group homes are not compliant with article 19 of
the CRPD, fail to deliver choice and inclusion as described in the National Disability
Insurance Scheme Act 2013 and are generally characterised by the features of an institution
(as laid out in General Comment No. 5) rather than the features of a home.
16 Committee on the Rights of Persons with Disabilities General Comment No. 5 (2017) on living independently and being included in the community, pages 5-6, accessed on 30 August 2019 at https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx 17 UN Committee on the Rights of Persons with Disabilities (CRPD), Concluding observations on the initial report of Australia, adopted by the Committee at its 10th session, 2-13 September 2013, CRPD/C/AUS/CO/1, page 6, accessed on 30 August 2019 at https://www.refworld.org/docid/5280b5cb4.html 13
- The problem with SIL The introduction of the NDIS is a unique opportunity to transform service delivery for
Australians living with disability. Previous block-funding arrangements that tied support to
residence in a group home are coming to an end, and new individualised funding models are
being developed under the NDIS with an ostensive aim of giving participants choice and
control. It would therefore be hoped that people currently living in group homes who are
transferring onto the NDIS would receive funding that allows them to receive the home
supports they need from the provider of their choice in the home of their choice. Such an
arrangement could deliver transformational benefits for NDIS participants living in group
homes by helping them to become actively involved as a valued member of their local
community.
Instead, SIL funding arrangements appear to have been developed to manage the transition
of residents of congregate housing onto the NDIS with minimal disruption to existing
housing and support arrangements. Thus participants continue to live together in a group
home setting where they receive shared supports from a service provider. While the SIL
quoting tool requires service providers to consider the needs of each individual receiving
support, the tool is completed per property rather than per individual, with the service
provider balancing the needs of each individual and staffing and rostering considerations
when developing a quote. The SIL quoting process is primarily a discussion and agreement
between a service provider and the NDIA, with limited input and oversight from the NDIS
participant and their family: the NDIS participant is not necessarily given the opportunity to
view the quote or the roster or to confirm it meets their needs.18 This is in stark contrast to
other components of the NDIS, where participants are funded through their individual plans
to choose and pay for quality services directly.
18 NDIS Guide to using the Provider Supported Independent Living (SIL) Pack, September 2018, accessed on 30 August 2019 at https://www.ndis.gov.au/providers/essentials-providers-working-ndia/supported-independent-living 14
SIL is not genuine individualised funding. For example, if one participant in a home requires
active overnight support in a home then it is likely that all participants in the home will have
active overnight support in their plan, regardless of their individual needs. If a group home
resident is unhappy with their SIL provider, they are likely to require agreement from a
majority of residents in order to change providers, and under some transitional
arrangements residents are tied to their current provider for a fixed period of time (e.g.
residents in New South Wales transferring from state government accommodation services
to SIL providers cannot change their SIL provider for the first two years19).
It may be that SIL’s primary intended role was as a short-term transitional measure to
enable residents of congregate housing to access the NDIS while individualised funding for
supports for daily tasks is being developed for them. However, during the current formative
period in the development of the NDIS market, there are major risks of entrenching the SIL
funding model and group home status quo, both through service providers setting up their
businesses to deliver SIL supports to group home residents and through the NDIA making
cost assumptions about the NDIS based on people living in group home arrangements. SIL is
attractive to service providers because there are tools and templates that make it relatively
efficient and unbureaucratic to manage compared with other NDIS supports and because it
accounts for a substantial proportion of NDIS spending.
While SIL allows for support to be provided to people living in individual as well as shared
arrangements, in practice there are multiple drivers encouraging service provision in shared
arrangements such as group homes:
Firstly, service providers who were already providing disability supports to people in
group homes are familiar with this model, and often have existing systems to deliver
19 NSW Government Information Sheet: Transfer of disability services – accommodation and service agreements, accessed on 30 August 2019 at https://ndis.nsw.gov.au/about-ndis-nsw/transfer-of-nsw-disability-services/information-sheet-transfer-of-disability-services-accommodation-and-service-agreements/ 15
services, and therefore are likely to continue operating it in the absence of an
imperative to change Secondly, there is a shortage of affordable housing for people living with disability
(particularly in the case of people who require housing with physical accessibility
features), and shared living arrangements may be appealing where they reduce the
perceived volume of housing stock demanded, even if they incur greater long-term
costs Thirdly, in some cases it is financially attractive to service providers to provide
supports in shared rather than individual arrangements, since they can provide
supervision to multiple participants at the same time Fourthly, the NDIS SIL quoting guidelines state that the purpose of a quote is to
identify “supports that are shared between participants to maximise the efficient
use of resources”20 and in most cases the quoting tool assumes staffing ratios not
based on one-to-one support, hence setting expectations for service providers.
In investing in a broken model of disability support, SIL is proving costly without delivering
transformational benefits for participants. Indeed, the NDIA has identified already higher
than expected SIL costs as a source of financial pressure on the NDIS.21
The NDIS SIL model seems to assume that many people living with disability who require
ongoing supervision or assistance with daily tasks should receive their supports on a long
term basis in a group home setting, and that if participants can share supports then they
should share them (regardless of what they want or what their goals are). However, non
disabled people have a wide range of living arrangement options, including living alone,
living with a partner and/or children, living with other relatives and living with friends. Most
do not choose to live with a group of people they do not know well, and very few choose
20 SIL Quoting Template example, page 1, accessed on 30 August 2019 at https://www.ndis.gov.au/providers/essentials-providers-working-ndia/supported-independent-living 21 Report to the COAG Disability Reform Council for Q4 of Y6 Full report, page 59, accessed on 30 August 2019 at https://www.ndis.gov.au/about-us/publications/quarterly-reports 16
this option for the long-term. It is reasonable to expect that people currently based in group
homes would choose a similarly wide range of different living arrangements if supported to
do so. SIL therefore fails to cater to those living with disability who would prefer not to live
in a group home, and the use of the word ‘independent’ within the SIL acronym is a
misnomer.22
NDIS participants who have lived in a group home from many years are likely to be used to
this living arrangement and may have become institutionalised or be unaware of alternative
options. A majority of group home residents live with an intellectual disability, meaning they
may have limited personal capital with which to demand change, and their families may
worry that they will not receive adequate support in another setting. For these reasons, it is
important that the NDIS is designed to provide participants with options and help them
work out their preferred living arrangements rather than assuming the absence of any
major complaint means a default arrangement can be maintained. Unfortunately, SIL has
instead been set up in a way that risks trapping NDIS participants in existing group home
arrangements.
Currently, there is no transparency or clarity about the process by which an NDIS participant
exits SIL, and it does not appear to be a quick or easy process. Where a participant wishes to
leave a group home for an alternative living arrangement, under the current SIL model the
NDIS is likely to calculate the cost of this alternative arrangement based on the existing
shared supports the participant is utilising. It is then probable that they will deem the
proposed arrangement as not reasonable and necessary and therefore will refuse to fund it.
This is unfair given equivalent arrangements are being provided to people who left group
homes before they joined the NDIS, and it is at odds with the capacity-building principles of
the NDIS. Moreover, participants are not necessarily asking for, and do not necessarily
22 Committee on the Rights of Persons with Disabilities General Comment No. 5 (2017) on living independently and being included in the community, page 5, accessed on 30 August 2019 at https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx 17
require, any additional funding. Rather, they need the flexibility to use their existing funding
more innovatively, for example by complementing it with informal supports and capital and
capacity building supports.
Our sister organisation inhousing is a registered NDIS SDA provider and has shared with us
stories of people living with disability whom they have sought to assist with access to
appropriate housing, but where SIL is acting as a barrier to them living in the housing
arrangement of their choice. Names have been changed to protect identities:
Peter is a man in his 50s with an acquired brain injury who is currently living with his
ageing parents. In keeping with living an ordinary adult life, Peter and his parents
have been seeking a long-term stable home for Peter to live in separately from his
parents. Peter’s mother had supported Peter to find a suitably accessible home in
proximity to his parents’ home so they could continue to provide informal supports,
in line with roles typically provided by parents to their adult children. This house
would give Peter an opportunity to share with a housemate, and have a room
available for passive support. At the current time the NDIA has indicated that Peter is
unlikely to receive adequate funding to meet his personal support needs in this
house of his choice as the current tenant does not require overnight supports, and
therefore the NDIA deems this housing option not to represent value for money. The
NDIA did not seek to explore how more flexible and informal supports might be able
to meet Peter’s personal support needs.
Andrew is a man in his 50s with an acquired brain injury who is living in an SDA
property. The house is adjacent to a second SDA property and SIL funding is shared
between the four people living in these two houses. Andrew, with support from his
family, expressed a desire to live more independently and in closer proximity to his
adult children. Due to the distance and difficulties with travel, Andrew’s contact with
his children is very limited. If Andrew were to live near his family, he would have
much greater opportunity to maintain relationships with his children and benefit
from greater informal support. When an opportunity arose for Andrew to move to
18
an SDA property near his family, it was reported that the NDIA would not increase
funding sufficiently to enable Andrew to live in the housing option of his choice.
There was no exploration of flexible supports or clarity about the funding gap
required for him to take up alternative support arrangements.
John is a man in his 60s with an acquired brain injury who lives in a cluster site in the
city. Prior to his brain injury John lived outside the city, and he is keen to return to
living near family and friends. inhousing have a new-build SDA property where John
wants to live that would meet his accessibility needs. However, John is currently
receiving SIL funding to share with six people in the cluster site. There is significant
uncertainty for John and his SDA provider about whether John can release his
support funding. This means he is currently unable to assess (with assistance from an
independent support coordinator) if his current funding is adequate to enable him to
live in his choice of home and if and how he might use flexible supports, technology
or a mix of freely given support to achieve his goals.
- Solutions In reporting on its inquiry into SIL, we would caution the Joint Standing Committee on the
NDIS not to recommend process improvements that could enhance the attractiveness of SIL
to service providers and thereby further entrench a model that is destined to continue to
deliver poor outcomes for people living with disability (Recommendation 1). NDIS
participants deserve transformational benefits from the scheme, not simply a continuation
of the well-documented unsatisfactory arrangements they had prior to joining. We propose
that the committee develops a roadmap for the national transition of NDIS participants
from SIL to more flexible support arrangements that deliver on the promise of individual
choice and control, sometimes referred to as individual supported living arrangements.
The Individual Supported Living research project (led by Curtin University) developed a
framework to describe and measure the quality of individual supported living arrangements
for people living with intellectual or developmental disability and then evaluated 130 such
19
existing arrangements across Western Australia, New South Wales, and Victoria. 23 The
study categorised the arrangements into four types: Living alone (in own home)
Co-residency (live in own home with tenants who provide support in exchange for
free or reduced rent) Relationships (live with friends or an intimate partner)
Host family (live in the family home of people to whom they are not related).
In order to transfer people already living in these arrangements onto the NDIS, an Individual
Living Options (ILO) template has been developed and piloted in Western Australia. As of
July 2019, ILO quotes can be submitted by service providers to the NDIA based on three new
line items in the NDIS Support Catalogue 2019-20 that mirror the four Individual Supported
Living research categories (labelled as ‘Co-residency’, ‘Host arrangement’ and ‘Rostered
supports’).24 However, the focus to date has been on transitioning people already with ILO
arrangements onto the NDIS rather than facilitating the transition of people with SIL
arrangements onto ILO arrangements, which is reflected in the support item descriptions
referring to “supports to maintain their existing Individual Living Option transitional
arrangement”. In addition, at present there is no mechanism for service providers to
demonstrate other innovative support models not covered by ILO.
When considering ILO arrangements as alternatives to SIL, it is important to consider their
impact on service costs and thus on the financial sustainability of the NDIS. The first thing to
recognise here is that individual arrangements are often no more expensive than shared
arrangements and in some circumstances can be more cost-effective:25 there is evidence
23 Cocks, E. and Thoresen, S. and McVilly, K. and O’Brien, P. 2017. Quality and Outcomes of Individual Supported Living (ISL) Arrangements for Adults with Intellectual and Developmental Disabilities - Final Report, Curtin University of Technology, School of Occupational Therapy and Social Work. 24 NDIS Support Catalogue 2019-20 PDF, page 8, accessed on 30 August 2019 at https://www.ndis.gov.au/providers/price-guides-and-information 25 Felce, D., Perry, J., Romeo, R., Robertson, J., Meek, A., Emerson, E., & Knapp, M. (2008). Outcomes and costs of community living: Semi-independent living and fully staffed group homes. American Journal on Mental Retardation, 113, 87–101, accessed on 30 August 2019 at https://www.ncbi.nlm.nih.gov/pubmed/18240878. 20
that a sizeable proportion of people living in group homes live with mild intellectual
disability and do not require 24-hour support so could live more independently with the
right support arrangements.26 Even where fewer formal support hours can be provided out
of an NDIS package in an individual arrangement than in a shared arrangement, a
participant may prefer to spend their support funds as they choose and then top up the
hours by drawing on informal supports. Finally, the UN Committee on the Rights of Persons
with Disabilities has made it clear that the cost of delivering personal services does not
provide an exemption to a person’s right under article 19 of the CRPD to live where and with
whom they want to. Having ratified the CRPD, the Australian Government is obliged to fund
supports to enable people living with disability to live independently in the community.
We make the following the recommendations to solve the problems with legacy housing
arrangements and SIL: Recommendation 2 – Facilitate the national transition of NDIS participants from SIL
to more flexible support arrangements through:
o allocating individualised funding to those currently receiving SIL based on
what supports are reasonable and necessary for them rather than on historic
block-funded arrangements
o prioritising within the ILC program investment in individual capacity-building,
in relation to building a vision of an ordinary valued life, and how group
homes and comparable services cannot easily deliver this
o promotion of the Independent Living Options (ILO) support arrangements
now offered in the NDIS Support Catalogue service to all providers and
participants, not only those already delivering or receiving ILO supports
Fyffe, C., McCubbery, G., 26 Christine Bigby, Emma Bould & Julie Beadle-Brown (2018) Comparing costs and outcomes of supported living with group homes in Australia, Journal of Intellectual & Developmental Disability, 43:3, 295-307, page 295, accessed on 30 August 2019 at https://www.tandfonline.com/doi/full/10.3109/13668250.2017.1299117 21
o further development of ILO and other flexible support funding structures and
pricing which use a participant’s existing funding more innovatively and do
not assume co-location of participants in the same dwelling as the default
o establishing a mechanism for support providers to demonstrate support
models, outside of SIL, which operate within appropriate individual
participant budgets and consistent with the NDIS’s values
o establishing dedicated pathways for participants to easily exit existing SIL
arrangements, including an assured way of repurposing existing SIL funding
to finance more flexible support arrangements. Recommendation 3 – Ensure all participants currently in SIL receive adequate
support coordination through their NDIS plan to enable them to freely choose their
own living arrangements (including helping them to exit existing SIL arrangements if
they choose) and choose the planning and delivery of their supports. Recommendation 4 – Require independent supply of support coordination, personal
support and housing to ensure NDIS participants retain choice and control and there
is no service provider conflict of interest, e.g. where a service provider (acting as
support coordinator) is responsible for ensuring consistent delivery of their own
services (acting as personal support provider).
Recommendation 5 – Address the lack of availability of appropriate affordable
housing that can lead to NDIS participants being placed in more expensive supported
living arrangements:
o Escalate reforms to boost Specialist Disability Accommodation (SDA)
o Increase the availability of non-SDA housing to the 94% of NDIS participants
ineligible for SDA Recommendation 6 – Where participants choose to remain in group home or other
congregate settings, ensure that greater control lies with the individual:
o Allow co-residents to collectively choose a different support provider if they
wish
o Allow NDIS participants to use a different provider for particular aspects of
their day spent away from daily living
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o Guarantee residents the right to view different group home options and meet
potential co-residents before they decide if they wish to proceed, just as is in
the private rental market
o Promote small cluster site accommodation over standard group homes.
- Conclusion JFA Purple Orange is grateful for the opportunity to provide our views on how we believe SIL
is hindering the goals of the NDIS and risks trapping people in broken group home
arrangements rather than giving them choice and control over where they live and the
supports they receive. Fortunately, better and often more cost-effective living arrangements
are already well-established, for example in the form of ILO. However, a delay in moving to
more flexible support arrangements risks entrenching the SIL funding model and group
home status quo. We therefore call on the committee to push for a timely transition of NDIS
participants from SIL to more flexible support arrangements, with the necessary assistance
for participants and service providers to facilitate this transition.
We request the opportunity to meet with the Committee to discuss these points further.
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