Submission on the NDIS framework for
information, linkages and capacity building (ILC)
Introduction
NDS appreciates the opportunity to comment on the proposed policy parameters for ILC
services that will be available to all people with disability and their families, including
participants of the National Disability Insurance Scheme (NDIS).
NDS fully endorses the ambitions of the ILC framework. We are very pleased that it
addresses many issues we raised in our policy paper “The case for block funding under
the NDIS” which we sent to the National Disability Insurance Agency (NDIA) in 2014.
However, we are disappointed about the lack of detail on how the ILC framework might
be implemented or about how existing services will be managed in the transition process.
While state and territory governments agreed to fund ILC services throughout the NDIS
trial period, these bilateral agreements with the commonwealth do not extend past July
2016. The resulting uncertainty about ongoing funding for current ILC services impedes
strategic planning and there is a real risk that some good services, infrastructure and
networks will be inadvertently lost while the transition process is being sorted out.
Many disability providers have expressed an interest in ILC services as a priority because
they have seen how they prevent avoidable crisis and help individuals and families gain
resilience. This is why not-for-profit providers have often cross-subsidised ILC services to
help achieve their missions. Governments must recognise and sustain the wealth of
existing community based ILC expertise and networks that has developed over the years.
What are the most important elements of ILC?
It is most important that ILC services are engaged with, responsive to, and inclusive of
their target communities. While there are very diverse target communities resulting in
diverse service models (see Appendix A), our analysis has identified the following
common community focused features as critical to effective ILC services:
•
They build knowledge, skills, understanding and confidence about specific and
general disability issues, within families, wider communities and across ‘mainstream’
services. Through this they advance social capital and resilience in communities.
•
They empower people with disability and build their networks. They help people
to connect to local services and support networks including advocacy support, and
they help people develop skills and knowledge to promote independence.
•
They are accessible and inclusive. They must be easy to access in terms of
language, format and geography. A ‘no wrong door’ approach is seen as key to
ensuring information, advice and referral is available for all who seek it.
•
They are flexible and responsive to local needs and cultures. They should be
bespoke to meet specific needs and circumstances. They should not only provide a
resource but also be a driver of innovation as needs and circumstances evolve.
National Disability Services: Submission on the NDIS framework for ILC services
What is missing?
The most serious omission in the framework is a picture of existing ILC services. All
Australian governments fund and provide a range of services consistent with every
aspect of the framework, although not comprehensively or consistently. It is important to
have a good sense of these current services as the starting point for implementing the
framework.
Clarity is also missing on future funding and contracting for ILC services. While the
framework paper indicates a mix of contract for support, bulk purchasing, grants, seed
funds and direct provision will be used for ILC, significant unanswered questions remain.
Such as what method will be used for what services, and how to assure quality, value for
money and contestability when bulk purchasing is used.
The following matters are also inadequately canvassed in the framework:
• The role of research, evaluation and data and its contribution to information and
advice products as well as NDIS actuarial analysis.
• The role of volunteer coordination services and the ongoing production of social
capital in the ILC sector. Some current services recruit and match volunteers with
clients to provide support such as: weekends away for children with host families;
buddies to support engagement in a sports club; expert help with assistive technology;
and intermittent ‘back-up’ if a crisis arises. These services advance ongoing natural
support and provide support for people who are not eligible for individualised support.
They present good value for money but require secure funding (see examples in items
i and j in Appendix A).
• The challenge of providing effective ILC services in rural and remote regions where
inter-sectorial collaboration and contracting will be the most cost-effective approach.
• The details for access to individualised support for non-participants with episodic or
low level needs.
• The role of advocacy services as a complement to ILC services. There is general
agreement about the importance of individual and systemic advocacy services and
that these should be funded outside the NDIA to maintain independence. However,
there is an overlap between some ILC functions and some current advocacy services.
To prevent confusion it would be useful to clarify the various advocacy functions and
related funding responsibilities.
How will we know the ILC streams are meeting their objectives/vision?
In short, the objectives of the ILC streams will be fully achieved when we have an
inclusive Australian society that enables people with disability to fulfil their potential as
equal citizens (the vision of the National Disability Strategy).
The assumption with ILC is that more effective system navigation, broad disability
awareness and community development will help reduce reliance on ongoing funded
support from a range of service areas, and benefit the whole community. To test and
monitor this assumption investment in ILC should be informed by both a population based
evaluation of the impact of ILC, and potential savings to the scheme, as well as evidence
about the direct impact of different service models.
Rec 1) Invest in research, data collection and related dissemination about ILC.
Innovation and related evaluation should inform both future contracting decisions as well
as actuarial decisions about how much and what ILC services to invest in. This should
occur as part of a wider cross-government disability research agenda to improve the
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National Disability Services: Submission on the NDIS framework for ILC services
evidence base for implementation of the NDIS and the National Disability Strategy.
Current investment is totally inadequate to the task.
What would be the implementation challenges?
The first challenge with the framework is to map and transfer, or transform, funding for the
wide spectrum of current ILC services without losing investment or creating gaps.
Secondly it is important to ensure equitable coverage across Australia and decide where
it is necessary to extend, reduce or re-align services. The third challenge is to develop
guidelines for future funding of ILC services in a way that fairly maintains local networks
and responsiveness, and also assures quality and contestability where appropriate.
To emphasise the need to sustain the diversity and value of existing ILC services NDS
has provided a set of case studies (see Appendix A). These wide ranging services have
evolved in response to very specific needs such as a particular diagnosis, demographic
or culture, and have developed unique infrastructures often involving peer support. Some
ILC services are specialist associations that operate a nation-wide network and others
are only available to one geographical community. Some are connected to service
providers, some are provided by governments, including local government, and some are
independent. No one funding model or service prescription will be appropriate.
Indeed it would be destructive for the NDIA to overly prescribe service models, hope
services respond through a competitive tender process and then closely manage
performance. This approach would likely erode effective connections, reduce local
responsiveness and lose investment. A far better approach is to complement and
strengthen the current links and networks of the sector with a gradual approach to
change and any new funding structures.
Rec 2) Commit to continuity of ILC support throughout implementation of the NDIS.
Governments should treat current ILC services as a starting point for developing a
comprehensive and national ILC network. This involves rolling over existing contracts,
mapping what exists now, and what works well, and doing a gap analysis to identify areas
for growth. The NDIA should also communicate to providers in a timely way about what
future funding structures will be so they can plan well.
Current ILC services also tend to reach out into the community and see first-hand the
issues that people with disability face. These existing services have a lot to offer in the
design and implementation of ILC services under the NDIS.
Rec 3) Actively engage existing ILC providers in co-design to develop a more
detailed plan for any transfer of resources and the full implementation of the ILC.
Which aspects of a person’s life do you think ILC could have the
greatest impact on?
Just as the ILC services are diverse, so too is the impact on individual lives. The
overarching impact should be a reduction in community barriers, increased independence
and equal opportunities for people with disability to lead the lives they want.
What are some of the principles that should guide investment across
ILC streams?
Respect for local responsiveness is critical to investment across ILC streams. Every
community has different cultural, demographic and environmental opportunities or
challenges to address. Every state and territory also has different approaches to
mainstream provision, and the interface will be different in each area. It is imperative that
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National Disability Services: Submission on the NDIS framework for ILC services
ILC services can be locally responsive to these differences. The following principles are
designed to ensure locally responsive and community focused ILC services:
• Value local networks and social capital production: Decisions on funding and
contracting methods need to consider the benefit of maintaining networks, such as
collaboration across service systems and volunteer participation. These relationships
and related infrastructures are critical not only for sustainability of the NDIA but often
are also critical for the support provided. They help create communities of interest
including peer support and are inherently locally responsive. This means that for some
services a highly competitive tender process will not be appropriate and a grant
scheme that can take account of local networks will work better.
•
Promote collaboration on infrastructure and ‘back of house’ services: The NDIA
could help ensure that some small but effective local services are maintained through
facilitating collaboration. For example, a group of diagnosis specific associations could
usefully share a venue owned by the local authority for running community events and
providing information. There might also be shared website and systems support.
•
Build knowledge about the quality of various service options: There is a need for
quality control and some contestability. To help achieve this we believe it is important
to provide quality assurance guidance for ILC providers. For example, organisations
would greatly benefit from templates or other guidance on how to collect data about
the impact of their services. These systematic impact evaluations could help the NDIA
to understand the value of services and ensure more informed funding decisions in
future.
•
Bulk purchase where it is impractical to rely on individualised funding: Bulk
purchasing through grants, seed funding or competitive tender processes will be
appropriate for most ILC services as they are available to the whole population not just
NDIS participants. It will also be appropriate for some individual support that offers
value for money through producing social capital or making use of local collaborations
but which cannot easily operate on fee for service basis, such as volunteer
coordination schemes.
•
Establish independent governance of allocation decisions: Where grants are
being allocated decisions should be informed by an independent multi-stakeholder
panel. There should also be transparent criteria which guide these decisions and
which take account of impact evaluations, networks and social capital contributions.
•
Promote and share good practice: Planning for comprehensive coverage should
emphasise equity of impact and good practice not consistency of service model.
Therefore the focus of service development should draw from evidence of impacts,
gap analysis and co-design.
•
Provide continuity and longer-term contracts: Small organisations, with volunteer
components to their infrastructure, should not redirect significant resources to complex
tender processes on an overly regular basis. This would reduce the value for money.
Rec 4) Ensure investment in ILC enhances responsive local networks and respects
social-capital contributions. Fund allocation decisions should be informed by guidelines
that promote value for money, collaboration, long-term contracts and long-term outcomes.
Quality control and contestability should be supported by provider impact evaluation and
independent governance panels. Bulk purchasing should be used where it is impractical
to use individualised funding.
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National Disability Services: Submission on the NDIS framework for ILC services
How do you see the interface between ILC functions and activities and
the interaction with the mainstream service system?
The framework acknowledges that the National Disability Strategy is the main driver for
improving disability inclusion in mainstream services, and progress on this is essential for
success of the NDIA and ILC services. However, to date progress beyond the disability
sector has been far too slow and there is little clarity in the framework about how to
change this. There needs to be a substantive recommitment across all governments to
the social and economic imperatives that underpin the Strategy.
Rec 5) Strengthen national, state/territory and local monitoring of the National
Disability Strategy. It is imperative that all governments continue to implement and
monitor this strategy. This should include annual reports to all Parliaments ensuring a bipartisan profile and accountability across government responsibilities. It should also
include a strategy of ‘league tables’ for local bodies that benchmark inclusive and
accessible communities and create local incentives.
More could be made of the role of local government to ensure better connections across
sectors. Local government is responsible for planning inclusive communities as well as
implementing aspects of the National Disability Strategy. They also have infrastructure
and networks and in many cases are already providing some disability ILC services.
Rec 6) Develop a local government strategy for disability ILC. Work with local
government stakeholders and disability sector stakeholders to clarify the role of local
government in providing ILC services or liaising with other ILC providers.
A current challenge for interfaces between service systems is agreeing on responsibility
for service coordination for clients with complex and multiple needs. It is in the interests of
these individuals and of the tax payer to ensure effective coordination occurs. From an
actuarial point of view the NDIA may find that early intervention with coordination support
for some complex clients, who do not yet have significant disability needs but who will
likely develop them, could pay off (see m in Appendix A). However, there are inevitably
debates about which sector the greatest need is in and potential cost shifting. If these
debates delay essential services and crisis prevention they are extremely unproductive.
Rec 7) Agree on protocols for addressing coordination across sectors for clients
with multiple and complex needs. The ILC service role, particularly for local area
coordinators, includes liaison with other services on complex coordination provision.
Where an individual is an NDIS participant it may be appropriate to provide coordination
support from individual packages, however some non-participants may also warrant
intermittent support, including coordination. There should be agreed protocols providing
guidance on how to manage these complex interfaces with minimal disruption for front
line support and sensible resource allocation that prevents crisis.
NDS believes that the local connections with mainstream services and other community
supports will be far more effectively maintained if the local coordinator role sits in the
community and not in the NDIA. Substantive and specialist disability coordination
expertise currently sits in the disability sector and it will be difficult to recruit this into the
NDIA.
Rec 8) Outsource the Local Area Coordination function. This will help to sustain
existing networks and support coordination networks.
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National Disability Services: Submission on the NDIS framework for ILC services
In summary
NDS recommends that to create effective ILC services, governments and the NDIA
should:
•
Invest in research, data collection and related dissemination about ILC services.
•
Commit to continuity of ILC support throughout implementation of the NDIS.
Governments should treat current ILC services as a starting point for developing a
comprehensive and national ILC network.
•
Actively engage existing ILC providers in co-design to develop a more detailed plan
for any transfer of resources and the full implementation of the ILC.
•
Ensure investment in ILC enhances responsive local networks and respects socialcapital contributions. Bulk purchasing should be used where it is impractical to use
individualised funding.
•
Strengthen national, state/territory and local monitoring of the National Disability
Strategy.
•
Develop a local government strategy for disability ILC.
•
Agree on protocols for addressing coordination across sectors for clients with multiple
and complex needs.
•
Outsource the Local Area Coordination function.
Appendix A: Case studies illustrating the diversity and value of
existing ILC services
The following de-identified case studies are of currently operating ILC services that are
consistent with the proposed five ILC streams:
a. The Local Z (specific diagnosis) Association Network provides a range of
community recreation programs with a focus on enhancing the lives of those affected
by Z, preventing crisis and promoting social inclusion. When a family receives a
diagnosis of Z, they are often overwhelmed and do not know where or how to seek
information and assistance. It is services like peer support, information provision and
referrals that help prevent families from going into crisis and give them the coping
mechanisms they require to make the important decisions. The Z Association employs
regional advisors, provides an equipment library and offers volunteer coordination
providing weekends away for adults and children affected by Z.
b. The State Y Family Education Association provides information and workshop
training for parents of people who have received a Y diagnosis. In addition the Y
Association promotes and disseminates research and evaluation to ensure parent
choice is not compromised by lack of reliable information regarding support for Y.
There are also parent led support groups offering a mutually supportive process to
assist families.
c. The National X Association combine awareness raising with fund raising and
provide prevention information as well as intermittent emergency support to prevent
the use of ambulances and other crisis services for people with X. They have
developed a detailed cost benefit analysis of why good information and advice
reduces the long-term support costs of X.
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National Disability Services: Submission on the NDIS framework for ILC services
d. Royal W Institute offers outreach to indigenous and CALD communities with W, it
provides alternative format production, coordinates a host family program, and
provides a teleschool.
e. National Peak Body for Specialist V Associations provides generic back of house
support for a network of V Associations including maintenance of a website, promotion
of best practice (such as health and wellbeing guidance) and research. It also
interfaces with national or state consultation processes to enable co-design and
systemic advocacy.
f. The U Alliance focuses on support for people affected by U conditions who require
incidental but targeted support. Otherwise there will likely be a deterioration of the
condition and informal support circumstances resulting in the need for more intensive
and ongoing support.
g. Disability Officers employed in local authorities provide information, advice,
community development, problem solving, coordination and dissemination of good
practice. The employment arrangement for this role varies across some States, some
combine with aged care funding. There is possibly an overlap with the Local Area
Coordinator (LAC) role.
h. Independent Living Centres provide independent information and advice about
assistive technology, including show rooms and allied health professional expertise by
phone.
i.
Volunteer Coordination Services match a child or young person with disability with
a host volunteer family or individual, who then looks after the young person on a
regular basis (such as one weekend a month). The service assesses the suitability of
prospective host volunteers, who may have no previous experience with disability.
Often people with disability develop mutually beneficial relationships with their host
families. This organisation also coordinates a variety of volunteer-assisted recreational
and social programs including family camps, sibling activities and parent support
groups. The service provides opportunities for natural friendships and recreational
experiences, as well as giving families a break or support.
j.
Technical Aid Volunteers draw on the qualified volunteers (e.g. professional
engineers, architects, technicians and tradespeople) in concert with occupational
therapists, physiotherapists, and rehabilitation specialists. These volunteers meet
specific life-style equipment needs through advice, design, construction and adaption
of technology.
k. Independent Specialist Advisors employed directly by governments to assist
families, mainstream providers (housing, education and health) as well as disability
support services with specialist advice around an individual’s needs. These services
may include positive behaviour advice, communication or technology advice and can
enhance independence and informal support as well as mitigate the need for more
intensive or restrictive support.
l.
The Hub and Spoke Communication Network provides a state-wide network of
individual and community focused services. Expert advice and aids related to
communication are available for individuals as well as community development and
broader promotion of fully accessible communication. One of many community
initiatives is a choir for people with brain injuries. This service provides a mix of
individualised (tier 3) support and ILC support.
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National Disability Services: Submission on the NDIS framework for ILC services
m. The Multiple and Complex Needs Coordination Service is jointly funded by various
sectors including disability support and is called upon by government for clients with a
range of complex needs across health, mental health, disability, child protection,
juvenile justice, drug and alcohol treatment, and/or housing. This service addresses
barriers to responsive services by negotiating cross agency plans. A client example is
a homeless young person with unmanaged diabetes and a minor brain injury. Health,
housing and disability support services need to agree on a plan to prevent the
individual being discharged from emergency hospital treatment to at risk housing.
Otherwise the likely result is significant disability and ongoing support needs, amongst
other poor outcomes.
March 2015
Contact:
Dr Ken Baker
Chief Executive
National Disability Services
Ph: 02 6283 3200
Mob: 0409 606 240
[email protected]
National Disability Services is the peak industry body for non-government disability
services. Its purpose is to promote and advance services for people with disability. Its
Australia-wide membership includes more than 1000 non-government organisations,
which support people with all forms of disability. Its members collectively provide the full
range of disability services—from accommodation support, respite and therapy to
community access and employment. NDS provides information and networking
opportunities to its members and policy advice to State, Territory and Federal
governments.
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