here - National Respite Association Inc

ILC Submission
ABN 68 985 026 718
1. Who is National Respite?
National Respite is the national peak body for small-medium not for profits that provide
respite outcomes in the disability, aged care, mental health and carer support service
systems. Most of our members are in NSW and ACT though we also have members in
Western Australia, Tasmania, Northern Territory, South Australia and we work
collaboratively with Interchange South Australia and Victoria.
Our focus is the:
Interconnected wellbeing of people with disability, frailty from age or mental illness;
And their chosen carers, families and informal supports.
Our vision is communities of strong relationships which support the lives people choose.
2. ILC Conceptual Framework
The NDIA paper sets out policy parameters for Information, Linkages and Capacity Building
(ILC). ILC will target mainstream services and local communities to support them to be more
inclusive whilst also providing some early intervention, prevention and capacity building
disability specific non-individualised supports to people with disability and their carers to
promote social and economic participation of people with disability.
National Respite supports the creation of an ILC program. However, we strongly believe that
for the program to be sustainable, evidence based and success driven, ILC needs to be
driven with a strong conceptual framework. This can be achieved by:
i.
ii.
iii.
Ensuring ILC is outcomes driven
Measuring outcomes across ILC streams
Consolidating streams based on modes of engagement
i. ILC Outcomes
We agree that, ‘ILC is a key component of the NDIS insurance model and will contribute to
the sustainability of the Scheme.’1 However, your current paper is unclear on how ILC
stream success will be measured. We note that ILC is intended to be a population level
approach to supporting people with disability and their carers and we support this.
However, the purpose of this population level approach is to improve outcomes for people
with disability and their carers as populations, and therefore ILC outcomes should be driven
by outcomes for people with disability and their carers. The NDIS is in the process of
adopting an outcomes framework for NDIS participants and their carers.2 These outcomes
should be considered and modified to suit the aims of ILC.
1
NDIA Framework for Information, Linkages and Capacity Building, pg. 1.
http://www.ndis.gov.au/sites/default/files/documents/ILC%20Policy%20Framework_0.pdf
2
Bruce Bonyhady, Speech, Carers Australia Conference, 16-18 December, 2014.
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ILC Submission
ABN 68 985 026 718
RECOMMENDATION 1: The NDIA explicitly adopts outcomes for people with
disability and their carers to measure success of ILC streams.
The outcomes measurement for people with disability might read:
1. Participation in community
2. Strong relationships
The outcomes measurement for carers might read:
1. Resilience of families and carers
2. Capacity to participate meaningfully in employment or the community
ii. Measuring ILC Success
Australia has an extensive research background in the area of outcomes measurement for
population level interventions in public health (such as responsible serving of alcohol, antismoking campaigns and drink driving) which could be applied to ILC if the Agency adopted
clear outcomes for the program. Measuring stream success against outcomes for people
with disability and their carers also means that the NDIA has a way to drive innovation and
competition both within the disability specific service sector and the mainstream service
system. Organisations who deliver on ILC outcomes could be paid for success.
RECOMMENDATION 2: The NDIA measures the success of adopted ILC outcomes
and uses them to guide purchases and contestability. Mainstream services,
community and disability specific providers should be rewarded when they meet
outcomes. This would guide purchase contestability and drive innovation.
iii. Consolidated streams based on modes of engagement
We believe that the proposed five streams could be consolidated into three streams based
on modes of engagement.
RECOMMENDATION 3: The NDIA should adopt the below three ILC streams:
1. Information, linkages and referral – for everyone in the community
2. Community Awareness and Capacity Building - for mainstream services and
community
3. Individual Capacity Building - for people with disability and carers
Local area co-ordinators should play a role in all three of these streams and their role is
discussed in greater detail at 5: Role of LACs in ILC.
http://www.ndis.gov.au/sites/default/files/documents/bonyhady_speech_careers_confernce_nov1
4.pdf.
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ILC Submission
ABN 68 985 026 718
3. ILC Target Sub Populations
Though the ILC program targets all of the Australian population, its success rates will be
measured by outcomes achieved for particular sub populations outlined in your paper.
National Respite believes that there are two areas that need Agency commitment to ensure
ILC, and indeed wider NDIS, sustainability and success.
i.
Clear target sub-population groups
ii.
Disability service system mapping
These are discussed in greater detail below.
i.
Clear Target Sub-Population Groups
The NDIA paper draws particular attention to the following sub groups (most likely to use
the Individual Capacity Building stream):

People who need support so that their capacity to live independently does not
deteriorate to a point where they would meet the access criteria for the NDIS and
require a plan to participate socially or economically in the community

People who would otherwise meet the access criteria for the NDIS and would
therefore be eligible for a plan, but only require low levels of support that could be
provided through ILC

People who access specialist supports through a plan but also have needs that can
(and should) be provided through ILC

People who need low levels of support to live independently in the community, but
are not eligible for a plan3
We believe that carer support is an important federal issue. Given that the Individual
Capacity Building stream makes a clear commitment to providing support to carers, such as
carer counselling and programs, including breaks and peer support,4 we believe that the
NDIA should make carers of people with a disability a target sub population for ILC. This
would make it easier to adopt clear carer outcomes to measure success of ILC supports for
this target group and would also ensure that carers received supports in their own right.
RECOMMENDATION 4: The NDIA should state in its policy framework ILC target sub
populations and link them to clear ILC outcomes. The paper should be clear that one
such target sub population is carers. The paper could read:
‘Carers of people with a disability, irrespective of if the person with disability is
eligible for an NDIS plan.’
3
4
NDIA Framework for Information, Linkages and Capacity Building, pg. 4.
Ibid, pg. 7.
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ILC Submission
ABN 68 985 026 718
ii.
Disability Service system mapping
We strongly support the view that it is difficult to assess ILC without knowledge of the
current levels of funding and service provision at the state level and how these will interact
with ILC, and in particular target sub-populations given current ongoing negotiations of
bilateral agreements between state/territory and federal government. There is a danger
that we are implementing policy to meet timelines, rather than putting people with
disability and carers at the centre of policy decision making. It is understood that some
states are continuing to provide baseline community funding for people with disability,
while others such as ACT and NSW are withdrawing from funding and service provision,
handing responsibility for these target sub populations to Commonwealth.
For affected sub populations, it is unclear:



How ILC will be a national consistent program if some states and territories have
different agreements to others.
What the level of need is for these sub population groups, in particular, the need for
individual disability specific supports to promote capacity building
What innovative capacity building supports have been provided by disability specific
providers which could be grown into ILC.
RECOMMENDATION 5: The Commonwealth and states agreements should understand
current use of disability specific supports through service system mapping as the first
activity the NDIA does in ILC implementation. Service system mapping should:
a) Maximise understanding of current use of disability specific supports by these
sub-populations to build individual capacity. This information should inform
funding decisions about the Individual Capacity Building stream
b) Identify innovations which promote individual capacity building to grow
these into ILC.
4. Stream Issues: Individual Capacity Building
In addition to broader conceptual recommendations, National Respite has specific
recommendations in relation to the Individual Capacity Building stream because of the
stream’s importance to the sub-populations outlined at 3i. The key issues are:
i.
Flexible disability specific support and Individual Capacity Building
ii.
Carer support in Individual Capacity Building
These issues are described in detail below.
i.
Flexible Disability Support and Individual Capacity Building
National Respite is concerned that unless ILC makes an explicit commitment within the
Individual Capacity Building stream to ongoing advance purchase for some best practice
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ILC Submission
ABN 68 985 026 718
disability specific flexible supports which build capacity, promote independence, the
information, referral and linkages component of ILC will not be adequate and people will
deteriorate until they require Scheme assistance. There is a need for advance purchased,
flexible disability specific support in ILC because:

Mainstream and community capacity building takes time

Flexible supports promote sustainable community inclusion

It is understood some states will not continue to fund state disability specific services
in their own right

Flexible supports are preventative and are best placed to support people likely to fall
just outside of access guidelines5
However, if Individual Capacity Building is designed and funded well, a LAC could, for
example, support a person with disability to access mainstream community through
linkages, information and referral to wider community supported by an advance purchased
flexible disability system specific support. One such best practice flexible disability service
specific model is the Interchange model described in the appendix at the back of this
submission.
The Interchange model:

Costs an average of $11.30 an hour

Blends informal, formal and volunteer supports to promote meaningful inclusion

Works well in building capacity of people likely to fall just outside of access
guidelines
RECOMMENDATION 6: Preventative disability specific supports for people likely to fall
just outside of access guidelines should be funded in the Individual Capacity Building
stream.
RECOMMENDATION 7: Flexible blended formal, informal and volunteer support is
named explicitly as an example of suitable supports under the Individual Capacity
Building stream.
5
This is especially the case for people with ASDs, intellectual or other developmental disabilities likely to
comprise the sub-population who fall just outside of access guidelines. People with these disabilities often
have difficulties transferring knowledge and skills across contexts without facilitated support, even with a high
functioning diagnosis. That is not to say that people with these disabilities can’t be part of their community or
master knowledge and skills, but rather that individual capacity building for this group takes time and often
requires facilitated disability specific flexible support to make meaningful community inclusion sustainable.
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ILC Submission
ABN 68 985 026 718
RECOMMENDATION 8: The Agency makes provisions within ILC to advance purchase
volunteer program coordination, training and support where those volunteer programs
are best practice and support social and economic participation.
RECOMMENDATION 9: The Agency considers growing the Interchange model nationally
within ILC. The model promotes capacity building for both carers and people with
disability.
ii.
Carer support in Individual Capacity Building
DSS is currently working on co-design of a national Integrated Carer Support Programme
which would support carers in their own right. However, it is unclear how this programme
will be funded or when national roll-out will commence. National Respite strongly supports
the inclusion of some carer support within ILC, and in particular the Individual Capacity
Building stream. As well as this, there should be a parallel Integrated Carer Support Program
available to carers encompassing respite and other non-respite supports.
RECOMMENDATION 10: There should be parallel track to carer support for carers
supporting people with disability through ILC and Integrated Carer Support.
RECOMMENDATION 11: This parallel track, ‘no wrong door’ policy would mean that
carers would be acknowledged as people with support needs in their own right, not
simply in relation to the needs of the person/s they care for. This is important
because carers may have high support needs, even though the person/s they care
for have low support needs.
RECOMMENDATION 12: Individual Capacity Building for carers is designed so that
they receive that individual capacity building support in their own right. This would
require needs assessment, information and referral, respite, counselling, peer
support, education and training and individual advocacy for carers.
RECOMMENDATION 13: ILC and Integrated Carer Support at DSS engage with each
other on carer support issues to create carer support for carers in their own right
under ILC.
5. Role of LACs in ILC
National Respite strongly supports the LAC role within ILC as a vital aspect of building
community capacity and advocating on behalf of individuals for greater economic and social
participation. We propose that the role of LACs should be informed by the lessons learnt by
the similar Ability and Early Links programs in NSW.6 Urbis are currently undertaking an
6
Ability and Early Links work with people with disability, their families and carers to help them plan for their
future, build on their strengths and skills, and develop networks in their own communities so they can do what
they want with their lives - outside of the traditional disability service system. Linkers also work with local
communities to help them become more welcoming and inclusive of people with disability.
http://www.adhc.nsw.gov.au/individuals/inclusion_and_participation/ability_links_nsw
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ILC Submission
ABN 68 985 026 718
evaluation of the Ability Links program which will conclude in 2016. The two early reports as
well as ADHC Ability Link newsletters indicate relevant lessons for the roll out of LAC in ILC:7
Lessons of Ability Links:
1. Where autism or intellectual disability was identified as a disability, linkers provided
ongoing facilitated support to the person. At the time of evaluation, these people
were still receiving ongoing support.
2. All of the case studies for Early Links involved supporting the carer to reconnect with
community or advocate on behalf of their child. In many Ability Links case studies,
linkers were also assisting the carer to access community.
3. Linkers, and especially linkers working with children and families, assisted people to
navigate the current service system and referred for access to support in addition to
mainstream and community activities. The paper does not state how many people
were referred to disability or mental health specific service providers.
4. The evaluation did not measure the sustainability of linkages made to mainstream
services and community, focussing on the links made.
5. Interviews with people with disability, carers and linkers found the following
common theme:
a. Personal growth and behavioural change did not come easily for people
accessing the program. However, the paper did not state the statistics for
those who approached the program but ceased engagement. It also did not
state what behavioural change was required.
b. Linkers were challenged by the process of linking people with community
groups and services and generating community engagement. The paper did
not state what these challenges were.
6. People valued the time Linkers spent talking one to one with participants about the
goals they wanted to achieve, the lack of paperwork and forms to fill out, and the
home visits.
7
http://www.abilitylinksevaluation.com.au/reports/.
http://www.adhc.nsw.gov.au/__data/assets/file/0003/312276/ALNSW-Newsletter-Issue-3-October-2014.pdf.
http://www.adhc.nsw.gov.au/__data/assets/file/0018/313128/ALNSW-Newsletter,-Issue-2,-February2014.pdf.
http://www.adhc.nsw.gov.au/__data/assets/file/0016/313126/ALNSW-Newsletter,-Issue-1,-October2013.pdf.
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ILC Submission
ABN 68 985 026 718
National Respite makes the following recommendations on the basis of the Ability Links
program:
RECOMMENDATION 14: The paper should clarify that LACs work one on one with
anyone with a disability or their carer who approaches the ILC program, not simply
those with plans.
RECOMMENDATION 15: The paper should clarify that part of the LAC role may
require ongoing facilitated support in the short to medium term depending on the
person’s needs. This support could be provided by a LAC or by the Individual
Capacity Building stream.
RECOMMENDATION 16: The NDIA should consider a strategy for engaging with
people with disability and their carers through LACs and work with consumers to
understand reasons for barriers to ongoing engagement with community. The
findings should inform ILC roll-out and the development of the LAC role.
RECOMMENDATION 17: The NDIA should engage with Ability Links to find why the
process of linking to community can be challenging for linkers who currently perform
a similar role to LACs. The findings should inform ILC roll-out and the development of
the LAC role.
RECOMMENDATION 18: If a person is deemed ineligible for the Scheme, they should
be put in contact with a LAC to access ILC support.
There is also some debate on where LAC is best placed in the current service system to
provide support. Though the Ability Links program currently uses not for profit’s including St
Vincent’s and United Care, National Respite believes that the LAC role could be placed with
local councils given local councils geographical reach and knowledge of local events and
initiatives. Local councils:

Guarantee geographic coverage of the whole country.

People use councils as a source of information already and trust councils to be
independent.
RECOMMENDATION 19: The LAC is trialled with local council under ILC. A LAC could
also be trialled in local community areas such as libraries, neighbourhood centres or
local health clinics.
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ILC Submission
ABN 68 985 026 718
Appendix: Case Study: Interchange Model of Support
The Interchange model of disability support began when frustrated families created their
own services to meet their children’s needs. Today, there are Interchange services in VIC,
WA, NSW, QLD, SA and TAS which are flexible, light touch and low cost, community
inclusion driven and social capital builders. The Interchange model would work well in the
ILC space because of the shared aims of: blended low cost support to build individual
capacity, whole of family approach, early intervention and prevention for children and
expertise in flexible facilitated support for people likely to just fall outside access
requirements or require ongoing low level support. We use the case study of Interchange
Illawarra8 to highlight how the model fits within ILC.
Blended informal, volunteer and formal supports which are low level, low cost and may
be ongoing, episodic or one off to promote individual capacity building for both person
with disability and their carer.

Paid workers – 69 casual paid workers

Volunteers – 151 volunteers
 Family Managed Allocation9 – 70-80% of all families of 573
The family and person with disability can choose who supports the person with disability
from their personal support network. For example, a young man used FMA to pay a friend
petrol money to drive him to and from his TAFE course. His friend was also attending TAFE
and was happy with the arrangement. This meant the person with disability did not need
funding for a support worker to assist with transport and he was able to grow his informal
support network. The average cost of FMA is $1500 a year, while a paid worker is $28 000 a
year.
The AGM report also indicates the low cost of an Interchange style capacity building
program with the average unit cost of providing support $11.30 an hour:
using a holistic approach utilising a number of support models including Family
Managed Allocations, volunteers and paid worker support. If this support was
provided using only a worker model at the suggested NDIA unit costing of $34.05,
the minimum annual turnover for Interchange Illawarra would increase from
$2,100,000 to $6,280,000.10
8
http://interchangeillawarra.org/.
For more explanation of the FMA model, see this presentation:
http://apps.carersnsw.org.au/userfiles/files/Families%20Steering%20their%20Way%20to%20a%20Better%20F
uture%20-%20Interchange%20Illawarra.pdf.
10
Interchange Illawarra AGM Report, file:///C:/Users/Maureen.Flynn/Downloads/Annual_Report_201213_V1.pdf, pg. 21.
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ILC Submission
ABN 68 985 026 718
Whole of family approach to support which matches the ILC Program’s intention to
support carers as well as people with disability.
Interchange does this by building family resilience at the same time as building capacity of
the participant through community inclusion and growth in personal independence.
Interchange Illawarra supports 25 year old Ryan, a man with intellectual disability, at his and
his family’s request. He accesses host family and peer support. Ryan spends one weekend
per month with his volunteer host family. He also does social activities on Saturday through
the Interchange volunteer run peer support program. Ryan has become part of his volunteer
host family’s wider informal network and has made friends. He also has been able to do
regular community activities like other people his age, for example, go to the pub, with the
assistance of the volunteer run peer support program. At the same time, his family feel
resilient because they are receiving respite.
Early intervention and prevention programs for children.
A number of Interchange Illawarra’s programs promote an early intervention and
prevention approach for children with disabilities. Programs include host family, peer
support, the autism specific Saturplay program and respite provided using volunteers where
children are supported to safely access community and build skills.
Expertise in flexible facilitated support for people likely to fall just outside of access
requirements.
Interchange Illawarra was approached in 2012 by Joe,11 a young man with high functioning
autism, who wished to attend university. He had achieved a high ATAR but due to high
levels of anxiety as a result of his disability and inflexible university supports best suited to
people with physical disability, he was worried that he would not be able to complete his
Mathematics degree. Interchange advocated on Joe’s behalf, meeting with the university to
negotiate the kinds of support that Joe required. The university did not feel they had
expertise to support the young man in managing his anxiety or transitioning to new classes
and people. Instead, the university agreed to pay for a volunteer from Interchange to take
notes in lectures and tutorials and also to provide social support on campus.
Joe told Interchange that he wanted to use a friend that he trusted as his volunteer.
Interchange contacted Elise and registered her as an Interchange employee so that she
could support the young man. Elise loved working with Anthony and soon she was putting in
more hours than the university was reimbursing her as a volunteer for. People in Joe’s
classes thought Elise was a fellow class mate, and she made sure Anthony got involved with
university community at the Unibar and with clubs and societies. After a semester, Elise
gradually withdrew support so that Joe travelled to university and attended class by himself.
He now works for PriceWaterHouseCooper.
11
Name changed.
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ILC Submission
ABN 68 985 026 718
The cost of using Elise as a volunteer worker was $11.30 an hour. This is cheaper than
paying a LAC or Ability Linker or a paid worker to provide ongoing facilitated support. The
work was short term and built the young man’s capacity to participate socially and
economically in Australian society. It also drew on, and strengthened, relationships in his
informal support network by using Elise as a volunteer.
Challenges for implementing the Interchange model in ILC:
Though the above case study indicates why the Interchange model fits well into the ILC
framework, as do studies done by National Respite and Interchange INC (VIC), 12 the model
faces NDIS challenges. The volunteer aspect of the model, so important in building social
capital, promoting community inclusion and increasing family and person with disability
informal support networks, needs adequate funding for recruitment, training, and coordination of support to survive. As the Interchange INC paper demonstrates, costs are
higher upfront, but decrease over each year of support use. In using an ILC capacity building
funding hypothetical example, an Interchange Host Program provider could hypothetically
receive an approximate annual amount equivalent to 1,570 hours of volunteer support for:
 developing a pool of 20 volunteers
 intake, assessment and pre-matching processes for 10 participants
 facilitating five new matches between participants and volunteers, and
 Supporting 15 existing matches.13
Submission Contact:
Maureen Flynn
Membership and Policy Officer
National Respite
[email protected]
(02) 9789 1348
12
National Respite Volunteer and Flexible Family Supports Report:
http://nationalrespiteaustralia.com.au/news/volunteerflexible-respite-project-report/.
Interchange Inc Report: http://nationalrespiteaustralia.com.au/wp-content/uploads/2014/09/InterchangeBusiness-Case-September-2014-2.pdf.
13
Volunteer supported service models within the NDIS context through the lens of the Interchange Host
Program, pg 21.
http://nationalrespiteaustralia.com.au/wp-content/uploads/2014/09/Interchange-Business-Case-September2014-2.pdf.
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