Co-ordinating and Providing Emergency Support in NDIS

ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
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. NDIS Approach to Emergency Co-ordination and Support
The NDIS operates on the principle that supports provided now and allocated on an actuarial basis
increase social and economic participation of people with disability, prevent deterioration in
functionality and improve natural relationships. The NDIA approach to support aims to minimise red
tape for the person with disability and use the planning process to support participants, including
through emergency and crisis situations.
The NDIA does not intend to play a role in emergency coordination. It does have two processes for
ensuring that emergency/crisis support can be provided:
1. Plan amendment - with supports funded in retrospect
2. Contingency planning – as part of the initial supports discussion with planner1
Though National Respite understands the NDIA’s desire to fund participants on the basis of goals and
aspirations rather than from emergency to emergency, anecdotally we have heard from consumers
and providers in the trial sites2 that the NDIS response to emergency support and co-ordination
could be improved. It has been reported that lack of clarity around areas of emergency co-ordination
and support policy has caused:

Stress and hardship to participants and carers, including where there have been incidences
of relinquishment.3
1
Deborah Hoffman, Trial Site Co-ordinator, NDS, ‘Frequently Asked Questions as of October 2014,’ pg. 12.
http://nationalrespiteaustralia.com.au/wp-content/uploads/2015/01/NDIS-FAQs-Oct-2014.pdf.
2
We run two-monthly phone-hook-ups with five trial sites, run regular regional meetings in the Hunter and
ACT and have run forums in Hunter and Barwon on emergency support and coordination.
3
‘In one case a family were out of state when they heard that support had irrevocably broken down, and had
to try and address the care of their loved one from a distance. They hadn’t factored emergency/crisis support
in their planning process and they didn’t contact their usual service or the NDIA about the emergency as they
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ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position

Service providers have also reported considering turning people away in future when they
require emergency supports because the turn around on reimbursement from the NDIA for
provision of supports affects cash flow4 or because the person doesn’t yet have an approved
NDIA plan even as they may be Scheme eligible.5
We believe that there are four key areas where the NDIA could strengthen its position on emergency
support and coordination:
A.
B.
C.
D.
Clarifying role of Agency in co-ordination of emergency/crisis support
Clarifying NDIS emergency/crisis supports process
Strengthening respite in the Scheme
Data collection
These are discussed in detail below.
3. Particular Issues
A. Role of Agency in Co-ordinating Emergency/Crisis Support
The experience of the trial sites indicates that the role of co-ordination of emergency supports
cannot be underestimated in ensuring positive outcomes for people with disability in
emergency/crisis situations.6 It is also well understood that the NDIA does not wish to displace or
replicate the role of state government or other federally funded emergency/crisis support services
such as Commonwealth Respite Centres in responding to emergency/crisis situations, nor does it
wish to provide emergency/crisis support directly as a provider would. However, changes to the
funding landscape point to the need for greater clarity of the NDIA role in relation to co-ordination
of supports. One case study from the Hunter highlights the cost to consumers of not having an
established emergency coordination pathway for NDIS participants:
didn’t know who to contact,’ National Respite, ‘Emergency Care Forum Report’, 2014, pg. 13.
http://nationalrespiteaustralia.com.au/wp-content/uploads/2015/02/Emergency-Forums-Final-ReportCombined.pdf.
4
Services in trial sites have told us there can be an 8 week turnaround on reimbursement through the Agency
for coordinating and providing emergency care. There was one service who had submitted 7 quotes and still
not been approved after 8 weeks of providing support due to a backlog on plan amendments. This has serious
implications for cash flow, particularly for micro and small organisations.
5
‘Providers can receive 2-3 phone calls a day from a person not currently accessing NDIS plans or deemed
ineligible for NDIS supports, but who desperately need help to prevent a crisis situation… if the person doesn’t
qualify for funding, there is nothing a provider can do, nor is there a clear place or process for a provider to
refer the person on,’ National Respite, ‘Emergency Care Forum Report,’ 2014, pg. 8.
6
National Respite, ‘Emergency Care Forum Report’, 2014. http://nationalrespiteaustralia.com.au/wpcontent/uploads/2015/02/Emergency-Forums-Final-Report-Combined.pdf.
2
ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position





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The participants carer is an 86 year old who was hospitalised
The participant was given additional 28 days respite support in their plan to support new
informal carers
That 28 days was used and his carers decided they could no longer support the participant in
their home
Service provider rang to source help with finding supported accommodation as the
participant will need 24 hour care, but were told by the state that the participant didn’t
meet their guidelines because they didn’t live with a carer and that it was an NDIS issue
NDIS locally have been unable to respond to email or phone calls from the service provider
to find an emergency accommodation solution
The participant is waiting for resolution, though has just been advised by the state
department that accommodation can be found over the long weekend
There are three key reasons why the NDIA should have a role in coordination of emergency support:
i.
ii.
iii.
Commonwealth respite centres are insufficiently funded to continue coordination of
emergency without funding from the primary service system
It is understood that states are withdrawing from funding and coordinating emergency/crisis
supports
Social housing is in crisis – primary service system funded emergency coordination is needed
to manage shortages in emergency/crisis situations
i.
Commonwealth Respite Centres
Commonwealth Respite Centres currently play an important role across the primary service systems
of disability, aged care, mental illness and chronic illness in co-ordinating and providing
emergency/crisis support. They are a nationally established and known network who is local.
Amongst other things they:



Coordinate, broker and provide emergency respite and supports
Manage respite beds across residential and health systems to maximise occupancy
Use brokerage to help pay for supports and prevents neglect and over-reliance on
residential care7
Though their funding contract has been extended until 2017 pending roll-out of the Integrated Carer
Support Programme, much of their funding for people with disability and their carers is ear-marked
for collapse into the NDIS under bilateral agreements. This includes funding for The Young Carers
Program, Mental Health Respite: Carer Support and Respite for Carers of People with Severe and
Profound Disabilities. Indeed, we have had contact from CRCCs in trial sites indicating that funding
7
National Respite, ‘Carer Support Consultation Notes QLD and WA,’
http://nationalrespiteaustralia.com.au/news/carer-support-consultation-notes-qld-and-wa/,
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ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
for these programs has already begun to be tipped into NDIS.8 Furthermore, the National Respite for
Carers Program (NRCP) and HACC funding will become part of aged care reform and CHSP, with
clients with disability and their carers grandfathered. These funding changes compounded will
significantly reduce Commonwealth Respite Centre ability to provide immediate and effective coordination of emergency/crisis care to NDIS participants unless they are funded to do so by the
NDIA.
ii.
State Governments and Emergency Co-ordination
In addition to the DSS funded Commonwealth Respite Centres, state government departments have
traditionally also co-ordinated emergency/crisis care through a referral, assessment and case
management process and then advance purchased disability specific provider supports.9
Transitioning into NDIS it is unlikely that states, even ones which hold some residual funding for
disability specific support in their bilateral agreement, will remain in emergency coordination for
NDIS participants.
iii.
Social Housing Shortage
Social housing and accommodation for people with disability has increasingly been highlighted as an
enormous issue for Australia moving into NDIS.10 The NDIA estimates that there will be 122,000 NDIS
participants without access to housing once the NDIS is fully implemented due to a lack of affordable
and appropriate housing supply.11 The NDIA wrote an options paper to address the crisis but the
report has sat with government for over 12 months. An ageing carer population, increasing numbers
of young people in nursing homes and a general increase in housing prices across the nation, have
made housing a serious concern for people with disabilities wishing to exercise choice and control
and enjoy quality relationships with their loved ones.
The housing shortage has no easy solutions, but it has obvious ramifications for the coordination of
emergency/crisis support: for example, when relationships break down or when employment
circumstances change for people with disability, the risk of homelessness is intensified, making
coordination key to better outcomes. It has fallen to CRCCs, service providers and disability specific
state departments to coordinate emergency accommodation in the disability sector. With state
withdrawal from emergency coordination, it is vital that CRCCs and other providers are able to
continue the work of sourcing emergency accommodation and are funded appropriately by the
primary service system to do so.
8
CRCCs in trial sites in SA, WA, ACT, Hunter and Barwon have told us that they have been told to notify the
NDIS before providing co-ordination and support to participants due to changing funding arrangements.
9
Internal department documentation on emergency co-ordination and support was provided by FACS in NSW
and DHS in VIC to support this.
10
The Every Australian Counts Campaign being the most prominent example.
11
http://www.nds.org.au/news/article/3452.
4
ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
iv.
Role of the Agency in Emergency Co-ordination
It should not be the role of the NDIA to engage directly in co-ordination and provision of
emergency/crisis support for NDIS participants. However, it is apparent that the NDIA will need to
play a role in ensuring that the work done previously by federal funding streams and state
departments in funding emergency/crisis co-ordination is continued by an appropriate substitute.
Recommendation 1: The NDIS should trial advance purchase of emergency support
coordination in trial sites, publicising 1 or 2 agencies that agree to take on emergency
coordination on a 24/7 basis.The NDIA should adopt the following principles in funding coordination of emergency/crisis supports for people with disability:
Principle 1: The NDIA should play a direct funding role in ensuring co-ordination of
emergency/crisis supports continue for NDIS participants.
Principle 2: The NDIA should advance purchase emergency co-ordination from appropriate
known regional bodies such as CRCCs until such a time as this is more appropriately funded
elsewhere (such as through Integrated Carer Support) for participants with plans.
Principle 3: In advance purchasing emergency co-ordination, the NDIA should include funds
for: 24 hour emergency line, co-ordination of supports including funding which allows for
brokerage, referral and assessment.
Principle 4: Local emergency coordination will provide coordination support beyond
emergency NDIS supports in the price list (such as respite). Coordination should also assist
with the seeking of emergency/crisis accommodation options.
Principle 5: Where advance purchase coordination funds are not expended by an agreed
time, these funds could be returned to the NDIA for redistribution.
B. Communicating NDIS Emergency/Crisis Funded Supports Process
The NDIA currently has the below two processes for putting emergency supports in a plan:
1. Emergency/crisis happens – the participant contacts their provider – support is provided and
the NDIA notified – the plan is amended – the service is reimbursed in retrospect for
supports provided (Process 1: Plan Amendment)
2. The planner meets the participant – the planner puts contingency supports in a plan – an
emergency/crisis happens – the supports are used (Process 2: Contingency Planning)
It is clear from emergency forums run in the Hunter and Barwon that people are unaware or
confused about these processes. A targeted communications strategy for each Process listed above
could assist the Agency to alleviate confusion and stress for participants and their families, planners
and providers.
i.
Emergency Supports Process 1 – Plan Amendment
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ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
National Respite makes the following recommendations on communicating the plan amendment
process to participants and their families and providers:
Recommendation 2: The NDIA updates its website FAQ and Participant and Carers section
with a page titled ‘What should I do in an emergency/crisis?’ This page should include
information on contacting CRCCs, and the process the NDIA has for activating emergency
supports if they are not already in a plan.
Recommendation 3: The part of this page discussing NDIA emergency support processes
might read:
‘In an emergency/crisis situation, contact your provider to receive emergency supports. You
or your provider will then need to contact your planner to ask for a plan amendment. If you
discussed contingency supports with your planner in the planning process, you can use these
supports in an emergency/crisis situation.’
Recommendation 4: The NDIA should create a fact sheet about plan amendment in an
emergency/crisis and circulate this to all registered providers as well as displaying this fact
sheet on the website under the ‘provider’ section.
ii.
Emergency Supports Process 2 – Contingency Planning
Bruce Bonyhady spoke last year about the intention of the agency to start making provision in plans
where appropriate for co-ordination of emergency respite as a reasonable contingency support
when things go wrong for participants and their families. National Respite would welcome further
NDIA commitment to contingency planning. The option for contingency planning should be made
clear to participants, families, providers and planners.
Recommendation 5: The NDIA should promote contingency planning to participants and
families, providers and planners in addition to advance purchase of support co-ordination.
This allows chosen providers of support to provide emergency support at short notice.
Recommendation 6: The NDIA should ensure that any funded capacity building programs
and information sessions on the planning process discuss the planning process and asking
for contingency supports in a plan.
Recommendation 7: NDIA staff should communicate in provider meetings and other
mediums such as the website that the planning process can involve a contingency planning
component and that providers should let their clients know this as part of any planning
process assistance provided by a service provider.
Recommendation 8: The NDIA education and training process for planners should ensure
that planners know to ensure that contingency planning is discussed in the planning
meeting.
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ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
Recommendation 9: When a planner places contingency supports in the plan, the planner
should use the line items ‘coordination of supports or coordination of supports – higher
intensity’ in the plan to allow participants chosen providers to co-ordinate contingency
supports.
C. The role of Respite in Sustaining Relationships
Many providers and carers have told us that respite is an important preventative measure in
ensuring that families do not go into crisis or relinquish. We have already made a number of
recommendations to the NDIA on respite and the planning process,12 which we believe would assist
the planner to reconcile the tension between keeping the participant at the centre of the plan and
supporting the relationships around people with disability, a natural safeguard against
emergency/crisis situations.
Recommendation 10: Where high levels of informal support are identified by the planner,
the planner should be obligated to discuss contingency support planning and supports for
sustaining resilience of chosen families and carers, including through the provision of
respite.
Recommendation 11: The recommendations made by National Respite in our submission on
Operational Guideline – Supports for Sustaining Informal Support should be adopted to
resolve tension for the planner between focussing on the participant and their support
needs and the networks of support around them and what they might need to continue
providing that support. This would ensure that respite can appropriately be funded in a plan.
We recommended:

Elevation of sections of Supports for Sustaining Informal Support to higher level
guidelines

Adopting a family resilience approach when describing the purpose of supports
available under the Guideline

Clarifying what constitutes reasonable and necessary support under this Guideline –
helping the planner resolve tension inherent in the Act

Clarifying levels of respite support provided in the Guideline
D. Data Collection
It has been acknowledged by other peaks that the quality of data in the current service system is
poor and that one of the possibilities of NDIS, is an opportunity for more meaningful data collection
which puts people with disability and their carers first.13 The Agency has responded in part to this
12
National Respite, ‘Supports for Sustaining Informal Supports Submission,’ 2014.
http://nationalrespiteaustralia.com.au/wp-content/uploads/2014/08/NDIA-Submission-Supports-forSustaining-Informal-Support.pdf.
13
NDS and Carers Australia both discussed the issue of data collection in their ILC papers to DSS.
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ABN 68 985 026 718
Co-ordinating and Providing Emergency Support in NDIS National Respite Position
issue by discussing an outcomes framework which will measure the success of the NDIS for people
with disability and their carers. At the Carers Australia Conference 2014, Bruce Bonyhady outlined
the 7 outcomes in consideration for participants.14 One of these was ‘relationships.’
National Respite believes that it would be helpful to have a specific outcome on ‘quality of informal
relationships’ which would look at the sustainability of informal relationships as well as whether the
person has a network of informal support around them. This would help the NDIA to develop and
refine its policy approach to emergency co-ordination and support as well as its approach to respite.
Recommendation 12: The Agency should adopt an outcome for participants called ‘Quality
of informal relationships’ which measures the sustainability of informal relationships as well
as whether the participant has relationships. This would inform approach to emergency coordination and support.
Submission Contact:
Maureen Flynn
Membership and Policy Officer
National Respite Association
Ph: (02) 9789 1348
Email: maureen.flynn@nationalrespite.com.au
14
Bruce Bonyhady, ‘NDIA Chairman Bruce Bonyhady’s speech,’ Carers Australia Conference, 16-18 November
2014, pg. 7.
http://nationalrespiteaustralia.com.au/wpcontent/uploads/2014/11/bonyhady_speech_careers_confernce_nov14.pdf.
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