Carers NSW Biennial Conference
22 May 2015
The National Disability Insurance Scheme (NDIS):
Where do carers stand?
This presentation
• The National Disability Insurance
Scheme (NDIS)
• Carers in the NDIS policy
framework
• Carer experiences in the NSW trial
• Recent developments
• Supporting carers in NSW
The NDIS
What is the NDIS?
• The new national system of disability support being
introduced in stages from 2013 to 2019
• More choice & control for people with disability & carers
• Includes:
o Community awareness and inclusion
o Information, linkages and capacity building (ILC)
o Individual funded packages for eligible people
• Based on needs – reasonable & necessary
• Not capped or means tested
• Lifelong support
The NDIS in NSW
Hunter trial site
• Newcastle: from Jul 2013
• Lake Macquarie: from Jul 2014
• Maitland: from Jul 2015
Nepean Blue Mountains
• Under 18s: from Jul 2015
• Others: Jul 2016
Rest of NSW
• From Jul 2016
• By Jul 2018
From 2018, the NSW Government will no longer fund or provide
any disability or community care services
Key questions
• How will carers be
affected?
• How can we support
carers?
Getting the answers
• Policy analysis
• Attending meetings and forums
• Contact with FACS, NDIA and other
stakeholders
• Case studies from carers and service
providers
• Carers NSW 2014 Carer Survey
NDIS issues paper
• The NDIS one year in:
Experiences of carers in the
Hunter trial site (Oct 2014)
• Summarises key learnings and
issues arising from the first year
of the NSW trial
• Contributes to knowledge being
used to continually improve the
NDIS
Key findings
• Recognition and inclusion of carers in the NDIS policy
framework is promising but limited
• Future of carer support as NSW transitions is uncertain
• Many carers are already having positive experiences
• Many carers are having difficulty understanding and
engaging with the NDIS
• Many carers are having difficulty supporting participants
to prepare and implement their plans
Carers in the NDIS policy framework
Carer recognition and inclusion
The NDIS policy framework recognises that:
• The role of carers in the lives of participants should be
acknowledged and respected
• Planners should consider whether the support carers
provide is reasonable and sustainable
• Where appropriate, a plan should build the capacity of
carers to provide support
But…
• Treatment of carers by planners has varied
• Some carers feel their perspective has not been properly
considered
• A separate conversation between the planner and the
carer is only a possibility, not a formal entitlement
• The optional ‘carer statement’ is not mentioned in the
operational guidelines, is not formalised in any way and is
not actively promoted to carers
Sylvia supports carers in the Hunter trial site. Some carers she
has spoken to have had positive experiences with planners,
but mostly their experiences have been negative, with some
families being told quite rudely that “it’s not about them”.
One carer Sylvia spoke to was thrilled with the amount of
financial support offered to her son, but was upset that
nobody asked her at any time how she was coping.
- Service provider case study (name changed)
Carer supports and services
Carers of NDIS participants may benefit from the participant’s
funded supports, BUT…
• The NDIS is not focussed on meeting carers’ needs
• Many people with disability and their carers will not even
be eligible for the NDIS
• All NSW Government funding and services relating to
disability (even carer support) will go into the NDIS
• Changes to national funding may affect the
support available to carers
Linda’s daughter Kellie is an NDIS participant. Kellie is fairly
happy with her supports, however Linda feels she has lost
out. She previously benefited from carer retreats, which
provided her with a real break from worrying about things at
home. However, this was block funded and is therefore no
longer an option. She says, “I don’t know how good or bad
[the NDIS] is, but I know I had more before. There’s a whole
heap of carers that, because they’re on the NDIS, are getting
nothing now. It’s as though they’ve wiped us.”
- Carer case study (names changed)
Carer experiences in the NSW trial
Positive experiences
• Improved quality, value and flexibility of disability support
received by NDIS participants
• Flow on benefits for carers, e.g. ability to return to work,
less stress, less financial pressure
• Some funded supports directly supporting the caring role,
e.g. domestic assistance, respite, family therapy
• Positive working relationships with NDIS planners
“The NDIS is allowing my son to receive invaluable support,
especially speech therapy, which we could not afford to
provide at the current level without the assistance of the
NDIA. The difference it is making to his abilities will have a
life-long impact on how he interacts with the world. It has
given us a renewed hope for his abilities to cope with adult
life, and will hopefully reduce the level of financial assistance
he will require as an adult.”
- Carers NSW 2014 Carer Survey respondent
Understanding the NDIS
Many carers have struggled to understand and embrace the
NDIS due to, for example:
• Limited and inconsistent information
• Unclear language
• Uncertainty about the rollout
• Inadequate communication with carers about what to
expect
Patricia cares for her son, Jeremy, who has high support
needs and currently receives individualised funding. She has
many questions about the NDIS: When will it roll out in her
area? Will her son’s level of funding stay the same? Will they
have to go through all the planning and paperwork again? She
has been unable to get solid answers, making her and her
partner unable to plan for the future and increasingly
anxious.
- Carer case study (names changed)
Supporting participants
• Not all carers have been able to access capacity building
opportunities
• Many carers have felt unprepared when they attend
planning sessions
• Many carers feel the NDIS has created more work for them
• Many carers find NDIS plans difficult to understand and
implement
“Huge difficulty engaging service providers - a 100 page
print out of all service providers (names, websites and
addresses but NO phone numbers) was given to us at the
plan approval meeting. As the carer I had to trawl
through the document…In relation to the family therapy,
we were told by the NDIA that although they had funded
it, no-one yet was providing it! Again it is up to me (the
carer) to chase this up. FRUSTRATING, and for me, more
WORK!!!”
- 2014 Carer Survey respondent
Recent developments
Policy framework
• Acceptance of the term ‘respite’
• References to an optional ‘carer statement’
• Carer specific outcomes to be included in NDIS outcomes
framework
• Work ongoing on national integrated carer support system
• Draft Information, Linkages and Capacity building
framework (ILC) – previously ‘tier 2’ – contains a number
items relating to carers
Information and resources
• NDIS Planning Workbook published
• More practical workshops for participants and their
families in NSW
• More transparent promotion of workshops
• ‘What’s new’ section on the website to show updated
information
• More documents published in community languages, Easy
English and Aboriginal versions
Consultation
• Joint Standing Committee hearings in trial sites
• Public consultations on assistive technology, ILC and
quality and safeguards
• Public survey of feedback on NDIS website
• Two NDIS webinars aimed at carers
• Carers Australia to run focus groups and develop supports
• Work on self-management resources
Carer experiences
Updated and new case studies indicate:
• A number of participants moving out of home, reducing
pressure on carers (especially older parents)
• Positive impacts on relationships – can be parents again
• Planners being more flexible and responsive to individual
needs of participants and carers
• Some participants and carers being able to engage more in
their community
Ongoing and emerging issues
Ongoing issues• Term respite still not incorporated into NDIS material
• No information on carer statement, not promoted
• ILC does not resolve support needs of ineligible families
• Website content still hard to navigate, too much jargon
• Information too internet-focused, alienates some carers
• Still a lot of misinformation across NSW, poor
communication from ADHC
• Rollout still unclear
Emerging issues - policy
• Eligibility of people with mental illness and their carers
• Inadequate transport funding affecting carers
• Inadequate affordable housing
• Intersection with health system
• Exclusion of people with significant cognitive impairments
and their carers
• End of case management as a service type
Emerging issues - implementation
• Consultations and webinars not meeting carers’ needs
• Appropriate services not available to spend funding
(respite, education, support coordination)
• Inadequate support and guidance for self-managers
• Difficulty accessing planners / lack of clarity re emergencies
• Limited engagement of Aboriginal and CALD families
• Staff turnover and lack of continuity with ADHC
privatisation
Recommendations
• Resolve potential funding gaps in NSW
• Finalise rollout, ILC and integrated carer support
• Improve and diversify information and communication
• Increase carer engagement and consultation
• Offer all carers a separate conversation with the planner
• Formalise and promote carer statement
• Improve capacity building, advocacy
Supporting carers in NSW
Carers NSW will continue:
• To draw attention to our findings and recommendations in
NSW and nationally
• To gather and communicate information about carers’
experiences in NSW
• To develop resources to help carers in NSW understand
and prepare for the NDIS
Carers NSW NDIS web page
www.carersnsw.org.au/NDIS
• The NDIS one year in: Experiences of carers in the Hunter
trial site
• Carers NSW NDIS Update – monthly e-newsletter
• Carers NSW fact sheets
• Links to non-Carers NSW information and resources
Carers NSW NDIS fact sheets
Five fact sheets are currently available online (printed copies
can be obtained from the Carer Line):
1. What is the NDIS?
2. Where do carers fit in the NDIS?
3. How can I prepare for the NDIS?
4. NDIS checklist for carers in NSW
5. Tips from carers on the NDIS
Coming soon…
• Three remaining fact sheets:
o Carer stories from the NDIS
o What if the person I care for is not eligible for the
NDIS?
o What if I have a problem with the NDIS?
• Getting ready for the NDIS: A workshop for carers, piloted
13 May 2015 in Western Sydney.