Children with
Disability- Rolling
out the NDIS in
the APY Lands.
:
Choice and Control
in the APY Lands
Artwork: Anne Jack, Ernabella SA
Health means respect for a way of life and culture.
This means listening to the Aboriginal people,
hearing their decisions, respecting their thought
and values and making services available in a form
appropriate to and determined by them.
Nathan and Japanangka, Central Australian Australian Aboriginal Congress, 1983
• NDIS trial site: children in South Australia
– 0-5 in 2013/2014
– 6-14 in 2014/2015
• NPYWC funded in initial year to work with
NDIA in APY Lands
– Inform people in community about the NDIS
– Provide recommendations about a framework to
support work with families and children
– Develop an approach to increasing range and level
of services available on Lands Artwork: Maringka Burton, Indulkana SA
• Workshop with senior women from NPY area
– Malpa
– Informing community
– Informing work
– Developing resources
Artwork: Margaret Smith, Imanpa, NT
• Discussions with families in communities
• Discussions with service providers
• Community stalls talking about the new
service
• Guidance from NPY directors and NDIA
People ask… “Where
do you come from?”
…And we know that
the white people
don’t understand.
…..From all directions
we are one family;
from all directions we
live in one country….
We are all of one
land, and all of us
have one law.
Mantatjara Wilson
Alice Springs 8 hrs
Alice Springs 5 hrs
500 km
Adelaide 1150 km
Population
approximately 3000
30
25
20
Artwork: Carlene Thompson Ernabella SA
15
10
5
0
0-14
15-24 25-34 35-44 45-54 55-64 65-74 75-84
85+
What matters to Anangu?
• Statistics
• Relationships
– With family
– With country
– With culture
Bonds between anangu and land can never be
Tjukurpa, Mutitjulu
broken while a person lives
Community in Minyma Tjuta
Tjunguringkula Kunpuringanyi
• Video Clip – Lisa’s Story
That is his country, his earth, his ground….In that land is
his spirit. Tjukurpa kurunytja. His home is on his country
and on his own land. That is because his kuuti – his spirit
resides in that land. He has to live on that land. Within
that spirit.
Mutitjulu woman in ‘They might have to Drag me Like a Bullock’
Anangu are more concerned about being
able to live in community, close to family,
than about receiving ‘quality’ services and
care- for themselves and their families
• It is important to recognise that the standard
of care which you or I might deem essential
for an elderly person may well conflict with
the priorities of an Aboriginal resident whose
number one issue is to be assured of a
peaceful life and death in their own country
no matter how physically difficult
•
Harrison in Doolan, quoted in ‘They might have to Drag me Like a Bullock’
• As workers, we are at risk of trying to impose
our values on anangu
– e.g. prioritising hygiene, cleanliness and routine
• May conflict with lifestyle choices when a
person is placed in institutional care
• How can the
National Disability
Insurance Scheme
take account of
this choice?
• What have we
learned from our
community
consultations?
• What are the
challenges of
providing services
and support to
people living on
the Lands?
Artwork: Margaret Smith, Imanpa, NT
Challenges
• Cultural
– Talking to families
•
•
•
•
Questions
Language
Gender issues
What is disability?
– Blame and shame
• parallel bars
– Carers- ‘extended’
families
• fluid…
– Mobility- need a
flexible response
Artwork: Margaret Smith, Imanpa, NT
• Cultural
• Planning and Goals
• Sharing and priorities
• Environmental
– Poverty
– Loss and trauma
•
Child removals
– Violence and
fear
– Limited literacy/
technology
•
Appropriateness
of forms
Challenges
Artwork: Valerie Foster, WA
• Logistics
–
–
–
–
–
–
–
Challenges
Limited service provider options
Relationship building
Diagnosis – who assesses/ catching the wary
Flexibility
Worker support
Infrastructure
Cost
Choice and Control
• How do we increase ‘choice
and control’ in this situation?
– Not a mainstream situation
with e.g.
• Provider choice
• Clients and families with defined
long and short term goals
• Sedentary lifestyles
• We look at moving forward
Artwork: Margaret Smith, Imanpa NT
In a culturally acceptable manner
To increase choice and control in the areas that
matter most to anangu
Working to develop goals relevant to anangu
– Different from mainstream
– Building relationships with clients and
developing an understanding of personal goals
rather than using a standard question/answer
format
Increasing choice and control in areas that
matter most to anangu, enabling
-living on country within family network
-fulfilling obligations (sorry business, sharing)
-participating in cultural activities
Possible ways forward
• Work through aboriginal organisations where
possible
– Consult and work with anangu
• At level of FPDN and locally – Directors, malpa,
community members
• Start slowly and allow results to speak for
themselves
– Give LAC (and planner) time to develop relationships
• Expand services currently working out there.
• Work with individual packages and generic
therapeutic services
– Eg working through schools for children where a
number have similar issues
Next steps for this project
• Planner to visit communities from time to timefirst visit last week
– Take discussions with families and develop initial
responses
• Finalisation of report and recommendations
– Work with NDIA to develop appropriate operational
detail
• Money, forms, processes….
• Presentation to NPYWC AGM
• Contributions and suggestions welcome
• Contacts:
NPYWC
Lee Ryall
Kim McRae
89582345
NDIA
Jo Wickes
Meryl Zweck
1800 800 110
Despite what may be perceived by services as disadvantages in
terms of environmental conditions and availability of services,
• We need to remember the priority for anangu
is to stay on the Lands
This is their choice,
– Living on country
this is control
– Living with family
anangu want over
– Living with culture
their lives
We need to
work in a way
that helps
people achieve
that choice