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 LandsArtwork: Maringka Burton, Indulkana SA

• Workshop with senior women from NPY area– Malpa– Informing community– Informing work– Developing resources

• Discussions with families in communities• Discussions with service providers• Community stalls talking about the new

service• Guidance from NPY directors and NDIA

Artwork: Margaret Smith, Imanpa, NT

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

500 km

Alice Springs 8 hrsAlice Springs 5 hrs

Adelaide 1150 km

Population

0-14 15-24 25-34 35-44 45-54 55-64 65-74 75-84 85+0

5

10

15

20

25

30

approximately 3000

Artwork: Carlene Thompson Ernabella SA

What matters to Anangu?• Statistics• Relationships– With family– With country– With culture

Tjukurpa, Mutitjulu Community in Minyma Tjuta Tjunguringkula Kunpuringanyi

Bonds between anangu and land can never be broken while a person lives

• Video Clip – Lisa’s Story

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

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’

• 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

• Environmental– Poverty– Loss and trauma• Child removals

– Violence and fear– Limited literacy/

technology• Appropriateness

of forms

Challenges• Cultural • Planning and Goals• Sharing and priorities

Artwork: Valerie Foster, WA

• Logistics– Limited service provider options– Relationship building– Diagnosis – who assesses/ catching the wary– Flexibility– Worker support– Infrastructure– Cost

Challenges

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 In a culturally acceptable mannerTo increase choice and control in the areas that matter most to anangu

Artwork: Margaret Smith, Imanpa NT

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 time- first

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 RyallKim McRae89582345

NDIAJo WickesMeryl Zweck1800 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– Living on country– Living with family – Living with culture

This is their choice, this is control

anangu want over their lives

We need to work in a way

that helps people achieve

that choice