1

Supporting families with an

Aboriginal and Torres Strait Islander

child with disability: Health, education

and social service provider

perspectives

Presented byDr Anna Green

IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology Sydney (UTS)

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The AbLE ProjectAboriginal early intervention for Learning and physical disability in Early childhood development

Acknowledgements:

A/Prof Michelle DiGiacomo (UTS)

Mrs Patricia Delaney (UTS, formerly Aboriginal Medical Service Western Sydney)

Mr John Delaney (UTS, formerly Aboriginal Medical Service Western Sydney)

A/Prof Penelope Abbott (Western Sydney University)

Prof Patricia Davidson (UTS, Johns Hopkins University, Baltimore, Maryland, USA)

*Project funded by the Australian Research Council (LP120200484)

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Background

Disparity in Aboriginal and Torres Strait Islander childhood disability

- higher rates of hearing loss [1, 2], 2x as likely to have an intellectual disability [3], 1.3x as

likely to require assistance with self-care, mobility, or communication [4]

Impact on developmental and socio-economic outcomes

- negative impact on health, education, and employment outcomes [5, 6]

Service access

- early ‘intervention’ is vital [7, 8, 9, 10, 11], more cost effective [12, 13]

- barriers to service access impede early intervention

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Barriers to service access

- Lack of service programs and long waiting periods [14]

- Cost of transport, specialists [15, 14, 16, 17]

- Deficiencies in provider language, flexibility in appointments [14]

- Lack of cultural competence [15, 14, 16, 18]

- Confusion over available services [14, 17]

- Coordination and communication between services across the health, education and social

service sectors involved in service provision [15, 14, 16, 17, 18]

Aboriginal Community Controlled Health Organisations (ACCHOs)

- ACCHO model of care supports delivery of a wide range of health and well-being services,

rather than being tied to clinical specialties [19]

- Holistic family-centred approach facilitates managing complexity in consultations by

supporting the necessary resources and time [20]

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Methods

Community-driven partnership between an ACCHO, the University of Technology Sydney,

and Western Sydney University

Obtain insights from diverse stakeholders to better understand barriers and facilitators to

improved service access for families of Aboriginal children with a disability

Recruitment

- non-ACCHO health, education, and social service providers in Western Sydney

- parents or primary carers (hereafter ‘carers’) of Aboriginal children with a disability

aged 0-8. Children were patients at a developmental assessment clinic at an ACCHO

in Western Sydney

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Providers (n = 24)

Sector N

Health (HP) 12

Education (EP) 9

Social Services (SSP) 3

Organisation

Government 11

Non-Government 7

Private 6

Gender

Female 18

Male 6

Professions

Social service case managers

Early childhood education support workers

Disability support workers

Special educators

Speech therapists

Optometrists

Early intervention teachers

Aboriginal health managers

GPs

Nurses

Paediatricians

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Provider perspectives

Objectives of interviews with providers

1. Investigate the important components of collaboration

2. Better understand non-ACCHO provider perceptions, understandings, and experiences of

providing services

3. Explore the barriers and facilitators to service provision

4. Identify optimal approaches to developing interdisciplinary collaboration to support the

multidimensional needs of families

Semi-structured in-depth interviews, 24 participants (14 face-to-face, 10 phone),

June 2015 - July 2016

Findings related to 1) Service provision to children and families, and 2) Collaborating with other

providers

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Service provision to children and families: Interactions with families

‘They don’t want us’

“They don’t want you to tell them how to work with their children and how to manage their children

from my impression.” (EP)

“I think it’s so important for staff to have that understanding. Because, I have seen in the last five

years many case managers, withdraw from supporting families…because they feel that ‘we’re here

to offer, they don’t want any help, we can’t do anything’.” (SSP)

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Focus on supporting carers

“We needed support for the parents so that they could support the children to be ready for

school…we did a lot of other stuff first before we even got to school readiness for some families.”

(HP)

Awareness of acceptability issues

“It’s easy to think of it as a historical event that happened and we’ve moved on but it really wasn’t that

long ago…I can understand why they’re maybe reluctant to trust in a system that’s been imposed on

them.” (HP)

“I think one of the things that I would probably note, is that if there’s a key worker in the room, that the

family has bonded with or are comfortable with, have got some trust with.” (HP)

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Provider characteristics

“I think I had to just, change how I operated, because I was always the type of person to be punctual

– everything has to be done by the book, and then I understand that they don’t like me walking in

with so many books and papers; so I had to leave everything in the car and just go and have

conversations.” (SSP)

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Service provision to children and families: Service access

Acceptability issues

“Families often don’t see the value in their child having the label and I totally agree with them. Why

should you have to have a label on your child to get the services?...We shouldn’t be hounding the

families to get a label on their child.” (EP)

Information factors

“Even for me I’m thinking, oh, where do I go about particular things, there’s so many different

services…and if you’re [a carer] in a very stressful situation and trying to find a service and you’ve

rung five and they’ve all said ‘well not us, do you want to try them?’, I mean you’re going to give up.”

(HP)

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Short funding cycles

“When you can see families who, the parents are more confident, the children are able to sit in the

classroom and participate, and you don’t know what’s going to happen afterwards, because if

you’re someone who’s got support it’s good to be able to keep it going, when the support goes, can

you sustain it yourself if you’ve got so many other issues going on in your life?” (HP)

National Disability Insurance Scheme (NDIS)

“When you talk to our non-gov partners, their idea of complex we laugh because they really have

no idea of the type of clients that will be coming to them that in the past, as soon as it got too hard,

they’d refer back to [government department] and say, ‘too hard for us, not enough money attached

to that person, they’re not viable’.” (SSP)

Service provision to children and families: Policy and Funding

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Collaborating with other providers: Working together

Service landscape

“I went to a childcare centre last week and one of the educators that I was speaking to about a student

was a bit abrupt with me…she was a bit, ‘well, we've already had their speechie come in and told us to

do X, Y and Z’…unfortunately in that circumstance, that speechie isn't talking to me and I don't receive

any information of what they're doing…you're not necessarily always on the same page with other

agencies you’re working with.” (EP)

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Acceptability issues

“I was very fortunate in having a fantastic cultural mentor, an Aboriginal liaison person in [council], who

had a very natural, very good ability of coaching and mentoring adults, in regards to sharing very

simply but precisely, info about the Aboriginal culture and the differences and similarities and things

like that.” (EP)

“I met a lovely elder through the [Aboriginal childcare centre]. She came to me and said, ‘You can call

me aunty’ – and I thought she’s a person that you’d go ‘hey Aunty, how can I get some acceptance

around disability’… and through her I could have an insight.” (EP)

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Policy and funding factors

“Some services are going get away from me, I’m a big service, I can offer everything and I’m going

to eat up all these little services so there’ll be no competition.” (SSP)

“We’ve had programs over here where you get funding and by the way, you’ve got to start next

week, and that does not work, especially if you’re new…if you’re new you can’t just run in and go,

‘by the way, we’re starting next week’.” (HP)

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System factors

“Part of the information should be easily accessible, and something like, a person is on the housing

register we don’t know that, so how am I supposed to follow-up with Housing, when I don’t have that

information. So certain basic information like schooling, housing, health, whatever medical

appointments et cetera should be shared, that information should be transparent.” (SSP)

“We have a sort of regional gathering of all agencies concerned with early intervention…that’s sort of

what’s needed here…if they sat us down in one of these halls looking at like ‘these are our local

speechies, who are the wandering salesmen that are servicing this area?, have you got transition to

school covered?, great, well I won’t do it, you do it’.” (EP)

Collaborating with other providers: Communication

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Workforce factors

“[Case conferences] allow for all providers to sit down at the table together, and discuss the issues

that they see arising in the immediate situation. It often means that we hear each other’s thoughts

out loud rather than just, seeing them on paper.” (HP)

“I think the key strength is that each discipline is able to hear what the other is thinking and being

able to say, ‘that’s then going to conflict with what I was planning for the child’, or, ‘yes, let’s both do

that together’. So there’s a lot of collaboration, so that you’re not doubling up or wasting time redoing

things in different ways.” (HP)

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“I find in the West, the schools are very welcoming…if you say, ‘I’m a special educator that’s worked

with [child] in this setting, can I help to orientate him to this setting?’, they’re usually like, ‘yeah, come

on in’.” (EP)

Buy-in

“If the communication within the school wasn’t strong then it was difficult. If there was good

communication through the principle down to everybody else, they knew when we were coming and

what was going on.” (HP)

Interpersonal factors

“The head teacher has such antiquated ideas about people with intellectual disability and about her

role in trying to address some of their needs. There’s a demarcation line, that’s not education’s role.”

(SSP)

Collaborating with other providers: Schools as service settings

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Recommendations for policy and practice: Organisational Level

Reconceptualise service provision according to existing cultural strategies and strengths,

rather than assume interventions are cross-culturally transferable

Case conferences should be further developed and implemented to support the role of

families in service provision

Cross-sector networking groups required to continue to build effective cross cultural and

interprofessional collaborative practice

Change eligibility criteria for access to support, or match eligibility information to provider

recommendations, to implement continuity of care

Facilitate the development of pre-schools and schools as settings for early ‘intervention’

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Support ongoing cultural mentorship for non-Aboriginal providers

Implement case management through a dedicated key worker model. Aboriginal Health Workers

employed by ACCHOs are in a key position to step in to the key worker role for families

Develop the capacity of first-port-of-call providers through information and education to identify

families who have fallen through the treatment gap

Recommendations for policy and practice: Provider Level

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Publications

a) Green, A., Abbott, P., Davidson, P.M., Delaney, P., Patradoon-Ho, P., Delaney, J., & DiGiacomo, M (2018) Interacting with providers:

an intersectional exploration of the experiences of carers of Aboriginal children with a disability. Qualitative Health Research,

28(12): 1923-1932.

b) DiGiacomo M, Green A, Delaney P, Delaney J, Patradoon-Ho P, Davidson PM, Abbott P (2017) Experiences and needs of carers of

Aboriginal children with a disability: a qualitative study. BMC Family Practice 18:96.

c) Green A, Davidson PM, Luckett T, Abbott P, Delaney P, Delaney J & DiGiacomo M (2017) A framework for an asset-informed

approach to service-mapping. Nurse Researcher 25(3): 19-25.

d) Green A, Abbott P, Delaney P, Patradoon-Ho P, Delaney J, Davidson PM, DiGiacomo M (2016) Navigating the journey of Aboriginal

childhood disability: a qualitative study of carers’ interface with services. BMC Health Services Research, 16:680.

e) Green A, DiGiacomo M, Luckett T, Abbott P, Davidson PM, Delaney J & Delaney P (2014) Cross-sector collaborations in Aboriginal

and Torres Strait Islander childhood disability: a systematic integrative review and theory-based synthesis. International Journal for

Equity in Health 13(1):126.

Publications under review

f) Green A, Abbott P, Luckett T, Davidson PM, Delaney J, Delaney P, Gunaskera H, DiGiacomo M. Collaborating across sectors to

provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of

provider perspectives. Submitted to Journal of Interprofessional Care.

g) Green A, Abbott P, Luckett T, Davidson PM, Delaney J, Delaney P, Gunaskera H, DiGiacomo M. ‘It’s quite a complex trail for

families now’ - Provider understanding of access to services for Aboriginal children with a disability. Submitted to Journal of Child

Health Care.

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Thank you

For further information contact

Dr Anna Green

Post-doctoral Research Fellow, IMPACCT,

Faculty of Health, UTS

Anna.Green-1@uts.edu.au

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