02 Familycentredpracguide Foundation Guide 1012

8/14/2019 02 Familycentredpracguide Foundation Guide 1012

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Working with children, adolescents and young adults with a disability and their families

Family-centred, person-centredpracticeA guide for everyday practice andorganisational change


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Published by Disability Services Division

Victorian Government Department of Human Services

50 Lonsdale Street Melbourne Victoria Australia

une !0"!

# $opyri%ht State of Victoria& Department of Human Services and Department of 'ducation and

'arly $hildhood Development& !0"!(

)his publication is copyri%ht( *o part may be reproduced by any process e+cept in accordance ,iththe provisions of the Copyright Act 1968.

-S.* 978-0-7311-6!!-3/online version

Authorised and published by the Victorian Government50 Lonsdale Street& Melbourne

/0!"0!"!

-f you ,ould li1e to receive this publication in another format& please phone "200 223

42"& usin% the *ational elay Service "2 23 44 if re6uired(

)his document is available as a ,ord file and a PD7 file on the -nternet at,,,(dhs(vic(%ov(au
http://www.dhs.vic.gov.au/http://www.dhs.vic.gov.au/


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$ontents

Families and young people quoted.............................................................................................. 7

1 Introduction................................................................................................................................. 9About this %uide((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( )he suite of resources(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( An evolvin% approach((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( "0-snBt it


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'motional responsiveness((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 2Pull out .o+ 8 Personal perspective9 Daniela& oe& .en and Alle%ra((((((((((((((((((((((((((((((((((((((((((((((((((((((((2

Affirmin% the importance of family((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((2$ommunicatin% about medical and developmental issues (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 2.uildin% trust((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( F0

?hen resources donBt meet peopleBs needs((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F0Pull out .o+ 8 Personal perspective9 -n%rid& Dan& ustin& 'lla& ose and Lu1a(((((((((((((((((((((((((((((((((((((((((F"

-n%rid ,as& ho,ever& frustrated ,ith the level of support provided by other ,or1ers& and ,ith therelevance of the supports the family ,as offered( Ho, does a ne, parent 1no, ,hat they need&re%ardless of ,hether their child has a disabilityC IService providersJ canBt ,ait for us to say& K?e needthis -n the end - said& K-Bm not %ettin% ,hat - ,ant here& and it ,as the social ,or1er ,ho said&((( (( ((F"@n%oin% communication((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( F"

-nformation about service levels and provision(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F"eepin% families in the picture(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( F!espectin% youn% peopleBs privacy((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F!

' ractices t!at support c!oice and participation: decision ma&ing and action....................43ey messa%es(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( F2Self8determination& inclusion and choice((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F2Supportin% choice(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( FFAs1 and offer(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( FF$ollaborative %oal settin%((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( F5$hoice in the conte+t of limited resources((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F3$hildren and youn% peopleBs role in decision ma1in%((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F3

Supportin% children and youn% peopleBs input((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F4Pull out .o+ 8 Personal perspective9 Anthea((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((F4

-tBs also important that carers stay out of family mattersB& Anthea says( @ne carer recently& ,hen -used to say& K@h MumBs been annoyin% me for this reason& sheBd say& KNeah& -Bve seen your mum doblah blah( -tBs li1e& - have a ri%ht to say that& and you can a%ree to a certain point& but donBt %et yourbac1 up& donBt %et too involved( -tBs buttin% in& cos itBs not your family& itBs mine( And you need torespect that


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Supportin% siblin%s((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 3!Lin1in% people into community(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((32)ailorin% supports to peopleBs capacity(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((35

espondin% to chan%e((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 35Pull out bo+ 8 Personal perspective9 Anita& Peter& Michael& yan and $laire(((((((((((((((((((((((((((((((((((((((((((33

) *ec!nical quality.......................................................................................................................'7ey messa%es(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 347amily8centred practices as core professional s1ills((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((34Esin% family8centred tools and methodolo%ies ((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((3?or1in% to,ards service inte%ration((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((3eferrin% and usin% secondary consultation((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((40Pull out .o+ 8 Personal perspective9 an& Sean& Lachlan and Louise((((((((((((((((((((((((((((((((((((((((((((((((((((((40Self8care and maintainin% appropriate boundaries((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 4"

9 Family-centred organisations..................................................................................................72ey messa%es(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 4!)he barriers to chan%e((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 42A frame,or1 for action((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 42Supportin% staff to be family centred (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((4F

Professional development and orientation((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((4F

Supervision (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 4Feflective practice& team8based approaches and usin% ,ritten materials((((((((((((((((((((((((((((((((((((((((((45Service development(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 45Mana%ement practices (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 43Systems& policies and procedures((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((43

7amily participation in or%anisations (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((43A family8centred service system (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 44$reatin% more family8centred professions((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((47amily8centred or%anisations as learnin% or%anisations((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((4

1+ ,aintaining and impro#ing practice......................................................................................79ey messa%es(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 4Monitorin% and see1in% feedbac1((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 0

eflective practice(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( 0Esin% this suite of %uides((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( "*e+t steps(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((( "

ndnotes.......................................................................................................................................)3


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Families and young people %uoted

)han1 you to the families and youn% people ,ith a disability ,ho %enerously shared their stories and ideas

for these %uides( Here ,e list those people to ac1no,led%e them& and to convey a sense of the diversity of

those ,ho too1 part( *ames and identifyin% details have been chan%ed to protect anonymity(

Alison& mother of Mar1 /,ho has a %enetic syndrome resultin% in a mild physical and intellectual

disability

Amina& a parent from a support %roup for families from a Middle 'astern community

Amy and $olin& parents of 'mily /,ho has comple+ medical needs& her older brother& Anthony&

and her youn%er sister& Lisa

Anita and Peter& parents of Michael /,ho has Do,n syndrome& his youn%er brother& yan&

and his sister& $laire

Anthea& an advocate and a youn% person ,ith a disability

.etty& a parent from a support %roup for families from a *orth Asian community

$aitlin& a youn% person ,ith a disability

$ass& mother of Abel /,ho has autism spectrum disorder and epilepsy and is visually impaired& his

youn%er sister& ulie& and youn%er brother& ac1 /,ho has a learnin% delay

$athy and ichard& parents of $ameron /,ho has Asper%erBs syndrome& An%ela /,ho has an

intellectual disability and issues ,ith mobility& hearin% and si%ht and *atasha

Daniela and oe& parents of .en /,ho has autism spectrum disorder and his youn%er sister& Alle%ra

Deborah and Saul& parents of uth /,ho has Do,n syndrome& and her siblin%s& Aaron& Leah and*ate

Donna& mother of $asey /,ho had an intellectual disability and comple+ medical needs and passed

a,ay a%ed "0 and her older brother& .en

7atima& a parent from a support %roup for families from a Middle 'astern community

-n%rid and Dan& parents of 'lla /,ho has Do,n syndrome& her older brother& ustin& youn%er sister&

ose& and youn%er brother& Lu1a

an and Sean& parents of Louise /,ho has a mild intellectual disability and her youn%er brother&

Lachlan

ulia& a parent from a support %roup for families from a *orth Asian community

ate and Gre%& parents of amie /,ho has a pervasive developmental disorder and his youn%er

siblin%s& Melanie and $allum /,ho both have Asper%erBs syndrome

Lilly& a parent from a support %roup for families from a South8'ast Asian community

May& a parent from a support %roup for families from a *orth Asian community

Melissa and oland& parents of Michelle /,ho has Do,n syndrome and her youn%er brothers& Stefan

and )ad

Miriam& a parent from a support %roup for families from a Middle 'astern community

*atasha& a parent from a support %roup for families from a Middle 'astern community


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Paula and David& parents of Samuel /,ho has an intellectual and physical disability and several other

children

Sue& mother of *ic1y /,ho had atypical ett syndrome and passed a,ay a%ed "= Sue is also the

principal of a special school


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1 &ntroduction

About this %uide

)his %uide aims to support people ,ho ,or1 ,ith children& adolescents and youn% adults ,ith a disability or

developmental delayto ,or1 in more family8centred ,ays( -t is for educators& respite ,or1ers& allied health

practitioners& early childhood intervention professionals& case mana%ers and the myriad other professionals

involved in the lives of children and youn% people and their families(

7amily8centred approaches ,ill already inform the ,or1 of many readers in different ,ays( )his %uide see1s

to stri1e a balance bet,een orientin% less e+perienced professionals to the approach and supportin% their

more e+perienced collea%ues to reflect on and improve this aspect of their ,or1(

A fundamental premise of the %uide is that there is al,ays more that any professional can do to stren%then

and deepen their family8centred practice( )his is bac1ed up by research demonstratin% that a %ap can arise

bet,een ho, family8centred professionals thin1 their practice is and the e+perience of those they ,or1

,ith="&!and that even professionals dedicated to family8centred practices can find them difficult to sustain

fully over time(2Leadin% family8centred practice researcher $arl Dunst& dra,in% on feedbac1 from serviceusers over many years& su%%ests that many professionals e+cel in ,hat he calls the relationalB elements of

family8centred practice but find it challen%in% to maintain its participatoryB elements : those that support

family choice and participation& and potentially impact on the nature of services themselves(F

-n consultations for this %uide& many families& youn% people and professionals described e+amples of

e+cellent practice( Many also described instances ,hen families or youn% people felt let do,n& frustrated or

not respected& heard or understood( )hese stories hi%hli%ht the need for professionals& or%anisations and the

system as a ,hole to be more family centred( Most children& youn% people and families are involved ,ith a

constellation of services( -mproved communication& coordination and inte%ration bet,een them ma1e it more

li1ely that a familyBs needs& preferences and priorities ,ill shape the supports they receive(

)his %uide dra,s on the literature& the practice ,isdom of many s1illed Victorian professionals& and the vie,sand e+periences of diverse families and youn% people ,ith a disability( )he stories and voices of families and

youn% people ,ith a disability and practice e+amples from professionals feature e+tensively throu%hout&

providin% evidence& inspiration and many concrete ideas for %ood practice(

)he %uide be%ins ,ith a discussion of some foundational concepts related to family8centred practice&

includin% ,hat the literature says and ,hat the approach offers to ,or1in% ,ith adolescents and adults ,ith a

disability( An outline then follo,s of the practice model on ,hich the %uide is based( )he follo,in% five

chapters e+plore various aspects of the model and their implications for practice( )he %uide ends ,ith

discussion about ho, or%anisations can be more family centred& and ho, reflective practice and re%ular

feedbac1 from service users can contribute to maintainin% and improvin% practice(

)he suite of resources

)his is the foundation document in a suite of seven family8centred practice %uides( -t provides the conte+t&

conceptual frame,or1 and evidence for the approach& e+plores issues relevant to translatin% theory into

everyday practice and or%anisational chan%e& and offers many practical su%%estions( 7ive of the shorter

%uides provide more tips and ideas for practice in specific settin%s9

amily!centred, child!focused support in the early childhood years" a guide for early childhood

inter#ention ser#ice professionals

amily!centred, person!centred planning" a guidefor professionals in intake, planning and case

management roles

OAll subse6uent references ,ill be to people ,ith a disabilityB only for ease of readin%(


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amily!centred, person!centred allied health" a guide for practitioners in pri#ate practice, schools and

clinical settings

amily!centred, person!centred support9 a guide for disability support workers

Working with students with a disability and their families9 a guide for school staff with student support

roles.

)he si+th shorter %uide is amily!centred, person!centred organisations" a guide for managers andgo#ernance bodies to support whole!of!organisation approaches to family!centred practice ( -t provides

support for mana%ement and boards to implement ,hole8of8or%anisation approaches to stren%thenin% family8

centred practice(

An evolvin% approach

)he ori%ins of family8centred practice as a term are in early childhood intervention /'$-( .ut family8centred

practice as a philosophy arose from the consumer movement& ,hich also drove the development of person8

centred practice( As this '$- service mana%er ac1no,led%ed9

?e li1e to claim family8centred practice no,& ,ith the literature and the research( ?hat ,e have to

remember is that it ,as consumer driven( -t ,as parents refusin% to put their children in institutions

that made the chan%e(

Althou%h family8centred practice has informed ,or1 in some sectors for years& it remains a ,or1 in pro%ress&

both as a field of research and a ,ay of ,or1in% ,ith children& youn% people and families( Good practice and

better understandin% of the more comple+ and challen%in% aspects of family8centred practice ,ill continue to

%ro, as individuals and or%anisations in every sector reflect on and ad


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)hese competencies inform this and the '$- %uide( )he %ictorian early years learning and de#elopment

framework/V'LD73and its associated practice principles also inform the %uides and provide a conte+t for

early years educators and '$- professionals(

Services for children and youn% people ,ith a disability over the a%e of si+ /that is& post8'$- have also

under%one a si%nificant paradi%m shift& ,ith moves to,ards self8directed support and individualised fundin%(

)he &ational disability strategyhi%hli%hts %ro,in% Australian and international support for person8centred

and self8directedB supports4that ma+imise choice($hoice is a 1ey Victorian Government principle

underpinnin% these %uides /see bo+ and is supported by both family8centred and person8centred practice(

Person8centred practice is a critical element of disability services& yet the reality is that many adults ,ith a

disability live ,ith or rely on continuin% support from family /althou%h ,ho those people are mi%ht chan%e(

As children %ro, to adolescence and adulthood& professionals ,or1in% ,ith them need to dra, on both

family8centred andperson8centred approaches( Le%islative and policy frame,or1s also support the related

principle of inclusion()his reco%nises that the choices available to people ,ith a disability and their families

,ill al,ays be limited unless %overnment& service providers and the community ,or1 to%ether to address

barriers that prevent their full inclusion and participation in every aspect of community life(

7or educators and allied health practitioners ,or1in% in schools ,ith older children and youn% adults& a

number of policy documents& standards and resources /listed in the relevant %uides provide support andconte+t for family8centred approaches( -n %eneral& family8centred practice in these settin%s reflects a shift

,ithin schoolsB perception of students from bein% passive recipients to active participants in their education( -t

also reflects the ,idenin% of the familyBs role from ensurin% their child %ets throu%h the school %ate to active

partnership in the childBs learnin% and development(

)hese %uides are also informed by the principles of the Victorian GovernmentBs Cultural and linguistic

di#ersity strategy relatin% to e6uality& di%nity and self8determination& valuin% diversity and non8discrimination&

as ,ell as those in $nabling choice for Aboriginal people li#ing with disability& relatin% to improvin% access&

promotin% least intrusive early intervention& supportin% participation& and buildin% cultural competence

throu%h partnership ,ith Abori%inal or%anisations and communities(

7amily8centred practice has the potential to unite 1ey aspects of all these policy directions and philosophicalstrands in a coherent model of practice and an adaptable set of values& s1ills& behaviours and 1no,led%e

that can stren%then the ,or1 of professionals in each sector addressed in these %uides(

Pull out .o+ 8 Principles

$hildren and young people #ith a disa'ility or developmental delay and their families are 'est placed to "no#

#hat mi( of services and supports are li"ely to meet their needs) *ervices should 'e 'ased on the priorities of

children and young people and their families, responding to the particular stage of the child or young

person+s development)

A child- and family-centred approach 'ased on a partnership 'et#een parents and professionals should

ma(imise the choices and opportunities availa'le to children and young people #ith a disa'ility ordevelopmental delay and their families)

*ervices provided to children, adolescents and young adults #ith a disa'ility or developmental delay and

their families should 'e guided 'y the follo#ing principles

he 'est interests of children and young people are paramount)

*ervices and supports protect and promote human rights, including the rights of the child and young

person #ith a disa'ility or developmental delay)

*ervices and supports adopt a child- and family-centred approach that promotes choice and

opportunity)

*ervices and supports are accessi'le and coordinated to intervene early and adopt a life-cycle

approach to the planning and provision of services)


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*ervices and supports are integrated to meet the holistic needs of children and young people #ith a

disa'ility or developmental delay and their families)

*ervices and supports promote social inclusion)

*ervices and supports are accessi'le and appropriate for children and young people from diverse

cultures and their families)


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! Foundations

ey messa%es

7amily8centred practice is underpinned by 1ey values about children& youn% people and families& includin%

that children and youn% people are a%ents in their o,n life& and that families have si%nificant e+pertise in

relation to their childrenBs lives& and have the ri%ht to see1 the best possible services and supports for them(

7amily8centred practices have been ,idely adopted in Australia and else,here in the past decade( )here is

no, stron% evidence for the approach& includin% that it improves child behaviour and ,ellbein%& family

functionin%& levels of social support available to families and family satisfaction ,ith services& and that it

contributes to these primarily by increasin% parental self8efficacy( )he approach is also supported in school

settin%s by evidence of the benefits of family:school partnerships for all students(

Professionals need to combine family8centred and person8centred approaches& especially in ,or1 ,ith youn%

people( )his means respectin% their choices andsupportin% the relationships that are important to their lon%8

term ,ellbein%( -t also includes respondin% to family membersB concerns and 1no,led%e about their child and

offerin% information that mi%ht add to their understandin% of their childBs needs or options in the future(

$ulturally responsive practice is deeply lin1ed ,ith family8centred practice because culture profoundly

shapes human development and family structures( -t as1s that professionals address discrimination and

ensure that culture informs all aspects of service provision( 7amily8centred practice can help services

improve their relevance to diverse communities in the catchment because family is central to the lives of

people in Abori%inal and many culturally and lin%uistically diverse /$ALD communities( )he basic

approaches to culturally responsive practice ,ith Abori%inal and $ALD families are similar& but the practices

and 1ey issues are very different(

Definin% family8centred practice7amily8centred practice is a set of values& s1ills& behaviours and 1no,led%e that reco%nises the centrality of

families in the lives of children and youn% people( -t is %rounded in respect for the uni6ueness of every

person and family& and a commitment to partnerin% ,ith families and communities to support children and

youn% people ,ith a delay or disability to learn& %ro, and thrive( -t puts family life : and the stren%ths& needs

and choices of people ,ith a disability and their families : at the centre of service plannin%& development&

implementation and evaluation(

7amily8centred practice is not an end it itself& rather it enables professionals to do ,hat they do more

effectively( -t is no less important because of that( 'vidence sho,s that the ,ay supports are provided has

an impact on families& as ,ell as the supports themselves("0

)he centrality of family lifeB is crucial( -t %oesbeyond the child or youn% person and their family( -t is them andeverythin% that ma1es up their ,orld9 their

relationships& resources and daily lives= their culture& community and lan%ua%e= their stresses& needs and

tensions= their preferences& interests and priorities= and their %oals& hopes and aspirations(

Enderpinnin% beliefs and values

)he s1ills and behaviours that family8centred practice re6uires are underpinned by certain beliefs and values&

includin% that children& adolescents and youn% adults ,ith a disability9

are a%ents in their o,n life& and have their o,n stren%ths and assets

do best %ro,in% up in family settin%s& in safety& and ,ith stable relationships& consistent support and

opportunities for continuin% connections ,ith their parents& broader family and culture into adulthood


14/89

are entitled to the support and opportunities they need to achieve their full potential= to create

connections& ma1e contributions and feel a sense of belon%in% to their family& community and culture=

and to participate in the social& economic& cultural& political and spiritual life of society

have the ri%ht& as adults& to ma1e and act on their o,n choices& or to contribute to decision ma1in%

accordin% to their capacity& and are entitled& as they %ro, to,ards adulthood& to support that helps them

develop the s1ills and confidence to do so(

7amily8centred practice is also %rounded in the belief that9

human development is best understood as an interaction bet,een the person as an active individual and

their environment : that is& all the interactions and relationships that ma1e up their ,orld& "",hich for

children and youn% people primarily means their family

every family is uni6ue& ,ith its o,n stren%ths and assets& and is made up of those people ,ho consider

themselves family& ,hether or not they live to%ether or are related by blood or marria%e

families have si%nificant e+pertise in relation to their childrenBs lives= are central to providin% an

environment in ,hich their children %ro,& learn and thrive= and are best placed to advocate for and

support them

families care deeply about their childrenBs development and ,ellbein%& and ,ith the ri%ht support& most

,ho are stru%%lin% can successfully adapt to the chan%es that their childBs developmental delay&

disability or medical issue brin%s to their lives& and provide a safe& carin% and stimulatin% environment

families have the ri%ht to see1 the best possible services and supports for their child& and to not be


15/89

inclusion are 1ey practices ,ithin Victorian early childhood education settin%s& "3,hile family:school

partnership is increasin%ly informin% approaches ,ithin Australian schools("4

-n recent years even stron%er evidence has be%un to emer%e about the efficacy and effects of family8centred

practice in various settin%s( A !005 Australian literature revie, found that family8centred practice produces

positive parent and family benefits beyond those produced by structural intervention factors /such as the

form and fre6uency of services provided and non8intervention factors /such as employment& housin% and

health careB("

-n !004 a synthesis of F4 studies investi%atin% the effects of family8centred practices reported9

increased family satisfaction ,ith the helpfulness of services

increased parental self8efficacy /see pa%e 50

increased levels of social support

improved child behaviour and ,ellbein%

improved family functionin%("

-n !00 another Australian literature revie, concluded that theoretical evidence for the approach is stron%

but that the relationship bet,een the provision of family8centred services and the achievement of positive

outcomes for children and their parents is comple+ and is yet to be fully understoodB(!0Si%nificant pro%ress

,as made to,ards this in !0"0& ,ith a further synthesis of 5! studies concludin% that9 family8centred

approaches had both direct and indirect effects on parent& family and child behaviour and functionin%=

indirect effects ,ere the stron%est= and these occurred throu%h stren%thened parental self8efficacy( )hat is&

parental ,ellbein% and belief in their abilities /such as to problem8solve and %et the resources their family

needs influenced parent:child interactions& ,hich in turn had a positive effect on child development( !"

A !0"0 revie, of the evidence for family8centred practice in early childhood education settin%s concluded

that family8centred practice9

promotes parental involvement in education& ,hich is associated ,ith improved learnin% outcomes

promotes continuity of care and more secure attachments for children

enables professionals to develop responsive learnin% pro%rams that build on childrenBs prior learnin%

e+periences(!!

esearch in educational settin%s beyond the early years also supports %reater partnership bet,een schools

and families& su%%estin% these are achieved ,hen9

early childhood services and schools en%a%e ,ith all families

families have a say in and can directly contribute to pro%rams& such as e+tracurricular activities

there is a shared understandin% of the importance of academic and personal development bet,een

families& early childhood services and schools(!2

7urther research demonstrates si%nificant impacts for students of all a%es& includin%9

better learnin% and development outcomes in the early years and at school

increased en%a%ement in learnin% and development

smoother transition to and from school

hi%her retention rates

increased confidence& social s1ills& emotional resilience& communication s1ills& classroom behaviour and

%eneral ,ellbein%

reduction in the effects of disadvanta%e amon% children from lo, socioeconomic bac1%rounds( !F


16/89

?ho is familyBC

7amily8centred practice re6uires that services reco%nise the diversity of Australian families& and ,ho family is

to the child& adolescent or youn% adult ,ith a disability( 7or youn% children& family is ,hoever the adults

closest to them /usually& but not al,ays& their parents at birth say it is( -n adolescence& this can become

more fluid& and by early adulthood& familyB includes anyone a youn% person identifies as such& includin%

perhaps a partner& trusted care%iver or close friend(

@ften ,ho ,e e+pect family to be is not the reality( )here are people ,ho become terribly important to

the mana%ementB of disability that you ,ouldnBt e+pect : a nei%hbour& or ,hoever( ?ithin an hour of my

dau%hter dyin% at a%e "& her ta+i driver ,as at my door& distrau%ht( HeBd 1no,n her for "! months& the

,hole of her post8school time( He pic1ed her up every mornin% and delivered her home in the evenin%(

Anybody else ,ho ,anted a boo1in% at that time could %o


17/89

7amily andperson centred

Professionals need to combine family8centred and person8centred approaches& especially ,ith older

children& adolescents and youn% adults( Person8centred and self8directed approaches increasin%ly inform

disability service provision ,ithin Australia and internationally( !4)he &ational disability strategyreco%nises

that IpJeople ,ith disability have lived e+perience of disability and must play a central role in shapin% and

implementin% policies& pro%rams and services that affect themB& and provides direction for IaJ sustainabledisability support system ,hich is person centred and self directed& ma+imisin% opportunities for

independence and participation in the economic& social and cultural life of the communityB( !

or&ing /it! c!ildren and adolescents

As mentioned& the term family8centred practiceB ori%inated in '$-& ,hich ,or1s ,ith children from birth to si+

years( -n that conte+t& it is lar%ely about respondin% to a familyBs ,ishes& e+cept ,here they conflict ,ith a

childBs best interests( )he child is the reason for a serviceBs involvement& ho,ever& and remains at the centre

of the professionalBs relationship ,ith the family( )herefore the intersection of family8 and person8centred

approaches in an '$- conte+t is best characterised as family centred& child focusedB(

Net almost all children& as they mature& ,ant an increasin% say in decisions that affect them& a ri%htreco%nised by the Enited *ations $onvention on the i%hts of the $hild.!Professionals can support even

youn% childrenBs input into decisions by reco%nisin% and respondin% to indications of their preferences(

$hildren and youn% people ,ho are non8verbal communicate these in many ,ays& includin% throu%h sound&

posture& e+pression& %a>e and the use of communication aides(

Many parents and care%ivers ,or1 hard to support their childrenBs %ro,in% independence& to ma+imise their

decision8ma1in% capacity and to ensure their preferences& %oals and ambitions inform services and supports(

Anita /see pa%e 3 has used her son MichaelBs supports in different ,ays as he has matured& to %ive him

choices& foster his independence and support him to achieve his %oals( AntheaBs mother& after years of

nurturin% her dau%hterBs s1ills and confidence& ,or1s in tandemB ,ith Anthea /no, " to support her to

direct her o,n services( Paula /see pa%e " says of her no, !!8year8old son9

Samuel is totally reliant on other people& so ,eBve done our best to support him to be as self8assertive as

possible( He does have speech& and he loves to tell people about ,hat his ri%hts are( -f someone says&

*o&B heBll tell them& -t is my ri%ht to do : B ,hatever it mi%ht be( ?eBre very proud of him(

@ther families mi%ht be less 1een to prioritise their childBs input into decision ma1in%& perhaps due to their

family or cultural values& because they are not optimistic about their child %ainin% the necessary s1ills& or if

their vie,s differ si%nificantly from their childBs( -n a ,orld ,here adults often ma1e the decisions& it can be

difficult for any child or youn% person to have their choices heard and respected consistently( -t can be even

harder for those ,ith a disability9

Generally the people ,ho are in po,er are people ,ithout disabilities @ften itBs too easy for the person

,ith a disability not to be listened to( Esually itBs the parents ,ho complain( )he youn% person is the least

li1ely to be vocal but the most li1ely to be affected by the decisions that are made( So you need to ma1e

a lot of effort to not i%nore the person ,ho has %ot the most at sta1e( : Geor%e )aleporos& Nouth

Disability Advocacy Service $oordinator

Professionals need to respect and respond to family membersB vie,s& concerns and 1no,led%e of their child(

Net sometimes it ,ill also be appropriate to offer information that mi%ht add to the familyBs understandin% of

their childBs needs or options& especially as the child %ro,s to,ards adulthood& includin% perhaps addressin%

the familyBs fears about their childBs future( -t can often be valuable to offer families an opportunity to learn

from others facin% the same challen%es(

.oth person8centred and family8centred approaches can deepen everyoneBs 1no,led%e of the person ,ith a

disability& and lead plannin% and other ,or1 in une+pected and fruitful directions( As one mother said9


18/89

- thou%ht - 1ne, my son so ,ell until ,e started plannin% ,ith ohn( )his chan%ed our ,hole ,ay of

thin1in% about ,hat ohn ,as capable of doin% no, and in his future( 20

Pull out .o+ 8 Personal perspective9 Paula& David& Samuel and family

Paula and David have an adult son& Samuel /,ho has a physical and intellectual disability& and several otherchildren( Samuel had a really dedicated team of therapists in both primary and secondary school&B Paula says(

)hey 1ne, it ,ould be really important to train his ne, team of support ,or1ers so that he ,ould be assistedproperly and& at the same time& encoura%ed to do ,hat he could for himself(B

)he family also appreciated the fle+ibility of SamuelBs therapists( )hey ,ouldnBt say& KNour ne+t appointment ,illbe and loo1 in their diary( )hey ,ould say& K?hat are you doin%C ?hen and ,here can ,e see you that bestsuits youC ?hen the 1ids ,ere little ,eBd have to be in four places at once( So theyBd fit in therapy ,ith us( @rtheyBd use their 1no,led%e and resources to find e6uipment for us to trial : ,hich is really time consumin% : andsometimes theyBd even deliver it to our doorstep(B

As Samuel matured& Paula e+pected professionals to consult directly ,ith him( *ot the hi%h8level ne%otiatin%&B shesays& but ,hat he ,ants to do& or ,ho he ,ants to mi+ ,ith( - modelled ,hat - ,ould e+pect ?eBve al,aysencoura%ed him to as1 6uestions( -t blo,s me a,ay ho, he ma1es people accountable( -f they have aconversation that doesnBt include him& heBll say& K?hatBs an -SPC or K?hen are ,e %oin% to do thatC(B Paula andDavid continue to advocate both for and ,ith Samuel& supportin% him to develop an increasin% capacity tochallen%e systems and people himselfB(

or&ing /it! young adults

Enless under %uardianship order& from the a%e of " youn% people are entitled to ma1e their o,n decisions(

All youn% people need support to develop the s1ills and confidence to ma1e %ood choices& or to contribute to

decision ma1in% accordin% to their capacity( 7or those ,ith a disability& this should include the freedom to

learn by trial and error& li1e any other youn% person( -n this conte+t& itBs important that professionals respect

youn% peopleBs privacy and confidentiality& e+cept if a duty of care issue arises(

Many youn% people /especially if their disability is primarily physical can become completely independent in

advocatin% for themselves( @thers ,ill al,ays re6uire some assistance to identify their needs and perhaps

ma1e some types of decisions( @ver time& this mi%ht come from their family of ori%in& from others ,ho

become family to them& from advocates or from other services(

Sometimes youn% people ma1e choices that clash ,ith the preferences of family members( -t can be difficult

to determine ,hat family8centred practice means in this conte+t( )he reality is that a lot of youn% people ,ith

a disability rely on their family of ori%in into adulthood( 7or many& these are their most lastin% and supportive

relationships( As $aitlin says /see bo+ belo,& service providers should strive for a balanceB9 bein% mindful of

everyoneBs needs& the a%e of the person& and ho, each decision impacts on everyone involved(

?hen such issues arise& they often relate to autonomy& independence& identity& ris1 ta1in% and se+uality(

-ssues to do ,ith se+uality mi%ht include a youn% person ,antin% to have se+& enter a relationship& move in

,ith a partner or e+plore their se+uality& includin% ,hether they are /li1e (3 per cent of men and "5(" per

cent of ,omen in Australia2" same8se+ attracted(

Professionals need to respect youn% adultsB choices andsupport the relationships that are vital to their lon%8term ,ellbein%( )he latter includes ensurin% %ood communication ,ith family& coordinatin% ,ith the youn%

personBs natural supportsB /in their family of ori%in and beyond and understandin% the role of family and

community in the youn% personBs life( 7amily and community can be especially important to the identity of

youn% people ,hose culture puts stron% emphasis on relationship and family(

)hose ,or1in% ,ith youn% adults ,ith a disability need to hear and value family membersB concerns and

1no,led%e of their child( -t is often important& too& that they find ,ays respectfully to e+tend family membersB

sense of ,hat mi%ht be possible /and even necessary for their child in the future( )his mi%ht include& for

e+ample& information about services available to support independent livin%&2!or assistance ,ith transitionin%

from school8based to adult disability services( $reative& inclusive plannin% approaches& incorporatin%

net,or1s of support beyond immediate family& can help(22Professionals also need to validate the on%oin%

role of family members& and ac1no,led%e that it isnBt al,ays easy to step a,ayB9


19/89

-t helps if the parents are confident that their youn% person is havin% %ood outcomes& and that the service

system is respondin% to their needs( I.ut ifJ a service is failin% them& theyBre not %oin% to let %o of control(

-tBs their instinct to ma1e sure that their child is supported( )he system isnBt very %ood at lettin% parents

step a,ay because thereBs so much dependence on unpaid& informal support IandJ ,hen theyBre

providin% a lot of the care needs& it doesnBt feel very natural to s,itch off( : Geor%e )aleporos& Nouth

Disability Advocacy Service

Person8centred and family8centred approaches can loo1 very different in practice& but philosophically they

are both %rounded in the ri%ht to self8determination and appropriate support( ?hat happens if they come into

tension depends on many factors& includin% the youn% personBs a%e and capacity& the decision in 6uestion

and its impacts on everyone involved& and the professionalBs role and relationship ,ith all parties(

Pull out .o+ 8 Personal perspective9 $aitlin

$aitlin /a youn% ,oman ,ith a disability is in t,o mindsB about family8centred approaches( @n the one hand - cansee itBs very important& that havin% one person ,ith a disability can impact on the ,hole family( .ut - 1no, frompersonal e+perience that it can be detrimental& ,hen my parentsB opinions ,ere %iven more ,ei%ht than mine(B

An e+ample for $aitlin is ,hen her school and family pressured her to do Near "! over t,o years( She thou%ht shecould do it in one& and felt stron%ly about %raduatin% ,ith her friends( She stood her %round& ,ith support from the

school counsellor& and did Near "! the ,ay she ,anted( Nou hope that as you mature& IprofessionalsJ ,ill listen to,hat you,ant more&B $aitlin says( - %uess itBs about establishin% a balance& and bein% mindful of the needs ofeach person ,ithin the family( .ut also considerin% ho, much the decision impacts on each person( )he Near "!decision impacted more on me than on my parents( After all& itBs my life(B

-tBs also about the personBs a%e( - ,as "4 : more than old enou%h to start ma1in% my o,n decisions( Maybe if -had been youn%er it ,ould have been more appropriate to listen to my parents( Althou%h - also thin1 childrenal,ays have an opinion about ho, thin%s should be( -tBs


20/89

their catchment24because of the centrality of /often e+tended family to the lives and identity of people in

Abori%inal communities and in many $ALD communities(

)he principles and basic approaches to cultural responsiveness ,ith Abori%inal and $ALD families are

similar& but the practices and 1ey issues are very different( )his is in part due to cultural differences& but also

because of Abori%inal communitiesB e+periences of colonisation& institutional racism and e+clusion( Many

$ALD families also e+perience racism&2and some have e+perienced colonisation( Net their ori%ins : li1e

those of all non8Abori%inal or )orres Strait -slander people in Australia : are in mi%ration& ,hereas Abori%inal

and )orres Strait -slander people are the 7irst Peoples of this land and custodians of the ,orldBs oldest

continuin% cultures( ?or1in% respectfully ,ith Abori%inal families re6uires professionals to en%a%e ,ith the

stren%ths and survival of Abori%inal people andthe adverse impact of colonisation9 the loss of land& life&

resources& po,er& lan%ua%e& culture& community and family(

$ulturally responsive practice is therefore about addressin% discrimination andsupportin% diversity by

reco%nisin% culture& and ensurin% it informs all aspects of service provision9 from inta1e& assessment and

plannin% to implementation& monitorin% and evaluation(

?or1in% ,ith Abori%inal families and communities

Abori%inal people e+perience "(F times the rate of disability of the non8-ndi%enous population nationally2butare under8represented in disability and '$- services(F0Abori%inal people ,ith a disability are %enerally cared

for ,ithin communities and families&F"but they and their families also need opportunities to access hi%h8

6uality& culturally respectful services and supports(

-ncreasin% en%a%ement ,ith Abori%inal families and communities re6uires that professionals learn about

familiesB cultural needs andaddress the on%oin% impacts of colonisation( 7or e+ample& Abori%inal peopleBs

e+periences of dispossession& removal of children and on%oin% discrimination /includin% from services F!

contribute to their self8e+clusion from services& and shape dynamics bet,een professionals and families(

Partnership is crucial to increasin% en%a%ement and buildin% capacity( Mainstream a%encies and

professionals must actively en%a%e ,ith Abori%inal families and communities& and learn from and partner

,ith Abori%inal community8controlled or%anisations /A$$@s( )his ,ill enable them to9

build trust and connections ,ith the community and ,ith families over time

provide more accessible information to families about support options

offer Abori%inal families the choice of receivin% support from Abori%inal or mainstream services& or from

both& ,or1in% in partnership /choice& self8direction and self8determination are important for all families&

but have an added dimension for Abori%inal people %iven the historical conte+t

build Abori%inal familiesB s1ills and 1no,led%e& and provide culturally respectful services and supports(

Partnership can include formal a%reements and protocols bet,een services( 7or professionals it can include

net,or1in%& secondary consultation& referral relationships& co8case mana%ement and pro


21/89

themselves(F5Many families have e+perience of contact ,ith many different 1inds of services but not

necessarily of receivin% support that meets their needs( )his ma1es %ood communication bet,een services

/,ith a familyBs permission and ta1in% a case history before ,or1in% ,ith a family very important(

0earning to support cultural respect$ responsi#eness and sa%ety

7or some Abori%inal communities& there is no cultural concept or %eneric term for disability( 7or many it is not

separated from health or other social concepts(F3@ne study found that in some Abori%inal cultures people,ere not referred to as havin% a disability : disabilities ,ere only discussed in relation to the tas1s that they

prevented a person from doin%( Disability ,as not seen as affectin% a personBs place in the community

1inship system or& necessarily& all of their roles and responsibilities(F4Havin% some understandin% of the

specific cultural concepts related to disability& illness and care mi%ht influence the lan%ua%e that

professionals use ,hen relatin% to families& includin% discussion about ,hat role services mi%ht play(

7amily8centred practice ,ith Abori%inal families re6uires professionals to have some understandin% of a

familyBs 1inship net,or1& and often to en%a%e at the community level& reco%nisin% the culturally specific role

of e+tended families& 'lders& %randparents and other relatives ,ith responsibilities for culture and care9

$arin% is a shared responsibility( -f your duty is to care for a child and you canBt because of other

responsibilities : for e+ample& a duty to country& a duty to 'lders : then you as1 members of the family tocare for the child( So& if a professional is ,or1in% ,ith a family& they should not assume that a mother is

the only primary carer for a child( .ecause of the dynamics in the family& if sheBs %iven permission for her

sister or her aunty to loo1 after that child& then the child is in their care : they can ma1e the decisions

,hile the mother or father are not there( : ody Sa+ton8.arney& Victorian Abori%inal Disability *et,or1

Professionals also need to understand the importance of cultural safety to children and youn% peopleBs

,ellbein%(FSupportin% cultural safety mi%ht include ensurin% children /for e+ample& those at special school

or livin% in care have on%oin% opportunities for connection ,ith culture and community and other children

from their bac1%round( -t mi%ht be especially important to support the cultural needs of children and youn%

people ,hose specific medical needs or disability affect their access to 1no,led%e& culture& community or

country& or ,ho re6uire specific supports to enable them to receive 1no,led%e /such as communication

aides& travel to country& or participate in community festivals and other events(

$ultural safety is also somethin% that concerns families ,hen receivin% services or considerin% approachin%

a service for assistance(F 7or services& creatin% the space for people to feel culturally safe means ma1in%

Abori%inal families feel ,elcome( 7or professionals& it includes9

sho,in% cultural respect /includin% learnin% the specific appropriate ,ays to address and sho, respect

to 'lders and others ,ithin a particular community

bein% ,illin% to learn and challen%e their o,n assumptions and values

bein% committed to ensurin% their practice is culturally responsive

en%a%in% in re%ular reflection on ho, po,er ,or1s in their relationships ,ith Abori%inal families(

eflective practice and feedbac1 from families are crucial to achievin% family8centred practice& and can also

support the buildin% of culturally respectful practice( )here are many tools available for this purpose( VA$$A&

for e+ample& describes ho, its cultural competence frame,or1 can be measured in relation to %overnment

standards for community or%anisations&50and offers a cultural competence continuum5"that can help

professionals reflect on the e+tent of their o,n and their a%encyBs cultural competence(

?hen services and professionals are culturally sensitive& responsive& reflective and respectful& this creates

space for Abori%inal families : includin% prospective clients : to feel culturally safe and to be themselvesB( 5!

)his ma1es it more li1ely that they ,ill be open ,ith service providers& %ivin% professionals a fuller picture of

their needs& and ma1in% it more li1ely that ,or1 ,ill achieve its intended outcomes9


22/89

?or1ers need to have an understandin% of 1inship& and of cultural safety( .ut even if they donBt

understand the familyBs 1inship and history& an understandin% of cultural safety ,ill allo, them to actually

,or1 ,ith people& and learn as they %o( : ody Sa+ton8.arney& Victorian Abori%inal Disability *et,or1

?or1in% ,ith culturally and lin%uistically diverse families

Partnership is also vital to culturally responsive practice ,ith $ALD families& and to buildin% relevant

professional and or%anisational capacity(52)he most important partnerships ,ill al,ays be ,ith the familiesthat the professional is ,or1in% ,ith( @ther important strate%ies for buildin% cultural responsiveness include

secondary consultation& referral and co8case mana%ement ,ith staff in specialist services /includin% mi%rant

resource centres and others ,ith cross8cultural e+pertise and net,or1s( ?here available& these

or%anisations also provide a 1ey service option for $ALD families9

People are more li1ely to access supports in the company of others of a similar cultural bac1%round(

7urther& people ,ith a disability from $ALD bac1%rounds usually identify more readily ,ith people from

similar cultural bac1%rounds than they do ,ith people ,ith a similar disability( 5F

$ulturally responsive practices ,ith $ALD families include9

communicatin% throu%h accredited interpreters ,hen a family re6uests one or ,hen effective

communication is not possible ,ithout one& and usin% lan%ua%e services s1ilfully /includin% receivin%

trainin% on ,or1in% ,ith interpreters

offerin% information to people about their service options in an appropriate lan%ua%e and format because

lac1 of information is a 1ey barrier for $ALD families /consultation mi%ht be needed to determine ,hat

information& lan%ua%e and format is most appropriate& as many refu%ees and other mi%rants have

e+perienced disrupted education and have lo, literacy in their first lan%ua%e

,or1in% in partnership ,ith ethno8specific and multicultural a%encies to increase 1no,led%e& s1ills and

capacity to reach and ,or1 ,ith $ALD families and communities

learnin% about specific aspects of a familyBs culture& includin% their cultural beliefs and practices in

relation to disability& family and ,ho is responsible for carin% for people ,ith a disability& ,hich influences,hether the professional mi%ht su%%est respite or other forms of support& and ,ho in a family the

professional should communicate ,ith

learnin% about diverse understandin%s of human development& raisin% children and the 1no,led%e and

s1ills appropriate to children of differin% a%es= for e+ample& 1no,in% that in some communities all

children are routinely hand8fed until a%e five mi%ht influence the selection of milestones for assessin% a

childBs development& or the desi%n& delivery and revie, of services and supports

shapin% services and supports to address relevant aspects of cultural difference : for e+ample9 a

communityBs reli%ious practices mi%ht influence the timin% of service delivery= attitudes to %ender mi%ht

influence the allocation of staff to a particular family= and attitudes to leisure mi%ht influence activities(

As ,ith Abori%inal families& culturally responsive practice ,ith $ALD families re6uires or%anisational capacityand commitment : the tools& policies& systems and trainin% : to support %ood practice( )his includes

assessment tools that as1 about familiesB lan%ua%e& cultural and reli%ious needs( Professional development

is also important& for e+ample& in ,or1in% ,ith lan%ua%e services and around specific issues relevant to

,or1in% ,ith disability in the or%anisationBs catchment(

)he *ational Medical and Health esearch $ouncilBs /*MH$Bs Cultural competency in health document

describes the need for action on cultural competency at multiple levels9 in family:,or1er interactions& in

professions /,ithin pre8service education or professional standards& in or%anisations and in the service

system as a ,hole(55

0earning to support cultural responsi#eness


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$ulturally responsive practice ,ith $ALD families re6uires that professionals learn about familiesB culture and

conte+t( )he latter can vary for many reasons& not least their mi%ration e+perience( 7or e+ample& e+tended

family plays a richly supportive role in many cultures but is unavailable to many refu%ees and other mi%rants9

*ormally in families Ifrom my cultureJ& e+tended family lives to%ether( *ot here( ?e have no family here(

: .etty& member of a support %roup for families from a *orth Asian community

)he differences in /or lac1 of services in the various countries of ori%in can also ma1e it difficult for mi%rantsto 1no, ,hat support is available& and ,here they mi%ht find it9

-n Imy countryJ ,e donBt have these 1inds of services at all so people are often not a,are that the

services e+ist( Enless they have a friend ,ho says& Nou can %o there& you can %o hereB& they donBt %et

services( )hey need some 1ind of handboo1( -t is particularly hard ,hen you donBt spea1 the lan%ua%e( :

ulia& member of a support %roup for families from a *orth Asian community

?hen learnin% about the culture of a family from a different bac1%round from their o,n& it is important that

professionals remember that all cultures /includin% the dominant An%lo $eltic culture are comple+ and

evolvin%& and every individual and family have their o,n relationship to cultural norms& as this case mana%er

/also from a $ALD bac1%round describes9

.ased on my personal and professional e+perience& - have come across situations ,here it is verydifficult to involve family members in some cultures because of loss of face( )hey are very afraid of

see1in% help from other a%encies because they are afraid that other people mi%ht become a,are of their

problems( .ut there are also subcultures ,ithin the same cultures( So that sensitivity and understandin%&

and insi%ht into that particular cultural situation are critical( -t can be a challen%in% area for anyone( 'ach

family is different= each individual is different(

Some cultural beliefs and practices can have ne%ative impacts( )his applies as much to mainstream beliefs

and practices as to those of minority communities( Some are positive and protective( ?hen attemptin% to

understand ho, a cultural practice impacts on children& youn% people or families& professionals should be

,ary of the subtle po,er of stereotypes( Many cultural beliefs and practices are comple+ and sometimes not

,ell understood by professionals( Secondary consultation can be invaluable& but the most relevant source of

information about a familyBs culture ,ill be family members themselves(

Pull out .o+ 8 Personal Perspectives9 a family support %roup

$onsultations for these %uides included %roup intervie,s ,ith parents in support %roups for several $ALDcommunities( Members of a %roup from one South8'ast Asian community discussed ho, a professionalBsinterpersonal 6ualities and s1ills could ma1e a bi% difference( -f on the first day you have a %ood ,or1er ,ho1no,s the ri%ht 6uestions to as1 and is friendly and ,arm& it can open up the person&B one parent said( -f there isno friendliness there& then it bloc1s everythin%( -f someone understands me - feel released( -f they listen ,ith nounderstandin% it ma1es me heavy( )he interpreter needs to be %ood too( -f the interpreter sho,s arro%ance ,ecanBt open up(B

A number of parents tal1ed about the impact of beliefs about and attitudes to disability in their community()raditionally& ,e believe that a child has a disability because the family did somethin% ,ron% in a previous life&,hich is ,hy ,e feel shame&B said one( Another related an e+perience in her place of ,orship of her dau%hterbein% lau%hed at by children she ,anted to play ,ith( - felt so much pain( - felt very an%ry( )hey ,ere


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ho, it can be used&B one parent said( Esually they donBt e+plain thin%s unless - as1 6uestions( )he problem is& Imy

communityJ donBt 1no, the ri%ht 6uestions to as1(B


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3 Family-centred practice model

A model for everyday practice

A practice model can help professionals to better understand and implement family8centred practice bybrea1in% do,n 1ey concepts( )hese %uides use a model developed by American researchers $arl Dunst and

$arol )rivette&53and also dra, stron%ly on the ,or1 of Australian researcher )im Moore and others 54( )he

model divides family8centred practice into three 1ey elements /see 7i%ure " : practices that build

relationships& practices that support choice and participation& and technical 6uality : and associated aspects(

Figure 1: *!e t!ree elements o% %amily-centred practice

Adapted from Dunst and )rivette& !004

)he follo,in% chapters e+plore each of these in turn& discussin% 1ey practice issues dra,n from the

e+periences of families& youn% people and professionals( )hey include practice e+amples& tips and ideas(

Many more practice tips are contained in the sector8specific %uides& alon%side %ood practice scenarios

colour8coded to the practice model elements for easy reference(

'lement "9 Practices that build relationships

)hese are professionalsB values& behaviours and s1ills that help build positive relationships& especially ,ith

children& youn% people and families( )he model brea1s these elements into t,o aspects9 the professionalBs

beliefs& values and attitudes= and the professionalBs interpersonal behaviours and s1ills(

A number of relationships are important to family8centred practice ,ith children& youn% people and families(

)hese include relationships bet,een9

children and youn% people and their families

children& youn% people& families and the professionals and a%encies that ,or1 ,ith them

professionals and their collea%ues and supervisors

or%anisations ,ithin and beyond each sector

or%anisations and %overnment(

)im Moore and others5point to commonalities in positive& effective relationships bet,een mana%ers and

staff& and bet,een professionals and families(5)herefore& or%anisations that support staff to ,or1 in family8

centred ,ays also create a culture of mutual respect and collaboration for staff and service users( Moorealso su%%ests a cascadeB effect& ,hereby the relationships bet,een or%anisations and %overnment influence


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those bet,een or%anisations& ,hich influence those ,ithin or%anisations and so on( $onsultations for these

%uides particularly hi%hli%hted the need to improve relationships /includin% communication& coordination and

inte%ration bet,een the professionals and or%anisations involved in supportin% children& youn% people and

families(

'lement !9 Practices that support choice and participation

Victorian policy imperatives in relation to family and individual choice stron%ly underpin this element offamily8centred practice( )he literature su%%ests that this is the most effective element of family8centred

practice for improvin% outcomes for children and youn% people(30esearch also sho,s that ,hile many

professionals understand the importance of active listenin%& empathy and sensitivity& fe,er e+cel in practices

that help children& youn% people and families ma1e meanin%ful choices or ta1e action on their on behalf(3"

)he first aspect of this element is about empo,erin% children& youn% people and families to ma1e informed

choices about services& set %oals& e+plore ,hich resources mi%ht help meet them and ta1e action to %et

them( )he second aspect is about ensurin% children& youn% people and families ha#eoptions that meet their

needs( -t re6uires professionals and or%anisations to thin1 creatively to help shape support and services to

peopleBs needs and preferences& and to reco%nise and respond ,hen these chan%e(

'lement 29 )echnical 6uality

7amilies rely on professionals to have the 1no,led%e and s1ills re6uired to deliver hi%h86uality services and

supports( ?ithin family8centred practice& technical 6uality is about professionals applyin% their 1no,led%e

and s1ills : their e+pertise : in ,ays that impact positively on families& children and youn% people(

Professionals and services need to see the 1no,led%e& s1ills and behaviours re6uired for %ood family8

centred practice as critical areas of e+pertise in themselves( Professionals ac6uire and build e+pertise

throu%h their pre8service education /includin% vocational courses in disability services& teachin%& social ,or1&

physiotherapy& speech patholo%y& occupational therapy and psycholo%y& on8the8


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. /ractices that 'uild relationships

values, attitudes and 'eliefs

ey messa%es

esearch sho,s that positive relationships bet,een children& youn% people and families and their service

providers are critical& and that these should be open& mutually respectful& trustin% and collaborative& based on

shared decision ma1in% and partnership(

)hese relationships are deeply affected by the professionalBs o,n values and


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her doin% so a%ain for years( @ther families have felt


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sometimes challen%e not only the professionalBs o,n values but also those inherent in the systems and

processes they ,or1 ,ith9

?or1in% ,ith Abori%inal clients is interestin% because they have different values( - ,rote a plan recently

for an Abori%inal client( All they ,anted ,as thin%s outside the %uidelines( Nou could see that they


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parentin% competence&40the classification intellectual disabilityB ,as fre6uently used in assessments to

imply a ran%e of parentin% deficits& includin% reduced capacity to learn appropriate parentin% behavioursB( 4"

As ,ith other parents and care%ivers& those ,ith an intellectual /or any other disability re6uire services and

supports that meet their needs and preferences and enable them to ma1e meanin%ful choices for themselves

and their children( Discriminatory attitudes to,ards parents ,ith an intellectual disability are obstacles to

family8centred practice& preventin% professionals from observin% the familyBs stren%ths& from puttin% helpful

supports in place& and from ,or1in% to,ards promotin% family connectionsB(4!

Sharin% po,er

Perhaps the most important value that family8centred practice re6uires practitioners to hold is that children&

youn% people and families can /and should be able to ma1e their o,n choices& direct their o,n supports and

obtain the assistance they need to live the life they choose( ?hoever the professional is ,or1in% ,ith&

enactin% this re6uires insi%ht into the po,er dynamics in the relationship and a commitment to partnership

and sharin% po,er( 7amily8centred practice researchers refer to the need to transform po,er overB dynamics

that characterise medical model approaches to po,er ,ithB relationships of collaboration& information and

resource sharin%(42

)his shift is happenin% in many sectors& ,ith chan%es in approaches to fundin%& assessment& plannin%&delivery and revie, of services and supports( 'ven simple service delivery chan%es can support the process&

such as arran%in% appointments to fit ,or1in% parentsB schedules( Professionals should be mindful of the

po,er and authority they continue to hold by virtue of their status& e+pertise and access to information9

'ven thou%h ,e donBt see ourselves as po,erful fi%ures : it doesnBt matter ho, much ,e aim at a

partnership : ,e are %oin% in ,ith e+pert 1no,led%e and are bein% paid as professionals( )hat does

create an uneven relationship no matter ,hat( -tBs about ho, you e+ercise that& ,hether you see it as

po,er or influence( : '$- service mana%er

Many professionals have the po,er to impact on a familyBs access to resources& ,hether directly or indirectly

/for e+ample& by reco%nisin% a need and offerin% referral( -ndividualised fundin% is chan%in% this to an

e+tent( *evertheless& professionals need to be a,are of their po,er to reco%nise and respond to familiesBneeds /or not : see AmyBs story& pa%e 2"& includin% ho, they respond to peopleBs e+pressions of need9

- said my son had all these needs and they said it is impossible to %et fundin% for all these needs( - feel

li1e a be%%ar as1in% for thin%s( -t is embarrassin% to be%( : 7atima& member of a support %roup for

families from a Middle 'astern community

Professionals also need to be conscious that some people find it more difficult than others /for various

reasons& cultural or other,ise to spea1 freelyB to people in authority( ?innie /a member of a support %roup

for parents of a *orth Asian community had a positive e+perience of plannin% for her childBs needs throu%h

student support %roup /SSG meetin%s at primary school( .ut at hi%h school she found the meetin%s far too

brief& and that the school had already set her childBs %oals and ,ritten her individual learnin% plan9

)hey


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ori%in or on their


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/ractices that 'uild relationships

interpersonal 'ehaviours and s"ills

ey messa%es-nterpersonal 6ualities and s1ills that support positive relationships include9 listenin% ,ell= bein% tuned into

non8verbal si%nals= en%a%in% respectfully ,ith children and youn% people= communicatin% ,ell across

lan%ua%e& educational and other barriers= connectin% families ,ith other families= and s1ilful %atherin% of

information& includin% by as1in% the ri%ht 6uestions and empo,erin% people to tell their storyB if they ,ish(

Professionals need to be emotionally responsive to families& as appropriate to their role( )his includes

e+pressin% themselves ,ith care& bein% sensitive to the stressors in peopleBs lives& affirmin% the importance

of family in children and youn% peopleBs lives& buildin% trust and referrin% appropriately( A critical issue is

communicatin% medical and development issues to convey accurate information and a sense of hope(

Stron% interpersonal s1ills are needed to support people to ma1e informed choices by offerin% them

information& addressin% their concerns& helpin% them to ma1e sense of technical or conflictin% information&and to ,ei%h the ris1s and benefits of different options( Professionals should not dismiss peopleBs online

research& but rather offer hi%h86uality information& as1 people about their online researches& and offer to read

and discuss any information they find that raises concerns for them(

A 1ey challen%e is ,hen resources are inade6uate to meet peopleBs e+pressed needs( Professionals should

reco%nise peopleBs needs /even if they cannot all be met by specialist services& ensure they understand

them fully and ,or1 ,ith families to find other ,ays to meet them if necessary& for e+ample& throu%h a

combination of informal& universal and specialist supports( e%ular communication is critical& includin% about

the level of services available throu%h specific fundin%& or remainin% to the family in a %iven period(

7amilies need to be 1ept informed of their childBs e+periences& pro%ress and any issues that arise& especially

if the family is not present ,hen the professional is ,ith the child or youn% person( ?ith adolescents andyoun% adults& this must be balanced ,ith the youn% personBs ri%ht to privacy& e+cept ,here a duty of care

issue arises( Professionals must also inform families about any chan%es that mi%ht affect services(

Professionals need stron% interpersonal s1ills and behaviours to ,or1 ,ell ,ith children& youn% people and

families( Such s1ills are critical to buildin% positive relationships& and are complemented by the personal

stren%ths that tend to characterise professionals in this field& includin% empathy& ,armth and sensitivity( @ne

behaviour essential to family8centred practice is bein% available to families and youn% people( )his can be as

simple as providin% contact details /especially if the family is usually not present ,hen the professional sees

their child or havin% an open doorB policy& ,hich Melissa /see p(2" appreciated at her dau%hterBs

1inder%arten and no, does at her mainstream school(

@ther 1ey behaviours and s1ills include %ood communication& emotional responsiveness& supportin%informed decision ma1in%& dra,in% out familiesB 1no,led%e& communicatin% sensitive information

appropriately& respondin% appropriately ,hen resources are inade6uate& en%a%in% directly ,ith children and

youn% people and 1eepin% people in the loop(

$ommunication

0istening

S1illed listenin% builds trust and is essential to enablin% service providers to %ather the information they need

to plan effective supports ,ith families(Many professionals are %ood listeners& and yet consultations for

these %uides revealed that too often families and youn% people still do not feel heard( Some families

described professionals as sometimes too solution focused& and as less than sensitive to ,here they ,ereon their emotional


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-tBs about bein% 6uic1 to listen& and slo, to %ive advice until you really 1no, the family and understand

)he most positive interactions have been ,here people ac1no,led%e the challen%es but spea1 to me in

an empo,erin% ,ay : ac1no,led%e and hear ,hat -Bm sayin%& and try to ,or1 ,ith me( Sometimes

people cut you off& donBt ,ant to listen( -tBs also about understandin% ,here - am on the


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methods and %ivin% them time to respond& sho,s the depthof a professionalBs commitment to inclusion& and

helps to build a relationship ,ith youn% people and their family9

Nou often ,in the heart of a parent if you can en%a%e ,ith their child( - donBt %o there consciously

thin1in% that& itBs


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People ,ith limited 'n%lish should be as1ed if they ,ould prefer to communicate throu%h a 6ualified

interpreter /see chapter ( -t isnBt al,ays practical to provide face8to8face interpretin% in every encounter /for

e+ample& durin% every respite or attendant care session& but service providers should offer an interpreter

durin% assessment& plannin% and revie, sessions& and first visits by support ,or1ers( )elephone interpretin%

is also a crucial support in emer%encies or if information is needed /by either party 6uic1ly(

Esin% a professional interpreter enables both parties to communicate much more comple+ information& ,ith

%reater accuracy& and ma1es it more li1ely that service users ,ill feel confident to as1 6uestions( $ritically&

usin% an interpreter enables professionals to %et an accurate understandin% of the situation& needs and

choices of the person they are ,or1in% ,ith& ma1in% it more li1ely that supports ,ill meet their needs(

Professionals must al,ays use professional interpreters& never family or friends( )his helps ensure that9

interpretin% is accurate and of hi%h 6uality

family members are not put under undue pressure or in inappropriate situations& and can concentrate on

providin% support for each other and information about their o,n and their childBs needs

important principles of confidentiality and impartiality are not breached(

)hese all contribute to service 6uality and also help protect the professionalBs or%anisation from le%al ris1(

Professionals need to reassure people about the rules of confidentiality for professional interpreters& and let

them 1no, that they can as1 for a different interpreter if they donBt feel comfortable ,ith the one provided( -t

is %ood practice to record the name of a familyBs preferred interpreter and as1 for that person ,hen boo1in%

interpretin% services for that family(

Professionals should offer detailed& plain lan%ua%e information about their service /and the service system

%enerally to people ,ho have no or limited e+perience of receivin% services in Victoria /for e+ample&

because they are mi%rants or have been disenfranchised( Many $ALD familiesB e+pectations are based on

the service systems in their countries of ori%in( Professionals should as1 ,hether it ,ould be useful to

e+plain ho, their service& profession or therapeutic modality ,or1s& includin% its rationale and benefits(

Gatherin% informationAs1in% the ri%ht 6uestions& ,hether open8ended or specific& helps professionals to elicit meanin%ful

information( ?hat ,ould you li1e to ,or1 onCB can be dauntin%& especially early in a familyBs


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-t is %ood ,hen they as1 6uestions about the child but also about the family& ,hen the 6uestions openly

address the issues a family mi%ht be facin%( ?hen a ,or1er as1s about the issues for the family it can

open up your heart( : Lilly& member of a support %roup for families from a South8'ast Asian community

@thers do not ,ant to have to tell their stories or e+plain information repeatedly& in ,hich case service

providers can assist by sharin% information /,ith permission(

Professionals also need to see1 out tools and methodolo%ies /see chapter : for e+ample& for assessment&plannin% or revie, : that help them dra, out the rich 1no,led%e that children& youn% people and families

have of9 each otherBs stren%ths& s1ills and needs= the familyBs and each memberBs dreams and %oals= and

ho, thin%s ,or1 in their family& includin% ho, family members ,or1 around each otherBs needs(

Supportin% informed choice

-nformed decision ma1in% re6uires families and youn% people to consider both their o,n needs and

preferences andthe relevant information& for ,hich they often rely on professionals( Many people have

limited information about supports and services& especially those ,ho have limited 'n%lish or have recently

arrived& have lo, literacy or are other,ise mar%inalised( *atasha& a member of a support %roup for families

from a Middle 'astern community says9

?e %ot some help but no one e+plained the basic thin%s to me( Si+ years later - found out - ,as eli%ible

for some $entrelin1 payments for all of those si+ years( *o one ever told me(

Amina& another member of the %roup says9

?or1ers donBt tell you the basic thin%s because they thin1 you already 1no,( .ut ,e donBt 1no,( ?hen -

%ave birth to my son& no one told me - ,as able to %et a disabled par1in% permit( 7or five years ,e didnBt

1no, about this( ?e %ot many fines(

Professionals should offer Abori%inal and $ALD families service options tar%eted to their cultural community&

if any are available /this mi%ht sometimes re6uire secondary consultation or other research( -t is also

important al,ays to offer them full information about mainstream services and supports(

%%ering in%ormation

Some professionals see family8centred practice as simply doin% ,hat families ,antB& and are unsure if they

can offer input( -f it is clear that a family or youn% person is una,are of information or ideas that mi%ht assist

them& it is appropriate to as1 if& ,hen and ho, they ,ould li1e to hear about it( Dependin% on the conte+t&

information mi%ht ,ell be the familyBs most ur%ent need9

- %ave a presentation about self8care to a %roup for people still on the ,aitin% list( -t became evident very

6uic1ly that unless those parents had information& and a fe, services sorted out& they ,erenBt %oin% to

ta1e any time to loo1 after themselves( - ,as the same( @ne of my 1ids had a brain tumour ,hen they

,ere little( - didnBt care about havin% a massa%e IbutJ - sure as hell ,anted to 1no, ho, - %ot to the

doctors& and about hospital ,aitin% lists( : '$- professional

Professionals need to offer information to people in a ,ay that empo,ers them to ma1e their o,n decisions

freely and in their o,n time( Any su%%estions professionals offer should arise from a deep understandin% of

the familyBs needs& priorities and concerns& and be presented as possibilities and options( -t can be helpful to

do the follo,in%9

$hec1 ,hat information the family and youn% person thin1 they mi%ht ,ant& and ,hen( -nformation

overload is common( -f people donBt have a lot of information& it mi%ht be helpful to describe the 1inds of

thin%s you could tell them& and as1 ,hich ,ould be helpful(

As1 families and youn% people about ,hat they mi%ht already 1no,( )his helps the professional to9 avoid

patronisin% them= address any misconceptions or misinformation they mi%ht have= en%a%e ,ith any

beliefs and values they mi%ht e+press= and use lan%ua%e they can relate to( $hec1 if the e+planation is clear enou%h& and ,hether people ,ant additional information(


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Ese plain lan%ua%e& avoid unnecessary


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7or people ,ho are %eo%raphically isolated : or can only tap into community late at ni%ht ,hen all other

tas1s are done : online communities can be helpful( -t is important& ho,ever& to chec1 in re%ularly ,ith

families ,ho use these sources of support& as Daniela cautions9

- do access an online support %roup IbutJ itBs very confrontin%( )here are a lot of parents ,ho are off the

ed%e& ,

02 Familycentredpracguide Foundation Guide 1012

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Transcript of 02 Familycentredpracguide Foundation Guide 1012