1 WORKING WITH CHILDREN, ADOLESCENTS AND YOUNG ADULTS WITH A DISABILITY AND THEIR FAMILIES A GUIDE FOR PROFESSIONALS IN INTAKE, AND CASE MANAGEMENT ROLES
2 PAGE ii WORKING WITH STUDENTS WITH A DISABILITY AND THEIR FAMILIES Published by Disability Services Division Victorian Government Department of Human Services 50 Lonsdale Street Melbourne Victoria Australia June 2012 Copyright State of Victoria, Department of Human Services and Department of Education and Early Childhood Development, This publication is copyright. No part may be reproduced by any process except in accordance with the provisions of the Copyright Act ISBN Authorised and published by the Victorian Government 50 Lonsdale Street, Melbourne ( _DHS7932) If you would like to receive this publication in another format, please phone , using the National Relay Service if required. This document is available as a word file and a PDF file on the Internet at
3 PAGE iii WORKING WITH STUDENTS WITH A DISABILITY AND THEIR FAMILIES ACKNOWLEDGEMENTS The Department of Human Services and the Department of Education and Early Childhood Development wish to acknowledge the contribution of colleagues from around Victoria who provided information and feedback during the development of the family-centred practice guides suite. This project aimed to be family centred in its approach; grateful thanks to all the families and people with a disability who shared their stories and ideas for the project with generosity, courage and candour. Names and other identifying features have been changed to preserve anonymity. The project team were: from Red Tree Consulting, consultants, researchers and writers Sarah Marlowe, Elizabeth Wheeler and Cara Brough; from the Association for Children with a Disability, project manager and Chief Executive Officer Elizabeth McGarry, project worker Janice Chan and other ACD staff and members; and researchers and critical readers Carmel Laragy from the RMIT School of Global Studies and her colleagues Mary Collins and Enza Santangelo. Suggested citation: Department of Human Services and Department of Education and Early Childhood Development 2011, Family-centred, personcentred planning: a guide for professionals in intake, planning and case management roles, State Government of Victoria, Melbourne.
4 PAGE iv WORKING WITH STUDENTS WITH A DISABILITY AND THEIR FAMILIES
5 PAGE 1 CONTENTS 1. Introduction 3 Who this guide is for 3 Principles and context 3 2. Foundations 5 Defining family-centred practice 5 The evidence for family-centred practice 6 Family and person centred 7 Family-centred practice in our diverse community 7 Working with Aboriginal families 8 Working with culturally and linguistically diverse families 9 Family-centred organisations 9 A family-centred service system 9 Good practice scenario: Eleanor Practices that build relationships 13 Your beliefs, attitudes and values 13 Reflect on your values 14 Understand and share power 14 Interpersonal behaviour 14 Support people to make informed decisions 15 Offer and use interpreters skilfully 16 Keep people in the loop, stay in touch 16 Good practice scenario: Raha Practices that support choice 20 Decision making and action 20 Work with people to set outcomes 21 Release people s capacity to act 21 Children, young people and decision making 22 If you are concerned about people s choices 22 Flexible and responsive services 22 Provide flexible, tailored services 23 Respond to change 23 Good practice scenario: Paul 24
6 PAGE 2 5. Technical quality 28 Draw on everyone s knowledge 28 Use creative planning tools 29 Improve teamwork and service integration 30 Refer and use secondary consultation 30 Self-care and maintaining boundaries 31 Good practice scenario: Jimmy Monitoring and improving practice 36 Reflective practice and these guides 36 Monitor and seek feedback 37 Next steps 37 Endnotes 38
7 PAGE 3 1. INTRODUCTION It is good when [professionals] ask questions about the child but also openly address the issues a family might be facing. This is very important because, traditionally when someone had a disabled child, they keep things to themselves. They don t tell friends or others in the community. They feel a lot of guilt. Traditionally, we believe that a child has a disability because the family did something wrong in a previous life. They are being punished by God. That s why we feel shame. When a worker asks about the issues for the family it can open up your heart. Lilly, member of a support group for families from a South-East Asian community A lot of my friends, their marriages have broken down. So sometimes other things take priority. [Workers need to remember that] it s a life. It s not just managing a child with additional needs it s about being quick to listen, and slow to give advice until you really know the family and understand. Kate, mother of Jamie (who has pervasive developmental disorder), Melanie and Callum (who both have Asperger s syndrome) Who this guide is for This is a resource for disability service professionals in planning-related roles who wish to explore how working in more family-centred ways can enhance their practice. These roles vary but include intake, assessment, case management and facilitation, and some aspects of social work. The guide aims to help orient newer professionals to the approach and to support their more experienced colleagues to reflect on and improve their practice. Research suggests that even professionals dedicated to familycentred practice find it difficult to fully maintain it over time. Other research reveals that a gap can arise between how family-centred professionals think of the quality of their work, and the experiences of those they work with. 1,2 This is one of seven guides for those working with people with a disability or developmental delay * aged 0 to 25 and their families in early childhood intervention (ECI), disability support, planning and education. Readers interested in deeper exploration should read the foundation or organisational guides. Principles and context The policy context for familycentred practice differs according to professional setting, but broadly, developments are towards greater emphasis on: evidence-based and reflective practice; inclusion and participation; choice, self-determination and self-directed support; service integration; and partnership with families (see box page 4). * All subsequent references will be to people with a disability for ease of reading.
8 PAGE 4 Principles Children and young people with a disability or developmental delay and their families are best placed to know what mix of services and supports are likely to meet their needs. Services should be based 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 based on a partnership between parents and professionals should maximise the choices and opportunities available to children and young people with a disability or developmental delay and their families. The Victorian Government s vision is based on the following service principles: > The best interests of children and young people are paramount. > Services and supports protect and promote human rights, including the rights of the child and young person with a disability or developmental delay. > Services and supports adopt a child- and family-centred approach that promotes choice and opportunity. > Services and supports are accessible and coordinated to intervene early and adopt a lifecycle approach to the planning and provision of services. > Services and supports are integrated to meet the holistic needs of children and young people with a disability or developmental delay and their families. > Services and supports promote social inclusion. > Services and supports are accessible and appropriate for children and young people from diverse cultures and their families.
9 PAGE 5 2. FOUNDATIONS We ve had many case managers over the years, some great, some I hardly know. The one we ve got at the moment is amazing. She is giving us a lot of challenges, making us think about what s possible, putting us in touch with people who will help develop Mark into a capable man, comfortable going into the community and living his life. Alison, mother of Mark (who has a mild intellectual and physical disability) One case manager was particularly good. She didn t get us more [funding] than the others, but she would identify what would work for us, then see if she could get it. If she couldn t, well so be it. They don t have endless amounts of money. What you can have and what you need are probably very different things. Most families understand that. But [some case managers] would come in and almost contain what you could say you needed. Amy, mother of Emily (who has complex medical needs), her older brother, Anthony, and younger sister, Lisa (who has a learning delay) Defining family-centred practice Family-centred practice is a set of values, skills, behaviours and knowledge that recognises the centrality of families in the lives of children and young people. It is grounded in respect for the uniqueness of every person and family, and a commitment to partnering with families and communities to support children and young people with a developmental delay or disability to learn, grow and thrive. It puts family life and the strengths, needs and choices of people with a disability and their families at the centre of service planning, development, implementation and evaluation. Family-centred practice is not an end in itself, rather it enables professionals to do what they do more effectively. It is no less important because of that. Evidence shows that the way supports are provided has an impact on families, as well as the supports themselves. 3 The concept of family life is central, and goes beyond the child or young person and family themselves. It is them and everything that makes up their world: their relationships, resources and daily lives; their culture, community and language; their stresses, needs and tensions; their preferences, interests and priorities; their goals, hopes and aspirations. When thinking about complex ideas, a model can be a useful tool for breaking down and focusing on central ideas. These guides use a model drawn from the work of American researchers Carl Dunst and Carol Trivette, 4 which divides family-centred practice into three key elements, and associated aspects (see Figure 1).
10 PAGE 6 Figure 1: The three elements of family-centred practice Family-centred practices Practices that build relationships Practices that support choice & participation Technical quality Staff values, attitudes and beliefs Staff interpersonal skills and behaviours Decision making and action by students and families Flexible and responsive services and supports Staff expertise, applied to benefit children and families Adapted from Dunst and Trivette, 2007 > Practices that build relationships are summarised in the model as the professional s beliefs, values and attitudes, and their interpersonal behaviours and skills. > Practices that support choice and participation are those that seek to empower children, young people and families to make informed decisions and take action, and those that ensure professionals respond to their unique and changing needs. > Technical quality is about having the information, knowledge and expertise needed to deliver highquality supports and services, and applying it for the benefit of children and families. The following chapters outline each element in turn, giving tips and ideas for practice. In between, their implications are explored through good practice scenarios drawn from the experiences of children, families and professionals. Practice points alongside are colourcoded to the elements for easy reference. The evidence for family-centred practice In recent years, increasingly strong evidence has begun to emerge about the efficacy of family-centred practice in a range of settings. A 2007 synthesis of 47 studies, primarily in early childhood intervention settings, reported links between family-centred practice and greater family satisfaction with the helpfulness of services, as well as improvements in parental self-efficacy, levels of social support available to the family, child behaviour and wellbeing, and family functioning. 5
11 PAGE 7 Australian reviews of the family-centred practice literature have concluded that the theoretical evidence for the approach is strong, 6 and that family-centred practice produces positive parent and family benefits beyond those produced by structural intervention factors (such as the form and frequency of services provided) and non-intervention factors (such as employment, housing and health care). 7 In 2010 a further synthesis of 52 studies concluded that: familycentred approaches had both direct and indirect effects on parent, family and child behaviour and functioning; indirect effects were the strongest; and these occurred through parental self-efficacy beliefs. That is, parental self-efficacy and wellbeing influenced parent child interactions, which in turn had a positive effect on child development. 8 Family and person centred Approaches to practice in disability services have changed over time, moving from a largely medical model to a person-centred, and now more family-centred approach. Traditionally most supports were clinic based and focused on the child or young person, with goals set by professionals. 9 In the past two decades this began to change as services moved into community settings and professionals recognised the benefits of family involvement in setting goals, shaping services and carrying out activities. The benefits of drawing on the knowledge of the child, young person and family to better understand their needs, environment and context are also recognised. 10,11 Working with families is crucial, but the focus on the child, adolescent or young adult with a disability remains equally important. This is because supporting their potential, wellbeing, inclusion and participation is the ultimate goal. It is also because almost all young people, as they mature, want more say in their daily life and future. When they reach adulthood, most will have the legal right to make their own decisions. All young people need support to develop the skills and confidence needed to do so, or to contribute to decision making according to their capacity. Professionals need to consider how to support a child or young person s input into decisions that affect them. In some ways family and personcentred practice are complementary, requiring similar skills and behaviours. Yet they can come into tension if the views of young people and families conflict, as can happen in any family. Family-centred practice in our diverse community Victorians are very diverse. We come from more than 200 nations and 120 faiths, speak more than 200 languages and dialects, and include more than 30,000 Aboriginal people, representing more than 30 distinct communities. Almost a quarter of us were born overseas, 74 per cent from non-english-speaking countries; one in five of us speak a language other than English at home. 12 Culturally responsive practice is when professionals and organisations respond respectfully and skilfully to the needs of diverse communities, addressing discrimination and ensuring that culture informs all aspects of service provision: from intake, assessment and planning to implementation, monitoring and evaluation.
12 PAGE 8 Culturally responsive practice and family-centred practice are deeply linked because culture profoundly shapes both human development and family structures, whatever a family s cultural background. Understanding and responding skilfully to this is vital to: looking at the whole child and not just the presenting problem, looking at the whole extended family and not just the parents, and looking at the whole community and not just the family culture is a key mediator between people and their social environments. 13 The principles and basic approaches to cultural responsiveness with Aboriginal and culturally and linguistically diverse (CALD) families are similar, but the practices and key issues are very different, in part due to cultural differences, but also because of Aboriginal communities particular experiences of colonisation, institutional racism and exclusion. Working with Aboriginal families Partnership with Aboriginal families and communities, and Aboriginal Community Controlled Organisations (ACCOs) is critical to increasing engagement and building capacity. Partnership can include formal agreements and protocols, networking, secondary consultation and referrals, co-case management and project work. The Victorian Aboriginal Child Care Agency s (VACCA s) Aboriginal cultural competence framework 14 offers helpful strategies for building productive and respectful partnerships. Family-centred practice with Aboriginal families requires professionals to have some understanding of a family s kinship network, and often to engage at community level, recognising the culturally specific role of extended families, Elders, grandparents and other relatives with responsibilities for culture and care. Professionals also need to understand the importance of cultural safety to children and young people s wellbeing. 15 Supporting cultural safety might include ensuring children (for example, those at special school or living in care) have ongoing opportunities for connection with culture and community and other children from their background. Cultural safety is also something that concerns families when receiving services or considering approaching a service for assistance. 16 It asks that professionals show cultural respect (for example, when addressing Elders), and strive to learn, reflect and share power. When services and professionals are culturally sensitive, responsive, reflective and respectful, this creates space for Aboriginal families including prospective clients to feel culturally safe and to be themselves. 17 This makes it more likely that they will be open with you as a service provider, giving you a fuller picture of their needs, and making it more likely that your work will achieve its intended outcomes: Workers need to have an understanding of kinship, and of cultural safety. But even if they don t understand the family s kinship and history, an understanding of cultural safety will allow them to actually work with people, and learn as they go. Jody Saxton-Barney, Victorian Aboriginal Disability Network
13 PAGE 9 Working with culturally and linguistically diverse families Partnership is also fundamental to culturally responsive practice with CALD families; 18 first with families, and with staff in specialist services (including Migrant Resource Centres and others with cross-cultural expertise and networks) for service provision, secondary consultation, training, referral and co-case management. Professionals need to learn about aspects of a family s culture that might influence the design and delivery of services and supports. These might include the family s: cultural beliefs and practices in relation to disability, family make-up and who is responsible for caring for people with a disability; understandings of human development, raising children and the knowledge and skills appropriate to children of differing ages; attitudes to gender and separation of the sexes; practices around interpersonal communication, touch and personal space; beliefs about which matters are private and which can be discussed openly; and management of everyday family life, including meals, transport, leisure and cultural observances and celebrations. Remember that all cultures (including the dominant one) are complex and evolving, and every individual and family have their own relationship to cultural norms. Be wary of the subtle power of stereotypes; many cultural beliefs and practices are complex and sometimes not well understood by professionals. Secondary consultation can be invaluable, but the most relevant source of information about a family s culture will always be the family members themselves. As with Aboriginal families, culturally responsive practice with CALD families requires organisational capacity and commitment the tools, policies, systems and training to support good practice. This includes assessment tools that ask about families language, and cultural and religious needs. Professional development is also important, for example, in working with language services, and around specific issues relevant to working with disability in the organisation s catchment. Family-centred organisations Every practitioner s work is influenced by many factors, not least the support, supervision and professional development available to them, their workplace role, structure and conditions, and their organisation s policies and procedures. These impact greatly on how successfully any one practitioner can implement familycentred practices. Australian familycentred practice researcher Tim Moore and others 19 point to commonalities in positive, effective relationships between managers and staff, and those between professionals and families, suggesting that one influences the other. 20 Organisations should therefore support staff to work in family-centred ways and create a culture of mutual respect and collaboration for both staff and service users. This is discussed further in the organisational guide in this suite. A family-centred service system Relationships between organisations are also critical. Most families use multiple services and experience the support they receive as a service system. Poor integration in that system can create real difficulties for them. People in planning and case management roles have a crucial role in improving communication and coordination between diverse services (see page 16).
14 PAGE 10 GOOD PRACTICE SCENARIO: ELEANOR Practices that build relationships Practices that support choice and participation Your technical expertise that benefits children, young people and families The people in this story Eleanor: person with a disability Carl: Eleanor s father Diane: Eleanor s neighbour Annette: case manager Darren: social worker Graeme: facilitator Eleanor is 18 and lives with her father, Carl (65). She is paraplegic and has an acquired brain injury (ABI) that affects her memory and sight, and causes seizures the result of a sports accident at age 11. The only service the family has accessed for some years is personal care for Eleanor from the local council. Carl has just been rushed to his local hospital with a serious heart attack. As soon as he regains consciousness Carl is frantic to talk to someone about Eleanor, who is at home. His neighbour Diane will be able stay until more support is available, he says, but she has young children so Eleanor will need more support soon. A nurse brings the social worker, Darren, who first rings Diane, then after-hours respite response. Given the urgency, Darren is put straight through to a case manager, Annette. After hearing the situation, Annette asks Darren if Carl is happy with the support Eleanor will receive from her neighbour. She asks Darren to let Carl know she will first visit Eleanor, then Carl himself, as soon as possible. She then asks Darren for Diane s phone number. Annette calls Diane. After Annette tells Diane what is happening, she asks to speak to Eleanor. She is very upset about her dad, and anxious about who will look after her if he is in hospital for long. Annette listens, reassuring Eleanor that Carl is getting good care, and that she will arrange for meals on wheels and personal assistance for Eleanor through the local council. She then rings the council to make these arrangements. She calls Eleanor back to let her know that a support worker called Nadia will be there in the morning to help before Diane leaves, and that Annette herself will visit Eleanor after that. Nadia comes at eight the next morning to help Eleanor shower and dress. Annette arrives at 9.30 and goes first to Diane s house. Over a cup of tea it becomes clear that Diane and her partner, Kim, are close to Eleanor and Carl, but their capacity is limited by having a newborn and a two-year-old. They go across to Eleanor s house and find her tired and still worried about her dad, but less anxious. Nadia was nice, she says, and did everything just like her dad or Diane would. She wants to see Carl, so Annette rings to check how he is, then takes her into the hospital. Annette gets a coffee while the two have time alone, then they all talk in the ward. Annette listens while Carl and Eleanor discuss his hospital experiences, and how she managed without him. She > Make sure family members are happy with arrangements > Talk directly to the person with a disability about their family member s situation > Report back and let the person know what is happening > Draw on the family and close friends knowledge to understand needs > Respect family privacy, listen and learn from observation
15 PAGE 11 sees how proud Carl is of his daughter s ability to cope, and how interdependent they are. Carl is likely to be in hospital for at least a week, so Annette asks if they re ready to talk about what supports Eleanor will need. Carl wants to get everything arranged, but he suddenly feels breathless. The nurse tells him to rest, and Annette says she ll make some short-term arrangements and return the next day. The next day Carl is improved but worried about Eleanor. What if he can t care for her anymore? Will she have to live in a home? Annette reassures them both that she will work to get support for Eleanor that will enable her to stay at home and take the pressure off Carl. She explains what disability support and respite services do, and that she ll help Eleanor and Carl work out what they want and need, find some possible options and help them apply for funding if required. Knowing Carl wants to get things organised quickly, Annette focuses on finding short-term care options. Long-term support will require more work, and Annette begins explaining the process for accessing funding to them both. Annette takes Eleanor in twice more during Carl s 10-day stay. She offers to wait outside, but they insist she join them. As they talk, she finds out more about their life together. Since Eleanor finished school and Carl retired, they ve started enjoying their neighbourhood. They have lunch at the bowls club or a cafe every day, and know the shopkeepers well. Both love books and movies, and often go to the library and cinema. It seems Carl has had endless energy for pushing Eleanor s chair, and they both love chatting with everyone they meet. At the hospital they discuss options for ongoing personal assistance, a hoist and respite. We need to look after your health too, Carl, Annette says. Eleanor nods and squeezes her dad s hand. Annette outlines several options for respite and in-home support, including a paraplegic-specific service, which Carl and Eleanor choose. She also offers contacts for an ABI self-help group. It s also important you stay connected to your local community, she says. You know so many people. Who do you think might like to visit, and maybe even help out? Eleanor names Diane and Kim, and another neighbour. Carl names some family friends and a favourite librarian. Annette encourages them to ask for support, saying, You might be surprised at who says yes. The doctor comes in and is pleased to meet Annette. The reason we re discharging you is because Eleanor has supports in place, she tells Carl. And we need to make sure you have the care you need, so she doesn t end up looking after you! The nurse will explain our in-home nursing service, and the social worker will discuss other referrals. > Check if people are ready to receive information; reassure family members > Respond to concerns, offer information, explain your role and approach > Be sensitive to people s sense of urgency; help families with paperwork > Listen and ask questions to get a holistic understanding of the family and the context > Offer options in response to needs expressed; offer other appropriate ideas > Encourage the young person and family to maintain and draw on informal supports > People are often carers for older or unwell parents; put supports in place
16 PAGE 12 When she visits the family two months later, Annette finds that Carl s health has deteriorated. He has begun receiving a high level of services, and Eleanor s level of support is clearly inadequate. Annette talks to the family about increasing support, and together they fill in a Disability Support Register application over several visits. It takes eight months for the package to come through. In the meantime, Annette organises more home help through a program for older people, and helps Eleanor organise a meeting of neighbours and friends willing to help out more. There they make a roster for helping with shopping and other tasks, so that Eleanor can use her other supports for personal assistance. When the new package comes through, Graeme, a facilitator from another service, invites Annette to help develop Eleanor s plan. When they meet with Carl and Eleanor, both are focused on managing the current situation. Graeme encourages them to step back, and think about Eleanor s future. He asks: What do you love doing? What dreams or ambitions do you have? Eleanor finds it hard to say but eventually begins talking about her enjoyment of computers and playing keyboards, and her desire to write and perform her own music one day. Then he gently asks about Eleanor and Carl s hopes and fears. They slowly open up about their fears about Carl s health, and what Eleanor s choices might be if he dies or is hospitalised for long. They talk about possibilities for ongoing support now, what would be needed in a crisis, and what options Eleanor might want longer term. Then they talk about what supports they have around them in terms of family, friends and other networks. Graeme convenes a larger meeting, including Rob, Diane and Kim, and four other friends who have been helping out. Graeme encourages Eleanor and Carl to share their thoughts since last time, and writes the issues on a whiteboard: Eleanor s dreams, daily life, keeping Eleanor healthy, keeping Carl healthy, support if Carl goes to hospital, long-term planning for Eleanor. He asks everyone to think about what has been working for Eleanor and Carl in terms of their strengths and current supports and what hasn t. Together they determine a range of supports, funded and otherwise, that Eleanor and Carl will need in the coming year. Graeme and Annette research and canvass options with Eleanor and Carl. At the final meeting they decide on the plan, and each make commitments to the actions they will take. Given the state of Carl s health they then set six-monthly reviews. Eleanor and Carl ask Annette to manage their supports, which now include personal assistance, equipment, physiotherapy, occupational therapy, respite and support for Eleanor at TAFE. > Encourage people to manage their services within their capacity > Respond to changing circumstances; help with paperwork > If funded resources are inadequate or there is a wait for services, find other ways to meet the need, including informal supports > Use creative personcentred and familycentred tools to draw out needs and desires > Encourage people to set outcomes informed by long-term goals and needs > Sensitively support people to face fears, plan for crises and long-term needs > Draw on the expertise of the young person, family, partner, friends and other services > Reflect on problems, build on strengths, set review dates based on context
17 PAGE PRACTICES THAT BUILD RELATIONSHIPS I don t always stick to the assessment tool. A lot more comes out of that hour with a family than the tick a box. Active listening and really hearing are important, as opposed to asking questions. You need to do that but can often leave it to last. Intake and assessment worker We as parents are inspired when there is care shown to the siblings and other family members. There needs to be respect and understanding shown to all because therapists are not only working with the child with a disability but also the family. We seek out those therapists and services that do provide support to us all. Cass, mother of Abel (who has autism), Jack (who has a learning delay) and their sister, Julie Research demonstrates that open, trusting and collaborative relationships are key to supporting children, young people and families to adapt to the changes and challenges that disability brings to their lives. 21,22 Of course relationships are two-way, shaped as much by the experiences, behaviours and values of children and families as by those of professionals. People s prior experiences of services are critical. If these have been less than positive or not family centred, it can take time to build trust, optimism and a sense of partnership: Validating the parents past journey is very important the grief and the chaos that they ve had to deal with. I ve had clients say to me, You re case manager number eight. I d open at a blank page of my notebook to say, This is our new beginning. This is where we start together. But first I would give them time with the book closed to tell me what case managers one to seven did wrong. Case manager Your beliefs, attitudes and values We each bring our own beliefs, values and attitudes to every interaction we have with family, friends, colleagues and those we work with. We rarely state them aloud, but they shape everything we do. Family-centred practice asks professionals to demonstrate certain values, including that people can adapt to the challenges in their lives. This isn t always easy. Resources are limited; different systems offer different supports, and often have different eligibility criteria, access points and requirements. Some families are struggling with very complex issues so you need to strive not to judge. Families value highly professionals they don t feel judged by. Yet everyone makes judgements sometimes it s part of being human. What matters is what you do next: how aware you are, how you challenge yourself, and how this affects your interactions. It can be helpful to: > become more aware of your assumptions and values > reflect on situations that make you uncomfortable, and seek support to deal with them better > engage in regular reflective practice with your supervisor and team (see page 14) > challenge negative stories about families that can arise in a sometimes deficit-focused system > understand and value people s knowledge and experience, however expressed > practise engaging with people on their own terms. Professionals need to accept and work with people as they are and for who they are. This can be challenging sometimes, and does not, of course, mean that you should not take action if a child or young person s safety is at
18 PAGE 14 risk (see page 22). Nor does it mean that you cannot respectfully challenge families if you have strong concerns about the impact of their choices. Reflect on your values Our deepest values are shaped by a blend of our ethnicity, race, history, socioeconomic status, ability, location, language, beliefs, values, education, lifestyle, politics, family make-up, gender, sexual orientation and spirituality. Mostly, our values are invisible to us. We grew up with them and they shape our daily lives. Often we take them for granted. Sometimes we also take for granted that our values and our ways of doing things, are normal. But every person and family has their own history, values and ways of doing things. Professionals need to be sensitive to this in their work with every family, of course, but especially those from minority communities, including Aboriginal, CALD and same-sex parented families. Family-centred practice asks you to reflect on your values and how they differ from others. By doing so, you can ensure that you don t impose your values on the families you work with. Be aware of the subtle power of stereotypes, and remember that all cultures (including the dominant one) are complex, and change over time; all cultures have strengths and problems, and everyone has their own relationship to cultural norms. Understand and share power Family-centred practice requires a shift from the power over relationships that often characterised traditional, medical model approaches to power with relationships of collaboration, information and resource sharing. 23 Professionals should also work towards power through relationships, where young people, families and organisations come together to create new resources or approaches that increase everyone s skills, capacities and resources, and benefit the wider community. 24 The dynamics between professionals and the people they work with are, of course, shaped by broader power structures and family stressors. These include lack of access to education, financial resources and support networks. 25 Prior experiences can also have a profound effect. Most Aboriginal families include at least one member of the Stolen Generations, for example. Service systems in many migrant families countries of origin might be very different from those in Victoria. Aboriginal and CALD communities also continue to experience high levels of discrimination, including from service providers. 26 Although this is more often subtle than blatant, it can result in children, young people and families feeling uncomfortable and alienated. Interpersonal behaviour Interpersonal qualities like warmth and empathy are fundamental, but other interpersonal skills are also important: > Skilled listening builds trust and helps you gather information to plan effective supports together. It is also important to hear what isn t being said. 27 > Sharing your observation of what you are learning about the child or young person and family (particularly their strengths and capacity to meet their own needs) helps build selfefficacy (see page 20). > Sensitive communication in relation to the child or young person s development gives families both accurate information and a sense of hope. The first messages that families receive from services are powerful, and can shape their journey for years.
19 PAGE 15 > Acknowledging the needs of parents, caregivers and siblings (and referring to help meet those needs) demonstrates understanding of the family. > Engaging directly with children demonstrates respect for their right to have a say and helps build a relationship with them and their family. People do not need to be verbal to communicate. It is about getting to know them and how they express needs and preferences. Resources are available to help communicate with people with a disability. 28 > Asking the right questions, openended or specific, helps to elicit meaningful information. What would you like to work on? can be daunting, especially early on. You can get people talking in different ways: Ask about an area of family life ( How are you all sleeping? or Are any routines changing? ), or respectfully observe their behaviour or mood. Some people find it easier to start with what hasn t been working for them. Gathering relevant information and observation will help you determine the most relevant questions to ask. > Making space for the whole story enables people to feel heard and builds a more complete picture of their needs. Sometimes, of course, people won t want to tell their story yet again. Services can help by sharing information, with permission. > Tuning in to non-verbal signals can enhance communication. Remember that body language is not universal, but has diverse cultural meanings. Discuss with colleagues or reflect on non-verbal cues to be sensitive when working with different communities, and ask the family if you are unsure. Above all, authenticity is critical. Research has found that families know when professionals are insincere in expressing caring or empathy. 29 They appreciate warmth and interest, but only when it is genuine. Support people to make informed decisions Informed decision making requires families to consider their own needs and preferences and the relevant information. For the latter they often rely on you. Some professionals see family-centred practice as simply doing what families want, and are unsure if they can offer input. If it is clear that a family is unaware of information or ideas that might assist them, ensure you have the information and offer it to them in an appropriate form. Any suggestions should arise from a deep understanding of and reflection on the family s needs, priorities and concerns. Such suggestions should be conveyed as options and delivered in a way that empowers the family to make their own decisions freely and in their own time. The following can be helpful: > Check what information the family and young person think they might want, and when. Information overload is common. If people don t have a lot of information, it might be helpful to describe the kinds of things you could tell them, and ask which would be helpful. > Ask about what they already know. You can then avoid patronising them. Address misconceptions, engage with their beliefs, and use language they can relate to. > Check if you are being clear, and if they want more information.
20 PAGE 16 > Ask families how they prefer to receive information. Some people like verbal explanations, others prefer diagrams, role-plays, discussion or problem solving. > Use plain language, avoid unnecessary jargon, and help families decode the terms and acronyms they need to know to navigate the system. Information and support that young people and families might find useful to aid decision making include: > current accessible information about disabilities and developmental delays, supports and services, including research > assistance in weighing up the risks and benefits of different options > leaving written information with people to reflect on after your meeting > assistance in making sense of conflicting information > information about what might be ahead for them, and what choices they might want then > how to link with other families for support and information sharing. Collect good-quality, plain language information resources on important or common topics for families. You might find these online or develop them with input from families and young people. A plain language explanation of your organisation and role, and how they fit into the service system, would also benefit many. Offer and use interpreters skilfully Always ask people with limited English if they would prefer to use an interpreter. This enables you to communicate better, and is critical to accurately understanding families context, needs and choices. Always use professional interpreters (NAATI levels 2 3), never family or friends. This ensures accurate interpreting; that family members are not put under undue pressure; and that confidentiality and impartiality are not breached (possibly exposing your agency to legal risk). It also ensures family and friends are able to participate fully in the discussion. Keep people in the loop, stay in touch Communication and follow-through are key issues for families and young people. Issues you might need to discuss regularly with families include: > how changes in circumstances (such as the child s age, development stage or medical needs, or family income or employment status) might affect the services available to them > relevant changes in your role or availability (including leave), organisation, sector, policies or funding, or in the services you are coordinating on their behalf > new potential sources of support, and financial information such as the hours of service remaining in a given funding period. Another common complaint of families is when professionals become less communicative, such as if there is a delay in funding becoming available, or if funding applications have been unsuccessful. It is especially important to maintain communication during these times, and work in partnership with families to find other ways to meet expressed needs.