1 social work 46now NOVEMBER 2010 Te Hautaka ako te Tari Äwhina i te Tamaiti, te Rangatahi, tae atu ki te Whänau The Practice Journal of Child, Youth and Family
2 contents 1 Editorial 3 A good life for disabled people Ruth Jones 9 Seeking and establishing the views of disabled children and young people: A literature review Megan Chapman 19 Social justice, the social model and disability policy in Aotearoa New Zealand Hilary Stace 25 The right of people with disabilities to be parents Margaret Thomson, Megan Chapman and Pete Carter 29 Fostering children with disabilities Jason Brown 36 The Windmill Programme: Thinking outside the square Graeme Pearson, Angela Olsen, Anna van der Water, Ron Fogel and Clare Jenkins 41 Information for contributors 43 Social Work Now Aims social work now 46 NOVEMBER 2010 The stone that features on the cover was created by a young person at one of our care and protection residences. Social Work Now is published three times a year by Child, Youth and Family. Views expressed in the journal are not necessarily those of Child, Youth and Family. Material may be reprinted in other publications only with prior written permission and provided the material is used in context and credited to Social Work Now.
3 editorial Disability the new paradigm It is important to look at the paradigm shift that has been signalled in terms of service provision and, policy development for disabled people. Yes, paradigm shift did become the buzz word of the 90 s with a risk of being so overused that it became meaningless. However events in the international disability community have been responsible for a significant paradigm shift, with the UN Convention on the Rights of People with Disabilities. For the first time in the international arena, government delegations involved disabled people and worked closely with the civil society. There is an ongoing expectation from disabled people, that they and their organisations will continue to be involved in policy and service development throughout the whole process rather than simply in the consultation phase. As Ruth Jones indicates in her article, the United Nations Convention is very much seen by the disability community as their Treaty, that defines a radical change in the way disability is perceived and the assumptions implicit in the systems and social constructs that support disabled people to lead an everyday life. The United Nations Convention has driven some significant change in thinking. This centres on its statement that persons with disabilities should enjoy legal capacity on an equal basis with others in all aspects of life, and that all appropriate measures should be taken to provide access by disabled people to support required to exercise this legal capacity. This embodies the spirit of the Convention because it challenges much of the traditional attitude to disabled people and was driven very much by disabled people. Putting this into practice so that it is real and not tokenism will be one of the greatest challenges for practitioners The ability to lead an everyday life and have the same goals and aspirations as every other citizen starts at the beginning of a young person s life and very much depends on the support that the family receives and the attitudes towards and of the young person. In her article, Megan SOCIAL WORK NOW: NOVEMBER 2010 Chapman raises the important issue of how practitioners include disabled children in the discussions that impact on their lives. Again, this requires a paradigm shift which questions traditionally held values about the contribution that disabled children can make. The article highlights important practice tips to show practitioners how disabled children can make valued contributions. As Hilary Stace discusses in her paper, the paradigm shift is based on important strategic tools including the New Zealand Disability Strategy which reflects the social model of disability. Students involved in mainstream education have, as Hilary states, been the agents transforming our schools into inclusive communities. Often we wonder why disabled people, especially people with intellectual disabilities, lack the skills to be effective parents, when society has always assumed they will never be parents and so has never provided them with any role models or access to information. However, what is being found is that with the right support, disabled people make wonderful parents. Crucial in identifying that support, as Margaret Thomson, Megan Chapman and Pete Carter state in their paper on the right to be a parent, is to start from the assumption that disabled people have a right to be a parent and that the parents must be involved in any discussion and decision making around the support required. Too often in the area of policy and service development for disabled people, the solution is special. The United Nations Convention is based on mainstream service and policy development and an examination and resolution of the barriers that exist for disabled people in mainstream service. Support can then be provided on an individual basis to make the mainstream service work. It is this challenge that Jason Brown talks about in his paper on fostering children with disabilities. 1 Disability a new way of thinking
4 Until service provision generally catches up with the paradigm shift and operationalises what it means, there will still be needs that are not met by mainstream services. The article on the Windmill programme describes an example of an interim response. In closing, one of the greatest barriers to the paradigm shift embodied in UN Convention is paradigm paralysis the inability or refusal to see beyond the current models of thinking. Hilary Stace highlights this point, noting that while we have a changed paradigm, service provision remains locked into the medical model. It is important that practitioners examine the current assumptions and the implications to your practice of the paradigm shift. Anne Hawker Principal Disability Adviser, Ministry of Social Development World President, Rehabilitation International 2 SOCIAL WORK NOW: NOVEMBER 2010
5 A good life for disabled people Ruth Jones Disability a new way of thinking Aimee is in her first year of a Bachelor of Social Work at the Christchurch Polytechnic Institute of Technology (CPIT). Aimee is one of a new generation of social workers who, in less than three years, will be working with some of New Zealand s most vulnerable communities. Prior to this course, Aimee completed a Certificate in Social Services at CPIT. Twenty years ago, I too trained as a social worker. I studied at the University of Canterbury and completed a Post-Graduate Diploma in Social Work, followed several years later with a Bachelor of Arts with Honours in Social Work. In 1999 I became a tutor for the foundation Certificate in Social Services and was proud to be teaching people like Aimee. My husband Gary and I are disabled people. Aimee is also one of our support workers. She arrives at our house at 7 o clock several mornings a week and supports us to get ready for our day. Aimee s role includes showering us both, shaving Gary, supporting him to eat his breakfast, and other household tasks. Aimee does this work quickly and efficiently. She undertakes these tasks with a dignity and grace we admire. Aimee chats about her day and very often the night before! She works with us as people, not seeing us as diagnoses or conditions. Aimee, Gary and I share a portion of our lives. We believe Aimee will be a better social worker because of it. The values that Aimee demonstrates are those that uphold the rights rather than the needs of people. These values are inherent in the United Nations Convention on the Rights of Persons with Disabilities. This legally binding document was signed by New Zealand in 2007 and ratified by our government the following year. It is important human rights legislation that shifts the paradigm from welfare to citizenship. Its effectiveness will be monitored by both the New Zealand Government and disabled people. The Convention is viewed by disabled people as our Treaty. It was necessitated by the fact that although disabled people theoretically had rights under existing international human rights laws because we are human beings, in all countries these rights were being denied to us, in varying degrees. The Convention does not create new rights for disabled people. It sets out how existing rights must be accorded to us, for example, the right to education for a deaf person is meaningless if they are not taught in a manner they can understand, such as sign language. As a community, we are proud that the Convention reinforces messages that are fundamental to us leading valued lives. The Convention s third article, for example, highlights the principles of dignity, individual autonomy and equality of opportunity. This article does not mention needs-based assessment or respite care issues so often associated with disabled people and disability support. It instead touches the core of what matters to us the right to be. New Zealand led the development of the Convention and Gary, as the then CEO of the Disabled Persons Assembly, spent weeks in New York advising our Government about its content and the nuances of wording. I now look forward to the social work profession celebrating this document with the disabled persons community and supporting its implementation. Social workers will be ultimately successful in partnering with disabled people and their families if they believe in two things: the rights of disabled people as citizens of New Zealand 3
6 the simple need to have a right relationship between themselves and us. In this context, a right relationship is a relationship that is based on trust and honesty, where both parties are respected and given equal value. A right relationship is about actively sharing power and striving to do this at individual, community and systemic levels. (People First New Zealand, 2010) Defining disabled people The Convention does not explicitly define the term disabled people, but states that they include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others (United Nations, 2007). You will note that I use the term disabled. I am referring to the group of people who are disabled by attitudes, environmental barriers and an endless lack of access rather than anything inherent in any individual with impairments. Disabled people are one of the most marginalised groups in New Zealand. A large number of us are unemployed. Research tells us that disabled students are less likely to get a qualification compared to their non-disabled peers. However, if they are qualified they are as likely to get a job as a non-disabled person who has no qualification. Sixty percent of disabled people earn $15,000 or less per year and are therefore incredibly disadvantaged economically and socially (Cleland & Smith: 2010). The World Bank estimates it costs the global economy between $US1.3 and 1.9 trillion a year to exclude disabled people. For New Zealand, it s estimated to cost our economy about $NZ10 billion a year (http:siteresources.worldbank.org). Disabled people are abused and experience violence anywhere between 2 18% more than non-disabled people. Overseas research indicates that up to 90% of people with intellectual impairment are sexually assaulted before they reach the age of 21. There is little research or data collection within New Zealand. However there is a lot of anecdotal information shared within the disabled community, and stories of disabled women who remain in situations of risk every day because there are no alternatives (The Disability Coalition against Violence: 2010). Disabled people also experience, and are impacted by, issues that can affect every other New Zealander, like alcoholism and drug abuse. The issues we face are sometimes connected to our impairment, sometimes they are issues that are common to everyone but often occur to us because of what society teaches us. Disabled people and a good life Like everyone else, disabled people want to lead a good life, starting in childhood. We know that children can succeed if they are at the centre of a loving supportive family, and remain in the family unit as they grow and develop. The pä harakeke model is a poignant illustration of how the rito or centre of the flax bush is protected by the matua, parent fronds. Families work well when they are supported by their hapü, aiga, neighbourhood and friends who can nurture them as a unit. When the system is disrupted so too are the support structures. It is important that social workers do their utmost to ensure that parents and caregivers have the resources and assistance they need to care for children with disabilities. Disabled children should have a home for life like every other child. It is vital that our disabled children remain within a family. They have the same right to grow and develop within a whānau environment as every other New Zealand child. People are more likely to thrive when they are surrounded by those who love them, rather than paid staff. A good life is about growing up in a family and doing activities alongside your mum, dad, brothers and sisters. It is about attending your 4 SOCIAL WORK NOW: NOVEMBER 2010
7 local school and having friends that you hang out with during the weekends. It is about knowing your neighbours and having people who watch out for you. In reality, disabled people are often socially isolated and have limited personal relationships. As children we are often ferried across town in a taxi to a completely different school to our brothers and sisters. We do not have the opportunity to walk to school with mum and our mates and participate in the day-to-day routine associated with this simple act. Being part of community life means that you know who lives where and who has your best interests at heart. In New Zealand today there are a number of disabled people over the age of fifty who were institutionalised for many years. They have now returned to the community with little or no family connection and limited resources both internal and external to build relationships. Having a good life is about having responsibilities alongside having rights. It is about parents being supported to have similar expectations of their disabled child compared to their nondisabled children. Parents who are encouraged to have these expectations also dream and build aspirations for their children that they instinctively pass on. Disabled children then have aspirations for themselves and have the mandate to make choices and decisions about their life and what they want to achieve. Children learn how to make choices when they are given experiences and are allowed to take risks. Let s remember that they will be adults for longer than they will be children. There is a general expectation in New Zealand that individuals and families at some stage in their lives have a place of our own a home, whether it is rented or owned, that we identify as our sanctuary and a place where we can be who we want to be. This is another part of having a good life. Too many disabled people still do not have this. Disabled people, especially those with intellectual impairment, live in group situations with people who they do not necessarily choose to be with. Disabled people are often placed together according to their level of care need, rather than their friends. This can alienate people, and force them to live in unhappy and sometimes unsafe situations. This doesn t need to be the case. If disabled people had more choices about how and where they lived, they could have more sustainable relationships. People thrive when they are supported to follow the natural rhythm of life. This includes leaving school at 18 years of age rather than at 21, when many disabled people leave school. It also includes leaving home as a young adult and having the ability to live in a variety of places and have a range of experiences with peers. Currently in New Zealand a disabled person is allowed only one State-funded renovation to a bathroom to increase access in their lifetime. A rhythm of life also means that you get out of bed in the morning, and you can go to bed at about the same time that other people do. This means that you get to enjoy going to the gym, lunch with friends, the cinema and watching your regular TV favourites. This does not mean that you get helped into bed at 6.00pm because that is the expected timeframe of the care agency. Again, we all make decisions that in hindsight should not have been made. This is a natural way of learning, and we often get it right after several attempts. Disabled people and especially young disabled people are not always encouraged to make choices and decisions and therefore as we grow are less likely to have the confidence or ability to do so. If we make a mistake it is frequently something we are not encouraged to attempt again. Whatever learnings we gain from these experiences are quickly forgotten. Without these experiences we continue to be passive recipients of services and do not contribute fully to the fabric of the community. Disability a new way of thinking 5
8 6 We strive to do the same things as other people and sometimes to achieve the same outcome by reaching it in a different way. We need disability support to achieve a good and regular life. We need a framework flexible enough to respond to our individual needs and aspirations. We need a system that honours and trusts the way we do things but also acknowledges the workers who support us. This acknowledgement comes from paying people well and organising the funding and systems so that disabled people and their families remain close to the power and participate in how the funding is allocated. Support workers and disabled people are more likely to develop strong and sustainable relationships when they have two things: employment security, and a direct relationship between the worker and the disabled person. It has been proven overseas that in systems like Local Area Co-ordination, disabled people under-spend their allocated funding if they are mandated to use it in flexible and responsive ways that meet their day-to-day needs. Social work practice If you are a social worker, your training probably has not prepared you for working with people who face barriers daily. While the theory might be good in theory, the reality can be quite different. Disabled people have an abundance of other people in their lives who are paid to be there. Let s make sure that as a social worker you add value to a disabled person s life. Please start by coming to a relationship with us with a positive frame of reference. Disabled people are not disabled or limited necessarily by our impairment. We are disabled by attitudes, access and the assumptions that people make about us. We are contributing members of society, loyal family members, great partners and anything that we choose to be. Let the United Nations Convention on the Rights of Persons with Disabilities be your guide. If you are working with families of young children who have disabilities, please initiate SOCIAL WORK NOW: NOVEMBER 2010 conversations that make a difference. It is a reality that parents grieve for what they have lost. A poem written by the mother of a disabled child talks about comparing the arrival of her disabled daughter to preparing for an exciting holiday in Italy but arriving in Holland. Parents are often not prepared for the challenges that come with disability, but often find that there are gifts and unexpected rewards along the way. Encourage parents to dream and have aspirations for their child and acknowledge that the journey will be hard but they will have the support and resources to help along the way. Introduce them to other parents of disabled children, because it is these people who will provide the perspective that no one else can and the longstanding support that can be much more effective than a social work intervention. Know that when you enter into a working relationship with a disabled person and their family we are not a specific client group. We live next door to you. We attend school along with your own children. We can also sit alongside you in the workplace. We are part of the community, and we are part of your community as well. Do not put on a social work face when you meet us. Let your behaviour be congruous wherever you go. You are not that different from us. We often need people to fight alongside us. Our physical environment may not be accessible. Attitudes may need changing and advocacy may be the most important tool to use. We need people to be strong and to encourage us to be strong. We need to learn how to fight, advocate for ourselves and to get up and fight again if the first time does not work. It is a different type of social work when you strive to change the hearts and minds of the community rather than the individual. It is work based on principles of social justice and equity. It is not about initiating a behaviour programme but about encouraging behaviour change. It is not about doing for but doing with. When people work together on a cause everyone has a vested interest to achieve good outcomes. The fight is a joint one and the rewards are shared and celebrated.
9 A good life is a life that is sometimes planned and sometimes not. Disabled people like everybody else fall into relationships and get to experience unexpected successes and dilemmas as we journey through life. I know that I have met people who have surprised me and themselves as they have provided support and guidance. Be the social worker who doesn t write a plan for us but encourages us to think ahead. Be the person who seeks options with us rather than decides on solutions because that is the easiest option. Be uncertain with us at times when we do not know what to do because that is how life is. Let yourself experience uncertainty too because you will be respected for that. If given the opportunity, disabled people learn how to deal with difficult situations. Trust us and let us guide you for a while, maybe the destination will be different from what we started out thinking it would be, but what we learn along the way will be the ultimate reward. Conclusion Aimee is one of the people sharing the journey with us. I am sure she will be a successful social worker, and I also have great faith that she will be a person who will make a difference in the lives of those she encounters. She also has a new awareness of people and will make sure that the path that she travels is accessible to others. Disability a new way of thinking Welcome to Holland by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It s like this When you re going to have a baby, it s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans the Colosseum; Michelangel s David; the gondolas in Venice. You may learn some handy phrases in Italian. It s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, Welcome to Holland. Holland?!? you say. What do you mean Holland?? I signed up for Italy! I m supposed to be in Italy. All my life I ve dreamed of going to Italy. But there s been a change in the flight plan. They ve landed in Holland and there you must stay. The important thing is that they haven t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It s just a different place. It s slower-paced than Italy, less flashy than Italy. But after you ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they re all bragging about what a wonderful time they had there. And for the rest of your life, you will say Yes, that s where I was supposed to go. That s what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn t get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author. 7
10 References Cleland, G., & Smith, A. (2010). Journey to Work: Creating Pathways for Young Disabled People in New Zealand. Wellington: CCS Disability Action, Workbridge, Creative Solutions. resources/sp-discussion-papers/disability-dp/0007.pdf People First New Zealand. (2010). A place of our own living within the legacy of institutionalisation. Wellington. United Nations (2007) Convention on the Rights of Persons with Disabilities. New York: United Nations. Available from: un-convention/index.html#furtherinformationandresour ces10 The Disability Coalition against Violence Discussion Document to the Taskforce for action on violence within families (2010) Wellington: Unpublished Ruth Jones lives with her husband Gary in Christchurch and both are busy working to achieve social change for disabled people with their business Kanohi ki te Kanohi Consultancy. Aimee has completed her first year of a social work degree at CPIT. She was one of the first to text Ruth and Gary following the September earthquake. 8 SOCIAL WORK NOW: NOVEMBER 2010
11 Seeking and establishing the views of disabled children and young people: A literature review Megan Chapman Disability a new way of thinking Listening to children s voices and accessing their views about service provision in the education, health, social services and legal disciplines has received increasing international and national focus (Lewis, 2004). Establishing the views and consent of children and young people is a fundamental aspect of child protection social work whereby children s safety relies on their being listened to and involved in decisions about their own lives (Franklin & Sloper, 2007). Much legislation around the world now emphasises the importance of seeking and utilising children and young people s opinions (Morris, 2002). New Zealand has legislative, policy and practice requirements to this effect, as well as obligations through international and local instruments such as the United Nations Convention on the Rights of the Child (UNCROC) and the New Zealand Disability Strategy. Despite these requirements and obligations, international and local research has demonstrated that disabled children have been largely excluded from consultation and involvement in decisions that affect them (Rabiee, Sloper, & Beresford, 2005). In particular, social workers communication with disabled children and young people has been identified as problematic, as social workers often assume some disabled children or young people cannot communicate as a result of their impairment (Kelly, 2005). This article reviews the literature since 2000 on communication and participation with disabled children and young people within the context of current disability theory. Based on the literature, a set of practice tips regarding facilitating participation and communication with disabled children and young people is included at the end of this article. Findings Communication and participation? Communication and participation are necessary to seek and establish the views of a person with whom we are working. Communication occurs in a variety of ways, but in essence is a social process, in which a sense of meaning, a rapport or understanding, and a relationship develop between people who are communicating with each other (Westcott & Cross, 1996, p. 83). Language, including verbal, written, or pictorial, is one way of communicating. Other non-verbal methods include tone of voice, body language, facial expressions and laughing and crying (Morris, 2002). By comparison, the term participation is a multi-layered concept that can mean taking part, being present, being consulted or a transfer of power where the participant s views have influence on decisions (Franklin & Sloper, 2007). Genuine participation is based on informed consent and requires that children and young people are given full and accessible information about the decisions to be made and/or the participation activity (Franklin & Sloper, 2007, p. 9). Franklin and Sloper (2007) believe there are different levels of participation and for some children with cognitive impairments it must be seen as valid for participation to include choosing between two different options. 9
12 Fundamental to achieving the overall aim of participation is therefore to develop communication methods, which can maximise children s communication potential to express themselves and address the barriers they face. The other key component for effective participation is to recognise the fact that communication is a two way process requiring others to learn and understand how a child expresses herself/himself. (Rabiee et al, 2005, p. 386) Children s participation has become an important consideration within legislation Up until the late 20th century, children were regarded as part of their parents property and had few or no rights (Rowse, 2007). However, a recent international shift has recognised children s ability and right to participate, express views and make decisions about their own lives, including children who were previously seen as unable to form a valid view, for example disabled children (Ware, 2004). This shift is likely to have been influenced by the deinstitutionalisation, independent living and consumer advocacy movements (Strock-Lynskey & Keller, 2007). Policy, practice and research have begun to reflect this change (Ware, 2004), particularly in the United Kingdom where children s participation in decision-making has become common within children s service sector legislation (Lewis, 2004). The UNCROC has been important in raising the political profile of children s rights (Mortimer, 2004) and holding governments to account for recognising and meeting children s needs (Rowse, 2007; Willow, 2002). Underlying UNCROC is an assumption that being heard as service users is a reasonable goal for all children and that barriers can be overcome (Lewis, Newton & Vials, 2008). Despite a dearth of New Zealand literature, Kelly (2003, 2005) highlights the importance of the New Zealand Disability Strategy, which she believes uniquely recognises the needs and rights of disabled children. Underpinning theoretical perspectives The social model of disability was the dominant theoretical framework evidenced in the literature. As an effective and empowering way of working with disabled children and their families (Griffiths, 2002; Wilson, 2004), this model has become widely accepted and promoted across the world and in New Zealand (Kelly, 2005). The social model of disability argues that the experience of disability is essentially a reflection of the existence of social obstacles and that if society were organised differently... many people would be able to manage their lives quite successfully without experiencing constant frustration and discrimination (Connolly & Ward 2008, p. 97). Therefore, while impairment is part of the individual, he or she is further disabled by social and attitudinal barriers (Wilson, 2004). By contrast, the traditional medical or individual model of disability locates the problem of disability within the individual and sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability (Oliver, 1996, p. 32). Social work practice based on this model is oppressive (Griffiths, 2002). It promotes deficit-based thinking about disability and impairment whereby children are defined by what they cannot do, rather than what they can (Rabiee et al, 2005). This can lead to exclusion, as Kelly (2003) found with some social workers who excluded disabled children from review meetings because they assumed they either could not participate or they would be disruptive. Griffiths (2002) and Wilson (2004) suggest the social model of disability is more effective and empowering because children and young people can be assisted to identify and overcome the personal and social barriers they face. Several authors also framed their discussion within a human rights discourse (Buchanan & Gunn, 2007; Burke & Cigno, 2000; Morris, 2001; Watson, Abbott, & Townsley, 2007), asserting 10 SOCIAL WORK NOW: NOVEMBER 2010
13 that failing to ascertain the views of disabled children or ensure their participation in decisions affecting them was a denial of their fundamental human rights. Disabled children are less likely to have their views established Despite moves to ensure children and young people are involved in decisions about their welfare, the literature shows that disabled children continue to be less likely than other groups of children to participate (Preece, 2002; Stalker & Connors, 2003), have their voice heard (Wilson, 2004) and as a result they have been largely excluded from consultations and involvement in decisions affecting them (Rabiee et al, 2005). Stalker and Connors (2003) suggest many social workers avoid seeking children s views because they assume they are too young or too disabled to express them, and they put little effort into finding alternative methods of communication. As Rowse (2007, p. 74) states, for a disabled child it is less likely that their views will be sought. Participation and consultation tend to occur more commonly with those who present fewer challenges to the process, such as those with physical and/or sensory impairments (Preece, 2002). Researchers found that the voices of those with profound and complex learning difficulties (Whitehurst, 2006), intellectually disabled children (Kelly, 2003), and those with a communication and/or cognitive impairment (Morris, 2001, 2003; Rabiee et al, 2005) remain largely silent. A child or young person s age also influences whether or not consultation occurs. Franklin and Sloper (2007, p. 118) identified that participation at any level is only a reality for a small number of disabled children and young people, and that the majority of those who are participating are from the older age range. Preece (2002) and Mortimer (2004) similarly found studies more commonly focus on teenagers than on younger children. The field of social work has been criticised for the lack of consultation with disabled children. Social workers generally feel they lack the necessary skills or experience to communicate with this client group (Buchanan & Gunn, 2007; Griffiths, 2002; Kelly, 2005). It is acknowledged that the pressures on social workers are great, but lack of time or the excuse that it is too difficult are not good enough reasons for not consulting with disabled children (Griffiths, 2002, pp ). The literature suggests that the growth of participation of disabled children appears to be slower than that of non-disabled children and that further emphasis is needed to develop ways of listening to all disabled children (Franklin & Sloper, 2006; Monteith & Cousins, 2000). Disabled children can express views The literature demonstrated that communication and participation with disabled children and young people can elicit valuable insight across a variety of subjects. 1 Many of these studies described how children s views were obtained, and advocated for including children and young people in designing the research, for example Kelly s (2003) research encouraged children to decide how the research visit would proceed and what activities they would engage in. The children and young people involved in these studies also had a range of impairments demonstrating that participation was possible with a vast array of different impairment types, including for example communication and cognitive impairments, autism spectrum disorder, multi-sensory impairment, complex health care/ medical needs, learning impairments, intellectual impairments and those with high levels of support needs (Morris, 2001). 1 For instance sexual abuse (Oosterhoorn & Kendrick, 2001), recreational activities (Davis & Watson, 2002), schooling and educational experiences (Davis & Watson, 2002; Lewis, Newton & Vials, 2008; Wilson, 2004), educational and transition planning (Taylor, 2007), outcomes of social care and support services (Rabiee, Sloper & Beresford, 2005), family-support services (Kelly, 2003, 2005), multi-agency services (Watson, Abbott & Townsley, 2007), social service provision (Buchanan & Gunn, 2007), medical treatment (Rowse, 2007), short-term residential care (Preece, 2002), experiences of inclusion (Whitehurst, 2006), social exclusion (Morris, 2001), the impact of disability on everyday lives (Stalker & Connors, 2003), general experiences, wishes and feelings (Morris, 2003), and participation in decisionmaking (Franklin & Sloper, 2006, 2007; Davis, 2007). Disability a new way of thinking 11
14 12 Several studies found that eliciting disabled children s views was difficult, time consuming, and required resources, greater planning, and a willingness to try a range of approaches (Taylor, 2007; Watson et al, 2007; Whitehurst, 2006). But despite greater effort required on the part of professionals, the research suggests that disabled children can articulate their views and should be involved in making decisions about services they use (Kelly, 2003). As Mortimer (2004, p. 174) stated, when words and voices are not available, for whatever reason, practitioners need to find ways of listening to children s behaviours and emotional expressions, observing their natural preferences and discovering their individual strengths. Ware (2004) was alone among the articles reviewed in asserting that the views of some groups may not be attainable. Ware cautioned that some children with high level or multiple impairments could receive a large degree of inference from both professionals and families interpreting their behaviours and reactions. Disabled children and young people value participation and they have a valuable contribution As well as having the ability to communicate, research shows that disabled children and young people also have a great willingness to communicate their feelings and experiences and be involved in the process of change (Morris, 2001; Rabiee et al, 2005). When participation occurred, Franklin and Sloper (2007) found that children, young people, parents and professionals viewed it very positively. Children s increased participation provides more effective programme design and service delivery (Davis, 2007; Mortimer, 2004). Buchanan and Gunn (2007, p. 154) suggested that by getting involved, children can contribute to the improvement of services by representing their diverse and changing needs and bringing about better informed decisions. Franklin and Sloper (2007) found examples of disabled young people s SOCIAL WORK NOW: NOVEMBER 2010 voices directly influencing service provision and decisions made within their reviews. Children who were able to participate also expressed feeling listened to, valued and empowered, and were able to gain confidence, self-esteem and learn new communication and collaboration skills (Buchanan & Gunn, 2007; Franklin & Sloper, 2007). Recommendations for enhancing participation Recommendations to assist professionals in enhancing the communication and participation of disabled children and young people emerged from this literature. Advocacy services Cavet and Sloper (2004) suggested advocacy was one way of facilitating the involvement of disabled children and young people. Advocacy enables people to speak for themselves with support or to have their voice heard through an advocate (Buchanan & Gunn, 2007). Advocacy as a vehicle to promote the empowerment of disabled service users has become increasingly accepted and is widely available in the United Kingdom (Franklin & Sloper, 2006). Staff training and ongoing development Increased training and ongoing staff development to promote participation was commonly recommended. The onus lies on professionals to develop and utilise a greater variety of ways to communicate (Rowse, 2007; Westcott & Cross, 1996) and to listen to disabled children and young people (Monteith & Cousins, 2000). Franklin and Sloper (2007) found that children in out-ofhome placements particularly needed access to professionals who understood them and provided them with opportunities to express their views. However, social workers identified that they did not have the necessary skills or confidence for consulting disabled children (Kelly, 2003; Stalker & Connors, 2003) and training was rarely prioritised by managers (Stalker & Connors, 2003). Recommendations for training included: general issues on participation (Franklin & Sloper, 2007),
15 inclusion and anti-disablist practice (Griffiths, 2002; Kelly, 2003; Burke & Cigno, 2000), supporting personal growth and development of disabled children and the social model of disability (Willow, 2002), disabled children s right and advocacy (Kelly, 2003), effect of personal attitudes and values on the participation process (Franklin & Sloper, 2007), sign systems and alternative communication techniques (Kelly, 2003), interpreting and presenting children s responses and successfully using interpreters (Franklin & Sloper, 2007). Franklin and Sloper (2007) additionally recommend that any training should be ongoing and cyclical to accommodate staff turnover, staff development and changing needs such as new caseloads for social workers. Development of organisational systems and structures As Franklin and Sloper (2006, p. 726) state, meaningful participation must be seen as a process, not simply an isolated activity or event. Non-disabling organisational structures and systems are needed to promote the participation process (Cavet & Sloper, 2004; Griffiths, 2002). Buchanan and Gunn (2007) and Griffiths (2002) discussed the pressures of child protection work and demanding organisational requirements that impair social workers ability to uphold their clients human rights to participation. As mentioned, communicating effectively with disabled children takes more time and requires caseload management that allows staff time to develop relationships with children and families and to communicate effectively with other professionals and agencies (Edwards, Vaughn, & Smith Rotabi, 2005; Franklin & Sloper, 2007; Kelly, 2003). Services need to be well resourced and funded. Edwards et al (2005) argued for better funding for qualified and impartial sign language interpreters and Franklin and Sloper (2006, 2007) argued more resources were needed to monitor and develop a wider range of participation with disabled children. The literature also recommended improved organisational structures, including clear protocols and policies to ensure professionals and agencies consulted with disabled children (Kelly, 2003) and recorded the preferred communication methods of children and young people on case files (Franklin & Sloper, 2007). Community partnerships Multi-disciplinary, interagency working within the community and partnership with other organisations were also recommended (Burke & Cigno, 2000; Franklin & Sloper, 2007; Kelly, 2003). The benefits of partnership include shared expertise, ideas and funding and information sharing (Kelly, 2003; Franklin & Sloper, 2007). Kelly (2003) further recommended joint training between professionals and agencies to ensure that services work collaboratively together. Information and support for disabled children and their families Franklin and Sloper (2006) asserted that greater participation requires children and young people to have more support and information about decision-making processes. Involvement in decision-making becomes more meaningful if children and parents are well informed (Cavet & Sloper, 2004, p. 285). Franklin and Sloper s (2006) suggested the most likely forms of support to children and young people were assistance with communication, transport and access to venues. The need to foster positive self-identity, selfesteem and confidence in disabled children was also discussed as a way of encouraging greater participation (Franklin & Sloper, 2006; Westcott & Cross, 1996). Theoretical considerations Two key theoretical perspectives the social model of disability and a human rights discourse dominated the literature advocating for greater participation. The social model of disability offers an approach that mitigates the various barriers and social obstacles that hinder disabled children from participation and consultation. Some of the examples of barriers highlighted in the literature Disability a new way of thinking 13
16 included social exclusion, prejudice and discrimination (Franklin & Sloper, 2006), systemic barriers relating to service provision (Woodcock & Tregaskis, 2008), and social and material barriers (Stalker & Connors, 2003). Morris (2003) and Rabiee et al (2005) found specific barriers and negative attitudes during their research, including adults acting as gatekeepers for children, often citing the children s inability to communicate as a rationale for not agreeing to interviews. Morris (2003) argued the social model of disability provided an opportunity to separate the child s communication needs relating to their impairment (e.g., sign language, equipment) from the disabling barriers created by others (e.g., negative attitudes). This model allows practitioners to acknowledge disabling barriers to communication and an opportunity to safely navigate an alternative approach in order to achieve a positive outcome for the child or young person. The human rights discourse offers the imperative to ascertain the views and wishes of disabled children, as failing to do so is a denial of their fundamental human rights (Morris, 2001). Articles 12 and 23 of UNCROC outline children s rights to express their views freely in all matters affecting them and disabled children s rights to have active participation in the community. Professional attitude was seen as key to successful communication. If staff expected to gain little from communicating with disabled children then they were unlikely to gain much (Davis & Watson, 2002; Morris, 2002; Stalker & Connors, 2003; Watson et al, 2007; Westcott & Cross,1996). If practitioners start from the assumption that all disabled children and young people can communicate then they are far more likely to achieve the child s fundamental human right to be listened to, to have the right to participate and to be part of the decision-making process (Burke & Cigno, 2000; Morris, 2001; Watson et al, 2007; Buchanan & Gunn, 2007). Specific techniques for communicating with disabled children and young people The literature provided specific methods for securing disabled children s involvement and participation, organised here into three headings, engaging and building relationships, communication specific factors, and childcentred approaches for enhancing the child s comfort. Engaging and building relationships Engaging and building a relationship with the child or young person with whom the practitioner is working is a fundamental aspect of social work and although building rapport takes commitment and time, it is an essential part of the communication process (Franklin & Sloper, 2007; Griffiths, 2002; Kelly, 2003; Rowse, 2007; Strock-Lynskey & Keller, 2007). As Kelly s (2003) research found, parents were more satisfied with professionals who took the time to develop rapport with their child. Engagement can bring the child s viewpoint into focus (Morris, 2002) and can assist in preparing the child or young person to participate in planned interviews or consultations (Franklin & Sloper, 2007). Engaging in joint activities or games with the child can facilitate rapport building (Franklin & Sloper, 2006; Stalker & Connors, 2003), for instance taking them to the park or bowling (Kelly, 2003). As a starting point, professionals need to see the child as a child first and disabled second, focusing on the child rather than their impairment (Griffiths, 2002; Stalker & Connors, 2003). Similarly professionals need to respect and recognise the holistic view of the child including their culture, language, religion, age, gender and disability (Kelly, 2003; Mortimer, 2004). The New Zealand Disability Strategy affirms this perspective, recognising people should not be seen or judged by one aspect of their lives 14 SOCIAL WORK NOW: NOVEMBER 2010
17 but rather have their abilities valued and their diversity recognised (Ministry of Health, 2001). Discussions regarding communication are predicated on the child or young person s consent and willingness to participate (Preece, 2002). This requires children and young people to understand the process and what they are being asked to do (Whitehurst, 2006). Several studies suggested consent required an ongoing process where a child or young person were made to feel they could pass on any questions and could easily stop a session if it was causing distress (Preece, 2002; Stalker & Connors, 2003; Taylor, 2007). For children with a high level of impairment, the literature advocated observation to ascertain children s views (Franklin & Sloper, 2006, 2007; Morris, 2002; Mortimer, 2004; Taylor, 2007; Ware, 2004), although Taylor (2007) and Ware (2004) warned that observation can be highly inferential. Preece (2002) also recommended observing children in communicative situations to assess their communication abilities. Communication specific factors The literature suggested there is no specific communication method that is appropriate for all and each method needs to be individualised for each child and their particular pace and ability (Franklin & Sloper, 2007; Kelly, 2003; Mortimer, 2004; Preece, 2002; Stalker & Connors, 2003; Taylor, 2007; Ware, 2004; Westcott & Cross, 1996; Whitehurst, 2006). As Scammel (2005) points out, even in widely used communication methods, such as New Zealand Sign Language, regional differences exist and children and young people ability levels vary. Establishing a child s best method of communication and what can be done to enhance their communication requires prior knowledge of the child from people who know them best, including parents, caregivers and families, speech and language therapists, and teachers or residential staff. (Kelly, 2003; Preece, 2002; Rabiee et al, 2005; Stalker & Connors, 2003; Taylor, 2007; Watson et al, 2007; Morris, 2002; Whitehurst, 2006). Children may point (with fingers, eyes or instruments) to symbols or signs, or use scanning methods such as grid charts, colour-coded charts, books or auditory scanning. Technological aids may assist children, such as a Liberator, 2 or human aids such as sign language interpreters (Westcott & Cross, 1996). Ensuring the child has access to their accustomed communication aids is imperative (Edwards et al, 2005; Morris, 2002; Stalker & Connors, 2003; Westcott & Cross, 1996). Practitioners also need to become familiar with different communication aids and how they work (Stalker & Connors, 2003; Westcott & Cross, 1996). Other useful resources for facilitating communication include: puppets (Franklin & Sloper, 2006; Stalker & Connors, 2003) toys and games (Kelly, 2003; Stalker & Connors, 2003; Watson et al, 2007) a doll s house (Stalker & Connors, 2003) paper, pens, craft items (Franklin & Sloper, 2006: Watson et al, 2007) picture symbols and cue cards (Lewis et al, 2008; Preece, 2002; Taylor, 2007; Whitehurst, 2006) role-playing (Franklin & Sloper, 2006) faces depicting a range of different feelings (Kelly, 2003) talking mats 3 (Taylor, 2007; Whitehurst, 2006). But as Watson et al (2007) caution, resource kits are useful, but practitioners should be prepared to discard any item that is not working or feels inappropriate. Creative and flexible approaches 2 A Liberator is one form of Voice Output Communication Aid (VOCA). It has a keyboard and/or symbols board and a computer speaks sentences inputted by the user (Morris, 2002). 3 Talking mats are resources that aim to enable those with communication impairments to select concrete responses in the form of pictures and place them on a mat to demonstrate their preferences and feelings using either Like or Dislike (Whitehurst, 2006). Disability a new way of thinking 15
18 16 are needed to listen to children s voices (Mortimer, 2004). The literature also suggested that although some factually incorrect or partial information may emerge, being able to hear children s voices directly is still valuable, valid and worth the time and effort (Taylor, 2007; Preece, 2002). Practitioners need to persevere and realise at times they may make mistakes or not understand what a child is saying (Morris, 2002; Watson et al, 2007). When communicating with some children it may be more appropriate to use straightforward closed type questions with single word answers (Preece, 2002; Taylor, 2007), avoid abstract ideas (Taylor, 2007; Morris, 2002), and limit figures of speech, double negatives, and acronyms (Morris, 2002). It is also helpful to slow down, pause, watch and wait for responses (Morris, 2002) and ensure direct eye contact with the child rather than their interpreter, advocate or equipment (Morris, 2002). Professionals need to be aware of the impact of their own gestures, body language, facial expressions and the behaviours on the children (Whitehurst, 2006). Child-centred approaches for enhancing the child s comfort Ensuring that the process is as comfortable as possible for the child or young person being interviewed can reduce their anxiety, increase their confidence and facilitate participation. This can be assisted by: involving other adults known to the child (Kelly, 2003; Preece, 2002; Whitehurst, 2006) keeping consultation sessions short (Preece, 2002) interviewing children in an environment where they feel secure (Morris, 2002; Taylor, 2007; Whitehurst, 2006) selecting a comfortable environment with limited background noise (Morris, 2002) SOCIAL WORK NOW: NOVEMBER 2010 clearly explaining the purpose and anticipated length of the meeting in an introduction letter or and include a photo of the practitioner (Stalker & Connors, 2003) showing the child positive images of disabled children in a variety of activities (Mortimer, 2004; Stalker & Connors, 2003; Westcott & Cross, 1996). Providing feedback to the child and their parents/caregivers after the meeting can keep them informed and make them more comfortable the next time (Franklin & Sloper, 2007). Conclusion Despite an international shift towards taking into account their perspectives, disabled children are much less likely than other children to have their views listened to by professionals. Furthermore, disabled children and young people not only want to, but are able to communicate their views on a whole raft of topics, whether through verbal or non-verbal means. This premise should be the starting point for all engagements. As Morris (2003, p. 346) sums up: the most important starting point is to assume that all children and young people whatever their communication and/or cognitive impairment have something to communicate. It is up to us to find ways of understanding their views and experiences. Based on the findings and recommendations of the reviewed literature, a set of practice tips, outlined below, has been developed for social workers to consider when communicating with disabled children and young people for the purposes of seeking and establishing views. New Zealand s child protection agency has a good foundation for seeking the views of disabled children and young people with legislative, policy and practice requirements in place, as well as obligations through international and local instruments. It is hoped that additional work is undertaken locally on developing ways for practitioners to listen to disabled children, so that this human right becomes embedded in social work practice.
19 Practice tips for social workers to consider when communicating with disabled children and young people Before the meeting Have I consulted with the child s family, caregivers and professionals about how the child prefers to communicate and what can be done to enhance communication? What further advice and information do I require? Have I got all the resources/aids I need to facilitate communication? What will I need to learn or do in order to use these aids/resources? Is an independent facilitator, interpreter, advocate or familiar adult required? Have I sent the child information (in a format accessible to them) about who I am, why I m coming to see them, and how long it will take? Have I selected a venue that is comfortable for the child and a time of day that will enhance communication? Have I considered spending time with the child to observe how they experience things? During the meeting Have I obtained the child s willingness and consent for the interview to occur? Have I checked with the child how they will let me know if they wish to have a break or end the interview? Have I told the child they do not have to answer questions that make them uncomfortable? Have I told the child that there are no right or wrong answers; it is what they think that I want to know? Have I ensured I m looking and speaking directly to the child? Am I keeping my language straightforward and limiting my use of things like figures of speech, abstract concepts, double negatives, jargon, and acronyms? Am I proceeding at the required pace? Am I considering information that may be generated though the child s gestures, body language, facial expressions and behaviours? Disability a new way of thinking Am I thinking about the whole child, and not just their impairment? Have I informed the child when I will be next meeting with them? References Barnett, J. (1987). Communication with persons who have language handicaps: A transactional perspective. Mental Handicap in New Zealand, 11(3), Buchanan, I. & Gunn, R. (2007). The interpretation of human rights in English social work: An exploration in the context of services for children and for parents with learning difficulties. Ethics and Social Welfare, 1(2), Burke, P. & Cigno, K. (2000). Communicating with children with learning disabilities: Recognising the need for inclusive practices. Journal of Child Centred Practice, 6(2), Cavet, J. & Sloper, P. (2004). Participation of disabled children in individual decisions about their lives and in public decisions about service development. Children & Society, 18, Child, Youth and Family. (2006). Disability Awareness Training: A workplace based training resource for CYF staff. Adapted from Kia Rangatu, moving forward, New Zealand Disability Strategy Training Resource, as developed by the Auckland Disability Network, New Zealand. Connolly, M. & Ward, T. (2008). Morals, Rights and Practice in the Human Services. Effective and Fair Decision-Making in Health, Social Care and Criminal Justice. London: Jessica Kingsley Publishers. Davis, J. (2007). Analysing Participation and Social Exclusion With Children and Young People. International Journal of Children s Rights, 15(1), Davis, J. & Watson, N. (2002). Countering stereotypes of disability: Disabled children and resistance. In M. Corker & T. Shakespeare (Eds.), Disability/Postmodernity. Embodying Disability Theory. London, New York: Continuum. Edwards, E., Vaughn, J. & Smith Rotabi, K. (2005). Child abuse investigation and treatment of deaf and hard of 17
20 hearing children: Ethical practice and policy. The Social Policy Journal, 4(3 4), Franklin, A. & Sloper, P. (2006). Participation of disabled children and young people in decision making within social services departments: A survey of current and recent activities in England. British Journal of Social Work, 36(5), Franklin, A. & Sloper, P. (2007). Participation of Disabled Children and Young People in Decision-Making Relating to Social Care. York: Social Policy Research Unit, University of York. Griffiths, E. (2002). Social Work Practice with Disabled Children. Norwich: Social Work Monographs. Kelly, B. (2003). Working together to support children who have intellectual disabilities, and their families. Childrenz Issues, 7(2), Kelly, B. (2005). Social work with disabled children. Childrenz Issues, 9(1), Lewis, A. (2004). And when did you last see your father? Exploring the views of children with learning difficulties/ disabilities. British Journal of Special Education, 31(1), 3 9. Lewis, A., Newton, H. & Vials, S. (2008). Realising child voice: the development of Cue Cards. Support for Learning, 23(1), Ministry of Health. (2001). The New Zealand Disability Strategy. Making a World of Difference. Whakanui Oranga. Wellington: Ministry of Health. Monteith, M. & Cousins, W. (2000). Implementing the Children (NI) Order 1995 researching the initial impact on social services provision to disabled children in Northern Ireland. Child Care in Practice, 6(3), Morris, J. (2001). Social exclusion and young people with high levels of support needs. Critical Social Policy, 21(2), Morris, J. (2002). A Lot to Say! A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments. London: Scope. Morris, J. (2003). Including all children: Finding out about the experiences of children with communication and/or cognitive impairments. Children & Society, 17, Mortimer, H. (2004). Hearing children s voices in the early years. Support for Learning, 19(4), Niemann, S., Greenstein, D. & David, D. (2004). Helping Children Who Are Deaf. Family and community support for children who do not hear well. California: The Hesperian Foundation. Oliver, M. (1996). Understanding Disability. From Theory to Practice. Hampshire: Palgrave. Oosterhoorn, R. & Kendrick, A. (2001). No sign of harm: Issues for disabled children communicating about abuse. Child Abuse Review, 10(4), Preece, D. (2002). Consultation with children with autistic spectrum disorders about their experience of short-term residential care. British Journal of Learning Disabilities, 30, Rabiee, P., Sloper, P. & Beresford, B. (2005). Doing research with children and young people who do not use speech for communication. Children & Society, 19, Rowse, V. (2007). Consent in severely disabled children: informed or an infringement of their human rights? Journal of Child Health Care, 11(1), Scammel, P. (2005). Working in a deaf world. Social Work Review, 17(4), Stalker, K. & Connors, C. (2003). Communicating with disabled children. Adoption & Fostering, 27(1), Strock-Lynskey, D. & Keller, D. (2007). Integrating a familycentered approach into social work practice with families of children and adolescents with disabilities. Journal of Social Work in Disability and Rehabilitation, 6(1 2), Taylor, K. (2007). The participation of children with multisensory impairment in person-centred planning. British Journal of Special Education, 34(4), United Nations Convention on the Rights of the Child. (2005). Wellington: Office of the Children s Commissioner. Ware, J. (2004). Ascertaining the views of people with profound and multiple learning disabilities. British Journal of Learning Disabilities, 32, Watson, D., Abbott, D. & Townsley, R. (2007). Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services. Child: Care, Health and Development, 33(1), Westcott, H. & Cross, M. (1996). This Far and No Further: Towards ending the abuse of disabled children. Birmingham: Venture Press. Whitehurst, T. (2006). Liberating silent voices perspectives of children with profound & complex learning needs on inclusion. British Journal of Learning Disabilities, 35, Willow, C. (2002). Participation in Practice. Children and young people as partner s in change. London: The Children s Society. Wilson, L. (2004). Towards equality: The voices of young disabled people in Disability Rights Commission research. Support for Learning, 19(4), Woodcock, J. & Tregaskis, C. (2008). Understanding structural and communication barriers to ordinary family life with disabled children: A combined social work and social model of disability analysis. British Journal of Social Work, 38(1), Megan Chapman is the Regional Child Disability Advisor for Child, Youth and Family s Central Region. 18 SOCIAL WORK NOW: NOVEMBER 2010
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