4. Are children with disabilities' voices different to all children's voices?
In both the NZ Youth Parliament and the Commissioner for Children’s Office, children with disabilities have been included alongside other children. As a model for a more inclusive society, that would appear to be a reasonable way forward, however it is not without risk that the issues particularly relevant to children with disabilities might be lost or their voice in decision-making about these issues weakened. In order to address the UNCROC and the UNCRPD, there is a need to be inclusive of children with disabilities but also provide opportunities to hear from them separately when the policy or practice is directly related to their needs. Balancing the competing demands for the input of children with disabilities to policy is not necessarily easy but policy developers need to keep in mind Tisdall’s (2012) concern that they do not become “ghettoised", with their voice only seen to count on issues that have been determined by others (p. 187). Furthermore, Morris (2003) reminds of the importance of developing communities where all views are respected, rather than engaging in formal processes with children just to meet the requirements of others.
As a group, children with disabilities are no more homogenous than all children. In addition to the social and cultural differences of the whole population, children with disabilities cannot be categorised together. In the 2004 document, Living with Disability in New Zealand (Ministry of Health, 2004), types of disability for children were classified into eight specific groups with an additional “other” group. The specific groups included children receiving special education support and technical aids thereby assuming a type of disability, while also naming as categories: chronic conditions/health problems; psychiatric/psychological; hearing; seeing; speaking and intellectual disabilities. There will be different issues to the forefront of children both within and across each of these categories, oftentimes reflecting their cultural and social diversity more so than diversity of disabilities (Davis et al., 2003). Yet, diversity of disability might also generate different issues (Carpenter & McConkey, 2012), which should not be ignored. In addition to their diverse issues, as suggested by the varied recommendations in the recent guide to community engagement with disabled people (Ministry of Health, 2016), the type of impairment they have is likely to have an impact on the approach that might best elicit the views of the disabled child.
That children with disabilities can contribute to decisions about issues that affect them was confirmed in Cavet and Sloper’s (2004) literature review, although they felt that child participation was underdeveloped and absent on many topics at that time. In the intervening years since that review, a body of literature has addressed ways in which children’s voices could be heard both in policy development and in research. Many build on one or other of the various models for child participation in decision-making that have been proposed. Fundamentally, the research approaches can be categorised as “on children, with children, and by children” (Clavering & McLaughlin, 2010, p. 605), with the models of Hart’s ladder (Hart, 1992) and Shier’s pathways (Shier, 2001) being the most often cited that illustrate the various levels and considerations. In both of these the minimum for meeting the expectations of UNCROC and UNCRPD are the higher levels that incorporate children’s involvement in decision-making. The move to a more emancipatory style of children’s involvement is seen in the approaches taken by the Office of the Children’s Commissioner and the Ministry of Youth Development in New Zealand for all children, as well as a few projects from the United Kingdom and Australia that have focused on disabled or disadvantaged children (Michail & Kellett, 2015; Rome, Hardy, Richardson, & Shenton, 2015).
Keeping the above points in mind, a starting place when seeking a child’s perspective might be whether or not it is the specific child’s situation that is of interest, or whether the child is being asked to contribute a wider viewpoint that will be seen as representative of a group of children. Franklin and Sloper (2006) suggest a place for both but with different strategies involved. In their survey of social service departments in England, 60% of the returned responses indicated that children with disabilities were making decisions in their own care and in service development, with a further 40% in one or the other process. Personal reviews were the main avenue for children to be involved in decisions about their own care. While children as young as five were contributing, the likelihood of being asked about their interests in their care increased as children aged. Involvement in decisions about service development was more likely for teenage children, although some services noted the participation of younger children. A main point of Franklin and Soper’s study was to ascertain the impact that participation had on service development. From their survey, they identified that 44% of services had made some changes as a result of the children’s input. For some services it was too early to identify changes. Fifteen of the initiatives had resulted in a change to leisure activities, with information provision being the next category at a total of seven initiatives. These changes do, of course, reflect the topics for which the young people’s opinion was being sought. Interestingly, there was dedicated funding supporting 64% of the reported service development initiatives, raising the question as to whether or not there would be commitment to such strategies if they needed to be funded out of the service’s own budget.
Whether for service development or local or national body planning, a key first step in seeking the voice of children is a genuine desire to hear what they have to say (Cockburn, 200; Freeman & Aitken-Rose, 2005), an emphasis that can be seen in Shier’s pathway (Kellett, 2011). Successful studies have provided time and regular contact for relationships to develop, identification of shared concerns and an ability to take the broad issues and translate these into specific, focused projects that are achievable (Badham, 2004; Beresford, 2012; Michail & Kellett, 2015; Murray, 2012). As Cockburn identifies, true consultation with children will aim towards their empowerment, conflict can be expected as parties work through their different perspectives. In many instances consciousness-raising will be a necessary beginning, but as Pascal and Bertram (2009) have found in their research with young children, that can be a challenge for the adults in their sphere. In their opinion and that of Kembhavi and Wirz (2009), who worked with disabled youth, it is important to provide education and support for the adults to acknowledge and work through their anxiety about children’s empowerment. This step might go some way to address the ambiguity between protection and empowerment mentioned earlier. In addition to providing opportunity for children with disabilities to reflect upon their own life, consciousness-raising will involve familiarising them with their rights as expressed in documents like the UNCRPD. Of note, the Ministry of Youth Development (2011) survey indicated that the UNCRPD was unfamiliar to the majority of respondents. Furthermore, simply listening to children will not mean that they feel they have been heard (Kellett, 2011). To feel heard, there needs to be a response and change that reflects that the child’s concerns were taken seriously or, as Lewis (2004) notes, if change has not happened then they need to know why not. If adults are serious about hearing children’s voices, it will only be from such responses that children will feel empowered to attain the top of Hart’s ladder, whereby they take the lead in decision-making.
Within the United Kingdom, the Disabled Children and Young People’s Participation Project (DCYPPP) emphasised young people with disability expressing their views while creating a supportive environment in which to do that (Murray, 2012). Drawing together the experiences of the members, through carefully built relationships, led to a much greater understanding of the needs and wishes of disabled youth and was seen as one of the great successes of the project. Through taking this approach to the research the young people developed their confidence, which was integral to them expressing their views. Other important factors included good facilitation, advanced IT services to help young people with difficulties in communication, and for youth with disability to be made to feel that they are equal partners in the research process as a whole (Murray, 2012). In the more recent English project, The eXtreme Group, agenda days run by children with disabilities without adult involvement, provided opportunity to hear the views of a wide group of children with disabilities. To aid communication, a variety of techniques were used, including graffiti walls, post-it notes and drawing, in a venue that was accessible and promoted informality (Rome et al., 2015). There were important lessons from the Australian study with disadvantaged children, there was the need to be able to work through challenges, such as behaviour that needs moderating in order for all children participating to feel comfortable, and it was important that the child-led nature of the study was successfully implemented (Michail & Kellett, 2015).
There would appear to be general acceptance that older children can contribute meaningfully to decision-making and policy development. It has to be noted that there is also growing evidence that very young children can make meaningful contributions provided the method of eliciting their opinions is appropriate. However, studies need to be well-funded to ensure that they can be flexible in how they work with young people (MacNaughton, Hughes, & Smith, 2007; Michail & Kellett, 2015; Tisdall, 2012). As Tisdall further notes, children also need access to funding, the authority to enter the field and the necessary research skills if they are to be fully participatory. An important consideration to the inclusion of child researchers are the policies that might exist that can prevent or compromise childrens’ participation in research (Badham, 2004).
Regardless of whether the attempts to hear from children take a fully participatory/emancipatory approach or not, methodologically it is suggested that researchers and policy developers consider carefully their sampling or inclusion strategy. Convenience samples can be challenged in terms of the validity and generalizability of opinions (Carpenter & McConkey, 2012). Carpenter and McConkey’s recommendation is to ensure wide representation of children with disabilities, however, Tisdall (2012) warns that data from children with disabilities should be seen as no more representative than would be expected if the research related to adults. Carpenter and McConkey also commented on the gap in research that explored children’s voices about their immediate care needs, raising the concern that policy might change but that might not lead to the desired change in practice. Therefore selection of participants needs to consider both policy advice and implementation and who will best inform both aspects. As suggested above, to demonstrate to children that their voice has been heard they need to see a change in practice. Pascal and Bertram (2009) suggest that this requires “innovation, documentation and development within ‘real world’ settings” (p. 259). As will be evident in the next section on strategies that have been used to encourage children’s participation, there is no shortage of ideas for innovation, but for momentum and continuity, ideas need to be replicable in a variety of contexts.
If children with disabilities’ voices and perspectives are to be fostered and enabled in developing policy and legislation their views must first be ascertained through active engagement with them in research. The focus on children’s rights following the UNCROC has led to developments in research processes such as improved consultation methods, active and participative inclusion of children along with a greater willingness to listen to children. Methods of working with children have developed from a consultative to a participative paradigm in order to avoid tokenism and allow children to truly share in decision-making (Kellett, 2011). Traditional research places children as the object to do research on whereas participatory research allows the child to have a say (although not necessarily the final say) into certain aspects of the research project, for example how it is designed, implemented, evaluated and what is done with the findings (Kembhavi & Wirz, 2009). Fundamental to the participative approach is the attempt to shift the balance of power (Ajodhia-Andrews, 2016). Whatever the approach, it is important to plan well and ensure that resources and supports that will be required are available.
Footnote:
(2) Further information on Hart’s ladder and Shier’s pathway can be found in the cited references but there are also links to information about these at http://www.myd.govt.nz/working-with-young-people/youth-participation-in-decision-making
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