Upholding the human right of children in New Zealand experiencing communication difficulties to voice their needs and dreams

Abstract

New Zealand Ministry of Education’s proposal for an updated service to support children experiencing communication difficulties provides an opportunity to consider the essential criteria required for children to express their opinion, information and ideas as outlined under Article 19 of the Universal Declaration of Human Rights. This commentary begins with a summary of key policies that provide strategic direction for enhancing children’s rights to be actively involved in the development of services designed to support them and to communicate and participate in inclusive environments. The authors use a human rights lens to inform the development of speech-language pathology services that facilitate individuals’ contribution and engagement and are responsive to their needs. A review of international literature describing the lived experience of children and young people identifies key factors related to accessible information, service coordination, holistic practice, and partnerships that facilitate co-constructed understanding and decision-making. The commentary concludes with suggested recommendations for structuring services, establishing partnership models, and capability building.

Keywords:

• Article 19
• Universal Declaration of Human Rights
• United Nations
• children
• lived experience
• communication disorders
• speech, language and communication needs

Introduction

New Zealand’s restructure of its government funded speech and language therapy service (known as speech-language pathology in other parts of the world) coincides with the 70^th anniversary of the Universal Declaration of Human Rights (United Nations, 1948) and is a timely reminder to review service development through a human rights lens. This commentary paper identifies essential factors required to ensure services are responsive to children’s voice and enhance individuals’ rights under Article 19 of the Universal Declaration of Human Rights “to seek, receive and impart information and ideas through any media” (United Nations, 1948). It begins with a summary of international and New Zealand policies that promote a strategic focus on children’s rights and then highlights challenges accessing the voice of children who have communication disorders.

A review of available reports of the lived experiences of communication disorders for children, young people and their families highlights various key criteria for appraising and informing service development through a human rights lens. The right to express opinions and ideas as outlined in Article 19 applies to all children, but requires specific consideration for children who have communication disorders that potentially impact their ability to understand and/or convey meaning through spoken or written media. There is substantial evidence that these children may be particularly vulnerable because of the potential for their communication disorder to negatively impact their educational and socioemotional outcomes. For some children, the impact on their lives is pervasive and continues into adulthood and beyond (Elbro, Dalby, & Maarbjerg, 2011).

Commitment to human rights for children

In alignment with the Universal Declaration of Human Rights agreement, the United Nations Convention on the Rights of the Child focuses specifically on children’s right to voice an opinion in all contexts (United Nations, 1989). The importance of upholding this right for children with communication disabilities is strengthened by the Convention on the Rights of Persons with Disabilities (United Nations, 2006), which outlines commitments to foster people’s “participation in society, their sense of dignity and self worth and the development of their personality, abilities and creativity” (Article 24) and opportunities to “attain maximum independence and ability” (Article 26).

New Zealand’s advocacy for the importance of human rights is apparent in the current Disability Strategy (Office of Disability Issues, 2016) written from the perspective of people with disabilities. The vision is that New Zealand is a place where people “have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen” (p. 8). This aspiration is founded on the Convention on the Rights of Persons with Disabilities and New Zealand’s Treaty of Waitangi (1840) principles of partnership, participation and protection. The strategy specifically refers to people with disabilities being involved in decision-making that impacts them, the availability of mainstream supports and services, and a whole of life and long term approach.

New Zealand’s Children’s Commission is an agency which has a key mission to capture the voices of children by engaging with them “to ensure their voices are heard on issues that affect them” (Children’s Commissioner, 2017). The current commissioner, Judge Andrew Becroft is the patron for the New Zealand Speech-Language Therapists’ Association and a strong advocate for children with communication disorders who has highlighted the challenges in accessing the voice of these children.

Accessing children’s voice

Researchers have recognised that children with communication disorders need alternative and creative ways to voice their opinions (Roulstone & McLeod, 2011). Semi-structured interviews have been used as an effective way to support young people to share their lived experience (Lyons & Roulstone, 2017), but researchers are aware of the challenges for younger children (Owen, Hayett, & Roulstone, 2004). Strategies for accessing their voice have included a Likert pictorial questionnaire (McLeod, Daniel, & Barr, 2013) and art-based methods (Coad & Hambly, 2011; Holliday, Harrison, & McLeod, 2009). However, adults need to be cautious when interpreting meaning from children’s art work as the authenticity of responses and engagement in the activity may be compromised by the adult-selected stimuli (Holliday et al., 2009). The power differential between adults and children may lead children to respond in ways they believe are acceptable to adults (Owen et al., 2004).

Given these challenges, speech-language pathologists (SLPs) have relied on garnering information about children’s lived experiences from the insights of ‘proxies’ who are family members or familiar adults (Goldbart & Marshall, 2011). As there is concern that information gained through an adult lens is unlikely to be an authentic representation of a child’s perspective, triangulation through the integration of a variety of adult and child sources may be the most effective option to uphold the rights of children with communication disorders to be heard (Merrick & Roulstone, 2011). The following review of participant perspectives of speech-language pathology services summarises the available evidence gained through studies of children’s voice and reports from parents and family members.

The needs and dreams of children experiencing communication difficulties

In addition to the research literature, two key sources will be referred to extensively in this paper. One source is research carried out in the United Kingdom as part of The Better Communication Research Program (BCRP). This produced a wealth of data on the perspectives and preferred outcomes of parents and children. Another source is the Engagement Forums Feedback document (Ministry of Education, 2015) which presented parent, child and stakeholder feedback that informed the Ministry of Education’s development of their new speech-language pathology service. Other sources referred to focus specifically on speech-language pathology or broader special education services. Four themes emerged from a synthesis of these sources: information, coordination, holistic practice and partnership.

Information

At the outset, even before referral, parents and children need access to information. Parents have reported concerns about the limited information available about services and clinical pathways, and the challenges they experience understanding reports about their child’s communication difficulties (Roulstone & Lindsay, 2012). Parents want information to be presented “on a level that they can cope with, be comfortable with, and understand” (Ministry of Education, 2015, p. 70). It is particularly critical that children and parents receive information about the purposes of the services they are receiving (Owen et al., 2004).

Coordination

Parents want coordinated services with transparent systems and pathways, and cohesive communication. They express frustration at the amount of fragmentation both within and across services. They want smooth transitions within special education so that information is shared as children move through the system (Ministry of Education 2015). In addition, they want all organisations that provide services for children (e.g. education, health, social services) to be integrated and to work together to achieve the best outcomes for their child (Dockrell, Lindsay, Roulstone, & Law, 2014). They are tired of “explaining the situation again and again” (Ministry of Education, 2015, p. 24).

Holistic practice

Parents want professionals to view their child holistically (Dockrell, Ricketts, & Lindsay, 2012) and to engage in strengths-based conversations. They enjoy being asked about their child’s positive achievements rather than always having to discuss problem areas (Dockrell et al. 2014). Interviews with children revealed that they prefer to discuss family, friends and fun activities; they only described communication difficulties when they were directly asked about these (Dockrell et al., 2014).

Parents want professionals to be “goal focussed and growth focussed”, but also to understand that success might have a broader focus than academic achievement (Ministry of Education, 2015, p. 116). Roulstone, Coad, Ayre, Hambly, and Lindsay (2012) found that parents tended to talk about their child’s communication skills in relation to broader life goals such as achieving increased independence or greater social inclusion, and they conceptualised the development of communication skills as a pathway to fulfilling these. Other areas that parents referred to as being particularly important included their child’s emotional needs, the knowledge and attitudes of those interacting with their child and family and the inclusiveness of the school.

Children have also expressed views around the outcomes they value. Owen et al. (2004) interviewed 12 children aged 6–11 years about their experiences of speech-language pathology services. Interestingly, when the children commented on progress they had made, they often referred to instances in which they had become more independent. They also expressed wishes about broader issues such as friendships, progress with their learning and/or future aspirations. Interviews with 29 children and young people (6 to 18 years) found similar perceptions, with a focus on achievements that lead to independence and impacted their quality of life (Markham, van Laar, Gibbard, & Dean, 2009).

Young children may also have different perceptions of their communication difficulties than those held by professionals or parents. McCormack, McLeod, McAllister, and Harrison (2010) interviewed 13 pre-school children with speech impairment and 21 significant others (family members and teachers). The children primarily attributed their communication breakdowns to an external cause, a “listening problem” rather than a “speaking problem”. Parents, on the other hand, felt that their children experienced both a “speaking problem” and a “listening problem”. The children didn’t identify speech-language pathology as a solution to their communication difficulties. The parents identified speech-language pathology as a solution for the “speaking problem” only. McCormack et al. (2010) concluded that SLPs need to understand more about the nature of communication problems as they are described by those who experience them and consider more holistic solutions to target desired goals.

Partnership

Perhaps, most importantly, parents want to feel that they have a right to provide a voice on behalf of their child that will be acknowledged and valued (Bercow, 2008; Ministry of Education, 2015). Parents want to be viewed as having unique insight and expertise (Keen, 2007; Roulstone & Lindsay, 2012). Parents hold a wealth of information about their child, such as their strengths and weaknesses, likes and dislikes, and learning preferences (Bercow, 2008; Ministry of Education, 2015). They want professionals to presume they are willing and competent team members and to understand that life factors related to supporting children with diverse needs and/or health and employment commitments sometimes constrain their availability to engage in partnerships (McCormack, McAllister, McLeod, & Harrison, 2012). Parents’ engagement may also be restricted by challenges understanding roles and processes (Dockrell et al., 2012), language and cultural barriers (Verdon, Wong, & McLeod, 2015) and anxiety about attending formal meetings (Ministry of Education, 2015).

Parents want to feel more included and empowered in decision making. They want to understand their child’s needs and the interventions available, so that they can make evidence based choices (Ministry of Education, 2015; Roulstone & Lindsay, 2012). Researchers have highlighted parent perspectives about factors that facilitate their contributions to partnerships. These include trusting and respectful professional relationships and accessible communication (Keen, 2007).

Although there are few studies of children’s perspectives about involvement in partnerships, some findings indicate that they want the right to voice their preferences and be involved in decision-making. In one study, children aged 5–12 years reported attending speech-language pathology because it was mandatory; there were few opportunities for them to engage in decision making about goals and intervention (Fourie, Crowley, & Oliviera, 2011). McCormack et al. (2012) interviewed two young men (aged 17 and 23 years) to gain an in-depth understanding of life with speech difficulties. The young men acknowledged the speech-language pathology support that they had received in their early years. However, as the support had been impairment focussed, they felt that it had not provided ongoing support or assisted them to manage the impact on their quality of life. The authors concluded that SLPs need to “involve individuals with speech impairment and their families in decision-making about intervention goals and to provide intervention that will have real-world effects” (p. 155).

Conclusions

Appraising speech-language pathology services through a human rights lens provides an opportunity to specifically focus on the impact on children with communication disorders and families receiving the service. The participant perspectives reviewed provide a framework to guide the development of speech-language pathology services that are responsive to children’s rights under Article 19 of the Universal Declaration of Human Rights. Children are empowered when adults support them to express their needs, aspirations and dreams and seek to understand their perspectives and lived experiences.

They need an interconnected web of support to enable them to live fully in both private and public contexts. To enable the development of a web of support, it is important that those who make up the multi-person systems that support children take into account children’s experiences in all these contexts in working with them, in order to meet children’s individual socio-emotional needs. (McLeod et al., 2013, p. 81)

Consultation with SLPs will identify the systems, professional competencies and interpersonal skills that support information sharing, service coordination, holistic practice, and partnership approaches. Time and resources are required to build the relationships that form the foundation of partnerships. There is also a need for a heightened focus on children’s preferred outcomes with measures that identify the impact of the child’s communication difficulties on their participation and quality of life.

As the updated speech-language pathology service is implemented in New Zealand, ongoing evaluation will be essential to determine whether it is both informed by and responsive to children’s voice. Outcome measures based on the framework constructs: information sharing, coordination of services, holistic approaches and partnerships have potential to identify whether systems and services are upholding the rights of children and their families.

Declaration of interest

There are no real or potential conflicts of interest related to the manuscript.