Implementing recommendations of the World Report on Disability for indigenous populations

Abstract

Typically, the types of services provided for people with communication disorders (PWCD) and the ways the services are provided have been designed for dominant populations in the Minority World. If services are to be truly accessible and equitable, they must be designed to account for cultural variations in beliefs, needs, and desires of PWCD and their families. This article describes the health conditions that put indigenous populations at particular risk for communicative disorders and gives examples of ways in which speech-language pathologists (SLPs) have addressed the recommendations of the World Report on Disability when working with PWCD in indigenous communities in Minority World countries.

Keywords::

• World Report on Disability
• World Health Organization
• people with communication disorders
• indigenous

Introduction

The International Classification of Functioning, Disability and Health (ICF; World Health Organization, 2001) is influencing the diagnosis and treatment of people with communication and swallowing disorders (PWCD), guiding speech-language pathologists (SLPs) from a medical approach to disabilities to a biopsychosocial model in which they consider broad personal and environmental factors that affect the manifestation of disabilities and persons’ access to services. Rather than focusing on the impairment itself or the development of isolated skills, SLPs are focusing on persons’ participation in their families and communities. The intention of the World Report on Disability (WRD; World Health Organization and The World Bank, 2011) is to document what is required to improve participation and inclusion of people with disabilities. Wylie, McAllister, Davidson, and Marshall (2013) challenge SLPs to consider how they might foster equitable and appropriate services for unserved and under-served PWCD in both majority and minority world settings by effecting changes in factors that influence services to PWCD at macro levels (external factors distant from the organization in which they work, e.g., national or international position statements or laws), at meso levels (external factors that are close to the organization, e.g., laws within a state or policies within an educational system), and micro levels (internal factors within their own practice, e.g., changing internal policies and procedures regarding assessment and intervention practices with persons they serve).

Although SLPs who have been consultants to the WHO or are members of international boards, such as the International Association of Logopedics and Phoniatrics, may be able to influence global or macro level changes for PWCD, few SLPs operate at this level. Many SLPs who participate in state and national organizations can bring about meso-level changes. For example, the advocacy by the American Speech-Language-Hearing Association has resulted in states passing legislation to mandate universal infant hearing screening. All SLPs have the opportunity to bring about micro-level changes in services for PWCD within the organizations in which they work.

Typically, the types of services provided for PWCD and the ways the services are provided have been designed for dominant populations in the Minority World. If services are to be truly accessible and equitable, they must be designed to account for cultural variations in beliefs, needs, and desires of PWCD and their families. This article describes the health conditions that put indigenous populations at particular risk for communicative disorders and gives examples of ways in which SLPs have addressed the recommendations of the World Report on Disability (a) invest in specific programs for persons with disabilities, (b) involve persons with disabilities, and (c) improve human resource capacity to ensure non-discrimination and participation when working with PWCD in indigenous communities in minority world countries.

In the Americas, Australia, and New Zealand, indigenous communities are those that occupied the land before the arrival of European settlers. Despite extensive diversity in indigenous communities, all indigenous people have one thing in common: they all share a history of injustice and historical trauma. It includes trauma from one's own lifespan and trauma that emanates from massive group trauma such as massacres, boarding school abuses, and inter-generational transfer of traumatic responses (Evans-Campbell, 2008). The Maori in New Zealand, the Inuit of the circumpolar north; the Aborigines of Australia; Native Hawaiians, Alaska Natives, and Native Americans in the US; and First Nations people of Canada have less education, higher poverty levels, and more physical and psychological health problems than persons in their countries from dominant cultures (Barnes, Adams, & Powell-Griner, 2010; George, 2011; United Nations, 2009). In recent years, the poverty and health issues of indigenous peoples are being linked to their historical trauma (Brave Heart & DeBruyn, 1998). Several health issues contribute directly to communication disorders.

Health issues affecting communication disorders in indigenous populations

Otitis media (OM) is the most frequently identified disease of indigenous children in Australia, New Zealand, Canada and the US (Bowd, 2005; Giles, & O’Brien, 1991; Hunter, Davey, Kohtz, & Daley, 2007; Morris, Richmond, Lehmann, Leach, Gunasekera, & Coates, 2009). OM occurs more frequently and is typically more severe in these populations. OM includes not only fluctuating hearing loss but also severe complications resulting in hearing impairment of a more permanent nature (Moore, 1999).

Diabetes and diabetic-related complications such as heart disease, retinopathies resulting in vision loss, circulatory problems that can result in amputations, and stroke are also high in indigenous populations in industrialized countries and are increasing (Lowell, Maypilama, Yikaniwuy, Rrapa, Williams, & Dunn, 2012; Si, Bailie, Wang, & Weeramanthri, 2010). Indigenous populations in the Americas, Australia, and New Zealand are 2–4-times more likely to have diabetes than in the general population. Indigenous populations in all these countries also have markedly higher rates of acquired brain injury (ABI) resulting from car accidents and physical assaults (Jamieson, Harrison, & Berry, 2008; Langlois, Rutland-Brown, & Wallace, 2003).

The incidences of alcohol abuse and fetal alcohol spectrum disorders (FASD) have been documented to be higher in many indigenous groups compared with dominant culture groups in the same countries (Szlemko, Wood, & Thurman, 2006). FASD, which is caused by the teratogenic effects of alcohol ingestion during pregnancy, results in pre-natal and post-natal growth deficiency, central nervous system dysfunction, and craniofacial anomalies. Children with FASD exhibit gross and fine motor delays, speech and language delays and disorders, learning disabilities, attention-deficit/hyperactivity disorder, hearing impairments, mental retardation, and behavioural disorders (Carney & Chermak, 1991).

A strategy for effecting change

SLPs serving indigenous populations in the minority world need to be knowledgeable regarding the health conditions that place indigenous persons at high risk for communicative disorders and how aspects of the indigenous culture influence the acceptability and response to programs provided (Snow, 2009). Often SLPs will need to effect micro changes within their practices to best meet the needs of indigenous PWCD.

The PRECEDE-PROCEED framework (Green & Kreuter, 2004) provides a structured approach for changing factors that influence the prevalence of communicative disorders and the development of culturally-relevant intervention programs. The PRECEDE components of the model are what one does before initiating a program and the PROCEED components are what one does in implementing the program. PRECEDE and PROCEED are acronyms. PRECEDE (Predisposing, Reinforcing, and Enabling Constructs in Educational/ Environmental Diagnosis and Evaluation) outlines a diagnostic process to assist in the development of a targeted health or educational program. As its name implies, it represents the process that precedes, or leads up to, an intervention. PRECEDE is based on the premise that a diagnosis of the problem is very essential before developing and implementing the intervention plan. Pre-disposing factors include knowledge, attitudes, beliefs, personal preferences, and existing skills. Reinforcing factors include factors that reinforce the desired behaviour change, such as social supports. Enabling factors are skills or physical factors such as availability and accessibility of resources or services that facilitate change. PROCEED (Policy, Regulatory, and Organizational Constructs in Educational and Environmental Development) guides the implementation and evaluation of the program designed using PRECEDE. The information gained in the PRECEDE stage provides the knowledge to design and implement interventions. There are several phases of PRECEDE-PROCEED:

Phase 1

Identify ultimate outcomes desired by the community or PWCD and their families. Professionals working across cultures increasingly are using participatory action research (PAR) for developing educational and health programs that help people change their world in ways they desire (Reason & Bradbury, 2001). PAR seeks to improve the quality of participants’ lives by using their own knowledge in searching for relevant solutions to relevant problems. Employing PAR methods, SLPs and PWCD, their families, and community members (including elders, and others involved in providing services to a family or community) collaborate in program development. To gather information, SLPs may form planning committees, hold community forums, and conduct focus groups, surveys, and interviews. These activities enable SLPs to answer questions, such as: What are the identified communication impairments in the community; how do they affect persons’ quality-of-life; what do families or PWCD desire as outcomes? The program outcomes are identified by the PWCD, their families, or the community. For example, one mother with a child with severe hearing impairment wanted him to be able to participate in the religious activities of the community. A group of Pacific Northwest indigenous persons wanted their children to be more successful in reading and writing to enable them to understand and be active in efforts to protect salmon. By involving members of the community, SLPs are able to see the issues and needs as the community sees them.

Phase 2

Identify the issues that affect the desired outcomes, including the predisposing, enabling, and reinforcing factors. These can be contextual (personal and environmental) factors as identified in the ICF that either provide support for or barriers to achieving the outcomes. Consider how the following information gained in Phase 1 might affect the development and implementation of a preventative or intervention program:

• Families participate in tribal healing ceremonies before accessing Western therapeutic interventions.

• Participation in Western interventions needs to be approved by grandparents or community elders.

• An indigenous mother with a child with a hearing loss reported an advantage of being a member of the pueblo was that everyone accepted her child as she was; and a disadvantage of being a member of the pueblo was that everyone accepted the child as she was. As a consequence of this attitude, community members saw no reason for this mother's seeking intervention services for her daughter.

• Some indigenous families believe that children with obvious developmental disabilities, such as Down Syndrome, should be accepted for themselves and should be kept comfortable and happy. The children should not be asked to do anything that makes them uncomfortable or that they do not want to do.

• Learning by watching and listening is highly valued. Many indigenous families do not expect children to talk much before age 3.

Phase 3

Identify the administrative and policy factors that can influence the program you intend to implement. These must be addressed prior to program implementation. These policies can be within the tribe or at school district, state, or federal levels. What resources are available?, how is funding allocated?, what organizational barriers are present?, what organizations are in the community?, external to the community?, what policies/laws are in place?, how do the policies affect provision of appropriate services? For example,

• The US does not have universal health coverage. Each Native American indigenous community is given a set amount of funding for healthcare for the year. In several instances funds were used early in the year for persons with traumatic brain injuries, so no money was left for myringotomies for children with chronic otitis media.

• To qualify for services, a state mandated that infants and toddlers could only receive services if they scored more than 33% below their age level on one specific infant toddler developmental assessment. The assessment has few items that evaluate communication skills and many items/tasks are unfamiliar to indigenous children.

• PROCEED describes how to proceed with the intervention itself. What policies for program implementation will be put in place; how will the program be managed, supported, and monitored within an organization (school system, hospital, Head Start program).

Phase 4

Based on the information gathered in the PRECEDE stage, design and conduct the intervention.

Phase 5

Process evaluation. Is the program being carried out as planned? Are the persons responsible for the programs carrying it out as intended?

Phase 6

Impact evaluation. Is the intervention having the desired impact on the target population? Are PWCD making gains in their speech, language, and literacy skills. This is comparable to the ICF's activity domain. In the ICF, activity refers to the execution of a specific skill or task by an individual, e.g., producing intelligible speech sounds or constructing grammatically correct sentences.

Phase 7

Outcome evaluation. Is the intervention leading to the outcome (the desired result) that was envisioned in Phase 1? This considers performance in the ICF participation domain which is the use of skills (intelligible speech, grammatically correct sentences) in meaningful interactions with others. How are the PWCD communicating and using literacy in functional ways in daily life—in the ways expected in the community. Is the deaf child taking a role in the religious ceremonies of his tribe?

An example of change

Inglebret, a speech-language pathologist, and CHiXapkaid, an educator and Skokomish tradition bearer, have employed a version of the PRECEDE- PROCEED framework in developing a language-literacy program for indigenous students in the Pacific Northwest of the US (cited in Westby & Inglebret, 2012). Native American students have been one of the lowest performing minority groups in America with regards to attrition rates and standardized test scores. Reasons for such performance have been attributed to the economic and social disparities endured by many Native communities, but substantial research now points to the lack of culturally relevant curriculum and pedagogy for Native students within the larger education system as a possible obstacle to academic success (George, 2011).

Inglebret and CHiXapkaid identified the educational agenda of the stakeholders. They held small group discussions that included indigenous faculty members and students, in collaboration with indigenous service providers representing multiple Northwest tribes and native villages and came from various human service professions, including education, speech-language pathology, counselling psychology and tribal administration. In addition, members of indigenous nations have been videotaped as they participated in individual interviews.

From these meetings and interviews, Inglebret and CHiXapkaid gained an understanding of kinds of knowledge the indigenous participants desire for their children and how children typically learn within the tribes. In collaboration with tribal members, public schools, and the Northwest Indian Fisheries Commission, Inglebret and CHiXapkaid have been involved in the development and implementation of The Shadow of the Salmon multiliteracies curriculum (Northwest Indian Fisheries Commission, 2009). (A multiliteracies approach to literacy incorporates culturally-relevant language and themes in multimodal ways of making meaning where the written word is part and parcel of visual, audio, and spatial patterns (Westby, 2010; Westby & Inglebret, 2012)). In the Pacific Northwest, the salmon has played a key role in the lives of indigenous communities throughout historic and contemporary times. The curriculum consists of a video docu-drama accompanied by a curriculum resource guide. The docu-drama portrays the story of Cody, an adolescent boy of Lakota Sioux and Salish heritage who visits his Coast Salish relatives in the Northwest. Cody has the opportunity to learn about issues of relevance to the survival of the salmon through traditional Coast Salish educational experiences. These experiences illustrate a variety of traditional indigenous modes for promoting the comprehension of information and portray intersections with Western knowledge bases.

Historically, the oral tradition has played a dominant role in the educational process for children of Coast Salish heritage. The Shadow of the Salmon curriculum builds on this tradition by involving an adult (e.g., teacher or SLP) and a small group of students in active and frequent dialogue or “instructional conversations”. These conversations allow the adult to model and to make explicit the communication and problem-solving patterns expected in the school setting. At the same time, students can draw upon their strengths associated with the oral tradition to actively contribute to the group's understanding of the topic at hand. Among the activities of the program, students discussed values/beliefs/customs depicted in the video. They analysed multiple solutions for saving the salmon, comparing Native and Western thought, and they wrote a letter to the editor of a local newspaper presenting a persuasive argument relating historical events, such as treaties between US government and American Indian tribes, and the current status of the salmon. These curricular materials provide a foundation for SLPs who are looking for ways to provide culturally- responsive intervention for indigenous students.

Conclusion

The WRD proposed nine recommendations to promote equitable access to culturally-appropriate services for persons with disabilities The PRECEDE-PROCEED framework described in this article addresses three of these recommendations:

• involve people with disabilities;

• invest in specific programs and services for persons with disabilities; and

• improve human resource capacity to ensure non-discrimination and participation.

By employing the PRECEDE-PROCEED framework, SLPs can develop specific programs and services for PWCD from diverse backgrounds, rather than require that they accept services as implemented in the dominant culture. SLPs accomplish this by involving persons within the community, including those with disabilities, in the program planning and implementation. In the process, they develop an awareness of the values and beliefs of the persons they are seeking to serve. This knowledge can increase their cultural competence, and, as a result, their ability to reduce discrimination of culturally-diverse PWCD and facilitate their participation in intervention/ rehabilitation programs.

Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.