Childhood and Assistive Technology: Growing with opportunity, developing with technology

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ABSTRACT

Assistive technology is instrumental for the development and participation of children with disabilities by enabling their communication, mobility, and self-care. Technology also allows each child to explore the worlds of family relationships, friendships, education, play, and household tasks, enhancing their quality of life and that of their families. However, for the vast majority of children with disabilities, inadequate or no access to assistive technology excludes them from education, health, and social services, resulting in lifelong consequences to their participation in civic life and employment.

The rights of children with disabilities, as described in the CRC and CRPD, require a systemic approach to the provision of access to assistive technology. In addition to environmental factors such as the quality of sidewalks for wheelchair users or cultural attitudes for those that require eyeglasses or prostheses, obstacles include: lack of awareness of the existence of certain technologies; absence of public policies supporting local availability and affordability; lack of products which have the adequate size, type, or quality; and insufficient personnel to provide referrals, fitting, training, and repairs. Children have additional challenges due to the fact that they are growing and require much more frequent adjustments or replacements of their assistive technology.

KEYWORDS:

• accessible environments
• affordability and availability of assistive technology
• fitting
• referrals
• repairs
• stigma and discrimination
• training

Introduction

Assistive technologies, i.e. products and services ranging from wheelchairs, prostheses, and eyeglasses, to speech and occupational therapy, that maintain or improve an individual’s functioning and independence, participation, or well-being; are instrumental for the development and participation of children with disabilities. By enabling their communication (Joseph, 2003), mobility (Shore, 2008), and self-care, technology ensures that each child can explore the worlds of family relationships, friendships, education (Murchland & Parkyn, 2010), play, and household tasks (Adolfsson, 2011). When used properly, assistive technology greatly enhances the quality of life of children (May-Teerink, 1999), and their families (Nicolson et al., 2012). Unfortunately, for the vast majority of children with disabilities, this potential remains unfulfilled (UNICEF, WHO & others, 2015), as inadequate access to assistive technology excludes them from education, health, and social services. These harsh conditions during childhood have lifelong consequences, as participation in civic life and employment remain out of reach.

Improving access to assistive technology for children with disabilities is essential if they are ever going to be fully included (Unicef & others, 2013), in their families, communities (UNICEF, 2013), and society. In fact, complying with the obligations of the Convention on the Rights of the Child (CRC) (Assembly, 1989), and the Convention on the Rights of Persons with Disabilities (CRPD) (Naties, 2007), requires scaling-up access to assistive technology around the world.

Awareness, visibility, and rights

Barriers to mobility, communication, and social acceptance have for too long made children with disabilities virtually invisible to the general public. This has started changing in the last three decades as the efforts of human and disability rights activists brought forth the CRC and CRPD and mobilized societies to acknowledge, count, and work for the inclusion of this large group of citizens.

The CRC includes rights to participate fully in family, cultural, and social life and it specifies rights to survival and the highest attainable standard of health; to protection and care necessary for well-being; to facilities for the rehabilitation of health; to access information and material from a diversity of sources; to education; to freedom of expression; and to develop to the fullest (UNICEF, WHO & others, 2015). Just as importantly, Article 23 of the CRC makes it clear that these rights are as applicable to children with disabilities as to all children and that any needed special care and assistance should be provided for free whenever possible (Assembly, 1989).

Although inconsistencies in the way disabilities are defined across and within countries (WHO & others, 2016), add to the usual challenges of gathering statistics on widely dispersed groups, a 2005 UNICEF report places the total number of children living with a disability at about 150 million (UNICEF, 2005). Common impairments range from autism, blindness, brain injury, and cerebral palsy, to hearing loss, intellectual and learning disabilities, muscular dystrophy, spina bifida, traumatic spinal cord injury, and speech impairments (WHO & others, 2012).

Despite this diversity, it is feasible to dramatically increase the quality of life and societal inclusion of children with disabilities by thinking of the process of inclusion systematically, and adopting policies involving educational and health services; habilitation and rehabilitation services; assistive technology services; and accessibility (Naties, 2007). In fact, this systemic approach is absolutely essential to ensure that children with disabilities can enjoy their rights, as defined in both the CRC and the CRPD.

The CRPD confirms the rights to conditions, which ensure dignity, promote self-reliance, and facilitate the child’s participation in the community on an equal basis with other children. Specifically, the CRPD requires States Parties to ensure access to the physical environment, to transportation, to information and communications, and to other facilities and services open to the public. The convention also states that children with disabilities must be provided appropriate assistance so that they may freely express their views on all matters relating to themselves (Naties, 2007).

Explicit in most of the CRPD is the understanding that these rights cannot be realized without the extensive use of assistive technology (Unit & Public Information, 1994). In fact, assistive technology is mentioned directly in Articles 4, 9, 20, 21, 24, 26, 29 and 32 of the CRPD (Naties, 2007; Unicef & others, 2013). In article 4 and 32, the convention also specifically calls for international cooperation in research and development of assistive technology to ensure its widespread availability and affordability (Naties, 2007). The requirement that assistive technology be provided makes its absence a violation of the rights of children with disabilities (Borg, Larsson et al., 2011).

The right to an inclusive and free primary and secondary education, that is equivalent to that offered to other children living in the same community, is described in Article 24 of the CRPD. In addition to the requirement of reasonable accommodation and support, the CRPD specifies that Braille, alternative script, augmentative and alternative modes, means and formats of communication, and orientation and mobility skills must be taught, which inevitably requires a variety of assistive technologies (Naties, 2007).

Barriers to access to assistive technology for children

Adults with disabilities face many barriers to accessing assistive technologies, but these obstacles are even more substantial for children (WHO & others, 2016). In low- and middle-income countries (LMICs), where the vast majority of children with disabilities reside, having little or no technology also means exclusion from academic, social, and community participation (WHO & others, 2016). Of course, having a disability does not imply an absence of other serious difficulties, quite the contrary. Children with disabilities also often face additional discrimination and social exclusion based on age, gender, social status, language, ethnicity, religion, living in conflict zones, and more (UNICEF, WHO & others, 2015). Girls with disabilities face an even higher rate of discrimination and abuse (WHO & others, 2012).

In practice, the general absence of assistive technology for girls and boys with disabilities results in lower rates of primary school completion (UNICEF, 2013), higher rates of unemployment and poverty later in life (WHO & others, 2016), and reduced household income due to care-taking requirements (UNICEF, 2013). In fact, caretaking needs often result in lower earning potential for siblings of the child with disability, as one or more of them usually will stay home and assume the role of primary caregiver.

While many of these difficulties can be ameliorated through the use of adequate assistive technologies, the effectiveness of these technologies depends to a great extent on the physical, social, and technological environment that surrounds the child. For example, the value of a wheelchair is dramatically reduced when ramps are not available; hearing aids are not helpful if batteries are too expensive; eyeglasses become ineffective if social norms make children embarrassed to wear them in public; and screen reading software on tablets and computers becomes cumbersome or even useless if the digital book or website was produced with inadequate labeling and formatting (Stucki et al., 2007).

Environmental barriers are the clearest illustration of why assistive technology on its own is not sufficient, and a systemic strategy is required. When a society is committed to improving services related to school environment, community activities, government agencies, communication and transportation services, and informal social networks, as well as laws, regulations, rules, attitudes, and ideologies (UNICEF, WHO & others, 2015), then children will get the full benefit of assistive technology (Alquraini & Gut, 2012).

In addition to environmental obstacles, children with disabilities encounter a number of barriers which are specific to the field of assistive technology. The most important of these barriers are lack of awareness, governance, services, products, human and financial resources, and the inaccessibility of most environments.

Lack of awareness

Too often neither children, their families nor teachers are aware that a specific assistive technology exists and could be helpful in overcoming their disability (Eide & Kamaleri, 2009; Kamaleri & Eide, 2011; WHO & others, 2011).

Lack of governance including legislation, policies, and national programmes

Out of the 114 countries, which responded to the 2005 “Global survey on government action on the implementation of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities,” 48% did not have policies in place relating to the provision of assistive technology, and half had not passed relevant legislation. This is very challenging for children and their families, given the importance of government policy at every level of the education system.

Lack of services

Services related to assistive technology are scarce and distant from where most children with disabilities live (WHO & others, 2011), non-governmental organizations (NGOs), rarely have sufficient resources to reach an entire country (WHO & others, 2011), and NGOs tend to offer services related to a short list of disabilities and technologies (Borg et al., 2009).

Large inequities in access to technology are found among children with disabilities from different countries, regions, income levels, and ages; but also among those with different impairments, cultures, and languages. For example, it is virtually impossible for girls with disabilities to have access to assistive technology when the relevant service is staffed entirely by men (Bigelow et al., 2004; François et al., 1998; Lindsay & Tsybina, 2011; Loeb & Eide, 2004; Matsen, 1999; May-Teerink, 1999; Olusanya, 2004; UNICEF, 2013).

Lack of products

The quantity, quality, affordability, and variety of assistive technology products available in most countries is rather limited. Many markets are not large enough for efficient production lines. Even if local work is limited to final assembly and adjustments, this too can be unnecessarily difficult and expensive due to import duties and complicated and time-consuming customs procedures (WHO & others, 2011).

In addition, sometimes design changes are needed (i.e. local research and development), as not all technologies are appropriate for all locations (Borg, Lindström et al., 2011). It is crucial that product design conforms to physical, social, and cultural requirements or demand will be too small to sustain production for the local supply chain (Lysack et al., 1999; J. Mulholland et al., 2000; S. Mulholland et al., 1998; Scherer et al., 2005). For example, hearing aids need extra protection from humidity in some markets, while wheelchairs might require a more rugged design in some regions. These factors are particularly relevant for children as their AT tends to require replacement more frequently due to growth and wear and tear.

Inaccessible environments

As described above, environmental barriers can range from physical to cultural or even technological. Regardless of the specific barrier, they dramatically reduce the effectiveness and availability of assistive technologies and thus reduce their local appeal. A wheelchair is much less effective without ramps, hearing aids are significantly less helpful without a reliable source of affordable batteries, and prostheses and other aids can become unaffordable due to import duties. Further, the entire logistics of supply and maintenance, as well as the other barriers discussed, are greatly exacerbated by armed conflicts and natural disasters (WHO & others, 2011). These factors are especially challenging for children, who are much more physically and psychologically vulnerable.

Lack of human resources

In too many countries, the number of trained personnel is insufficient, so referral, assessment, prescriptions, rehabilitation services, and equipment maintenance, repairs, and local adaptations or manufacturing are too expensive, inconsistent, or entirely unavailable (Jensen et al., 2004a, 2004b; Magnusson & Ramstrand, 2009; Pearlman et al., 2008; WHO & others, 2016). While this is a substantial barrier for all persons with disabilities, inadequate referrals, assessments, prescriptions, and other guidance can have lifelong consequences when these happen during childhood.

Financial barriers

The various obstacles described above add-up to a substantial cost barrier, as all these factors together make it expensive to find, choose, acquire, maintain, and repair assistive technologies (Borg et al., 2009; May-Teerink, 1999; WHO & others, 2011). Since technologies require adjustments or regular replacement as children grow, these costs are even higher for this segment of the population (UNICEF, 2013). Too often countries have inadequate budgets or even no funding for assistive technology, which then leaves the majority of children with disabilities entirely dependent on much smaller private sector organizations.

Recommendations – every challenge an opportunity

Most public administrators will recognize the financial challenges and lack of national programs described above. In addition, many parents, teachers, children, and occupational therapists know about lack of access to services, inaccessible environments, lack of products, and inadequate awareness described above. In general, the barriers that challenge children with disabilities’ day-to-day are known, even if this knowledge is not systematically shared among all stakeholders and the reasons behind each barrier are not always clearly understood. Perhaps, the greatest challenge is being able to look at disability holistically and design and implement a strategy that can sustainably and scalably overcome these obstacles.

Part of this great challenge is the fact that every country has its own specific strengths and weaknesses, and every disability has its own particularities, so generic approaches are not likely to be workable. Yet, much is already known about effective interventions, and we hope that by highlighting some of these, this paper might be useful for all stakeholders as they adapt these ideas to local realities and rethink how childhood can be experienced by children with disabilities.

Early childhood

It is well understood that the earlier in a child’s life that an experience takes place, the greater the long-term consequences of both beneficial and detrimental experiences. With this in mind, stakeholders can maximize the positive impact of their actions by prioritizing the early childhood period.

It is too easy to accidentally overvalue the significance of latter achievements such as a high school or university graduation, while undervaluing earlier accomplishments such as learning to speak, walk, or read. Yet, the earlier the accomplishment, the greater its impact and the likelihood of subsequent achievements. This is well understood (Modica et al., 2010), and yet the benefit and practicality of providing AT for children with disabilities to play at a very early age is still not routine (Judge, 2006). The powerful positive impact of early childhood interventions must be more widely understood and recognized as relevant even for the most severely disabled children (Campbell et al., 2006).

Learning to play and playing to learn

Just like the importance of early childhood interventions, the enormous value of play is still too often unrecognized. Children’s entire understanding of the world, their ability to speak, and eventually their skill at reading and writing can benefit greatly from the stimulation and learning that takes place, while they play with the simplest toys. Play is seen as essential for the social emotional, motor, language and literacy development, and self-help skills (Hoffman, 2017). In fact, play is so powerful that it can even help children cope in situations of crisis (Chatterjee, 2018).

Finding and acquiring toys, which are adapted to the abilities of children with disabilities (Jansens & Bonarini, 2020), can be difficult, so even in wealthy societies there is an increasing use of toy libraries (Kapellaka, 1992). Just as importantly, thanks to the growing interest in inclusive playgrounds in wealthy societies, there is now ample information on practical steps to make these spaces more inclusive (Fernelius & Christensen, 2017). Purchasing or building accessible spaces is more effective and affordable than adapting poorly designed spaces (REF). This highlights the importance of having universal design requirements written into public procurement and other regulations (Catanese, 2012).

Finally, opportunities abound for the use of effective techniques which require no physical infrastructure. Even in wealthy societies, much more can be done to use activities at home and at childcare facilities to prepare children with disabilities for literacy (McDonnell et al., 2014). When an adult tells or reads stories to children, their intonation and facial expressions create an auditory and visual connection to the emotions being represented; helping children become more aware of emotions in themselves and others. Stories also offer opportunities to have conversations where children can talk about different aspects of the stories, such as problems faced and resolved by various characters, gaining confidence as they are able to retell the story (Santos et al., 2012).

High impact low technology

Even though there is no denying how powerful a talking computer, a hearing aid, or a motorized wheelchair can be for those who need them, there is today a tendency to overlook how helpful low technologies can be in many circumstances. Velcro strips or magnets can hold toys or labels and letters in place; highlight tape or a marker can make keywords conspicuous; and a rolled-up towel can serve as a bolster and simple pillows as support. This of course does not negate the very real need for investing in more sophisticated AT, but much assistance for children with disabilities can be provided through low-cost and simple tools (Judge, 2006).

Sharing expertise

Since to a large extent each disability has its own challenges and solutions, there is great value to be had in increasing cooperation and information sharing among parents, teachers, and other experts through both virtual and in-person groups. Mutual support groups can be extremely helpful, not just in sharing solutions, but also for emotional support (Solomon et al., 2001).

In addition, information sharing across all groups, parents, teachers, and experts can greatly enhance the support provided to children with disabilities, prevent unrealistic expectations regarding AT among parents, and reduce AT abandonment among other benefits (Judge, 2006).

Social norms need not be barriers

Ultimately, a great deal of the experience of growing up with a disability will depend on the attitudes and behaviors that children live with and learn from their parents, teachers, and classmates. Since behaviors and attitudes are so important in the mental and physical development of children with disabilities and can also affect how AT is selected, used, or even abandoned (Parette & Scherer, 2004), it is worth looking at a few strategies that have been helpful in this regard.

As might be expected, offering training and support to teachers and caretakers is extremely helpful (Stoner et al., 2008), but other strategies have a greater impact than might be imagined. For example, children’s perceptions change through the simple presence of a character with a disability in a book or film, even if the character is not a protagonist. Perceptions of disability in the general population also become more positive when exposed to sporting events with persons with disabilities (Unicef & others, 2013).

There have also been documented experiences where teachers have provided emotional support to parents (Kayama & Haight, 2014), structured exercises during mealtime to improve verbal skills in children (Spohn et al., 1999), and even helped screen and assess children from the perspective of potential disabilities (Unicef & others, 2013). This is especially valuable when there aren’t enough trained experts available.

In sum, the number and diversity of ways in which a child’s development and inclusion can be supported and encouraged is as diverse as children themselves. Although the challenges remain abundant, they can be seen and understood as opportunities for greater care and attention to the many ways in which people and institutions, formal and informal, can be improved to better serve this remarkable community.

It takes a community to include a child

Enabling adequate access to assistive devices and related services (including rehabilitation) resembles in many ways the process of educating a child to its full potential. Just as education cannot be limited to what happens at school and is the result of the contributions of an entire community, so it is with access to AT, rehabilitation, and inclusion in general.

The most credible and widely used strategy of ensuring that children with disabilities are included in a way that is comprehensive, sustainable, scalable, and affordable is known as Community-Based Rehabilitation (CBR), and more recently as Community-Based Inclusive Development (CBID) (CBM, 2021). This approach involves everyone, from parent to teacher, physical and other therapists, community health worker, organizations of persons with disabilities, and others, in awareness-raising, training, service provision, and resource allocation, to each according to their role, but always with the needs of the family and child at the center. The CBR approach encompasses the individual’s education, health, social life, livelihood, and empowerment (WHO, 2015).

CBR recognizes that the deep understanding of context, both by the individual and the community, is as valuable as, and must complement AT-related technical knowledge. This combination of context and technical expertise, means that some services which are essential for the proper use of assistive devices, can be provided locally, and the choice of devices is much more likely to be appropriate to individual needs. These are essential benefits in the context of low-resource settings (Musoke & Geiser, 2013).

Scale and sustainability require data

It is known that new public policies usually start with pilot projects so that they may be adjusted before large-scale implementation. It is also well known that scaling-up requires a level of national coordination, capacity building, and policy consistency over time, which tends to be much more challenging than pilot projects. What is less known, is the importance of data in ensuring that decision-makers have the information they need to adjust and sustain AT-related policies over time and at scale, so that innovative policies do not end the level of pilots (Edyburn, 2003).

Ensuring that data is collected in a way that disaggregates children with disabilities (Abualghaib et al., 2019), by criteria such as age, disability, and access to AT, and is nationally available and universally comparable (WHO, 2018), as well as updated over time, is absolutely essential in improving access to AT. It is data that gives visibility to barriers such as gaps in awareness, training, or funding, which can then be addressed by policymakers; it is data that validates helpful changes to policies and fruitful cooperation between public and private sectors, as well as civil society organizations such as OPDs. Access to reliable and detailed data enables the gradual transformation of isolated AT provisioning initiatives into a national system to improve outcomes for AT users (Edyburn & Smith, 2004).

Conclusion

There is ample support in both the CRC and the CRPD for the provision of assistive products and related services to children with disabilities, as well as improvements in the overall physical, institutional, and social environment, so they may develop to their full potential. This is entirely justifiable given the dramatic impact that assistive technology can have on the quality of life and productivity of children with disabilities and their families.

Unfortunately, there is also extensive evidence that the vast majority of children with disabilities have neither access to assistive technologies nor physical or cultural environments, which are conducive to their inclusion. The opportunity remains to enable a dramatic improvement on the quality of life and future employment prospects of millions of children by investing in the reduction and eventual elimination of all barriers currently preventing the full participation of children with disabilities in family, community, and civic life.