The objective of this study was to identify issues arising in information infrastructure development so that the Japanese public, regardless of whether they have a disability or not, can easily obtain and use information necessary for everyone in a care-centered society, while mutually respecting their personalities and individuality. Furthermore, we wanted to generate proposals that work towards improving information accessibility. We conducted a symposium entitled “Building bridges in support of communication: The search for methods in support of overcoming various communication barriers” during the course of the Health and Labor Sciences Research Grant-funded Comprehensive Research Project on Disabled Persons Policy (Physical and Intellectual Disabilities Sector). This symposium dealt with research related to effective support methods for information assurance among persons with communication difficulties (research representative: Tomoko Tachibana), and through speeches and discussion, issues related to the improvement of regional information accessibility were identified. These issues could be organized into the following themes: the “need for a revolution in awareness toward ‘the main concerned parties’ and for greater public awareness, including among health care workers and providers of health and welfare nursing services, of the various disability support services available to regional residents”; the “need for surveys
and information on the views of the concerned parties”; “the promotion of sharing of pioneering approaches among local government authorities through construction of information sites”; and “the promotion of the construction of an integrated support system based on reasonable, efficient, and effective ‘equipment’, ‘people’, and ‘software’.”
In recent years, we have assessed the promotion of disability health and welfare policy, and conducted research aimed at re-evaluating these policies from the perspective of trauma prognosis. Considering the policy trends in recent years involving regional health care, medical treatment, welfare, and nursing for disabled persons, we can infer that promoting evidence-based disability health and welfare policy is essential for improving information accessibility in regional care-centered societies. Thus, the “enrichment of information content necessary for the creation of subjective health promotion” should be added to the “barrier-free use of information” detailed in the Disabled Persons Basic Law. To achieve this goal, this article proposes the construction of a disability registry database, from the perspective of “clinical efficacy information,” which is the patient information related to the diagnosis, treatment process, treatment efficacy, etc. of patients examined and/or treated at all medical institutions in Japan.
With regard to welfare assistance for those who have difficulty communicating, from the perspective of resolving issues related to previous communication support the "Disability People Assistance Law" was enacted in April, 2013. According to the law, municipalities and prefectures Efforts concerning communication carried out by the community, the division of roles are organized, the communication support business is strengthened, training of communication support personnel is said to be an indispensable project carried out by the municipality, Efforts for support are under way.
It is necessary for patients, caregivers, and health care professionals to share the information of patients’ symptoms and patient-reported outcomes (PROs) to control their symptoms and maintain the function of affected organs. Speech, writing, and keyboard inputs become gradually impractical for patients with a variety of incurable and progressive neuro-muscular diseases, including amyotrophic lateral sclerosis (ALS). At present, when patients would like to express their thoughts and wishes, they are supported by “communication carers” using a transparent character board and a mouth-shape character method. They may also use communication devices operated with existing switches, which include contact, capacitive, photoelectric, breath, air-bag piezoelectric, and eye-tracking types. However, patients gradually become unable to manipulate any type of switch as their disease progresses. The development of a new interface device, which patients can use despite an inability to intentionally move their body parts, is now in demand. The mechanism of a newly developed device, termed the "Cybernic Interface, CyinTM", is based on Cybernics, a form of technology used in the cyborg-type robot Hybrid Assistive Limb. Our research group tested the usefulness and adverse events related to using its investigational device model, a Cybernic Interface AI02, in the clinical trial (JMACCTID: JMA-IIA00280). Fifteen patients with incurable and progressive neuromuscular diseases (12 with ALS and 3 with Duchenne Muscular Dystrophy) could successfully use AI02. A full clinical study report will be published elsewhere in the future. The cost of communication devices containing a Cybernic Interface, CyinTM may be reimbursed as a “grant for prosthetic devices” according to the Services and Supports for Persons with Disabilities Act.
Information and communication technology (ICT) has improved dramatically over the years, and its new capabilities have helped improve the quality of life of patients with disability. Indeed, some patients without the ability to communicate are perceived as lack thinking capability , but once they obtain a method of communication, they might appear to have a similar level of thinking ability as healthy people.
These technologies were primarily developed for purposes other than to benefit patients with disabilities, becoming available only after the target user was changed. Notably, a technology designed for a specific type of disability can be used for other types of disabilities. For this reason, it is important to know what technology is currently available.
This review is to summarize the current technologies used in Japan and throughout the world that can offer communication support for patients with disability
Objectives: The basic plan for persons with disabilities , which details the philosophy underlying the Comprehensive Support Law for Persons with Disabilities, has emphasized the necessity of supporting the intentional communication of persons with disabilities and improving their information accessibility. Augmentative and Alternative Communication (AAC) refers to the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. Systematic classification of the AAC methods for each type of disability is necessary to promote the creation of an environment with sufficient information accessibility. In this study, a literature review was performed on the AAC methods required for each type of disability.
Methods: A search for academic papers was conducted using a search formula based on AAC-related search terms on the ICHUSHI Web of the Japanese Medical Literature Database, etc. The identified articles were screened by title, abstract, and text, and the AAC methods used were classified for each type of disability. The types of disability considered included vision disorders, hearing disorders, blindness, developmental disorders (including autism), intellectual disorders, higher cerebral dysfunction (e.g., aphasia), intractable diseases resulting in severe physical disability such as ALS , and others.
Results: Ninety-eight articles were included. For vision disorders (seven articles, 7.1%), AAC methods were classified into augmentation of visual function and conversion to auditory and tactile information. Similarly, for hearing disorders (seven articles, 7.1%), AAC methods were classified as the augmentation of auditory function and conversion to visual and tactile information. As for developmental disorders (10 articles, 10.2%), intellectual disorders (11 articles, 11.2%), and higher cerebral dysfunction (seven articles, 7.1%), the AAC methods were classified as conversion to visual or auditory information in accordance with the characteristics of the communication difficulty. Finally, AAC methods for intractable diseases causing severe physical disability (46 articles, 46.9%) were classified as reinforcement of motor function corresponding to the progression of symptoms.
Conclusions: AAC methods were classified according to the disability for which they were used, which helped clarify how AAC can be applied regardless of the type of disability. However, AAC methods should ideally not be classified according to the type of disability, but rather by the cause and degree of communication difficulty. From now on, it is hoped that AAC research will proceed with this point of view to promote the creation of an environment with sufficient information accessibility.
Aphasia refers to the inability to comprehend and formulate language because of brain damage typically caused by a cerebrovascular accident, etc. The speech or language of a person who has been diagnosed with aphasia is significantly impaired in four communication modalities, including auditory comprehension, verbal expression, reading and writing, and functional communication.
Aphasia affects numerous aspects of individuals’ lives. Living with aphasia causes long-term changes in not only language and communication style, but also in lifestyle, including one’s job. Furthermore, in some cases, aphasia can lead to problems with social adaptation.
Though the conditions of adults with aphasia are often severe, they are not fully supported under the law. In 2015, the government examined the Services and Supports for Persons with Disabilities Act, and made a necessary revisions to the act based on the results of this examination. The Ministry of Health, Labour and Welfare has also conducted research on training and dispatching communication supporters. According to the results, in 2016, they devised training programs for communication supporters with the aid of the Japanese Association of Speech-Language-Hearing Therapists. In 2018, prefectures will begin to offer community life support services, among other services. These might offer good opportunities to enhance support for adults with aphasia.
To support the adequate communication of blind and visually impaired people who are print-disabled, reading and writing, braille transcription, and audio recording services are provided both publicly and privately. We conducted a user survey on these human-assisted services. We also conducted another user survey on the usage of Information and Communication Technology (ICT) devices such as mobile phones (keitai), smartphones, tablets, and personal computers by blind and visually impaired people. The results of these surveys revealed no significant differences in the usage rate of the human-assisted services and ICT devices by residence. However, a few respondents noted that service providers were limited in their residences. Furthermore, specifically regarding the usage of ICT devices, most smartphone or tablet workshops were held in three major metropolitan areas (Tokyo, Osaka, and Nagoya) in Japan. These points can be regarded as differences among residences.
Objectives: Because autism spectrum disorders are not regarded as pure impairments but rather disabilities, their prevalence can be greatly influenced by the degree of social exclusion . Additionally, social adaptation based on the medical model has been regarded as the goal of support for these individuals. In order to realize support for individuals with autism spectrum disorders based on the social model of disability, we reinterpreted communication difficulties as the outcome of insufficient informational support, which cannot be attributed to individual impairments. The research objectives were as follows: (1) to investigate the impairments specific to each individual, and (2) to design informational support based on an understanding of these impairments.
Methods: Since 2008, in collaboration with Ayaya, an individual diagnosed with an autism spectrum disorder, we have been conducting user-led research on person-specific impairments. We have explored two points in particular: extraction of trans-situational patterns from Ayaya’s subjective experiences and narrative integration of one-time episodes. For the latter, Ayaya has been collaborating with peers who have had similar experiences in 2011. In addition, since 2012, we have conducted experiments to verify hypotheses concerning the impairments identified in the user-led research conducted in parallel.
Results: Regarding impairments related to informational support, we found that the granularity of recognition patterning of symbols (e.g., voices and letters), as well as objects and events that they referred to, was finer than was that of typically developing individuals. In the transmission of vocal information, specific examples of informational support included the use of personal computers and sign language, soundproofed rooms, communication styles without simultaneous utterances, and utilizing writing instruments, and shorter interview times , etc. In transmitting written information, the use of a font called Comic Sans, adjustment of character size and line spacing, and the use of non-glossy paper and a light brown background color were recommended. Additionally, synchronous presentation of multimodal information was generally effective. Finally, regarding the recognition of objects and events, synchronous multilingual information presentation using both spoken language and Japanese sign language, as well as ex-post “assistance to co-produce meanings,” were effective.
Conclusions: Because the impairments of individuals diagnosed with autism spectrum disorders are highly heterogeneous, the information support suitable for each person is similarly diverse. Therefore, it is advisable to conduct user-led research on individual subjects utilizing our research methods.
Objectives: The aim of this cross-sectional study was to investigate factors associated with early childhood caries (ECC) in 18- to 23-monath-old Japanese children.
Methods: Study subjects were 2,771 children aged 18 to 23 months. A self-administered questionnaire was completed by parents or guardians of the children. The survey contents included such things as sex, birth weight, the existence of smokers in the home, maternal smoking during pregnancy, nocturnal breastfeeding, snacking habits, parents sharing of utensils with child, and socio-economic status. We obtained the number of decayed, missing, or filled teeth per person (dmft) via dental examination. Logistic regression analysis was performed to estimate odds ratio of ECC.
Results: The average number of decayed, missing and filled teeth (dmft index) was 0.11. The prevalence of dental caries was 3.2% (90/2771). Nocturnal breastfeeding habits were documented in 668 subjects (24.1%). Environmental tobacco smoke (ETS) was reported for 1,704 children (61.5%). After excluding items of multicollinearity, the results of multivariate analysis were as follows: the existence of smokers in the home, the number of smokers, nocturnal breastfeeding, breastfeeding more than or equal to 18 months, drinking or eating sweets after dinner, and high birth weight were significantly associated with the risk of ECC.
Conclusions: This study suggests that ETS from family members, nocturnal breastfeeding, prolonged breastfeeding, high birth weight, and snacking habits are correlated with ECC.