Theme E: Disabilities: Analysis models and tools

This paper presents the topics and the activity of the theme E “disabilities: analysis models and tools” within the GDR STIC Santé. This group has organized a conference and a workshop during the period 2011–2012. The conference has focused on technologies for cognitive, sensory and motor impairments, assessment and use study of assistive technologies, user centered method design and the place of ethics in these research topics. The objective of “bodily integration of technique” workshop, organized in the framework of Défi Sens (CNRS) was to develop a multidisciplinary approach (physiology, robotics and anthropology) of the relationships between body and technology taking as an example the prostheses for the compensation of sensorimotor disabilities. Efforts will focus on strengthening the development of a multidisciplinary research for the design of assistive technologies for elderly people and people with disabilities. The modelling of the user's abilities and the designing of adaptable AT to the needs of the person will be carried out with other groups of this GDR and also with other GDRs.     

Japanese Business Organizations' Level of Familiarity with Assistance Dog Legislation and Their Acceptance of These Dogs in the Workplace

ABSTRACT

In 2003, Japan passed the Act on Assistance Dogs for Persons with Disabilities, requiring public facilities, public transport, and private businesses serving the general public to allow access for people with physical impairments who use assistance dogs. One purpose of this law is to enable people with disabilities to lead independent and fulfilling lives as active members of society. In order to achieve this goal, the law requires public facilities such as national institutions and public transport, as well as private businesses serving the general public, such as hotels and restaurants, to allow access to people with physical impairment accompanied by assistance dogs. In 2007, the law was amended to stipulate acceptance to the workplace of people with a physical impairment accompanied by an assistance dog. We conducted a questionnaire survey of 6,062 business owners covered by the legislation, to ascertain the extent of knowledge of the law and acceptance of assistance dogs. In cases where the respondents had not employed any assistance dog users, they were also asked about the possibility of employing them in the future. The results indicate that assistance dog users are seldom accepted in the workplace, and familiarity with the law has not improved since the last survey in 2004, despite the 2007 amendment which is directly applicable to employers. Regarding the attitudes toward employment, most business owners answered that they would not or might not employ an assistance dog user. The level of knowledge of the law and the related financial support system differs among facility owners carrying out different types of business. Those positive toward employment tended to know much about the Act on Promotion of Smooth Transportation, etc. of Elderly Persons, Disabled Persons, etc. These findings suggest that there is a need for better dissemination of information about the obligation to accept assistance dog users in the workplace, of information about the users' obligations, how to cope with problems, and accessing consultation services.     

What Should Dental Services for People with Disabilities Be Like? Results of an Irish Delphi Panel Survey

Background

This study aimed to generate prioritised goals for oral health services for people with disabilities as a first step in meeting the need for evidence based oral health services for people with disabilities in Ireland.

Methods

The study used a three round modified e-Delphi method, involving dental service professionals and people with disabilities or their representatives, in Ireland. Three rounds were completed online using SurveyMonkey. Round 1 asked: “List what you think dental services for people with disabilities in Ireland should be like.” Items for subsequent rounds were generated from responses to Round 1. Round 2 and Round 3 used 5 point Likert scales to rank these items by priority: from No Priority (1) to Top Priority (5). Consensus was achieved on each item where at least 80% of respondents considered an item either High or Top Priority. A consensus meeting concluded the process.

Results

Sixty-one panelists started and 48 completed the survey. The Delphi panel agreed on level of priority for 69 items and generated 16 consensus statements. These statements covered a range of topics such as access to care, availability of information and training, quality of care, dental treatment and cost. A recurrent theme relating to the appropriateness of care to individual need arose across topics suggesting a need to match service delivery according to the individual''s needs, wants and expectations rather than the disability type/diagnosis based service which predominates today.

Conclusions

This process produced a list of prioritised goals for dental services for people with disabilities. This creates a foundation for building evidence-based service models for people with disabilities in Ireland.     

Assessment of objectively measured physical activity levels in individuals with intellectual disabilities with and without Down's syndrome

Objective

To investigate, using accelerometers, the levels of physical activity being undertaken by individuals with intellectual disabilities with and without Down''s syndrome.

Methods

One hundred and fifty two individuals with intellectual disabilities aged 12–70 years from East and South-East England. Physical activity levels in counts per minute (counts/min), steps per day (steps/day), and minutes of sedentary, light, moderate, vigorous, and moderate to vigorous physical activity (MVPA) measured with a uni-axial accelerometer (Actigraph GT1M) for seven days.

Results

No individuals with intellectual disabilities met current physical activity recommendations. Males were more active than females. There was a trend for physical activity to decline and sedentary behaviour to increase with age, and for those with more severe levels of intellectual disability to be more sedentary and less physically active, however any relationship was not significant when adjusted for confounding variables. Participants with Down''s syndrome engaged in significantly less physical activity than those with intellectual disabilities without Down''s syndrome and levels of activity declined significantly with age.

Conclusions

Individuals with intellectual disabilities, especially those with Down''s syndrome may be at risk of developing diseases associated with physical inactivity. There is a need for well-designed, accessible, preventive health promotion strategies and interventions designed to raise the levels of physical activity for individuals with intellectual disabilities. We propose that there are physiological reasons why individuals with Down''s syndrome have particularly low levels of physical activity that also decline markedly with age.     

Physical Activity and Welfare of Guide Dogs and Walking Activity of Their Partners

ABSTRACT

Appropriate physical activity is beneficial for physical and psychosocial wellbeing, and it is recommended for people to have 30 minutes of activity on most days of the week, to yield 150 minutes per week. Getting sufficient physical activity particularly challenges people with visual disabilities, and few health-promotion interventions have focused on adults with this disability. Recently, dog walking has been promoted in communities as a way to increase people's physical activity. We surveyed guide-dog partners to assess whether their guide dogs facilitated walking. We also assessed the welfare of these dogs, including their physical activity and social interactions with other dogs and people, especially as there is some concern that these dogs have too little freedom. For comparison, we assessed large and small companion dogs and their handlers, as well. A web-based survey was conducted among people living with guide dogs or companion (pet) dogs: large companion dogs (51 lb or more) and small companion dogs (50 lb or less). Guide-dog partners walked significantly more than handlers of either small or large companion dogs (Guide-dog partners met the healthy standard of 150 min per week of walking, at a level 10 times more than owners of large companion dogs). Guide dogs walked with their partners more frequently and for longer durations per day than owners of companion dogs. Guide dogs with their handlers met more people outside of their homes than did owners of companion dogs, but the groups did not differ in the number of dogs they greeted outside of the house. The frequencies of going to off-leash areas did not differ among the three groups. The findings indicate that having a dog as a guide can lead to a higher amount of walking among guide-dog partners, and that guide dogs have a higher quality of life, in terms of quantity of physical activity and social interactions, compared with large or small companion dogs.     

“Nudging Them Back to Reality”: Toward a Growing Public Acceptance of the Role Dogs Fulfill in Ameliorating Contemporary Veterans' PTSD Symptoms

ABSTRACT

There is a long history of service dog usage to assist people with physical disabilities (e. g., dogs for the blind, deaf, and disabled). In comparison, however, relatively little empirical research has been conducted into the use of service or emotional support dogs for people with psychiatric disabilities (e. g., PTSD, bipolar disorder, anxiety disorder and schizophrenia). Given this research shortfall, the present study sought to provide insights into the post-war dog ownership experiences of contemporary veterans from the Iraq and Afghanistan fields of engagement, particularly in relation to the differences adopted dogs have made to the veterans' readjustment back into society. In this regard, reporters' media accounts of the experiences of veterans with PTSD and the general public's social media response comments were subjected to a triangulated three-phase content analysis to explore the role dogs seemingly play in helping contemporary veterans to readjust to civilian life. The core theme to emerge from the study was one of: “‘Nudging them back to reality’: Toward a growing public acceptance of the role dogs fulfill in ameliorating contemporary veterans' PTSD symptoms.” In light of the difficulties of interpreting the accounts of veterans through the filter of media coverage and social commentary, this core finding may prove to provide insights into how contemporary veterans diagnosed with PTSD utilize the assistance of dogs to help deal with their fundamental human needs for safety, affiliation, and succourance. Finally, the difficulties associated with dogs as therapeutic agents are discussed.     

Assisted Dying & Disability

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End‐of‐Life Decision‐Making report, published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision‐making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities.     

Attitudes towards assistance dogs in Japan and the UK: a comparison of college students studying animal care

Abstract

Previous studies have indicated that the primary problems associated with ownership of assistance dogs lie not with the dogs themselves, but with people's attitudes and behavior towards them, including interference with the dog while it is working, and denial of access to public facilities. However, there has been little systematic study of the attitudes of the general public towards assistance dogs. Our study was carried out to compare the knowledge and attitudes of young people in Japan and the UK towards assistance dogs, in order to provide a basis for the future development of assistance dog provision in Japan.

Forty-four Japanese and 42 British college students completed questionnaires in which they were asked about their knowledge of, and attitudes towards, assistance dogs. A similar percentage (about 20%) of the British and Japanese students reported that they were unhappy about allowing the dogs access to places where food is sold. However, the British participants were more likely to be positive about the idea of using dogs to assist people with disabilities than were the Japanese. Attitudes towards assistance dogs varied among the Japanese students. Some considered assistance dogs happier than pet dogs, because pet dogs are sometimes neglected, while others expressed sympathy for assistance dogs because they are strictly trained and exploited by humans. When asked their opinions about the idea of using dogs as assistance dogs, 98% of the British students, but only 41% of the Japanese students, agreed with the idea. Our results suggest that perception of assistance dogs, and also understanding of the well-being of people with disabilities, were both more well-informed and realistic among the British students than among the Japanese students.     

Caring for older people. Money problems and financial help.

Older people make up the largest low income group in the United Kingdom. This article gives an overview of financial help available for older people, including general information, such as pensions and low income benefits, and also particular support for those with disabilities, such as attendance allowance and assistance with residential or nursing home fees. Advice on an individual''s entitlements is available from the Benefits Agency and, particularly for those with disabilities, from social workers.     

Neuroplasticity. Key to recovery after central nervous system injury.

After an injury to the central nervous system, physical and cognitive impairments and disabilities often abate. These gains may be partly mediated by mechanisms that allow reorganizing of the structure and function within gray and white matter. The potential to enhance neurologic recovery by manipulating the brain and spinal cord must now be considered in clinical practice. Today''s rehabilitation routines may not encourage maximum recovery. Indeed, some commonly used physical and pharmacologic methods could inhibit the restoration of motor activities such as walking. On the other hand, therapies that use our expanding knowledge of neuroplasticity could lead to better results for patients.     

Behavior of dolphins towards adults and children during swim-with-dolphin programs and towards children with disabilities during therapy sessions

Abstract

In recent years, dolphin-assisted therapy has become very popular and an increasing number of facilities worldwide offer therapy programs with dolphins. In contrast to other animal-assisted therapy programs, dolphins are not domestic animals; they are mostly caught in the wild and there are still no studies on their behavior during these therapies. However, there is speculation that the behavior of dolphins toward people with mental and physical disabilities may play an important role in the success of the therapy. We observed 83 sessions with five untrained dolphins (Tursiops truncatus) at Dolphins Plus, a fenced area with ocean water in the Florida Keys, USA. Our detailed observations of contact and distance behavior between dolphins and different groups of swimmers (adults, children, and children with mental and physical disabilities) show that, in general, dolphins prefer small humans to adults. One dolphin showed a clear preference toward children with mental and physical disabilities, and we conclude that she showed assisting behavior.     

A rehabilitation ward in a district general hospital: first three years' experience.

The experience of the first three years'' work on a ward for the rehabilitation of patients was reviewed. Adults with physical disabilities or mixed physical and psychological disabilities, including unstable or deteriorating conditions, were accepted for intensive rehabilitation. Most patients had neurological disorders. The ward policy was that each patient had considerable time with the therapist, maximum personal independence was encouraged, and multidisciplinary staff meetings were held to agree the goals of treatment. Much effort was spent helping patients and relatives to adapt to conditions of progressive disability, but the response to questionnaires suggested that these patients as well as those who did improve received some benefit from being on the ward. Overall the benefits of the intensive rehabilitation that was offered on this ward outweighed those from short stays on medical wards.     

Expanding intersubjective awareness: the anthropology of kinaesthetic diversity

When people with widely diverse bodily characteristics collaborate in dancing together, an exploration and communication of movement and embodied knowledge takes place through dialogue and shared practice. Engagement in these activities develops participants’ awareness of and appreciation for kinaesthetic complexities and diverse embodiments, promoting an understanding of bodily difference as contributing to, rather than detracting from, the realm of physical arts and society as a whole. Based on fieldwork conducted in Israel and the United States with integrated dance projects bringing together people with and without disabilities, this article offers an ethnographic analysis that continues the anthropological endeavour of revealing the ways kinaesthetic knowledge (awareness and knowledge of the movement and spatial orientation of one's body) is fostered. Introducing disability into movement theory, I offer an understanding of movement/stasis as a spectrum of ways of moving, looking at what happens when individuals who are different from one another engage in shared, critical reflection upon their movement practices.     

Legal aspects of genetic information

The federally funded Human Genome Initiative will lead to the development of new capabilities to learn about an individual''s genetic status. Legal issues are raised concerning patients'' and other parties'' access to that information. This article discusses the effect of existing statutes and case law on three pivotal questions: To what sort of information are people entitled? What control should people have over their genetic information? Do people have a right to refuse genetic information? The article emphasizes that the law protects a patient''s right to obtain or refuse genetic information about oneself, as well as the right to control the dissemination of that information to others.     

Anomalous Urinary Proteins in Patients with Serum M-Components

Abnormal urinary proteins were investigated in 365 patients with serum M-components; 250 urines were available for study. All specimens were concentrated and processed by electrophoresis and immunoelectrophoresis. An overall frequency of Bence Jones proteinuria was found in 63%, whereas other M-components were detected in 18%. In patients with multiple myeloma, Bence Jones proteinuria occurred in 71%, while M-components in the form of whole molecules of immunoglobulins or as Fc and F''c fragments were observed in 20%. Bence Jones globulin was found in 60% of patients with IgG myeloma, 69% of those with IgA myeloma and 100% of patients with IgD myeloma and light chain disease. In regard to other diseases, Bence Jones proteinuria was found in 44% of patients with macroglobulinemia, in 60% of patients with nonplasmacytic neoplastic diseases and in 28% of patients with non-malignant conditions. Other M-components were detected in the urine of 13%, 14% and 6% respectively.The detection of abnormal urinary proteins in patients with M-components in the serum is an important diagnostic tool and may have prognostic significance.     

Helping disabled people--the user's view.

The main needs for most people with physical disabilities are housing and help with daily living. Thus, many of them will find the new emphasis on social aspects of community care particularly relevant. Peter Swain is a disabled man who leads a project in east Devon which ensures that disabled people have a voice in helping to shape the services they need. In this article he explains how the project, Living Options East Devon, works and how the new legislation for community care might affect disabled people.     

Women's access to health care in Ghana: Effects of education,residence, lineage and self‐determination

Abstract

Women's physical and psychological access to health care was analyzed using the 2003 Ghana Demographic and Health Survey (GDHS), a nationally representative study for monitoring population and health in Ghana. Female respondents from the 2133 cases in the couple's data set were used in this study. Women's level of education was positively related to physical but not to psychological access to health care. Residing in an urban area was positively related to both types of access. Matriliny consistently showed positive effects on physical access. In addition to these demographic factors, both physical and psychological access were positively related to women's self‐determination, i.e., women's right and ability to make real choices about their lives including their health, fertility, sexuality, childcare and all areas where women are denied autonomy and dignity in their identities as women. Self‐determination factors both mediated the effects of background factors on access and added explanatory power to the models.     

Disabling violence: intellectual disability and the limits of ethical engagement

Those giving care to people with intellectual disabilities in the United Kingdom are obliged to drive bad forms of intimacy, such as abuse, out of the caring relationship. They must also enable these individuals to find positive forms of intimacy through reciprocal relationships such as friendships. These two aims are normally separated, but in an organization called L'Arche UK, they are combined in the same relationship when caregivers pursue reciprocal friendships with those they support. What happens to this ethical project when those with intellectual disabilities are violent to their caregivers? Trying to pursue intimate engagement in this context has the unexpected result of creating distrustful and tense relationships, which raises questions not only about why this ethical project goes so wrong, but also about what it would mean for it to go right: that is, what a richer and fully positive reciprocity between limited and complex human beings would actually look like in practice.     

An adaptive model for predicting !Kung reproductive performance: A stochastic dynamic programming approach

A stochastic dynamic programming model is presented that supports and extends work on the reproductive performance of the !Kung Bushmen (Lee 1972; Blurton Jones and Sibly 1978; Blurton Jones 1986), proposing that !Kung women and their reproductive systems may be maximizing reproductive success. The stochastic dynamic programming approach allows the construction of a whole-life model where the physical/environmental constraints along with the uncertainty about future events !Kung women face when making reproductive choices can be explicitly built in. The model makes quantitative predictions for the optimal reproductive strategy assuming !Kung women are maximizing expected lifetime reproduction (ELR) given the physical parameters of !Kung life.The model relies on data gathered from the works cited above and some considerations from simple probability theory. The model predictions for optimal birth spacing match the !Kung reproductive data very well and support earlier findings (Blurton Jones and Sibly; Blurton Jones 1986). The utility of the dynamic modeling approach is illustrated when the effects of varying certain model parameters are investigated.By including the effect of the mother's mortality, which was not included in the Blurton Jones and Sibly (1978) analysis, the model allows for further exploration of the application of an adaptive approach to human reproductive performance. By adding some considerations about the risks of childbirth for the mother the model not only predicts optimal birth spacing, which is site specific, but also predicts the optimal time for a woman to begin and cease having children. These predictions coincide with menarche and menopause and shed light on their possible adaptive value.