Disability Studies Quarterly
Winter 2005, Volume 25, No. 1
<www.dsq-sds.org>
Copyright 2005 by the Society
for Disability Studies


Disability and Nutrition Therapy:
Governmental Communication in the Information Age

Dana Lee Baker, Ph.D., Assistant Professor
E-mail: bakerdan@missouri.edu

Angela Marie Meers, Masters Student

University of Missouri-Columbia


Introduction

In the current era of increasing public involvement in governance, how information is communicated is a rapidly changing arena of government power and responsibility. Put differently, communication of information can be studied as an element of the socially-constructed public infrastructure. The government's role in providing information to the public is especially interesting to examine when the content of the information is subject to scientific debate. One such area of debate involves nutritional therapies for children with disabilities or chronic illness. This article examines how state agencies serving children with disabilities or chronic illness communicate knowledge of nutrition therapies to parents or primary caregivers.

As a result the similarities of the information (and other) needs, government efforts related to nutrition often serve children with chronic illness as well as children with disabilities but without active illness. All are targeted for individualized nutritional therapy because professionals believe that such an intervention will stabilize their health and/or impairment status. Our interest in these efforts reflects the interplay of increased consumer control and access to information on one hand, with the roles of science and government in generating and conveying information, on the other hand (Corker & French, 1999; Longmore & Umansky, 2001).

Statement of the Problem and Research Questions

In contrast to the past, when the main challenge for government in getting nutrition-related information to the public was a scarcity of information to distribute, today, the challenge is how to manage and ensure quality of abundant and diverse information resources (Gros, 2002). Today, promising preliminary results become available to the general public well before the social science community can evaluate the evidence, and that window between availability and scientific consensus is expanding. In this article, we explore the extent to which government agencies communicate with the public about targeted nutrition strategies in this new environment. We also examine the conditions under which government employees discuss controversial nutritional therapies for children with disabilities or chronic illness.

Literature Review

Targeted nutrition
As has been the case for other basic human needs including education, housing and employment, individuals with disabilities or chronic illness have historically experienced difficulty getting appropriate food. This was the result of difficulties such as a lack of understanding of appropriate nutritional needs and eating strategies, poverty, and that appropriate food products were not mass produced by food companies (Cloud, 1997; Mitchell, 2003). As a result of these socially constructed barriers, individuals with disabilities or chronic illness were expected to have deteriorating health (Mitchell, 2003). For example, malnutrition and depressed growth were considered normal for children with developmentally delayed or physically disabled children until the late 1980's (Amundson, Sherbondy, Van Dyke, & Alexander, 1994).

As the accepted understanding of disability becomes more person-centered and rights-based, nutrition professionals have begun to emphasize health maintenance for individuals with disabilities or chronic illness. Children with disabilities or chronic illness tend to benefit most from targeted nutrition therapies, in part because their anticipated long-term health benefits are pronounced (ADA 2004; Cloud, 1997). The American Dietetic Association (ADA) recommends nutrition therapies incorporate interdisciplinary perspectives including those of physical therapists, occupational therapists, social employees, dentists, dietitians, nurses and physicians in order to fully address any issues or challenges that may face a child (Michalczyk, 2003; Wodarski, 1990; Smith 2003).

In order for the full benefits of such initiatives to be realized, the government's role is to cautiously evaluate and carefully disseminate state of the art information (Smith, 2003). In doing so it is important to strive to incorporate new information about therapies both with a discerning but open mind. Striking this balance is potentially difficult when acting prior to scientific consensus. Since the 1970's, targeted nutrition therapies designed for those with particular medical diagnoses have found their way into the mass media and scientific journals. There is now a great deal of publicly available information about nutrition and nutrition therapies. When the public has such access to information, many people develop the expectation that government programs will include nutrition related information.

Over time, however, many targeted nutrition therapies have not demonstrated scientifically confirmed long-term health benefits (ADA, 2004; Ellis, Singh, & Ruane, 1999). For example, the "U-series" treatment was developed in the mid-1970s for children with Down Syndrome and mental retardation but it ultimately failed to show significant results (Ellis, Singh, & Ruane 1999). Government agency representatives might hesitate to promote less proven therapies, especially because it may take a long period of time for the benefit (or harm) of a particular targeted nutrition therapy to be observed.

However, many nutrition therapies have proven legitimate or at least valued by stakeholders. Examples include the ketogenic diet for children with epilepsy (Cloud, 1997; Freeman, 1998, 1999) and elimination of casein and gluten from the diets of children with autism spectrum orders (Shattock, 2001). The popularity and promise of such targeted diets might be expected to inspire government agency representatives to suggest targeted nutrition therapies, at least for a trial period (as is currently done, for example, given a suspected food allergy). This may be especially the case when the change is nothing more than a difference from conventional eating habits.

Knowledge construction, nutrition, and disability
In recent years scientific information has become (and is expected to be) much more generally available (Gros, 2002, 325-326). However, the relative ease with which information can be communicated cannot be equated with access, understanding, or expertise (Gregory, 2003). As a result, civic education is a common policy solution used by government (Baker, 2004).

Government agencies become shapers of knowledge about specific human conditions when they take responsibility for informing the public generally and stakeholders specifically about disability or chronic illness. This construction of reality has been "conceived of as a series of socially mediated activities" (Gros, 2002, 329) by which government agencies engage with issue stakeholders and the general public. This mediation creates official knowledge that, consciously or not, privileges the role that certain types of information have in the creation and transmission of knowledge (Baumgartner & Jones, 1993).

Science is no more or less than the construction of truth over time (Forsyth, 1999). As knowledge is constructed there is at least some moment in time during which the science is unclear enough to make its interpretation and application controversial (Hajer, 2003). Government agencies tend to be inclined toward some period of waiting before less proven innovations are embraced (Lemieux-Charles, L., McGuire, W. & Blidner, I., 2002). Especially in the information age, however, members of the public often become aware of either scientific controversy or hesitancy on the part of agencies to act (or both).

The public is an increasingly self-aware actor in the process of dissemination of scientific information (Gregory, 2003). As a result, "the role of knowledge changes as the relationship between science and society has changed: scientific expertise is now negotiated rather than simply accepted" (Hajer, 2003). This, in turn, complicates the management of scientific evidence in the government agencies by elevating the role (and deepening the responsibility) of the public in the creation of official scientific knowledge (Gregory, 2003).

Method

Study participants— definition and selection
The study's universe consists of representatives of state agencies in the US whose mission specifies serving children with disabilities or chronic illness. Agency types varied substantially, including state departments of health, departments of education, regional centers, departments of behavioral and developmental services, and the First Steps program, among others.

Due to budget constraints, we relied entirely on websites of the relevant state agencies to identify potential respondents with an email address provided on the site. Email invitations to participate were sent to 1,159 persons between January and June, 2004, with one follow-up request for response if none was received after 6 weeks.

Survey instrument
A brief (17 question), mostly closed-ended, questionnaire was designed by the authors to cover topics of: policies and activities of the agency and its representatives in the field regarding communication to children's parents/guardians, respondents' opinions and knowledge about nutrition therapies, and respondents' background in regard to professional experience and training, and political leaning. (The full instrument is available on request to the senior author.)

Response rate and respondent characteristics
Two percent sent notes as refusals, but the vast majority did not respond to the first or follow-up requests. Thus, the response rate was only 14.5 percent, a severe limitation for generalization of findings. However, the N of 139 completed responses was useful for this pilot examination of the issues.

Respondents had worked at their agencies for durations between 6 months and 32 years. Of those who reported the state that they worked in 21% were from Eastern states, 29% were from Midwestern states, 25% were from Southern states and 26% were from Western states (the Council of State Governments state classifications were used). Those taking the survey were predominantly female—of those who reported gender, 88% were women. The professional training of the respondents was quite diverse, however, 23% indicated that they had professional training in nutrition, 16% indicated they had medical or nursing training, 14% indicated that they had training in public health or public affairs and 29% indicated they had training in social work.

Findings

We considered four aspects of strategies for managing scientific uncertainty when state agencies present information about targeted nutrition therapies: agency policies and practices; information portrayal; communication strategies; and stakeholder preferences. These aspects are useful in the consideration of approaches to the management of controversial information because they create an attitude toward unproven, but promising scientific results (Hajer, 2003; Page, 2003).

Agency policies and practices
Although both agency practice and the creation of knowledge are, at best, incompletely represented by official agency policies, the presence of formal policies shapes, buttresses, and limits official knowledge. For example, when asked what could prevent them from discussing information regarding targeted nutrition therapies with parents or guardians, one respondent simply reported, "we are a government agency." Since the government agency for which the respondent worked was one focused on the special needs of children with disabilities or chronic illness, this suggests a reluctance to include nutrition related information in communication with parents about the special needs of the children.

According to the respondents, official knowledge about nutrition and mechanisms for the transmission of knowledge developed largely in the absence or perceived absence of official agency policy. Twenty-two percent of respondents reported that their agencies had policies regarding the communication of information about targeted nutrition therapies. However, 41% of the respondents indicated that their agencies recommended targeted nutrition therapy.

The presence of policies and recommendation practices varied somewhat by region. Twenty-four percent of respondents from the East reported their agency had policies about nutrition therapy, which is close to the 22% who reported that their agencies recommended such therapies. The difference in these percentages was more pronounced in other parts of the country. Whereas 48% of the respondents from the West reported that their agency recommended targeted nutrition therapy, only 30% reported that their agencies had policies regarding nutrition therapy. Similarly, 48% of respondents from the South reported that their agencies recommended targeted therapies 23% reported being aware of policies. Finally, in the Midwest, 37% recommended therapies and 18% reported policies.

Respondents who reported they worked for agencies that recommended targeted therapy were more likely to report their agencies had policies concerning nutrition therapies. For those respondents who indicated their agencies recommend nutrition therapy, 32% indicated that their agencies had policies regarding the communication of information about targeted nutrition therapies. On the other hand, only 17% of those respondents who indicated that their agencies did not recommend targeted nutrition therapies said that their agencies had policies regarding the communication of this information. This would suggest that more policies exist to promote the communication of information (whereas some do limit it). Perhaps more importantly, however, it highlights the fact that more than two-thirds of the respondent's agencies had no policy on the content of communication (at least no policy employees know of) even though they recommend nutrition therapy.

Agency employees who reported that they were aware of official policy were asked to provide brief descriptions of their agency policies. Many of the policies described mentioned the scientific or research dissensus as a constraining factor. For example, one employee reported "our policies state that the efficacy of proven therapies must be factored in when we fund such therapies...if there is no research to back up a therapy we will not fund it. We will discuss other therapies when families inquire about them, but we will not fund them." Another respondent described the relationship between evidence and agency policy by stating, agency policies "attempt to follow evidence based guidelines such as the Nutrition Practice Guidelines for Diabetes."

Respondents were also careful to note that their agencies' policies tended to reflect the expectation that medical professionals would transmit knowledge about nutrition therapies. For example, one respondent stated, "we do not recommend any treatment programs. We are able to provide families with information about programs, particularly through national support networks, and encourage them to discuss with their child's pediatrician or specialist." Another described more simply by saying "we do not recommend any specific diets, we defer to specialists, nutritionists, physicians."

Furthermore, when asked what could prevent them from discussing information regarding targeted nutrition therapies with parents or guardians, agency policies and limitations were specifically cited. For example, one respondent reported that her agency was unable to hire adequate nutrition staff due to funding constraints. Others were careful to state how deliberately their agencies handle nutrition information. For example, one respondent wrote, "we are willing to share information with parents; at no time do we recommend traditional or non-traditional therapies." Another stated "we would discuss these therapies if the subject was raised by the parents." Finally, others explicitly gauged their conversation about nutrition therapies based on the level of knowledge of the parent—they reported discussing controversial nutrition therapies only with parents already knowledgeable about the therapies and who started the discussion about them.

Information portrayal
As is discussed above, government employees might be expected to moderate the construction of knowledge in the presence of suggestive preliminary findings but in the absence of scientific certainty. The survey asked how likely the participant's agency was to discuss controversial or nontraditional nutritional options with parents or guardians of children with disabilities or chronic illness. Sixty-three percent of respondents reported that their agencies were either very unlikely or somewhat unlikely to do so whereas only 21% reported that their agency would be likely or very likely to discuss this type of information. These percentages did not change significantly when cross-tabulated with responses to the question of whether or not the respondent's agency had policies regarding the communication of information about targeted nutrition therapies.

As is mentioned above, the construction of official knowledge about nutrition includes the interpretation of shifting scientific evidence. This is a challenge for even the most scientifically conscious government employee and can result in a hesitancy to portray or communicate information about nutrition. When asked what could prevent them from discussing information regarding targeted nutrition therapies with parents or guardians, several respondents cited scientific uncertainty. For example, one respondent explained that the constraining factors were "my lack of knowledge and the lack of evidence to support the information on nutritional therapy." Similarly, another respondent cited that she was "unsure of evidence--lack of availability of nutritionist outside of inpatient setting" as the reason for refraining from conversations about nutrition therapies. Respondents were also concerned that they had not received enough information about nutrition therapies. As one said, "I am a social employee. I work with many speech therapists and I have learned a lot about nutrition, but there is a lot I don't know. I would like to know more about specific nutrition therapies."

There was also the concern that constructing controversial nutrition information into official knowledge would mislead parents. Many of those who completed the survey appeared to have a deep sense of responsibility for the way in which official knowledge could define the beliefs of parents or guardians of children with disabilities or chronic illness. This conception rests on a belief in the power of agency behavior in traditional bureaucratic settings—that is, that the disposition of the agency toward types of information is a powerful factor in the shaping of the experiences and beliefs of issue stakeholders. Parents and guardians were sometimes expected to rely upon their own ability to sort through controversial information rather than to receive help in this from government employees. For example, one respondent explained, "I would not want to give false hope. I would rather parents discussed this issue with other parents and doctors." This strategic avoidance was one common response to the challenge of including scientifically uncertain information in the official knowledge of agencies that work with children with disabilities and chronic illness.

Communication strategies
Government agencies are expected to communicate information to the general public and issue stakeholders. The survey asked about strategies used to communicate with parents or guardians of children with disabilities or chronic illness. The differences between the percent using specific communication strategies for general and nutrition related communication varied, but the nutrition percentage was always less than the strategies used for general communication. The most often used form of communication is personal communication, with 79% of respondents using that method for general communication and 68% using it for nutritional information. Many agencies use educational pamphlets, parent trainings, direct mailings, and websites to communicate information (61%, 49%, 41%, and 41% respectively). However, the use of those methods is reported less often for the specific communication of nutritional information (38%, 26%, 16%, and 16% respectively).

The relationship between agency policies regarding the communication of information about targeted therapies and types of communication strategies used appears more complex. On the whole, those respondents working in agencies without policies reported less usage of each of the communication strategies. However, the gap between the agencies with and without policies was not constant across communication strategy types. Perhaps most interestingly, there was only a small gap in the use of electronic communication strategies, with approximately 10 percent of each type of respondent reporting having used e-mail and 15% reporting having used websites to communicate with parents or guardians of children with disabilities or chronic illness. Direct mailings, books or custom pamphlets and personal communication all had a gap of at least 10 percent, however, with those respondents working in agencies with nutrition communication policies reporting higher use of these strategies.

Stakeholder preferencing
Respondents were also asked how important it was to discuss targeted nutrition therapies with parents or guardians of children with specific conditions including physical disability, learning disabilities, emotional disabilities, behavioral disorders, neurological differences, and chronic illness. Respondents rated the importance of communicating in each circumstance on a seven-point scale (very important, important, somewhat important, don't know, somewhat unimportant, unimportant and very unimportant). Very few respondents indicated that it was either unimportant or very unimportant to discuss targeted nutrition therapies with the parents or guardians of children with any of these types of disabilities. At least forty-five percent of respondents reported it important or very important to discuss targeted nutrition therapy with parents or guardians with children with each of the disability categories.

However, the respondents thought that there were types of disability or chronic illness where it was more important to discuss nutritional therapies. Over 60% of respondents rated physical (71%), neurological (64%) and chronic illness (78%) as such, whereas less than half considered it as important to discuss nutrition information with the parents or guardians of children with learning (45%) or emotional problems (45%).

When cross-tabulated with whether or not the respondent's agency recommended targeted nutrition therapy, respondents from agencies that did not recommend nutrition therapy on the whole consistently rated the importance of discussing this information with families lower. They did not, however, rate the transmission of this information as unimportant any more frequently than their counterparts from agencies that recommended targeted nutrition therapy. Those who worked at non-recommending agencies were at least twice as likely to report simply that they did not know whether or not it was important to discuss nutrition with the parents or guardians of children with particular types of disabilities.

This discrepancy varied significantly by type of disability. For example, whereas nearly 100% of respondents from agencies that recommended targeted nutrition therapy rated the discussion of nutrition information with the parents or guardians of children with physical disabilities or chronic illness, approximately 30% of respondents working at non-recommending agencies reported that they did not know whether it was important to discuss nutrition therapies with parents with children with these types of disabilities or not. Similarly, respondents from non-recommending agencies reported five times as frequently that they did not know whether it was important to discuss nutrition related information with parents or guardians of children with neurological disabilities.

Conclusion

The results of this study help to demonstrate how the deliberate construction of information affects government responsibility and reflects government power. This is especially important when the government and its employees are required to make choices on the basis of incomplete and controversial information.

Restrictive roles and agency behavior
One of the first aspects of government behavior demonstrated was that the state agency context often still restricts behavior to more formal bureaucratic roles. Despite the philosophical trend toward a more deliberative and integrated governance, 28 people contacted the authors to explain (often in impressive detail and with significant insight into the issues surrounding nutrition therapy) that they would not be taking the survey. Some of the messages stated the transmission of nutrition therapy was not their job or, more often, the role of their agency, even when the agencies were dealing with otherwise very comprehensive needs of children with disabilities or chronic illness and their families. Others reported (or had their supervisor report) that they were not allowed to complete the survey, for reasons including that they were not professional nutritionists or were unable to judge specialized evidence about nutrition.

There is, of course, a place for both professional specialization and caution. However, if information about nutrition is considered an important element working with children with disabilities or chronic illness, some aspects of at least transmitting or redirecting the information becomes a uniform responsibility. Failure to address fundamental aspects of the lives of the children with disabilities and their families in the disability-oriented civic education of these stakeholders (and general public) builds barriers into the public infrastructure that limits communication about nutrition therapies.

The problems associated with a narrow definition of agency role behavior is similar to that found in institutional rational choice theory where the behavior that best protects agency self interest is that of a cautious expert, removed from public conversation and scientific debate. There are other philosophical approaches to the communication between the public and public agencies that could be drawn upon to guide communication strategies (Barker & Camarata, 1998, 3).

Constructed knowledge, privileged information
Whereas expertise was once concentrated and specialized information was delivered in one direction from expert to stakeholder, today there is more diffusion of knowledge and a wider public conversation of science based nutritional information. In examining the construction of knowledge about nutrition therapies in state agencies, much of the official, explicit, knowledge is being constructed in the absence of a guiding agency policy about these therapies of which agency representatives are aware. Furthermore, where a policy was present, it was usually described as vague except when it specifically restricted the discussion of nutrition related information. As a result, the line between tacit and explicit knowledge is blurred as government employees substitute their own judgments or impressions for official policy. Since this diffuses the agency's voice, it can hinder progress toward best practices in the exercise of creation of consensus about how to handle controversial scientific information and the communication of that consensus to those who could be served by the information.

Part of this blurring includes the expectation that medical professionals would reliably transmit information about nutrition. Respondents often reported that the topic would go undiscussed unless the parent or guardian specifically brought it up to a state agency employee. Furthermore, there were differences in the use of communication strategies to convey information about nutrition versus general communication between the agency and the parent or guardian of the child with a disability or chronic illness. Differential behavior for different types of disabilities or level of scientific certainty is likely to be both necessary and desirable. However, in order for these differences to have a desirable effect, this differencing should be done consciously, collectively, and as publicly as possible. As the case of targeted nutrition therapy suggests, these criteria are likely not fully addressed in current approaches to the public management of disability related policies.

Hierarchies and histories
The construction of controversial information into official knowledge is unavoidably challenging. Respondents often expressed concerns connected to the power of official knowledge. Parents or guardians with children with disabilities or chronic illness were expected to somewhat unquestioningly place a high level of trust in the information communicated by state agencies. The state agencies' typical response to controversial information results situations where some stakeholders receive the information but others do not. Those parents who brought the topic up themselves would receive the information first. This is a limited version of communication that may result in unnecessary differentiation between parents. The tendency to "cream" has long challenged effective implementation of disability related policy. For example, agencies providing rehabilitation services have been observed providing more enthusiastic service to those individuals with disabilities and differences considered easiest to pass toward social norms (Krieger, 2003). Inclusive discourse between all parents and primary caregivers and government is the only way to prevent creaming in services for children with disabilities or chronic illness.

In addition to the stakeholder hierarchy, there was an observed difference in the tendency to communicate targeted nutrition information to the parents or guardians of children with certain kinds of conditions first. Of course, a large part of this hierarchy was based on the (perceived) reliability of scientific evidence. Those diets with more persuasively proven histories are more quickly incorporated into official knowledge. As a result, respondents more often considered it important to convey targeted nutrition therapy information related to physical, neurological, or chronic illness. This case suggests that government employees are routinely put in the position of judging reliability of scientific evidence. As such, they will need to be increasingly prepared to take on this role as the information age unfolds. Socio-scientific consensus is hard won, but won best when all participants in the public discourse are fully prepared to do their part.

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Copyright (c) 2005 Dana Lee Baker, Angela Marie Meers



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