Donald J. Lollar

Obesity and disability: Time to act

Today, 34% of Americans have a BMI above 30.1–3 The dramatic rise in obesity has generated considerable concern due to the increased risk that excess weight poses for chronic diseases. The economic burden is substantial, with medical spending estimated to be 42% higher for someone who is obese and obesity-related healthcare costs estimated at

Communication, disability, and the ICF-CY

147 billion annually.4 Although smoking is the leading preventable cause of U.S. mortality,5, 6 obesity causes greater morbidity5 and some speculate that deaths due to poor diet and inactivity may exceed those from smoking.6, 7 Increased weight may be more problematic for people living with impairments than for the nondisabled population. However, little attention has been devoted to this group despite evidence that people with disabilities are more likely to be obese than the general population.8–10 This is troubling considering that people with disabilities are at risk for the same weight-related chronic conditions experienced by the general population, while also being at increased risk for chronic medical conditions associated with disability.11–13 The combination of disability and weight gain can create a vicious cycle, posing additional health burdens and further restricting functioning and independence. Further, people living with disabilities may be at greater risk than their peers without disabilities for weight gain due to low levels of activity.14, 15 Physical activity barriers include those facing the general population (e.g., time, motivation), in addition to physical limitations of the impairment, reduced opportunities for physical activity and sports participation, inaccessible environments,16 and fewer health-promotion programs which target appropriate exercise options.8, 17–19 Nearly 20% of the population, or about 54 million people experience some type of disabling condition.20 Despite the nation’s focus for more than a decade on eliminating health disparities among specific racial and ethnic minority groups,21–24 people with disabilities represent a consistently underserved group with substantial health disparities.25 This paper argues that people with disabilities should be an emerging population of concern within public health efforts related to obesity. The three core public health functions of assessment, policy development, and assurance26 are used as a framework to address this serious public health threat for this group.

Developing the ICF-CY for AAC Profile and Code Set for Children Who Rely on AAC

The child’s interactions with persons in the proximal environment constitute the context for development of communication. Within early close relationships, the child acquires communication skills; developmental outcomes are defined by the continuous dynamic interactions of the child, the experiences provided by the family and close environment, and the use of different means of augmentative and alternative communication (AAC). Communication problems manifest in a variety of ways and at different levels of severity. The nature of problems differs as a function of the child’s age and diagnosed condition, the communication skills of interaction partners, and the availability of communication aids. The focus for assessment and intervention may be the child, the family, the close environment and/or the interactions between them. Clarifying these varied functions and environmental factors is crucial for appropriate assessment and provision of augmentative and alternative communication (AAC) interventions. This paper reviews issues in assessment and intervention for children in need of AAC and presents the World Health Organizations’ (WHO) International Classification of Functioning, Disability and Health version for Children and Youth (ICF-CY) as a tool to enhance assessment and intervention in the AAC field.

Health care needs of children with down syndrome and impact of health system performance on children and their families

We describe the ICF-CY for AAC Profile, a tool to integrate information about the multiple factors affecting communication skill development and use in school-aged children with complex communication needs. The Profile uses the World Health Organization’s International Classification of Functioning, Disability and Health − Children & Youth Version () as its framework. We propose that the ICF-CY for AAC Profile constitutes a code set for AAC users and discuss the iterative process of code-set development. The Profile is one component of a proposed process to guide the development of educational goals for children in Grades kindergarten-12 who currently or potentially rely on AAC.

Participation of children with disabilities in Taiwan: The gap between independence and frequency

Objective: The functional, financial, and social impact on families of children with Down syndrome (DS) in the United States and the role of the US health care system in ameliorating these impacts have not been well characterized. We sought to describe the demographic characteristics and functional difficulties of these children and to determine whether children with DS, compared with children with “intellectual disability” (ID) generally, and compared with other “children and youth with special health care needs” (CYSHCN), are more or less likely to receive health care that meets quality standards related to care coordination and to have their health care service needs met. Methods: This study analyzed data from the 2005–2006 National Survey of Children with Special Health Care Needs (n = 40,723). Children and youth aged 0 to 17 years with special health care need (CYSHCN) who experience DS (n = 395) and/or IDs (n = 4252) were compared with each other and other CYSHCN on a range of functioning, family impact, and health care quality variables using bivariate and multivariate methods. Data were weighted to represent all CYSHCN in the United States. Results: Compared with CYSHCN without DS, children with DS were significantly less likely to receive comprehensive care within a medical home (29.7% vs 47.3%; p < .001). Parents of children with DS were also significantly more likely to cut back or stop work due to their childs health needs (23.5% vs 55.1%; p < .001). Although overall system performance was poorer for children with DS compared with those with ID and no DS after adjustment for family income, prevalence on most aspects of quality of care and family impacts evaluated were similar for these 2 groups. Conclusions: In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.

The variability of vision loss assessment in federally sponsored surveys: Seeking conceptual clarity and comparability

Background Independence and frequency are two distinct dimensions of participation in daily life. The gap between independence and frequency may reflect the role of the environment on participation, but this distinction has not been fully explored. Methods A total of 18,119 parents or primary caregivers of children with disabilities aged 6.0-17.9 years were interviewed in a cross-sectional nationwide survey with the Functioning Scale of the Disability Evaluation System - Child version (FUNDES-Child). A section consisting of 20 items measured the children’s daily participation in 4 environmental settings: home, neighborhood/community, school, and home/community. Higher independence and frequency restriction scores indicated greater limitation of participation in daily activities. Scores for independence, frequency and independence-frequency gaps were examined across ages along with trend analysis. ANOVA was used to compare the gaps across settings and diagnoses for children with mild levels of severity of impairment. Findings A negative independence-frequency gap (restriction of frequency was greater than that of independence) was found for children with mild to severe levels of impairment. A positive gap (restriction of independence was greater than that of frequency) was found for children with profound levels of severity. The gaps became wider with age in most settings of children with mild impairment and different diagnoses. Widest negative gaps were found for the neighborhood/community settings than for the other three settings for children with mild to severe impairment. Conclusions Children’s participation and independence-frequency gaps depend not only on the severity of their impairments or diagnoses, but also on their age, the setting and the support provided by their environment. In Taiwan, more frequency restrictions than ability restrictions were found for children with mild to moderate severity, especially in the neighborhood/community setting, and increased with age. Further identification of environmental opportunities that positively impact frequency of participation is needed.

The Communication Supports Inventory-Children & Youth (CSI-CY), a new instrument based on the ICF-CY

PURPOSE To review U.S. national population-based surveys to evaluate comparability and conceptual clarity of vision measures. DESIGN Perspective. METHODS The vision questions in 12 surveys were mapped to the World Health Organizations International Classification of Functioning, Disability and Health framework under the domains of condition, impairment, activity limitation, participation, and environment. Surveys examined include the National Health Interview Survey, the Behavioral Risk Factor Surveillance Survey, National Health and Nutrition Examination Survey, the Census, and the Visual Function Questionnaire. RESULTS Nearly 100 vision measures were identified in 12 surveys. These surveys provided no consistent measure of vision or vision impairment. Survey questions asked about differing characteristics of vision-related disease, function, and social roles. A question related to ability to read newspaper print was the most commonly asked question in surveys. CONCLUSIONS Limited comparability of data and lack of conceptual clarity in the population-based surveys resulted in an inability to consistently characterize the population of people experiencing vision impairment. Consequently, vision surveillance was limited.

Environmental Health and Disability

Abstract Purpose: Two studies are presented that evaluated the Communication Supports Inventory-Children & Youth (CSI-CY), an instrument designed to facilitate the development of communication-related educational goals for students with complex communication needs (CCN). The CSI-CY incorporates a code set based on the ICF-CY. The studies were designed to determine the effect of using the CSI-CY on IEP goals for students with CCN and to evaluate consumer satisfaction. Method: In Study 1, sixty-one educators and speech–language pathologists were randomly assigned to either (a) provide a student’s current IEP (control group) or (b) complete the CSI-CY prior to preparing a student’s next IEP and to submit the new IEP (experimental group). Study 2 was a field test to generate consumer satisfaction data. Results: Study 1 showed that IEP goals submitted by participants in the experimental group referenced CSI-CY-related content significantly more frequently than did those submitted by control participants. Study 2 revealed high satisfaction with the instrument. Conclusions: The code set basis of the CSI-CY extends the common language of the ICF-CY to practical educational use for children with CCN across diagnostic groups. The CSI-CY is well regarded as an instrument to inform the content of communication goals related to CCN. Implications for Rehabilitation The CSI-CY will guide rehabilitation professionals to develop goals for children with complex communication impairments. The CSI-CY is a new instrument that is based on the ICF-CY for documentation of communication goals.

Health Is More than Medicine

“The environment is everything around us—the air we breathe, the water we drink and use, and the food we consume. It’s also the chemicals, radiation, microbes, and physical forces with which we come into contact,” says the Overview of the National Center for Environmental Health (NCEH) at the U.S. Centers for Disease Control and Prevention (CDC, 2009a, b). The World Health Organization explains that “in its broadest sense, environmental health comprises those aspects of human health, disease, and injury that are determined or influenced by factors in the environment.” The field includes studying both direct pathological effects of numerous agents whether biological, chemical, or physical, but also the impact on health of the physical and social environment, such as land use, industry, housing, transportation, housing, and agriculture (WHO, 1997). The Environmental Health chapter of Healthy People 2010, the public health agenda for the United States from 2000 to 2010, extends this emphasis with the notion that decisions about the environment also affect quality of life and health. Decisions about how and where communities choose to grow, for example, impacts the amount of time people spend to go to work. Also, the decisions about where communities plan and place different components, such as housing, schools, shopping, and parks, affect access of these components by citizens living in the community (DHHS, 2001a; Jackson, 2003). Public health, therefore, has defined environment broadly, highlighting the varied ways in which health is affected.

Mental Health Caregiving: A Call to Professional Providers, Family Caregivers, and Individuals with Mental Health Challenges

The World Health Organization definition of “health” has become all but a cliche. It is often used to highlight the need to address issues beyond the traditional medical model, often associated with deficits, disease, or disability. Most often the definition is all that is provided. The specifics of how a medical practitioner or a medical organization moves beyond medicine toward a focus on health are usually sketchy, at best. While health is certainly the outcome that medicine addresses, the emphasis is most often the reduction or elimination of deficits or deficiencies. This chapter will address the varied secondary conditions to which individuals with developmental disabilities are most vulnerable, and will identify the attitudes, approaches, and practices (the barriers) that undermine the health of individuals with developmental disabilities. We will balance this by identifying concepts, approaches, and practices that can encourage health. Health promotion is the process of enabling people to increase control over, and to improve, their health. This goal of helping individuals increase control over their health, with the requisite understanding and behaviors to improve their health is a critical one for individuals with developmental disabilities. Myers concluded that if individuals with developmental disabilities are to move toward health, there is a need for “greater professional humility to appreciate that people with both physical and intellectual impairments are able to experience and articulate their own satisfaction, pleasure, and joy”. Medicine is a crucial component of health, but health is more than medicine.