Abstract

Issues of health education programming for people with intellectual disability are discussed. As environments in which such individuals live become more inclusive, and they are encouraged to make their own choices, the issue of whether current health education is sufficient to enable them to make healthy life choices is considered. More attention should be focused on programs in schools and the community to fulfill this need. Three aspects of health education programming are considered: physical activity, general health knowledge, and social supports for health. Continuity of information is viewed as important in policy development as well as in interprofessional coordination and cooperation to assure that these individuals are not further handicapped by poor health.

In many countries, individuals with intellectual disability (the term used by the International Association for the Scientific Study of Intellectual Disability (IASSID) in place of mental retardation) have been reported to experience more health problems throughout their lives than do people in the general population (Agran, Marchand-Martella, & Martella, 1994; Ashman, Suttie, & Bramley, 1993; Chicoine, McGuire, Hebin, & Gilly, 1994; Hand & Reid, 1996; Kapell et al., 1998; Van Dyke, Mattheis, Eberly, & Williams, 1995), and there appears to be a level of indifference towards their higher than average mortality rates (Beange, McElduff, & Baker, 1995). Poor health habits as well as access to services and high levels of medication for behavioral problems are considered to increase their vulnerability for the development of additional health problems (Beange et al., 1995; Hand, 1994).

In quality-of-life models, Brown (1997) and Felce and Perry (1997) included an aspect of “quality” that they labeled a “physical aspect of well-being.” This physical aspect incorporates an individual's health, fitness, mobility, and safety, although Felce and Perry stated that health has been given relatively scant attention. Feelings of well-being that are associated with physical health and the maintenance of good health are essential if one is to attain and maintain a better quality lifestyle. I suggest here that all other programs and services designed to facilitate and support the achievement of a quality lifestyle for individuals with intellectual disability could falter without proper attention to this essential aspect. Consequently, individuals with intellectual disability could be further handicapped due to poor health.

Health Issues and Intellectual Disability

The identification of health issues and the provision of adequate and appropriate care for this population have been the subject of research in recent years. In a New Zealand national research project, Hand and Reid (1996) investigated a population of 1,063 people with lifelong intellectual disability who were 50 to 88 years of age. The authors found that more than half of this older population had major physical problems; 17% had epilepsy; 21%, musculoskeletal impairments; and 14%, cardiovascular disease. Visual problems were evident in 32%, weight problems in 40%, and 75% received regular medication (Hand, 1994). Although many of these problems, such as vision and hearing impairments and musculoskeletal problems, were treatable, there was a lack of specialist care, medication reviews were inadequate, and there was a risk of premature onset of cardiovascular disease due to weight problems.

In an Australian study Ashman and colleagues (1993) used questionnaire and interview information from two cohorts of participants with lifelong intellectual disabilities who were 55 years and older. One cohort was composed of all residents of two states (n = 446), and the other was a national random sample (n = 110). The authors found that older Australians with an intellectual disability had an unacceptable level of circulatory disorders (37%), muscle and joint problems (18%), and diabetes (6%). In New York State, after interviewing carers and viewing medical records of 278 adults with mental retardation (mean age 54 years), Kapell et al. (1998) reported a similar range of health problems. Thyroid conditions, heart disorders (nonischemic), and visual impairment were more prevalent than in the general population; but diabetes, hypertension, ischemic heart disease, and stroke were the same. These researchers noted the chronic nature of the medical conditions but also suggested that the prevalence may be underestimated where investigators relied on reports rather than on an examination of the participants.

Beange et al. (1995) conducted physical examinations of their participants. These were a random sample of 202 adults with intellectual disabilities ages 20 to 50 years in New South Wales, Australia. The authors reported that, compared to the local population, there was a significantly increased risk of chronic diseases, especially where risk factors were related to cardiovascular disease. There was an average of 5.4 medical disorders per person. In another study with an age-matched sample (mean age of 35 years), Center, Beange, and McElduff (1998) reported that there was an increased prevalence of osteoporosis in those with mild to moderate mental retardation (n = 94) who lived in the community. These researchers identified a number of the risk factors associated with osteoporosis, such as physical inactivity and hypogonadism, which were common in the group, and concluded that this group would have an increased risk of fractures as they aged.

Clearly, it would seem that there is considerable evidence of a range of chronic medical and at-risk conditions in adults with life-long intellectual disability, and some conditions are more prevalent among this group than in the general population. Some of these, it has been suggested, can be attributed to lifestyle factors, such as overweight and lack of physical activity (Bell & Bhate, 1992; Center et al., 1998; Prasher, 1995; Rimmer, Braddock, & Fujiura, 1993). Individuals with Down syndrome may be more at risk, as many individuals with this disorder become overweight at an early age (Chumlea & Cronk, 1982), and they are often sedentary. Impulsive eating behavior, which can be life-threatening, and low energy expenditure are factors for individuals with Prader-Willi syndrome. However, to date health care and education policies have not addressed the specific needs of individuals with intellectual disabilities (Hand & Reid, 1998; Seidl, 1998) nor has there been recognition of the fact that if these health problems exist in the adult population with intellectual disability, health education in schools and in the community for younger individuals is essential.

Chicoine et al. (1994) argued that many of the problems identified could be ameliorated with attention to good hygiene and hygiene education as well as promoting behaviors, such as exercise. Ashman et al. (1993) and Kapell et al. (1998) advocated better access to health services and discussed the necessity to continually monitor the health status of individuals with intellectual disability as they grow older. When made available to those with an intellectual disability, health screening programs as part of the primary health services could also be an intervention tool to facilitate health gains (Wells, Turner, Martin, & Roy, 1997). Managed health care that is focused on prevention and primary care, with support from those interested in developmental disability, could provide the quality and the competence required in these managed health care settings (Walsh & Kastner, 1999).

Recently, medical knowledge about a range of health issues associated with intellectual disability has increased (Cloud, 1997; Lennox & Diggens, 1999; Pueschel & Pueschel, 1992,), and medical interest groups have been developed for practitioners. Medical checklists that relate to the health issues and treatments associated with intellectual disability have begun to be more widely circulated (Cohen, 1996; Lennox & Diggens, 1999).

Within medical and other health professional training programs, there is a growing trend for the medical and health problems associated with intellectual disability to be taught. In Australia, for example, a number of Developmental Disability Units have been established in major teaching hospitals. Awareness of these issues has been raised through the publication of “best practices” articles (see, e.g., Lennox & Tremble, 1998), which are readily available to doctors. As the living environments of people with intellectual disability change, this increased availability of information and training is essential for health providers who have had little or no previous contact with these patients, but who are now consulted on a more regular basis. In an attempt to improve equity in the demand for health care, Beange, Lennox, and Parmenter (1999) proposed 15 health targets. These have been endorsed by the IASSID and were recommended to the World Health Organization (WHO) in 2000.

In promoting healthy behaviors, an expanding role for other professionals has also been advocated, for example, by Cloud (1997) for dietitians and by Hanley and Parkinson (1994) and Zacijek-Farber (1998) for social workers. In a position paper on social work values and practice, Hanley and Parkinson stated that social workers “played important roles in the efforts to provide an optimal quality of life for individuals with developmental disabilities” (p. 430). Access to health services as well as health education programs were considered a part of their roles. The importance of providing nutrition services for people with developmental disability has been recognized by the American Dietetic Association in two position papers, and these have established the need for better services (Cloud, 1997). Cloud articulated the key roles that can be played by dietitians in managing the dietary requirements of individuals with Down syndrome and Prader-Willi syndrome. For those on medication, such as anticonvulsive drugs, dietitians can provide nutrition therapy and can be part of a nutritional support team for individuals with more severe feeding problems. Zacijek-Farber considered that because social workers have a responsibility for enhancing quality of life, and healthy behaviors can add to the individual's quality of life, health-promoting and preventive activities “readily fit into social work practice” (p. 9).

Although a range of living arrangements still exist (e.g., for the United States, see Rotholz & Massey, 1996, and for Australia see Ashman, Suttie, Bramley, & Suttie, 1994), the adoption of the principles of normalization and social role valorization have increasingly seen people with intellectual disability becoming part of community life. In these least restrictive environments, there are more opportunities for choice and an increased degree of independence and freedom. Today, many young adults with intellectual disability are likely to choose to live independently in the community with or without support. Most of these young people will outlive their parents and some of their siblings, as the median life expectancy of those with mental retardation has risen to 66.2 years (Braddock, 1999). Independence may not necessarily lead to better health outcomes; indeed, Daly (1997) went so far as to contend that health problems, such as obesity, could be a negative aspect of deinstitutionalization and this independence. Some writers go further and suggest that for some individuals, recommended treatments can conflict with the personal rights and placement philosophies of least restrictive environments (Dykens et al., 1997). In support of this supposition, Strauss and Eyman (1996) found that those living in the community have mortality risks that are 70% higher than those in institutions. As noted by Beange et al. (1999), “De-institutionalization is no panacea” (p. 284).

The behavior necessary for maintaining health requires regular medical checkups (Beange et al., 1999) and the organization of managed health care initiatives (Criscione, Kastner, O'Brien, & Nathanson, 1994; Kastner, Walsh, & Criscione, 1997), which include knowledge about the planning of nutritional meals, community safety, home hygiene, and engagement in specific illness prevention behaviors, such as taking various medications or avoiding certain substances (Webb, 1996). For example, diabetes, respiratory problems (such as asthma), obesity, arthritis, and epilepsy are among the most prevalent medical conditions in this population (Ashman et al., 1993; Beange et al., 1995), and these conditions require health-maintaining strategies. Beange et al. also found a significant correlation between the receipt of medication and reported behavior problems, with 58% of their sample receiving daily medication. As large proportions of persons with moderate to severe mental retardation may be required to take regular medication (Ault, Guy, Rues, Noto, & Guess, 1994) and may be living independently in the community, the ability to monitor one's medication has been identified as an important skill (Agran et al., 1994). Because investigators have also noted that side effects from some medications can interfere with learning (Ault et al., 1994), prescribing should be well-supervised and reviewed.

Increased exposure in the community to a range of other substances (e.g., alcohol and tobacco) also seems to be likely (Degenhardt, 2000), and there would appear to have been no appreciable increase in the consideration of substance use and abuse as an aspect of personal health education for these individuals. When conducting a “needs” assessment of smoking and developmental disability in Calgary, investigators from the Vocational and Rehabilitation Research Institute (1996) stated that health educators were clearly not interested in smokers with developmental disabilities. There was limited research into their problems, and written materials as well as TV health messages were mostly too sophisticated for this population to understand. Edgerton, Gaston, Kelly, and Ward (1994) reported that many individuals in their sample of adults with mental retardation were heavy smokers, although Beange et al. (1995) reported a lower level of smoking in their population. Nevertheless, Edgerton et al. reported that their participants demonstrated a range of poor health maintenance practices, with “little understanding of the relations among smoking, exercise, diet and health” (p. 147). Official policies can contribute to this situation. Minihan (1999) found that in state-managed accommodation services, smoking policies and practices did not provide adequate information or protection (e.g., smoke-free areas) for either smokers or nonsmokers. In situations such as the one investigated by Minihan, where employees were heavy smokers and the residents were encouraged to exercise personal choice, smoking has the potential to be a significant health problem. In Australia, too, I have observed that many staff members working in group homes smoke within the vicinity of the residents.

In a study of persons with learning disabilities, knowledge about the effects of alcohol consumption was low, and this group was seen to be as vulnerable as other groups to the social pressures of alcohol use (Degenhardt, 2000; McCusker, Clare, Cullen, & Reep, 1993). In group homes and various social situations, greater choice and independence has meant there was a tendency to drink more alcohol and the new level of independence often resulted in problem drinking not being recognized (Degenhardt, 2000). Campbell, Essex, and Held (1994) considered that in an attempt to become more socially accepted, the “bar scene” could be especially hazardous for those with low intelligence. In the community today and on television and radio, there are many conflicting health messages that are supported and promoted by powerful advertising and visual images. With a range of impairments that may limit the ability to discriminate and problem solve, people with intellectual disabilities would have trouble interpreting the health implications of these messages. Thus, there may be the potential for an increase in health problems associated with various types of substance use. I contend that people with intellectual disability have been ill-prepared for the responsibilities that are involved with understanding the health issues and making choices that can help them to maintain their own health.

Generally, materials produced to educate the community are of limited instructional value for people with intellectual disability (Campbell et al., 1994), although some school health programs have adopted a proactive approach. Social skills training, goal setting, communication skills directed towards “refusal,” and contingencies that use role play and modeling of desired behavior may be some avenues for educational programs (Degenhardt, 2000). Two school resources that may be useful are “Rethinking Drinking” (1997), with adaptation to the literacy requirements, and the chapter on substance use and misuse in the Piper High School's personal and social education curriculum (Otten, 1999).

The adoption of a healthy lifestyle requires skills and knowledge that need to be linked to an understanding of health. This understanding, developed through education, can then be used to formulate attitudes and values, which subsequently form the basis upon which individuals can take responsibility and begin to self-regulate their own health behaviors. As a result, individuals undertake a range of actions that they believe improve their health and prevent disease.

Health Education: School to Community

Many writers have suggested that schools have a significant role to play in shaping health attitudes and behaviors (e.g., Ashman et al., 1993; Jobling, 1998; Zacijek-Farber, 1998). Zacijek-Farber stated that “many health problems of adulthood seem to have their origin in behavioral patterns formed in adolescence” (p. 209), and education programs in these years can produce life-long effects on a person's health. However, as Jones (1995) stated, “while aspects of health education are now a part of national curriculum . . . little thought has been given to providing for those with disabilities” (p. 415). In a search of Australian school and community programs promoting health, I found a lack of information that was appropriate for individuals with intellectual disability and available to their teachers. In a review of literature with regard to health education for those with a developmental disability, Anderson (1993) lamented the lack of research into aspects of health such as nutrition, weight control, fitness, and other factors that could prevent disease. He also highlighted the need for the development of strategies that could be useful in facilitating health learning. The school years are seen as an appropriate time to develop knowledge and skills about health, for example, Health and Physical Education Year 1 to 10 Syllabus (Queensland School Curriculum Council, 1999). Yet, the provision of health education materials modified for learners who have intellectual disabilities is almost nonexistent, and the amount of time devoted to aspects of healthy lifestyles in school programs for children with disabilities is low (Jobling, 1996; Lockwood, 1998). Rather than using “quick fix” rote-learned responses and compliance, school programs could provide numerous opportunities for healthy lifestyle strategies to be discussed, taught, practiced, and reinforced in order to assist individuals with intellectual disabilities to maintain their health with self-regulatory health behaviors. Three aspects of health education are discussed in the following paragraphs.

Health and Physical Activity

In Queensland, Australia, activities and games in special schools are basically undertaken for fun or recreational benefit (Jobling, 1996), and, at times, the inherent messages given about the importance of exercise to health are contradictory. If, for example, a class visits a recreational site, such as a bowling alley or the swimming pool, from personal observation the visit frequently concludes with the consumption of soft drinks, chips, or other foods of dubious health benefit. As students move into the senior section of the special school, these visits usually increase as the physical education program changes from a program of skill development to one of recreational activities. This change towards an adult context is seen as part of the life skills program at the schools. However, not only is there access to a range of attractive food and drink vending machines at these locations, but also the recreational activities chosen are usually low intensity activities, such as indoor bowling, and have more social than exercise benefits. Activities that combine both exercise and social benefits, such as dancing, cycling, and skating, are not programmed as often. There are bicycle riding programs in some schools, but rarely do these extend into the community, even though safe bicycle paths are available in Brisbane. Bicycle riding not only provides exercise with fitness benefits but also may be a useful method of transportation.

Many authors have reported that individuals with intellectual disabilities lack regular exercise and tend to favor sedentary activities (Chad, Jobling, & Frail, 1989; Edgerton et al., 1994; Jobling, 1989; Pueschel & Sustrova, 1997; Rimmer, Braddock, & Pitetti, 1996; Zacijek-Farber, 1998). In a follow-up study of the lifestyle of a group of 21-year-olds with Down syndrome, Carr (1995) reported that “watching television and listening to music were part of the daily routine for almost all the 21-year-olds with Down syndrome” (p. 95), whereas Seidl (1998) considered that activity programs failed to address the intellectual and adaptive behavior needs and the abilities of individuals with intellectual disability. Also, as noted by Neumayer and Bleasdale (1996), when participants were asked about their lifestyle choices, active recreation was rarely mentioned.

It would seem that a regular active exercise component should always be included and interwoven with other health education within community leisure programs. Research is limited on strategies available to develop and maintain the physical fitness of students with mental retardation (Dyer, 1994; Pitetti & Campbell, 1991); however, Seidl (1998) and James (1993) have produced some excellent guidelines for this purpose. For older adults, James described exercise programs designed to complement the practical aspects of everyday life, such as walking, stair climbing, dressing, and housekeeping. She focused on activities that could maintain overall conditioning and flexibility. Nevertheless, determination of the physical effects of exercise on these individuals has still not been documented (Chanias, Reid, & Hoover, 1996), and studies on how to use data from other analyses that examine interventions (e.g., Dishman, 1994) and design appropriate and beneficial programs need to be conducted. Physical educators should become more involved because they have the knowledge and the resources to improve the poor mobility and low performance skill levels that inhibit active participation and can provide programs that would assist individuals in becoming more competent movers.

In a study that matched 65 obese and 65 nonobese children in school physical education programs for typically developing children, Marshall and Bouffard (1994) suggested that “a remedial avenue in terms of the physical activity component for obesity treatment may be the teaching of motor skills” (p. 303). For individuals with Down syndrome, Jobling and Mon-Williams (2000) reported that some children performed well in the run–utility aspect of a motor proficiency test, and with this level of proficiency, the likelihood of obesity may decrease. Thus, as suggested by Rimmer et al. (1996), physical educators need to work with others to develop a framework to promote interdisciplinary services beginning in school and moving into the community. Dietitians (Cloud, 1997), fitness counselors (Seidl, 1998), and social workers (Zacijek-Farber, 1998) are already emphasizing the necessity for this type of team approach. Chanias et al. (1998) conducted a meta-analysis of 21 studies and made some recommendations for physical fitness studies that could involve several groups of professionals. Inefficient and ineffective mobility and lack of physical skills can inhibit both motivation to participate as well as interest in vigorous activity. Combined with a lack of interdisciplinary support and communication between teachers, dietitians, and other medical care specialists, these factors may be prime contributors to weight increases and lack of fitness in this population.

General Health Education

In order to understand the importance of physical activity in the maintenance of health, individuals need knowledge of body parts and their functions. However, with the exception of the body parts and functions associated with the development of sexual maturity, this is rarely taught or discussed. As a life skill for health, knowledge of sexual organs and their function are given priority over those associated with circulation, digestion, and respiration. Although sex education is a necessary part of any health education program, and may be an aspect that has been overlooked for this population in the past (Edmonson & Wish, 1975; Kempton & Stiggall, 1989), its prominence to the neglect of other aspects inflates its importance. The prevention of disease and the promotion of healthy lifestyle behaviors in health education programs are based on the individual's understanding of cause and effect; but without an overall basic knowledge of body systems, this cause and effect relationship is difficult for students to understand.

Not only is knowledge about the whole body important but, in order to adopt healthy behaviors, knowledge about how the body processes foods, healthy eating habits, and the application of nutritional knowledge to food selection and preparation are essential. Students need to be taught both psychological and physiological factors that relate to their own health, and how to manage them.

Cooking should not only be about the preparation of convenient and easy foods, such as pancakes and pizza, but also enable the students to know and understand which foods to select and their importance in contributing to health. The ability to choose and plan healthy, interesting meals of high nutritional value is an essential life skill for independent living, and several authors have demonstrated the importance of this with young adults who have intellectual disabilities (Arnold-Reid, Schloss, & Alper, 1997; Cloud, 1997; Parsons, McCann, & Reid, 1993). Becher and Pyle (1997) have produced a manual for group home staff and residents to assist them in nutritional planning and improving health-related outcomes.

The importance of drinking plenty of water for general body hydration also needs to be taught and reinforced. Cold water fountains can be provided and situated where residents have easy access to them. Symbols on foods such as the Heart Foundation's “circle with a check” and low-fat alternatives should be taught as a part of the shopping for cooking classes. In community residences, healthy food could be creatively presented, and dining rooms or eating places made attractive and comfortable. Music and flowers are a few special touches that could be added. The regular intake of foods high in fat at breakfast and lunch, and regular visits to fast food outlets or fast food vans arriving at the workplace, which I have observed on numerous occasions, should be discouraged. For those with Prader-Willi syndrome, even infrequent visits need careful supervision. The powerful advertising materials at these outlets and the “two for one” pricing strategies need to be balanced with teaching and learning about making healthy choices. Students with intellectual disability can learn about keeping their body healthy and about appropriate home hygiene and safety skills, but more needs to be done to improve the integration of this knowledge into their independent lifestyles.

This necessity is further underscored by the fact that the incidence of obesity among individuals with intellectual disability is high (Beange et al., 1995; Kelly, Rimmer, & Ness 1986; Rimmer et al., 1996). Among school students, an observable level of creeping obesity has been reported (Jobling, 1997,). At all ages in childhood, the development of obesity is of concern, as childhood obesity is positively related to overweight and associated health problems in adulthood (Chad et al., 1989; Rimmer, Braddock, & Fujiura, 1994). Obesity is a complex and multifaceted problem that is difficult to treat (Rippe, Crossley, & Ringer, 1998), so it becomes important for professionals to design preventive programs and take into account the development of knowledge and the particular requirements of those with intellectual disability. For example, individuals with Prader-Willi syndrome require programs that provide motivation to control eating and a balance between the external controls and the teaching of skills that are necessary to maintain weight with reduced caloric diets, regular exercise, and frequent weight checks (Joseph & Overmier, 1997; Waters, 1999). Sometimes it seems that educational programs commence only when obesity becomes a recognizable problem (Golden & Hatcher, 1997), but by then eating patterns have often been well-established and re-education is more difficult. Preventative programs need to start early if participants are to have the health benefits throughout life.

In schools, the development of a whole school policy and an integrated approach to the adoption of a healthy lifestyle is necessary. Model programs such as Health Promoting Schools (1996), Queensland Health Promoting Schools Network (1999), and Team Nutrition, U.S. Department of Agriculture (Kennedy, 1996) are necessary. Programs such as those produced by the National Heart Foundation (1996), Jump Rope for Heart (1991) and the Health Promotion Project in Wisconsin (1999), are relevant and easily adapted to meet the needs of students with intellectual disabilities. The use of portfolios modified for students with intellectual disabilities could provide an alternative educational and assessment tool for students in health education classes (Cleary, 1993). These portfolios could be continued into the students' community living arrangements, where they would provide information and continuity of health management. Suggestions to help those who have difficulty in reconciling practice with theory could include more dietary education and supervision, positive motivation through recorded “weigh-ins,” and the development of strategies for resisting temptations, such as avoiding travel routes that pass coin-operated food displays and fast food outlets.

Social Supports for Health

The relationship between social support and physical health has been well-established (Connell & D'Augelli, 1990), and many health education programs employ social influences with knowledge and skills as training components (Degenhardt, 2000; Resnicow, Cherry, & Cross, 1993). Aspects of social support that encourage the adoption of healthy behavior have been shown to develop both from home and in school (Jones, 1995; Rozin, 1988). Parents play an important role in modeling health behaviors, and early and consistent parental guidance can establish healthy behavioral patterns (Waters, 1999). There is evidence that this consistent modeling can produce long-lasting health benefits (Vali-Smith et al., 1997), and, conversely, when unhealthy habits are modeled they can contribute to substance disorders (Christian & Poling, 1997; Westermeyer, Kemp, & Nugent, 1996). For example, the use of substances such as tobacco and alcohol by individuals with mild intellectual disability has been shown to be heavily influenced by the habits of family members and, to a lesser extent, peers (Westermeyer et al., 1996). This may apply to other potentially harmful substances as well as alcohol and tobacco.

For example, generally, it would seem that in special school settings and community settings, there is an entrenched practice of using food as a reinforcer. This models a “pro-food” philosophy to students and residents. I have observed that community outings are often associated with eating of food (e.g., to McDonalds, Pizza Hut, or “all you can eat” places such as Sizzlers) and that these outings often are a reward for good work or behavior or a result of money earned in some work-training program. Families and professionals in schools (teachers and therapists) and in community residences (care staff) need to be careful about the use of food as a reinforcer. In a study in which parental actions were investigated in relationship to obesity, Hammer et al. (1972) reported that the mothers of teenagers who were obese tended to use food to reinforce good behavior more frequently than did mothers of teenagers who were not obese. Alternate reinforcers should be considered (Torabi, Bailey, & Majd-Jabbari, 1993), and education about the dangers of poor health habits need to be presented in terms of consequences.

Modeling has a powerful and direct effect on initiation of behavior (Flay et al., 1994). More thought needs to be given to the implications of the reinforcement used in educational and family environments and the health habits modeled in community settings. Parents, with the assistance of community awareness programs, can provide opportunities to assist in the development of proactive and positive health behaviors that encourage and enable individuals with intellectual disability to take responsibility for their own health.

Conclusions

The development of a healthy lifestyle requires relevant knowledge and skills as well as the opportunities to develop independent behaviors that will enhance one's life options. Professionals in schools, residential settings, and community services need to examine carefully factors such as exercise, general health education, and social support in their programs and the contribution these make to individuals with intellectual disability and their development of a healthy lifestyle. Across curriculum areas in schools and within community and residential programs, there is a need to develop consistency and continuity in the approach to health and health education. Continuity should be part of the transition process as young people with an intellectual disability move from school into the community.

At the policy level, a framework is required for health education issues across the lifespan (Hand & Reid, 1998). An overview of the literature suggests that within this policy framework, regular managed health care provisions, preventative strategies, educational programs, and professional training are particular aspects that require attention. Through the development and adoption of a “best practice model,” independence and choice can be balanced with responsible modifications that promote health in least restrictive community environments. Within government departments, these frameworks should support a healthy lifestyle in the community (Kastner et al., 1997; Pulcini & Howard, 1997). Interprofessional teams who work across the various environments in which individuals with intellectual disabilities live, learn, work, and play are needed to promote and address some of the issues raised in this paper.

Families and community health promotion agencies such as the National Heart Foundation, QUIT, Drug Arm, and the Cancer Council should also be encouraged to help in this task by assisting in the development of materials that meet the health education needs of individuals with intellectual disability.

Many people continue to behave in ways that are detrimental to their health, but for individuals with intellectual disabilities, there are real concerns about their lack of opportunities to acquire knowledge and develop lifestyle patterns that are healthy. The community, in which many people in this population now live, abounds with unhealthy images, and it seems that both schools and community programs have failed to develop programs to support the health education of this group. Aspects of lifestyle related to health, such as diet, exercise, and substance abuse, receive limited attention in school settings, and modifications to community programs are almost nonexistent. Naturally, choice and independence need to be maintained, but educational materials that help individuals to learn how to adopt and maintain behaviors that promote health should be a challenge to educators.

There are still many fundamental issues to be researched if we are to develop effective strategies and interventions that will assist children and adults with intellectual disabilities to understand, choose, and value healthy behavior. Examples are how individuals with intellectual disability use health information, what factors influence their healthy choices, and which teaching and learning strategies should be adopted to assist them in becoming and remaining healthy. Without good health, individuals with intellectual disability may be unable to function to the best of their abilities and could become more isolated from community settings and friends. Poor health should not become an additional handicap, but it would seem that health education must be extended beyond cooking and sex education if this prospect is to be avoided.

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Author notes

Author:Anne Jobling, PhD, Senior Lecturer in Special Educationand Co-Director of Down Syndrome Research,Fred and Eleanor Schonell Special EducationResearch Centre, The University of Queensland,Brisbane Qld 4072. (a.jobling@mailbox.uq.edu.au)