Program Considerations for Integrating Children with Disabilities into Community Sports and Recreation Programs
Despite the positive progression in the acceptance and inclusion of children with disabilities in American society, these children are still sometimes at a disadvantage when it comes to opportunities to maintain their health through exercise and community recreation programs, including sports programs and leagues. Within the pediatric population, children with disabilities are rarely encouraged to lead active lives, while recommendations for exercise and physical activity are given to their nondisabled siblings and peers (Wilson, 2002).
Much is at stake when children with disabilities are not encouraged to be physically active. It is thought that physical activity patterns established in childhood form a foundation for lifelong physical activity (Ayyangar, 2002) and, therefore, subsequent health. As reviewed by Wilson (2002), studies have shown that children with disabilities who exercise can increase strength, bone mineral density, vital capacity, and mobility. Those gains are critical when it comes to the prevention or attenuation of secondary conditions or disabilities. As noted by Steele et al. (1996), children with physical disabilities are at great risk for secondary conditions such as heart disease, stroke, respiratory problems, and emotional disorders. To offset the secondary conditions associated with disability, children with disabilities need outlets to be active.
The number of choices for exercise and sport programs for children with disabilities does not mirror the breadth and range of opportunities afforded to nondisabled children.
Nonetheless, a well-thought out, carefully designed school-based or community recreational sports program that takes into consideration the stressors and barriers faced by families who raise children with disabilities, can pay great dividends in the overall health and well-being of children with a variety of disabilities.
Prevalence of Children with Disabilities
Mudrick (2002) summarizes two different paradigms that have been developed to compile statistics for the population of children with disabilities. The first classifies disability based on activity limitations, defined as the inability "to attend school or play, or engage in other age-normative activities" (Mudrick, 2002). Based on these criteria, approximately 6.5% of all children under the age of 18 (4.4 million), have a disability. However, this figure slightly underestimates the total because it does not include children who are institutionalized because of their disabilities (Mudrick, 2002). A second approach to determining the number of American children with disabilities is the functional limitation paradigm. Functional limitations are defined as "restrictions in activities due to chronic health conditions" (Mudrick, 2002). Using this definition, about 14.8% of all children under age 18 (10.3 million) have chronic disease or disability (Mudrick, 2002). Estimates using the second approach are much greater because they include "children whose service use is beyond routine," a requirement for the identification of Children with Special Health Care Needs (Mudrick, 2002). This classification helps children tap into funding streams through the Maternal and Child Health Bureau's Title V program for a variety of social service programs (Mudrick, 2002).
Demographics of Children with Disabilities
Exercise professionals - including physical education teachers, camp counselors, coaches, and personal trainers - who work with children with disabilities should have a basic understanding of the demographic make-up of children with disabilities to better serve their exercise programming needs. For example, the proportion of children who experience mobility limitations due to disability is on the decline. The most common disabilities for children are cognitive disabilities and asthma (Mudrick, 2002). Boys are more likely than girls to be classified as having a disability (Mudrick, 2002). But Bluechardt, Wiener and Shephard (1995) noted that gender bias might be leading to an underestimation of the number of girls with a disability. In a learning disability context, the authors noted that some parents might have more interest in the academic achievements of their sons over their daughters. In addition, due to "social conditioning and/or inherent characteristics, fewer girls react to their learning disability by disruptive behavior" and thus fewer girls are labeled as having behavior or cognitive problems (Bluechardt, Wiener & Shephard, 1995). The association between race and disability, after controlling for other factors, is murky (Mudrick, 2002). On the other hand, a clear association has been found between poverty and childhood disability, and family structure and disability. Children from families with low socioeconomic status and children from single-parent households have a greater likelihood of being disabled (Mudrick, 2002). Mudrick (2002) cautioned that socioeconomic status and family structure must be assessed via "acknowledgment of the role of societal limitation in disability" (Mudrick, 2002). In other words, it is important to distinguish between risk markers and risk factors. Low paychecks and single parenting in and of themselves probably don't contribute to disability. Exposure to lead, rats, and other environmental toxins might. Social structure barriers such as decreased access to health insurance, health care and delayed diagnoses also might. Professionals planning exercise programs for children with disabilities should think of childhood disability as an occurrence in the lives of boys and girls from all racial backgrounds that encompasses primarily (but not exclusively) cognitive and respiratory impairments. Professionals should canvas poor as well as affluent populations when recruiting children with disabilities for programs.
Psychosocial and Physical Factors
Children with disabilities arguably represent one of this country's most vulnerable populations, facing far more mental and physical health issues than children without disabilities. In this vein, exercise staff may need to communicate closely with social workers and therapists to monitor the mental health of their charges. According to Ayyangar (2002), the physical health management of children with disabilities requires the careful monitoring of several conditions, such as contracture development due to muscle imbalance from myopathies or neuromuscular diseases. Spasticity is a health issue for many children with disabilities, especially those with cerebral palsy [CP], brain injury [BI], spinal cord injury [SCI] and stroke. Spinal problems encompass a range of health issues. Children with Down syndrome, in particular, are at risk for atlanto-axial instability. Children with BI, CP, SCI, spina bifida [SB] or Duchenne muscular dystrophy [DMD], need to be monitored for scoliosis or lateral curvature of the spine. Osteopenia and resultant fractures from immobility, or stress fractures from transfers or normal activities, are an added health concern, often as a result of poor eating habits and medication side effects. Finally, pressure ulcers should be avoided at all costs and are more likely to occur in children whose sensation is impaired, such as those with SCI and SB (Ayyangar, 2002).
Lifestyle Health Behaviors
The range of social and medical issues that children with disabilities face may provide an intimidating backdrop for exercise professionals to launch physical activity programs, especially given that many children with disabilities are inactive. A Canadian study assessed the health promotion behaviors of 101 adolescents with physical disabilities, comparing them to a large national sample. Steele et al. (1996) found that 39% of those surveyed reported that they never exercised, compared to only 6% of the non-disabled sample. Those with physical disabilities were also significantly less likely to participate in activities that "provide opportunities for exercise, self-improvement and socialization" (Steele et al., 1996). It would appear that participation in any physical activity program, even one with a minimal time outlay, would be a monumental lifestyle change for children with disabilities and their families.
Of course, some children with disabilities are active, and sports program planners should have a sense of the activities that children with disabilities and their families have been able to incorporate into their lives. A study by Modell, Rider and Menchetti (1997) surveyed the parents of 28 children with developmental disabilities regarding their children's physical activity pursuits and the settings in which they occurred. Results showed that 55% of the children's sports activities occurred with their families; 22% took place in inclusive settings, defined as outlets with non-disabled children, and 23% took place in noninclusive settings, defined as segregated, or those solely with children with disabilities (Modell, Rider & Menchetti, 1997). It may be that too many barriers face families who might want their child with a disability to participate in an activity outside of "family time." According to the survey, the most common physical activity pursued was swimming (25 incidences), followed by walking/jogging (16), bicycling (10), bowling (9), and basketball (9) (Modell, Rider & Menchetti, 1997). What is interesting is that the top three activities are all individual, rather than team-oriented sports. Coaches or program leaders may opt to use an "individual sport" with this population and may need to employ creative strategies to promote interaction and teamwork among participants, if those socio-relational goals are a priority.
One challenge in outlining very general program considerations for children with disabilities is keeping in mind that children with disabilities encompass a tremendous range of disabilities, ages, barriers and personalities. A more recent Canadian study drives this point home by uncovering some of the differences in physical activity patterns among children who have different chronic medical conditions. Longmuir and Bar-Or (2000) found that physical activity patterns in children with physical disabilities or chronic medical conditions significantly differed by age. Younger children were more active (Longmuir & Bar-Or, 2000). The authors suggest this may stem from the physical education requirement found in the elementary schools, but not in the high schools, in the areas they surveyed (Longmuir & Bar-Or, 2000). Significant differences were also found in habitual physical activity levels depending on disability type; youths with chronic medical [CM] conditions (i.e. cardiac defects, arthritis, kidney problems) (47%), and those who were hearing-impaired [HI] (53%), were significantly more active than children with physical disabilities [PD] (26%) or those with vision impairment [VI] (27%). A further differentiation provides an even clearer picture of physical activity trends in one subpopulation. Within the PD category, significant differences were found in regard to diagnostic category. Children with HI (49%) or spina bifida [SB] (40%) were significantly more active than those with CP (18%) or muscular dystrophy [MD] (13%). This type of study may help exercise professionals recognize which sub-populations of children with disabilities are in dire need of health intervention strategies or exercise barrier remediation.
Children with disabilities face roadblocks long before participation within a sports program. In addition, knocking down a barrier is rarely a one-time occurrence, but is something that must be wrestled with before, during, and after participation in a physical activity program. These barriers represent a breadth of issues and highlight the complex inter-relationships and inter-dependence of children with disabilities and their parents and caregivers.
Failla and Jones (1991) detail the stressors that affect families raising a child with a disability, including acute, chronic or transition-related stressors: Acute stressors occur as periodic incidents related to the child's disability. Chronic stressors include concerns about the future, financial limitations, and the stigma attached to families of children with special health care needs by society. Transition-related stressors are usually linked to significant developmental milestones that occur throughout the child's lifespan, such as entry into school (Failla & Jones, 1991).
The ability of families to cope with these stressors is examined in relation to a coping mechanism labeled "family hardiness" (Failla & Jones, 1991). Some parents cope with raising a child with a disability by being overprotective and restricting their child's exposure to peer culture. These were factors cited by Steele et al. (1996) as theories why children with disabilities participate in fewer risk-taking behaviors such as drinking and smoking than their nondisabled peers. These restrictions might also prevent children with disabilities from participating in positive social activities.
While garnering a good understanding of the physical, psychosocial, and environmental constraints that children with disabilities face is an exhaustive task; it is merely the drum roll to the set-up of a sports program for children with disabilities. Before the program can get off the ground, the requisite paperwork including pre-participation history and physical examination forms are necessary. Wilson (2002) argues that standard medical and participation forms are inadequate to help program planners design or mainstream children with disabilities into an exercise program. This information is needed to identify health issues that might affect participation, troubleshoot potential injury scenarios and determine overall health. Wilson provides sample health history and sports physical exam forms that address the complexity of health issues that face children with disabilities including questions that generally do not apply to children without disabilities such as "Do you have any current pressure sores or skin problems?", "Do you wear braces or prosthetics?" or "Have you had a back fusion?" (Wilson, 2002).
General Discussion Questions
It is likely that the pre-participation and physical examination forms will uncover one or more issues that need to be discussed or resolved among the team of professionals with an interest in the child's sports participation, such as the child's parents/guardians, pediatrician, potential coach, physical education or adapted physical education teacher, interpreter, league referees, playing field guide, exercise physiologist and others. The child with the disability should also have input. Some questions to help guide this discussion have been provided by an NIH Consensus Panel:
- What are the child's cognitive abilities; what are the child's social skills?
- What effect does the disability or treatment have on stamina and skills?
- Will specific sports activities pose a substantial risk to health and wellbeing?
- Will specific interventions or modifications and conditioning or preparation be required?
- How could an activity be modified to allow a child to obtain maximal benefit?
- What level of activity would be best for this particular child? (Cooper et al., 1999).
The NIH Consensus Panel referred to above (Cooper et al., 1999) noted that exercise goals for children with disabilities may need to be individualized. Several children with disabilities may participate in the same program but for different reasons. Sample goals may include one or more of the following: improve VO2max, decrease obesity, increase muscle strength and endurance, enhance flexibility, develop self-esteem, decrease maladaptive behavior, foster social integration and social skills, and develop teamwork (Cooper et al., 1999).
Measuring Physical Activity and Work Capacity
When a program goal such as increased VO2max has been selected, the objective completion of that goal could be determined by comparison to baseline data. Unfortunately, few measures of physical activity have been validated in children with disabilities (Fernhall & Unnithan, 2002). Fernhall and Unnithan (2002) outline several possible protocols that could be used: doubly labeled water, direct observation, surveys, heart rate monitoring, and activity monitors. Pros and cons for each method are provided (Fernhall & Unnithan, 2002). The same issues, namely lack of validated test methods, also plague measurements of work capacity in this population for maximal, submaximal and field tests (Fernhall & Unnithan, 2002). The protocol for measuring work capacity in children cannot mimic that of adults for many reasons noted by Fernhall and Unnithan (2002). For example, the usual maximum heart rate formula (220-age) "is invalid in children because the maximal heart rate of children does not change from age 5 years through adolescence" (Fernhall & Unnithan, 2002).
Unlike sports programs that target adults, programs that cater to children have the added pressure of taking into consideration "developmental and growth-related issues that predispose them to unique injuries" (Wilson, 2002). Wilson (2002) suggests that program planners keep in mind the following general guidelines when designing activities for specific ages. For the 3- to 5-year-old age group, fundamental skills include throwing, walking, running and wheeling. Activities should be uncomplicated and repetitive, emphasizing mobility. Children in the 6- to 9-year-old age group have developed foundational movement skills. This might be the time to try recreational sports. This is the key time for integrating more complex skills and trying out several different types of activities. This is also the age that jump-starts athletic careers and forms attitudes about physical activity that continue into adulthood. Full-fledged participation in sports is found in the 10- to 12-year-old population as these children are mastering complex motor skills. As competition increases, it is still appropriate to focus on technique and skills refinement. Some children begin to specialize in one or two sports at this stage (Wilson, 2002).
Some of the special health concerns that arise for children with disabilities identified earlier can be managed with some foresight. Wilson (2002) provides many examples of ways to prevent injury in athletic children with disabilities. Children with spinal cord injury [SCI], who might have abnormal sensory function, can wear aqua boots in the pool to avoid pressure ulcers. Likewise, children who use a racing wheelchair may require "strategically placed padding" to prevent skin breakdown. Children with SCI are also at risk for thermoregulatory dysfunction for many reasons, including their reduced capacity to sweat (Wilson, 2002).
Other disability populations have unique issues to keep in mind. Children with SB often have ventricular shunts in place, which should not necessarily keep them off the field; individual assessments should be made. Children with CP often experience spastic quadriceps muscles, which can lead to knee pain (Wilson, 2002). Children with neuromuscular disease expend more energy to move than unimpaired children. This condition causes this population to become fatigued quickly during locomotion; it is important to make adjustments so that the cardiovascular system is not overtaxed (Cooper et al., 1999).
Legal Mandate for Inclusion
If coaches or directors of community physical activity programs are not inspired to integrate children into sports leagues; then perhaps the threat of legal action will encourage them to reconsider. After all, integrating children with disabilities into community-based exercise programs is mandated by law through Section 504 of the Rehabilitation Act of 1973, which protects individuals with disabilities from discrimination from programs that receive federal funds; through IDEA (1990), which mandates physical education programs for children in school; and the Amateur Sports Act (1978) and Olympic and Amateur Sports Act (1998), which require the U.S. Olympic Committee to provide amateur athletic contests for athletes with disabilities (Wilson, 2002). The Americans with Disabilities Act [ADA] (1990) is perhaps the most sweeping measure to date to eliminate discrimination against individuals with disabilities.
Block (1995) describes in detail how the ADA impacts youth sports in all its intricacies and how communities must provide accessibility, but without incurring an undue burden. For example, children must be allowed to participate even if that participation poses a real threat to the child's safety. It used to be that school districts could disallow contact sport participation for those children who had only one eye or one kidney; under the ADA, these adolescents should be educated as to the risks in playing these sports, but may opt to play, hopefully after consulting with their families and family doctors (Block, 1995). In the context of the ADA, the "readily accessible" parameter is illustrated through this example: if a student with a visual impairment doesn't have the skill level of other participants, then he or she doesn't have to be chosen for the volleyball team, but does have to be able to try out. Again using the example of the child with a visual impairment, an "undue burden" might be foisted on an athletic league if everybody in the league had to wear blindfolds; a more reasonable accommodation might be providing a guide to assist this player during the course of a game (Block, 1995).
The inclusion of children with disabilities into school or community-based sports programs is a challenge requiring a comprehensive approach that takes into account a myriad of program considerations: family income, history of abuse or neglect, exercise contraindications, current health promotion behaviors, sport preference, community financial resources, parental involvement, the training background of coaches, and the availability of interpreters and guides. This list is by no means exhaustive. It should be stressed that even if non-physical health goals of physical activity are not achieved; exercise interventions should continue to be a part of the lives of children with disabilities. In their review of exercise programs in the treatment of children with learning disabilities, Bluechardt, Wiener and Shephard (1995) came to the conclusion that very little evidence shows that exercise improves actual motor ability and perceived motor proficiency and academic competence. Nonetheless, exercise should still be encouraged based on its ability to improve so many other factors such as cardiovascular health (Bluechardt, Wiener & Shephard, 1995). In the same review, the authors tout the merits of activities that foster "cooperative play" as opposed to the traditional model of sports play epitomized by professional sports programs (Bluechardt, Wiener & Shephard, 1995). Any physical activity program for children with disabilities must in essence target the whole family; it must be a routine that can be easily incorporated into a family's schedule and thus has a better chance of becoming a priority that continues to yield health outcomes that far outlast a season of play.
By keeping these points in mind, coaches, parents, and teammates can work together to ensure that all players have the opportunity to participate in baseball in a safe, respectful and positive environment.
For more information and resources for the community of athletes with a disability, please visit NCHPAD at www.nchpad.org.
- American Association of Adapted Sports Programs (AAASP)
- Nelson, M. B. (1994). The stronger women get, the more men love football: Sexism and the American culture of sports. New York, New York: Avon Books.
- Wilson, P. E. (2002). Exercise and sports for children who have disabilities. Physical Medicine and Rehabilitation Clinics of North America, 13(4), 907-923.
- Steele, C. A., Kalnins, I. V., Jutai, J. W., Stevens, S. E., Bortolussi, J. A., & Biggar, W. D. (1996). Lifestyle health behaviours of 11- to 16-year-old youth with physical disabilities. Health Education Research, 11(2), 173-186.
- Mudrick, N. R. (2002). The prevalence of disability among children: Paradigms and estimates. Physical Medicine and Rehabilitation Clinics of North America, 13(4), 775-792.
- Modell, S. J., Rider, R. A., & Menchetti, B. M. (1997). An exploration of the influence of educational placement on the community recreation and leisure patterns of children with developmental disabilities. Perceptual and Motor Skills, 85(2), 95-704.
- Longmuir, P. E., & Bar-Or, O. (2000). Factors influencing the physical activity levels of youths with physical and sensory disabilities. Adapted Physical Activity Quarterly, 17, 40-53.
- Gaebler-Spira, D., & Thornton, L. S. (2002). Injury prevention for children with disabilities. Physical Medicine and Rehabilitation Clinics of North America, 13, 891-906.
- Fernhall, B., & Unnithan, V. B. (2002). Physical activity, metabolic issues, and assessment. Physical Medicine and Rehabilitation Clinics of North America, 13, 925-947.
- Failla, S., & Jones, L. C. (1991). Families of children with developmental disabilities: An examination of family hardiness. Research in Nursing & Health, 14, 41-50.
- Bluechardt, M. H., Wiener, J., & Shephard, R. J. (1995). Exercise programmes in the treatment of children with learning disabilities. Sports Medicine, 19, 55-72.
- Block, M. E. (1995). Americans with Disabilities Act: Its impact on youth sports. Journal of Physical Education, Recreation & Dance, 66, 28-32.
- Ayyangar, R. (2002). Health maintenance and management in childhood disability. Physical Medicine and Rehabilitation Clinics of North America, 13, 792-821.