Promoting the Participation of Children and Adolescents With Disabilities in Sports, Recreation, and Physical Activity
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CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 Promoting the Participation of Children and Adolescents With Disabilities in Sports, Recreation, and Physical Activity Paul S. Carbone, MD, FAAP,a Peter J. Smith, MD, MA, FAAP,b Charron Lewis, MD, FAAP,c Claire LeBlanc, MD, FAAP,d COUNCIL ON CHILDREN WITH DISABILITIES, COUNCIL ON SPORTS MEDICINE AND FITNESS The benefits of physical activity are likely universal for all children, abstract including children and adolescents with disabilities (CWD). The a participation of CWD in physical activity, including adaptive or therapeutic Department of Pediatrics, The University of Utah, Salt Lake City, Utah; b Section on Developmental and Behavioral Pediatrics, The University of sports and recreation, promotes inclusion, minimizes deconditioning, Chicago, Chicago, Illinois; cDivision of Developmental-Behavioral optimizes physical functioning, improves mental health as well as academic Pediatrics and Psychology, Rainbow Babies and Children’s Hospital, Cleveland, Ohio; and dDepartment of Pediatrics, McGill University, achievement, and enhances overall well-being. Despite these benefits, CWD Montreal, Quebec, Canada face barriers to participation and have lower levels of fitness, reduced rates of participation, and a higher prevalence of overweight and obesity All authors participated in conception, design, drafting, and critical revision of the clinical report and approved the final manuscript as compared with typically developing peers. Pediatricians and caregivers may submitted. overestimate the risks or overlook the benefits of physical activity in CWD, This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have which further limits participation. Preparticipation evaluations often filed conflict of interest statements with the American Academy of include assessment of health status, functional capacity, individual activity Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of preferences, availability of appropriate programs, and safety precautions. Pediatrics has neither solicited nor accepted any commercial Given the complexity, the preparticipation evaluation for CWD may not involvement in the development of the content of this publication. occur in the context of a single office visit but rather over a period of time Clinical reports from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and with input from the child’s multidisciplinary team (physicians, coaches, external reviewers. However, clinical reports from the American Academy of Pediatrics may not reflect the views of the liaisons or physical education teachers, school nurses, adaptive recreation specialists, the organizations or government agencies that they represent. physical and occupational therapists, and others). Some CWD may desire to The guidance in this report does not indicate an exclusive course participate in organized sports to experience the challenge of competition, of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. and others may prefer recreational activities for enjoyment. To reach the All clinical reports from the American Academy of Pediatrics goal of inclusion in appropriate physical activities for all children with automatically expire 5 years after publication unless reaffirmed, disabilities, child, family, financial, and societal barriers to participation revised, or retired at or before that time. need to be identified and addressed. Health care providers can facilitate DOI: https://doi.org/10.1542/peds.2021-054664 participation by encouraging physical activity among CWD and their families during visits. Health care providers can create “physical activity To cite: Carbone PS, Smith PJ, Lewis C, et al.; AAP Council on prescriptions” for CWD on the basis of the child’s preferred activities, Children With Disabilities, Council on Sports Medicine and Fitness Promoting the Participation of Children and functional status, need for adaptation of the activity and the recreational Adolescents With Disabilities in Sports, Recreation, and opportunities available in the community. This clinical report discusses the Physical Activity. Pediatrics. 2021;148(6):e2021054664 PEDIATRICS Volume 148, number 6, December 2021:e2021054664 FROM THE AMERICAN ACADEMY OF PEDIATRICS
importance of participation in sports, recreation, and physical activity for CWD and offers practical suggestions to health care providers. GLOSSARY OF TERMS (including blindness), serious associated congenital heart emotional disturbance, orthope- defect, difficulty swallowing, Children and youth with special dic impairments, autism spec- cerebral palsy, and a urologic health care needs (CYSHCN) are trum disorder, traumatic brain condition. This child would typi- “children who have or are at injury, other health impairments, cally require the care of a pri- increased risk for a chronic phys- or specific learning disabilities mary care physician; multiple Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 ical, developmental, behavioral or and who, by reason thereof, need pediatric medical subspecialists emotional condition and who special education and related or pediatric surgical specialists, also require health and related services.3 Although not part of home nurses, and rehabilitative services of a type or amount the IDEA definition, the World and habilitative therapists; com- Health Organization International munity-based services; extensive beyond that required by children pharmaceutical therapies; special generally.”1 In the United States, Classification of Functioning, Dis- ability and Health (ICF) frame- attention to his or her nutritional 19% of children have a special needs and growth; and durable health care need.2 CYSHCN are a work provides an important medical equipment to maintain diverse group of children, rang- alternative framework for dis- health, maximize development, ing from children with chronic ability because of its emphasis on and promote function. conditions, to those with medical body function, pursuit of mean- Participation, defined by the ICF, complexity, to children with cog- ingful activities, and community is the nature and extent of a per- nitive, behavioral, or emotional participation as primary determi- son’s involvement in desired conditions. The term CYSHCN nates of the health of individuals activities, such as recreation, lei- includes children with disabilities rather than emphasis on any par- sure activities, and community (CWD) and children with medical ticular diagnosis or deficit (Fig 2).4 life. The ICF also emphasizes the complexity, whom are described Children with medical complexity interconnection of contextual fac- below and shown in Fig 1. have multiple significant chronic tors, environmental and personal, CWD are defined under the Indi- health problems resulting in that can have profound influen- viduals with Disabilities Educa- functional limitations, high health ces on participation. For example, tion Act (IDEA) as children with care service needs, and often the finding out what recreational intellectual disabilities, hearing need for or use of medical tech- activities are enjoyable and fun impairments (including deaf- nology.5 An example of a child for CWD (personal factors) and ness), speech or language impair- with medical complexity is one supporting families (environmen- ments, visual impairments with a genetic syndrome with an tal factors) can foster increased community participation and bol- ster overall health.6,7 Physical activity refers to any body movement produced by skeletal muscles that requires energy expenditure.8 Exercise is planned, structured, Cognive and behavioral impairments and repetitive physical activity that aims to improve or maintain one or more component of physi- cal fitness.8 Exercise may be subdi- vided into aerobic (cardiovascular impairments endurance), flexibility (increase muscle and joint range of motion), anaerobic (resistance training), and high-impact weight-bearing exercise (that promotes bone FIGURE 1 Diverse subgroups within CYSHCN. CMC, children with medical complexity. health).8 2 FROM THE AMERICAN ACADEMY OF PEDIATRICS
with cognitive or behavioral impairments. Furthermore, the subgroups within CWD are also overlapping and can shift over time, such as the case in which a child with primary motor impairments as a young child might be more impacted by cognitive or behavioral impairments as an adolescent (Fig 1). Regardless of the subgroup, CYSHCN and all children with different Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 abilities are at risk for being “left out,” which can adversely affect FIGURE 2 The World Health Organization International Classification of Functioning, Disability and wellness, community integration, and Health. Reprinted with permission from World Health Organization. Towards a Common Language for Functioning, Disability and Health. Geneva, Switzerland: World Health Organi- full actualization of their zation; 2002:9. individuality. Although it is hoped that children with and without disabilities engage in physical activity PAVS, physical activity vital sign. provides CWD the opportunity to together, there will be times when AAI, atlantoaxial instability. achieve better physical and mental CWD and their families opt for health, develop skills and adaptive programs that are focused INTRODUCTION competencies, express creativity, specifically on their needs. It must International efforts to promote the form friendships, and improve also be noted that there is a well-being of CWD through quality of life.20–23 Thus, the heterogeneity of adaptive recreation participation in exercise, sports, American Academy of Pediatrics and sports programs, varying both by Bright Futures: Guidelines for Health the type of primary impairment they recreation, and physical activities Supervision of Infants, Children, and are focused on and by the began with the first competitive Adolescents, Fourth Edition, includes competitive levels of the programs. sporting event for individuals with promotion of physical activity as a For example, Paralympians are high- disabilities in 1948, followed by the key health promotion theme and performance competitive athletes first Paralympics competition in includes recommendations for who generally self-identify as 1960. Special Olympics was health care providers to help primarily having physical or visual established in 1968 and is now the CYSHCN and their families identify impairments, whereas Special largest recreational program for appropriate and enjoyable activities children and adults with intellectual Olympians are often individuals with and implement adaptations based disabilities, with 5.5 million athletes intellectual and developmental on need and ability.24 in 1930 countries.9 Despite the disabilities who compete in many success of these programs, This clinical report discusses the different sports at various competitive opportunities for CWD to participate importance of physical activity for levels.9,25 There are also sports in physical activity, exercise, or CWD, reviews potential barriers to programs for people with hearing competitive sports remain limited, inclusion, and offers practical impairments, with the most elite and they are less likely to solutions for clinicians to facilitate being the Deaflympics.26 Although participate compared with their participation. Of note, the terms adaptive recreation programs have peers without disabilities.10–12 In CYSHCN, CWD, and children with existed for more than 50 years, the absence of such opportunities medical complexity are overlapping recently there has been accelerated and the encouragement to (Fig 1). This clinical report focuses growth in the number of programs, participate, many CWD engage in on the needs of CWD, but many of especially those with a primary more sedentary and solitary the comments and recommendations purpose of fostering physical activity activities, leading to a higher apply also to the larger group of in a noncompetitive, fun environment. prevalence of overweight and CYSHCN. However, not all points or Whatever the activity or the level of obesity, lower levels of problems apply equally to the competition, health care providers cardiorespiratory fitness, and diverse subgroups of CWD. For can engage in shared decision-making increasing social isolation.13–19 example, some recommendations with CWD and their families with the Taking part in physical activity may apply more to children with goal of pursuing appropriate through recreation and sport physical impairments or children opportunities for physical activity.27 PEDIATRICS Volume 148, number 6, December 2021 3
BENEFITS OF PARTICIPATION IN families identify appropriate and as well as with improving academic PHYSICAL ACTIVITIES enjoyable physical activities and achievements.21 For example, The benefits of physical activity are implement adaptations on the basis of participants in Special Olympics likely universal for all children, their needs and abilities. show heightened self-esteem, including those with disabilities. perceived physical competence, and CWD are underrepresented in Physical activity also has benefits for peer acceptance when compared exercise intervention research, children with primarily cognitive with nonparticipants.47 Physically resulting in a limited understanding and behavioral disabilities. Children active individuals with cerebral of how research involving children with autism spectrum disorder palsy experience higher quality of without disabilities can be (hereafter referred to as autism), life and happiness compared with who are more likely to be diagnosed those who are less active.20 Children Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 translated into guidance for physical activity programs for CWD. The with overweight or obesity, have with autism who have higher levels limited research conducted to date this risk attenuated with regular of participation in organized physical activity and sports activities, including sports, have points to at least short-term benefits participation.36 Short periods of better social-emotional adjustment for CWD, such as improvements in walking or running before as well as reduced loneliness and aerobic capacity, muscular strength, educational sessions also help depression.48,49 Children with physical and cognitive function, body children with autism increase the muscular dystrophies who weight and composition, social skills, proportion of correct academic participate in physical activities, relationships, and psychological well- responses and work tasks being.28–30 Although many studies of such as swimming, benefit by completed in school settings.37,38 cultivation of friendships, increased exercise interventions for children Other exercise interventions for self-confidence, and enjoyment.50 with physical disabilities have small children with autism, such as Children with hearing impairment sample sizes and lack randomization, horseback riding, martial arts, who participated in a 3-month ice they support safe participation and swimming, yoga, or dance, can result skating program were found by improvements in fitness and well- in better social responsiveness and their parents to have improvements being.31 Several studies rated from decreased irritability, stereotypical in self-esteem, behavior, and sleep moderate- to high-quality show that behavior, and hyperactivity.39–43 quality.51 children and youth with physical Although stimulant medication is disabilities who participate in physical the mainstay in addressing core Despite the physical, behavioral, activity programs improve their symptoms for children with cognitive, and psychosocial benefits locomotor performance and skills, attention-deficit/hyperactivity of physical activity for CWD, the object control, social skills, peer disorder, aerobic exercise offers a interactions, and self-confidence.29 incorporation of physical activity is safe and widely beneficial adjunct in often prioritized below other One randomized trial of an 8-month decreasing hyperactivity and weight-bearing physical activity interventions in treatment improving attention and executive planning.49 Yet, as the above program for children with cerebral function.44 Youth with intellectual palsy showed improvements in bone examples illustrate, inclusion of disability who are overweight or physical activity into treatment mineral density.32 In some CWD, obese benefit from participating in exercise interventions may even be plans allows CWD real-world and an integrative training program, enjoyable opportunities to work on able to slow disease progression. For with improved cardiorespiratory example, in 2 randomized trials of motor, communication, and social fitness, balance, muscle strength, skill goals identified in traditional assisted bicycle and upper extremity and endurance as well as lower training, functional motor therapies, such as physical, speech, BMI.45 Adolescents and adults with and occupational therapy. deterioration slowed in boys with Down syndrome who receive Duchenne muscular dystrophy.33,34 individualized progressive resistance Ambulatory children with spina bifida BARRIERS TO PARTICIPATION training over 10 weeks have can also increase their walking speed increased muscular strength and Despite the potential benefits, CWD and cardiorespiratory fitness with become more physically active.46 participate in sports, recreation, and treadmill training programs.35 Thus, physical activity less than children Bright Futures: Guidelines for Health Beyond the physiologic benefits, without disabilities, and they Supervision of Infants, Children, and regular physical activity, recreation, experience barriers to participation Adolescents, Fourth Edition, includes and sports participation are that go beyond the functional recommendations for health care associated with both psychosocial limitations associated with their providers to help CYSHCN and their well-being and quality of life of CWD disabilities (Table 1).52–57 Without 4 FROM THE AMERICAN ACADEMY OF PEDIATRICS
TABLE 1 Benefits, Barriers, and Considerations for Participation in Sports by CWD take general physical education Benefits of participation classes, and although physical Improved wellness education teachers may make Increased community integration accommodations for some, budget Improved muscle strength Improved fundamental movement skills constraints and lack of training are Enhanced psychosocial well-being cited as barriers to participation.67,68 Increased cardiorespiratory fitness Pediatricians, other professionals, and Decreased morbidity (ie, pressure ulcers, infections, overweight and obesity, etc) parents may also overestimate the risk Improved bone health of injury during physical activity, Improved motor coordination Improved attention and focus although involvement in sports has been shown to be reasonably safe for Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 Decreased maladaptive behaviors Barriers to participation CWD; one recent study found a lower False belief: no programs for this population risk of injury in CWD after controlling False belief: participation is unsafe or too risky False belief: rules of sports too hard to learn or cannot be adapted to accommodate CWD for personal and environmental Low physical literacy factors.60,69–71 Nevertheless, parents of Lack of transportation to and from activities CWD are justified in desiring high- Lack of needed supervision or expertise quality, accessible, and safe adaptive Extra cost and time commitment recreation programs, yet they report Facilitators to participation Preparticipation evaluations to maximize safety with appropriate accommodations marked variation in recreational Organized sports that are focused on fun over competition activity availability, long waiting lists Clinicians, physical education teachers, and coaches who create physical activity prescriptions for adaptive programs, absence of and recognize individual needs suitable transport to these facilities, a Adaptations such as longer rest periods, lower coach to athlete ratios, copious positive reduced number of skilled instructors feedback, and close monitoring for symptoms of fatigue or injury to run these programs, and poor Reproduced with permission from: American Academy of Pediatrics. Athletes with a disability. In: Bernhardt DT, Rob- erts WO, eds. PPE: Preparticipation Physical Evaluation. 5th ed. Itasca, IL: American Academy of Pediatrics; 2019:185 advertisement of programs in the community.60,61 Likewise, pediatricians may be unaware of adaptive addressing barriers to physical activity, by their peers64,65; this is especially recreation opportunities within the CWD often fill leisure time with true for CWD with obesity, who may community or of the family’s interest sedentary screen-based activities.18,58 experience additional weight-bias in pursuing these opportunities.72 Frequently identified barriers to stigmatization. Primary care providers participation of CWD in sports and who have longitudinal and trusting Overall, misconceptions and physical activity are the child’s relationships with CWD and their attitudinal barriers at the level of functional limitations, negative self- families can be positive role models the individual, family, and perceptions, high cost, lack of and use nonjudgmental language and community need to be addressed to accessible facilities, lack of nearby motivational interviewing to identify integrate children of all abilities into facilities or programs, and lack of short-term goals and strategies related recreational and physical activities. providers with adaptive recreation to eating and physical activity.66 With Pediatricians can help families and expertise.10,59–62 In addition, many negative experiences and lack of children balance the benefits of individuals with disabilities are still, to opportunities, support, or participation with the potential a large extent, socially segregated and encouragement, some CWD may risks, recognizing that historically, experience negative societal become disinterested or discouraged being “too safe” and assuming that stereotypes and low performance to participate. Older children and CWD “can’t do that,” has been a expectations, providing them with adolescents with disabilities may lose persistent barrier to participation. limited opportunities for participation self-confidence to participate as skill in group-based physical gaps between them and their typically FACILITATORS TO PARTICIPATION activities.57,60,63 Some CWD may be developing peers widen and sports The combined efforts of well- discouraged to participate by an become more competitive. Through informed health care providers, implicit societal bias that favors required physical education services of parents, educators, coaches, and competitiveness and winning over a child’s Individualized Education others are needed to ensure and participation for the sake of fun, Program (IEP), schools can develop promote the participation of all enjoyment, and inclusion. When CWD goals to address deficits in children in sports, recreation, and do attempt to participate in sports, fundamental movement skills to foster physical activity (Table 1). Health they are also more likely to be bullied physical literacy. However, most CWD care providers can facilitate PEDIATRICS Volume 148, number 6, December 2021 5
participation by asking about occupational therapists that create a Parents, caregivers, and peers are current levels of activity and using safe and fun recreational important facilitators of physical tools, such as a physical activity vital environment while allowing activity for CWD. Parents who sign (PAVS) in the electronic health coordination with the primary care believe in the benefits of physical record, to start the conversation provider if medical concerns activity report higher levels of about physical activity during occur.76 Specifically, health care activity in their CWD.70 In one visits.23 The PAVS consists of 2 providers and care coordinators study, CWD whose parents were screening questions that are used to within practices can partner with physically active at least 3 hours per assess how many days per week the local adaptive recreational programs week were 4.2 times as likely to be individual engages in physical that address traditional barriers to physically active compared with Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 activity that is moderate (causes the participation (time, cost, those whose parents were less child or youth to sweat a little and transportation) and share this active.80 Therefore, an important breathe harder, such as bike riding information with families. For message from pediatric health care or playground activities) to vigorous example, many city and county providers to parents of CWD is to (causes the child or youth to sweat parks and recreation departments prioritize their own physical activity and be out of breath, such as offer low-cost adaptive recreation and to include CWD in family running or swimming) and how opportunities for CWD, and some recreational activities.81 Additionally, many minutes this level of physical adaptive recreational programs offer CWD are too often left behind activity is maintained. Use of the scholarships and provide regarding organized sports PAVS has been associated with a transportation to and from participation despite the clear benefit greater likelihood of physician of participation for CWD. Parents can activities. Therapists and coaches at exercise counseling and improved advocate for and support organized specialized adaptive recreation metabolic outcomes in adults.73 sports that encourage inclusion and programs facilitate participation for Clinicians can then create “physical focus on fun instead of winning, such CWD by having lower participant to activity prescriptions” for CWD with as Special Olympics, because these coach or instructor ratios (fewer goals for participation and referrals are important influencers of sustained than 4 participants for each coach), to specific programs or resources participation by CWD.65 In addition, using positive feedback, and that are based on baseline physical peer-mediated interventions to individualizing activities to the activity, preferred activities, facilitate play skills and foster preferences of each participant.77 functional limitations that may inclusion and acceptance of CWD by require adaptation of the activity modeling behaviors can be an Lastly, providers can work with and preparticipatory planning, and effective counterbalance to the barrier local and state public health the evidence base of the physical of systematic exclusion that has (in agencies to promote physical activity regarding risks and the past) resulted in opportunities for activity to create and strengthen benefits.23 Providers can explore the bullying behaviors.82,83 recreational programs for CWD. The child and family’s beliefs and Title V Maternal and Child Health The American Heart Association has attitudes about physical activity Services Block Grant Program has a called for schools to play a central through motivational interviewing National Performance Measure on role in ensuring all students and arrive at a treatment plan physical activity, with only 25% of participate in enough physical through shared decision-making CYSHCN with more complex health (Appendix 1).27,74 Lastly, by their activity to develop healthy needs meeting the measure of being lifestyles.84 With only 24% of CWD own commitment to physical activity, health care providers can physically active at least 60 minutes engaging in 60 minutes of physical serve as role models for CWD and per day.78 At the federal level, the activity daily, schools can help a their families. For example, Centers for Disease Control and greater proportion reach this level pediatricians with self-reported Prevention funds and supports 2 of activity.85 The Centers for Disease higher levels of fitness are more national centers on disability: Control and Prevention recommends likely to discuss physical activity Special Olympics and the National that a substantial percentage of during health supervision visits.75 Center on Health, Physical Activity students’ overall physical activity and Disability. These centers should be obtained through school To facilitate participation, providers identify and expand physical activity physical education. The right of can refer CWD to specialized programs, provide training for CWD to participate in physical adaptive programs staffed by professionals, and provide data to activity and sports in school is recreational, physical, or establish best practices.79 rooted in several federal laws. The 6 FROM THE AMERICAN ACADEMY OF PEDIATRICS
IDEA mandates free, appropriate activity.91 School-based physical linked to improvement in public education in the least activity programs, such as recess or cardiovascular fitness scores and restrictive environment, and Section physical education, that are focused on BMI.93 Thus, CWD who have 504 of the Rehabilitation Act of fun and enjoyment are strongly decreased gross motor function or 1973 requires that no individual associated with daily physical activity other developmental delays may shall be excluded because of in CWD.88 lack fundamental movement skills, disability in programs that receive may have low physical literacy, and federal funds.86 Physical education PREPARTICIPATION CONSIDERATIONS are subsequently at risk for is a federally mandated component It is important that all CWD developing a low preference for of special education services, participate in activity-related physical activity during childhood including the promotion of physical and later in life.23,94 Physical Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 recreational programs while fitness, fundamental movement skills, minimizing risks of illness or injury. literacy assessments by health care and skills in individual and group Well-designed programs can target providers are essential to allow games and sports.67 However, many fundamental movement skills early identification of any deficits.95 school districts allow exemption from (throwing, catching, kicking, jumping, Physical literacy assessments for all physical education requirements for running, hopping, balance), flexibility, children begin in early childhood students with cognitive and other cardiorespiratory endurance, and and encompass surveillance and disabilities.87 Physical education muscular strength while maximizing screening for motor delay and curricula for CWD can promote enjoyment and safety. Rather than exploring the child and family’s enjoyment of movement and skill being excluded from sports knowledge, motivation, and feelings development that can be incorporated participation, all children can be related to physical activity and before, during, and after school empowered to take part with a can-do movement.23,96,97 Figure 3 provides hours.88 Pediatric providers and attitude, enjoying the dignity of taking an adaptation of the ICF framework parents can partner with the acceptable risk during participation for pediatricians to use in assessing educational team to include physical just as individuals without disabilities physical literacy and promoting activity goals in progress metrics are allowed to do. It is also important physical activity in CWD.7 For CWD within a child’s IEP to facilitate to involve parents and caregivers early who have motor delays, referrals to participation in physical activity at and often in discussions of the exercise-related specialists (physical school.86 Physical activity can be importance of participation in sports, therapist, physical medicine and accurately measured for CWD through recreation, and physical activity for rehabilitation physician, recreation subjective and objective measures.89 CWD. therapist, sports medicine physician) Adaptive physical education teachers for structured programming may can address physical activity goals by A first step toward regular physical help to maximize the child’s modifying recreational programs to activity of all children, including potential in developing fundamental accommodate the motor skills, muscle CWD, is achieving physical literacy, movement skills, which in turn may strength, and fitness of each child. which is the “the ability, confidence, foster confidence and desire to Strategies physical education teachers and desire to be physically active for participate in sports and use to accommodate CWD may life.”92 For children with typical recreation.98,99 Furthermore, young include simplified instruction, development, fundamental CWD can be given the same additional skill modeling, peer movement skills emerge in early opportunities as other children to teaching, equipment modification, and childhood after the attainment of participate in free play and recess to coordinating activities with a special gross and fine motor milestones in develop fundamental movement education teacher.68 Beyond physical infancy. Later in childhood, provided skills and to foster the notion that education, the Comprehensive School the child has opportunities to physical activity is fun.100,101 One Physical Activity Program developed engage regularly in active play and such program to include students by the Centers for Disease Control and physical activity throughout the day, with autism with typically Prevention and the Society of Health additional competences are gained developing peers during recess and Physical Educators, is a in coordination, balance, running, activities led to improvements in framework to capture all opportunities kicking, throwing, and catching.23 peer engagement.102 for school-based physical activity for The attainment of these CWD.90 School nurses can coordinate fundamental movement skills How Much Physical Activity to with pediatricians in developing and influences physical literacy, is a Recommend? implementing health care plans that strong predictor of future physical All children, including CWD, are promote safe participation in physical activity levels of children, and is encouraged to strive to follow PEDIATRICS Volume 148, number 6, December 2021 7
Health condition 625 Fitness Function Friendships • 626 • family and child's • 627 • 628 Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 • 629 630 631 632 Family factors Fun • • • decision-making • • FIGURE 3 Adaptation of the International Classification of Function as a framework of assessing physical literacy and promoting participation of CWD in sports, recreation, and physical activity.7 Adapted from World Health Organization. Towards a Common Language for Functioning, Disability and Health. Geneva, Switzerland: World Health Organization; 2002:9. guidelines established by the 2018 encouraging children and families to The concepts of self-determination Physical Activity Guidelines do whatever they can through a and shared decision-making have Advisory Committee, which gradual exploration of increases in emerged as important themes in the recommends that children and time, intensity, and duration.104 By care of CWD.27 Discussions with adolescents (6–17 years) take part asking CWD and their families about children and families may start with in at least 60 minutes of moderate usual weekly duration and intensity a query about the child’s current to vigorous physical activity daily as of physical activity, health care level of physical activity and the well as in bone and muscle providers can adapt physical activity importance the family and child strengthening activities at least 3 guidelines to accommodate for place on being physically active. days a week.103 Parents of infants neuromuscular deficits and Families of CWD may experience are encouraged to keep them active cardiorespiratory profiles associated high levels of day-to-day stress and several times a day through with specific conditions. may consider time for physical interactive floor-based play, and activity a lower priority. Using parents of preschool-aged children The Preparticipation Evaluation: behavioral techniques, such as (3–5 years) are encouraged to have Special Concerns for CWD motivational interviewing, providers their children accumulate at least 3 Families of CWD will sometimes can explore the family’s beliefs and hours of light- to moderate-intensity schedule mandatory develop achievable physical activity activity throughout the day to preparticipation physical evaluations goals. Once the wishes of the child develop movement skills.23,104–106 or recommended health supervision and family are known, conditions For CWD, some modifications may visits. In either case, these visits that may interfere with participation be required to the frequency, allow opportunities for families and or predispose the child to injury can intensity, and/or duration of providers to discuss medical and be collaboratively discussed physical activity. Goals need to be psychosocial issues that are relevant between the child, family, provider, realistic, with an emphasis on for participation in physical activity. and other treatment team members. 8 FROM THE AMERICAN ACADEMY OF PEDIATRICS
The child’s current health status and the sport or the child’s participation to headache, high blood pressure, or functional ability, demands of the prevent injury to the athlete or other bradycardia, and these symptoms sport (including level of participants.107 Children with prompt immediate removal of the competition), and whether the sport neurologic conditions who use precipitating factor and prompt can be modified with protective or wheelchairs for ambulation are at medical care.107 Children with spinal adaptive equipment to allow for higher risk of upper extremity overuse cord injuries and cerebral palsy are safer participation are important injuries, peripheral nerve entrapment also at risk for abnormal considerations. Given the (eg, carpal tunnel syndrome), and thermoregulation and exertional complexity, the preparticipation pressure sores affecting the sacrum heat illness resulting from impaired evaluation for CWD may not occur and ischial tuberosities.108 The sweating and control of peripheral Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 in the context of a single office visit preparticipation evaluation presents blood flow as well the use of certain but rather over a period of time an opportunity to screen for skin medications (such as those with with the assistance of care ulcerations and, when present, initiate anticholinergic properties).107,111 As coordination from the primary care appropriate treatment before sports is the current practice for most medical home to obtain input from participation.109,,110 Inspecting the adaptive and therapeutic sports the child’s multidisciplinary team, adaptive or medical equipment used organizations, coaches can modify which may include subspecialists by CWD participating in sport so that the activity as needed, provide such as physical medicine and braces are appropriately fitted and frequent breaks of appropriate rehabilitation or sports medicine sports wheelchairs are in proper duration, have ready access to physicians; school nurses, coaches, working order promotes optimum fluids, and use appropriate clothing and physical education teachers; and performance and injury prevention. and equipment, which can mitigate recreation, physical, and Families can be encouraged to bring this risk.107,111,112 occupational therapists. Ideally, all equipment used during physical members of the multidisciplinary activity to the preparticipation visit so Children with developmental team can periodically reassess CWD that these assessments can be disabilities also benefit from to update treatment plans, including conducted. If needed, referrals to preparticipation planning and recommendations about sport exercise-related subspecialists anticipatory guidance. For example, participation, adaptations, and any (physical therapist, physical medicine children with autism may have restrictions deemed necessary. and rehabilitation physician, apraxia and motor coordination recreation therapist, sports medicine deficits, increasing the risk for The goal of the preparticipation physician) can be made for injuries.113 This risk can be evaluation is to review the desired equipment adjustments or other managed by adaptations to the activities of the child and family and equipment concerns. activity or the equipment or with the current state of disability-specific additional neuromotor training to and co-occurring conditions to provide The preparticipation evaluation also develop kinesthetic awareness.114 an appropriate menu of activities and allows for the provision of Children with intellectual disability potential accommodations or anticipatory guidance that promotes may have lower muscle strength, precautions that may be needed. safe participation for children with balance, flexibility, and endurance Tables 2 and 3 show elements of a physical disabilities. For example, and may benefit from exercise that preparticipation history and physical athletes with spinal cord pathology is of lower intensity as well as examination that can be used for above the sixth thoracic level may preparatory conditioning, such as CWD. For example, children with develop autonomic dysreflexia, resistance training, to reduce the physical disabilities, such as cerebral which is excessive and uncontrolled risk of injury.108 Children with palsy, may have decreased flexibility sympathetic nervous system output. Down syndrome are at slight with joint contractures, muscle This condition, which can be life- increased risk of symptomatic strength imbalances, and lack of motor threatening, may be triggered by atlantoaxial instability (AAI). control, coordination, and equilibrium, bladder infections, sunburns, and Neurologic manifestations of AAI which may increase the risk of lower other stimuli or may be self-induced with cervical cord myelopathy extremity overuse injuries, strains, and by an act such as occluding a include significant neck pain, sprains. If a child with cerebral palsy bladder catheter in an attempt to radicular pain, weakness, spasticity wishes to play baseball and there are improve sport performance (also or change in tone, gait difficulties, limitations in skills (catching, known as “boosting”). Autonomic hyperreflexia, and change in bowel throwing, and using a bat), it may be dysreflexia may present with or bladder function or other signs advisable to consider ways to adapt symptoms and signs such as or symptoms of myelopathy. In the PEDIATRICS Volume 148, number 6, December 2021 9
TABLE 2 Elements of a History During Preparticipation Evaluation for CWD History Comments Is there a history of seizures? Children with uncontrolled seizures or implantable devises (eg, ventriculoperitoneal shunt, vagal nerve stimulator) may benefit from consultation with a neurologist or neurosurgeon, respectively, to assist with medical eligibility. Although there is no universal exclusion for participation in contact sports for children with epilepsy, some families may choose to avoid sports in which seizure activity would pose risk to self or others (eg, archery, riflery, weightlifting, and sports that involve heights). There are considerations related to prevention of drowning in children with epilepsy who swim.118 In addition, some antiepilepsy drugs can impair normal sweating. Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 Is there a history or concern for hearing or vision loss? Boxing and full-contact martial arts are not recommended for functionally one-eyed athletes.119 Visually asymptomatic CWD are encouraged to have a vision screening based on the Bright Futures periodicity table. Those with ocular signs or symptoms are recommended to have a complete examination by a pediatric ophthalmologist.120 Is there a history or concern for cardiopulmonary disease? Children with stage 2 hypertension are recommended to refrain from high-static sports (weightlifting, gymnastics). Children with congenital heart disease, structural heart disease, and dysrhythmias are encouraged to have consultation with a cardiologist.119 Is there history of symptomatic AAI? Children with symptomatic AAI may report or demonstrate fatigue, gait abnormalities, neck pain, limited neck range of motion, changes in coordination, spasticity, hyperreflexia, clonus, or extensor-plantar reflex. Parents can be advised that participation in contact sports, such as football, soccer, and gymnastics, places children at risk for spinal cord injury.115 Is there a history of heat stroke or heat exhaustion? Thermoregulation in children with spinal cord injuries can be impaired because of skeletal muscle paralysis (impaired shivering and reduced ability to produce heat) and a loss of autonomic nervous system control (impaired sweating and vasodilation to dissipate heat). Athletes who have a history of heat illness are more at risk to develop the condition again. Is there a history of fractures or dislocations? Ligamentous laxity and joint hypermobility are more common in some disabilities, such as Down syndrome and Ehlers-Danlos syndrome. Children with obesity, those with osteogenesis imperfecta, and athletes in wheelchairs may have reduced bone mineral density with increased fracture risk. Are there adaptive devices used during sports participation? Health care providers are encouraged to be aware of the child’s need for adaptive equipment. Athletes using wheelchairs are at increased risk for shoulder and wrist injuries and upper extremity peripheral nerve entrapment syndrome. Is there a need for bladder catheterization? Athletes with spinal cord injuries or other neurologic conditions may have neurogenic bladder and need an indwelling catheter or require intermittent catheterization. Is there a history of pressure sores or ulcers? Children who use wheelchairs are prone to pressure ulcers over the sacrum and ischial tuberosities. What medications is the child taking? Medications used for pain and bladder dysfunction can interfere with the normal sweating response; medications that alter QT intervals also may require special assessments. Is there a history of autonomic dysreflexia? Autonomic dysreflexia is acute onset of excessive, unregulated sympathetic output that can occur in children with spinal cord injuries at or above the sixth thoracic spinal cord level. This condition may occur spontaneously or may be self-induced (boosting) in an attempt to improve performance.121 Adapted from American Academy of Pediatrics. Athletes with a disability. In: Bernhardt DT, Roberts WO, eds. PPE: Preparticipation Physical Evaluation. 5th ed. Itasca, IL: American Academy of Pediatrics; 2019:182–183. absence of myelopathic signs and Children and youth with Down may place them at increased risk of symptoms during the syndrome can be encouraged to spinal cord injury.115 preparticipation evaluation, routine participate in activities they enjoy, radiographic evaluation of the although contact sports, such as As the above examples illustrate, for cervical spine is not recommended. football, soccer, and gymnastics, each child and youth with a 10 FROM THE AMERICAN ACADEMY OF PEDIATRICS
TABLE 3 Elements of a Physical Examination During Preparticipation Evaluation for CWD a. Adding a PAVS to visits can Physical Examination help start conversations about Components Items to Screen physical activity with CWD Ocular Decreased visual acuity and their families. Ocular health Strabismus Communicate the physical, Abnormalities in ocular appearance beha-vioral, cognitive, and social- Cardiovascular Cardiovascular heart disease emotional benefits of participation Hypertension Neurologic Peripheral neuropathies in sports, recreation, and physical Inadequate motor control activity to CWD and their caregivers Inadequate coordination and balance (Table 1). Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 Clonus a. Promotion of physical activity is Impaired hand-eye coordination Sensory dysfunction a Bright Futures key health AAI promotion theme to be aware Hyperreflexia of in each stage of child Ataxia development.24 Muscle weakness Health care providers can make a Spasticity Upper motor neuron and posterior column signs and symptoms difference when they agree to “take Dermatologic Abrasions the pledge” to talk to their patients Lacerations about physical activity (https://www. Blisters nchpad.org/pledge/doctalk). Pressure ulcers Rashes Encourage parents to be physically Musculoskeletal Limited neck range of motion active and encourage inclusion of AAI CWD in family recreational activities. Torticollis Recognize, identify, and address Decreased flexibility, often with contractures; decreased strength; barriers to participation at the and muscle strength imbalance Wrist and elbow extensor tendinitis in athletes using wheelchairs individual, family, community, and Rotator cuff tendinitis and impingement in athletes using societal levels to increase the wheelchairs opportunities for CWD to be Pelvic dysfunction caused by lower extremity prosthetic device physically active (Table 1). causing unequal leg lengths a. Refer CWD to local adaptive Reproduced with permission from: American Academy of Pediatrics. Athletes with a disability. In: Bernhardt DT, Rob- erts WO, eds. PPE: Preparticipation Physical Evaluation. 5th ed. Itasca, IL: American Academy of Pediatrics; 2019:185 and therapeutic recreation programs that decrease the barriers to participation. If disability, pediatricians can review titled “Athletes with Disability.” A there is limited access to local condition-specific information, supplemental history form for programs, home-based current medications, and other athletes with a disability and a programs with adapted individualized aspects of the history Special Olympics medical form are exercises and movements can to offer recommendations that available for download at https:// be recommended. Free-to- promote safe participation. Concerns www.aap.org/en-us/advocacy-and- access videos are available or questions that arise during the through the National Center policy/aap-health-initiatives/Pages/ preparticipation visit can be on Health, Physical Activity PPE.aspx or in Supplemental Fig 4.116 addressed through consultation with and Disability (https://www. a sports medicine or physical nchpad.org/Videos). RECOMMENDATIONS Pediatricians can partner with medicine and rehabilitation physician, who can provide Pediatricians can promote participation families, schools, and community additional guidance. Although a of children and adolescents with organizations in advocating for safe, comprehensive review of disabilities in sports, recreation, and affordable, accessible, and inclusive preparticipation considerations is physical activity in the following ways: recreational programs for CWD to beyond the scope of this report, reduce disparities in participation in health care providers are encouraged 1. Assess motor development, physical activity; to refer to the publication PPE: physical literacy, and physical Encourage participation by Preparticipation Physical Evaluation, activity levels at all health discu-ssing physical activity goals Fifth Edition, which has a chapter supervision visits with CWD. with CWD and their families and PEDIATRICS Volume 148, number 6, December 2021 11
partnering with interdisciplinary keep athletes safe and healthy while and benefits, particularly among team members to develop physical participating in sports and includes individuals with higher levels of activity prescriptions that can be condition-specific preparticipation disability, clinicians should not incorporated within an after-visit considerations for athletes with hesitate to promote physical activity summary within the electronic disabilities. for CWD. Well-informed decisions medical record. If a handwritten The use of a preparticipation form regarding each child’s participation paper note is preferred, a free can promote the documentation of are made through consideration of physical activity prescription pad is relevant medical issues that can be individual activity preferences, available through the Americans with shared with therapeutic recreation overall health status, motor skills, Disabilities Fund at http:// programs, schools, and coaches balance, muscle strength, bone foundationforpmr.org/old/physicians/ (Supplemental Fig 4; https://www.aap. strength, fitness level, and the Downloaded from http://publications.aap.org/pediatrics/article-pdf/148/6/e2021054664/1210931/peds_2021054664.pdf by guest on 11 February 2022 diagnostic- org/en-us/advocacy-and-policy/ availability of adaptive programs. population/rx-for-exercise- aap-health-initiatives/Pages/PPE.aspx). Child, family, and societal barriers to pediatrics-new/. Partner with children, parents, and participation continue to exist and a. Participation in recreation, educational teams to include physical need to be directly identified and sports, and physical activity activity goals and modifications in a addressed through advocacy at the has inherent risk for all. student’s IEP and advocate for school- local, state, and federal levels. Rather than exclusion from based physical activity programs for Pediatric health care providers are sports participation, CWD. urged to promote healthy, active pediatricians can encourage Be aware of and actively refer to living for CWD through physical CWD to adopt a can-do local school and community-based activity, exercise, recreation, and attitude, enjoying the dignity organizations that offer appropriate organized sport by creating specific of taking acceptable risk physical activity programs and physical activity prescriptions suited during participation just as sports for CWD. to the child’s interests and ability. The individuals without disabilities a. Local and state disability benefits are substantial not only for are allowed to do. organizations, such as family- the children who participate but also While striving to meet to-family health information for communities that welcome them. the 2018 Physical Activity Guidelines centers and Family Voices, Advisory Committee may have up-to-date lists of RESOURCES FOR HEALTH CARE recommendations for physical adaptive recreation programs PROVIDERS AND FAMILIES activity, some CWD will require (https://familyvoices.org/). Web sites of national organi- modifications to the frequency, National centers on health pro- intensity, and/or duration of physical zations, such as Special Olympics, motion for people with disabil- activity. Realistic goals can be based the National Center on Health, ities: National Center on Health, on gradual increases in baseline Physical Activity and Disability, and Physical Activity and Disability duration and intensity of physical Move United, can provide (http://www.nchpad.org) and activity. information on local activities (see Special Olympics (https://www. Perform preparticipation Resources for Health Care Providers specialolympics.org); and Families). evaluations for CWD, in collaboration Paralympics (https://www. with the child, family, pediatric Advocate at the local, state, and paralympic.org); national levels for policies that that specialists, and therapists, leading to US Association of Blind Athletes opportunities to participate in sports promote inclusion of CWD in sports, (usaba.org); recreation, and physical activity and and recreational activities with Miracle League (http://www. appropriate adaptation to minimize for surveillance systems that include themiracleleague.net); CWD to track participation and risk of injury Move United (https://www. (Tables 2 and 3). access.117 moveunited.org); a. Encourage families to bring Achilles International ada-ptive equipment used SUMMARY AND CONCLUSIONS (achillesinternational.org); during physical activity to visits Participation in free play, sports, National Wheelchair Basketball to assess need for adjustments recreational programs, and physical Association (nwba.org); or referrals. activity improves health, well-being, Easter Seals (http://www. PPE: Preparticipation Physical and quality of life for CWD and their easterseals.com/our-programs/ Evaluation, Fifth Edition, serves as a families. Although more research is camping-recreation/ resource for medical providers to needed to confirm specific outcomes recreation-and-sports.html); 12 FROM THE AMERICAN ACADEMY OF PEDIATRICS
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