ADAPTED PHYSICAL ACTIVITY QUARTERLY, 1995,12,228-238 O 1995 Human Kinetics Publishers. Inc. Physical Education and Sport Participation of Children and Youth With Spina Bidida Myelomeningocele Fiona J. Connor-Kuntz Indiana UniversityPurdue University, Indianapolis Gail M. Dummer Michigan State University, East Lansing Michael J. Paciorek Eastern Michigan University, Ypsilanti Physical education and sport participation of 133 children and youth with myelomeningocele (MM), aged 7 to 16 years, was investigated with respect to age, level of MM, and ambulation. Results showed that 90.2%of subjects received physical education. Elementary-aged subjects were least likely to be excluded from physical education, as were full-time manual wheelchair users. Regular physical education placements were afforded to 51.7% of subjects, although individuals may have been placed according to their MM label rather than their ambulation ability. Sport participation was reported by 82.6%of subjects. Subjects with cervical MM, and those not receiving physical education, were least likely to have participated. Interestingly, children who walked without assistive devices were least likely to participate in nonschool sports. However, 9.2% of subjects, including almost 20% of the subjects with sacral MM, felt they could benefit from use of a wheelchair in the future, or from use of a wheelchair for sport. All children and youth with disabilities, including those with spina bifida myelomeningocele(MM), are entitled to receive instruction in physical education (Individuals with Disabilities Education Act [IDEA], 1991). According to the August 23,1977, Federal Register, physical education should include the development of physical and motor fitness, fundamental motor skills and patterns, and Fiona J. Connor-Kuntz is with the School of Physical Education, Indiana UniversityPurdue University Schools, 901 W. New York St., Indianapolis, IN 46202. Gail M. Dummer is with the Department of Physical Education and Exercise Science, Michigan State University, East Lansing, MI 48824. Michael J. Paciorek is with the Department of Health, Physical Education, Recreation and Dance, Eastern Michigan University, Ypsilanti, MI 48917. Spina Bifida 229 skills in aquatics, dance, and individual and group games and sport (including intramural and lifetime sport). Further, children and youth with disabilities should receive physical education in the least restrictive environment. Least restrictive environment involves education with nondisabled children to the maximum extent appropriate based upon individual needs, as discussed in the determination of the individualized education program for the child (IDEA, 1991). Additionally, sport programs may not be used as a substitute for a comprehensive physical education program for students in special education. Furthermore, access to nonschool sport facilities and programs by individuals with disabilities has been ensured by the Americans with Disabilities Act (ADA) (PL 101-336), adopted in 1990. For example, according to Title I1 of the ADA, a city may not refuse access to public park and recreation facilities and may not deny participation in a park and recreation program simply because a person has a disability (Title I1 Highlights, 1992). Title I1 also requires that park and recreation programs and services be provided in integrated settings, unless separate or different measures are necessary to ensure equal opportunity. Title 111of the ADA requires that similar access be offered in places of public accommodation (Title I11 Highlights, 1992). For example, sport facilities such as health spas, swimming pools, and bowling alleys must offer accessible facilities and equipment and must make reasonable modifications in their services to provide equal opportunities for persons with disabilities. Few investigations have examined whether children with disabilities, especially those with mobility impairments, do, in fact, take advantage of the access "guaranteed" by federal law. Also, it is not clear whether age, level of MM, and ability to ambulate play a role in the physical education and sport experiences of children with MM. Therefore, the purpose of the present study was to evaluate the physical education and sport participation of children and youth with MM as a function of their age, level of MM, walking ability, and wheelchair use. Subjects Data were collected from 98% of the children and youth attending a 7- or 10day residential summer camp designed to promote independent living skills for children with MM. n e 7-day camp was for youngsters aged 7 to 10 years, and the 10-day camp was for individuals aged 11 to adult. Campers paid a nominal fee for registration that could be waived in case of financial need. Therefore, subjects came from all levels of socioeconomicbackground ranging from children attended by a full-time private registered nurse to children whose guardians depended on public aid. Additionally, children with severe disabilities were welcome at the camp with the only exclusion being respirator-dependent children, due to insufficient medical coverage and facility limitations. The majority of the subjects were from Illinois (92.3%), with 4.9% from other states in the Midwest, 1.4% from the Northeast, and 1.4% from the central region of the United States. The subjects were from both rural and urban areas. Subjects included 61 male and 72 female children and youth with MM, aged 7 years 0 months to 16 years 11 months (Table 1). For analysis by age, Connor-Kuntz, Dummer, and Paciorek 230 subjects were grouped into an elementary age group, those 7 to 11 years; a middle school age group, those 12 to 14 years; and a high school age group, those 15 and 16 years. Data Collection Procedures Informed consent was obtained from many parentstguardians by mail prior to their child's arrival at the camp. During the on-site camp registration, informed consent was requested from the parentstguardians of the remaining children who had not returned their consent form with their camp application. As a result, consent was received for 98% of the campers to participate. Each participant individually completed a questionnaire with help from his or her parent or guardian. A researcher was available to answer questions. The survey solicited background information including level of MM along the spinal cord, height, weight, walking ability, and wheelchair use. Height and weight were not measured directly due to the difficulties involved with measuring and weighing children with physical disabilities. Parents who reported these values had recently taken their child for a check-up in which height and weight had been recorded. Information also was collected on physical education services received during the previous school year and on the individual's history of sport participation. Finally, each subject was asked to rate personal sport participation preferences and his or her perceived ability in sport relative to other children with and without disabilities. A reliability sample of participants retaking the survey was not possible because the only contact with parent and child together was during check-in when the original survey was administered. However, much of the demographic information, including heights and weights, was crosschecked with camp registration and medical forms and no discrepancies were found. Unusual responses, Table 1 Age and Gender of Subjects Age group Elementary 7 years 8 years 9 years 10 years 11 years Middle school 12 years 13 years 14 years High school 15 years 16 years Total n Male Female Spina Bifida 231 such as the report of physical education 5 days per week for 50 min a day, were validated informally through follow-up with the camper during his or her stay at the camp. Most parents asked for clarification before checking the physical education and therapy information; therefore, their responses were assumed to be valid and reliable. Results and Discussion Level of Spinal Cord Insult Of the individuals who reported their level of MM (98%), 2.3% indicated the cervical region of their spine, 13.1% thoracic, 56.1% lumbar, and 28.5% sacral. Thus, this sample appeared to be representative of the population of children with MM, since damage toward the bottom of the spine is more common (McClone, 1984). Physical Growth Characteristics Males had an average height of 1.39 m (SD = 0.19) based on a 77% response rate, an average weight of 39.2 kg (SD = 13.44) with an 89% response rate, and an average BMI of 20.28 (SD = 5.37) as an estimate of body composition, based upon a 75% response rate. The low response rate was due to the difficulty for parents of measuring and weighing a child who cannot stand independently. Therefore, the children of the parents who reported physical growth measures had recently visited their physician and had been measured. According to growth charts for children who do not have disabilities (American Medical Association, 1993), this sample of boys with MM would be considered short for their age, although their weight was average. Compared to the ideal BMI ranges established for nondisabled males (McSwegin, Pemberton, Petray, & Going, 1989), the BMI values for males with MM in this sample were at the upper end of the normal range. The mean height for females was also 1.39 m (SD = 0.14) based on a 51% response rate, average weight was 38.97 kg (SD = 16.53) based on 86% of the responses, and average BMI was 22.45 (SD = 6.13). The females with MM were close to average height and weight for their age (American Medical Association, 1993). However, their BMI values were higher than the upper limit of the range for nondisabled females of the same age (McSwegin, Pemberton, Petray, & Going, 1989). Ambulation Ability All subjects responded to items on ambulation ability. Table 2 shows the percentages of subjects who expressed each walking ability choice and the percentages of subjects with each level of MM (based on those who reported a level) who utilized each method of walking. None of the children with cervical-level MM were able to walk. Additionally, the children with thoracic-level insults had lost the ability to walk in a higher percentage of cases than those with lumbar-level damage. Further, none of the children with sacral insults had lost the ability to walk. However, 85.7% of the overall sample had been able to walk at some time 232 Connor-Kuntz, Durnrner, and Paciorek in their lives. This finding corresponded to the estimate by McClone (1984) that 80% of children with MM will be able to walk during the growing years. Among the children who were able to walk, it appeared that the higher the level of MM, the more assistive the ambulation device used. For example, a larger percentage of children with thoracic-level damage used parapodia, reciprocating gait orthoses (RGOs), and hip-knee-ankle-foot orthoses (HKAFOs) than children with lumbar and sacral insults. Similarly, only children with MM insults at the lumbar or sacral level were able to walk with ankle-foot orthoses (AFOs), with crutches only, or with no assistance. In fact, nearly 30% of the children with sacral-level insults were able to walk independently. Wheelchair use was summarized into eight categories ranging from no use of a wheelchair to use of a power wheelchair. Table 3 displays the percentages of subjects who reported using each wheelchair option, along with the percentages according to each level of MM. The subjects with cervical insults were the only persons who used power wheelchairs. Conversely, over 50% of the subjects with sacral insults did not use a wheelchair. However, some of the children with lower level MM did resort to use of a wheelchair for long distances, in school, or just in physical education or sport. Also, 9.2% of subjects felt they could benefit from the use of a wheelchair in the future, or from use of a wheelchair for sport, and these were individuals with low-level MM including almost one fifth of the subjects with sacral MM. Lightweight or sport wheelchairs were used most often among individuals who used a wheelchair. However, it was surprising that 7.7% of the subjects were still using traditional, heavy, hospital-type wheelchairs. This was unfortunate since these wheelchairs limit functional mobility and physical educationlsport participation. The expense of a lightweight wheelchair may have been a limiting factor for those who were propelling themselves in heavy wheelchairs. However, it may have been that the users of traditional, heavy wheelchairs were individuals who did not propel their own wheelchairs, so the potential benefit from use of a lighter wheelchair was less important. Table 2 Percentages of Subjects Employing Various Methods of Walking by Level of MM Insult Method of walking Have never walked Used to walk Swivel walker or parapodium Reciprocating gait orthoses Hip-knee-ankle-foot orthoses Knee-ankle-foot orthoses Ankle-foot orthoses Crutches only Walk independently Overall (n = 130) Cervical (n = 3) Thoracic (n = 17) Lumbar (n = 73) Sacral (n = 37) Spina Bifida 233 Table 3 Percentages of Subjects Using Wheelchairs by Level of MM Type of wheelchair Overall (n = 133) Cervical (n = 3) Thoracic (n = 17) Lumbar (n= 73) Sacral (n = 37) No wheelchair Any wheelchair primarily in school Wheelchair for long distances only May use a wheelchair in future or could benefit from one for sport Wheelchair for sport or physical education only Lightweight or sport wheelchair Traditional heavy wheelchair Power wheelchair Physical Education The majority of subjects (90.2%) received physical education. Of those not receiving physical education, two were in the elementary age group (2.9% of all elementary-aged children), eight were middle school-aged (21.6% of all middle schoolers), and three were in high school (20% of all high school-aged). The two elementary-aged children who were not receiving physical education reported receiving physical therapy instead, as did one of the high school-aged subjects. This suggested that some schools' administrators apparently misinterpret or ignore IDEA with respect to physical education. Four of the middle schoolers and one of the high schoolers said they were excluded for medical reasons by the school's judgment, not because of a physician's examination. Based upon conversations with the parents of the excluded children, it appeared that the schools were apprehensive about the bowel and bladder management problems associated with MM and used the medical reason as their official explanation. Two middle school-aged students and one high school-aged student claimed they simply were not offered physical education, while one middle school student played sport instead, and one did not know why she or he did not receive physical education. IDEA (1991) clearly requires that students with disabilities who are eligible for special education should receive instruction in physical education as part of the definition of special education. All of the subjects in this study had an identified disability and either were eligible for special education, of which physical education should have been part, or could be eligible for 234 Connor-Kuntz, Durnrner, and Paciorek special education just for their physical education needs (Kennedy, French, & Henderson, 1989). Of the subjects who did not receive physical education, 30.8% did not use a wheelchair, 38.5% used a wheelchair primarily in school, and the rest used some type of manual wheelchair. Therefore, they appeared to be quite ambulatory. The mobility of the excluded subjects and the justifications for exclusion supported the premise that individuals with spina bifida may not all receive the physical education to which they are entitled. The subjects who received physical education spent an average of 107.4 min per week in physical education (SD = 79.6 min), ranging from 20 to 300 min, based on a 97.5% response rate. In the elementary years (n = 60), subjects received an average of 94.2 min of physical education per week. At the middle school (n = 39), they received 111.6 min of physical education weekly, and 132.8 min at the high school (n = 18). Clearly, the older students spent more time in physical education, which has been typical in physical education programming although is probably ill-advised from a developmental perspective. For the investigation of physical education placement, we offered subjects a long list of placement options that are typical of those offered to individuals with spina bifida. Participants checked all appropriate options in the event of split placements. Additionally, participants were invited to write in other placement options if necessary. We then consolidated responses as regular, adapted, or some combination of these. Regular physical education placements identified were either with or without assistance from an aide. Adapted physical education placements included group instruction for only individuals who have physical impairments, group instruction for individuals who have various impairments, group instruction with nondisabled peers in attendance, and oneon-one instruction from a paraprofessional or a teacher. Additionally, some children had combined placements including any combination of the regular and adapted options. Overall, 5 1.7% of the subjects receiving physical education were in regular physical education placements, 12.7% were in placements with a combination of regular and adapted physical education, and 35.6% were in adapted physical education. Given that many individuals with MM have normal or near-normal cognitive ability, and that many can walk in some fashion (McClone, 1984), it was disturbing that more than a third of this sample had had no opportunity to participate in regular physical education with their nondisabled peers during the previous school year upon which reporting was based. Physical education placement was described according to ambulation method, as summarized in Table 4. Individuals who walked with the least assistance were more likely to receive regular physical education than the individuals who needed more complex assistive devices; however, it was interesting to note that 11.1% of the participants who could walk without assistance from mobility devices were exclusively in adapted physicai education. These individuals had perhaps been judged on their disability label (MM) rather than their functional ability. Similarly, even the individuals who were less able to walk may have been very proficient at ambulation using a wheelchair and probably had good use of their upper body, so they too may have been placed on the basis of their disability. Further support for this hypothesis came from the wheelchair use data, which showed that 22.6% of individuals who did not use wheelchairs on a full- Spina Bifida Table 4 Percentages of Subjects Using Each Method of Ambulation by Physical Education Setting Physical education placement Ambulation method RPE (n = 61) CPE APE (n = 15) (n = 42) Have never walked (n = 17) Used to walk (n = 13) Swivel walker or parapodium (n = 1) Reciprocating gait orthoses (n = 8) Hipknee-ankle-foot orthoses (n = 6) Knee-ankle-foot orthoses (n = 19) Ankle-foot orthoses (n = 36) Crutches only (n = 9) Walk independently (n = 9) Note. RPE = regular physical education placements; CPE = combination of regular and adapted physical education placements; APE = adapted physical education placements. manual wheelchairs, 35.7% were in regular physical education, 50.0% in adapted physical education, and 14.3% in some combination placement. The one subject who used a power wheelchair was in adapted physical education, while the majority of the children who used a wheelchair only for sport or physical education were in regular placements (75%). Sport Participation Subjects were asked whether they had participated in sport. Those who answered affirmatively were asked to identify the type of sport program. The six choices ranged from participation in school-organized sport with nondisabled peers to informal participation in sport with family and friends. Of the 132 subjects responding to the sport questions, 82.6% declared they had participated in sport, while 17.4% claimed they had not. Sport participation varied with level of spinal cord damage. Participation was reported by 33% of subjects with cervical MM, 88.2% with thoracic MM, 88.9% with lumbar MM, and 73% with sacral damage. The low percentage of participation by persons with cervical-level insults may suggest a relationship between motor ability and sport participation. However, if that were true, the greatest percentage of participation should have been observed among the individuals with sacral-level insults. Actually, those with MM insults at the lumbar and thoracic levels participated most. This is evident in Table 5, Connor-Kuntz, Dummer, and Paciorek 236 Table 5 Percentages of Subjects Participating in Sport by Level of MM Type of program sport with nondisabled peers School-organized sport with peers who have disabilities Community sport with nondisabled peers (e.g., YMCA, AYSO) Community sport with peers who have disabilities (e.g., Little League Challenger Division) Disabled sport (e.g., WSUSA) Informal participation with family and friends Overall (n = 129) Cervical (n = 3) Thoracic (n = 17) Lumbar (n = 72) Sacral (n = 37) 26.4 0.0 11.8 31.9 24.3 20.2 33.3 23.5 22.2 13.5 10.9 0.0 5.9 13.9 8.1 23.3 0.0 29.4 33.3 2.7 22.5 0.0 29.4 31.9 2.7 43.4 0.0 35.3 47.2 43.2 Note. AYSO = American Youth Soccer Organization; WSUSA = Wheelchair Sport USA. which shows the percentages of subjects who had taken part in each type of sporting experience and the percentages of subjects within each level of MM who had participated. A higher percentage of subjects with thoracic- and lumbarlevel MM participated in one or more of the five formal sport opportunities. This may occur because more formal sport opportunities exist for children with MM who use wheelchairs than for those who walk using an assistive device. Often, individuals who use wheelchairs can move around more quickly and efficiently than those who attempt to walk. Sport participation may be easier, safer, and more feasible using a wheelchair. This was supported in part by subjects who acknowledged they could benefit from use of a wheelchair for sport, when questioned about wheelchair use. These subjects included 6.8% of those with lumbar-level MM and 13.5% of those with sacral-level MM who ambulated by walking. Of those who received physical education, 86% also participated in sport, compared to only 54% participation among those who did not receive physical education. It appeared that physical education participation may increase the likelihood that children with MM would participate in some type of sport activity outside of class. Spina Bifida 237 Summary Although the data have been treated descriptively, we believe four key points have emerged: 1. Based upon this sample, there was evidence of schools substituting physical therapy, a related service, for physical education, which is a direct service. Further, some children appeared to be excluded from physical education on the basis of having MM. 2. The observation that one-third of this sample had not had the opportunity to participate in physical education with their nondisabled peers during the past school year may suggest that not all of these children with MM were receiving physical education in their least restrictive environment. 3. The lowest nonschool sport participation was observed for children with MM who walked independently. These individuals may not be sufficiently ambulatory for nondisabled sport and may benefit from use of a wheelchair for sport. 4. It was significant that sport participation outside the school setting was more likely among children who received physical education than those who did not. These four findings drive some important recommendations. First, followup investigation is needed to identify the criteria upon which physical education placement decisions are based for students with MM. Too few students had participated with their nondisabled peers during the school year investigated. Second, we must continue to educate school personnel about MM, so that exclusion of students because of bowel and bladder management concerns need not occur. The issue of sport participation by individuals with MM who are able to walk warrants further inves!igation. Again, education may be the key to encourage the use of a wheelchair as a piece of sports equipment. Finally, the finding that more of the students who had received physical education had participated in sports is encouraging support for the provision of physical education in the schools. Professionals should continue to emphasize the skills necessary for sport participation in physical education. References American Medical Association. (1993). Growth recording form. (Available from 535 N. Dearborn St., Chicago, IL 60610) Federal Register (Rules and Regulations), August 23, 1977, pp. 42480. Individuals with Disabilities Education Act (IDEA). (1991). Horsham, PA: LRP Publica- tions. Kennedy, S.O., French, R., & Henderson, H.L. (1989). The due-able process could happen to you! Physical educators, handicapped students, and the law. JOPERD, 60(8), 86-93. McSwegin, P., Pemberton, C., Petray, C., & Going, S. (1989). Physical best. The AAHPERD guide to physicalfitness education and assessment. Reston, VA: American Alliance for Health, Physical Education, Recreation and Dance. McClone, D.G. (1984). An introduction to spina bz$da. Chicago: Children's Memorial Hospital. 238 Connor-Kuntz, Dummer, and Paciorek Title II Highlights. (1992). Office of the Americans with Disabilities Act, Civil Rights Division, U.S. Department of Justice, P.0: Box 661 18, Washington, DC 200356118. Title III Highlights. (1992). Office of the Americans with Disabilities Act, Civil Rights Division, U.S. Department of Justice, P.O. Box 661 18, Washington, DC 2003561 18. Acknowledgments The administration of this survey was facilitated by funding and cooperation from the Illinois Spina Bifida Association.