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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.
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