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C A S E R E P O R T

The Implementation of a Fitness


Program for Children with
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Disabilities: A Clinical Case Report


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Joe Schreiber, PT, MS, PCS, Greg Marchetti, PhD, PT, and Theresa Crytzer, PT, DPT
Department of Physical Therapy, Chatham College (J.S.), Department of Physical Therapy, Duquesne University (G.M.),
and Western Pennsylvania School for Blind Children (T.C.), Pittsburgh, Pennsylvania

Purpose: The purpose of this report is to describe a community-based fitness program developed and imple-
mented for children with disabilities. Several outcomes are reported for one of the participants, J, an 11-year-
old girl with hypotonia and mild mental retardation, to illustrate the strengths and limitations of this program
and to help guide clinicians and researchers in developing and critically assessing the effectiveness of similar
programs. Summary of Key Points: The fitness program, called “Off the Couch,” (OTC) was provided in
six-week sessions for one hour per week. Outcomes examined included the energy expenditure index (EEI),
rating of perceived exertion (RPE), maximum running velocity, and the overall daily activity level of the child
and the number of exercise sessions that the child participated in over a two-week time period. J demonstrated
a reduction in EEI and a slight improvement in maximum running velocity. Activity level remained at a
relatively high level. The program is discussed with respect to feasibility in a clinical setting, suggestions for
similar programs and areas for related research. J’s outcomes are discussed in terms of their functional
relevance. (Pediatr Phys Ther 2004;16:173–179) Key words: case report, child, mental retardation, physical
therapy/methods, physical fitness, energy metabolism, exertion, cardiovascular physiological processes

INTRODUCTION programs and facilities.2 Barriers to participation in com-


Children are at risk for inactivity and decreased fit- munity exercise programs include inadequate transporta-
ness. The amount of time that youths spend in physical tion, inaccessible exercise equipment, and poorly trained
activity has decreased markedly over the past decades.1 fitness professionals and exercise instructors.2 Children
Children with disabilities are at even greater risk for de- who have difficulty keeping up with their peers with no
creased activity and fitness levels. Community youth disability or accessing and utilizing community sports and
sports programs, traditional physical education classes, recreation facilities are more likely to lead a sedentary life-
and community fitness centers may not accommodate in- style.3,4 Children with physical disabilities tend to have
dividuals who cannot keep up well enough to participate.2 significantly lower levels of habitual physical activity, con-
Adaptive physical education may be more focused on par- sider themselves less fit relative to their peers, and report
ticipation and skill development than on lifelong fitness more limitations for physical activity participation.3,4
education. Both children and adults with disabilities may Only 29% of children with physical disabilities report
be limited in their ability to access community exercise themselves as being active.3 Activity levels are higher
among children with less severe physical disabilities
such as hearing impairment or chronic medical condi-
0898-5669/04/1603-0173 tions. However, even in these populations, the percentage of
Pediatric Physical Therapy active youths was reported to be only about 50%.3 This is well
Copyright © 2004 Lippincott Williams & Wilkins, Inc.
below the desired health promotion targets established in
Healthy People 2010 guidelines that suggest that 90% of
Address correspondence to: Joe Schreiber, Department of Physical Ther-
apy, Chatham College, Woodland Road, Pittsburgh, PA 15232. Email: youths should be regularly involved in physical activity.5
jschreiber@chatham.edu Given these low levels of activity, children with dis-
Grant support: This work was supported by a grant from the Federation
of Independent School Alumni, Pittsburgh, Pennsylvania.
abilities are at increased risk of sedentary lifestyles that will
DOI: 10.1097/01.PEP.0000136007.39269.17
continue throughout their lives.3 Activity levels in adult-
hood are usually lower than during childhood.6,7 Previous

Pediatric Physical Therapy Fitness Program for Children with Disabilities 173
exercise experience is a significant determinant of adult level, reducing the impact of a sedentary lifestyle on med-
exercise behavior.7,8 Poor fitness, inactivity, and subse- ical and secondary conditions, providing an opportunity
quent obesity can potentially predispose children to a for leisure and enjoyment, and enhancing the quality of
number of future health problems such as hypertension, life.2,26,27
type II diabetes, cardiovascular disease, and coronary heart Physical therapists can play an important role in the
disease. Individuals with disabilities may be at even greater integration of fitness programs into the lives of children
risk of these health problems. For instance, compared with with disabilities.28 Physical therapists provide direct ser-
their peers with no disability, children and adolescents vices in both school- and community-based programs.
with mental retardation typically have lower levels of mus- Cardiovascular fitness and endurance activities are fre-
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cular endurance, lower levels of cardiorespiratory fitness, quently goals for children in these programs and are there-
and a higher incidence of obesity.9 –11 Children with a diag- fore important components of intervention programs. Be-
nosis of cerebral palsy present with decreased muscle cause other fitness professionals may be inexperienced in
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strength and cardiovascular endurance when compared working with children with disabilities, physical therapists
with age-matched peers.12–15 Additionally, research indi- might also function to develop community fitness pro-
cates that the incidence of cardiovascular disease and cor- grams aimed at this population.2 In fact, adolescents with
onary heart disease is significantly higher in adults with cerebral palsy participating in a community fitness pro-
physical disabilities.16 –21 gram developed and implemented in part by physical ther-
In addition to being at risk of cardiovascular compli- apists demonstrated significant improvement between pre-
cations, children and adults with disabilities are suscepti- and post-measures of strength and perception of physical
ble to long-term secondary problems. These include osteo- appearance. Positive psychological effects were identified,
porosis, osteoarthritis, decreased balance, strength, indicating that many of the program participants “began to
endurance, and flexibility, increased spasticity, depression, take responsibility for their own physical fitness.”25
skin problems, and other conditions.22–24 This increased The purpose of this case report is to describe a com-
susceptibility is often exacerbated by inactivity and de- munity-based fitness program developed and implemented
creased physical fitness. These secondary conditions can by physical therapists for children, ages eight to 13 years
potentially have a devastating impact on independence and and open to all children, regardless of level of disability.
function. Osteoporosis, fracture, osteoarthritis, and spas- Several outcomes are reported for one of the participants, J,
ticity can lead to pain and impaired motion and func- an 11-year-old girl with hypotonia and mild mental retar-
tion.22–24 Decreased strength, balance, and endurance can dation. This outcome information is presented in an effort
lead to increased risk of falls and injury along with in- to illustrate the strengths and limitations of this program
creased energy costs and fatigue during activities of daily and to help guide clinicians and researchers in developing
living.22–24 All these factors may lead to an inability to live and critically examining the effectiveness of similar pro-
independently, poor educational and vocational attain- grams in the future.
ment, difficulty with developing and maintaining social
relationships, difficulty with motivation and persistence,
and depression and low self-esteem.22,23 Program Description
The adverse effects of inactivity and decreased fitness The “Off the Couch” (OTC) program is a community
may be reduced with involvement in fitness programs fitness program designed for children aged eight to 13
aimed at establishing lifelong health promotion.2 For chil- years, with a special emphasis on children with disabilities.
dren with disabilities, the direct benefits of a community- This six-week program is provided in one-hour sessions
based, preventive fitness program include improved partic- once per week. The program is supervised by a physical
ipation in daily living activities, increased strength and therapist and a physical therapist assistant and is staffed by
cardiovascular fitness, improved self-esteem, and im- a number of volunteers from high schools and universities.
proved social competence.22,25 The indirect benefits may The goal of this program is to provide an opportunity for all
include decreased pharmacological and surgical interven- children to exercise and develop good health habits in an
tions, improved independence with activities of daily liv- enjoyable, noncompetitive, supportive atmosphere. Edu-
ing, and decreased likelihood of secondary conditions.22,25 cational materials are provided to both the children and
In Healthy People 2010, the definition of health promotion their families on the importance of regular exercise, proper
for people with disabilities consists of four parts: the pro- nutrition, and lifelong fitness. Although this is a group
motion of healthy lifestyles and a healthy environment, the program, each child follows an individualized program
prevention of health complications and further disabling during a segment of each session. Individualized programs
conditions, the education of the person with a disability to are designed by the program supervisors and based on a
understand and monitor his or her own health and health- brief screening process at the start of each session. (See
care needs, and the promotion of opportunities for partic- Appendix A for a more detailed description of the OTC
ipation in common life activities.5 Goals of a fitness pro- program and activities.) The children and their families are
gram for people with disabilities should therefore include provided with a copy of the child’s individualized program
eliminating barriers to participation, educating caregivers and are encouraged to continue to exercise at home, both
regarding the benefits of exercise, increasing the activity during and after the six-week session. A nutritionist is

174 Schreiber et al Pediatric Physical Therapy


available for group and individual counseling for the chil- for the EEI is as follows: EEI ⫽ (walking heart rate ⫺
dren and families as a component of this program. resting heart rate)/walking velocity.
EEI is measured in beats per meter, with a higher
CASE REPORT number indicating greater energy expenditure. The lower
At the time of program participation, J was an 11-year- the EEI is, the more energy efficient the gait pattern.30 The
old girl with a diagnosis of mild mental retardation and EEI reflects the strong linear relationship observed be-
hypotonia. J was 60 in. tall and weighed 127 lb. She was tween heart rate and oxygen uptake in typical children over
generally healthy with an unremarkable medical or birth a wide range of walking velocities.31 This is a clinically
history. J was independently ambulatory in the community feasible test with published baseline data that can be used
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and able to complete most activities of daily living indepen- comparatively.32–34 In this program, the EEI was used as an
dently. She participated in top soccer and an adaptive evaluative measure to determine individual change. Rest-
swimming program. J received twice-weekly physical ther- ing and exercise heart rates used to calculate EEI were
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apy during this time period and attended a community obtained using the Cardio Sport Excel PC Heart Rate Mon-
elementary school in a life skills program. Physical therapy itor (Sark Products, Waltham, MA).
goals focused on abdominal, trunk, and lower extremity For the running velocity measure, J was instructed to
strengthening, balance, and coordination. Parental consent run as quickly as possible for a distance of approximately
and child assent were obtained to use the data for this case 40 m. Heart rate, RPE, and maximal velocity were recorded
report. The Institutional Review Board of the Washington during each running trial.
Hospital approved this case report project. In addition to the above outcomes, parents were asked
via questionnaire (Appendix B) to identify the child’s level
Outcome Measures of activity at home during a two-week time period. This
Program effectiveness was evaluated using a number included tallying the number of exercise episodes and, us-
of different outcome measures. These included the energy ing a visual analog scale, rating the child’s general activity
expenditure index (EEI), rating of perceived exertion level. Because an important component of the program was
(RPE), and maximum running velocity. These measures education for the child and family, monitoring the activity
were chosen for a number of reasons. Each measure was level and number of exercise sessions during and after the
relatively easy to obtain during the program sessions. In programs provided an indirect measure of the success of
addition, these measures also aided the program supervi- this educational component.
sors in developing the individualized program for each
child. The outcome measures chosen seemed likely to re- Participation in the OTC Program
flect possible changes that may occur as a result of an im- In J’s case, data were collected at the beginning and
proved fitness level. The energy expenditure required for end of an OTC six-week session. J also participated in two
various daily activities may decrease over time, along with subsequent six-week OTC sessions. A final data collection
the child’s perception of level of exertion. session occurred approximately 10 months after the start
The RPE was obtained after each activity using the of the first six-week session. At each data collection ses-
Perceived Exertion Scale for Children. This scale has been sion, the parent completed the questionnaire regarding J’s
shown to be a valid and reliable means of monitoring ex- activity level and number of exercise episodes.
ercise intensity for children without disabilities.29 The re-
liability and validity of the RPE in children with mental Outcomes
retardation have not been established. It is a 10-point scale Table 1 presents the data gathered on J. Her EEI de-
with colors and facial expressions that correspond to level creased from a high of 0.96 beats per meter to 0.41 beats
of exertion. This scale was explained to J during each ses- per meter at the end of the 36-week period. Running veloc-
sion as she sat quietly on a mat while her resting heart rate ity increased slightly, and both maximum heart rate and
was recorded. She appeared to have a good understanding RPE during this activity decreased. Taken together, the
of these instructions. changes in EEI and heart rate and RPE during the maximal
Energy expenditure was measured via the EEI.30 The running velocity test seem to suggest that J was able to com-
EEI assesses the extent to which walking speed affects the plete these tasks with increased efficiency and decreased en-
heart rate at self-selected walking speeds. The calculation ergy requirements. The subjective comments from the parent

TABLE 1
Outcomes at Baseline and Six Weeks, and 10 Months Post-baseline

Running Maximum Heart Rate RPE Immediately after


Date of Entry EEI Velocity (m/sec) During Running Test Running Velocity Test
6/26/00 0.874 2.3 192 8
7/31/00 0.960 2.1 182 8
3/16/01 0.41 2.4 147 4
EEI ⫽ energy expenditure index; RPE ⫽ rating of perceived exertion.

Pediatric Physical Therapy Fitness Program for Children with Disabilities 175
in the final questionnaire also support this conclusion. J’s demonstrated the ability to move with decreased energy
mother offered the following comments: “Off the Couch is a requirements. During the summer, the EEI was calculated
wonderful program. . .I have noticed a big difference in J’s initially (days 1 and 2) on measures obtained outside. This
activity level. . .she is much more confident. . .J can walk may partly explain the EEI and RPE scores for J during the
longer and faster on family walks.” According to the visual day 1 and 2 sessions as compared with day 3, when, due to
analog scale, J’s mother characterized her as being “very, very inclement weather, the measurements were taken inside,
active” for each of the data collection points. In addition, dur- over a more confined and shorter course. Nonetheless, the
ing the two weeks before the second data collection point EEI did decrease from 0.96 beats per meter to 0.41 beats
(7/31/00), J’s mother reported that J had exercised each day. per meter. At fast walking speeds, children without a dis-
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At the final data collection point (3/16/01), the number of ability aged nine to 11 years typically present with an EEI
exercise sessions for the preceding two-week time period was score of 0.61 (⫾0.18) beats per meter, while at comfortable
six (of 14 possible). speeds, the EEI score is 0.47 (⫾0.11) beats per meter.31
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J’s cognitive ability and limited expressive language Thus J’s scores would seem to indicate that initially she had
skills hindered her ability to provide feedback on her own increased energy expenditure relative to her age-matched
perceptions of the OTC program. However, she did appear peers and that her energy expenditure did improve over the
to enjoy the activities and interaction during each session. course of the 10 months. Future investigations would ben-
Her mother indicated that J was always very eager to attend efit from a more regular data collection schedule. J’s im-
OTC each week. J has subsequently continued with a reg- provements occurred at some point between the second
ular exercise program at home, including daily walks and and third data collection session, a time period of approx-
membership in a community health and fitness club. imately nine months. Knowledge of how and when this
improvement occurred within this period would be
DISCUSSION valuable.
The results of this brief case report support the work of It is unlikely that the change in maximal running ve-
previous investigations that indicates that children and adults locity is clinically significant. Although the same method-
with cognitive and physical disabilities are willing and able to ological considerations must be taken into account regard-
participate in an exercise program and are likely to experience ing the differences in data collection during each session,
some benefit from that program.11,12,14,15,21,25,35–37 In this case, J the data indicate that J was able to complete the running
was able to sustain a high level of activity and consistently activity with a reduced RPE. Taken together, the reduced
participate in regular weekly exercise episodes over a 10- EEI and RPE provide support for the notion that she was
month period, per the report from mother. Although data able to complete gross motor activities with improved effi-
were not collected across the entire 10 months, before data ciency and decreased energy requirements.
collection points two and three, J was participating in an ex- In determining the overall effectiveness of the OTC
ercise program at least three times per week. In addition, both program, there are a number of factors to consider in addi-
J and her mother participated in three six-week OTC sessions tion to the those that appear in the case of J. Enrollment in
over this period. the program was open to all children regardless of level of
To help both J and her family, along with other OTC cognitive or physical ability. The number of participants
participants, to sustain increased levels of activity and reg- ranged between 10 and 15 children and often included
ular exercise, an effort was made to reduce barriers to par- children without disability (mainly siblings of children
ticipation in both OTC and in fitness activities in general. with disabilities who were participating) as well as some
This included scheduling the sessions once per week at a children with more severe cognitive and/or physical dis-
time and location that were convenient for as many partic- abilities. Structuring meaningful, effective, and enjoyable
ipants as possible. For example, during the school year, the activities for such a wide range of participants is very chal-
sessions were held on Saturday mornings. However, in the lenging. Nonetheless, subjectively, most of the children
summer, a weekday morning was chosen at the suggestion appeared to thoroughly enjoy the program, indicated by a
of many of the parents. The program directors were capable consistently high number of return participants. In addi-
of designing, implementing, and modifying individually tion, preliminary data collected on some of the other par-
designed exercise programs for children with disabilities. ticipants indicate that some children also experienced im-
Parents were provided with written and verbal recommen- provements in activity level, number of exercise sessions
dations that encouraged sustaining the established exercise tolerated, and in impairment level outcomes. For example,
program, both during and after the six-week OTC pro- one of the other OTC participants was a seven-year-old
grams. Finally, any equipment utilized was adapted to child with Duchenne muscular dystrophy. Despite the pro-
meet the needs of the participants. Although J did not re- gressive nature of this disorder, this child was able to main-
quire any equipment modification, the reduction in barri- tain his maximum running velocity during the 10-month
ers and support from her mother to continue to exercise at period of this case report. His mother also reported that he
home appear to have contributed to J’s ability to sustain a was able to sustain a high level of activity and number of
fairly high level of activity, with regular weekly exercise exercise sessions during this time frame. Interestingly, this
episodes over this 10-month period. child also demonstrated a fairly substantial increase in his
In addition to the increased level of activity, J also EEI, indicating that although he was able to sustain the

176 Schreiber et al Pediatric Physical Therapy


functional running skill, his overall energy expenditure not targeted toward children with a specific diagnosis or
was increased. disability.
An additional factor supporting the effectiveness of Additionally, one of the important challenges for fu-
the OTC program is that parents were extremely support- ture investigations includes the development and utiliza-
ive of the program. This was reflected in both their subjec- tion of sensitive, reliable, valid, and clinically feasible out-
tive comments and also the high number of return partic- come measures. The outcomes used in this case report
ipants. The OTC sessions were held on Saturday mornings included EEI, RPE, maximum running velocity, and a brief
for six consecutive weeks during the school year. Most of parent questionnaire. This represents a combination of
the children with disabilities also received weekly outpa-
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outcomes at the impairment and disability levels. The im-


tient therapy. Thus, despite very busy schedules, the par- pairment level measures have established reliability and
ents were able to transport their children to and from these validity with some clinical populations.29,32 However,
sessions and to participate in the program itself via inter- much work remains to be done to establish reliable and
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action with the nutritionist and with the program direc- valid measures of disability that represent meaningful
tors. Several comments from the parent questionnaires are change for the participants and their families. Additional
listed below. outcomes that may be affected by this type of program
include self-esteem or social competence and the level of
“My daughter has a lot of fun with the other children and it
knowledge regarding fitness and healthy lifestyles. In fu-
seems that she performs better when there are other
ture investigations, it will be valuable to continue to gather
children to push her. . .the teen volunteers are so
nice. . .” this information in a more systematic fashion.
“My son was very active and enjoyed interacting with the Physical therapists are uniquely positioned to influ-
other kids. . .he talked a lot about the program and I ence community and education systems and to advocate
feel that his energy level increased. . .” for the inclusion of fitness and recreation opportunities for
“I think its great and I wish it were two or three times per all children. Advocating for, developing, and implement-
week instead of one.” ing fitness programs that benefit children with disabilities
“My son enjoyed having his sister in class with him. The and all children within a community or school setting and
program gives him a chance to increase his endurance reducing barriers to participating in those programs may
and to socialize with the other kids.” result in beneficial effects on the long-term health and
“My daughter became aware of the need to exercise on a well-being of children and families in our communities.
regular basis.”
“It kept my child moving, she liked it and looked forward
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27. Rimmer J. Physical fitness levels of persons with cerebral palsy. Dev ities. Some activities included in the warm up were arm cir-
Med Child Neurol. 2001;43:208 –212. cles, heel lifts, ankle circles, marching and jogging in place,
28. Teague M, Stuifbergen A, McComas J, et al. A model for action in
side bends with reaching, sitting with crossed legs, and long
health promotion: a complexity experience. Can J Rehabil. 1994;7:
257–264.
sitting while reaching forward and to either side.
29. Cassady S, Kaufman B, Kelly C, et al. Validity of a new perceived Seated therapy ball activities were done by each
exertions scale for children. Cardiopulm Phys Ther. 1998;9:3– 8. participant. Volunteers were paired with children who
30. Rose J, Gamble J, Lee J, et al. The energy expenditure index: a method required spotting for safety or assistance with the move-
to quantitate and compare walking energy expenditure for children ments. Age-appropriate music with an upbeat tempo
and adolescents. J Pediatr Orthop. 1991;11:571–578. was played to increase motivation and maintain the
31. Rose J, Gamble J, Medeiros J, et al. Energy cost of walking in normal
rhythm during exercise. The instructor sat in front of the
children and in those with cerebral palsy: comparison of heart rate
and oxygen uptake. J Pediatr Orthop. 1989;9:276 –279. class on a therapy ball while demonstrating and calling
32. Rose J, Medeiros J, Parker R. Energy cost index as an estimate of out each movement. Activities on the therapy ball in-
energy expenditure of cerebral-palsied children during assisted am- cluded bouncing and marching with the lower extremi-
bulation. Dev Med Child Neurol. 1985;27:485– 490. ties, various arm movements while bouncing, heel lifts,
33. Kramer J, MacPhail H. Relationships among measures of walking toe lifts, knee extensions, hip rotation, and trunk
efficiency, gross motor ability, and isokinetic strength in adolescents
strengthening movements. This component generally
with cerebral palsy. Pediatr Phys Ther. 1994;6:3– 8.
34. Butler P, Engelbrecht M, Major R, et al. Physiological cost index of
lasted about 10 to 15 minutes.
walking for normal children and its use as an indicator of physical After the group therapy ball activity, some children
handicap. Dev Med Child Neurol. 1984;26:607– 612. completed group step aerobics while other children per-
35. Dykens E, Rosner B, Buttergaugh G. Exercise and sports in children and formed individualize exercise routines. The physical ther-
adolescents with developmental disabilities: positive physical and psychos- apist assistant led the children in step aerobics for seven to
ocial effects. Child Adolesc Psychiatr Clin North Am. 1998;7:757–771.
10 minutes. After the step aerobic routine, this group pro-
36. Pitetti K, Tan D. Effects of a minimally supervised exercise program
for mentally retarded adults. Med Sci Sports Exerc. 1991;23:594 – 601.
ceeded to their individual programs. Volunteers were pro-
37. Damiano DL, Kelly LE, Vaughn CL. Effects of quadriceps femoris vided with note cards that listed the child’s individual ex-
muscle strengthening on crouch gait in children with spastic diplegia. ercise plan along with exercise parameters. The exercises
Phys Ther. 1995;75:658 – 671. were not carried out in a specific order. Heart rates and RPE

178 Schreiber et al Pediatric Physical Therapy


were monitored during each exercise, and children were tivities included exercises such as abdominal crunches,
encouraged to maintain a consistent activity level. The vol- push-ups, dumbbell and ankle weight activities, step-ups,
unteers noted the child’s response to each activity, and the and squats and were adapted as necessary to ensure com-
PT and PTA supervisors also monitored each child and pliance and success with the activities. The aerobic portion
assisted as indicated with the children with more physical of the program included activities such as walking, light
impairments. The information gathered by the volunteers jogging, treadmill, and the stationary bike/adaptive tricycle.
was used to update and alter the individualized programs During the last 10 to 15 minutes of the program, chil-
as needed. The individual exercise plans included dren gathered together for a group activity such as kickball,
strengthening and aerobic activities. The strengthening ac- volleyball, basketball, or parachute golf.
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APPENDIX B
WnYQp/IlQrHD3i3D0OdRyi7TvSFl4Cf3VC4/OAVpDDa8KKGKV0Ymy+78= on 08/25/2023

Off the Couch Parent Questionnaire


1. Please indicate on the line HOW ACTIVE your child has been in the last two weeks

_____________________________________________________________________________________________________

Completely Inactive Very, Very Active

2. Please circle the NUMBER OF TIMES YOUR CHILD EXERCISED in the past TWO WEEKS

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

3. Please list what you were satisfied with for “Off the Couch”

4. Please list any suggestions to help us improve the “Off the Couch” program

Pediatric Physical Therapy Fitness Program for Children with Disabilities 179

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