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The Implementation of a Fitness Program for Children with Disabilities: A Clinical Case Report

Schreiber, Joe PT, MS, PCS; Marchetti, Greg PhD, PT; Crytzer, Theresa PT, DPT

doi: 10.1097/01.PEP.0000136007.39269.17
Case Report

Purpose: The purpose of this report is to describe a community-based fitness program developed and implemented 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.

The authors demonstrate how therapists can use the enablement framework in the current International Classification of Functioning, Disability and Health (ICF) to guide clinical reasoning related to enhancing participation in desired activities for children with disabilities. A case report is used as an example.

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

Address correspondence to: Joe Schreiber, Department of Physical Therapy, Chatham College, Woodland Road, Pittsburgh, PA 15232. Email:

Grant support: This work was supported by a grant from the Federation of Independent School Alumni, Pittsburgh, Pennsylvania.

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Children are at risk for inactivity and decreased fitness. The amount of time that youths spend in physical activity has decreased markedly over the past decades. 1 Children with disabilities are at even greater risk for decreased activity and fitness levels. Community youth sports programs, traditional physical education classes, and community fitness centers may not accommodate individuals who cannot keep up well enough to participate. 2 Adaptive physical education may be more focused on participation and skill development than on lifelong fitness education. Both children and adults with disabilities may be limited in their ability to access community exercise programs and facilities. 2 Barriers to participation in community exercise programs include inadequate transportation, inaccessible exercise equipment, and poorly trained fitness professionals and exercise instructors. 2 Children who have difficulty keeping up with their peers with no disability or accessing and utilizing community sports and recreation facilities are more likely to lead a sedentary lifestyle. 3,4 Children with physical disabilities tend to have significantly lower levels of habitual physical activity, consider themselves less fit relative to their peers, and report more limitations for physical activity participation. 3,4 Only 29% of children with physical disabilities report themselves as being active. 3 Activity levels are higher among children with less severe physical disabilities such as hearing impairment or chronic medical conditions. However, even in these populations, the percentage of active youths was reported to be only about 50%. 3 This is well below the desired health promotion targets established in Healthy People 2010 guidelines that suggest that 90% of youths should be regularly involved in physical activity. 5

Given these low levels of activity, children with disabilities are at increased risk of sedentary lifestyles that will continue throughout their lives. 3 Activity levels in adulthood are usually lower than during childhood. 6,7 Previous exercise experience is a significant determinant of adult exercise behavior. 7,8 Poor fitness, inactivity, and subsequent obesity can potentially predispose children to a number of future health problems such as hypertension, type II diabetes, cardiovascular disease, and coronary heart disease. Individuals with disabilities may be at even greater risk of these health problems. For instance, compared with their peers with no disability, children and adolescents with mental retardation typically have lower levels of muscular endurance, lower levels of cardiorespiratory fitness, and a higher incidence of obesity. 9–11 Children with a diagnosis of cerebral palsy present with decreased muscle strength and cardiovascular endurance when compared with age-matched peers. 12–15 Additionally, research indicates that the incidence of cardiovascular disease and coronary heart disease is significantly higher in adults with physical disabilities. 16–21

In addition to being at risk of cardiovascular complications, children and adults with disabilities are susceptible to long-term secondary problems. These include osteoporosis, osteoarthritis, decreased balance, strength, endurance, and flexibility, increased spasticity, depression, skin problems, and other conditions. 22–24 This increased susceptibility is often exacerbated by inactivity and decreased physical fitness. These secondary conditions can potentially have a devastating impact on independence and function. Osteoporosis, fracture, osteoarthritis, and spasticity can lead to pain and impaired motion and function. 22–24 Decreased strength, balance, and endurance can lead to increased risk of falls and injury along with increased energy costs and fatigue during activities of daily living. 22–24 All these factors may lead to an inability to live independently, poor educational and vocational attainment, difficulty with developing and maintaining social relationships, difficulty with motivation and persistence, and depression and low self-esteem. 22,23

The adverse effects of inactivity and decreased fitness may be reduced with involvement in fitness programs aimed at establishing lifelong health promotion. 2 For children with disabilities, the direct benefits of a community-based, preventive fitness program include improved participation in daily living activities, increased strength and cardiovascular fitness, improved self-esteem, and improved social competence. 22,25 The indirect benefits may include decreased pharmacological and surgical interventions, improved independence with activities of daily living, and decreased likelihood of secondary conditions. 22,25 In Healthy People 2010, the definition of health promotion for people with disabilities consists of four parts: the promotion of healthy lifestyles and a healthy environment, the prevention of health complications and further disabling conditions, the education of the person with a disability to understand and monitor his or her own health and health-care needs, and the promotion of opportunities for participation in common life activities. 5 Goals of a fitness program for people with disabilities should therefore include eliminating barriers to participation, educating caregivers regarding the benefits of exercise, increasing the activity level, reducing the impact of a sedentary lifestyle on medical and secondary conditions, providing an opportunity for leisure and enjoyment, and enhancing the quality of life. 2,26,27

Physical therapists can play an important role in the integration of fitness programs into the lives of children with disabilities. 28 Physical therapists provide direct services in both school- and community-based programs. Cardiovascular fitness and endurance activities are frequently goals for children in these programs and are therefore important components of intervention programs. Because other fitness professionals may be inexperienced in working with children with disabilities, physical therapists might also function to develop community fitness programs aimed at this population. 2 In fact, adolescents with cerebral palsy participating in a community fitness program developed and implemented in part by physical therapists demonstrated significant improvement between pre-and post-measures of strength and perception of physical appearance. Positive psychological effects were identified, indicating that many of the program participants “began to take responsibility for their own physical fitness.” 25

The purpose of this case report is to describe a community-based fitness program developed and implemented by physical therapists for children, ages eight to 13 years and open to all children, regardless of level of disability. Several outcomes are reported for one of the participants, J, an 11-year-old girl with hypotonia and mild mental retardation. This outcome information is presented in an effort to illustrate the strengths and limitations of this program and to help guide clinicians and researchers in developing and critically examining the effectiveness of similar programs in the future.

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Program Description

The “Off the Couch” (OTC) program is a community fitness program designed for children aged eight to 13 years, with a special emphasis on children with disabilities. This six-week program is provided in one-hour sessions once per week. The program is supervised by a physical therapist and a physical therapist assistant and is staffed by a number of volunteers from high schools and universities. The goal of this program is to provide an opportunity for all children to exercise and develop good health habits in an enjoyable, noncompetitive, supportive atmosphere. Educational materials are provided to both the children and their families on the importance of regular exercise, proper nutrition, and lifelong fitness. Although this is a group program, each child follows an individualized program during a segment of each session. Individualized programs are designed by the program supervisors and based on a brief screening process at the start of each session. (See Appendix A for a more detailed description of the OTC program and activities.) The children and their families are provided with a copy of the child's individualized program and are encouraged to continue to exercise at home, both during and after the six-week session. A nutritionist is available for group and individual counseling for the children and families as a component of this program.

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At the time of program participation, J was an 11-year-old girl with a diagnosis of mild mental retardation and hypotonia. J was 60 in. tall and weighed 127 lb. She was generally healthy with an unremarkable medical or birth history. J was independently ambulatory in the community and able to complete most activities of daily living independently. She participated in top soccer and an adaptive swimming program. J received twice-weekly physical therapy during this time period and attended a community elementary school in a life skills program. Physical therapy goals focused on abdominal, trunk, and lower extremity strengthening, balance, and coordination. Parental consent and child assent were obtained to use the data for this case report. The Institutional Review Board of the Washington Hospital approved this case report project.

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Outcome Measures

Program effectiveness was evaluated using a number of different outcome measures. These included the energy expenditure index (EEI), rating of perceived exertion (RPE), and maximum running velocity. These measures were chosen for a number of reasons. Each measure was relatively easy to obtain during the program sessions. In addition, these measures also aided the program supervisors in developing the individualized program for each child. The outcome measures chosen seemed likely to reflect possible changes that may occur as a result of an improved fitness level. The energy expenditure required for various daily activities may decrease over time, along with the child's perception of level of exertion.

The RPE was obtained after each activity using the Perceived Exertion Scale for Children. This scale has been shown to be a valid and reliable means of monitoring exercise intensity for children without disabilities. 29 The reliability and validity of the RPE in children with mental retardation have not been established. It is a 10-point scale with colors and facial expressions that correspond to level of exertion. This scale was explained to J during each session as she sat quietly on a mat while her resting heart rate was recorded. She appeared to have a good understanding of these instructions.

Energy expenditure was measured via the EEI. 30 The EEI assesses the extent to which walking speed affects the heart rate at self-selected walking speeds. The calculation for the EEI is as follows: EEI = (walking heart rate − resting heart rate)/walking velocity.

EEI is measured in beats per meter, with a higher number indicating greater energy expenditure. The lower the EEI is, the more energy efficient the gait pattern. 30 The EEI reflects the strong linear relationship observed between heart rate and oxygen uptake in typical children over a wide range of walking velocities. 31 This is a clinically feasible test with published baseline data that can be used comparatively. 32–34 In this program, the EEI was used as an evaluative measure to determine individual change. Resting and exercise heart rates used to calculate EEI were obtained using the Cardio Sport Excel PC Heart Rate Monitor (Sark Products, Waltham, MA).

For the running velocity measure, J was instructed to run as quickly as possible for a distance of approximately 40 m. Heart rate, RPE, and maximal velocity were recorded during each running trial.

In addition to the above outcomes, parents were asked via questionnaire (Appendix B) to identify the child's level of activity at home during a two-week time period. This included tallying the number of exercise episodes and, using a visual analog scale, rating the child's general activity level. Because an important component of the program was education for the child and family, monitoring the activity level and number of exercise sessions during and after the programs provided an indirect measure of the success of this educational component.

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Participation in the OTC Program

In J's case, data were collected at the beginning and end of an OTC six-week session. J also participated in two subsequent six-week OTC sessions. A final data collection session occurred approximately 10 months after the start of the first six-week session. At each data collection session, the parent completed the questionnaire regarding J's activity level and number of exercise episodes.

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Table 1 presents the data gathered on J. Her EEI decreased from a high of 0.96 beats per meter to 0.41 beats per meter at the end of the 36-week period. Running velocity increased slightly, and both maximum heart rate and RPE during this activity decreased. Taken together, the changes in EEI and heart rate and RPE during the maximal running velocity test seem to suggest that J was able to complete these tasks with increased efficiency and decreased energy requirements. The subjective comments from the parent in the final questionnaire also support this conclusion. J's mother offered the following comments: “Off the Couch is a wonderful program... I have noticed a big difference in J's activity level...she is much more confident... J can walk longer and faster on family walks.” According to the visual analog scale, J's mother characterized her as being “very, very active” for each of the data collection points. In addition, during the two weeks before the second data collection point (7/31/00), J's mother reported that J had exercised each day. At the final data collection point (3/16/01), the number of exercise sessions for the preceding two-week time period was six (of 14 possible).



J's cognitive ability and limited expressive language skills hindered her ability to provide feedback on her own perceptions of the OTC program. However, she did appear to enjoy the activities and interaction during each session. Her mother indicated that J was always very eager to attend OTC each week. J has subsequently continued with a regular exercise program at home, including daily walks and membership in a community health and fitness club.

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The results of this brief case report support the work of previous investigations that indicates that children and adults with cognitive and physical disabilities are willing and able to participate in an exercise program and are likely to experience some benefit from that program. 11,12,14,15,21,25,35–37 In this case, J was able to sustain a high level of activity and consistently participate in regular weekly exercise episodes over a 10-month period, per the report from mother. Although data were not collected across the entire 10 months, before data collection points two and three, J was participating in an exercise program at least three times per week. In addition, both J and her mother participated in three six-week OTC sessions over this period.

To help both J and her family, along with other OTC participants, to sustain increased levels of activity and regular exercise, an effort was made to reduce barriers to participation in both OTC and in fitness activities in general. This included scheduling the sessions once per week at a time and location that were convenient for as many participants as possible. For example, during the school year, the sessions were held on Saturday mornings. However, in the summer, a weekday morning was chosen at the suggestion of many of the parents. The program directors were capable of designing, implementing, and modifying individually designed exercise programs for children with disabilities. Parents were provided with written and verbal recommendations that encouraged sustaining the established exercise program, both during and after the six-week OTC programs. Finally, any equipment utilized was adapted to meet the needs of the participants. Although J did not require any equipment modification, the reduction in barriers and support from her mother to continue to exercise at home appear to have contributed to J's ability to sustain a fairly high level of activity, with regular weekly exercise episodes over this 10-month period.

In addition to the increased level of activity, J also demonstrated the ability to move with decreased energy requirements. During the summer, the EEI was calculated initially (days 1 and 2) on measures obtained outside. This may partly explain the EEI and RPE scores for J during the day 1 and 2 sessions as compared with day 3, when, due to inclement weather, the measurements were taken inside, over a more confined and shorter course. Nonetheless, the EEI did decrease from 0.96 beats per meter to 0.41 beats per meter. At fast walking speeds, children without a disability aged nine to 11 years typically present with an EEI score of 0.61 (30.18) beats per meter, while at comfortable speeds, the EEI score is 0.47 (30.11) beats per meter. 31 Thus J's scores would seem to indicate that initially she had increased energy expenditure relative to her age-matched peers and that her energy expenditure did improve over the course of the 10 months. Future investigations would benefit from a more regular data collection schedule. J's improvements occurred at some point between the second and third data collection session, a time period of approximately nine months. Knowledge of how and when this improvement occurred within this period would be valuable.

It is unlikely that the change in maximal running velocity is clinically significant. Although the same methodological considerations must be taken into account regarding the differences in data collection during each session, the data indicate that J was able to complete the running activity with a reduced RPE. Taken together, the reduced EEI and RPE provide support for the notion that she was able to complete gross motor activities with improved efficiency and decreased energy requirements.

In determining the overall effectiveness of the OTC program, there are a number of factors to consider in addition to the those that appear in the case of J. Enrollment in the program was open to all children regardless of level of cognitive or physical ability. The number of participants ranged between 10 and 15 children and often included children without disability (mainly siblings of children with disabilities who were participating) as well as some children with more severe cognitive and/or physical disabilities. Structuring meaningful, effective, and enjoyable activities for such a wide range of participants is very challenging. Nonetheless, subjectively, most of the children appeared to thoroughly enjoy the program, indicated by a consistently high number of return participants. In addition, preliminary data collected on some of the other participants indicate that some children also experienced improvements in activity level, number of exercise sessions tolerated, and in impairment level outcomes. For example, one of the other OTC participants was a seven-year-old child with Duchenne muscular dystrophy. Despite the progressive nature of this disorder, this child was able to maintain his maximum running velocity during the 10-month period of this case report. His mother also reported that he was able to sustain a high level of activity and number of exercise sessions during this time frame. Interestingly, this child also demonstrated a fairly substantial increase in his EEI, indicating that although he was able to sustain the functional running skill, his overall energy expenditure was increased.

An additional factor supporting the effectiveness of the OTC program is that parents were extremely supportive of the program. This was reflected in both their subjective comments and also the high number of return participants. The OTC sessions were held on Saturday mornings for six consecutive weeks during the school year. Most of the children with disabilities also received weekly outpatient therapy. Thus, despite very busy schedules, the parents were able to transport their children to and from these sessions and to participate in the program itself via interaction with the nutritionist and with the program directors. Several comments from the parent questionnaires are listed below.

“My daughter has a lot of fun with the other children and it seems that she performs better when there are other children to push her...the teen volunteers are so nice...”

“My son was very active and enjoyed interacting with the other kids...he talked a lot about the program and I feel that his energy level increased...”

“I think its great and I wish it were two or three times per week instead of one.”

“My son enjoyed having his sister in class with him. The program gives him a chance to increase his endurance and to socialize with the other kids.”

“My daughter became aware of the need to exercise on a regular basis.”

“It kept my child moving, she liked it and looked forward to it. She also seems to have more stamina.”

An additional benefit of the OTC program was the opportunity for the children to regularly interact with the program volunteers, mainly high school and college students. Children and volunteers were paired together over the course of the six weeks. Each volunteer became familiar with the child's individualized program and was able to serve as a “coach” and motivator for the child. The children and their volunteer “coaches” often developed a strong rapport.

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The preliminary data collected on J and the subjective comments and information gathered from the other children and their parents suggest that children with disabilities can benefit from a center-based, weekly exercise program. Future investigators should attempt to determine the effectiveness of similar programs. For example, although it is difficult in a clinical setting to limit an investigation to a specific age group and/or a specific diagnosis, gathering data on a specific patient population may enhance the ability of program directors to implement a more effective program tailored to the needs of a specific population. The OTC program included participants with a wide range of cognitive and physical abilities and was limited to 10 to 15 children per session; thus, the program was not targeted toward children with a specific diagnosis or disability.

Additionally, one of the important challenges for future investigations includes the development and utilization of sensitive, reliable, valid, and clinically feasible outcome measures. The outcomes used in this case report included EEI, RPE, maximum running velocity, and a brief parent questionnaire. This represents a combination of outcomes at the impairment and disability levels. The impairment level measures have established reliability and validity with some clinical populations. 29,32 However, much work remains to be done to establish reliable and valid measures of disability that represent meaningful change for the participants and their families. Additional outcomes that may be affected by this type of program include self-esteem or social competence and the level of knowledge regarding fitness and healthy lifestyles. In future investigations, it will be valuable to continue to gather this information in a more systematic fashion.

Physical therapists are uniquely positioned to influence community and education systems and to advocate for the inclusion of fitness and recreation opportunities for all children. Advocating for, developing, and implementing fitness programs that benefit children with disabilities and all children within a community or school setting and reducing barriers to participating in those programs may result in beneficial effects on the long-term health and well-being of children and families in our communities.

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The program was designed for 10 to 15 children aged eight to 13 years. The six-week program ran on Saturday mornings for one hour during the school year, and for one hour on Thursday mornings during the summer. All children received clearance from their family physician before participating. The cost of the six-week program was $55 per participant. Grant funds were used to cover the cost for families who indicated a financial need.

The children demonstrated a wide range of physical and cognitive abilities with most of the children exhibiting some level of physical disability, including children who were nonambulatory. Each child was paired with at least one volunteer who helped to guide and assist the child throughout the one-hour session. Volunteers were trained by the program supervisors before each six-week program and to the extent possible worked with the same child each week. Program supervisors screened each child before the initiation of the program and developed written programs for each session. The screening included examination of the child's cognitive level, behavioral capabilities, and gross motor skills. Each child's heart rate was monitored during the session via Cardio Sport Monitors, which could be downloaded and displayed graphically, and used to develop an individualized program for each child.

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Features of the Program

All one-hour sessions began with a group warm up followed by therapy ball activities. The warm up consisted of five to seven minutes of wide arc upper and lower extremity movements as well as standing and/or seated stretching activities. Some activities included in the warm up were arm circles, heel lifts, ankle circles, marching and jogging in place, side bends with reaching, sitting with crossed legs, and long sitting while reaching forward and to either side.

Seated therapy ball activities were done by each participant. Volunteers were paired with children who required spotting for safety or assistance with the movements. Age-appropriate music with an upbeat tempo was played to increase motivation and maintain the rhythm during exercise. The instructor sat in front of the class on a therapy ball while demonstrating and calling out each movement. Activities on the therapy ball included bouncing and marching with the lower extremities, various arm movements while bouncing, heel lifts, toe lifts, knee extensions, hip rotation, and trunk strengthening movements. This component generally lasted about 10 to 15 minutes.

After the group therapy ball activity, some children completed group step aerobics while other children performed individualize exercise routines. The physical therapist assistant led the children in step aerobics for seven to 10 minutes. After the step aerobic routine, this group proceeded to their individual programs. Volunteers were provided with note cards that listed the child's individual exercise plan along with exercise parameters. The exercises were not carried out in a specific order. Heart rates and RPE were monitored during each exercise, and children were encouraged to maintain a consistent activity level. The volunteers noted the child's response to each activity, and the PT and PTA supervisors also monitored each child and assisted as indicated with the children with more physical impairments. The information gathered by the volunteers was used to update and alter the individualized programs as needed. The individual exercise plans included strengthening and aerobic activities. The strengthening activities included exercises such as abdominal crunches, push-ups, dumbbell and ankle weight activities, step-ups, and squats and were adapted as necessary to ensure compliance and success with the activities. The aerobic portion of the program included activities such as walking, light jogging, treadmill, and the stationary bike/adaptive tricycle.

During the last 10 to 15 minutes of the program, children gathered together for a group activity such as kickball, volleyball, basketball, or parachute golf.

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Off the Couch Parent Questionnaire

  1. Please indicate on the line HOW ACTIVE your child has been in the last two weeks
  2. _____________________________________________________________________________________
  3. Completely Inactive Very, Very Active
  4. Please circle the NUMBER OF TIMES YOUR CHILD EXERCISED in the past TWO WEEKS
  5. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15
  6. Please list what you were satisfied with for “Off the Couch”
  7. Please list any suggestions to help us improve the “Off the Couch” program

case report; child; mental retardation; physical therapy/methods; physical fitness; energy metabolism; exertion; cardiovascular physiological processes

© 2004 Lippincott Williams & Wilkins, Inc.