The Sport Information Resource Centre
The Sport Information Resource Centre

The Adapted Physical Exercise (APEX) Research Group at the University of Windsor leverages the transformative power of sport and physical activity through inclusive, barrier-free programming for adults with intellectual and developmental disability (IDD). In collaboration with Community Living Essex County, APEX delivers volunteer-led, one-on-one fitness training at the University of Windsor’s fitness facility. The purpose of this article is to summarize our key findings and recommendations from nearly a decade of delivering APEX programs in our community. 

Sport and physical activity in the IDD community 

Adults with IDD (including autism spectrum disorder, developmental delay) tend to engage in lower levels of physical activity compared to the typically developing population, and thus experience poor health and physical fitness (Hsieh et al., 2015; Li et al., 2018). Fortunately, evidence indicates that increasing active leisure in this population can enhance their physical, social, and emotional wellbeing (Anderson et al., 2013; Peterson et al., 2008; van Schrojenstein Lantman-de Valk, 2005). Beyond benefits at the individual level, participation may also challenge prejudicial beliefs about the abilities of people with IDD, stimulating social change toward greater inclusion.  

However, there are many barriers to physical activity for these individuals, including physiological factors, lack of self-confidence, transportation issues, financial limitationslack of awareness of optionsnegative supports from caregivers and decision-makers, and the absence of clear policies for engaging in regular activity in residential and day service programs (Bodde & Seo, 2009; van Schijndel-Speet et al., 2014). Key facilitators to physical activity may include enjoyment, support from others, social contact and friendship, familiarity, and a consistent routine of daily activities (van Schijndel-Speet et al., 2014).  

Through APEX programs, we have facilitated sport and physical activity participation for more than 200 individuals with IDD. In doing so, we have started to address these barriers and capitalize on facilitators (e.g., transportation arrangements, discounted gym memberships, a fun workout environment, consistent programming routine, volunteers trained to be supportive and positive). Our participants have improved their health and wellbeing, which has translated into improvements in many aspects of their lives such as increased engagement in activities of daily living, general fitness preparation for the Special Olympics, and enhanced navigation of everyday social situations. In fact, after participation in an APEX program, one of our participants developed the skills and confidence to dine at a restaurant with her family for the first time in her life.  

APEX participant outcomes 

Participants in APEX programs are typically adults with IDD who receive services from Community Living Essex County. Student volunteers are trained and matched with these participants. APEX Group 2017_1 Volunteers lead participants through a 12-week program involving individualized exercise sessions that consist of a warm-up, cardiovascular training (e.g., stationary bike), whole-body strength training using weight machines and free weights, a sports and games component that provides an opportunity for unstructured play in a group setting, and a cool-down that includes static stretching. Sessions are 90 minutes long, and occur twice per week. In order to evaluate the efficacy of APEX programming for improving health in this population, we have collected and analyzed several fitness measures over the last decade. Data for progress tracking and research purposes were collected at the beginning, middle, and end of the program (e.g., strength, flexibility, heart rate, blood pressure). Several participants, support staff, volunteers, family members, and bystanders have also participated in research interviews to help us better understand their subjective experiences with our APEX programming. We have made many observations of participants showcasing the power of sport and physical activity for social change.  

Strength & conditioning 

In a previous APEX cohort (Carr et al., 2015, May), we observed meaningful increases in upper body strength (isometric elbow flexion), lower body strength (isometric knee extension), and flexibility (sit-and-reach test) among participants from pre- to post-program testing. Upper body strength increased by approximately 39%, lower body strength increased by approximately 13%, and flexibility increased by 55%. Resting heart rate and blood pressure did not demonstrate significant changes. Overall, it was apparent that an adapted strength and conditioning program for individuals with IDD has potential to yield practical health benefits for participants and is a worthwhile service option. 

Energy expenditure 

In another study (Tillich et al., 2018, April), data from our participants’ BodyMedia® SenseWear Armbands showed that more energy was used during unstructured sports and games and cardiovascular training than during strength training. Cardiovascular training was typically done on a stationary bike and sports and games included activities such as basketball, badminton, and Frisbee. These components of the program usually took place for 20-30 minutes, and proved to be accessible exercise options to achieve sufficient energy expenditure that may elicit health benefits. Unstructured sports and games, specifically, required minimal equipment, facilities, and expertise. Anecdotally, they were a fun and enjoyable social experience that supported free play, autonomy, and choice, which may increase physical activity adherence in this population. 

Motor skills 

Problems with movement skills, coordination, and dexterity are common in individuals with IDD. Such impairments may make it difficult to engage in activities of daily living, recreation, and employment. APEX Group 2017_3 In a previous APEX program (Azar et al., 2016), we incorporated fine motor dexterity training in a game-like atmosphere for a total of 20 minutes each session, in addition to the sports and games component that challenges gross motor skills and reaction time. Fine motor training was set up within an “obstacle course” which involved manipulating a variety of small objects such as picking up and sorting paper clips of different colours and threading a nut and bolt (e.g., run to a hula hoop and do 10 repetitions, then hop to a table with the nut and bolt apparatus). We used modified versions of the 25 Grooved Pegboard and Box and Block to measure fine and gross motor skills, and a Stick Catching Test to measure reaction time. Participants improved their fine and gross motor dexterity at retention testing compared to baseline. It is important to consider that there may have been practice effects (i.e., influences on test results when a test is taken more than once); however, we did design our study to try and limit such effects. We also noticed that participants had trouble executing the Stick Catching Test for reaction time, such that they did not react to the metre stick dropping, resulting in the stick falling through their hands to the floor. After the program, we tried using a foam cylinder as a more comfortable substitute to the metal metre stick, which participants seemed to prefer. We suggested that future research measuring reaction time among people with IDD try this approach or consider alternative means such as computerized testing (see Bested et al., in press). Overall, we concluded that policy and programs that encourage sport participation and motor skill development in IDD are worthwhile and may contribute to improved community integration and independence. 

APEX community outcomes 

Members of the community surrounding individuals with IDD are key players in participants’ physical activity experiences. This community is also an important target for social change with respect to attitudes and behaviours that are more inclusive to individuals with disability. We have conducted several interviews with bystanders, volunteers, and support workers associated with APEX programs to assess the capacity of our program for social change. 

Bystanders 

Since people with disabilities are less likely to partake in recreational activities if they perceive negative attitudes from others in the community (Choi, Johnson, & Kriewitz, 2013), we examined the impact of the APEX program on gym members (i.e., program bystanders). We found the APEX program positively influenced the attitudes of several bystanders regarding the integration of individuals with a disability in a fitness environment (McAllister et al., 2018). One participant emphasized the importance of exposure: 

“I think it would be great if more students could be exposed to it [the APEX program]… Not just people being involved in the research, but just being a bystander around it… The more people are exposed to those with disabilities, the more they’ll understand, the less likely they are to discriminate.” 

Another participant highlighted how exposure to APEX programs can serve as a source of motivation for bystanders during workouts: 

“When they [a gym bystander] would get a smile from one of your participants [with IDD] they would be in a better mood, so it was great. It was almost like a contagious thing.” 

Not only do participants benefit from exercise, but their participation is also providing a positive impact on other gym users. 

Volunteers 

APEX Participant & Volunteer

Participation in physical activity by individuals with IDD may challenge popular misconceptions about the abilities of individuals with IDD. We assessed the impact of volunteering as a personal fitness trainer for APEX programs and found the experience challenged volunteers’ pre-existing understandings of IDD. Volunteers also recognized the capacity of participants to learn new skills and complete activities that are typically set outside imaginable possibilities. For example, one volunteer stated: 

“We started on weight machines and that was cool to see that they could do that, another surprise too, that they could do free weights. They can do most things that people without autism can do.” 

We also found that volunteers felt the skills they acquired through the APEX program (e.g., patience, humility) would help foster an inclusive mindset in future career and volunteer endeavours, potentially creating a ripple effect in which reduced stigma toward IDD could shape a more inclusive community.  

Support workers 

APEX program participants were often accompanied by a personal support worker during programming. We were curious to solicit personal support workers’ perspectives of APEX programming (Carr et al., 2014, April). Support workers emphasized the importance of ensuring a consistent program structure and access to resources that are typically unavailable in the community (i.e., undergraduate student volunteers, facilities). Regarding consistency, support workers felt that physical activity would be most engaging for individuals with IDD when the order and type of activities provided is predictable and when consistent volunteers are available to provide familiarity for participants. Support workers also noted that APEX programming was successful for facilitating social interactions, building confidence, and providing unique and novel opportunities: 

“He’s definitely more social in all aspects of life now… We can definitely see that only happened since having this program… a lot of those skills were encouraged and developed [at the program]” 

Support workers perceived benefits as being derived through both participant-volunteer and participant-participant relationships. Ultimately, support workers recognized that APEX programs provided participant benefits that extended well beyond physical outcomes. 

Adapted sport policy implications 

Adapting exercise programming for individuals with IDD is a rewarding and worthwhile endeavor that is beneficial to participants, their community, and society. We strongly encourage policy to support adapted exercise programs for persons with IDD in community-based settings. These programs provide a wide range of benefits to both participants and broader community members. Participation in APEX programs bestows individuals with skills that are transferrable to social engagement and the workforce. Moreover, when community members are exposed to persons with disabilities, there tends to be a greater appreciation for their capabilities, thus resulting in greater acceptance (e.g., hiring practices) and a more inclusive society.  

APEX Group 2017_2

The APEX programs have also demonstrated the strength in community-academic partnerships and their opportunity for leveraging widespread benefits through cooperation. For a program the size and extent of ours to operate, we needed the services of support workers and administrators at Community Living Essex County, as well as cooperation from the University’s Recreation Department, particularly The Forge fitness staff and management (e.g., scheduling assistance and providing discounted memberships). From Community Living Essex County’s perspective, we were able to contribute a large number of student volunteers with education in human anatomy and exercise science. Funding allocated to similar collaborations in other locations could provide meaningful opportunities for both students and participants. 

We believe that tailoring adapted sport and physical activity will be particularly important in post-pandemic programming, especially given the difficulties this community has experienced during pandemic times, to the point of receiving national attention in major news outlets (e.g., Brown, May 9, 2020). Disruptions in routine along with a lack of programming necessitates both the rapid and safe return to sport and physical activity for individuals with IDD. 

Final note for persons with IDD 

Participating in an exercise program may improve your mental and physical health. When you exercise in a community gym, you may also have a positive impact on others around you by helping them better understand your capabilities. There are many ways to do exercise that is good for you, such as sports, lifting weights, and riding a bike. Support workers and volunteers will help start your fitness journey by helping you select safe and enjoyable activities.  

Recommended resources 

For support implementing a physical activity program for adults with IDD in your community, check out the APEX Exercise Manual for Adults with Developmental Disabilities and the accompanying exercise video catalogue.  


Acknowledgement 

The APEX Research Group is very appreciative of Community Living Essex County and our funding sources for their partnership and support in facilitating the APEX program: Ontario Ministry of Health Promotion, Southern Network of Specialized Care, Kinesiology Research Seed Grant, UWindsor 2013 Strategic Priorities Fund, Developmental Disabilities Division Schulich School of Medicine and Dentistry, the Communities in Action Fund – Local Poverty Reduction Fund, Ontario Trillium Foundation Grow Grant, and Windsor Lancers Athletics and Recreation Department. The APEX Research Group is currently pursuing additional sources of funding to continue programming. Most importantly, we would like to thank participants, support staff, and families for their dedication and efforts. 


About the Author(s)

Jordan Deneau is a medical student at the University of Toronto, a research associate in the Department of Kinesiology at the University of Windsor, and a former fitness trainer with the APEX Program. His areas of research interest relate to healthy aging, physical activity promotion, and sports medicine.

Kelly Carr is a PhD candidate in the Department of Kinesiology at the University of Windsor. Her research interests focus on developing inclusive communities by showcasing the strengths of people with intellectual and developmental disabilities.

Chad Sutherland is the Director of Operations for the Centre for Human Performance & Health at the University of Windsor. His research interests are in the area of sport and exercise biomechanics, and exercise prescription.  Chad also volunteers with Community Living Essex County and currently holds the 2nd Vice President position on their board of directors.

Nadia Azar is an Associate Professor of Biomechanics & Ergonomics in the Department of Kinesiology at the University of Windsor. Her research interest is in performing arts medicine; specifically, her current work examines the physical demands of playing the drums from both occupational and athletic perspectives.

Sean Horton is a Professor of Lifespan Development in the Department of Kinesiology at the University of Windsor. His research interests lie primarily in the area of skill acquisition and expert performance, both in young people and as individuals age.

References

Anderson L. L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 385-398. 

Azar, N. R.Mckeen, P., Carr, K., Sutherland, C. A., & Horton, S. (2016). Impact of motor skills training in adults with autism spectrum disorder and an intellectual disability. Journal on Developmental Disabilities, 22(1), 28-38. 

Bested, S., Carr, K., Sutherland, C. A., Horton, S., & Azar, N. R. (in press). Improving motor control in adults with autism spectrum disorder and an intellectual disability: Preliminary results from an adapted physical exercise intervention. Journal on Developmental Disabilities. 

Bodde A. E., & Seo, D. C. (2009). A review of social and environmental barriers to physical activity for adults with intellectual disabilities. Disability and Health Journal, 2(2)57-66.  

Brown, I. (2020, May 9). Two metres and a world apart: Life in lockdown for me and my disabled son. The Globe and Mail. https://www.theglobeandmail.com/canada/article-two-metres-and-a-world-apart-life-in-lockdown-for-me-and-my-disabled/

Carr, K., Azar, NR., Horton, S., & Sutherland, Chad, C. A. (2015, May). Increasing strength and flexibility of adults diagnosed with autism spectrum disorder and an intellectual disability through a strength and conditioning program, International Society for Autism Research Conference, Salt Lake City, Utah, USA.  

Carr, K., McKeen, P., Azar, N. R., Sutherland, C. A., & Horton, S. (2014, April). Personal support workers’ perceptions of a 12-week adapted physical exercise program designed for adults with autism spectrum disorder and an intellectual disability. Ontario Association on Developmental Disabilities Conference, Research Special Interest Group, Kingston, ON, Canada 

Choi, H. S., Johnson, B., & Kriewitz, K. (2013). Benefits of inclusion and segregation for individuals with disabilities in leisure. International Journal on Disability and Human Development, 12, 15–23. 

Hsieh, K., Heller, T., Bershadsky, J., & Taub, S. (2015). Impact of adulthood stage and social-environmental context on body mass index and physical activity of individuals with intellectual disability. Intellectual and Developmental Disabilities, 53(2), 100-113.  

Li, H., Fujiura, G., Magana, S., & Parish, S. (2018). Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities. Research in Developmental Disabilities, 75, 1-10.  

McAllister, R. J., Carr., K., Sutherland, C. A., Azar, N., & Horton, S. (2018). Bystander perceptions of an exercise program for adults with autism spectrum disorder and an intellectual disability within a university setting. Journal on Developmental Disabilities, 23(2), 50-54. 

Peterson, J. J., Lowe, B. J., Peterson, N, A., Nothwehr, K. F., Janz, F. K., & Lobas, G. J. (2008). Paths to leisure physical activity among adults with intellectual disabilities: self-efficacy and social support. American Journal of Health Promotion, 23(1), 35-42. 

Tillich, L., Sutherland, C. A., Azar, N. R., Horton, S., & Carr, K. (2018, April). Energy expenditure of adults with autism spectrum disorder and an intellectual disability during an adapted physical exercise program. Ontario Association on Developmental Disabilities Conference, Research Special Interest Group, Kingston, ON, Canada 

van Schijndel-Speet, M., EvenhuisHM., van Wijck, R., van Empelen, P., & EchteldM.A. (2014). Facilitators and barriers to physical activity as perceived by older adults with intellectual disability. Intellectual and Developmental Disabilities, 52(3), 175-186. 

van Schrojenstein Lantman-de Valk, H, M. (2005). Health in people with intellectual disabilities: Current knowledge and gaps in knowledge. Journal of Applied Research in Intellectual Disabilities, 18(4), 325-333.