This is an excerpt from Adapted Physical Activity Across the Life Span by Carol Ann Leitschuh & Marquell Johnson.
The current paradigm in disability and aging research is dichotomous, describing those aging with a disability and those aging into disability. Those aging with a disability are identified early in life at birth or some time relatively soon in early childhood (such as those with cerebral palsy); whereas those aging into disability are identified after middle age (beginning at 40 years of age) (Molton and Jensen, 2010; Molton, and Yorkston, 2017). This paradigm is a product of the evolution in defining disability over the years (Krahn et al., 2015). It is a functional disability model recognizing that impairment affects the carrying out of life’s activities (Drum, 2009). A person who has had a disability since early in life is understood to be a different group of persons than the person who later in life encounters disability and must understand themselves anew. This is considered to radically influence the type of services and support a person could need. Thus, it has potential to influence the professional involvement in kinesiology, particularly how to motivate and continue support of individuals to engage safely in adapted physical activity. This reality is expected to influence disciplines like exercise physiology, sport psychology, recreation therapy, and others. Positive experiences in physical education and adapted physical education (APE) in grade school and high school are potentially potent in contributing to positive engagement in APA in aging.
Using this aging model, researchers were eager to further explore the potential relationships within the dichotomous groups. Using the National Paralysis Survey, they applied the paradigm of aging with a disability and aging into a disability to study the self-report of an individual’s health status (Dixon-Ibarra et al., 2016). They discovered an unexpected difference in how these two reported their health status. In their survey, individuals were chosen for their paralysis functionally defined as having difficulty or being unable to move upper or lower extremities. Disabilities represented included spinal cord injury, cerebral palsy, spina bifida, stroke, traumatic brain injury, and others. Both groups were of similar ages. Those aging with disability reported better overall health, despite secondary health problems. Those aging into disability reported a less healthy life and had a higher incidence of chronic health problems. This finding begs the question, Why? The authors speculated that those aging with disability had a repertoire of resiliency strategies as defined by Resnick and colleagues (2011). Having dealt with these issues since early childhood, they were more capable of adjusting to adversity, hardship, and life stressors than those just now aging into their paralysis in older age. The researchers felt that the group aging with disability of paralysis fit the disability paradox, whereby those who had serious disabilities did not report themselves as having poor health, despite the fact that others regarded them as such (Albrecht and Devlieger, 1999). Other researchers added that “The differences in health outcomes are critical when planning for health professional training, services, medical needs, and understanding optimal aging among these two distinct populations with disabilities” Dixon-Ibarra et al., 2016, n.p).
Why the good health report from those aging with disability? What does the effect of adapting in physical activity from early ages have on aging? Just this attention and facilitation may have strengthened an early resolve that those aging with disability in the Paralysis study are successful. Adapting is a part of life. By the time the people in the Paralysis study have graduated from high school, those aging with disability could have had a maximum of 22 years’ experience with APA.
Table 14.2 depicts engagement in adapting in physical activities for those aging with and into disability (Molton and Jensen, 2010; Molton and Yorkston, 2017). Better health is traditionally associated with a physically active life for older adults, with immediate improvements in sleep, lessening anxiety, lower blood pressure; and long-term effects of reduced risk of dementia, depression, stroke, diabetes, risk for cancers, weight gain, falls, and improved bone health (CDC, 2020a). Thus, it is important to understand the differences that adults bring to their aging by virtue of when they began living with a disability. This has ramifications for understanding the total ecological context of engagement, program development, and the interdisciplinary nature of APA (Kennedy, 2021).
Table 14.2 also presents APA engagement based an individual’s status. Current definitions of health and disability are applied. Krahn and colleagues (2021) defined health as “the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment” (p. 3). They further defined disabilities as “experienced limitations in body function, activities, or participation in major life activities due to a health condition that occur in the context of one’s environment and are influenced by personal factions” (p. 1). These distinctions are important to apply to the provision of HRF activity—to the full ecological context for engagement (Kennedy, 2021).
Recalibration is used as the dynamics of health and disabilities elements are confronted and rearranged to promote an existential well-being, thus the person readjusts to create for themselves a sense of being in the here and now and feeling good. This recalibration, because it is dynamic, involves many systems and is a full ecological context detailed across time in table 14.2. The considered influences for APA engagement vary for each group until the groups merge more at older and oldest ages. No one can deny the sense of psychological weight felt by each group in their advanced ages. It is striking to note the change and loss at oldest adulthood. Krahn and colleagues (2021) have given us a dynamic perspective from which to explore this question, and others related to health and disability across aging. APA engagement can support individuals as they recalibrate again and again with an interdisciplinary thrust attempting for that engagement again and again.
Dr. Lee, a rheumatologist who places value on physical activity for his patients with severe conditions, comments on his role in facilitation of that:
For my patients with arthritis and chronic disease, I strongly believe exercise and physical activity can improve health and quality-of-life. If needed, I refer to physical therapy to assist with evaluating and formulating a home exercise program and connecting to resources in the community. Otherwise, I make recommendations and I particularly like water/pool-based exercises. There are numerous studies in the medical literature showing the benefits of exercise in patients with arthritis and chronic disease. Unfortunately, I find that it can be hard for my older patients to find transportation for community physical activity.
Dr. Lee (personal communication).
In order for individuals with disabilities to take advantage of health-related fitness opportunities, Rimmer wrote nearly 20 years ago about the need for fitness professionals to strengthen their skills in health promotion and disability, to have rehabilitation professionals embrace the concept of extending their services into community-based fitness centers, and to have Medicaid and Medicare, insurance companies, and managed care organizations be willing to pay for the membership and the consultative services of physical therapists who would work alongside fitness professionals in delivering health promotion programs to people with disabilities (1994). Today these concerns are making a positive shift. For example, classically recognized bastions of sport and fitness are offering training for those needing APA. As such, the ACSM has an extensive program to train people to work with individuals in APA who are on the autism spectrum. Many fitness centers include classes specifically geared to those needing lower impact exercises or advertise them as a Silver Sneakers class. Medicare does support access to free APA classes within clubs and community programs through programs like Silver Sneakers or Silver and Fit. Hospital community education programs offer guidance on being physically active in older ages or with specific illness like cancer, arthritis, or heart disease. Kennedy and colleagues are promoting the use of community facilities within the clinical goals of people in outpatient PT programs (2021).
There is need for interdisciplinary coordination with the medical care of those with disabilities. The individuals need to be encouraged and supported by their clinical care team to find and to engage with professionals in the community at health clubs and municipalities. As this gradually happens, professionals will be following the person in their care and their physically active life or their sedentary life.
The need for program development is apparent in reviewing table 14.2. No matter how old the adult is, finding qualified leaders and programs that are inclusive of disability are very important. The Commit to Inclusion Initiative (Kraus and Jans 2014) provides information for disability inclusion in physical activity, nutrition, and obesity programs and policies. Pertinent in this initiative’s report are these points that support program development for physical activity engagement:
- People with disabilities (and their family and other caregivers and experts with disabilities) are involved in every aspect of program development and implementation, as well as evaluation of that program.
- The program clearly states objectives of inclusion of people with disabilities.
- The program should include outreach to those with disabilities for program engagement.
- Accessibility includes physical, social, behavioral, and communication aspects.
- The program makes accommodation for participants, tailoring for their needs and supports.
- Costs for support staff, staff training, and special equipment must be budgeted.
- Programs should be affordable for those with a disability and their attendants.
- Evaluations are process oriented; collected from participants, attendants, and family; and reported as outcomes of the program using measures of disabilities.