Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

Research shows that persons who engage in regular physical activity have a lower risk of many chronic conditions including type 2 diabetes, stroke, and coronary heart disease, and retain greater physical independence throughout life. Unfortunately, people with disabilities who might benefit most from the effects of physical activity are often sedentary, and have poorer health status compared to the population at large (Heath & Fentem, 1997; Rimmer, 1999, 2002; U.S. Department of Health and Human Services, 2000). Prolonged physical inactivity can cause a downward health and functioning spiral, and sedentary behavior over time can make it more difficult to engage in physical activities that could promote health. It can also have a negative effect on performing self-care activities and other activities of daily living. At a societal level, this contributes to higher health care costs and a greater strain on the national health care budget (Rice & Trupin, 1996).

The National Center on Physical Activity and Disability (NCPAD) was created in 1999 as a national health promotion initiative to gather, synthesize, organize, disseminate, and produce information and resources on physical activity and disability. NCPAD’s information resources – including its Web site at www.ncpad.org – are geared to consumers, caregivers, practitioners, policymakers, and researchers, and it serves to network these constituencies to produce new information and increase linkages supporting physical activity for persons with disabilities.

What NCPAD Offers

NCPAD makes available the following resources to its constituencies:

• Consumers. Persons with disabilities are empowered to pursue the health benefits of daily physical activity by utilizing NCPAD information on how to exercise and engage in recreation and sports. For example, consumers can call or e-mail NCPAD information specialists with questions on how to exercise with a specific disability, available adaptive equipment, the location of accessible fitness programs in their areas, as well as a range of other questions. Information specialists respond with a packet of materials geared to the consumer. In addition, consumers often write pieces for the “Your Writes” area of the NCPAD Web site on the experiences of people with disabilities becoming more physically active and can also participate in the NCPAD online discussion groups.
• Practitioners. NCPAD supplies information to practitioners who work with people with disabilities to enhance the effectiveness of their health and activity programs by disseminating fact sheets and research-based articles written by practitioners on exercising with a variety of disabilities. A personal trainers’ database is currently being developed that will provide information about U.S.-based personal fitness professionals who have experience working with people with disabilities and other health conditions.Care coordinators can utilize NCPAD’s information specialists and resources to include a wellness component to services they are coordinating for their clients with disabilities. For example, care coordinators might use NCPAD’s programs database to locate a wheelchair-accessible fitness center in their area, they may consult an information specialist about adapted equipment for a specific disability, or they could request information on how someone with a chronic condition such as diabetes can exercise safely.NCPAD maintains an extensive bibliography of resources on specific topics such as adapted physical education for children, fitness programming for people with specific types of disabilities, and guidelines for ADA compliance for health clubs and fitness facilities. It also conducts outreach to specific professional groups whose members can impact their affiliated programs and populations with information on physical activity and disability.One of NCPAD’s related projects, AIMFREE (Accessibility Instruments Measuring Fitness and Recreation Environments), is the product of a three-year study funded by the Centers for Disease Control and Prevention. The AIMFREE instruments are used to measure accessibility of fitness centers, swimming pools, parks and trails. It can be used by both people with mobility limitations and by professionals, such as fitness and recreation center owners and staff.
• Policymakers. NCPAD provides information for policymakers, governmental agencies, and industry leaders developing policies, guidelines, and programs promoting physical activity for persons with disabilities. Its monthly e-mail newsletter serves as a forum to provide current information in the physical activity-disability arena, and topics include research and policy updates.
• Researchers and evaluators. NCPAD and its related projects supply assessment instruments and resources on evaluating the physical activity level of persons with disabilities and accessibility for people with disabilities to fitness and recreation programs and facilities. The PADS (Physical Activity Disability Survey) instrument, for example, is used to assess low-level physical activity among persons with physical disabilities and chronic health conditions. A complementary instrument is the Barriers to Physical Activity and Disability Survey (B-PADS), which is used to measure barriers to physical activity encountered by persons with disabilities.

NCPAD’s Web site serves as the key repository for its information, with mailed materials and a toll-free phone line also available. NCPAD plans to develop a section of its Web site that allows individuals to use the PADS to determine their current level of physical activity, develop realistic activity goals with an appropriate timeframe for achieving those goals, and monitor their progress. NCPAD is also developing a portion of its Web site for children with disabilities with information on recreation and exercise for use by parents, therapists, teachers, and recreation staff, and fun games and activities for children.

Candace’s Experience with NCPAD

Candace Bennett of Chicago is one individual with a disability who has benefitted from NCPAD resources. She relates her experience as follows:

For the past six and a half years, I have worked as a writer and editor, focusing on assistive technology devices for people with disabilities. It’s been gratifying helping others access life’s activities, but I also benefit because I have a disability. I’ve had multiple sclerosis for more than half my life. As my ability to ambulate has receded, I’ve needed to devise creative ways to accomplish tasks. I mostly use a motorized scooter, and for short trips around my house I use a walker. That means that I accomplish as much as possible while seated (i.e., shopping, cooking, and bathing). I even got married sitting down!For me, finding appropriate exercises is very difficult. Since I must stand to ease the continuous strain on my back, working out in a swimming pool is an excellent activity. I use the water’s buoyancy, plus a flotation device or two, and I can stand up easily. If I don’t make time to swim, I experience much more back pain.Recently I moved from a house to a condominium for greater access to the city. From my new location, I called an NCPAD information specialist to learn about the location of accessible pools. Then I searched NCPAD’s Web site. It provides information on adaptive equipment, programs, and how-to videos, as well as demonstration video clips. This is very reassuring as it demonstrates that I have many more options from which to choose than repetitive movements or low-impact water aerobics. NCPAD fact sheets and other materials help me to learn water yoga, martial arts, water Pilates, Yogalates, and adapted land sports. I now can be fit and have a lot of fun!

Conclusion

Though NCPAD was initially developed to be purely an information clearinghouse, it has grown into an expansive network of consumers, professionals, and researchers promoting physical activity for persons with disabilities. Its network and resources are positioned to support coordination and collaboration between professionals and organizations, as well as empowerment of persons with disabilities, encouraging healthy lifestyles and participation in community fitness, recreation, and wellness options for persons with disabilities.