Pushin' On: UAB Spinal Cord Injury Model System Digital Newsletter Volume 34 | Number 1 - Page 2

HEALTHY LIVING The Law and Accessible Healthcare by Phil Klebine and Graham Sisson Persons with spinal cord injury (SCI) need a lifetime of medical management. They tend to have more medical issues than most people, and most health issues are related to secondary complications of SCI. They often believe they only need a specialist in SCI to manage all of their healthcare needs. But they actually need a SCI-specialist AND Primary Care Provider (PCP). • SCI-Specialists are well trained to manage the unique medical issues of SCI, but they do not usually provide PCP services. • A PCP is trained to provide the services that everyone needs, such as treatment of common sicknesses and preventive healthcare. They watch for early signs of potential medical problems and refer patients for screening to identify any health problems and any specialized care if needed. As a person with SCI, you may encounter barriers that make it hard to meet your healthcare needs. For example, a lack of transportation is a big problem for many, especially in areas with limited public transportation. It is an ongoing problem with no easy solution. Another barrier is that a PCP needs to consider issues related to SCI when providing care, but they often lack knowledge about secondary conditions. Last year, the UAB Spinal Cord Injury Model System (UABSCIMS) launched a website for PCPs in an effort to help solve this problem by providing them information on secondary conditions that they can consider when providing care. Physical barriers also remain a problem. Some offices are not fully accessible or lack an accessible exam table. Transferring can be a problem. Specialized screening equipment is often not accessible. For example, women who use a wheelchair are often unable to get breast and cervical cancer screening because examination tables are not height-adjustable. You probably know the law requires equal access. Sadly, however, you likely also know that the “law” and the “real world” are often two different things. You know the real world, but do you know what “equal access” to healthcare means? Here is what you need to know. What is the law? Rehabilitation Act of 1973 was the first anti-discrimination, civil rights law to prohibit discrimination based upon disability. However, it was limited to only covering “any program or activity receiving Federal financial assistance.” The Americans with Disabilities Act (ADA) basically prevents any discrimination against people with disabilities. The ADA requires barriers to be eliminated all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. How does the law apply to healthcare? Generally, the law requires that medical care providers (doctors’ offices, clinics, and other health care providers) to: • provide persons with disabilities full and equal access to health care services and facilities; and • make reasonable modifications to policies, practices, and procedures when necessary to make health care services fully available to individuals Participate in UAB Research Spain Rehabilitation Center is Conducting Research Involving People with SCI and Pressure Ulcers This study is to see how well Microcyn™ works on Stage 3 and Stage 4 pressure ulcers. The information we learn from this study may lead to a better treatment in the future for people with SCI who have pressure ulcers. Personalized Online Weight and Exercise Response System (POWERS): A Weight Loss Study for Adults with SCI This study aims to determine how well a newly developed web-based health coaching program helps adults with SCI increase their physical activity and improve their diet. Criteria to Participate • Have a SCI • At least 19 years old • Have Stage 3 or Stage 4 pressure ulcers • Able to attend monthly follow-up clinic visits at Spain Rehabilitation Center for 6 months Criteria to Participate • Be at least 19 years old • Have reliable internet access • Have the ability to use your arms for exercise • Able to visit the Lakeshore Foundation at the beginning and end of the intervention Participants will get up to $110. Go to website, call 205934-3329 or email SCIresearch@uab.edu for information. Go to website, call 205-403-5510 or email SCIresearch@ uab.edu for more information. 2 uab.edu/sci