Home > RNJ > 2010 > March/April > Editorial: Self-Advocacy: An Essential Skill

Editorial: Self-Advocacy: An Essential Skill
Elaine Tilka Miller, DNS RN CRRN FAHA FAAN, Editor

One disturbing media trend is increased speculation about the impact of budget cuts on health care. To make matters worse, several state governments are considering a franchise fee on hospital operating expenses. Although some hospitals may get money back depending on how many Medicaid patients they treat, the additional financial strain will likely lead to job freezes, delayed capital purchases, and fewer dollars for essential services. In addition, tighter budgets will further reduce the accessibility of care for people with disabilities who tend to have more frequent needs for coordinated long-term care. For instance, Matt, a 10-year-old, and his best friend decided to help accelerate a campfire with gasoline. As a result, Matt suffered burns on more than 40% of his body, with major burns on his chin and neck, upper trunk, arms, hands, and right leg. His friend, Jeff, died several weeks later due to complications from his burns. In the past 6 months, Matt has had more than 10 surgeries and still requires occupational and physical therapy along with other rehabilitation services. Although Matt is making steady improvement, it is evident he will require long-term coordinated interdisciplinary rehabilitation. Fundamental ingredients to his recovery include healthcare providers, family members, and patient advocates for his high-quality care.

As rehabilitation nurses, we need to be more active in advocating for ourselves as professionals (e.g., staffing ratios, scheduling, obtaining needed resources to provide quality and coordinated care), but also for patients such as Matt who need to make the most of their care experiences. Even though our economic situation appears to be inching forward in a positive direction, rehabilitation nurses must continue to provide evidence for lawmakers, consumers, and others about the crucial contribution rehabilitation care plays in enabling patients to lead productive, quality lives. As illustrated in this journal issue, rehabilitation nurses are expanding awareness and providing evidence for more skillfully targeted interventions that make the most of every dollar spent.

Besides expanding the evidence to support rehabilitation practice’s importance and payment, we must teach patients of all ages and their families how to effectively advocate for themselves and make the most of each hospital, clinic, or office visit. Being able to advocate for oneself requires rehabilitation nurses to incorporate repeated brief educational interventions to teach patients and their families how to succinctly articulate their needs and expectations to healthcare providers. Moreover, especially in settings in which patients may not have the same health professional with each visit, it is increasingly important that patients and families keep meticulous records of interventions that have worked in the past. When time equals money, patients and their families must assume proactive roles in ensuring continuity of care.

Given rehabilitation nurses’ multiple competencies and comprehensive knowledge of patients and their families, they are the professionals most likely to ensure continuity of coordinated care and employ creative strategies (e.g., memory books, care checklists, videos, Internet materials) to cultivate patients’ and family members’ capabilities to advocate for themselves. A wealth of resources exists to support our coordinated efforts. Examples include

  • The Department of Health and Human Services (DHHS) oversees the implementation and coordination of disability programs, policies, and special initiatives pertaining to health and health-related programs for more than 54 million people with disabilities in the United States (www.os.dhhs.gov).
  • The National Health Information Center (NHIC) is a health information referral service that was established in 1979 by the Office of Disease Prevention and Health Promotion Office of the Public Health and Science of the U.S. DHHS (www.health.gov/nhic/).
  • The National Mental Health Services/Knowledge Exchange Network (KEN) is the Web site of the Substance Abuse and
  • al Health Services Administration National Mental Health Information Center that includes the National Clearinghouse for Alcohol and Drug Information and the National Mental Health Information Center (www.mentalhealth.org).
  • The National Institute of Child Health and Human Development conducts and supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities (www.nichd.nih.gov).
  • The World Health Organization is the directing and coordinating authority of health within the United National System (www.who.int).

  • The Centers for Medicare and Medicaid Services (www.cms.gov).
  • The National Aging Information Center (http://aoa.gov/naic).
  • The Office of Advocate for Persons with Disabilities is a consumer-responsive, comprehensive system of access to assistive technology usable for individuals with disabilities (www.disability-online.com/Detailed/101.html).

Focusing on helping patients, families, and healthcare professionals—including ourselves—to more adeptly advocate for high-quality coordinated care remains one of our key professional responsibilities.

For those of you who have been successful in this process, we want to hear from you!