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(Rockville, MD - June 25, 2007) Yvonne Hoffman used to be a lot of things: a suicide prevention and hot line counselor; an emergency room and hospice volunteer; a religious group president; a corporate employee; and most recently, an owner of an interior decorating business.
However, that all changed when Hoffman walked her dog six months ago. Misjudging her step, she fell and suffered a traumatic brain injury (TBI). Months later, Hoffman sometimes finds herself in a controlled panic, unable to formulate words and suffering from migraines and other serious problems.
"My treatment sessions have ended and I am so scared," she says, referring to the end of her insurance coverage of her TBI-related care. Crying tears of fear and frustration, Hoffman adds: "Many of my friends think that I look great and try to reassure me. However, they don't know what this feels like, nor do they understand what a brain injury means."
Hoffman was among several TBI patients who told their stories recently at Civilian Traumatic Brain Injury: The Other Story at the National Press Club, Washington, DC, an event sponsored by the American Speech-Language Hearing Association (ASHA; visit ASHA's Web site for complete details).
A condition where brain function is disrupted by a blow or jolt to the head, or by a penetrating injury, TBI is the leading cause of death and disability among children and young adults. It also has a much higher incidence rate than other better-known conditions. Annually, approximately 1.4 million TBIs occur in the United States according to the CDC. By comparison, in 2003 there were about 185,000 new cases of breast cancer. Additionally, the agency reports that about 40,000 persons become infected with HIV every year.
TBI is very costly, too. In 2000, brain injury related direct medical costs and indirect costs such as lost productivity totaled an estimated $60 billion in the United States.
"Our returning soldiers with TBI have been in the news lately," ASHA President Noma B. Anderson says. "They are most deserving of the attention they have received. They also deserve the best care available for their injuries." Yet, Anderson notes: "There is another story with TBI—the civilian story."
Like Hoffman, Jon Weiss has a compelling chapter in that story, too. However, Weiss' began a lot more dramatically when he was hurt in a car accident last March. Young—with much of his life still ahead of him—Weiss was comatose at first for weeks. His condition improved, but he had to face some big challenges.
"I've had to postpone many endeavors in my life," Weiss explained at Civilian Traumatic Brain Injury. "Thankfully, I have my family and friends around to provide love, support, and confidence." But Weiss indicated that several factors can make TBI recovery difficult. "There is little awareness and education about TBI, and there is also a lack of financial support on a sustained basis for TBI survivors."
Access to care can be difficult indeed. According to most polled speech-language pathologists (SLPs) who belong to ASHA and work on rehabilitation care teams, inadequate health insurance coverage hinders recovery.
"Sixty-five percent of our polled SLPs report that inadequate health insurance coverage hinders optimal recovery," ASHA's Anderson explains. She adds that many insurance companies either provide no coverage of cognitive rehabilitation services, or they offer very limited coverage of the services. Specific problems can include plans which allow too few care visits.
ASHA has been at the forefront of urging insurance companies to expand their coverage, collecting a significant amount of research evidence that clearly supports cognitive rehabilitation provided by speech-language pathologists.
Carolyn McCormack, another TBI patient who spoke at Civilian Traumatic Brain Injury, knows what it is like to be hurting, yet also be in danger of losing TBI care because of inadequate insurance coverage.
Like Weiss, McCormack, a former business owner from Montana, suffered a TBI in a car crash. The accident put an end to a lot. "I lost the person I used to be," McCormack says ruefully, thinking about all of the headaches, memory loss, and confusion she endured, a terrible mix that forced her to give up her business and then sell her home to replace lost income. After her insurance company denied her coverage for related rehabilitation services, McCormack appealed the decision—and won.
"I decided to appeal," she explains, "hoping that it would help not only me, but also other people" in the same situation.
ASHA's Anderson says insurance companies, the health care system, and the public all need to become far more informed and accepting about TBI so that it becomes much better known and understood, and treatment for optimal recovery becomes widely available.
Anderson adds that ASHA urges:
- the public to see a physician if they are experiencing any kind of problems following a TBI
- individuals to follow up on a TBI diagnosis by asking their physician to refer them to an SLP if they are having cognitive or communication problems that limit their recovery
- insurance companies to provide coverage of TBI related rehabilitation services that are conducive to optimal recovery
- individuals with TBI to demand that their insurance coverage includes TBI rehabilitation services that are conducive to optimal recovery
- the public to appeal if they are denied insurance coverage, noting the importance of good record-keeping and having someone who can help the injured by clearly explaining what has happened and assisting them with the appeal process
- family members and friends to become involved if they suspect a loved one is having difficulty recovering from a TBI
- the public to take precautions such as making sure young children ride in car seats, and wearing seat belts and safety helmets to protect themselves against brain injuries at work and play
- the federal government to invest more research dollars into finding out more about what works in treating TBI
- the public to visit the ASHA web site, www.asha.org for further information
ASHA, located in Rockville, Maryland, is the professional, scientific, and credentialing association for more than 127,000 speech-language pathologists, audiologists, and speech, language, and hearing scientists in the United States and internationally. For more information on speech, language, and hearing disorders, consumers can log on to www.asha.org or call 1-800-638-TALK.
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