by Rob Ingraham and Tom Scott
SCI Professionals met for simultaneous association conferences in Las Vegas in early September.
United Spinal Association’s 2005 SCI Conferences in Las Vegas, Nevada, September 6-8, featured a wide variety of lectures, seminars, and symposia aimed at virtually every facet of research into, and treatment of, spinal cord injury and disease. With hundreds of papers and poster presentations to choose from, nearly 1,400 attendees from all across the country savored a full menu of fascinating and important topics.
The meeting celebrated the 51st Annual Conference of the American Paraplegia Society (APS), the 19th Annual Conference of the American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW), and the 22nd Annual Conference of the American Association of Spinal Cord Injury Nurses (AASCIN). Below are highlights from several of the presentations.
Kenneth Lee , MD, Chief of Spinal Cord Injury, Clement J. Zablocki VA Medical Center, Milwaukee, Wisconsin
Dr. Kenneth Lee told his colleagues of his experiences treating the injured-and becoming injured himself-in Iraq.
In his address, “Military Tour of Duty,” Dr. Kenneth Lee presented conference attendees with a powerful slide show documenting his tour of duty in Iraq as a Lieutenant Colonel with a Medical Unit of the Wisconsin National Guard. Lee described in detail many aspects of his tour, including treating Saddam Hussein, caring for injured US soldiers and Iraqi civilians, dealing with the constant danger of being attacked, and the levels of medical care available to severely injured soldiers in the battle theatre. In addition, he discussed ways in which common soldiers have been trained to perform basic medical procedures and how they are, in some cases, the first level of medical treatment an injured soldier will get.
Lee, who suffered head and leg injuries when his medical unit was attacked by a suicide car bomber while traveling on a mission to a combat support hospital in Downtown Baghdad, said he would like to return to Iraq to finish his tour. “I feel I am doing a great service and I’m truly making a difference. Even though my work at the VA is just as meaningful, I’d like to finish my tour,” he said.
Lee also offered his perspective on issues facing a majority of veterans.
“I talked with a lot of injured veterans at Walter Reed and back at home,” Lee said. “I feel the same as they do. I can deal with my pain. I can deal with my scars. I can deal with the shrapnel that’s still in me. I can deal with you, too. But at the same time, I feel neglected and disconnected. That’s a statement you’ll hear a lot from the veterans. It’s very difficult for us to come home after 18 months and connect with our families. We feel empty. Who am I? What happened to me? What happened to you? I do not know the answers, but I do know these are the questions we ask ourselves daily.”
Gary Karp, Author, Executive Editor, SCI Life, National Spinal Cord Injury Association
Author and motivational speaker Gary Karp gave the keynote address on the opening day of the American Association of Spinal Cord Injury Psychologists and Social Workers conference. Karp, a paraplegic since falling from a tree at age 18, delivered a talk on “Adjusting to the Life on Wheels,” sharing his experience of cutting through societal stereotypes and misconceptions about people with disabilities (See Orbit, January 2005).
“I’ve learned that our society really has the story wrong . . . they’re very much behind the mark on what this experience of disability is all about and how possible and common it is for people to adjust to trauma that seems overwhelming and completely unmanageable,” Karp said. “There’s a whole array of stereotypes and the ones I find most common are the extremes: It’s either a horribly, tragic, extremely terrible experience or it’s about heroism and overcoming. And you rarely hear people talk about the in- between: People just getting on with their day-to-day lives, doing what it takes to accommodate the demand of their disabilities, basically getting out there and doing what everybody else does; wanting to have a good time, wanting to do something productive and meaningful in our lives, wanting to have friends . . . And that really is what it’s about—people breaking through the prevailing stereotypes and just getting on with living their lives.”
Karp quoted a friend who, paralyzed at C-4-5 after a diving accident, explained his initial emotion as: “It was not my life that flashed before my eyes, but my future.” Karp noted that he eventually learned to see disability as “an opportunity—when people take it—to go deeper into oneself, to find out who you truly are, apart from this physical body.”
He also explained, “One of the places that stereotypes gets reinforced so much is in language. Think about the words that you hear, especially in the media, referring to somebody who uses a wheelchair. What do they say? ‘Wheelchair bound. Confined to a wheelchair. I don’t think of myself as confined to a wheelchair. I think of myself as liberated by a wheelchair. I would be confined without it.
“A newspaper in Seattle did an article about me and said that I got my degrees in architecture despite my disability,” Karp continued. “Now I know they meant it as a compliment, but what they’re really doing is revealing that negative social assumption about disability. I even have trouble with the word ‘overcome’ because I think it implies that it’s only the rare, few, incredible, phenomenal, people that succeed in life with a disability. I didn’t overcome my disability as much as I adapted to my disability.”
Andra Hanlon, PhD, RN, CNP, Loyola University of Chicago
In “Feeling Happy: The Experience of Children Living With Spina Bifida,” Andra Hanlon discussed how research findings provide new insights into the health and quality of life of children living with spina bifida, a neural tube defect, which is the most common birth defect, affecting approximately 1 in 1,000 births, in the United States. Since spina bifida can occur at any of the five levels of the spinal column, multiple body systems can be affected: neurologic, musculoskeletal, and urologic.
The study, which was funded through the American Association of Spinal Cord Injury Nurses by United Spinal Association, offered children ages 7-12 living with this condition the opportunity to share their views on what happiness means to them through personal stories and drawings, enabling health care professionals to gain knowledge on their thoughts, feelings, desires, hopes, and dreams.
“I found that research on spina bifida was primarily focused on adolescence and not school-aged or younger children,” Hanlon said. “I also found that investigators were studying self-perception behavior and self- esteem aspects of spina bifida to provide information to health care providers and parents, not to benefit the quality of life of children.”
Hanlon also addressed how research into the quality of life of children living with spina bifida can impact many aspects of their treatment and care. Through her research, Hanlon discovered that “feeling happy” is a term that children can easily associate with when discussing their quality of life. “I have seen quality of life issues drive parental decisions, medical decisions, and numerous ethical discussions,” she said.
Hanlon hopes her findings will guide future research and practice in caring for children with spina bifida.
Aida Fonseca, LCSW, Medical Foster Home Coordinator, James A. Haley VAMC, Tampa, Florida
The problem of long-term care for aging veterans is being addressed in a unique new pilot program called “Medical Foster Homes” at the Haley VAMC in Tampa, Florida.
Aida Fonseca, LCSW, Medical Foster Home Coordinator at Haley, along with Glenn Curtiss, PhD, clinical neuropsychologist and Social Work Supervisor Deborah Studer, LCSW, presented an overview and a case study of a program that provides an alternative to nursing home placement for dependent, chronically, or terminally ill veterans with limited family support and who prefer a community setting for their long-term care.
The Medical Foster Home program is similar to the well-established concept of foster home programs for children, where local families will take in a child who, for one reason or another, cannot remain with their natural parents.
The first attempt at such a program was at an Arkansas VAMC and there are currently pilot programs at Haley and a veterans hospital in Puerto Rico, Fonseca said. Under the Haley VAMC model, families open their home to an aging veteran and act as caregivers in collaboration with Haley’s Home Based Primary Care (HBPC) team which provides medical care and overall site supervision. The veteran pays the host family “out of pocket” through a formal contract negotiated between the veteran, the VAMC, and the foster family, and the monthly rate will vary depending on the financial situation of the veteran. The program provides a modest income for the host family, while giving the veteran a more congenial, homelike atmosphere compared to a nursing home or an assisted living center. Fonseca said that, in Florida, a traditional nursing home would cost about $65,000/year, while a medical foster home cost roughly $11,000 a year. Administrative costs to the VA for a medical foster home is about $7 per patient day, she said.
The plan provides a community-based living arrangement to veterans who are in need of room and board but are no longer able to live independently due to physical or mental impairments or disabilities and are in need of supervision 24 hours a day, 7 days a week for safety and personal care.
Fonseca explained that the plan maintains the veteran in a safe, therapeutic environment, provides an alternative to living alone with inadequate social support, provides longitudinal health care in a home setting, including end-of-life care, offers assisted living that is affordable to the non- service connected impaired veteran, and is a viable way of meeting the increasing demand for long-term care services.
Caregivers must be financially stable and at least 21 years of age, have some formal experience with patient care, agree to a criminal background check and three personal references, be physically able to provide the needed care and have a backup plan in the event they are incapacitated, be able to communicate with HBPC team in the event of any significant changes in the veterans normal appearance, behavior, or state of health, and ensure a pleasant homelike atmosphere within the residence.
Haley VAMC Social Work Supervisor Deborah Studer said the program to date has been a great success for both veterans and caregivers. “This program is fantastic. I really encourage everybody to . . . see what they can do to get a grant and get it going” in their local VAMCs.
Alan L. Goldberg, PsyD, JD, ABPP, Private Practice, Tucson, Arizona
Alan L. Goldberg, a practicing psychologist with a law degree, offered practical advice for health care professionals when testifying in court in an address for AASCIPSW entitled, “Everything’s Coming up Legal: Tips for Navigating in Legal Circles.” Goldberg was introduced by moderator Anthony Mariano as “a political rabble rouser, a high-stakes Scrabble player, and a devoted caregiver to an 18-year-old parakeet named Zipster.”
Explaining how questions are typically posed in court, Goldberg said, “When the attorney from the other side of the case is questioning you, typically they will ask you questions that are very closed-ended. ‘Yes’ and ‘no’ questions.” For example, he said, an attorney might say, “‘Well Doctor, isn’t it possible that such and such occurred?’ And what they want you to say is yes. What you may want to say is, ‘Well, that depends.’ They hate that. Because they’re trying to lead you, stick a ring in your nose and pull, hard. And you don’t want them to do that. You want to be sure that you are in control of what your information is being used for and how it’s being used. You know what the data are about and you want to make sure that they’re used appropriately. So don’t let them put words in your mouth. Very important.”
Goldberg described a cartoon of a lawyer questioning a witness on the stand and the lawyer is saying: “‘Dr. Thigbee, in my own words, I want you to tell me exactly what happened.’ And that’s kind of the way it works when you’re being questioned.”
Goldberg said that more open-ended questions are likely to be asked by an attorney who hired you to do an evaluation or the attorney who represents the plaintiff that you’ve treated. For questions that begin with “Can you explain . . .” Goldberg suggests that health care professionals say, “‘Yes, but let me take a moment and collect my thoughts on the matter.’ And you might want to take some notes or make a little outline for 30 seconds before you respond. And that’s perfectly okay to do. It’s very important to understand these differences in how you might be examined so that you are in better control of how information will be used. ”
Goldberg also stressed the differences in types of witnesses. “As a medical professional, as a psychologist, a social worker, as a counselor, as a physician, you can testify as a ‘fact’ witness. And I would suggest to you that, when you are subpoenaed, deposed, whatever, and you have been the treating professional that you not allow yourself to be qualified as an expert. An expert witness, by definition, can give an opinion. ‘Well Doctor, is it your opinion that Mr. Jones will get better?’ or ‘Doctor, is it your opinion that Mr. Jones has been noncompliant?’ You don’t want to have to answer those questions if you’ve been, and perhaps still are, a member of the treatment team because you blow your credibility with your client. Your client doesn’t trust you anymore. If they are in the courtroom and they hear this kind of testimony, and you’ve been led down a path by the attorneys and you’ve said things that really aren’t protecting and may actually be damning your patient, well, how do you get around that?
“One way is to be very, very careful about how you’re qualified,” Goldberg continued. “Now, here comes the nasty caveat: As an expert witness, you get paid an awful lot more than you do as a fact witness. Any lay person who observes an accident can be a fact witness and they may get five dollars for their testimony. As an expert witness, you’re probably going to get somewhere between $150 and $500 an hour on the witness stand. On the other hand, something to remember is that if you are very straightforward with the attorney and let him know that you will be providing fact information such as, ‘I treated Mr. X on this day (and list every day you treated) and the diagnosis was X and we worked on this, this, this, and this’ and if they know that they’re not going to get an opinion out of you, they’re probably less likely to, Number One, call you as a witness; Number Two, they won’t keep you on the stand for very long.
“Those are really, really important things for you to know. You also need to know that when you’re giving your deposition, the same rules apply. What you say at the deposition goes into evidence in the courtroom if the case goes to trial. Remember: How do you qualify yourself and what does it do to your relationship with a patient if you get called in?”
Rory Cooper, PhD, Department of Rehabilitation Science and Technology, University of Pittsburgh
In his speech entitled, “Carrying the Torch—Call to Continue the Progress of the Past 25 Years,” Rory Cooper addressed the revolution that has occurred in spinal cord injury (SCI) research and education and how the American Paraplegia Society (APS) must strive to continue the progress made by individuals such as the late James J. Peters, former executive director of United Spinal Association. Cooper explained that community participation and quality of life are two important factors in SCI research and education, and should be the objectives of not only the APS, but all conference participants.
“What’s important to remember is that the individual with a disability and their family define quality of life. Many of us have tried to define quality of life through surveys and so forth. You have to understand, however, that it will be defined by the individual with a disability. And their quality of life will be influenced by their goals and their outcomes and how they are met by the services we provide,” Cooper said.
In addition, Cooper discussed how the War in Iraq has affected changes implemented in the VA health care system over a 4-year period. He emphasized that therapy and medical residency programs need to put more emphasis on assistive technology training. He mentioned the lack of certified spinal cord injury physicians and the need for individuals with SCI/D to have more influence on policy makers. “I think we need to get people with SCI/D to address their funding priorities. People with cancer, women, minority groups—they have got influence over policy makers and research policy makers, for the most part we don’t.” Cooper added. “So for all of you in wheelchairs, it’s time to take control. Advocate for public policy. Become a professional. Run for elected office. And those of you with disabilities who are already professionals, it’s important for you to be role models for the next generation.”
He emphasized that therapy and medical residency programs need to put more emphasis on assistive technology training. He mentioned the lack of certified spinal cord injury physicians and the need for individuals with SCI/D to have more influence on policy makers. “I think we need to get people with SCI/D to address their funding priorities. People with cancer, women, minority health??—they have got influence over policy makers and research policy makers, for the most part we don’t.” Cooper added. “So for all of you in wheelchairs, it’s time to take control. Advocate for public policy. Become a professional. Run for elected office. And those of you with disabilities who are already professionals, it’s important for you to be role models for the next generation.”
Rob Ingraham and Tom Scott are, respectively, senior editor and editor for Marketing and Communications.
