Chairman Mitchell, Members of the Subcommittee, thank you for the opportunity to speak to you today regarding our experiences following my husband’s injuries in Iraq. My name is Sarah Wade. I am the wife of SGT Edward Wade, or Ted as he prefers to be called.
My husband joined the Army’s 82nd Airborne Division during the summer of 2000, and following the attacks of September 11, he was called on to serve first in Afghanistan and later Iraq. On February 14, 2004, his humvee was hit by an Improvised Explosive Device on a mission in Mahmudiyah. He sustained a very severe traumatic brain injury, or TBI, his right arm was completely severed above the elbow, suffered a fractured leg, broken right foot, shrapnel injuries, visual impairment, complications due to acute anemia, hyperglycemia, infections, and would later be diagnosed with Post Traumatic Stress Disorder. He remained in a coma for over 2 ½ months, and withdrawal of life support was considered, but thankfully he pulled through.
As an above elbow amputee with a severe TBI, Ted was one of the first major explosive blast “polytrauma” cases from Operation Iraqi Freedom, Walter Reed Army Medical Center or the Department of Veterans Affairs (VA) had to rehabilitate. Much of his treatment was by trial and error, as there was no model system of care for a patient like Ted, and there still is no long-term model today. His situation was an enormous challenge, as Walter Reed was only able to rehabilitate an amputee, not a TBI, the VA was able to nominally treat a TBI, but not an above elbow amputee, and neither were staffed to provide appropriate behavioral health care for a patient with a severe TBI. Because Ted could not access the necessary services, where and when he needed them, he suffered a significant setback in 2005, that put him in the hospital for two weeks, and would take a year to rebound from.
Ted has made a remarkable recovery by any standard, because we have strayed from standardized treatment, and developed a patient-centered path. I had to educate myself about, and coordinate, additional outside care. Often, access to the necessary services required intervention from the highest levels of government, or for us to personally finance them ourselves. But despite our best efforts, Ted is still unable to easily receive comprehensive care for all of his major health issues, due to shortcomings in the current system, and because of the time his needs demand of me, I have been unable to return to regular work or school. We have been blessed to have family, with the means to see us through these difficult times, and help with the expenses. I was fortunate to have the education, of growing up in Washington, D.C. and learning about the workings of the various Federal agencies. Our situation is not typical though.
We have a few ideas, to provide better long-term care, we respectfully wish to share:
Special Monthly Compensation for Integration, Quality of Life, Dependants’ Educational Assistance, and Respite Care
Individuals like SGT Wade, who require someone to be available for assistance at all times, are not compensated appropriately. These Veterans would require residential care otherwise, but are not granted the higher level of Aid and Attendance, because they do not require daily health-care services provided in the home by a person licensed to perform these services, or someone under regular supervision of a licensed health-care professional. We feel the criteria should be clearly outlined, so appropriate compensation may be granted in the case of an individual who needs assistance managing care, personal affairs, or requires support outside of the home, to rehabilitate and integrate into their community, or to achieve a better quality of life.
Both in the past, and at present, we have paid someone to assist Ted outside of the home. This allows him the flexibility to hire a peer of his choice, to provide community support, and accompany him on sightseeing outings he has researched and planned with his therapist as part of his community integration, to provide transportation to the store to purchase books for homework assignments, go to the community center to swim laps, or help him balance his check book at the end of the day. Not only has this enabled Ted to come closer to achieving independence, but it has greatly improved symptoms of depression by restoring hope and self confidence, allowed him to attain fitness goals and control his blood sugar without insulin injections, all while providing much needed respite care for me. Unfortunately, the current VA respite programs are not appropriate for a Veteran like Ted. With better resources, I might be able to access the Dependants’ Educational Assistance for which I qualify, but our circumstances do not allow me to take advantage of, before the benefits expire. This would not only help me get back to having a life of my own, but raise Ted’s standard of living as well, by increasing my earning capacity.
Compensated Work Therapy (CWT) for TBI
Largely due to the success of the program we have created for Ted, the next phase of his recovery will probably include some sort of vocational rehabilitation. He has already had the opportunity to participate in volunteer work, through counseling and job coaching provided by a private practice near our home, where he attends a day treatment program for behavioral health and TBI. Now he is ready for the next stepping stone to employment. The current Department of Veterans’ Affairs Vocational Rehabilitation and Employment Service is more of a challenge than is healthy for someone with the significant cognitive deficits and the emotional needs Ted has. VA work therapy programs, while developing work tolerances and promoting effective social skills for the more seriously impaired, are set in an insulated environment. A work therapy program, expanded to other community settings, to accommodate patients like Ted, who are better served outside of a sheltered atmosphere, would be more effective. Volunteer or internship positions, or later, a part-time job that sparks his interest, would be more therapeutic. Not only would this help him acquire the confidence and independence he needs to some day become gainfully employed, but aid in his integration, by providing constructive, meaningful activities for him to participate in outside of the home.
Counseling, Life Skills and Patient-Specific Case Management
Although many basic therapies are offered, rarely do they include teaching socially appropriate behaviors, which are commonly an issue after a TBI. This task often falls on the Veteran’s family member or spouse, increasing the responsibility of the care giver, and causing conflict with the Veteran, who feel they are being treated like a child. Ted has had the advantage of community peer support, but also a counselor at the private practice I have previously mentioned, to help him redevelop age appropriate social skills, allow me to be his spouse, and him to maintain his dignity. She has also worked with Ted to develop healthy coping skills, to manage cognitive deficits, improve mental health, and develop patient-centered treatment plans, which focus specifically on his unique challenges. Again, our situation is not typical though. This is something difficult to provide in an institutional care environment, like the Veterans Health Administration, without greater flexibility, and more resources to provide increased face time with the patient, and better injury-specific expertise.
The challenges we have faced, are the same as countless other Veterans, many of whom have not had the resources Ted has had available to him, or an advocate capable of negotiating the system. A Veteran I often think about, who had a young wife with a newborn baby, and nothing more than a high school education, should have received the same world-class care as my husband, but sadly will not. Despite my best efforts to be a support to his spouse, who was overwhelmed by motherhood, while trying to negotiate a seemingly impossible system, she eventually left him, because it was more than she could handle. A Veteran’s care should not depend on what family they were born into, who they married, or whether or not family obligations allow for their loved one to advocate for them, but sadly it does. Though we will never be able to fully compensate seriously wounded Veterans for the sacrifice they have made on our behalf, we can certainly do a better job of managing their care, rehabilitating them to their fullest potential in a timely manner, and providing the necessary resources to maximize their quality of life. I am pleased to see, the Subcommittee is taking a look back to explore ways to learn from the past, and address the needs of the Veteran injured yesterday. This will ultimately improve the care of the Service Member injured today, as well. Mr. Chairman, thank you again for the opportunity to share our story with you today. I look forward to answering any questions you may have for us.