WHEN REHAB MEDICINE IS CUT – YOU HURT TOO

Gabby Gifford’s amazing story and the release of her book and home video have put rehabilitation medicine and its heroic professionals—the doctors, nurses and therapists—temporarily in the public eye. But I have no doubt it will soon fall back in the shadows of public consciousness.

Medical rehabilitation isn’t sexy.  There’s no rush of the emergency room—no gurneys or defibrillators or physicians yelling orders in an environment of barely-controlled chaos.  There’s no discovering cures or fashioning a human heart out of stem cells.  And, while George Clooney would make a handsome rehabilitation physician on TV, the networks aren’t lining up to film a pilot involving a rehab hospital.

Rehabilitation does not provide instant results; rather, it is a long, hard road.  It is a near-relentless struggle over the course of weeks, months, and even years to help an individual who has been severely injured get back as close as possible to where they were before their injury.  It can involve countless hours of hard work and determination just to remember the word for an apple, to gain the motor skills to hold a fork, and the ability to dress oneself again.  

It’s a journey that most often involves families and friends.  It is a road that my children and I walked with my husband Bob when he was severely injured by a roadside bomb in Iraq.  But consider this:  at some point every one of us will need expert rehabilitation care for a loved one or ourselves.  How many of us know someone who has been in a car accident, or had a stroke, or broken a hip?  As I move through my 50s, I’m more keenly aware of my own pressing mortality, the fact that anything can happen to myself, my loved ones and my family members.  It’s simply a fact of life. 

It was impossible not to think of our own journey when I watched the home video of Rep. Gabby Giffords working hard and making such great strides.  Many things are possible on the journey of recovery.  I see them at work every day with Bob.  But none of my husband’s achievements and his “getting back to himself” would have been possible without rehab.  

Sadly, the type of quality medical rehabilitation care that Bob and Rep. Gabby Giffords needed—and the type of care that you or your loved ones may need in the future—is at significant risk due to current proposals in Washington proposed as part of deficit reduction.  These cuts will reduce patient access to care and threaten the viability of rehabilitation providers.  Thousands of people in need of medical rehabilitation will no longer receive these services.  Training as well as therapists and medical jobs will be cut – hospitals will have no choice.  

Patients in rehabilitation hospitals are often at their most vulnerable.  It’s an emotional and scary time, usually following an injury, sudden event or illness.  Most Americans already face very real limitations on their access to inpatient and outpatient rehabilitation care – their insurance runs out or benefits stop before their treatment needs end.  The average insurance plan for traumatic brain injury covers six weeks of rehab.  That barely begins to scratch the surface of an injury that can take years to heal.  

Patients and their families should not unfairly bear the burden of balancing the federal budget.  Cheaper is not better.  Who would ever choose to see their catastrophically hurt loved one in a nursing home instead of a rehab hospital?  But that will be the result if these cuts are approved.  

Talk with these people, as well as our returning wounded veterans, about how overwhelming the access and financial challenges can be.  At a time when our population is aging and returning veterans are in need of services in their local communities, services will be slashed or eliminated. Rehab is darn hard work—placing challenging policy and additional access obstacles in front of these patients are not in anyone’s interest.  

It’s easy to put medical rehabilitation at the back-of-the-bus in medicine.  But we need to fight cuts that will eliminate access to high quality care for your spouse, your grandmother, and your child.  Otherwise, society and each of us will pay in many unanticipated ways, including higher costs, reduced quality of life for the disabled, and higher levels of intense stress for families and caregivers.  

Rehab saves lives and families.  It saved mine.  In my lowest moments, it was the energy, motivation, expertise, and commitment of the professionals and caregivers in rehab hospitals that got me through.   I have a very clear memory of walking onto the floor of Bob’s inpatient rehab hospital, my spirits at their lowest ebb.  I had run out of gas, and my shoulders were hunched in a C-curve.  A voice piped up from behind the desk.  “Come with me Mrs. Woodruff,” the young physical therapist commanded.  She shut the door behind her tiny office, “ has anyone asked you how you are today?”  she inquired, as I burst into tears of gratitude and release.  She then proceeded to give me a ten-minute shoulder massage that I will never forget.  Her kindness and compassion humbled me that day.  And it lifted me up.  She had extended her care beyond simply focusing on the patient and offered it to an exhausted caregiver. That’s just a tiny slice of the magic that takes place in rehab hospitals.  We can’t allow these much needed resources to be vastly diminished. 

With the skills and support of the therapists, nurses, doctors and caregivers in medical rehabilitation hanging in the balance, I want to lend my voice to wake Washington up.  It may not be a sexy, but it’s a critical one.

WHO WILL CARE FOR THE CAREGIVER?

On April 19, 2005, Debbie Schulz of Friendswood, Texas, got the call every parent of a service member in Iraq and Afghanistan dreads.  Her child had been wounded.  When she hung up the phone, in shock, all she knew was that her son was considered to be “VSI”, an acronym that she would later learn meant: “very seriously injured.”   

Steven and siblings four months before he was injured.

More than 48 hours later Debbie began to learn some of the details.  Her beloved eldest son, Steven Schulz, a Lance Corporal in the United States Marine Corps, had been patrolling Fallujah, Iraq when it happened.  His unarmored humvee was hit by a roadside bomb, a mortar shell cleverly built into a concrete curb in order to elude detection.  Insurgents remotely detonated the device and within the fraction of a second, thousands of pieces of shrapnel penetrated the vehicle.  One piece of metal shrapnel flew into Steven’s face near his right eye and lodged in his brain.  Doctors told the family that he had sustained a severe traumatic brain injury and devastating damage to his right eye.  Steven was paralyzed on his left side, lost most vision in his right eye as well as peripheral vision in his left. 

Within seventy-two hours after their son’s injury, Debbie and her husband Steve rushed to Steven’s bedside at the National Naval Medical Center in Bethesda, Maryland.  Packing only a small suitcase, Debbie could never have known that she would not return to her home in Friendswood for nearly seven months.  Steven was in intensive care for thirty-two days and in June of 2005 he was moved to the Veteran’s Administration Hospital in Tampa, Florida.  In order to be at Steven’s bedside around the clock, Debbie initially took a leave of absence from her job and ultimately had to resign her position, as so many in this situation do.  Debbie had a new job—that of caregiver – an undefined role for which no one receives training.  And yet more than 45 million of us in this country have stepped into those shoes. 

At the VA Hospital in Tampa, Debbie found herself alone and without a strong support network nearby. Her husband needed to return to Texas to get back to work and without Debbie’s supplemental income, the family began to dig into retirement savings in order to continue to make ends meet.  Finally, she demanded that her son be moved to a treatment facility close to home so that he would be able to re-integrate into their family and community.

Once there, Debbie and Steve began the long, frightening journey to wait and watch their son recover.  The first step was healing from the acute wounds and then they began the slow and painstaking crawl of daily rehabilitation to try to regain as much of Steven’s former self as possible.  But as time passed, Debbie realized that if they only “waited and watched” rather than strongly advocate on their son’s behalf, they might never see Steven reach his potential.  They became determined to see some resemblance of the young, bright-eyed boy they had raised.

Steven is the eldest of three children. Steve was a national sales manager and before her son’s injury, Debbie had been a thriving and successful local high school teacher.  Like most families in America, theirs was a life full of blessings combined with its share of challenges and rough patches.  At first, Debbie was apprehensive when her son joined the Marines, but Debbie and Steve were proud that their son had chosen to serve.  Steve had even founded a non-profit called “Supplied to Survive,” that lined up much-needed items such as GPS devices, rifle scopes, thick gloves, etc. for shipment to the troops in Iraq.

Like so many caregivers, Debbie has led the charge on the family’s journey to recovery and she has managed to keep her family together in the process. Debbie fought very hard to receive state of the art cognitive rehab and other rehabilitative therapies at a civilian hospital in Houston.  And she continues to navigate through the red tape of our governmental system.  Due to her efforts and the hard work of Steven himself, he has regained some use of his left leg, uses a walking stick and can perform most of his daily living activities.  Steven is integrated into the community, volunteering and taking classes locally. 

Steven and siblings in Hawaii after his recovery. 

But here is where Debbie exemplifies so many caregivers I have met.  She didn’t just stop with her own son, as much as she had on her plate, Debbie went on to ensure that other service members would receive the same care she had fought so hard to win for her own child. She has worked tirelessly and traveled with Steven to Washington in order to fight for better funding and expansion of benefits and entitlements for injured service members and their families.  Her dedicated efforts were instrumental in ensuring that patients had opportunities to receive treatment close to their homes and as a result, changed the way the Houston VA partnered with civilian treatment facilities to treat traumatic brain injury patients.
 
As a mother, a wife, and the center of the family by nature, Debbie holds it all together, some days, she would admit, just barely.  Like so many female caregivers especially, the burden of care for their two other children and the household falls largely on her.  The toll on a family is not to be underestimated.  Debbie is the thread that keeps it all together and she pulls it taut in order that their home life doesn’t unravel.  It is an effort that continues without a break, without a vacation from stressors.
 
Debbie is my definition of a true caregiver, compassionate, kind, articulate, educated, passionate, and a selfless person who has given every ounce of energy to improve her son's outcomes and those of other injured service members.  With Debbie's constant care and dedication, Steven has worked hard to become more independent.  
 
In the words of her son: “My mom is the strongest, smartest woman in the world” — she has and will continue to carry him through the tough times.

Steven with his mom, Debbie.

Each Veteran’s Day we spend a great deal of effort honoring those who have served.  And rightly so.  But this year let’s also honor the loved ones here at home, like Debbie Schulz who serve every day in unsung roles.   It is up to every one of us to support, care for and assist those caregivers.  You can learn more at www.remind.org