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Submission For The Record of Paralyzed Veterans of America

Chairwoman Buerkle, Ranking Member Michaud, and members of the Subcommittee, Paralyzed Veterans of America (PVA) would like to thank you for the opportunity to submit our views on the implementation of the caregiver provisions of P.L. 111-163, the “Caregivers and Veterans Omnibus Health Services Act.”  The Subcommittee proposes to answer the question, “Are we getting it right?”  Simply put, the VA is not getting it right, and we hope that the Administration will review the steps it has taken so far and revise them appropriately.  Likewise, we urge Congress to continue to conduct oversight of the VA’s implementation plan to ensure that its full intent is being met. 

PVA and its partners worked extremely hard to get comprehensive caregiver legislation enacted during the 111th Congress.  Fortunately, on May 5, 2010, the President signed into law P.L. 111-163, the “Caregivers and Veterans Omnibus Health Services Act.”  This legislation created an innovative new caregiver program to be administered by the Department of Veterans Affairs (VA).  The law called for the VA to begin implementation of this important new program within 270 days of enactment of the bill.  This placed the deadline for implementation of this legislation in February of this year.  However, the VA’s efforts have fallen flat, to say the least. 

As you know, the VA recently published its interim final rules regarding the implementation of the caregiver provisions of P.L. 111-163.  PVA was very disappointed to see that the VA tailored its eligibility criteria very narrowly to provide for services for a much smaller number of veterans than Congress intended.  The VA essentially explained that it will base eligibility for the new caregiver provisions on whether or not the veteran being cared for would otherwise be kept in an institutional setting.  This simply ignores the call for more home and community-based care settings, particularly for the newest generation of veterans.  Moreover, it ensures the narrowest scope of eligibility for the caregiver benefits.  This is totally unacceptable. 

We were already concerned about the fact that the original legislation divided the levels of services provided between Pre-9/11 and Post-9/11 service-connected disabled veterans.  And yet, we ultimately supported the final legislation because it will do a great deal of good for the newest generation of severely disabled veterans while allowing for the VA to expand the broad range of caregiver services to Pre-9/11 veterans in the future. 

PVA is also seriously concerned about the VA’s lack of commitment in its FY 2012 budget request and FY 2013 advance appropriation estimate.  For FY 2012, the VA requested approximately $65.9 million for the implementation of the caregiver provisions of P.L. 111-163 and an additional $70.6 million for FY 2013.  This is especially troublesome in light of the fact that during consideration of the legislation, the costs were estimated to be approximately $1.6 billion between FY 2010 and FY 2015.  This included approximately $60 million identified for FY 2010 and approximately $1.54 billion between FY 2011 and FY 2015.  However, no funding was provided in FY 2010 or FY 2011 to address this need.  Moreover, Secretary Shinseki clearly identified a shortfall in funding for the provisions of P.L. 111-163 in a letter he sent to Congress on July 30, 2010.  As a result, the VA will have an even greater need for funding to support P.L. 111-163 between FY 2012 and FY 2015 in order to fully implement the provisions of the law based on the full intent of Congress.  With this in mind, The Independent Budget for FY 2012—co-authored by AMVETS, Disabled American Veterans, PVA, and the Veterans of Foreign Wars—included a recommendation of approximately $385 to fund the caregiver provisions of P.L. 111-163. 

PVA has over 60 years of experience understanding the complex needs of spouses, family members, friends, and personal care attendants that love and care for veterans with life-long medical conditions.  The aspects of personal independence and quality care are of particular importance to veterans with spinal cord injury/dysfunction.  As a result of today’s technological and medical advances, veterans are withstanding combat injuries and returning home in need of medical care on a consistent basis.  Such advances are also prolonging and enhancing the lives and physical capabilities of injured veterans from previous conflicts.  No matter the progress of modern science, these veterans need the health-care expertise and care from a health team comprised of medical professionals, mental health professionals, and caregivers.  As a part of the health care team, caregivers must receive ongoing support to provide quality care to the veteran. It is for this reason, that we strongly urge VA to develop support and educational programs by conducting caregiver assessments that identify the needs and problems of caregivers currently caring for veterans. 

PVA members have more direct interaction with caregivers than any other individual group of disabled veterans.  As such, PVA has developed educational materials over the years to benefit the disabled veteran, his or her family, and the caregiver on the best practices for dealing with the myriad of challenges they will face.  I would like to highlight two publications in particular that PVA developed that address these challenges and issues.

One very important publication that PVA developed many years ago is “Yes, You Can!  A Guide to Self-Care for Persons with Spinal Cord Injury.”  The fourth edition of this book is available through PVA’s website.  The book serves as a self-help resource for severely disabled veterans, their families and their caregivers, as well as all people with disabilities, with a focus on individuals who have incurred a spinal cord injury or disorder.  The book is written expressly for new spinal cord injured individuals providing them with a lifelong reference guide.

For over two decades, “Yes, You Can!” has been compiled and edited by Dr. Stephen P. Burns, a practicing VA SCI physician, and Dr. Margaret C. Hammond, Chief Consultant for VA’s SCI Service, as well as more than 40 experts from the Seattle VA Health Care System.  Having answers to the myriad of challenges that SCI veterans and their families might face is central to personal care and independence for people who have SCI.  Additionally, “Yes, You Can!” includes a list of print, online and community resources for obtaining additional information.  The book equips people with disabilities with essential information on how they can lead healthy, productive lives and reintegrate fully into the community. 

The second publication that PVA developed is a consumer guide called “Managing Personal Assistants.”  This important book provides critical information on how to best determine your personal assistant or caregiver needs.  It offers advice on how to recruit, hire, properly train and retain, and when necessary, fire, a personal assistant or caregiver.  It allows a severely disabled veteran and his or her family to be well-informed when making the caregiving decisions that are best for him or her. 

Our experience has shown that when the veteran’s family unit is left out of the treatment plan the veteran suffers with long reoccurring medical and social problems.  However, when family is included in the health plan through services such as VA counseling and education services, veterans are more apt to become healthy, independent, and productive members of society.

With regard to family caregiver services, we ask that VA continue its effort to enhance the support and educational services provided to family members caring for veterans.  Moreover, as the VA begins full implementation of the caregiver provisions of P.L. 111-163, we believe that it will be essential to incorporate medical professionals or clinicians into the training.  Due to the unique health care challenges often associated with the catastrophic disabilities of those veterans who need caregiver support services, only clinicians can provide the broadest scope of medical care support in training. 

As the veteran community is aware, family caregivers also provide mental health support for veterans dealing with the emotional, psychological, and physical effects of combat.  Many PVA members with spinal cord injury also have a range of co-morbid mental illnesses, therefore, we know that family counseling, and condition specific education is fundamental to the successful reintegration of the veteran into society.  Combat exposure coupled with long and frequent deployments are associated with an increased risk for Post Traumatic Stress Disorder (PTSD) and other forms of mental illness.  In fact, the VA reports that Operation Enduring Freedom and Operation Iraqi Freedom (OEF/OIF) veterans have sought care for a wide array of possible co-morbid medical and psychological conditions. 

We believe that Vet Centers should increase coordination with VA medical centers to accept referrals for family counseling; increase distribution of outreach materials to family members with tips on how to better manage the dislocation; improve reintegration of combat veterans who are returning from deployment; and provide information on identifying warning signs of suicidal ideation so veterans and their families can seek help with readjustment issues.  PVA believes that an effective mental illness family counseling and education program can improve treatment outcomes for veterans, facilitate family communication, increase understanding of mental illness, and increase the use of effective problem solving and reduce family tension.

There are approximately 44 million individuals across the United States that serve as caregivers on a daily basis.  The contributions of caregivers in today’s society are invaluable economically as they obviate the rising costs of traditional institutional care. 

PVA would like to thank this Subcommittee for the opportunity to express our views relating to the implementation of the VA’s new caregiver program.  We hope that the Subcommittee and Congress will take an active role to ensure that the VA is actually implementing the provisions of P.L. 111-163 as intended.  Failure to comply with the intent of Congress is simply not an option in this case.  The most severely disabled veterans and their families are depending on the VA to get it right. 

We look forward to working with the Subcommittee as it continues addressing these issues.  We will gladly respond to any questions.  Thank you.