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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 ongoing implementation of the caregiver provisions of P.L. 111-163, the “Caregivers and Veterans Omnibus Health Services Act.” Additionally, we appreciate the opportunity to outline the concerns that we raised in our comments on the Interim Final Rule that the Department of Veterans Affairs (VA) published on May 5, 2011, on the final implementation of the caregiver program. We urge Congress to continue to conduct oversight of the VA’s implementation plan to ensure that its full intent is being met. Moreover, we encourage the Subcommittee to continue to follow-up with the VA on the reporting requirements for the next two years.

PVA has 65 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. 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.

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. Unfortunately, the VA was very slow to accomplish that task.

As you know, the VA republished its Interim Final Rule on May 5, 2011, regarding the implementation of the caregiver provisions of P.L. 111-163. PVA expressed concerns with four areas of the caregiver program as outlined by the VA’s rules. They include:

veterans’ with severe illnesses excluded from eligibility; the caregiver stipend; the revocation of primary family caregiver status; and, the report on expansion of family caregiver assistance. Additionally, we have expressed concern in previous comments for the record with the projected funding needs to implement the caregiver program and continue to maintain it through at least FY 2015, as originally envisioned by the legislation. We will explain each of these issues individually.

Veterans’ With Severe Illnesses Not Considered Eligible

PVA has serious concerns that veterans who have incurred a severe illness as a result of their service are excluded from consideration as eligible for this program. This is the number one complaint that we have received from our members who are eligible under the Post-9/11 criteria for this program. PVA’s membership includes veterans with spinal cord injury or dysfunction (disease). A spinal cord disease is no less catastrophic than a spinal cord injury. It is a fact that veterans who have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) and Multiple Sclerosis (MS) will eventually experience a catastrophic impact on their activities of daily living. And yet, these individuals who may be in greater need of caregiver services than any other population of injured veterans have no avenue for support through the new caregiver program.

Unfortunately, the VA’s interpretation of the law excludes consideration of veterans with severe illness. However, the legislation was clearly intended to support populations of veterans that have experienced a catastrophic injury or illness. In fact, Congressman

Michael Michaud (D-ME), then Chairman of the House Veterans’ Affairs Subcommittee on Health, commented when introducing similar caregiver legislation, “the bill would establish a caregiver program to help family and non-family members who provide care for disabled, ill, or injured veterans.” Additionally, the Secretary of Veterans Affairs, Eric Shinseki, emphasized during the roll-out of the new caregiver program that “caregivers are critical partners with VA in the recovery and comfort of ill and injured veterans.” Meanwhile, the VA has interpreted the language of the law very narrowly ensuring that veterans dealing with catastrophic illnesses will be unable to participate in the program. This is simply unacceptable.

We have been told that the VA believes it needs clarifying legislation in order to make this change to the program. If this is in fact true, then the Subcommittee must move immediately to consider legislation to correct this inconsistency in the implementation of the program in order to ensure that caregiver assistance is available for veterans who have experienced either injury or illness.

Caregiver Stipend

With regards to the caregiver stipend, the interim final rule states that the caregiver stipend amount will be determined by the eligible veteran’s level of dependency based on the degree to which the eligible veteran is unable to perform one or more activities of daily living (ADL), or the degree to which the veteran is in need of supervision or protection based on symptoms of residuals of neurological or other impairment or injury.

The rule also states that the 14 ADLs and needs that are listed in the Eligible Veterans and Servicemembers section will each be given a clinical rating from zero to four, with zero representing no caregiver assistance needed in that area by the veteran, and four meaning the veteran is in need of total assistance with regard to that specific ADL or need.

PVA is concerned that in the current calculation for caregiver stipends, personal care services are not taken into consideration. It is often the case that the very injuries that necessitate a caregiver also result in the veteran not being able to perform personal functions that are also necessary to ensure his or her health and safety, but are not direct medical activities. As a result, the caregiver provides “personal care services” such as financial management or weekly shopping that occupies a significant amount of his or her time and energy.

In the rule, VA defines personal care services as “care or assistance of another person necessary in order to support the eligible veterans health and well-being, and perform personal functions required in everyday living ensuring the eligible veteran remains safe from hazards or dangers incident to his or her daily environment.” While this definition may capture some of the caregiver services outlined in the definition for ADLs, there are many daily responsibilities involving personal care that are not included, and will therefore not be included in the Primary Family Caregiver stipend. If the stipend is to be an accurate reflection of the eligible veteran’s level of dependency and an acknowledgement of the sacrifices that Primary Family Caregiver make to care for

seriously injured veterans, personal care services must be taken into consideration in the stipend calculation.

Revocation of Primary Family Caregiver Status

The interim final rule allows for up to 30 days of continuing caregiver benefits after a veteran revokes the status of a Primary Family Caregiver. PVA understands that the purpose of this safeguard is to determine if remediation is possible, and to allow time for the revoked caregiver to find additional health care coverage if necessary. It is for similar reasons that PVA believes that guidelines should also be put in place that requires the caregiver to provide the veteran with notice should he or she choose to revoke their caregiver status. By designating a specific amount of time that is required for caregivers to continue their responsibilities after notice of revocation, with the exception of caregiver abuse or negligence, the VA gives the veteran time to arrange for replacement care as the veteran will need time to identify a new primary caregiver, make arrangements with the secondary caregiver if necessary, and complete a new VA caregiver application.

Report on Expansion of Family Caregiver Assistance

Perhaps the most important provision in P.L. 111-163 for PVA is the reporting requirements outlined in § 1720G(d). PVA cannot overemphasize the importance of this provision. Specifically, the law states,

“Not later than 2 years after the date described in subsection (a)(3)(A), the Secretary shall submit to the Committee on Veterans’ Affairs of the Senate and the Committee on Veterans’ Affairs of the House of Representatives a report on the feasibility and advisability of expanding the provision of assistance under section 1720G(a) of title 38, United States Code, as added by subsection (a)(1), to family caregivers of veterans who have a serious injury incurred or aggravated in the line of duty in the active military, naval, or air service before September 11, 2001.”

PVA was disappointed that veterans who became injured or ill prior to September 11, 2001, were excluded from the comprehensive caregiver support programs. The fact is, PVA’s members—veterans with spinal cord injury or dysfunction—would benefit from this program more than any other population of veterans. And yet, the majority of those veterans are excluded by the arbitrary date of September 11, 2001, from the comprehensive caregiver program. No reasonable justification (other than cost considerations) can be provided for why pre-9/11 veterans with a service-connected injury or illness should be excluded from the comprehensive caregiver program. Catastrophically disabled veterans needs are not different simply because they may have been injured prior to the selected date.

With regards to the interim final rule, PVA is particularly concerned that the VA offered no reference to this reporting requirement in its proposed rules. We believe that given the opportunity, the VA may simply choose to ignore this requirement so as not to draw attention to an obvious deficiency in the caregiver program that it cannot or will not be able to implement. The VA must ensure that it fulfills this reporting requirement as it is an integral part of the implementation of the caregiver program. This critical report will pave the way to access to much-needed caregiver assistance for many more

catastrophically disabled veterans who are currently being denied eligibility simply because of the arbitrary date assigned to this benefit by Congress.

Lastly, PVA remains concerned about the VA’s lack of commitment in its FY 2012 budget request and FY 2013 advance appropriation estimate for the funding necessary to fully implement this program. While the Administration claims to have provided an additional $208 million for implementation of P.L. 111-163, it is not clear where that additional funding is included in the FY 2012 Medical Care budget request. Our analysis suggests that for FY 2012, the VA actually 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. While we appreciate the fact that the Military Construction and Veterans’ Affairs appropriations bills approved by the full House and currently being considered in the Senate purportedly address this funding need, we believe insufficient funding has been provided to fully implement this program. With this in mind, PVA, along with the co-authors of The Independent Budget—AMVETS, Disabled American Veterans, and Veterans of Foreign Wars—recommended approximately $385 million to fund the provisions of P.L. 111-163 in FY 2012.

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.

Information Required by Rule XI 2(g)(4) of the House of Representatives

Pursuant to Rule XI 2(g)(4) of the House of Representatives, the following information is provided regarding federal grants and contracts.

Fiscal Year 2011

Court of Appeals for Veterans Claims, administered by the Legal Services Corporation — National Veterans Legal Services Program—$300,000 (estimated).

Fiscal Year 2010

Court of Appeals for Veterans Claims, administered by the Legal Services Corporation—National Veterans Legal Services Program—$287,992.

Fiscal Year 2009

Court of Appeals for Veterans Claims, administered by the Legal Services Corporation — National Veterans Legal Services Program—$296,687.