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May/June 2024 -   -  

A Painful Legacy

Despite steady progress on VA Spina Bifida Benefits, problems still persist

Last October, Congress passed a law intended to improve management procedures in the Department of Veterans Affairs. The bill was tailored to improve a program that tackles one of the Vietnam War’s more insidious and enduring health legacies that has affected veterans and their children – spina bifida.

While it has been established that human exposure to Agent Orange is linked to a range of deleterious conditions, from hyperthyroidism to various cancers, it is less well known that victims of AO exposure were not just the men and women who served. Children conceived by veterans exposed to AO in Vietnam and elsewhere have suffered debilitating birth defects, some of which, after much prodding based on research, the VA eventually recognized as service-connected.

One of those birth defects is spina bifida. The U.S. Centers for Disease Control and Prevention categorizes spina bifida as a neural tube defect. “When the neural tube doesn’t close all the way, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves,” the agency says. Disabilities stemming from spina bifida range from moderate to severe, including significant bladder and bowel dysfunction, neurologic dysfunction, and other conditions.

In 2008, Congress enacted legislation creating the VA’s Spina Bifida Health Care Benefits Program (SBHCBP), which was to be administered by the agency’s regional office in Denver. Today, the benefits include monthly cash payments ranging from about $407 to $2,352, depending on the level of disability.

The VA classifies spina bifida disability in three levels – from Level I, or moderate disability, to Level III, the highest degree. All forms of spina bifida are covered except spina bifida occulta, which is not considered debilitating. SBHCBP also covers vocational training, rehabilitation costs, and, most importantly, specific health care costs. Beneficiaries can get care at a local VA medical facility or go to an approved outside provider.


However, since the SBHCBP’s inception, some veterans have found it difficult to get the care their children need and are entitled to by law, primarily because the program’s processes and systems are daunting to navigate. In Ron Nesler’s case, the VA seemed to be doing everything it could to avoid providing benefits. Nesler’s stepdaughter, whose father served three tours in Vietnam, was born with spina bifida. She has been classified Level III, and Nesler says he has had to fight the agency to get almost anything for her at all. “We have been at war with the VA spina bifida program for years,” he said. (Details of his ordeal are chronicled in the November/December 2007 issue.)

In 2007, the VA said Nesler and his stepdaughter’s experience was not typical, but in 2012, the journalist Benjamin Krause became aware of Nesler’s ongoing situation and filed multiple Freedom of Information Act requests with the VA to find out anything he could about the spina bifida program and the agency’s administration of it. Krause says an attorney he worked with received a call from a VA employee who said to “back off” from making FOIA requests. When the employee realized he was speaking to an attorney and not Krause, he apologized for misdelivering the message to the attorney, but did not retract it.

Krause did not back off and ultimately came away with the impression that the spina bifida program was “an absolute black hole, and that the VA had hoped it would forever be obfuscated.”

In 2019, VVA investigated the issues it was hearing about the SBHCBP and was not reassured. “Basically, the VA was telling people, ‘Figure it out for yourself,’ ” said Marc McCabe, VVA’s Special Advisor to the president and National Board of Directors. “We talked to the VA about it. They said they had it all under control and would fix things.”

VVA expressed its concerns to Sen. Mike Braun (R-Ind.), who had also been receiving complaints about the spina bifida program from constituents. Braun asked the VA’s Office of Inspector General to review and evaluate the program. When the IG report came out in February 2021, McCabe said, “It confirmed all our suspicions.”

Mokie Porter/VVA
The VVA delegation at the VA's Denver office last July to discuss the Spina Bifida Health Care Benefits Program included Marc McCabe, the Special Advisor to the president and National Board of Directors (behind the third chair from the left,) and Director of Veterans Benefits Patricia Harris (on the right).

The report said SBHCBP did not “adequately communicate or share data,” a situation that contributed to “improper payments being sent to beneficiaries after their deaths and delays in new beneficiaries being enrolled in health care.” It also said that because the VA did not “consistently and accurately reach out and communicate with eligible and enrolled beneficiaries, individuals with spina bifida and their caretakers did not receive needed information about spina bifida benefits and how to obtain them.”

In short, as a statement from Braun’s office put it, “[T]he spina bifida program is not delivering benefits appropriately and failing to conduct proper oversight, leading to waste of taxpayer dollars.”

The OIG report made four recommendations to address the problems and deficiencies identified:

  • Formalize interagency sharing processes between the VA’s Denver Regional Office and the Office of Community Care, which has direct responsibility for administering SBHCBP, to prevent payments from continuing to deceased beneficiaries.
  • Ensure all eligible beneficiaries are promptly enrolled in health care.
  • Ensure agents at VA national call centers provide accurate and comprehensive information about spina bifida benefits.
  • Develop a process in the Office of Community Care to ensure beneficiaries receive the services for which they are eligible.
  • In addition, Braun wrote and co-sponsored a bill with Sen. Maggie Hassan (D-N.H.) that would bolster and codify the OIG recommendations. VVA and other VSOs endorsed the bill, which ended up passing both the House and Senate unanimously in 2023. This is the bill President Biden signed into law last October.

    What exactly does the law do? And is anything likely to change? The answers aren’t simple.


    The new law essentially amends the existing legislation regarding the VA’s responsibilities to eligible veterans’ children. It establishes an advisory council and an outreach team to make sure people enrolled in the program are receiving all due benefits. It also guarantees that children will continue to receive benefits after the death of their parents.

    Last July, a few months before the bill became law, VVA sent a delegation to the VA’s Denver office to discuss the program and its troubled history with SBHCBP officials. McCabe was part of the delegation, and he said he was impressed by much of what he saw and heard. “It seemed there had been progress,” he said. “Care was getting to the beneficiaries.”

    One particular concern had been the bureaucratic nature of the claims process. The first step is to file a claim for benefits with the VA’s Veterans Benefits Administration, which determines eligibility. Once deemed eligible, claimants are directed to the Office of Community Care in Denver, which then initiates health care and pharmacy benefits for the claimants.

    In the July meeting, knowing that this entire process from claim to initiation to benefit could often be slow and cumbersome, the VVA delegation asked what had been done to improve it. Officials said they had recently automated the claims processing system with a customized off-the-shelf commercial program. Quality review specialists also were added to the process.

    For claimants or their representatives with questions about what to do, officials said the OCC has a dedicated telephone line for voice mail and that all calls are returned within two business days. Questions can also come in via email. The OCC also created a document, “Roadmap to Spina Bifida & Birth Defects Compensation and Health Care Services and Supplies,” for outreach efforts.

    After the meeting, McCabe said he felt “dissatisfied” by the VA’s responses. “I didn’t get the impression they were ignoring the problem, but conversely they were not going out of their way to resolve these major issues,” he said. Moreover, the OIG seemed satisfied with recent changes: the agency had promised to implement all four recommendations in the OIG report.

    Concerns remain, though, and one of the more significant regards numbers. As McCabe pointed out, some 3.5 million American men and women served in Southeast Asia and Vietnam during the period of 1964 and 1975, and VA policy presumes anyone who served there was exposed to Agent Orange, but only 1,062 children with spina bifida currently receive benefits.

    The numbers strongly suggest there are more eligible children (and their parents) who have no idea that VA benefits even exist. A cursory look on social media seems to bear this out. On Facebook alone there are many groups referring to themselves one way or another as children of Vietnam War veterans exposed to Agent Orange, and many of the posts involve confusion about the existence of VA benefits for veterans’ children with birth defects in general and spina bifida in particular.

    John Gastaldo/San Diego Union-Tribune
    Seven-year-old Emma Mondragon, whose father is a Marine at Camp Pendleton, was born with spina bifida and uses a wheelchair, participates in wheelchair dance shows in San Diego, California. Ben Mondragon, left, feeds his daughter using a gastrostomy tube at the dance studio in between rehearsals.

    “The VA does have the ability to find more eligible kids,” McCabe says. “The VA is a big presence in the veteran community, and the VA talks to veterans all the time. It would not be overly burdensome for them to be asking, ‘Hey, do you have any kids with spina bifida?’ The VA also works a lot with VSOs, which could help. The VA wouldn’t have to do it alone.”

    Michael Rohrbach, executive director of the VA’s Denver regional office, said that while the program provides relevant information during outreach events only in Colorado and Wyoming, it does support the VBA’s larger, national outreach efforts. This is a main contention is that the outreach isn’t reaching the needed population and not completed on a national stage.

    There was also concern that not enough VA employees handled the spina bifida claims process. Rohrbach, however, said that his office has “a team of 14 highly trained claims processors focused primarily on all spina bifida and birth defects benefit claims. The only time they redirect their focus on other types of claims is when their spina bifida and birth defects workload is low.”

    But perhaps the most significant outstanding concern involves the relatively small number of VA employees who serve as case managers. The OIG report noted that in fiscal year 2019, only one percent of entitled beneficiaries had a social worker or case manager. Case managers are critical in making sure beneficiaries get the care they deserve when they need it, especially beneficiaries classified as Level III, the most disabled, who are least likely to serve as their own case managers. Case managers’ responsibilities range from coordinating health care to properly maintaining a claimant’s records.

    The legislation states the VA will supply case management, but it doesn’t specify whether VA employees or private services should provide it. Usually, the VA has outsourced case management to social workers or private nurses, and the spina bifida program’s current literature indicates this is still the case. But as Sen. Braun pointed out, “This is relying on non-VA employees to understand and effectively navigate a VA system.”

    Responding to The VVA Veteran’s question as to why case management is outsourced, a spokesman for the VA’s Veterans Health Administration, which handles case management, provided a statement:

    “Case management is a covered, reimbursable benefit under VA’s Spina Bifida Health Care Benefits Program. VA’s legislative authority is to administer SBHCP with the direct care and case management for beneficiaries being performed by professionals in the beneficiary’s community. VA is working to expand outreach and assistance to beneficiaries for securing case management and other services associated with SBHCB benefits.”

    Ron Nesler is unimpressed with the October 2023 law because it doesn’t address case management, which he says is still woefully lacking. Compelling the VA to provide case management would “do away with 90 percent of the problems still in the program,” he said.

    For instance, the bills for outside provider services are sent to the SBHCBP, but Nesler says they often don’t get paid, disrupting care for the claimant. “And if you don’t have a case manager, all you can do is get on the phone and sit on hold for a couple hours and then talk to a low-rank nobody who can’t do anything for you.”

    Information & Resources:

    Upon request, the Denver VA Regional Office will provide spina bifida and birth defects benefits and services briefings to any interested public, private, or non-profit organization. Email requests to BDEFECTS.VBADEN@va.gov or DIR.VBADEN@va.gov.

    While the VA doesn’t provide information specific to spina bifida and birth defects via social media, it does provide online information, resources, and services at: https://www.va.gov/COMMUNITYCARE/programs/dependents/spinabifida/index.asp.




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