Congress Be Damned, VA Denies Health Care To Children Born With Spina Bifida

Honey Sue Newby

New Harmony, Indiana – This week’s MMQB is a special report on the case of Honey Sue Newby, a child born with spina bifida.

Our goal is to convince the VA to follow the law and stop fighting against this mentally handicapped child and those like her.

I am breaking stride with my regular format because I am incensed. I am incensed that we, as Americans and as veterans, are unable to hold the Department of Veterans Affairs accountable.

Taking it a step further, we are unable to hold our war machine accountable. Day in and day out, we hear story after story of veteran after veteran being denied their benefits.

Whether it is a veteran going for disability benefits, health care, or something else. The benefits we were promised when we signed up for the military are not being provided.

Our country is in the largest breach of contract in the nation’s history. Still, no court and no Senator nor Representative has been able to truly right the wrongs committed by the Department of Veterans Affairs.

This mess over benefits is like the 800 lbs gorilla, and even though everyone is talking about it, nothing gets done.

Veterans are committing suicides. They are getting food from soup lines. They are living in homeless shelters across the country.

What in the hell happened to our country? Where is the honor? Or, was that exported along with most of our country’s industries back in the 1980’s, as well?

The matter has come to a head in a particular way for me recently. Over one year ago, Ron Nesler contacted me.

Before I continue, take a second to write a quick note to Congress here. It can be short or long, but be sure to write something. Only original letters get noticed by Congress. If you want to just keep reading, I include this widget further into the article below.



How The VA Swallows A Cow To Catch A Spider

“I now have him in a corner,” wrote Ron Nesler, a Vietnam veteran and father. “His impulse to clam up and stall was strategically correct, but I have deftly driven him out from that safe piece of ground. And, having entered the fray, he finds himself weak on both facts and law.”

The “fray” Ron spoke of was nothing more than “truth” in Ron’s quest for the VA to follow the law – to provide health care benefits to his daughter who suffers from Spina Bifida caused by Agent Orange.

Ron and I have been friends for a year now. Over that time, he has included me in many of his email bouts with the Department of Veterans Affairs (VA).

A quick glance over subject lines shows his justified anger with the agency: “The Old VA Waltz,” “VA Vampire Parasite Monster,” “The VA has blinked,” “Threats by VA Official,” and more. It would be almost comical if the content of these letters were not so deadly in consequence.

Like many veterans, Ron was drafted into The Veterans Wars in much the same way he was drafted into Vietnam, with little choice other than to fulfill his duty. Then, his duty was to country.

As a result of his sacrifices and the sacrifices of others, he now has to fulfill a new duty – that of being a father to his severely handicapped daughter.

For over 10 years, Ron has fought the VA for health care benefits for his daughter, Honey Sue. Since birth, Honey Sue has suffered from severe spina bifida.

Spina Bifida, which is Latin for “split spine”, is a birth defect that is linked to Agent Orange exposure of parents who served in Vietnam.

Parents exposed to the chemicals pass on damaged chromosomes to their children at conception. Not all children are impacted, but the odds of a child having Spina Bifida if the parent is a Vietnam veteran is twice as high as for regular Americans.

According to Board Member Herb Worthington, of Vietnam Veterans of America (VVA), approximately 5 of 7 Vietnam veterans who go to VVA for benefits help have children with birth defects. While this number does not indicate the overall number of children with birth defects, it does indicate a potential correlation between disabilities and having children with these issues. Sadly, the VA does not recognize most of these birth defects, but it does recognize spina bifida.

Honey Sue and 900 children like her suffer from extreme genetic abnormalities such as mental retardation and developmental deficits, not limited to spina bifida. Many of these children are unable to provide care for themselves and require 24-hour supervision.

As parents age, they become less able to provide the intensive care required by the impacts of the disease. In Ron’s case, he is a disabled veteran who continues to struggle with cancer and other problems related to his exposure to Agent Orange. Now, the hardship of caring for an adult who is developmentally handicapped is extreme.

In response to concerned parents and lobbying from veterans groups, Congress enacted legislation to provide comprehensive health care for these children. Representative Mike Michaud chaired a legislative hearing for HR 5729 – Spina Bifida Health Care Program Expansion Act. It passed within Public Law 110-387 to give VA the authority it needed to cover all health care needs.

Under the current statute, 38 USC §1803, VA must provide, “home care, hospital care, nursing home care, outpatient care, preventive care, habilitative and rehabilitative care, case management, and respite care.” But, like many things, the VA has ignored the Congressional health care mandate.

When Ron approached the VA for help, he was stonewalled. Instead of providing care, or even providing a case manager, the first step in getting real treatment, VA has literally made up excuses as to why they cannot pay for the care.

According to VA Dr. Robert Petzel, VA can only pay for “medical care.” This is flatly untrue, as medical care is only one portion of any treatment plan when it comes to spina bifida.

Meanwhile, the term “medical care” appears nowhere in the statutes or supporting regulations. Further, it was not the intent of Congress to limit the health care available to these children. Congress be damned, VA has ignored the needs of Honey Sue and all children like her.

We contacted Rep. Michaud (ME-D), now ranking member of the House Committee on Veterans Affairs, about the denial of the health care mandate. He did sit in on the 2008 hearing wherein VA said Honey Sue would get the care she needed, so we thought it would be fitting to get a comment from him.

Congressman Michaud said, “Providing comprehensive health care to our veterans and eligible children is a commitment that as a nation we must uphold.” Rep. Michaud continued, “As we move forward this Congress, I’m looking forward to continuing to work with my fellow committee members, the VA, and our veterans to ensure we meet that obligation.”

Sadly, his quote did not even mention the term “spina bifida” or Honey Sue. We contacted Congressman Jeff Miller’s office. They said that Honey Sue had her shot, and that the VA told them the law did not allow kids like honey sue “Attendant Care.” Then they went away.

I became quickly a-tune to this move of the VA and Congress to avoid the issue. They just shift the term to avoid paying and to avoid looking bad. Honey Sue does not need attendant care because she is mentally handicapped. She needs home care.

I contacted VA’s Glenn Johnson for comment. Glenn is Chief of Communications for the Purchased Care division in charge of the program at VA’s Denver Regional Office. He said, “[VA] does not have the authority to provide reimbursement … for aid and attendance / custodial care.”

I pressed the matter, but was unable to get the VA to tell me how it decided that Congress did not mean what Congress said it meant. After all, VA’s Dr. Cross and Mr. Hill during the hearing clearly said VA would provide attendant care and that spina bifida children would receive the same care as 100 percent disabled veterans.

Since these veterans get home care, it seems likely that Spina Bifida children should, too. However, VA says the opposite without following traditional legal adjudicative channels.

In response, Ron told me, “They twist the law and will do anything they can to avoid paying, Congress be damned.” It’s an old insurance trick. They exclude as many forms of coverage as possible after the contract is signed to increase corporate profits. When it comes to the VA, rather than making profits, these exclusions serve to keep the cost of war as cheap as possible.

Techniques like this should come as no surprise from an agency formerly called the Bureau of War Risk Insurance, in 1917. Many of the current benefits laws originate from that era right after World War I through to the New Deal.

By narrowly interpreting the regulations to only cover medical care, the VA avoids reimbursing parents for other forms of important health care. In the end, they only cover about half of the kinds of care the statute requires.

Ron swears he will continue this battle if it kills him. And it might. His deep concern is that once he and his wife are gone, no one will be there to care for Honey Sue. If the VA has its way, Ron’s worst fears will become reality.

The VA has long been accused of spending $2.00 to save $1.95, and this issue is no different.

Only here, all they need to do is not swallow the horse to catch the cow to catch the dog to catch the cat to catch the bird to catch the spider to catch the fly.

They merely need to follow the law set out by Congress.



A Day In The Life Of Honey Sue



Popvox Helps Kids With Spina Bifida

I want to give a shout out to the people at Popvox for helping this cause. They have been great in working with me on setting up a campaign to support these kids with spina bifida caused by Agent Orange.

Like most Americans, the people at Popvox believe that America should honor its commitments to veterans and their families. I think most of us can agree to that.

Take a second to write your elected officials in DC. Rather than just showing that you support the issue, be sure to write a paragraph. Here is an idea:

“I think the VA should follow the law. Congress said kids with spina bifida should get Home Care. I believe the VA should provide this care to children like Honey Sue. My vote will go to the people who support a call for the VA to follow the law.”



What is the relationship between Agent Orange and Spina Bifida in children?

Spina Bifida

This is a condition in which the spine of a child fails to close completely during pregnancy.

When it occurs, the only solution is to try and close the child’s spine immediately after it is born in order to reduce the risk of the child getting infected and also to retain the existing function of the spinal cord. This surgery is ideally performed within the first 24 hours of the infant’s life.

Most children that are born with this condition normally need a lot of surgery and medical care because paralysis easily results from the injury caused to the spine. However, with the medical advancements children that are born with the condition can live well into their adulthood.

Symptoms of Spina Bifida

The signs of the condition normally depend on the particular type and the severity of the condition. Symptoms normally include:

  • Nerve damage
  • Inability to walk and complete paralysis
  • Problems with the bladder and the bowels
  • Hydrocephalus, a condition whereby fluid fills the brain.
Agent Orange and Spina Bifida

It is believed that descendants of war veterans that served in Vietnam between 1967 and 1971 tend to have a tendency of getting Spina Bifida. This is because they are presumed to have been exposed to Agent Orange, an herbicide that was commonly used in Vietnam during the war period. It is important to note that Spina Bifida affects one in every 1000 American children.

The main active ingredient in Agent Orange is a substance called Dioxin. It is also found in several other herbicides. It is the ingredient that is presumed to have the effect of causing Spina Bifida and cancer among other conditions.

Studies conducted by NAS indicate that of their subjects, those that have a history of being exposed to herbicides tend to report cases of central nervous system disorders, Spina Bifida included, than those that are not. The organization has however concluded that there isn’t enough evidence to show that there is a direct connection between exposure and the defect in offspring.

Benefits of children with birth defects

Children that suffer from Spina Bifida are eligible to receive VA benefits if they meet the following criteria.

  1.  Children or offspring of war veterans that served in Vietnam between 1962 and 1975.
  2. Offspring of Veterans that were in or near the Korean demilitarized zone between September 1967 and august 1971.
  3. The child must have been conceived after the first time that the veteran entered the said zone.

Children that fall under this category qualify for support and vocational training. In case you have a child that might be eligible for these benefits, you can assist them by filling out the appropriate forms and getting them the medical and other assistance that they may need.

It is important to note that Spina Bifida is more often than not a permanently disabling disorder. It is therefore very important to get all the help possible to help manage it and any diseases that result from it.



When Is Enough Enough?

My coverage of the VA’s failure of providing care for kids with spina bifida has been shocking.

But what has shocked me more than the VA antics is the lack of options for Honey Sue.

In law school, professors teach students that you can either fix the system through the courts or through legislature.

But what if both systems tell you to jump off a cliff? That is the only conclusion I can reach when I talk with Ron Nesler about his battle against the VA on his daughter’s behalf.

Honey Sue has had two Congressional hearings over her health care debacle.

Yet, the VA Regional Office in Denver continues to throw up roadblock after roadblock.

The most recent roadblock was a VA denial of Home Care from a hired gun. VA hired a former VA employee turned Independent Medical Examiner (IME).

IME’s are generally hired by insurance firms to deny disability claims like Workers Compensation.

How is that? VA hired a doctor to come in an deny Honey Sue health care despite her own doctors telling the VA that she desperately needs they care.

At this point, the Senate Committee on Veterans Affairs is investigating. Last week, VA general counsel told Ron that everyone in the VA knows about Honey Sue Newby, and that Ron needs to stop because no one cares.

Sad. Nonetheless, we all plan to fight on. This, after all, is not about just Hone Sue. It is about the 900 kids who were harmed by their parents’ contact with Agent Orange.

And taking it a step beyond that, we are not just working for them. We are working for all children of veterans who have birth defects connected to military service.

We are fighting for our country to stop acting like a spoiled child – crying to get its way and refusing to clean up its messes when its spilled the milk.

Here are some highlights from the Honey Sue File. Let’s get after these pricks and force them to follow the law, come hell or high water.

Happy post-Easter.

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  1. Congress and VA deny that we were exposed to A.O./Dioxins before and after 68-71. For over 20 years after the use of A.O., many of us veterans were exposed to dioxins along the Korean DMZ. Feds even admit that the Dioxins reside in the soil/ground for decades. But won’t admit we were exposed and are now sick from it, and in cases are children are suffering birth defects also….

    Nothing new in getting f–ked here, guess should be use to it! Democrats and Republicans don’t care at all! If this is exposed, cut into the funds they want to abuse.

  2. A government that is not accountable to the people can only be called tyranny, even if it is due to incompetence.

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