Wednesday 22nd August 2018

TO VA SECRETARY CONCERNING VA SPINA BIFIDA PROGRAM

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TO VA SECRETARY CONCERNING VA SPINA BIFIDA PROGRAM

Dear Secretary Wilkie,  ………………………………….

I have read about your family back ground, and I read your statement, that a veteran should not need a team of lawyers to deal with VA. Those words are music to my ears. In the past, I have needed a team of lawyers for every interaction, I have had with VA for both myself and my profoundly handicapped A/O Spina Bifida daughter Honey Sue Newby.  I also do volunteer work trying to help veterans who can’t get a lawyer in navigating VA. I take you at your word and wish you the best in changing VA.

I am writing you about irregularities in the VA Spina Bifida Program. My family was instrumental in lobbying for the legislation that created the Spina Bifida Program benefits outlined in 38 US 1803. My stepdaughter and ward, Honey Sue Newby, receives the full menu of benefits provided in 38 US 1803. She has received those full 1803 benefits since 2012. She has been a Level III Child since 1992. Getting those benefits from VA was a heartbreaking, soul crushing struggle. The reason my daughter finally received the benefits is, because we were able to afford and arrange the team of lawyers you mention. We were lied to, stalled and punished with massive data dumps in our battle to get the benefits for our daughter. A journalist who was covering our fight with VA was threatened by a VA employee named Vincent Guy. Two attorneys have firsthand knowledge of that, and I can put you in touch with them.  I tell you this to demonstrate that all is not as it should be, in the Spina Bifida Program.

The 38 US 1803 benefits were legislated in 2008. Our legal struggle to get the benefits for our daughter dragged out to 2012.  The Spina Bifida Program only released the benefits to our daughter, because of a OGC finding in 2012 that forced them to release the benefits to Honey Sue. And as I said before, our daughter now, since 2012, receives full benefits under 38 US 1803.

The problem is, that after all these years, our daughter remains the ONLY client of the SB Program to receive all of these benefits. Let me say that again, the 1803 benefits were legislated in 2008, and as of today, 26 July 2018, our daughter Honey Sue is the ONLY client of the SB Program receiving the full 1803 benefits.

There is no meaningful outreach by the SB Program.  And worse, after all these years, some clients of the SB Program are still being told by officials at the Denver office of that program, that the benefits my daughter receives DO NOT EXIST. Let me repeat that, my daughter receives full 1803 benefits, she is the only SB Program client who does, and I have been contacted by SB Program clients, who were told that the 1803 benefits do NOT EXIST in the Spina Bifida Program. I can back up that assertion.

One of the SB Program clients, whom I have tried to assist, was a profoundly disabled child of a Vietnam vet, who was a client of the Spina Bifida Program from 1992 until her death in 2017. Despite my assistance and that of an attorney and that of a high-level executive in the health care industry, she was never able to access even one scrap of the 1803 benefits. I have many of her health records, and a glance at them would justify full access to ALL 1803 benefits. Despite years of struggle, she died without any of those benefits. She was REPEATEDLY told, that the 1803 benefits my daughter receives did not exist. Her parents have volunteered to tell you her story if you will take time to speak with them.

I am working with another client of the Spina Bifida Program, who has for 15 years been a Level III rated client, but is unable to access most of the 1803 benefits. She was recently told she, she would receive 40 hours of Homemaker and Home Health Aid Care through the SB Program, but before the Program was even able to locate a private provider for her, they sent her a letter saying her care was being reduced to 12 hours per week or less. It is my understanding, that her attending physician is willing to attest, that she needs a MINIMUM of 40 hours per week, and probably more. I have told her to get a letter from her doctor, and we will try again.

The same client in the above paragraph also has desperate need of a private social worker to help her manage her care. The SB Program will not discuss that with her. A social worker is part of the care, that my daughter receives. The reason that the SB Program will not discuss a social worker with this client is because the SB Program employees do not have the skill or knowledge to arrange for a private social worker. I ran into this same wall with my daughter’s care, but I found a high-ranking executive in the health care industry, who was willing to assist VA in finding my daughter a social worker willing to work for VA. He had my daughter a social worker within days. This same high level executive is now retired, and he has volunteered several times to assist the SB Program pro bono in locating social workers and in home care givers nation wide. The SB Program will not even do him the courtesy of responding to his offer of pro bono help.

The problems discussed above are VHA shortcomings in providing care and benefits for the A/O Spina Bifida Children. I have MANY more examples, that I can offer.

There are also grievous short comings in how VBA treats the applicants for the Spina Bifida Program.  For example, I worked with one SB Program applicant, who was told by Melanie Renee Murphy the Denver VARO Director, that he could NOT be compensated for Spina Bifida, unless his Spinal cord protruded outside of the body. Ms Murphy told him that having the spine protrude outside of the body was the definition of Spina Bifida. This is grossly medically incorrect, and I confirmed with VBA Under Secretary Allison Hickey, that it was also NOT the VA definition of Spina Bifida. That VA used the actual medical definition. I have come across this same error with other SB Program applicants. It is rooted in a misunderstanding by the raters of the fact, that Spina Bifida Occulta is not compensated. The misinformed raters mistakenly take from that, that Spina Bifida is not compensated, unless the spinal cord visibly protrudes outside of the body. Medically, Spina Bifida Occulta means without symptoms or ill effects, not that the spinal cord does not protrude from the body. This desperately needs to be clarified with the raters who rate the Spina Bifida claims.  And, they should go back over claims, that were denied, because the spinal cort was not protruded outside the body.

There is also the question of Diagnostic MRI’s to either diagnose or rule out Spina Bifida in claimants.  The ONLY way to diagnose Spina Bifida is with a contrasted MRI read by a specialist. Many applicants have no financial means to get a diagnostic MRI on their own. It is my position, that if an applicant files a Spina Bifida Claim, the VA is obligated to provide a contrasted MRI at a private provider to prove or rule out Spina Bifida. Former VBA Under Secretary Allison Hickey, backed me up on this. But, neither Carolyn Clancy nor Melanie Renee Murphy approved of Hickey’s decision.  Ms. Murphy was in fact quite surly about me going over her head to Hickey.

The question needs clarification: is the VA obligated to provide professional contrasting MRI’s from private providers at the applicant’s geographic convenience to any impecunious applicant, who needs them to get their claim approved?  That needs a clear answer, that can be applied consistently. Right now, it is an applicant by applicant battle, with no clear written ruling.

I have other issues to raise on behalf of the children either enrolled in or applying to be enrolled in the VA Spina Bifida Program, but I will delay that, until I see if you are responsive to this letter.

My only interested is justice for Vietnam vets and our families. I can back up everything I say, with confirmation from honest VA employees, attorneys, one ex member of Congress, one retired Congressional Legislative Assistant, the Executive Director of a major veterans’ organization, SB Program clients and family of SB Program clients.

Before bringing this to the attention of you, the VA Secretary, I have tried registering complaints to every hot line VA has, including the new one created for President Trump. I have also attempted to communicate with the VAOIG from bottom to top. I have tried communicating directly with the VA Spina Bifida Program, but they do NOT ACKNOWLEDGE any communications involving accusations of failure or wrong doing.  I have even tried to get VA Chaplains help me access someone of authority.  Everyone either ignores me, or at best, tells me that these are “not the sort of issues” they can address. Please understand, I am NOT trying to start out at the top.  I have truthfully exhausted every possible avenue of making my information and questions known to higher ups at VA. I have over a decade involved in this. Most people, who know me, agree, that I am very knowledgeable of the VA Spina Bifida Program.

If I am truthful and accurate, which I am, then the issues I raise should be addressed. If I am lying or delusional, as some officials at the SB Program and the Denver VARO would claim, then I should be made to desist in my claims.

Thank you very much for taking the time to read my letter. I am hopeful, that you will communicate with me on these issues, and that some positive changes will result.

 

Sincerely

Ron Nesler

 

 

 

 

Ronald E. Nesler

PO BOX 12

New Harmony, IN 47631

100% Service Connected Disabled Vietnam Veteran

SSG E-6 US ARMY 1967 thru 1975

Battery “B” 6th/32nd Arty 1st Field Force Sept 1970 – Oct 1971

Guardian Level III  A/O Spina Bifida Child in VA SPINA BIFIDA PROGRAM

26 July 2018

Robert Wilkie VA Secretary

Department of Veterans Affairs

810 Vermont Ave Washington DC

 

 

 

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