In 2008 Congressman Brad Ellsworth (D IN-08), who represented New Harmony, Indiana at that time,  sponsored HR 5729 –” The VA Spina Bifida Program Improvement and Expansion Act,”  The intention of this bill was to …….

……………………………………………… was to provide comprehensive healthcare to clients of the VA Spina Bifida Program, such as my daughter Honey Sue Newby of New Harmony, Indiana.  The bill was passed as SECTION 408 of Public Law 110-387 and signed into law by President GW Bush.

For reasons that remain a mystery, the faceless bureaucrats at the VA Spina Bifida Program pushed back against implementing this law.  For five years, the Spina Bifida Program denied these benefits to our daughter. In fact, for those first five years, VA  denied to our family, that the 38 US 1803 benefits even existed.

In struggling to obtain these lawful benefits for Honey Sue, our family was assisted by Congressman Ellsworth’s office, attorneys from the national offices of the Vietnam Veterans of America and private attorneys. But, it still took five years, until 2013, before our daughter Honey Sue received any of the 38 US 1803 healthcare benefits, created in 2008. Honey Sue finally began to receive the 38 US 1803 benefits from the Spina Bifida Program in June 2013, after the VA Office of General Counsel ruled in her favor, forcing the Spina Bifida Program to provide the 38 US 1803 benefits to her.

Since the 2013 VAOGC ruling, the VA Spina Bifida Program has provided Honey Sue with a splendid  package of benefits under 38 US 1803.  The benefits Honey Sue receives from the Spina Bifida Program, include an Indiana licensed social worker to manage her healthcare and protect her rights and her safety.  The Spina bifida Program also provides Honey Sue 24/7 assistance with daily living, (ADL care) as well as in home physical and speech therapists and a visiting nurse to monitor her health.  All of this and more is paid for by the Spina Bifida Program under the authority of 38 US 1803. 

Thousands of other Spina Bifida Program clients are entitled to the same 38 US 1803 benefits as Honey Sue receives.  But, ten years down the road, since the enabling legislation was passed, Honey Sue is still the only one of the thousands of Spina Bifida Program clients to receive any of the 38 US 1803 benefits. Other Spina Bifida Program Clients are still being told by the Spina Bifida Program, that these benefits do not exist. 

Angelica Caye Kuhn is a client of the VA Spina Bifida Program for the past 18 years, and is rated by that program as totally disabled. She has tried for several years to access the 38 US 1803 benefits, received by Honey Sue.  She has repeatedly (and recently) been told by the Spina Bifida Program that the 38 US 1803 benefits do not exist.  Angelica’s close friend, Amie Frost, another long time totally disabled client of the Spina Bifida Program was also told, by the Spina Bifida Program managers, that the 38 US 1803 benefits do not exist.

The 38 US 1803 benefits plainly do exist, as evidenced by Honey Sue receiving them for the past five years.

The questions are:

Why, ten years down the road from the legislation, is Honey Sue still the ONLY client of the Spina Bifida Program receiving any of these benefits?

Why is it necessary for helpless children of war vets to pay an attorney in order to access lawfully legislated VA benefits?

I was recently informed, that within the past two weeks, Kevin Jobes, Project Manager at the VA Spina Bifida Program, told the VHA Client Services office, that in the past ten years, Honey Sue is the only client of the Spina Bifida Program to follow “proper procedure” in seeking the 38 US 1803 benefits.  If that is true, the “proper procedure” needs to be radically changed on an emergency basis.  


Ron Nesler, Vietnam war vet and parent/guardian of a VA Spina Bifida Program client

PO BOX 12 — New Harmony, IN 47631

PHONE 812 682 3740 …………………. Email <> 


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