New Harmony, Indiana:

UPDATE on Honey Sue as of 05 May 2013.

On the positive side, Honey Sue is recovering from her recent cardiac and/or neurological events (doc’s are not sure which) and is getting stronger daily. Her mom Suzanne and I are thrilled to see the cheerful, childlike, good natured Honey Sue that we love so much reemerging from from the Hell she has recently been through.

 On the down side, keeping her blood pressure in line continues to require some pretty heavy medication. We are sad that she needs the medication, but grateful that we are able to provide it for her. In our family, we check everyone’s blood pressure each day, 0nce at least, if not twice. Prior to the recent health care crisis, Honey Sue has never in her 41 years exhibited high BP. But, now, without the medication it zooms up to frightening levels.

 We are told by the docs that there is some chance that this may abate. We must just wait and see.

 We believe that Honey Sue was badly damaged in this regard by the VA’s years of foot dragging on providing her the health care intended for her in the original 1997 legislation. Our family blames this inhumane delay on Lisa Brown, Harold Bailey and Kevin Jobes at the Denver, Colorado VA Spina Bifida Program. We charge those VA Big shots with fighting against obeying federal law for years to the great injury of the A/O Spina Bifida children, such as Honey Sue.

 Another big plus in Honey Sue’s life is that she is now, as of the last week of March, 2013, actually receiving the physical and speech therapy to which she is been entitled since 1997.

On the down side of the therapy, we already knew that Honey Sue’s left arm and hand had atrophied from the lack of therapy, but now we are learning from her therapists that her left lower extremity is also atrophied from the same lack of therapy. We are praying that the therapy, better late than never, can turn around this loss of use of the two limbs.

 For years Honey sue was unable to fight her way past Lisa Brown, Harold Bailey and Kevin Jobes at the VA Spina Bifida Program to obtain this care. But, they have finally relented and are providing this care in home for Honey Sue. This is hugely beneficial for her, and has greatly increased her morale. One of the first questions she asked one of the the therapists was, “Do you think that I can get better?” The therapist told her that of course she could get better, and this was the first time that Honey Sue has been given that kind of hope.

 Our family credits journalist Ben Krause, Executive Rick Weidman at the VVA and US Senator Joe Donnelly of Indiana for forcing the VA to obey federal law by providing this therapy for Honey Sue.

For years, Lisa Brown, Kevin Jobes and Harold Bailey at the VA Spina Bifida Program in Denver, Colorado,  either rightly or wrongly, have road blocked  Honey Sue from receiving the health care she so badly needs.   But, after Ben krause of WWW.DISABLEDVETERANS.ORG began to hammer them, they finally relented and agreed to provide the in home therapy just two weeks ago. 

 Ben had help with putting the pressure on the VA Spina Bifida Program. He was assisted by Rick Weidman at the Vietnam Veterans of America (VVA) and by the staff of Senator Joe Donnelly of Indiana. There was also help in this effort from a few other folks, who out of fear of VA reprisal, elect to remain anonymous. Our family is deeply grateful to all who helped Honey Sue to receive this therapy.

 The mention of Senator Joe Donnelly of the state of Indiana reminds me of the best thing that has happened to Honey Sue lately!

 The original Spina Bifida legislation was passed in 1997, but the VA refused to put it fully into effect for the A/O kids.

 In 2007, Congressman Brad Ellsworth of  Indiana sponsored HR 5729 which was intended to force the VA to obey the 1997 A/O Spina Bifida legislation. That 2007 law was passed, but the VA administrators, such as Lisa brown, Harold Bailey and Kevin Jobes, were still able to find loop holes to avoid obeying the intent of the law.

 Now, in 2013 comes Senator Joe Donnelly, who has introduced S 832 in the US Senate. S 832 is once again intended to force the VA to  obey existing law concerning health care for the Agent Orange Spina Bifida children, such as Honey Sue.

 But, this time around, Senator Donnelly can put to good use the knowledge gained in our years of experience in this matter.  We have good reason to hope, that Senator Donnelly’s new legislation, S 832, will finally force the VA to obey the law! 

 We believe that this time around, there will be no loop holes for Lisa Brown, Kevin Jobes and Harold Bailey at the Denver Colorado VA Spina Bifida Program to use to deny the A/o kids the health care that has been the intent of Congress since 1997.

 In short, Honey Sue is in much better physical and emotional condition than she has been for a few months. She is receiving more (but not all) of the health care intended by Congress than ever before, and it appears we may finally and very soon  be able to force Lisa Brown, Kevin Jobes and Harold Bailey at the Denver VA Spina Bifida Program to provide all of the care intended by Congress to Honey Sue and the A/O kids!

RON NESLER — Independent Veteran Advocate

Honey Sue at Hat Social

If you speak with your Congress person, be sure to mention Honey Sue and the A/O Spina Bifida children.