Spina Bifida Health Care Program Expansion Act

Floor Speech

Mr. ELLSWORTH. I thank the gentleman for yielding.

Madam Speaker, I rise today in strong support of H.R. 5729, the Spina Bifida Health Care Program Expansion Act.

This important issue came to my attention by my constituents Honey Sue Newby and the Nesler family of New Harmony, Indiana. Honey Sue's story is quite heart wrenching. She's a woman who lives with a complicated neurological disorder rooted in spina bifida, and her parents, Suzanne and Ron Nesler, provide her with around-the-clock attendance and care. Ron is Honey Sue's stepfather and, together with Suzanne, serves as her guardian and primary caregiver.

Honey Sue's biological father served 8 years as a marine and completed three combat tours in Vietnam. The VA concedes that Honey Sue's condition is the direct result of her biological father's exposure to Agent Orange, the defoliant and herbicide used by our Armed Forces in Vietnam.

For years the Neslers have attempted to clear seemingly insurmountable bureaucratic hurdles when seeking medical care for Honey Sue. Suzanne and Ron have to provide a letter from the doctor to the VA each and every time that she seeks care that her condition is directly related to her spina bifida. The Neslers have to repeat this routine despite the fact that Honey Sue is recognized by the VA as a level III child. At the VA level III children are eligible to the same full health care coverage as a military veteran with 100 percent service-connected disability.

H.R. 5729 will provide the Neslers and other people facing the same challenges with relief from the tedious administrative burdens by providing the beneficiaries of the Spina Bifida Health Care Program with comprehensive care. No longer will the burden be on the Neslers to prove that Honey Sue's condition and various health ailments are related to spina bifida and therefore Agent Orange. The requirement has been removed.

When this bill is passed by Congress and signed by the President, Honey Sue and the estimated 1,200 children--and, Madam Speaker, that's important to know that this is only 1,200 children with levels I, II, and III spina bifida as caused by a parent's exposure to Agent Orange will receive the same full health care coverage as military veterans with a 100 percent service-connected disability. This bill will give families the peace of mind that their children will have access to attendant care when they are no longer capable of providing for them. I know that this concern is of great importance to the Neslers.

Madam Speaker, the Congressional Budget Office estimates that the VA already provides roughly 90 percent of the comprehensive health care needs of these beneficiaries. In fact, the CBO estimates that the implementation of this program will add around $2,500 per person in 2009. This is a small price to pay, Madam Speaker, to ensure Honey Sue receives the health care she needs and Suzanne and Ron do not have to spend their days navigating their way through a frustrating maze of administrative paperwork.

I would like to thank the chairman, BOB FILNER, and the ranking member, Mr. Buyer, and the very capable staff of the Veterans' Affairs Committee for their leadership on this issue. I'd also at this time like to thank one of my staff in Evansville, Indiana, Emily Hayden, who has worked exceedingly hard to help the Neslers with the red tape that this bill aims to fix. Emily has shown such care and consideration for so many of my constituents that she deserves recognition. I'm proud to have her on my staff.

Madam Speaker, H.R. 5729, the Spina Bifida Health Care Program Expansion Act, follows through on these promises made to our brave servicemembers who have fought for our freedoms.

Source