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Hon. Larry Bucshon, a Representative in Congress from the State of Indiana

Thank you Chairwoman Buerkle, Ranking Member Michaud, members of the subcommittee, for the opportunity to come and speak to you today about my draft legislation, the Honey Sue Newby Spina Bifida Attendant Care Act. 

In April of this year, I was contacted by a constituent from New Harmony, Mr. Ron Nesler, on behalf of his step daughter, Honey Sue Newby. Honey Sue’s father was a Vietnam Veteran exposed to Agent Orange; and she was born with a complicated neurological disorder rooted in Spina Bifida, a congenital condition in which the vertebrae do not form properly around the spinal cord. The Veterans Administration has previously determined Honey Sue’s condition is a direct result of her father’s exposure to Agent Orange in Vietnam and have classified her as a Level III child, making her eligible to receive the same full health care coverage as a veteran with 100% Service Connected Disability

In 2007, Mr. Nesler and his wife reached out to my predecessor, former- Representative Brad Ellsworth regarding two issues they had been experiencing with the VA. The first was an administrative burden requiring a letter from Honey Sue’s doctor explaining exactly how the treatment she sought was related to her Spina Bifida. More often than not, this resulted in the VA denying repayment until additional burdensome administrative procedures took place. For example, Honey Sue needed surgery on her mouth after seizures caused her to grind her teeth to nubs.  The VA originally denied payments for the procedure saying the doctor’s letter did not clearly make the case that  this result was related to the condition. 

Secondly, Honey Sue’s parents are aging and experiencing health problems. Currently, the only long term services the VA will pay for is nursing home care for  individuals like Honey Sue. Nursing home care is both extremely expensive and inappropriate for what Honey Sue needs. Individuals with Spina Bifida have a diverse range of needs.  Although no two cases of Spina Bifida are ever the same, the National Spina Bifida Association confirms the majority of these individuals can live independently if they have the proper habilitative care in order to develop, maintain or restore their functioning.

Former Rep. Ellsworth’s bill, H.R. 5729, was written to address both of these issues and on May 20, 2008 H.R. 5729 was passed by voice vote in the House of Representatives and was later added to S. 2162, the Veterans Mental Health and Other Care Improvement Act of 2008. This legislation was signed by President Bush on October 10, 2008 (Public Law 110-387).

Since then, the VA has recognized and alleviated the administrative burdens, but has not properly interpreted ‘habilitative care’. Title 38 of the U.S. Code defines habilitative care as ‘professional, counseling, and guidance services and treatment programs (other than vocational training under section 1804 of this title) as are necessary to develop, maintain, or restore, to the maximum extent practicable, the functioning of a disabled person.’ Under this language, I believe the VA is misinterpreting the law and its intent as it concerns individuals with type III Spina Bifida who simply need supervisory, or as we put it in the draft legislation- home and community based-care.

The purpose of this draft legislation is to clarify Title 38 to allow individuals with Spina Bifida the appropriate and cost effective care they deserve. The intended result allows individuals to take advantage of home and community based care for those that do not need constant medical care. The term ‘Home and community based care’ is used in the definition of ‘habilitative care’ in section 1915 of the Social Security Act and this legislation is modeled after and aims to create consistency for that definition within VA services.

Again, thank you for the consideration of this legislation. I am happy to answer any questions.