IV 111th CONGRESS 2d Session H. RES. 1664 IN THE HOUSE OF REPRESENTATIVES September 28, 2010 Mr. Smith of New Jersey (for himself, Mr. Stupak, Mr. Burton of Indiana, and Mr. Grijalva) submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Supporting the goals and ideals of Spina Bifida Awareness Month, recognizing the importance of increasing access to health care for individuals with disabilities, including those with Spina Bifida, and raising awareness of the need for health care facilities and examination rooms to be accessible for individuals with disabilities.

Whereas October is Spina Bifida Awareness Month; Whereas the number of individuals living with all forms of Spina Bifida, the Nation’s most common permanently disabling birth defect is estimated by the Centers for Disease Control and Prevention (CDC) to be as many as 166,000; Whereas the risk of Spina Bifida can be reduced by up to 70 percent if women of childbearing age consume 400 mcg of folic acid every day, prior to becoming pregnant; Whereas there are 65,000,000 women of childbearing age in the United States, all of whom are potentially at risk of having a pregnancy affected by Spina Bifida; Whereas an additional 1,500 babies are born each year with Spina Bifida; Whereas Spina Bifida is a complicated condition, adversely impacting virtually every organ system and requiring multiple clinical specialists to provide life-long quality medical and psychosocial care; Whereas the Spina Bifida Association recently announced that one of its volunteers, Debbie Blanchard, a woman who lived with Spina Bifida for 55 years, died from a late stage diagnosis of cervical cancer stemming from her inability to find a health care provider in her community who had an examination table that would lower to the level necessary for her to comfortably and safely transfer from her wheelchair to the examination table so she could be screened for cervical cancer; Whereas according to the Census, approximately 1 in 5 United States residents live with some sort of physical disability; Whereas more than 54,000,000 people in the United States report some level of disability and approximately 35,000,000 of those are classified as having a severe disability; Whereas an estimated 11,000,000 individuals age 6 and older need personal assistance with every day activities, including taking a bath or shower, preparing meals, and getting around the home; Whereas 5 percent of the United States population over age 15 uses a wheelchair or similar device, cane, crutches, or walker; Whereas studies have found that individuals with disabilities have significant difficulty in accessing routine and specialized health care and that numerous barriers exist for such patients; Whereas approximately 1 in 3 women with disabilities report being denied services at a physician’s office solely because of their disability; Whereas research shows that women with disabilities are less likely to have Pap smears and mammograms, are more likely to be diagnosed at a later stage of breast cancer, and are less likely to receive standard treatments and have worse outcomes; Whereas individuals with disabilities report that one of the leading barriers to accessing necessary health care is the inability to find an accessible health care provider and identify providers who understand how to treat individuals with disabilities and are willing to have them as patients; and Whereas organizations representing individuals with disabilities report that their constituents need more and better information regarding accessible health care providers in their communities and additional support and resources to help ensure they receive the care they need and deserve: Now, therefore, be it

That Congress— (1)supports the goals and ideals of Spina Bifida Awareness Month to provide a special opportunity to raise awareness of the ongoing, life-long medical and psychosocial needs of individuals with Spina Bifida and highlighting efforts to prevent Spina Bifida through daily folic acid intake by women of childbearing age, prior to becoming pregnant; (2)urges Federal efforts to improve health provider awareness of the need for accessible health care facilities for individuals with disabilities, including such activities as developing and disseminating informational tools to raise provider awareness of the physical challenges experienced by patients with disabilities; and (3)urges the Secretary of Health and Human Services to establish a National Advisory Committee on Access to Health Care for Individuals with Disabilities to ensure interagency coordination of efforts to improve access to care for individuals with Spina Bifida and other disabilities.