Spina Bifida Texas (SBTX) Programs and Services

 

NEW PARENT SUPPORT- Because the diagnosis of Spina Bifida can be overwhelming for new families, we provide them with a “New Parent Packet” which contains information on medical issues associated with this complex disability as well as with information on community resources and funding for the families. Volunteer veteran parents meet with the family and give them the much needed encouragement and support during this trying time. Parents are also encouraged to participate in our English and Spanish Speaking support groups, which promote the sharing of information, community resources, and independent living.

 
RESOURCE LIBRARY- SBTX continually updates and stocks this library with information on the many issues associated with Spina Bifida.  These books and publications are available at the SBTX office for families who wish to learn more about this complex disability.

 

LENDING CLOSET-SBTX has donated medical items for families in need.  Items available include diapers, catheters, and other medical supplies and equipment. 

 

SELF ADVOCACY SUPPORT- SBTX encourages families to be advocates for their child’s education by assisting them through the Admission Review and Dismissal (ARD) process at their respective school district.     The ARD meetings are important in determining the eligibility for special programs and educational needs of the student.  These meetings are extremely important in determining the scholastic success of students, but many parents are unprepared or unsure of ARD process. SBTX staff will often advise and attend these meetings with the families. 

 

QOL & SCHOLARSHIP OPPORTUNITIES- We also have a quality of life enhancement program that includes sponsorship opportunities to attend camp and participate in sports and arts programs for individuals with Spina Bifida.  SBTX provides young adults with scholarships so that they can pursue higher education opportunities at either an accredited college or trade school.

 

INDEPENDENCE TRAINING- Our “On the Right Tract” program provides parents and professionals with tools that include step by step instructions to help teach children about personal hygiene and self-catheterization skills, an area of independence training that is always hard to accomplish within the Spina Bifida community.  Also provided are anatomically correct male and female models that children can use as visuals and to practice inserting catheters correctly.

 

FASHIONABLE- In its seven years of existence FashionABLE continues to be embraced by the community.  What started out with one class of 16 students participating from Jefferson High School has grown to include 4 high schools, 80 designer/model pairings and over 400 attendees at this year’s FashionABLE show, where the design students were eligible for scholarships and prizes for their designs.  The program benefits both the models, who receive a customized outfit and a boost in self-esteem, and the student designers, who learn more about disabilities and improve their skills while helping others. 

 

SB CONFERENCE- This full-day conference contains valuable information on all aspects of this complex disability.  Doctors, medical professionals, as well as educational specialists share their vast knowledge with the families.  Medical topics covered include neurological, orthopedic, and urology.  Also covered are independence issues, learning disabilities, and physical fitness opportunities in the community. 

 

PREVENTION AWARENESS- In addition to our work with families,  SBTX is actively involved in prevention outreach through our Folic Acid Awareness initiatives.  Spina Bifida occurs in 6.3 of every 10,000 births in Texas, almost twice the national average. This birth defect that develops in first 28 days of pregnancy results in a malformation of the spine and spinal cord.  Since it happens so early in a pregnancy it usual affects the development of other major systems in the body.  Babies born with Spina Bifida face complications that include; paralysis, orthopedic challenges, hydrocephalus, learning disabilities, as well as bowel and bladder incontinence issues.  It is extremely important to educate women about the benefits of 400mcg of folic acid every day.  This healthy choice can reduce their risk of having a pregnancy affected by a neural tube defect by up to 70%. An easy to to ensure you're getting enough folic acid is to take a multivitamin with folic acid in it (CDC, 2015). Our outreach efforts include participation at area bridal and health fairs.  We distribute multivitamins that contain folic acid as well as bags and mirrors with our folic acid message.  SBTX also provides gift bags to brides during the annual mass wedding ceremonies on Valentine’s Day.  Our outreach efforts also include presentations to high schools, WIC clinics and women’s groups regarding the importance of folic acid in a woman’s daily regimen. For more information on folic acid and its role in Spina Bifida prevention please visit the CDC site.


 

 

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