HELPFUL LINKS

RESOURCES SPECIFIC TO SPINA BIFIDA

 

 

  • Spina Bifida Health Information Sheets From SBA -  Available in English & Español, the Spina Bifida Association offers fact sheets for children and adults with Spina Bifida. For Español, click HERE

 

 

  • List of Common Latex Allergy Items (Home & Community) - Click HERE (English) | Click HERE (Español)

 

  • Insights Magazine - Free e-magazine published by the National Spina Bifida Association. 

 

 

 

  • Faces of Spina Bifida Magazine - Free e-magazine that celebrates diversity among people living with Spina Bifida. It's an online community where people chronicle their lives, are inspired, and make connections. 

 

 

  • Camp Rolling Thunder (MedCamp) - MedCamps of Louisiana holds a series of one-week, fun-filled camps each summer free of charge for children in Louisiana facing the challenges of a variety of physical and mental disabilities. These include spina bifida and orthopedic conditions, cerebral palsy, asthma, sickle cell anemia, autism, epilepsy, visual impairment, hearing impairment, speech impairment and those developmentally disabled.

 

LOUSIANA STATE RESOURCES

  • Families Helping Families - Statewide parent support centers that are staffed by individuals with disabilities, parents, and family members of individuals with a disability. A group of families, that through their own experiences, promote advocacy, and are committed to reaching out to other families, all across the state, that have a family member with a disability. They offer peer-to-peer support, information and referrals, and on-site and online learning opportunities.

 

  • Louisiana Parent Training and Information Center  - A program of Families Helping Families of Jefferson that offers assistance and resources pertaining to school issues, in-person and online training on disability and educational related topics, and educational based conferences.

 

  • Bayou Health Help Line - This helpline is for individuals and families of children and youth with special health care needs who have questions, issues, problems with denial of services, or concerns about accessing the care they need through their Bayou Health Plan. Assistance includes help with dental care issues under MCNA Dental and through Magellan for children enrolled in the Cordinated System of Care. (CSoC) 

 

 

  • EarlySteps - Louisiana's Early Intervention Specialist for newborns - 36 months

 

 

  • Children's Special Health Services (CSHS)  - A principal public agency that is insuring that children and youth with special health care needs have access to health care services designed to minimize their disabilities and maximize their probabilities of enjoying independent and self-sufficient lives.

 

  • CSHS Family Resource Center - Located at Children's Hospital New Orleans, the Family Resource Center provides parent-to-parent and youth-to-youth support to assist families with children and youth with special healthcare needs access needed community and state resources. 

 

  • Developmental Disabilities Services Directory - The Office for Citizens with Developmental Disabilities provides supports and services through a variety of locations throughout the state to support the dignity, quality of life and security in the everyday lives of people with developmental disabilities and their families, acting as the Single Point of Entry.

 

 

  • Advocacy Center of Louisiana - A private, non-profit corporation designated by the Governor as Louisiana's protection and advocacy agency for persons with developmental disabilities, severe disabilities, mental illness, and for beneficiaries of U.S. Social Security Administration, and as the Client Assistance Program for clients of the Louisiana Division of Rehabilitation Services.

 

  • Legal Status in Louisiana Handbook PDF - Information from the Advocacy Center, for persons with disabilities, on Intradiction, Continuing Tutorship, Power of Attorney, and Representative Payment. ​​

 

  • Louisiana Developmental Disabilities Council - Developmental Disabilities Councils receive federal funds to conduct advocacy, capacity building and systems change activities to promote the self determination, independence, productivity, integration and inclusion of people with developmental disabilities in all facets of community life.  There is a DD Council in every state and U.S. territory.

 

  • Louisiana Council's Action Network - LaCAN (Louisiana Council's Advocacy Network) furthers the Council's mission by advocating for policies and systems that support inclusion everywhere people learn, work, live, and play.  LaCAN advocates for service systems that support children and adults with disabilities to live in their own homes and be fully-included and participating members of their local schools and communities.

 

  • Louisiana Rehabilitation Services (LRS) - LRS assists persons with disabilities in their desire to obtain or maintain employment and/or achieve independence in their communities by providing rehabilitation services and working cooperatively with business and other community resources. 

 

  • LSU Human Development Center - The Mission of the Human Development Center (HDC) is to provide leadership and innovation in interdisciplinary education, community service, research, and to disseminate information to strengthen and increase the capacity of local communities to support and include individuals with [developmental] disabilities and their families in all aspects of life in the community. Initiatives include Transition and Employment, K - 12 Education, Health & Clinics, and Early Childhood.  

 

 

FEDERAL AND NATIONAL RESOURCES

 

 

 

 

 

 

 

 

NOTE: Information listed above is for informational purposes and should not be implied as an endorsement of any agency, organization or resource. While we always try to update this page with current, up-to-date information, we are not perfect and information and web links are constantly changing. 

 

Help us empower children, adults and families of those affected by spina bifida. For over 20 years, SB of Louisiana has responded to the needs of our families and continue to be committed to securing a better life for those who live with spina bifida because they deserve nothing less! 

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Contact Us  

 

Telephone: ​(504) 737-5181

Email: sbla@sblouisiana.org

Mailing Address: 

P.O. Box 1346 

Kenner, LA 70063

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© 2019 Spina Bifida of Louisiana