About Us
Faced with the emotional strain and financial expense of caring for children with spina bifida, parents in a number of New Jersey communities formed self-help groups in the early 1970s to share information and support.
In 1982 the Spina Bifida Association was formed as a coalition of these groups. After an exhaustive needs assessment in the 1990s, the services of the Spina Bifida Association were expanded.
In 2000 the Board of Directors voted to expand its outreach from New Jersey to the Tri-State Region (New Jersey, Metropolitan New York and southern Connecticut).
The Spina Bifida Association of the Tri-State Region (SBATSR) is the only organization dedicated exclusively to serving approximately 7,000 individuals plus innumerable family members who are living with spina bifida in this region.
The mission of the Spina Bifida Association of the Tri-State Region is to empower the lives of people with spina bifida and promote the prevention of spina bifida through advocacy, education, collaboration, public awareness, research and programs.
Current project initiatives include the Family Support Program of in-home nursing coordination and social services, innovative telegroups and teleconferences providing support and information in a format easily accessible from home, educational conferences for families and professionals, social development and recreational programs, and an educational campaign on the prevention of spina bifida.
SBATSR is a contract agency of the Department of Human Services, Division of Developmental Disabilities.
Programming includes advocacy, networking and legislative efforts, and limited financial assistance through the Special Medical Needs Fund for families that incur extraordinary non-reimbursable medical expenses. Assistance is provided for a myriad of issues including: supportive housing, transportation, driver education, vehicle modification, home accessibility modifications, insurance, recreation and respite, and scholarship funding.
The National Spina Bifida Association has frequently recognized SBATSR for our innovative programs to families and individuals with spina bifida as well as for the professionals serving them. SBATSR was chosen in 2005 as one of three national pilot sites for TEAM – a unique mentoring program for teens with spina bifida. The Health Promotion Program began in 2006.
While SBATSR is committed to specialized service to people with spina bifida, collaboration with other agencies promoting similar goals for people with other disabilities enhances the comprehensive supports possible for all individuals and families.
Additionally, a unified voice in legislative matters and other issues has enabled us to support and obtain necessary programs and services. To this end, the Spina Bifida Association collaborates on projects of mutual interest with other agencies and organizations.
Developing local resources that enable individuals and families to live successfully within their community is of primary concern to the Spina Bifida Association. Education, training, networking, collaboration and other supports as requested by individuals or families assist people with spina bifida to become fulfilled, productive members of their communities.
Awards
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