July 6, 2022

Member Spotlight – Spina Bifida Association of Northeastern New York

SBANENY uses a special holistic approach in assessing and providing services.  Executive Director, Julia Duff, explains that “In the world of disability services, a variety of service agencies focus on one area of need (employment, housing, benefits) and/or have eligibility requirements (income level, place of residence, functional abilities, insurance). Our office serves all individuals impacted by Spina Bifida (individuals, family members, service providers) statewide. We also consider the full needs of an individual and provide the appropriate support to achieve their goals without restrictions.” 

SBANENY tends to supplement the services available and bridge the gap when a person cannot access one need due to another. For example, a consumer who cannot access housing due to limited disposable income and may need to find employment or they may need help researching affordable and physically accessible housing options within their financial limit without losing their insurance and benefits. SBANENY  looks at the full picture and assist with connecting the dots, setting priorities, and supporting consumers to gain the information and resources they need to achieve their goals.  

The Spina Bifida Association of Albany/Capital District Inc. (Currently DBA Spina Bifida Association of Northeastern New York (SBANENY) and in the process of DBA Spina Bifida Association of New York State) was founded by parents of children living with Spina Bifida in 1993. We will be celebrating our 30-year anniversary next June! 

SBANENY founders are from the Capital Region. Many remain involved as Board members, committee members, volunteers, donors, and program participants. This keeps them rooted in their family first foundation and focused on their mission to support individuals living with Spina Bifida and those impacted by Spina Bifida. 

SBANENY is the sole affiliate chapter of the National Spina Bifida Association in New York State. As a result, they serve individuals and families impacted by Spina Bifida statewide. For this reason they have changed their name to Spina Bifida Association of New York State (SBANYS)! 

A key motivator for everyone who works for and with the association is when they hear from the people they serve about how grateful they are to have the support and guidance from an agency who understands Spina Bifida, is responsive, and does not place limits on the ways we are of service. There is SO much to navigate when you are living with Spina Bifida – the medical needs, comorbid diagnoses, physical inaccessibility and stigma, and the lack of inclusion and representation in insurance, benefits, employment, education, transportation, housing… the list goes on. “If we can take one thing off their plate, we feel we have done something right. And when our consumers share that back with us, it is the best feeling.”   

As a nonprofit organization, SBANYS has seen the long-term benefits of the networking opportunities such as Business After Hours hosted by the Capital Region Chamber.  They have made great connections with companies providing services to meet their current needs and gain corporate partners who align with their mission.  They have found that it has been a great way to network efficiently!