FLEMINGTON—Over 7,000 people in New Jersey with spina bifida, the most common central nervous system birth defect in the world, currently rely on a handful of part-time staff at a small organization in Flemington.
But beginning in July, a switch in state funding will cut some of the services the organization provides—services that are almost impossible to get elsewhere and crucial to the emotional health of people with spina bifida.
For over 30 years, the Spina Bifida Resource Network (SBRN) of Flemington has administered specialized care as the state’s only spina bifida organization.
Spina bifida occurs during embryonic development when the spinal cord fails to close, and symptoms range from difficulty walking to complete paralysis. Those with spina bifida require not just physical treatment, but educational and emotional support. This is where SBRN steps in.
“Without both of those cares coming in a coordinated manner, you won’t get that holistic treatment,” David Giannetto, former Chairman SBRN Board of Directors said in a video on SBRN’s website. “Interaction between medical needs and social needs of the individual are so interrelated. They have specific needs, and that is what the network specializes in.”
Christina Knorr, a student at Raritan Valley Community College, helps others at SBRN who share her condition. She started in 2009 and spends so much time there that she was given the nickname “The Volunteer.”
“She’s our best volunteer by far,” said Roberta Kestenbaum, Executive Director of SBRN. “She can be shy, but volunteering really brings her out.”
Knorr says she enjoys volunteering at SBRN because they go above and beyond for their clients. “I feel connected to the people there,” Knorr said. “Nobody feels like they’re working just for a pay check.”
Knorr said that people with spina bifida often have perceptual or cognitive difficulties. As a result, she has had trouble learning in a classroom if it is not from a specialist.
This makes it difficult for her to learn in college because there is no Individualized Educational Plan (IEP), a legally binding document for public schools that addresses a child’s unique learning issues using specific educational goals.
“In one class my professor pulled me aside and told me that my grades didn’t reflect what I knew,” Knorr said. “I’m better at taking tests orally. I freeze on written tests. Even though the professor was ok with it, college rules won’t let me take the test orally.”
Knorr says this is why the emotional services that SBRN provides are important; it allows those with Spina Bifida to talk to each other and feel good about themselves.
Knorr also participates in recreational programs at SBRN as a client, including their empowerment retreats on the first weekend in December at the Hyatt in Morristown. This is where she first learned adaptive self-defense.
“I used to think I was screwed because I’m in a wheelchair,” Knorr said. “Then I learned I can use my crutches, I can use my arms and I can bite. I can actually do something.“
Cut in services
SBRN began as a grassroots effort in the early 1970s when a number of NJ communities formed self-help groups to share support for spina bifida. Now SBRN is a state-funded organization with trained professionals, including two nurses and two social workers, and they often collaborate with other agencies with similar goals.
Children ages 1-17 with spina bifida had average medical expenditures 13 times greater than children without spina bifida, according to Centers for Disease Control and Prevention Data from 2001-2003. This creates emotional along with financial difficulty for families.
One way SBRN addresses emotional problems is through the Family Support Program, where nurses and social workers go into family homes and train them to deal with aspects of spina bifida.
Knorr said many families have come to depend on this program. According to SBRN’s website, this service is “designed to promote interdependence, independence, productivity and integration of people with disabilities into the community.”
SBRN’s services are funded, in part, by the New Jersey Department of Human Services Division of Developmental Disabilities (DDD), which also funds more than 250 other NJ agencies. Currently funding is provided through a contract, in which DDD determines if an agency is eligible to receive services based on a functional assessment.
Due in part to the budget deficit in the State of New Jersey, DDD will start to eliminate contract funding beginning in July. Instead, patients will have to get services through Medicaid. The problem for SBRN is that Medicaid does not cover the services that SBRN has traditionally offered, such as the Family Support Program.
“The switch has its good and bad points,” Kestenbaum said. “But we will be losing money because of it.”
In addition, with the switch their contracts no longer cover services to anyone 18 and under, which involves half their clients. Kestenbaum said that children usually remain clients for their whole lives, creating a close bond between them and SBRN.
“Children are still included and welcome, and we provide services when we can, but unfortunately we no longer receive funding to help us serve children,” Kestenbaum said.
One service not affected by the budget switch are their educational programs on the prevention of spina bifida. SBRN informs women of child-bearing age to take 400 mcg of folic acid every day to potentially reduce the occurrence of spina bifida and other neural tube defects by up to 70%. In 2014 SBRN collaborated with RVCC nursing students on a presentation at the college.
Another service is their recreational programs. One of the most popular is the Ice Skate Social in Hollydell Arena in Sewell, NJ, where clients skate on sleds and wheelchairs in an ice rink.
"It's a blast," Knorr said. "Every year I look forward to this."
Money for these services comes from fundraisers, which SBRN now relies more heavily on. Their next fundraiser will be the “Walk for Empowerment” June 7, 10 am at Colonial Park in Franklin Township. The day will entail food, music, a tricky-tray raffle and a walk to raise awareness for spina bifida. Details and registration are found here.
Featured image caption:
Raritan Valley Community College Student Christina Knorr at the NJ Disability Pride Parade in Trenton in 2013. The Spina Bifida Resource Network participates in the parade every year. Photo courtesy of NJDPP Facebook.