Family Support

For over 30 years, SBRN has been providing Family Support Services to thousands of families with Spina Bifida and other disabilities, addressing crisis management and basic needs. SBRN staff go to homes, schools, medical visits, or wherever needed to address immediate needs. We help navigate families through painful medical decisions and procedures, financial quagmires, and academic issues to ensure children, adults and families thrive. We also hold innovative tele-groups and teleconferences providing support and information in a format easily accessible from home. Staff also provide educational trainings for school staff and others, and provide resources for medical professionals, schools, and vocational programs for special needs populations.

We provide individualized support services in the home and community, including care coordination to improve overall health outcomes, and trainings by nurses on how to manage issues related to physical disabilities. For example, our nurses will go to homes to work with adults, children and their families on managing continence issues, which is an issue common among those with paralysis. Often, these issues are stressful and uncomfortable for the individuals and inhibit them from participating in employment or activities. Our staff helps them to develop a plan and assists them with the skills and tools needed to achieve their goals. Our services are geared towards empowering children and adults to maximize their independence and increase their ability to participate in school, work and community activities.

Can you or someone you know benefit from our services?

Support services are specifically tailored to meet the needs of the individual and the family involved and may include, but are not limited to, assistance with:

*Continence training*

*Skin integrity*

* Helping to prepare for doctor’s visits*

* Follow-up instructions from physicians*

*Healthy living & weight management*

*Dealing with a disability at school*

*Accessing community services*

*Transition planning*

And many other issues related to living with

physical and cognitive disabilities.

Our Family Support Program is funded, in part, by the NJ Division of Developmental Disabilities“> (DDD). DDD determines who is eligible to receive services based on a functional assessment. To request an application packet contact the DDD Intake Coordinator at the Community Office“> nearest you.

For further information, please contact your Family Support staff person or our Central Office at 908-782-7475.

Strive for Independence Program

Does your child struggle with incontinence due to physical disabilities?

Is it affecting their confidence?

Many children living with paralysis experience incontinence issues, which need to be managed to prevent secondary issues such as infections and kidney damage. For many children, these issues affect them socially as well and they may be reluctant to participate in activities due to concerns over incontinence. The Strive for Independence Program can help overcome these issues so your child can live a more active, social and independent life. 

Our program provides training to achieve bowel and bladder continence for children with physical disabilities, and for their caregivers, including school personnel, in order to reduce secondary medical issues, and increase independence and social comfort.

 What Does This Program Provide?

Training caregivers on how to catheterize their child
Training children and youth how to self-catheterize
Helping children and caregivers understand and set up supplies
Assistance with bowel management programs
Instruction on diets – what foods can help and which to avoid
Information on medications
Instructions on how to check for skin breakdown
Care Notebooks:

SBRN staff will also work with the child and caregivers to develop an individualized Care Notebook, which will coordinate personal and medical information, resources, appointments, descriptions of abilities, and more. These notebooks keep important information in one place for easy referral for individuals, caregivers, and medical and school personnel. (They are available for adults as well.)

This program is supported in part through a Quality of Life grant from

the Christopher & Dana Reeve Foundation