Spina Bifida Program Resources

The Spina Bifida Program Advisory Board collaborates with the clinical team to advocate for patients and empower and educate families. 

In this video series, Ciarlo shows how individuals with spina bifida can build independence. Topics include: navigating stairs, sitting, self-care, moving with crutches, and exercise.

Got Transition® is a federally funded center that offers many resources for young adults and their families to support them in their journey as they transition from pediatric to adult healthcare. Access resources here.

Learn how we support children seen in the Spina Bifida Program as they grow to prepare for a smooth transition to adult healthcare.

Did you know that spina bifida is the most common permanently disabling birth defect in the U.S.? Learn more spina bifida facts and help spread the word.

https://www.nj.gov/labor/career-services/special-services/individuals-with-disabilities/

The mission of the New Jersey Division of Vocational Rehabilitation Services (DVRS) is to enable eligible individuals with disabilities to achieve an employment outcome consistent with their strengths, priorities, needs, abilities, and capabilities. Find resources including a guide to vocational rehabilitation and a list of DVRS field offices.

https://www.adacil.org/ddd-services

New Jersey's Alliance Center for Independence (ACI) provides services (career planning, community based services, community inclusion, prevocational training, supportive employment, and more) through the Division of Developmental Disabilities (DDD). These services are provided through DDD referral only.

https://www.dli.pa.gov/Individuals/Disability-Services/ovr/Pages/default.aspx

The Pennsylvania Office of Vocational Rehabilitation (OVR) serves people who have disabilities that present barriers to employment. Services are provided to individuals to prepare for keep or find employment. OVR has 21 District Offices located around the state. Counselors work every year with thousands of persons who have physical, mental, or emotional disabilities.

https://www.state.nj.us/humanservices/ddd/individuals/guardianship/

A guardian is someone that is legally authorized to act on behalf of a minor or an incapacitated adult to assure that the person’s health, safety, and welfare needs are met and that their rights are protected. New Jersey provides helpful information on obtaining guardianship and a guardianship packet.

https://www.disabilityrightspa.org/resources/#transition-to-adulthood

Disability Rights Pennsylvania (DRP) offers a self-advocacy guide for transition to adulthood, with information to help you in advocating for yourself or someone else with a disability.

https://www.state.nj.us/humanservices/dds/resources/cntrindlivindex.html

Centers for Independent Living (CILs) are community-based, consumer-driven organizations that provide information and referral, peer counseling, skills training, advocacy and a variety of services based on individual needs. Find CIL services in New Jersey.

https://pasilc.org/independent-living/centers-independent-living/

Centers for Independent Living (CILs) are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. Learn more about the services provided by Pennsylvania CILs.

https://www.hydroassoc.org/transitioning-to-college-academics/

This resource from the Hydrocephalus Association walks students with disabilities through the formal process to request living accommodations at school. This usually begins with contacting the Disability Support Office (DSO).

https://www.paieb.com/en

The PA IEB provides enrollment support for Pennsylvania’s Home and Community Based (HCBS) waiver programs.

https://www.phlp.org/en/resource-library

The Pennsylvania Health Law Project (PHLP) is a non-profit legal services organization that represents Pennsylvanians who need help getting or keeping Medicaid (Medical Assistance or MA). Their "self help" resource library includes information about medical assistance for workers with disabilities, Medicare/Medicaid dual eligibility, application process for OLTL waivers, and more. 

Watch a short video highlighting key aspects of spina bifida care provided at Children's Hospital of Philadelphia.

http://spinabifidaassociation.org/

The Spina Bifida Association is a comprehensive source of information and resources about spina bifida, the most common permanently disabling birth defect in the United States.

https://www.sbadv.org/index.html

The mission of the Spina Bifida Association of Delaware Valley is to promote the prevention of spina bifida and to enhance the lives of all affected.