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Spina Bifida Program Resources

Our Spina Bifida Program experts have created this list of resources to help you keep your child safe and well.

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Centers for Independent Living - New Jersey

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.

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Centers for Independent Living - Pennsylvania

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.

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Disability Rights PA Transition Resources

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.

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Facts About Spina Bifida

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.

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Guardianship in New Jersey

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.

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Pennsylvania Health Law Project: Medical Assistance

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. 

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Transitioning to College: Accommodations

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).

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