All Resources

The State Organizations and online Resource Directories categories include the main resources available. Additional categories are supplemental and will gradually expand/multiply.

• Accessible Transportation

  • Adapting Motor Vehicles
  • Driving and ADD/ADHD
  • Driving and Spina Bifida
  • Driving with a Disability
  • Hand Controls/Rental Cars
  • Handicapped Parking Privileges
  • New Jersey Accessible Transportation Services
  • New York Accessible Transportation Services
  • NJ Find A Ride
  • NJ Transit Accessible Services
  • Teens with LD Driving Guide
  • Travel Training for Youth

• Adaptive Sports

  • Carousel House
  • Lightning Wheels
  • PA Center for Adaptive Sports Isabel Bohn
  • Sail-Habilitation
  • Sailability New Jersey
  • Therapeutic Riding Medical Considerations
  • United Spinal Association
  • Wheelchair Sports USA

• Adult Spina Bifida Issues

  • A Parent’s Perspective: LDs & Dating
  • Adults Issues & Spina Bifida

• Advance Directives

  • Planning Ahead for Important Health Care Decisons- Health Care Proxy form

• Allies Matching $$$ Programs

  • Project American Dream
  • SOS Financial Literacy Training

• Arnold Chiari Malformation

  • National Institute of Neurological Disorders
  • Overview of Symptomatic Chiari Malformation
  • The Chiari Institute
  • What is Chiari Malformation?
  • World Arnold Chiari Malformation Association

• Caregiver Support

  • 10 Tips for Family Caregivers
  • Cargiver NJ
  • Cargiver Self-Assessment
  • Learn How to Relax

• Complementary/Alternative Medicine

  • Alternative Approaches to Mental Health
  • Mind-Body Medicine:An Overview
  • National Institutes of Health – CCAM
  • NIH-CCAM Health Information
  • NIH-CCAM Online Video Courses
  • Prayer & Spirituality in Health

• Continence Issues

  • Continence Management & Spina Bifida
  • Continence Management Checklist
  • Continence Planner
  • Spina Bifida and Continence Information
  • Toilet Training the Child with Spina Bifida
  • Urinary Continence/Bowel Control for Children
  • Urologic Care and Management
  • Young Adult Continence Manual

• Coping for Kids

  • 5 Steps to Fighting Stress
  • About Self-Esteem
  • About Wheelchairs
  • About Worrying
  • Being Afraid
  • Dealing with Anger
  • Feelings Complete Series
  • Going to a Therapist
  • How to Use 911
  • If You Don’t Like School
  • Learning Problems
  • Nervous About Tests
  • Organize, Focus, Get it Done!
  • Things That Help Me
  • Why Am I So Sad?

• Courses/Planning

  • Guide for Consumers: Hiring Direct Support Staff
  • Guide for Families: Hiring Direct Support Staff
  • Information on Guardianship
  • Keeping It Real: How to Get the Supports You Need..
  • Money Management Skills Training
  • Parenting Teens & Young Adults with Disabilities
  • Partners in Employment Online Course
  • Partners in Living Online Course
  • Youthhood.org: Personal Future Planning

• Developmental Disabilities State Agencies

  • New Jersey DDD Services Overview
  • New York OMR/DD Services

• Disability Income/Insurance

  • Medicare/Medicaid
  • Social Security Administration

• Early Childhood

  • Assistive Technology for Infants & Toddlers
  • Find Help for Your Young Child
  • New York Early Intervention Program
  • NJ Early Intervention System
  • Reflections on Early Childhood

• Education Advocacy

  • AHEAD Higher Ed & Disability
  • Heath National Clearinghouse on Postsecondary Ed & Transition
  • Statewide Parent Advocacy Network
  • Wrights Law Special Ed Advocate

• Education Law

  • ADA Northeast Technical Assistance Hotline
  • Disability Rights NJ
  • Education Rights of Immigrant Students
  • IDEA 2004 Training Curriculum
  • NJ Education Law Center
  • NJ Special Education Administrative Code
  • Partners in Education Online Course
  • Wrights Law Special Ed Advocate

• Emergency Preparedness

  • Handout #1: FEMA Guide
  • How to Use 911
  • MedicAlert Services
  • People with Disabilities/Special Needs

• Employment Advocacy

  • Job Accommodation Network
  • NJ Work Incentive Network Support (WINS)

• Family Support

  • What is Family Support?

• Fitness

  • Exercise for Teens with SB Video
  • Physical Activity Guidelines for SB

• Future Planning

  • Advance Directives
  • Guardianship Association of NJ, Inc.
  • How to Become a Legal Guardian (DDD)
  • New Limited Guardianship Law Summary
  • Planned Lifetime Assistance Network NJ
  • Special Needs Trusts

• General

  • Walk Registration

• Health Care Advocacy

  • Discharge Planning Guide
  • Folic acid offers more protection of premature birth than thought
  • Managed Care Bill of Rights
  • Medical Records Rights
  • New York Health Advocacy Information
  • NJ Community Health Law Project
  • NJ Patient Bill of Rights
  • Patients’ Rights: Speak Up

• Health Coverage

  • Medicare/Medicaid
  • NJ FamilyCare
  • NJ Private Buyer’s Guide

• Health Literacy

  • Ask Me 3
  • Folic acid offers more protection of premature birth than thought
  • Prevention: Folic Acid

• Health Management

  • Managing Bladder Incontinence
  • Managing Bowel Incontinence
  • Wallet-Size CT/MRI Shunt Card

• Housing/Accessibility

  • Home Modification Resource Guide
  • Home Modifications
  • New York Disability Housing Guide
  • NJ Disability Housing Guide
  • NJ Housing Resource Center
  • NJ Modular Ramp Program
  • Project American Dream
  • US-HUD Homes & Communities

• Hydrocephalus

  • Hydrocephalus & Shunts
  • Hydrocephalus Association
  • Hydrocephalus Fact Sheet
  • National Institute of Neurological Disorders
  • Symptoms of Shunt Malfunction

• International Federation for Spina Bifida & Hydrocephalus

  • Being Pregnant with a Child with Spina Bifida
  • Portraits: Living with Spina Bifida & Hydrocephalus

• Las Historias Interiores

  • Ácido Fólico
  • Apoyo Familiar
  • Contáctese con SBRN
  • Creciendo Con Espina Bifida
  • Estar Embarazada de un niño que tiene Espina Bífida e Hidrocefalia
  • Frente a Mi Nariz Libro
  • Informacion para Niños
  • Informacion Sobre Espina Bifida!
  • La Tecnología Asistencial
  • Los Derechos en Educación Special
  • Obtener el Apoyo que Necesita
  • Petición para Servicios
  • Procesamiento Auditivo
  • Publicaciones de NICHCY
  • Recursos Estatales de Nueva Jersey
  • SBRN Membrecia
  • Serie de hojas informativas

• Latex Allergy

  • American Latex Allergy Association
  • Latex Allergy Overview
  • Overview of Latex Allergy in Spina Bifida
  • SBA 2008 Latex List

• Learning Disabilities

  • Are There LDs with Spina Bifida?
  • Education & Spina Bifida

• Learning Disability Family Support

  • Families/Fathers/Siblings Articles

• Legal Advocacy

  • ADA Technical Assistance Hotline
  • Disability Rights NJ
  • NJ Community Health Law Project
  • NJ Division on Civil Rights

• Let's Talk About

  • SB & 504 Plan
  • SB & Chiari Malformation
  • SB & Education Programs
  • SB & Home Strategies
  • SB & Learning
  • SB & Nutrition
  • SB & Physical Therapy
  • SB & Self-Catheterization
  • SB & Skin Care
  • SB & Urologic Management
  • Spina Bifida
  • Tethered Cord Syndrome

• Medicare Insurance Counseling

  • Medicare Insurance Counseling

• Mental Health/Spirituality

  • Alternative Approaches to Mental Health
  • Attitude is Key in Quality of Life
  • Child’s Responses to Illness, Injury, Health Care
  • Depression & Anxiety in Spina Bifida
  • Learn How to Relax
  • Mind-Body Medicine
  • Prayer & Spirituality in Health
  • Relaxation Exercise
  • Spirituality & the Lives of People with Lds
  • Taking your Child to a Therapist

• National Organizations

  • Family Center on Technology and Disability
  • NICHCY: Assistive Technology

• Newsletters

  • ABCD of NJ News
  • Elizabeth M. Boggs Center
  • Family Support Center of NJ Ezine
  • Ldonline
  • NJCDD Publications
  • SBA eInsights into Spina Bifida
  • SBRN Empowerment Zone
  • Statewide Parent Advocacy Network
  • The Law & Disability eNewsletter
  • Wrights Law Special Ed Advocate

• Obesity

  • Exercise for Teens with SB Video
  • Overview of Obesity in Spina Bifida
  • Physical Activity Guidelines for SB

• Online Support Groups

  • SB Parents Listserv
  • SBA Occulta Listserv
  • SBA Youth & Adult Alliance Listserv
  • SBMoms-N-Dads Yahoo Group
  • Spina Bifida Central

• Oral Health Problems

  • Dental Care Every Day: A Caregiver’s Guide
  • Donated Dental Services
  • Finding Low Cost Dental Care
  • Oral Health/Special Health Care Needs
  • Six Steps to a Safe Wheelchair Transfer

• Orthopedics

  • Mobility of Aging Person with SB
  • National Scoliosis Foundation
  • Overview of Hip Function & Ambulation
  • Pediatric Orthopedics

• Pain

  • American Academy of Pain Management
  • American Chronic Pain Association
  • Pain Management in Chiari Malformation (Video)
  • Relaxation Exercise
  • Spina bifida and Back Pain

• Parents with Disabilities

  • National Center for Parents with Disabilties
  • Parents with Disabilities Online

• Personal Assistance Services

  • A Home Healthcare Primer
  • Medicaid Personal Care Assistance
  • New York Consumer Directed Personal Assistance Program (CDPAP)
  • Personal Assistance Services Program
  • Personal Preference Program

• Personal Preference Program

  • Personal Preference Program

• Possible Secondary Conditions

  • Adolescent Health Transition Project
  • Adult Health Care Transition Guide
  • Are There LDs with Spina Bifida?
  • Depression & Anxiety in Spina Bifida
  • Education & Spina Bifida
  • Growing up with Spina Bifida
  • Hydrocephalus & Shunts
  • Hydrocephalus Fact Sheet
  • Latex Allergy Overview
  • Mobility of Aging Person with SB
  • Overview of Hip Function & Ambulation
  • Overview of Obesity in Spina Bifida
  • Overview of Precocious Puberty
  • Overview of Symptomatic Chiari Malformation
  • Overview of Tethering Spinal Cord
  • Overview of Transitions in Adolescence
  • Pediatric Orthopedics
  • Physical Activity Guidelines for SB
  • Prevention of Pressure Sores
  • Sex & Spina Bifida
  • Spina bifida and Back Pain
  • Spina Bifida and Continence Information
  • The Chiari Institute
  • Transitioning Urologic Care
  • What is Chiari Malformation?

• Prescription Assistance

  • Help with Prescription Drugs
  • NJ PAAD/Senior Gold
  • NJ Rx Drug Price Registry
  • RX4NJ

• Prevention/Genetics

  • Folic Acid Article*
  • Folic acid offers more protection of premature birth than thought
  • Genetics & Spina Bifida
  • January Is Folic Acid Awareness Month
  • National Council on FA
  • Prevention: Folic Acid

• Recreation & Enrichment

  • Access Pass – National Parks
  • Accessible Gardening
  • Accessible Travel
  • American Dance Wheels
  • Kardon Institute for Arts Therapy
  • Specialty Wheelchairs
  • Travel with a Disability
  • VSA Arts NJ

• Research

  • SB Evidence-Based Practice
  • SBA Research Index
  • The SANDI Project

• Resources

  • 2009 New Jersey RESOURCES Directory
  • AbleLink Technologies
  • Assistive Technology for Infants & Toddlers
  • AT & Special Education Rights
  • Freedom Scientific Learning Technology
  • Great Schools AT Resource Guide
  • LD OnLine’s AT Resource Guide

• Role of Assistive Technology

  • Secondary Conditions Webinar

• School Age

  • Accommodations & Modifications
  • Accommodations & Modifications Fact Sheet
  • Considering Homeschooling
  • NJ County Offices of Education
  • NJ Department of Education
  • NJ Office of Special Education
  • Online Classes: Middle & High School
  • Parent’s Learning Disability Guide Series
  • Spina Bifida Checklist: Working with Schools
  • Statewide Parent Advocacy Network
  • The SANDI Project
  • Transportation

• Self-Advocacy Support:

  • It’s My Choice Personal Future Planning Manual
  • Keeping It Real: How to Get the Supports You Need..

• Service Animals

  • Canine Companions for Independence
  • Canine Partners for Life

• Sexuality

  • Dating & Sexuality
  • Overview of Precocious Puberty
  • Sex & Spina Bifida

• Sibling Support

  • LDs & Sibling Issues
  • Sibling Support Project
  • Siblings Overview
  • The SB Sibling Experience

• Skill Development

  • Learning Difficulties & Social Skills
  • Teens & the Art of Meal Preparation

• Skin Breakdown

  • Prevention of Pressure Sores

• Social Emotional Growth

  • 6 Dimensions of Wellness

• Special Education Parent Support

  • Learning & Executive Function
  • New York Parent Guide to Special Education
  • New York Special Education Publications
  • New York Special Education Services
  • Organization & Time Management
  • Parent LD Tool Kit
  • Parental Rights in Special Ed
  • Requesting a One-to-One Aide
  • SPAN Basic Rights in Special Education Manual
  • SPAN Parent Trainings
  • The Special Ed Paper Chase

• Spina Bifida Centers

  • Kessler Adult SB Center
  • SBA Clinic Directory

• Spina Bifida Learning Issues

  • Lazy Kid or Executive Dysfunction?
  • Learning Among Children with Spina Bifida
  • Learning Difficulties & Social Skills
  • NICHCY Fact Sheet: Learning Disabilities
  • Overview of Spina Bifida Educational Issues
  • Reading Problems: Middle School & High School

• Spina Bifida Overview

  • Spina Bifida Overview
  • Spina Bifida Overview for Kids

• Spina Bifida Resources

  • Living with Spina Bifida
  • Spina Bifida Overview

• State Organizations

  • Adaptive Technology Center for NJ Colleges
  • Back in Action Assistive Technology Equipment Exchange
  • CP of NJ AT Services & Technology Lending Center
  • New Jersey State Resources
  • New York Assistive Technology
  • New York State Resources
  • NJ Assistive Technology Advocacy Center

• Summer Camp

  • American Camp Association
  • Camp Spifida
  • How to Choose a Camp
  • Is Your Child Ready for Camp?
  • Kids Camps
  • NICHCY: Summer Camp
  • SBA of Western Pennsylvania

• Support Organizations

  • Institute for Community Integration
  • National Center for Learning Disabilities
  • NJ County Boards of Social Services
  • NJ County Offices for the Disabled
  • NJ Division of Developmental Disabilities
  • NJ Division of Disability Services
  • Real Life Choices Self-Directed Services
  • SBRN Family Support
  • US Office on Disability

• Support Services

  • A Home Healthcare Primer
  • NJ Catastrophic Illness Fund
  • NJ Special Child/Adult Services
  • SBRN Family Support

• Systems Advocacy

  • ABCD of New Jersey
  • ARC of New Jersey
  • Family Support Coalition
  • Making Your Case Manual
  • Monday Morning Project
  • NJ Council on Developmental Disabilities
  • NJ Partners in Policymaking Training
  • NJ Regional Family Support Planning Councils
  • Partners in Policymaking Online Courses
  • The Elizabeth M. Boggs Center

• Tethering Spinal Cord

  • Neurosurgery Today
  • Overview of Tethering Spinal Cord

• Transition Issues

  • Adolescent Health Transition Project
  • Adult Health Care Transition Guide
  • Overview of Transitions in Adolescence
  • Transitioning Urologic Care

• Transition to Adult Life

  • Adults with Learning Disabilities
  • Center for Adaptive Technology & Inclusive Education
  • Heath National Clearinghouse on Postsecondary Ed & Transition
  • Keeping It Real: How to Get the Supports You Need..
  • National Center for Learning Disabilities
  • National Center on Secondary Education & Transition
  • NJ Adult Basic Education/GED Programs
  • SPAN: Transition to Adulthood
  • TATRA Postsecondary Resources
  • Travel Training for Youth with Disabilities

• Work Incentives

  • Work Incentives