Touchpoints is a list of resources targeting new issues faced at developmental milestones. We hope you will visit this page often as you/your child progress through your journey with spina bifida. This page offers website links that enable you to leave this site and go directly to the linked site. The links are provided to assist families in locating supports, services, and information related to living with spina bifida. The SB-Coalition is not responsible for the content on or any links contained on these linked sites. Inclusion of these resources on this list does not imply personal experience with or endorsement of the organization or company by the The SB-Coalition, its Board of Directors or staff.


All Age Groups

Achieving a Better Life Experience (ABLE savings accounts) – SSA Overview

Indiana INvestABLE Accounts 
Kentucky STABLE Accounts 
Ohio STABLE Accounts
West Virginia Able Accounts

Center for Disease Control Spina Bifida Information Page

Center for Spina Bifida at CCHMC Clinic Contact List

Cincinnati Children’s Hospital Medical Center Family Resource Center 

Cincinnati Children’s Hospital Medical Center Jack Rubinstein Library 

Cincinnati Children’s Hospital Medical Center Special Needs Resource Directory 

Division of Developmental and Behavioral Pediatrics at CCHMC – Educational Sessions

Guidelines for the Care of People with Spina Bifida- SBA

Guidelines for People with Spina Bifida by Age – SBA

Know Your Rights – ACLU

Living with Spina Bifida Bowel and Bladder Management – Coloplast

Qualifying for Developmental Disabilities Services – Hamilton County

Shunt Complications and Risks – Hydrocephalus Association

Smart911 – Safety Profile

Latex List – SBA

Ohio Center for Autism and Low Incidence (OCALI)

University of Cincinnati Center for Excellence in Developmental Disabilities


Developmental Disabilities Services Early Intervention – Hamilton County

Developmental Milestones Tracker – CDC Learn the Signs, Act Early

Indiana First Steps – Early Intervention

Kentucky First Steps – Early Intervention

Living with Spina Bifida – Infants – CDC

Ohio Early Intervention



Cincinnati PARENT Magazine – Special Needs Directory 

Living with Spina Bifida – Toddlers and Preschoolers – CDC

Right Under My Nose – a book and activities for children with spina bifida

School Age

A Guide for School Personnel – Kennedy Krieger Institute

Advocating for Yourself – Wrightslaw

ADDitude – Could My Child Have ADHD?

Beyond Crayons – Information Packet for School

Bullying –

Educational Issues Among Children with Spina Bifida – SBA

Living with Spina Bifida – School-Aged – CDC

Millie Goes to Camp – Hollister

Millie’s Swimming Success – Hollister

Zones of Regulation – Emotional Control Training

Adolescents and Teens

Before Age 18 Checklist

Employment Support and Training – Opportunities for Ohioans with Disabilities (OOD)

Family Resource Network of Ohio – Charting the LifeCourse

Got Transition


Living with Spina Bifida – Adolescents and Teens – CDC

Ohio Employment First Transition Guide

Pacer’s National Parent Center on Transition

Physical Fitness – NCHPAD

US Department of Education Transition Guide


Community Safety 10 Module Training – Ohio Employment First 

Depression and Anxiety – SBA – emailed questions are answered free of charge

Health Care for Women – SBA

Living with Spina Bifida – Adults – CDC

Obesity – SBA

Social Security Administration