Our Frequently Asked Questions
Not sure how to start? Watch our interactive tutorial.
Why was the Preparations site created?
A few years ago the Centers for Disease Control and Prevention (CDC) acknowledged that adults with Spina Bifida were not leading as full, fulfilling, and independent lives as they or their caregivers hoped. The CDC put together a group of professionals from across the country to begin to examine this problem and develop ways in which children with Spina Bifida could better transition to “successful” adulthood. The group developed a “life course model” to map out the developmental stages and topics which were determined to have the most impact on a successful adult life. This site is the result of the work of that group.
How does the site work?
The site is built around a series of suggested interventions and resources developed by the CDC committee of Spina Bifida professionals. These interventions are grouped by age and topic, based on developmental milestones. By answering a series of questions, the site user can develop a report specific to his/her child, or him/herself. This report can be printed or saved.
What should I do with my report?
The report can be used in many ways. The interventions for families are great ways to start enhancing and nurturing your child’s development. You can also share the report, particularly the tips for clinicians, with your child’s medical professionals.
As your child grows, you can respond to the questions in order to evaluate his/her progress in all developmental areas relative to his/her age. You can also suggest successful interventions you have used with your child so that other parents may benefit from their inclusion on the site.
I’m a young adult with Spina Bifida. How can this site help me?
One section of the site is solely devoted to young adult milestones. You can answer these questions for yourself and develop your own report including successful interventions, resources, and tips. You can also share your report with your medical professionals.