Throughout our book, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, we encourage expectant parents to contact their local Down syndrome group, both for support and for answers to various questions that are best found locally. We understand prenatal support programs may be in various stages of development, so this checklist may help some local groups. In order to be prepared for possible questions by expectant parents, local groups should have the following information, or as much of it as practical, available to expectant parents.
Start with a link to downsyndromepregnancy.org on your website. Explain that there is a free book available for download. Do not put the book itself on your website as this is copyrighted information.
Other areas we suggest be addressed in the new/expectant parent section of your website are:
1. Your organization’s new and expectant parent support
- Prenatal support information
- Contact person for prenatal support
- A menu of available programs, and services
- Local on-line discussion group or e-mail list — information to sign up
- Local sibling programs
2. Parent to parent support connections with parents who are similar (internal list or database)
- Cultural background
- Religious background
- Other language
- Specific geographic locale
- Single parents
- Same associated medical conditions, such as heart defects (particular kinds), intestinal atresias, and fluid issues (in general or things such as hydrops)
3. Local health care providers. Include websites, name of contact, and contact information if available
- Recommendations of obstetricians in area. This will help expectant parents having issues with the care they are receiving
- Recommendations of therapists in area (centered on perinatal depression). This will help expectant parents needing professional assistance with the emotions post-diagnosis, particularly those at more risk due to history or circumstance.
- Local lactation consultants or breastfeeding support groups experienced with Down syndrome.
- Local hospitals for delivery. Include names, addresses, websites and basic delivery information (if NICU, level of NICU).
- Local Children’s Hospitals information.
- Local Trisomy 21 or Down Syndrome clinic information.
4. Local services and agencies. List websites, name of contact, and contact information for each service/agency.
- State services: insurance programs (CHIP) information
- Other related benefits & disability service programs
- State services: rules for Medicare, SSI
- State services: early intervention structure. Also provide expected parental financial contributions and general overview.
- Local services: early intervention structure
- Local providers list (by agency matched to geographic locale)
- Parent-to-Parent specific geographic area/ EI