If you’ve learned during pregnancy that your child will have an intellectual or developmental disability, you can take steps now to prepare:
Healthcare & Specialists
- Interview pediatricians with experience in your child’s condition. Ask about their approach to developmental concerns and specialist connections.
- Line up specialists early. Wait lists are common. Sign up now to receive care.
- Choose the right hospital for your child’s birth. If your child may need specialized care, select a hospital with a Level III or IV NICU experienced in your child’s diagnosis.
- Learn about hospital discharge planning for babies with special needs. Some conditions require NICU time or specific protocols.
Early Intervention & Support
- Research Early Childhood Intervention (ECI) in your area. Know who to call as soon as your baby is born. You don’t have to wait.
- Consider genetic counseling. A genetic counselor can provide detailed information about your child’s diagnosis, what to expect, and resources specific to the condition.
Insurance & Financial Planning
- Understand your insurance coverage for therapies, durable medical equipment, and specialist visits. Consider applying for Medicaid or STAR Kids before birth if eligible.
Work & Family Leave
- Plan for Family Medical Leave (FMLA) and workplace accommodations. Your baby may require extended hospital stays or frequent appointments. Consider whether your partner should also plan for leave.
Throughout Your Journey
Self-care is critically important. Find ways to create meaningful relief from daily responsibilities. Your support network can include nonprofits, friends, family, and local, state, and federal resources.
Support groups and families on similar paths offer shared wisdom. Case managers and social workers can help with many aspects of your family’s wellbeing, including safety net needs like food, housing, and utilities.
Many families connect with resources at SACRDorg/idd or Morgan’s Multi-Assistance Center and their team of Navigators.
Continue to vision and dream for your child’s life, focused on their abilities. You are your child’s most important advocate. Trust your instincts.
