No two families take the same path. These stages are the ones most families with medical complexity pass through. Start wherever you are.
1 Stage 1: The diagnosis and the hospitalOften a NICU stay or a long hospital admission. Many new words, many specialists.
What helps Ask for one doctor or nurse who will be your main contact. Write down names and questions. A notebook or the Care binder helps. Ask for a social worker. They can help with lodging, money and next steps. Ask if the hospital has a complex care program. Find a complex care clinic · Family support and lodging
Leaving the hospital with equipment, medicines and a schedule. Training comes first.
What helps Two people at home should be trained on every device before discharge. Make sure equipment and supplies are delivered and working before the first night. Ask if home nursing hours are approved, and who will staff them. Fill in an emergency information form. Going home guide · Going home checklist
3 Stage 3: Building the care teamA medical home, specialists, therapists, a supply company, a nursing agency, and a care coordinator to tie it together.
What helps Keep one list of everyone on the team and how to reach them. Ask each specialist to send notes to your medical home. Learn who to call for what. Who to call for what · Kinds of care
4 Stage 4: Everyday life at homeNursing shifts, supplies, appointments, insurance. And also family life.
What helps Track nursing hours and supplies so problems show up early. Plan for power outages and emergencies. Ask about respite. Breaks keep families going. Care at home · Paying for care
School is a right, with nursing and health plans when they are needed.
What helps Meet the school nurse before the first day. Write an individualized health plan (IHP). Ask about a 504 plan or IEP What does IEP mean? ? Individualized Education Program: a written plan for a child's special education services at school. School · SPED Atlas
Planning for adult life starts around 12 to 14.
What helps Ask the care team for a transition plan. Help your teen learn their own conditions, medicines and devices. Learn what changes at 18 and at 21. Moving to adult care
Adult doctors, adult Medicaid, and decisions about support.
What helps Find adult doctors who will see adults with childhood-onset conditions. Plan for nursing and supplies under adult rules. Look at supported decision-making as well as guardianship. Moving to adult care · IDD Atlas
8 Stage 8: When care turns to comfortPalliative care can help at any stage. Hospice, when the time comes, can be at home.
What helps Ask for a palliative care team early. It is not only for the end of life. Children with Medicaid or CHIP can have hospice and treatment at the same time. Grief support is there for parents and siblings. Comfort care
Last reviewed: November 2026. Programs, rules and phone numbers change. Check with the program named on this page. Report outdated or wrong information .
