Words to know

44 words families with medical complexity hear most, in plain language.

Words and acronyms

AAC: Augmentative and alternative communication: speech devices, eye-gaze systems, picture boards and other ways to communicate without speech, or alongside it.
Advance directive: A written plan that says what care a person wants, or does not want, if they cannot speak for themselves. For children, parents make these choices with the care team.
Appeal: Asking an insurance plan or Medicaid to look again at a decision to deny, reduce or stop a service.
Baseline: How your child usually is on a good day: breathing, color, oxygen level, alertness. Emergency teams need to know it to see what has changed.
BiPAP and CPAP: Machines that help with breathing through a mask, often at night.
Care coordinator: The person whose job is to help the care team, the family and the payers work together. Clinics, health plans and state programs may each have one.
Care plan: A written plan from the care team: diagnoses, medicines, equipment, goals, and what to do when something changes.
Case manager: A person at Medicaid, a health plan or a waiver program who approves and tracks services.
Central line: A thin tube placed in a large vein for medicine, fluids or nutrition over a long time.
CHIP: The Children's Health Insurance Program. It covers children in families who earn too much for Medicaid but cannot afford private insurance. Some states run it as part of Medicaid.
Complex care clinic: A clinic, usually at a children's hospital, that acts as a medical home for children with many conditions and many specialists.
Concurrent care: For children with Medicaid or CHIP, getting hospice care while still getting treatment for the illness. Federal law has allowed this since 2010.
CYSHCN: Children and youth with special health care needs. Every state has a Title V program for them.
Denial: A decision by Medicaid or an insurance plan not to pay for a service. You can appeal it.
DME: Durable medical equipment: equipment used at home for a long time, like ventilators, feeding pumps, suction machines, hospital beds and wheelchairs.
Emergency information form: A one-page summary of a child's conditions, medicines, devices and baseline for emergency teams. The American Academy of Pediatrics and the American College of Emergency Physicians recommend one.
EPSDT: Early and Periodic Screening, Diagnostic and Treatment. The Medicaid benefit for children under 21. Medicaid must cover any medically necessary service that federal law lets Medicaid cover, even if the state does not cover it for adults.
Fair hearing: The formal Medicaid appeal, heard by someone outside the agency that made the decision.
Family-to-Family Health Information Center: A family-run center in every state, funded by the federal government, that helps families of children with special health care needs find care and pay for it. Often called an F2F.
G-tube: A gastrostomy tube: a feeding tube placed through the belly into the stomach. A button is a low-profile kind.
Health home: A Medicaid program that pays for extra care coordination for people with chronic conditions. A 2019 federal law, the ACE Kids Act, lets states offer health homes for children with medically complex conditions.
Home health aide: A trained aide who helps with personal care at home, like bathing and dressing. Not a nurse.
Hospice: Care focused on comfort and quality of life when a cure is no longer the goal. It can happen at home.
IHP: Individualized health plan: the school's written plan for a student's health care during the school day, written with the school nurse.
J-tube and GJ-tube: Feeding tubes that go into the small intestine (the jejunum). A GJ-tube has a port into the stomach and one into the intestine.
Katie Beckett and TEFRA: Common names for Medicaid options that cover children with significant disabilities who live at home, whatever the parents' income.
Medicaid waiver: A Medicaid program that pays for services at home and in the community instead of in a hospital or institution. Many have wait lists.
Medical complexity: Several serious, long-term health conditions at once, a need for many specialists, often medical devices, and a lot of care at home.
Medical home: A primary care practice or clinic that knows your child well and coordinates all of their care.
Medically fragile: A term many states and programs use for people whose health can change quickly and who need nursing-level care.
NG-tube: A nasogastric tube: a feeding tube that goes through the nose into the stomach, usually for a shorter time.
NICU: The neonatal intensive care unit, where newborns who are very sick or born early are cared for.
Palliative care: Extra support for comfort, symptoms and quality of life, at any stage of a serious illness, alongside treatment.
PDN: Private duty nursing: a nurse who cares for one person at home for a block of hours, from a few hours a day to around the clock.
Pediatric subspecialist: A doctor trained in one area of children's medicine, like pulmonology (lungs), GI (digestion), nephrology (kidneys) or genetics.
PPEC: Prescribed pediatric extended care: a medical day care center with nurses, for children who need medical care during the day. Only some states have them.
Prior authorization: Approval a health plan or Medicaid must give before it pays for a service, supply or medicine.
Pulse oximeter: A small device, usually clipped to a finger or toe, that measures oxygen in the blood.
Respite: A break for family caregivers, while someone trained looks after the person they care for.
Suction machine: A machine that clears mucus from the mouth, nose or a trach.
Title V program: Each state's program for children and youth with special health care needs, funded through the federal Maternal and Child Health Block Grant. It may pay for some care and help coordinate it.
Trach: A tracheostomy: a breathing tube placed through the neck into the windpipe.
Transition to adult care: Moving from pediatric doctors and programs to adult ones, usually between 18 and 26. Planning should start years before.
Ventilator: A machine that breathes for a person, or helps them breathe, through a trach or a mask.

Last reviewed: November 2026. Programs, rules and phone numbers change. Check with the program named on this page. Report outdated or wrong information.