Care at home

Private duty nursing (PDN) is a nurse who cares for one person at home for a block of hours. Hours are usually based on a doctor's order and approved by Medicaid or the health plan. For children under 21 with Medicaid, the EPSDT benefit means Medicaid must cover nursing that is medically necessary.

Home health is shorter visits, like a nurse who comes to check a wound or teach a new routine.

Many families are approved for more nursing hours than an agency can staff. If that happens:

1. Log every shift: hours approved, hours staffed. The nursing hours log does the math.
2. Ask your agency, in writing, when the shifts will be covered.
3. Ask your case manager for other agencies that serve your area.
4. Ask your care coordinator and your state's Title V program for help.
5. Ask whether your state has a program that trains or pays family caregivers. Some do.

Prescribed pediatric extended care (PPEC) centers are day programs with nurses and therapists for children who need medical care during the day. Only some states license them. Search medical day care (on Disability Atlas).

• Keep a list of every device and supply, with sizes and the company that sends it. The supplies list tracks when to reorder.
• Reorder before you are low. Deliveries are often late.
• Ask for a backup of anything life-sustaining.
• If something is denied, ask for the denial in writing and appeal.

Respite gives family caregivers a break while someone trained looks after their child. It can come from a Medicaid waiverWhat does Medicaid waiver mean??, a state respite program, your Title V program or a nonprofit. Search family support (on Disability Atlas). Caregivers matter too: if you are struggling, call or text 988.