Your First Week: A Checklist

You got through the first three days. This is the week-one list: the calls, forms and people that save you the most trouble later. Print it, check things off, skip what doesn’t apply.

If you have not read it yet, start with The First 72 Hours. Words you don’t recognize are in the glossary.

Your care team

• ☐ Write down your main point of contact. One name, one number. When something is confusing, this is who you call first.
• ☐ Get the after-hours and urgent number. Put it in your phone under a name you will find at 2 a.m., like “AAA Clinic Urgent.”
• ☐ Ask for the fever and emergency rule in writing. Know the exact temperature or symptom that means “call now,” and whether you go to the clinic or the ER.
• ☐ Get the diagnosis and care plan on paper. You will read it many times. Ask for the roadmap if treatment has phases.
• ☐ Set up the patient portal. Test results, appointment times and messages to the team all land there. Turn on notifications.
• ☐ Sign a HIPAA release for the second parent or a grandparent. Without it, the team may not be able to talk to anyone but you.
• ☐ Ask for the social worker by name. They are the door to lodging, gas cards, foundations and emergency funds. Get their direct line.
• ☐ Ask for the financial counselor by name. This is a different person from the social worker. They handle insurance, estimates, charity care and payment plans.

Deeper dive: The First 72 Hours and Treatment Cost Overview.

Insurance (call this week)

• ☐ Call member services, the number on the back of the card. Say your child has a new serious diagnosis and you need to understand the plan. Write down the date, the time and the name of who you spoke to.
• ☐ Confirm the hospital and every doctor are in network. Ask about the oncologist, the surgeon, the anesthesiologist and the lab. The No Surprises Act limits many surprise out-of-network bills at an in-network hospital, but catching a gap early is still easier than disputing a bill later.
• ☐ Ask what needs prior authorization. Scans, some drugs, home nursing and specialty pharmacies often do. The hospital usually requests it, but you want to know what is pending.
• ☐ Ask for a case manager. Most plans assign a nurse case manager for a serious diagnosis. They can push approvals through and answer questions faster than the main line.
• ☐ Ask for your deductible, out-of-pocket maximum and where you stand on each. Once you hit the out-of-pocket max, your share of covered in-network care drops to zero for the rest of the plan year.
• ☐ Start an EOB folder. An Explanation of Benefits is not a bill. File every one, paper or digital, by date.
• ☐ Do not pay a bill until it matches an EOB. Early bills are often wrong or arrive before insurance has processed the claim. Call the billing office and say you are waiting on the EOB.
• ☐ If you are uninsured or about to lose coverage, ask about Medicaid, CHIP and a special enrollment period. Losing health coverage, including employer coverage, usually opens a 60-day window to enroll in a Marketplace plan; Medicaid and CHIP can be applied for any time. The financial counselor can start the application.
• ☐ Ask whether your child may qualify for Medicaid as secondary coverage. In some states a child with significant medical needs can qualify through a waiver or disability pathway even when the parents’ income is higher. It is not automatic, so ask to be screened.

Deeper dive: Insurance Navigation and Medicaid.

Work and income

• ☐ Tell your employer you need flexibility. You do not have to share the diagnosis. “My child has a serious medical situation and I need to adjust my schedule this month” is enough.
• ☐ Request FMLA paperwork from HR. Unpaid but job-protected leave, up to 12 weeks a year, and it can be taken in pieces for appointments. Ask the care team to complete the medical certification.
• ☐ Ask about paid family leave or disability in your state. Some states pay a portion of your wages while you care for a seriously ill child. Your HR office or state labor department knows the name of the program where you live.
• ☐ Ask about working remotely or shifting hours. Put the request in an email so there is a record.
• ☐ Check whether coworkers can donate PTO. Many employers have a leave-donation policy and nobody uses it until someone asks.
• ☐ Confirm how your health insurance continues if your hours drop. Ask HR directly, before it becomes a problem.
• ☐ If you have been laid off, file for unemployment the same week. Benefits start from the week you file, not the week you lost the job. Being a caregiver does not automatically disqualify you; answer the questions honestly and ask about exceptions.

Deeper dive: FMLA, Family and Medical Leave Insurance, Communicating with Your Employer and Workplace Accommodations.

Money and benefits

• ☐ Meet the financial counselor this week, not after the first bill. Bring your insurance card, a recent pay stub, and any leave or layoff letter.
• ☐ Ask about charity care, and get the answer in writing. Most hospitals must have a financial assistance policy. Ask for the application, the income limits and the deadline.
• ☐ Screen for SNAP, Medicaid, WIC and energy assistance. Eligibility is based on your income now, not last year’s tax return. A parent who stopped working often qualifies and does not know it.
• ☐ Call 2-1-1. Available anywhere in the U.S. for local help with rent, food, utilities and gas cards. They know which programs have money this month.
• ☐ Start a bills folder. Everything with a dollar sign goes in it, unpaid, until it matches an EOB.
• ☐ Start a mileage, parking and tolls log. Some foundations reimburse travel, and medical mileage can be tax deductible. A note on your phone is enough.
• ☐ Ask the social worker which foundations they refer families to. Many require a social worker’s referral, and some have funds that run out each year. Ask early.
• ☐ Ask whether the hospital has an emergency fund. Many children’s hospitals do, for exactly this week.
• ☐ Call your mortgage servicer or landlord before you miss a payment. Forbearance and hardship plans exist, but they are far easier to get before you are late.

Deeper dive: State Assistance Programs, Financial Assistance Programs, Financial Assistance Foundations and Utility Assistance.

Home base near the hospital

• ☐ Ask the social worker about Ronald McDonald House or the hospital’s lodging list. Free or low-cost rooms close to the hospital, usually by referral. Ask even if you live nearby; a long inpatient stay changes the math.
• ☐ Ask for parking passes and meal vouchers. Most hospitals have them for families of inpatients. They are rarely offered unless you ask.
• ☐ Find the family room, the showers and the laundry on the unit. Ask a nurse. Many floors have all three.
• ☐ Pack a hospital bag that stays packed. Chargers, a long cable, toiletries, a sweatshirt, a notebook, snacks, a copy of the insurance card and the medication list.
• ☐ Decide who stays which nights. Put it on a shared calendar. The parent at home sleeps; the parent at the hospital does not.

Deeper dive: Transitional Housing.

Siblings and school

• ☐ Notify the school counselor for every child, including siblings. One email to the counselor, who tells the teachers. Siblings’ grades and behavior often slip before anyone connects the dots.
• ☐ Ask the patient’s school about home instruction and a 504 plan. Home or hospital instruction keeps your child enrolled and on track; a 504 plan sets up accommodations for the return.
• ☐ Ask whether the hospital has a school program or teacher. Many children’s hospitals do, and they coordinate with the home school.
• ☐ Arrange sibling rides and after-school care for the next two weeks. Be specific when people ask how to help: “Tuesday and Thursday pickup” gets a yes.
• ☐ Name one adult each sibling can talk to. A grandparent, a coach, the school counselor. Tell the sibling who it is.

Deeper dive: School Communication, Educational Support and Family Wellness.

Friends and family

• ☐ Name one update person. They send the news so you do not repeat it twenty times. Everyone else gets pointed to them.
• ☐ Start a Meal Train, CaringBridge or similar page with specific asks. Meals that reheat, sibling rides, dog walks, grocery runs, gift cards for gas. Vague offers turn into nothing; a sign-up sheet turns into dinner.
• ☐ Say yes to help. People want a job. Give them one.
• ☐ Keep a list of who offered what. In week three you will remember that someone offered to mow the lawn and not remember who.
• ☐ Decide what you will and will not share online. Agree on it as parents before the first post, and ask family to follow the same rule.
• ☐ Give yourself permission to not answer. Do Not Disturb is on. The update person has it covered.

Deeper dive: Self-Care Strategies and Family Wellness.

You

• ☐ One real meal a day. Not vending machine crackers. Let someone bring it.
• ☐ One shower a day. The unit has one. Ask.
• ☐ One short walk a day. Ten minutes outside the building. The hallway counts if that is all you have.
• ☐ Pick one person you tell the truth to. Not the update person. Someone you can say “I am not okay” to without managing their reaction.
• ☐ If you are not okay, call or text 988. The 988 Suicide and Crisis Lifeline is free, 24/7, and for caregivers too, not only for emergencies.
• ☐ Ask the social worker about caregiver support. Many hospitals have a parent group, a chaplain, or a counselor on the unit. Lean on whichever one you can stand.

Deeper dive: Emotional Support and Self-Care Strategies. For local help with anything on this page, dial 2-1-1.

What can wait

Long-term planning, the big financial decisions, and every form that is not due this week. You will get to them. One list at a time.