Resource handbook for NICU families
Your baby is in the Neonatal Intensive Care Unit (NICU). This can be a challenging time for families. This handout is to help answer questions parents ask right away.
Your NICU Team
There are many people within, and outside of UI Health Care here to assist you with any questions you might have. Learn more about who each team member is, and what they are here to do:
NICU Social Workers
NICU social workers provide many services such as information and emotional support, and discharge or transfer planning. Ask your nurse to contact us.
NICU Parent Group
The NICU Parent Group provides activities, education, and a time to meet other NICU families. The group meets from 1 to 2 p.m. on Tuesdays in the Edward Bell Conference Room (outside the main NICU door). For weekly topics, see flyers posted on unit. Please come and take some time for yourself for some fun and relaxation!
NICU Breastfeeding Peer-Support Group
Learn more about breastfeeding and meet other NICU moms who are breastfeeding. The group meets Thursdays 1-2 p.m. in the Edward Bell Conference Room (outside main NICU door). A lactation consultant/NICU staff nurse is available at every group meeting.
For questions about breastfeeding or pumping, please ask your baby’s nurse to contact a lactation consultant.
NICU Parent Class: Infant CPR and Car Seat Instructions
The group meets at 3:15 p.m. on Wednesdays in the Edward Bell Conference Room (outside the main NICU door).
Continuity of Care (COC) Program
COC nurses help with complex discharge planning. They also offer CPR classes.
Services in the NICU include child life, music therapy, occupational therapy, physical therapy, and speech-language services. These services help promote child development.
High Risk Infant Follow-Up
This program follows growth and development after discharge.
Financial, Administrative, and Insurance-Related Questions
There are a number of financial assistance programs that may be available to you. There are also adjustments you should consider making to your insurance. Learn more about these options here:
What do I need to know about right away?
Supplemental Security Income: Supplemental Security Income (SSI) is a federal program run by the Social Security Administration. Many babies in the NICU qualify for this program.
If you are from Iowa, the SSI benefit is $30 per month* and Medicaid of Iowa while your baby is in the hospital. It is based on your baby’s income while your baby is in the hospital. Even if you have insurance for your baby, Medicaid can help pay for deductibles, out-of-pocket maximums, and co-pays. SSI-related Medicaid will stay in place for one year. After one year, it will be based on family income. (*Other states give $30 but the Medicaid is based on income; for example, Illinois residents may apply for Illinois Medicaid).
Cash aid from SSI is $30 while in the hospital. When your baby is discharged, you will need to let the Social Security Administration know. Cash amount will then be based on income and resources. Cash aid can be up to $733 per month.
If your baby meets any of these, they may be able to receive SSI:
- Weighs less than 1200 grams at birth (about 2 pounds, 10 ounces) or
- Weighs less than 2000 grams AND is diagnosed Small for Gestational Age (SGA)
|# of weeks||Weight in grams||Pounds/ounces|
|37-40 weeks||Less than 2000|
|36||1875 grams or less||(4 pounds, 6 ounces)|
|35||1700 grams or less||(3 pounds, 12 ounces)|
|34||1500 grams or less||(3 pounds, 12 ounces)|
|33||1325 grams or less||(2 pounds, 15 ounces)|
- Has a condition that is SSI eligible such as possible developmental delays, long-term (12 months or longer) medical issues, or surgeries.
- Has been readmittedto the hospital, meets SSI medical eligibility, and has been in the hospital for 30 days in a row. Medicaid then goes back to admission date. SSI is based on baby’s income, not parent’s income.
Please contact your NICU Social Worker for help or:
1. Contact your local Social Security Administration (SSA)
2. Contact the SSA toll free number: 800-772-1213
3. Apply online at socialsecurity.gov
More Medicaid of Iowa Programs:
Even if you have insurance, you and your baby may be eligible for Medicaid, which can help with costs not covered by your insurance for up to one year. With Medicaid, you also may be able to get help with health insurance premiums. With Medicaid, baby and baby’s mother may apply for WIC (Special Supplemental Nutrition Program for Women, Infants, and Children).
Talk to your NICU social worker for more information about these programs:
For food and formula, Medicaid allows you to receive WIC: If a baby is eligible for WIC, so is the baby’s mother.
For help with insurance premiums: Health Insurance Premium Payment (HIPP):
If you have insurance and Medicaid or apply for Medicaid or Facility Medicaid, the (Iowa?) Department of Human Services may pay the cost of your insurance premium. Ask your NICU social worker for help with this.
Medicaid is available for one year if your baby has been or may be in the hospital for more than 30 days. If a baby is eligible for Medicaid through Facility Medicaid, Medicaid may continue until the following Medicaid income review (usually in one year).
Cash and Medicaid through FIP: Family Investment Program (FIP) provides cash and Medicaid Health care coverage to families with limited income or resources. You can apply online at dhs.iowa.gov.
Medicaid for the Medically Needy: If your income is too high for Medicaid but your medical costs are high, you may be eligible for this program You may pay some of the costs.
Home and Community Based Services (HCBS) Waivers: HCBS waivers provide services in the home for those who otherwise would need to be cared for in the hospital because they are not eligible for Medicaid or Medicaid services.
Illinois Medicaid: Healthcare for All Kids, Family Care, and Moms and Babies Health Insurance For more information, call the All Kids Hotline toll free at 866-255-5437
For information about Illinois programs, contact the Division of Specialized Care for Children toll free at 800-322-3722, or online www.uic.edu/hsc/dscc.
Food assistance: Supplemental Assistance Nutrition Program (SNAP): Also known as food stamps, SNAP provides nutrition assistance for families with limited income and resources. Apply online at dhs.iowa.gov.
Handicapped Parking Permit: For babies who will be discharged with needs such as oxygen. See your baby’s nurse practitioner.
COBRA (Consolidated Omnibus Budget Reconciliation Act) may allow people who work to keep their insurance if no longer employed.
Disability Rights Iowa (Iowa Protection and Advocacy Services):
400 East Court Avenue, Suite 300, Des Moines IA 50309
Phone: 515-278-2502 or toll free 800-779-2502
Early and Periodic Screening, Diagnosis and Treatment Program (EPSDT):
The EPDST program is for Medicaid recipients under age 21. It may cover medically needed services such as private duty nursing and home health aides.
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Exception of Policy:
For medically necessary services not covered by Medicaid, a medical statement will need to be sent to Iowa Department of Human Services, Office of Appeals. For more information, call 515-281-8438.
Iowa Department of Public Health:
The Department of Public Health offers well-baby and genetics clinics with a sliding fee scale.
What Do I Need to Do First?
Birth Certificate Worksheet
Please complete the birth certificate worksheet located in your white binder on Mother/Baby Unit (MBU) if your baby is born at UI Hospitals & Clinics. Turn it in to your MBU nurse or clerical staff on the MBU unit for processing. Cost to register the baby’s birth is $35 (check only). If you have Medicaid (or are applying for Medicaid) or do not have health insurance, the fee is waived. If you delivered your baby at another hospital, you must complete the birth certificate worksheet at that hospital.
Last Name on Birth Certificate
A paternity affidavit is not required to give the baby the father’s last name on the worksheet. In Iowa, a mother can give the baby the last name of her choice.
Last Name Change
The name listed on the birth certificate worksheet will be legally registered with the state of Iowa and the Social Security Administration within seven days of the birth. If your baby’s last name is different in the NICU than on the worksheet, this will be changed by UI Hospitals & Clinics. If your baby was born outside of UI Hospitals & Clinics, show proof of the birth certificate from the local hospital (the local hospital’s medical records office can fax a copy of the birth certificate worksheet to NICU social worker).
If you want to change the baby’s last name after the worksheet has been turned in, you may change it if/when completing a paternity affidavit. Contact your county’s clerk of district court. There is a fee.
Ask your nurse or NICU social worker for a paternity affidavit. A paternity affidavit has the same effect as a court order establishing paternity.
Women who were not married when they first became pregnant and also were not married when the baby was born may complete a paternity affidavit to establish legal paternity. A paternity affidavit is not required to give the baby the father’s last name. The father’s name will not be listed on the birth certificate by the state as the father of the baby unless a paternity affidavit is submitted.
There is no time limit on signing the affidavit. Both parents must sign in the presence of a notary public. Both parents do not need to sign at the same time or in the presence of the same notary.
Complete the form but do not sign until a notary public is present. A notary public is available from 8 a.m. to 5 p.m. at the information desk in the Main Entrance Lobby. Call 1-319-356-1900 to set up a time. Notaries also are available at other businesses.
Have picture identification with you for the notary public. After the paternity affidavit has been signed and notarized, ask the unit clerk to make two copies—one for the chart and one for you. It is important to keep your copy until the birth certificate arrives. If your baby was born at UI Hospitals & Clinics, you may give the notarized affidavit to the unit clerk on the Mother/Baby Unit to be sent to Vital Statistics. Include a photocopy of your identification cards.
If your baby was not born at UI Hospitals & Clinics, or if you complete this locally, we can send it for you or you can sendit to: Bureau of Vital Records, Iowa Department of Health, 321 E. 12th Street, Lucas Bldg 1st floor, Des Moines, IA 50319-0075. Include a photocopy of your identification cards.
- Contact your insurance company and note the date, time, and person’s name. Add your baby to your policy. Is there a time limit to do this? If your baby will be in the hospital over 30 days and you would like to apply for help with insurance premiums, see your NICU social worker.
- Contact your employer to confirm what is required. Note date, time of call, and person’s name. See your NICU social worker if a verification of birth statement is needed.
- Know your policy and benefits. Co-payment? Deductibles? Yearly maximum?
- Give insurance information to UI Hospitals & Clinics Registration. Call 1-319-356-2211 for details.
- Call UI Hospitals & Clinics Financial Services about any payment issues at 1-319-356-2211.
- Keep notes!!! Write down who you speak with and when. It will help later if any problems.
- Insurance complaints? Call the State Insurance Commissioner’s Office at 1-515-281-5705. Toll Free Consumer Line: 1-877-955-1212
- Add your baby to Medicaid by calling the Medicaid Call Center toll free at 1-877-347-5678. Write down the date, time of call, and contact person.
- Call UI Hospitals & Clinics Registration toll free at 1-866-309-0832 with your baby’s Medicaid number.
Medicaid Travel (and Meal) Claim Form Reimbursement
If you travel to UI Stead Family Children’s Hospital to take your baby home or for follow-up clinic visits, Iowa Medicaid may provide transport or travel costs. Non-emergent trips require prior approval 72 hours in advance (not including weekends or holidays). You will need a Medicaid number, which can be the mother’s number if baby does not have one yet. Ask your NICU social worker for paperwork to help with this.
For more information or to make a reservation, contact the TMS Reservation Line toll free at 1-866-572-7662.
If you think you will need to use TMS for return appointments, see your NICU social worker for an “out of area” signed referral form.
If your baby has Meridian or Medipass Medicaid and may have home going needs, you might consider applying for a different form of Medicaid or a new doctor. Contact your NICU social worker or discharge coordinator. To request a change, please contact DHS toll free at 1-877-347-5678.
You may be eligible
WIC (Special Supplemental Nutrition Program for Women, Infants, and Children) provides formula for infants, nutrition for babies and mothers, nutrition education, and referrals to health care at no cost to pregnant, breastfeeding and postpartum women, infants, and children up to age 5.
Please know that the NICU does not have formula for you to take home when your baby is discharged. You can use food stamp benefits to get formula. If you do not get food stamps or WIC, you will need to buy formula until you can enroll in these programs. If your baby is going to be in the NICU for several weeks, it is best not to wait until the time of discharge to get on WIC. You should go as soon as possible to your local WIC clinic or to UI Hospitals & Clinics WIC Clinic to enroll your baby (and yourself).
UI Hospitals & Clinics WIC Clinic
Clinic hours are from 8:45 a.m. to 3:45 p.m. on the second and fourth Tuesdays of the month. Call 319-356-6042 to schedule. Call 319-356-7416 on clinic days. This clinic can certify you and your baby so that you have coupons at time of discharge. Ask your NICU social worker for the WIC paperwork.
Your Local WIC Clinic
If you cannot wait until the UI Hospitals & Clinics WIC Clinic is open, you can get on WIC at your local office.
To make an appointment, call 319-346-6042 if you live in Johnson, Washington, Iowa, or Cedar counties. Call toll free 800-532-1579 and ask for the number of your local clinic for other counties.
Explain that your baby is in the hospital but you want to get her/him (and yourself) on WIC.
The table below lists the income guidelines. Applicants with a gross income less than and including the amounts listed are income eligible for WIC services. If your baby has Medicaid you are automatically eligible for WIC.
|For each additional
Breast Pumps: Breast pump rental is not covered by Medicaid but may be obtained through WIC. If you have WIC, contact your local WIC office. There is a breast pump in each patient room. Pumps are at the Ronald McDonald House and Rossi Guest House, and the NICU Family Lounge. There are a small number of pumps available for loan. Please ask your baby’s nurse if you need a pump.
Additional resources to assist you
From places to stay to things to do, there is a lot to consider now that you have a newborn baby in the NICU. Learn more about resources available to you to improve your stay.