How to Get Medi-Cal If Your Baby Is in the NICU

When your baby is in the NICU, all the logistics of insurance and state programs are probably far from your mind — you’re focused on making sure your new baby has what they need. Many of us at Undivided have been through this, so we know the emotional toll of being thrown into a whole new world to navigate. We also want you to have the peace of mind that your child’s medical needs are being covered, and that starts with enrolling in funding programs as soon as possible.

What is Medi-Cal, and why would a baby need it?

In California, many children and adults with disabilities rely on Medi-Cal (the state Medicaid program) for vital care services and expenses that are not available through private insurance. Many parents might not consider Medi-Cal when their child is still a baby, but babies can indeed qualify for coverage.

Even if your baby’s NICU stay is fully covered by private insurance, it may still be worthwhile for you to establish Medi-Cal eligibility as soon as possible, especially if your child is expected to experience developmental delays or ongoing medical care needs after hospital discharge. For example, if your child has extensive home health care needs, you may wish to apply for private duty nursing and/or in-home services, both of which are usually not covered by private insurance but may be covered under Medi-Cal. Additionally, if you require home medical equipment and/or supplies for your child (home oxygen, tube feeding equipment and formula, etc.), as well as ongoing therapies and treatments, Medi-Cal can potentially cover out-of-pocket expenses after your private insurance pays its share.

For a newborn in the NICU, there are several potential paths to full-scope Medi-Cal (meaning Medi-Cal with the full range of services offered, not just emergency services). Not all children will qualify, but these are the avenues we recommend pursuing to determine whether your child may be able to access Medi-Cal.

The fastest and most common way to qualify for Medi-Cal is based on household modified adjusted gross income (MAGI). Many children will qualify for MAGI Medi-Cal even if their parents don’t, as the income thresholds are higher for children under age 18 than for adults.

1. First, determine your modified adjusted gross income (MAGI). HealthCare.gov describes MAGI as “adjusted gross income (AGI) plus any untaxed foreign income, non-taxable Social Security benefits, and tax-exempt interest.” Adjusted gross income appears as a line on your tax return. For many families, AGI and MAGI will be the same or very close.

2. Next, determine your household size. Count only yourself and those who will be listed on your tax return as a spouse or dependent. Don’t count extended family members or roommates who live with you but file their own tax returns.

3. Now that you have figured out your MAGI and household size, look at an eligibility chart. The top row of this chart from Covered California lists different percentages of the federal poverty level. Eligibility for various Medi-Cal programs is calculated as a percentage of the federal poverty level (FPL), which changes every year and is adjusted based on household size. For children, the threshold for Medi-Cal eligibility is 266% of the federal poverty level.

To determine whether your child will be eligible for MAGI Medi-Cal, find the corresponding row for your household size. If your household MAGI is lower than this dollar amount, your child(ren) should qualify for Medi-Cal based on household income, regardless of disability.

For example, for a household with two parents and two children, the household size is 4, and the children will qualify for Medi-Cal if MAGI is less than $82,992.

If your household MAGI is higher than the limit to qualify your baby for Medi-Cal, another potential route is through institutional SSI because parental income won’t be counted. Supplemental Security Income (SSI) is a need-based cash benefit from the Social Security Administration for children and adults with disabilities who have very low household income. If a child has a qualifying disability and remains inpatient for the whole of a given calendar month (e.g. in NICU, PICU, or other hospital ward), ONLY the child’s income and resources (assets and savings) may be considered for eligibility purposes as long as the child is hospitalized.

When a child (or any person) is in a medical facility, they can receive SSI-linked Medi-Cal for the duration of their stay, plus a short time after they are discharged. Read more about SSI for institutionalized patients on the Social Security website. The child will also receive SSI for the month in which they are discharged from the hospital. Be sure to notify the Social Security Administration immediately upon returning home so they can reassess eligibility to avoid any overpayments beyond the one month that your child receives the full benefit.

To qualify for SSI, a child’s disability must cause “marked and severe functional limitations” and be expected to last for at least 12 months or shorten the child’s lifespan. You can view SSI’s directory of childhood disability listings and eligibility criteria.

Note: For the first year of infancy, very low birth weight may qualify as a disability in and of itself within the parameters of SSI disability listings 100.04A (birth weight of less than 1200 grams) or 100.04B (the following gestational age and birth weight):

For more information about eligibility requirements for low birthweight and/or failure to thrive, please review the SSI eligibility criteria for these diagnoses.

How long after leaving the hospital can a child receive SSI?

From the month after the child goes home until they are 18 (or 22 if they are still in special education), their financial eligibility for SSI benefits will be based on their parents’ income and resources, which are “deemed” to the child (counted as the child’s). However, if a recipient loses SSI due to an excess of income or assets, the state is supposed to keep them enrolled in Medi-Cal until they determine whether the child is eligible for another state program, such as MAGI Medi-Cal, Medi-Cal with a share of cost, or a waiver that provides institutional deeming.

This page provides more information about SSI household income and resource limits. Note: If you become a parent provider of In-Home Supportive Services (IHSS) for your child, that income is NOT countable as income in the month it is received. However, it will count as a resource in the following month if it is still in your bank account. It will not be counted if it is transferred to an ABLE account or a special needs trust.

Applying for SSI is not a fast process; it can take several months, especially if the child’s disability is not in the SSI’s directory of qualifying disabilities (linked above). This approach will be most useful for children who are anticipated to be in the hospital for an extended period.

Regional Centers are a statewide network of local agencies that serve children and adults with developmental disabilities as defined by California’s Lanterman Developmental Disabilities Services Act (usually called “the Lanterman Act”). Regional Centers also provide early intervention services to children from birth up to age 3 who either have a developmental disability or are at risk of developmental delay. Clients are assigned to their local Regional Center by zip code. Regional Center will not perform any assessments while your child is in the NICU, but you can apply once your baby is discharged.

Early intervention vs. Lanterman Act services

Early intervention services are governed by the Individuals with Disabilities Education Act (IDEA), the same law that governs special education for school-age children. Eligible infants and toddlers who apply for Regional Center services are automatically assigned to the early intervention program or “Status 1.”

Services for Regional Center clients aged 3 and older are governed by the Lanterman Act and assigned “Status 2.” For a child enrolled in early intervention, the designation of Status 2 typically happens when the child turns 3, if they continue to be eligible for Regional Center services at that time.

However, a child under age 3 may need services and supports that are only available under the Lanterman Act and not through early intervention, such as respite or the institutional deeming waiver for Medi-Cal (discussed below). In these cases, the Regional Center can change the child to Status 2 early if the child has a diagnosed developmental disability and meets eligibility criteria. The Regional Center usually will not make this determination early unless the parents request it.

Medi-Cal waiver for Regional Center clients

One Regional Center-linked support that is not available under early intervention is the Home and Community-Based Services for the Developmentally Disabled (HCBS-DD) Medi-Cal waiver. Also known as the “institutional deeming waiver,” the HCBS-DD waiver allows children who are Regional Center clients to receive Medi-Cal without regard to family income if they meet the criteria for admission to a state facility for individuals with developmental disabilities.

A child must be eligible under Status 2 in order to be referred to the waiver. Children under age 3 must also have at least two special health care conditions or medical needs in addition to their developmental disability. The child must be receiving at least one funded service from the Regional Center.

Applying to the Regional Center is definitely not the fastest or most straightforward route to Medi-Cal coverage, and the Regional Center generally will not assess until the child comes home from the NICU. But for children with diagnosed developmental disabilities who are home from the hospital and do not qualify for the institutional SSI rate, for SSI based on household income, or for MAGI Medi-Cal, the Regional Center may be the most reliable and feasible path to Medi-Cal enrollment. See our article about applying to Regional Center to get an idea of the timelines involved in the process.

Most children who are diagnosed with a significant disability at birth will be eligible for early intervention services through the Regional Center. However, for children whose diagnoses are exclusively medical and not developmental (e.g. muscular dystrophy or childhood cancer), Regional Center services will end at age 3. For these children, the HCBS-DD waiver is not an option.

Fortunately, there is a separate waiver for individuals who meet the criteria for admission to a state-funded nursing or hospital facility. To enroll on the Home and Community Based Alternatives (HCBA) waiver, a person must have complex medical needs requiring round-the-clock care or be dependent on technology for an essential bodily function (such as a feeding tube or ventilator). This waiver has a significant wait list (at present there are over 4,000 people waiting to be enrolled), but priority goes to children and to individuals waiting to come out of hospitals and nursing homes.

If your baby is expected to have an extended NICU stay, this is the time to get them on the waitlist for the HCBA waiver. To apply, visit the DHCS directory of county waiver agencies and contact the agency for your county.

We know this is a lot of information to digest, but you don’t have to take the next steps on your own. In addition to asking your hospital discharge worker and/or social worker for help getting your child set up with one of these programs, the Undivided digital platform has step-by-step guides for applying for each of these avenues to Medi-Cal. You can ask an Undivided Navigator for 1:1 support throughout the process. As you navigate this time in the NICU, remember you’re not alone. There’s a community waiting to support, guide, empower, and listen.