Hospital stays will be in-network for most health plans, and with their own billing departments, they will be adept at connecting with your health plan and getting everything started when you’re admitted. Leslie Lobel, Undivided's Director of Health Plan Advocacy, explains that in-hospital authorizations to stay overnight in the hospital are given in two- or three-day increments. Usually the billing department will be on top of that, but you can always reach out to check that everything is going okay or let them know if there is a problem.
If your child is in the hospital for a long time, you will likely soon reach the out-of-pocket maximum for your primary health plan, but you will want to be aware of what your plan has as the coverage for the benefit for hospital stay. They'll probably keep you authorized up to a certain point, but you should know what your percentage is past that authorization. That's where you want to make sure you have a secondary payer, whether a spouse’s insurance or Medi-Cal. If the hospital you're in accepts Medi-Cal, they will bill the primary and they'll bill your child's Medi-Cal. If you don't have Medi-Cal or a secondary plan, you'll have a dollar amount responsibility. That's where you're going to want to know how long you'll have that percentage and where you are in your out-of-pocket maximum for the year.
Can a family apply for Regional Center benefits when they are in the hospital?
If your child is medically complex and has a developmental disability, getting them Regional Center services is an important step in their care. A child is not going to be assessed for Regional Center services while they're in the hospital because other agencies are going to have the responsibility for providing services during your hospital stay. You will likely have to wait until they're discharged. But there are things that Regional Center can help with, especially when you head home. You can find more on this in our article about supporting medically complex kids at home.
California Children's Services (CCS)
CCS can also be a potential avenue of support, and it's especially helpful if a child doesn’t qualify for Regional Center services (because CCS is based on medical diagnosis and doesn’t require cognitive impairment). While primary private health insurance is always going to be the first in line, CCS and Medi-Cal can both come in as secondary insurance. As Leslie explains, if you have private insurance, CCS, and Medi-Cal, then CCS can act as a case manager for Medi-Cal. After primary insurance, it will go to CCS, then defer to Medi-Cal, then bounce back to CCS if needed.
Ask potential pediatricians if they are “paneled providers” with California Children’s Services (CCS), a state program that provides specialty medical care for medically complex children. CCS can pay for prescription drugs, medical equipment, and supplies - but only if the order is written by a physician who has gone through their approval process.
NICU TIP: consider getting your baby onto Medi-Cal through SSI
If you’re in the NICU for months, a big challenge will be getting your baby onto Medi-Cal if they're not already on it. One avenue that you might consider is getting your baby onto SSI, which can be a foot in the door to Medi-Cal, at least until they get discharged. As Public Benefits Specialist Lisa Concoff Kronbeck explains, if you have a baby who meets certain criteria, such as being born before a certain period of time or under a certain birth weight, they'll automatically be accepted for SSI. You can provide that documentation to SSI, and they can get your baby covered under Medi-Cal.
Once you’re out of the hospital and you no longer qualify for Medi-Cal because of household income, you can look to a waiver program for kids with disabilities. Find more information on waivers in our article Supporting Medically Complex Kids at Home.
In-Home Supportive Services (IHSS)
The IHSS program offers in-home assistance to care for a child with significant support needs. One thing Lisa wants parents to remember is that you can’t bill for IHSS. time if your child is in the hospital. If you know your child is going to be in the hospital for more than a few days, let your caseworker know. This is frustrating for many parents who can’t work full time because of their child's needs and are getting IHSS because of that. IHSS is one of the things that has to be dealt with when the child's in the hospital, so be aware that you’ll need to manage those benefits and make sure you're not tracking hours during that time.
It’s also difficult when you’re your child’s sole IHSS provider. “It's a difficult time,” Kronbeck says, “but the IHSS situation makes it a bit more difficult because even though the hours get suspended, you're still the one providing all your child's care and comfort and entertainment while they're in the hospital. The older they get, it's hard to coop them up, and they're more aware of what's going on.” This is another area of need where a child life specialist can help, by providing support in the context of helping your child cope with being in the hospital. Ask a social worker to connect you with a child life specialist if the hospital has them.
NICU TIP: you can get IHSS for a child 0-5
Have you been told you can't get In-Home Support Services (IHSS) for your child because they're too young? Confused about what your child may qualify for? Find all the details about applying for IHSS with a child under age 5 in our event In-Home Supportive Services for Ages 0-5.
Once you leave the hospital, a variety of programs in California can help with ongoing support for equipment, supplies, therapies, and in-home services such as respite. Our article A New Diagnosis: Now What? can help you explore your options for the benefits you may want to prioritize, such as Regional Center, Medi-Cal, In-Home Supportive Services (IHSS), California Children’s Services (CCS), and utility discounts.
A note on eligibility: medically complex children are more likely to be medically eligible for CCS (financial criteria aside), and they are also more likely to qualify for IHSS at a younger age, primarily in the categories of paramedical services, respiration, and transport and accompaniment. If your child has oxygen, a trach, an ostomy bag, a feeding tube, CPAP/BIPAP, or similar devices, or has a lot of specialist appointments and therapies, these can all translate to IHSS hours. Protective supervision may also be available in limited circumstances if the child relies on life-sustaining medical devices and interferes with their functioning due to cognitive impairment.
If your child is medically complex and has a developmental disability, getting them Regional Center services is an important step in their care. If your child was in the NICU, however, they were likely not assessed for Regional Center services, which is something you will have to pursue upon discharge. Children under age three with a diagnosed developmental disability or risk of developmental delay can receive early intervention services (which may include everything from speech and occupational therapy to funding for durable medical equipment); after age three, eligibility requires a diagnosed developmental disability that constitutes a substantial disability for that child or adult. An extended stay in the hospital, premature birth, or exposure to anesthesia multiple times in infancy can be potential risk factors.
For more on applying for Regional Center supports, read our article How to Get Started with Regional Center.
If you’re in the NICU for months, it’s important to apply for SSI and Medi-Cal as soon as possible, even if you have private insurance coverage. If your child has Medi-Cal as secondary insurance, the hospital can’t charge your family for copays, deductibles, or co-insurance. Medi-Cal eligibility can be retroactive to 90 days before your application, so if you apply within the first three months, your child’s entire NICU stay can be covered. Here are a few things to note about SSI and Medi-Cal:
Both SSI and Medi-Cal are need-based programs. Many children will qualify for Medi-Cal based on household income – SSI has lower income thresholds and a resource limit, but some children will also qualify for SSI based on household income. There are special qualification rules that speed up the SSI approval process for low birth weight premature infants and other common NICU conditions.
Under SSI and Medi-Cal rules, a person who resides in a medical institution cannot have parental or spousal income deemed to them; only their own personal income (and resources, for SSI) are countable. Therefore, if a child is inpatient in a hospital for more than thirty days, the child can qualify for Medi-Cal and/or SSI based on their medical condition alone, regardless of family income (assuming the child has no personal income or assets).
If your child doesn’t have a developmental disability but will be leaving the hospital with an ongoing need for complex medical care (like a tracheostomy, a feeding tube, use of a ventilator, oxygen, etc.) — and you don’t qualify for Medi-Cal or SSI based on household income — you should apply for the Home and Community-Based Alternatives (HCBA) Waiver, formerly the “nursing facility waiver,” which provides full-scope Medi-Cal coverage and care management services to persons at risk for nursing home or institutional placement. Lisa tells us that there is a waiting list, so sign up as soon as possible. If your child has been in the hospital for more than 60 days and is still inpatient, they should be eligible for priority enrollment.
If your child has a diagnosed developmental disability and 1) is at least three years old OR 2) has at least two medical diagnoses or requires at least two nursing interventions (oxygen, feeding tube, breathing treatments, medications, etc.), they may be able to enroll in full-scope Medi-Cal regardless of parental income using the HCBS-DD waiver.
If your child is a Regional Center client, they may be able to enroll in full-scope Medi-Cal — which provides the full range of covered benefits, not just emergency services — regardless of parental income using the HCBS-DD waiver. The HCBS-DD waiver is only available to children who are eligible for Regional Center under the Lanterman Act, not to children enrolled in the Regional Center’s Early Intervention (age 0-3) program. Children are usually assessed for Lanterman eligibility at age three. However, if your child has a diagnosed developmental disability and has at least two medical diagnoses or requires at least two nursing interventions (oxygen, feeding tube, breathing treatments, medications, etc.), you can request that they be assessed for Lanterman eligibility early so they can be enrolled in the waiver. There is a separate Medi-Cal waiver for children participating in Regional Center’s Self-Determination Program, which is also only available to those eligible under the Lanterman Act.
California Children’s Services (CCS) can also be a potential avenue of support (for hospital and surgical treatment, medical case management, physical and occupational therapies, labs and imaging, and medical equipment), and it's based on the medical diagnosis, which makes it especially helpful for when a child doesn’t qualify for Regional Center services. Private insurance is treated as the primary avenue of funding. There are need-based eligibility criteria as well, but these are waived if the child has full-scope Medi-Cal with no Share of Cost.
Additionally, CCS’s financial eligibility also takes existing medical expenses into consideration; if you don’t qualify for Medi-Cal based on household income, you may still qualify for CCS if medical expenses exceed a certain percentage of household income. Finally, the CCS Medical Therapy Unit may provide therapies to children with certain diagnoses regardless of household income if the services are both medically and academically necessary. These services are generally coordinated through the local educational agency (LEA).
CCS will only cover services that are prescribed by “paneled” physicians. Usually hospital affiliated specialists are CCS paneled.
The In-Home Supportive Services (IHSS) program offers in-home assistance to care for a child with significant support needs. Some of the available services include:
A parent/family member can be paid as the care provider, or you can hire an outside provider. Each county has a public authority that handles administrative matters related to IHSS providers, including maintaining an IHSS provider registry to help recipients find non-family providers. In Los Angeles, the public authority is the Personal Assistance Services Counsel (PASC).
And remember, don’t be hesitant to explore the public benefits available to you and your child, even if you think they don’t apply to you or your child won’t qualify. There are may avenues for support, even if your child doesn’t have a developmental disability. That’s what they’re there for — to help support families who have members with additional needs.
If your child requires round-the-clock nursing care, check out our article How to Navigate In-Home Nursing for Your Child for information about how to find, hire, and train an in-home nurse.
As far as paying for in-home nursing, in some cases, Medi-Cal pays directly for nursing through managed care plans. In other cases, CCS pays for nursing if the need for nursing is related to the child’s CCS-qualifying condition. Medi-Cal is the only program that reliably covers home nursing. In the rare cases where private insurance covers home nursing, there are usually strict limits on how many hours are covered. Additionally, the definition of medical necessity for private duty nursing is usually far more restrictive in private insurance policies, so nursing can be denied for medical necessity under private insurance but still be medically necessary under Medi-Cal’s pediatric standards.
Full-scope Medi-Cal includes the private duty nursing benefit for children under age 21 through the EPSDT benefit (the bundle of additional Medi-Cal services that are available for children but not adults), so any child who has Medi-Cal based on family income can access home nursing without enrolling in any extra programs.
There are three waiver programs that can provide a child with Medi-Cal eligibility in order to access home nursing if their family income is over the limit. These programs also provide other services to adult recipients.
Regional Center waivers
The HCBS-DD waiver is administered by Regional Center for children with developmental disabilities. Contact your Regional Center caseworker to enroll in this program.
The SDP waiver is for Regional Center clients in the Self-Determination Program (SDP).
There is no waitlist for the HCBS-DD or SDP waiver. The state does not limit the number of people who can enroll in these waivers. Children who can qualify for multiple waiver programs should use the Regional Center waivers in order to get services without being placed on a waitlist.
The Home and Community Based Alternative (HCBA) waiver
The Home and Community Based Alternative (HCBA) waiver administered by regional “waiver agencies” for children who have medically intensive disabilities but not developmental disabilities. Children who have medically intensive disabilities and developmental disabilities who have been denied access to the HCBS-DD or SDP waivers due to Regional Center policies on children age zero to three can also qualify through the HCBA waiver.
However, the Regional Center is supposed to refer children aged 0-3 to the HCBS-DD waiver if they meet the criteria for eligibility under the Lanterman Act and have at least two health conditions or medical interventions. Because some service coordinators are unaware of this, a number of children who have been denied access to these waivers should have been enrolled. Ask to speak with a supervisor if your child has a diagnosed developmental disability and medical complexity and is denied enrollment on a Regional Center-linked waiver because they are under age three.
There is currently a waitlist to enroll in the HCBA waiver. The state limits the number of people who can enroll in the HCBA waiver. Children who are applying in order to access home nursing through Medi-Cal have priority over applications from adults, but children are still put on a waitlist before they can enroll in the program. Children can expect to be on the waitlist for several months before they can get services. Medi-Cal does not generally cover home nursing for adults outside of the HCBA waiver, so if your child will need private duty nursing continuing into adulthood, you will need to apply for the HCBA waiver before they turn 21. Ideally, apply when your child turns 18 to account for waitlist time in order to prevent a disruption in care.
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