If you’re leaving the NICU or otherwise heading home from an extended hospital stay, then the hospital's discharge coordinators, social workers, and case managers can help you connect to in-home nursing if needed. To get more information, we interviewed Dr. Kalpashri Kesavan, medical director of the UCLA Santa Monica NICU, director of the High Risk Infant Follow-Up Clinic at Mattel Children's Hospital, and associate professor at UCLA David Geffen School of Medicine; and Undivided Navigator Heather McCullough, who is also a parent of a medically complex child.
*Note: this article pertains to home health care provided by a licensed nurse (LVN or RN). To learn about In-Home Supportive Services (IHSS), which funds home care provided by non-medical caregivers, visit our article In-Home Supportive Services (IHSS) 101.
Dr. Kesavan tells us that in-home nursing isn’t the easiest resource to secure due to resource issues in the community, but when possible, coordinators try to get families nursing care for at least part of the day — such as an eight-hour nurse in the house to help parents navigate the care of their child. Nursing care is contracted through other agencies and through insurance companies, but other resources, such as lactation services, can be sourced through the hospital’s outpatient care.
What kind of medical conditions qualify a child to receive home nursing? In general, a child who needs medical help with an essential body function should qualify for home nursing, such as:
Hospitals don’t always arrange for nursing at discharge, and they don’t always tell families that nursing is available. If your child has one of the conditions listed above, you can contact nursing agencies directly and ask if your child’s condition qualifies.
There are several ways to find a nursing agency. You can ask your child's doctor for a list, you can ask other families locally, or you can search online for local agencies. Contact the agencies you are interested in and discuss your child's needs to find out whether they can provide the care needed.
A different doctor may need to sign off on the nursing paperwork depending on which program pays for the nursing care. The nursing agency will ask you for a list of your child’s physicians and will send their paperwork to the correct doctor. Once you have that, find out which nursing agencies are contracted with your managed care plan and reach out to them to ask for an evaluation for EPSDT home nursing. The hospital discharge team should be equipped to assist in this process during discharge. Nursing agencies have intake coordinators who can answer questions, even if you haven’t gotten a doctor’s order yet. Most nursing agencies have a waitlist, so it’s helpful to get on the waitlist of multiple companies.
You can check out this list of resources for finding a caregiver, posting the job on the platform of your choice, or trying to recruit nurses you’ve worked with in hospitals. This is also where those support groups come in handy! Check in with your fellow medically complex families to see whether they recommend a particular nurse or organization.
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.
The HCBS-DD waiver
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 Self-Determination Program (SDP) waiver
The Self-Determination Program (SDP) waiver is administered by the Regional Centers for children with developmental disabilities.
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.
Once you’re connected to services, how do you interview nurses and cope with them in your home? It can be overwhelming to try to find the right person to care for your child, especially when your child has medical needs.
Create a list of what you're looking for in a nurse
Heather tells us that first, parents can ask the agency for a list of responsibilities that the nurses can cover — generally, any task related to the care of the child. For example, “If the child uses a cup and a plate, the nurse can wash it and put it away. They are not responsible for doing the family's dishes. If the child soils their bed linens, the nurse can do that laundry, but they are not responsible for the family's laundry. Having a list of nurse responsibilities will help set reasonable and realistic expectations.”
Tell the agency exactly what you’re looking for. For example, if your child has respiratory issues, make it clear that you don’t want a nurse who smokes. Or if your child needs to be carried throughout the day, make sure you ask for a nurse who has the ability to lift a certain weight. In this process, remember that you don’t have to say yes to the first nurse who you’re connected with. Ask questions, feel them out, and see if they are the right fit.
Tips for interviewing
Heather tells us that when interviewing nurses, you’ll want to get an idea of whether they will fit into your home. “Sometimes personalities don’t mesh well, and that's okay. You can ask the agency to send more nurses to interview if you don’t mesh with a nurse. Assuming the nurse seems to be a good fit, you’ll want to discuss experience and skills. Have they had any patients in the past with your child's diagnosis? Are they knowledgeable? I try to stay away from anyone who seems stuck in their ways. Each child is different, and a good nurse will be able to adapt to that family’s ways of doing things for that child's individual needs.”
Make sure you talk about your family and how you need things done for your child. Ask them if they have questions or concerns and let them know if you have concerns. For example, “We have had nurses in the past refuse to give Timmy his bath at 8 p.m., but he needs his bath at 8 p.m. or he will not sleep well. Do you have any problems with giving him his bath at 8 p.m.?” This allows you to gauge their flexibility with your child's needs. Here are 10 questions when interviewing an in-home nurse for a child, plus 40 more you can ask a potential nurse or caregiver.
Establish a trial period
Once you’ve settled on a nurse, spend time with them and give them an “orientation” on your child. You can even prepare a booklet of important information about your child for the nurse. Of course, have a trial period and evaluate whether the nurse fits into your lifestyle and whether your child feels comfortable around them. After this trial period, you can make a final decision about sticking with the nurse or continuing your search for a better fit.
Having a non-family member in your home daily might be initially uncomfortable. Comfort levels with having in-home providers vary with each person, so make sure to check in with yourself and your family. As Heather explains, while nurses are there in a professional capacity, they can begin to feel like part of your family.
If you have other children, for example, you may want the experience to feel comfortable, not like another version of a hospital. This is something you can express to your nurse. For example, Heather tells us: “Our nurses are free to move about the house with our child (their patient), join in family activities, sit at the dinner table with us, and truly try to fit into the home. I have a basket of our nurses’ favorite snacks for them, and if our agency doesn’t require them to wear scrubs, I let them wear whatever they are comfortable in — sweatpants, leggings, or scrubs. But some families do prefer a much more professional environment, and that's okay, too. It is truly whatever works for your family, and there can be a lot of trial and error until you find what works.”
Addressing issues
If you’ve identified concerns or worries, you can begin to come up with solutions to address them. It’s a good idea to reach out to other families who have in-home providers, either to vent or to find coping strategies that have worked for them. Our Facebook community of parents can help by offering advice and recommending blog posts, articles, or YouTube videos where others share their experiences and how they cope. There are ways to make it feel more natural while maintaining your privacy, like setting boundaries. Here are some ideas to get you started:
Remember it's okay to find someone else if necessary
Heather adds that if a nurse makes you or your child uncomfortable, you can ask them to leave or call the agency and have them tell the nurse to leave: “This is YOUR home and YOUR child. YOU are in charge of your home and your family. It doesn't matter what it is — your personalities aren't clicking, your nurse is not understanding the care, they made a mistake that made you uncomfortable — it's okay to let the agency know and find a new nurse. You and your child need to feel comfortable in your home and with the care being provided.”
