Receiving a new diagnosis for your medically complex child can be a complicated experience. Many of us come home from that doctor's appointment with either overwhelming amounts of information or little to nothing, ready for clarity. In either case, reality usually entails hours hunched over a computer in pursuit of understanding what’s happening and what the next steps are.
To help you prepare for supporting your medically complex child at home — and all the emotions that come along with it — we’ve put together some essential steps for navigating this new phase of life while providing support for your child, with the help of experts, including parents, doctors, social workers, and special education advocates. 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. We also spoke to several parents of medically complex children: Undivided Navigators Heather McCullough and Gabi Gangitano, who shared tips and wisdom for fellow parents, and Undivided Public Benefits Specialist Lisa Concoff Kronbeck provided insights into what public resources are available to support families raising medically complex children.
Note: The terms “medically fragile” and “medically complex” are often used interchangeably, though they carry different meanings and connotations. In this article, we will be using the term “medically complex” to describe children who need ongoing specialized care and to be inclusive of both conditions.
Leaving the hospital and walking in the front door to the home where you will now be parenting your medically complex child may be a relief or may be fraught with anxiety and overwhelm — not to mention about a million questions. Either way, we have some tips to help you prepare to return home. There will likely be a lot to adjust to, not only organizationally in the home, but emotionally and mentally as well. Before anything else, make sure to address anything that requires immediate attention. This may include:
You’ll also want to handle anything that helps put your mind at ease, such as grabbing bins to start organizing or researching. Both urgent tasks and those that help you adjust to this new reality deserve your attention.
Not every pediatrician is going to be equipped to care for your child’s needs, especially if your child is going home with equipment. If you already have a pediatrician you trust, stick with them. But if not, Dr. Kesavan recommends finding a primary care pediatrician within a hospital system. “A primary care pediatrician associated with these big hospitals is usually helpful and gets most of our NICU follow-up babies.”
She continues to tell us that this is where discharge coordinators continue to play a role, even after discharge, because sometimes families come back and want a new pediatrician because the one they have isn’t a good fit. A discharge coordinator can help navigate the process of changing the family’s insurance so that they find someone new. “We've had parents who unfortunately had a pediatrician who wasn’t very familiar with the multiple things happening for a baby. And the pediatrician in the community may not even have the resources to help these kinds of families.”
You can also explore complex care clinics, like this one at Stanford, which your discharge coordinator can help connect you with.
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.
If your child has been in the NICU (or anywhere in the hospital) and you’re transitioning home, the process can feel especially overwhelming. Dr. Kesavan explains that parents can rely on discharge coordinators to help them ease into the transition.
If you’re leaving the NICU, you might have access to a high-risk infant follow-up team, such as the one at UCLA, where Dr. Kesavan is medical director, and the NICU liaison team’s goal is to make sure the baby is developmentally progressing and to get them into early intervention services. If the high-risk team is unable to help, parents can also call the NICU, as both teams stay in communication.
Dr. Kesavan tells us that their follow-up clinic is the “next step for parents, as a resource from within the hospital, to help make sure that they are feeling well supported during this transitional process, and getting them whatever they need, whether it's equipment, follow up appointments, or referrals.”
Some hospitals may also provide care coordination to make sure the parents are making the necessary appointments and have phone numbers and resources to reach out to in case they have questions. Find our tip sheet of the most essential questions parents should ask before leaving the hospital here! If you need this kind of care coordination outside of a discharge coordinator and are not linked to the NICU, reach out to social work to find support.
Here are some general tips from Undivided Navigators Heather and Gabi for when you first walk through that door:
Remember that your child is still the same child you love — whether your child is a newborn, an infant, or an older child. You may need time to find a new “normal,” grieve, or find support. You may feel like shutting down once the enormity of being at home sets in. It may take time to adjust, and that’s okay.
You’re going to feel a lot of feelings — and sometimes, taking a walk won’t help. As Heather tells us, the first time her daughter came home from the hospital was anxiety-provoking because she didn't feel her child was ready to come home. While the hospital staff suggested she take “deep breaths,” Heather reminds parents that their experience is valid and can be considered chronic medical trauma. It’s not a one-and-done incident; it can feel like ongoing trauma, and sometimes common suggestions like deep breathing or taking a bubble bath aren’t going to cut it. You might need more, and it’s okay to ask for help when you do.
Remember that you know your child best — regardless of what others think or say, whether that’s family, friends, or professionals. “I think there is a strong tendency to really rely on the professionals, but it is important to remember you know your kid best and know what they may need,” Gabi says. “But what if I really have NO IDEA what they need?” you may be asking yourself. Even if you don’t know on day one, that’s okay; you will learn what your child needs, what works, and what doesn’t, even if you need some help getting there. No one will know your child like you do, and it’s important to trust your gut.
Prepare to make a lot of changes — to your home, the rooms in your home, where things are kept, your daily schedule, etc. Where are you going to bring your baby or child when you come home? For example, where are you going to keep all your child's medication? Where is your child going to sleep? Are they going to be near you in your bedroom, or will they sleep separately? Heather tells us that her child had to sleep in the living room because that was the most central place and the easiest to access.
Start looking into ways to access support — online, in person, wherever you can. You don’t have to be home alone or feel alone in any of this. As Gabi tells us, “I just started inviting our preschool SDC [special day class] parents for coffee chats after drop off to be able to discuss things or just to vent and feel sane. Everyone felt so heard at these meetings! That weekly coffee continued and eventually led to after-preschool park days. Eventually, it became so big that I created a Facebook group that grew to hundreds of members.”
Get into the three circles — Regional Center, the school district, and insurance (more on these coming up!).
Chances are you’re going to be coming home with a lot of documentation, paperwork, and information. Your first instinct might be to just throw it all onto the kitchen table and leave it for later when things “calm down.” However, sorting through all the paperwork and getting organized is going to help save your sanity in the long run. Given the accumulation of records and data over time, a dependable “second brain” organization system that works for you can ease your mental burden. You can experiment and find what suits you best. Here are some tips from our experts:
Start keeping track of everything. You can even start this in the hospital if you have a newborn. Heather, for example, has a place for essential requested documents, such as feeds, action plan, implant information, medication list and schedule, vaccine list, and a health summary. Heather adds other important documents like vaccination records, doctors’ notes, prescriptions, and visit summaries. Customize your approach and experiment with different methods, just as Heather did, to establish a system tailored to your needs.
Heather shares, “I was sticking the hospital menu in there, I put the drug things in there, I put all the little things they gave me in there. And I used page protectors so that they were all separate and I could easily pull things in and out. And I still use that and take it to doctors’ appointments, surgeries, inpatient stays, and appointments.”
Already using the Undivided platform as a digital organization system? Fantastic! The platform has a digital binder designed to store a variety of documents and keep them secure and organized. Simply scan or take a photo of each document and choose where to file it.
Keep a file box for all your child’s records to add things like Social Security paperwork, a physical therapy evaluation, or anything you don’t need frequently.
Consider getting a virtual fax account such as TrustFax if you don’t have access to a fax machine. Many agencies are still in the twentieth century as far as technology goes and will require you to send and receive information by fax.
Sign up for online access to your child’s hospital records. Many hospitals have an online portal where families can access medical records, message doctors, schedule appointments, and pay bills. If your child is 12 or older, you might need to fill out additional paperwork to get access to your child’s records due to CA state privacy laws. If your child is approaching age 12, you should look into your providers’ policies.
Sign up for online access to your insurance claims. Most insurance companies have an online portal where you can view and submit claims.
Collect all the documents and materials needed for your chosen setup and begin organizing. Take a moment to review what your provider gave you as you file each item, including any next steps or notes. Right now, your focus is solely on reviewing and digesting the information as you file it away. Note: make sure you have paperwork on file to access your child’s charts after they turn 12. CA state privacy laws kick in when a child turns 12, meaning that parents can get locked out of their kids' records otherwise.
Now that you’ve settled into being back home and have all the urgent tasks taken care of, creating a safe, practical, and loving home for your child will be next on the list. Medically complex kiddos usually require a high level of daily medical care, and organizing your home to allow for this will make all the difference. It can be hard getting used to being at home with your child after a long stay in the hospital. We have some tips to help.
Getting your home ready for your child is very important in ensuring a safe and supportive transition. Start simple and expand as you notice what might be helpful. For more inspiration, review these five strategies and listen to how Heather organizes her home:
Here are a few things you can do:
Having dedicated space(s) for your child’s medical supplies is vital for daily care and keeping track of everything. Organizing supplies can be as intricate or as simple as you’d like. Here are some ideas for how to accomplish this:
You may want to get cube organizers for your cabinets and closets that you can customize for your needs. You can add labeled bins in the organizers and have easy access to supplies. All of these cabinets can be in the central part of your home.
Think about where your child will spend most of their time when you arrange supplies. If your child uses oxygen, you can have a concentrator set up in the child’s bedroom and a tank set up in the living room so that you don’t have to carry the heavy equipment from room to room.
If your child has medications that require refrigeration, consider buying a small refrigerator for the child’s room or set aside a dedicated area in your family refrigerator. You don’t want to have to shuffle leftovers around to find your child’s medicine.
A clear plastic over-the-door shoe organizer is a great way to store commonly used supplies in the child’s bedroom. If you have nurses or other family members helping take care of your child, the clear plastic pockets make it easier for everyone to find what they’re looking for.
Make sure to consider how you’ll monitor supply levels and restock containers. For example, Heather has a Sunday routine where she takes stored supplies and uses them to restock a crafting organizer that acts like a weekly pill box for medications, syringes, and other supplies. She also sets out her child’s daily medical supplies in “24-hour bins,” not unlike setting out their clothes for the day.
You may want to use craft drawers to organize medication. You can add colored labels to the drawers that indicate what’s in them. Heather tells us that she prepares and pre-draws a week of medications beforehand — so that they're ready to go — and if she ever questions whether she gave her child her medication, she can go back and count how many syringes are left in the drawer. You can also use craft supply boxes to house other supplies. Heather uses one for first aid, another for respiratory medication, another for things needed on the road, such as extra doses of Tylenol and ibuprofen, and another for a day's worth of medication that goes in her diaper bag.
This is especially true for medication. You don’t want to be wondering whether you gave your child their medication, if you or your significant other gave the medication, or both, or neither. Without a clear system, things can get lost in the shuffle of communication. And what if the pharmacy is backordered and you don’t have what you need? “If you aren't on top of reordering things, you're going to find yourself in trouble,” Heather says. Here are a few things she has (that you can also get!) to stay on top of medical supplies:
Hospitals can also help if you’re short on supplies. Try contacting the social worker at the hospital and telling them that your medication shipment has been delayed and that you need help. More often than not, they will make sure to get you whatever you need to get by for a few days. For example, formula, oxygen cannulas, different medical supplies, extra doses of medication, etc. If your kid's medication is backordered and you're on the verge of running out, you can also ask the pharmacy to partially fill an order.
Whether you’re coming home from the hospital or you just want to stay prepared in case of an emergency, it’s a good idea to have a hospital “go-bag” at home full of the essentials that you and your kids will need. For a parent go-bag, you can add items such as slippers, pillows, soap, and “anything that makes you feel better,” Heather says, “because otherwise you just start to lose yourself.”
You can find affordable bags that work well for medical parents because they have tons of pockets and zippers. For your child’s go-bag, you might consider including medical supplies and tools, along with other essentials like extra clothes and food. Find a more comprehensive list in our article How to Prepare for Your Child’s Extended Hospital Stay.
You can decorate and add helpful supports in your home to make things easier for you, your kids, and everyone else who might enter your home. Here are some things we recommend:
As much as we can prepare, sometimes life happens — emergencies, blackouts, power outages, etc. And if our kids require electric medical equipment, it can be a very scary experience. Heather tells us that in the event of such an emergency, you'll want to be able to immediately take action. But long before an emergency actually happens, you’ll want to plan ahead and know exactly what needs to be done. Being prepared will cut down any wasted time and reduce safety risks. Here’s what she recommends:
Technology is a great place to start when finding resources to help you and your family at home. There are apps for everything nowadays, especially if you’re wondering how to manage all the medical visits and different providers. Here are some of Heather’s and Gabi’s recommendations:
Organization apps can be a lifesaver when you have so many things to keep track of and coordinate. As Heather says, “I never really had the need for something like this before my daughter came along. I could remember things pretty well for appointments, and I would keep a note in my purse with important dates. But now there's way too much to juggle — we've got appointments all the time, therapists, school, IEP stuff, refilling all 15 meds that she's on, keeping track of oxygen tanks and when they need to be refilled, when supplies are being delivered so somebody can be there to bring the 15 boxes in the house so that nobody steals them, etc. There are so many things to keep track of when you have a kiddo like this that you may not think of. It's really overwhelming the first couple of years.”
Not surprisingly, caring for a medically complex child can come with added expenses and needs. But support is available, if you know where to look for it. Managing funding and public benefits can feel daunting for any parent. If your child is medically complex and has a developmental disability, there’s a lot to read on and digest, such as financial aid for medical expenses, utilities, and program referrals, Medi-Cal waivers, Regional Center eligibility, and more. 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.
As we cover in our article How to Prepare for Your Child's Extended Hospital Stays 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 you’re leaving the NICU, discharge coordinators, social workers, and case managers can help you connect to in-home nursing if needed. 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. Read more in our article How to Navigate In-Home Nursing for Your Child.
The thought of traveling with a medically complex child may seem daunting. And while it may require more care and planning, especially for the unique challenges that may arise, it isn’t impossible. Here are some tips from our expert sources and parents to help you and your family travel safely.
Communicate with your care team
Prepare extra medications and supplies
Plan all the logistics of your trip
Help your child prepare
Listen to Heather share her personal tips on travel, from packing to stocking up on supplies.
Support systems are essential for coping with stress and managing life, growing with you and adapting to your needs. Your support system will likely be composed of three categories: daily support (reminders, calendars), medical support (in-home services), and emotional support (groups, friends and family, self-care). Here are some questions to ask yourself while getting started:
As Heather says, “Be kind, let yourself feel the things, then pick yourself up and move on to the next day,” Heather reminds us. “I would never say it's easy, but you'll get there, right? Like, I'm smiling now and I'm working for a company that helps other families and I love being the mom of my medically different children. But five, six years ago, when she was born, I was a puddle of tears, not knowing which way was up, not knowing what to expect, [thinking,] ‘How do I do this? Am I going to be able to do this? How do people do this?’ It's been a long journey but it's so worth it.”
Find more tips, insights, and resources, read our article about establishing support systems and supporting your mental and emotional health when you're the parent of a child with a disability.
