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Supporting Medically Complex Kids at Home

Supporting Medically Complex Kids at Home

Published: Feb. 16, 2024Updated: Feb. 22, 2024

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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.

3 key takeaways
  1. Find a system that works for you to organize your child's paperwork and medical supplies.
  2. Learn what public benefits your child is eligible for, and apply for them as soon as you can to get help funding medical supplies and therapies.
  3. Take advantage of other parents' tips and wisdom when it comes preparing for emergencies and travel.

Coming home: easing into the transition

Handle the immediate

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:

  • Finding a pediatrician who understands your child’s medical needs
  • Scheduling follow-up visits or other appointments at the suggestion of your provider
  • Picking up or dropping off prescriptions
  • Ordering any necessary equipment or tools
  • Finding an area to temporarily house medical supplies and equipment

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.

Find the right pediatrician

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.

Transition out of the hospital

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.

Ease into being at home

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!).

Make sense of paperwork and medical information

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.

Undivided digital binder to organize documents for a medically fragile child

  • 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.

Find a home for everything and build routines

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.

Organize your home

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:

  • Get your home equipment ready before you come home; this way, you’ll focus on caring for your child, not on putting equipment together.
  • Clean your house thoroughly. Ask for help from family and friends, or hire a cleaning service.
  • If you are coming home from the NICU and have a pet, prepare them for your baby’s arrival. You can introduce them to clothing or a blanket with your baby’s scent.

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:

How to organize medical supplies at home for a medically fragile child

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.

Monitor refilling supplies and create a system that works for you

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.

Heather tells us, “If you don't figure out a system that works for you, it's chaos.”

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:

  • A durable medical equipment (DME) provider that sends medical supplies monthly.
  • Online accounts with your pharmacy. You can ask your pharmacy to sync prescriptions so that your prescriptions are ready on the same day every month.
  • Access to support groups or other families with medically complex members where you can ask for extra supplies ( usually another mom will have extra and ship it to you).
  • Organizations that redistribute supplies; you can reach out to them and have things shipped. Some examples: Joseph Thomas Foundation, Parker Lee Project, Cpath Texas, Oley Foundation (can help with some grants), and Healthwell Foundation (can help with some grants). Some places ship nationally and some are local only, so make sure you ask around your local community to find local ones.
  • A list on Amazon for medical supplies, just in case.

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.

Learn about equipment and tools

In addition to the tools and equipment suggested by your provider, you’ll want to consider what else might be helpful for you, your child, and your family. Take some time to research your child’s condition(s) and what tools or resources other families have found helpful. This includes medical and nonmedical items, like comfortable chairs, adaptive clothing, apps, or decorations to make things feel less intimidating. Dr. Kesavan explains how the hospital can help transition parents leaving the NICU with medical equipment, but this is also standard practice for all areas of the hospital:

Keep a hospital go-bag on hand

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.

Incorporate helpful supports

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:

  • Door signs that tell guests about your medically complex child. Here are some samples you can print out and use!
  • If your child uses oxygen, the DME will provide an “oxygen in use” sign. This alerts visitors to avoid igniting an open flame, and can also be critical information for first responders.
  • Adaptive clothing, toys, equipment, and school supplies
  • Toys that can reduce stress and anxiety and provide some fun. Some toys you can explore include squishy toys, Lego sets, magnetic tiles, and stuffed animals. Find some examples of off-screen activities here.
  • For life skills, daily functioning, and self-care, making tasks, to-do’s, and plans as visual as possible can help kids feel empowered. For example, Gabi suggests making a visual schedule with each task having a velcro backing to allow the child to pull off tasks from the list as they do them. Another tip is to have a visual calendar so the child can see the schedule of what’s happening that day/week/month. “Since [my daughter] constantly questions about what we’ll be doing next, we can refer to this to help her anxiety instead of hyperfocusing and asking the same questions over and over again,” Gabi says. Note, while many kids respond to visual schedules, it may not be something your child responds to, so keep that in mind as you explore.

Prepare for emergencies

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:

  • Check with your state for an emergency notification system for people with disabilities. You can ask your fire department, Regional Center, and nursing agency. Some states have alert systems that allow local emergency agencies to offer aid quickly to those who may need evacuation help or who may need assistance during a disaster.
  • Have an evacuation plan. Where will you head in an emergency?
  • Prepare supplies. Do you have a go-bag with extra medical supplies (at least 48 hours’ worth)? Have a go-bag stocked full of the supplies your child will need in case you can’t get help immediately.
  • Have a backup power supply, if possible, to power medical equipment. For example, external power banks, a generator, etc.
  • Have a weather radio for emergency alerts.
  • Download apps like NOAA and FEMA.
  • Have copies of emergency contact info and any vital paperwork you may need in the event that you are displaced from your home (e.g., insurance cards, provider information, and medical information such as diagnosis and medication and nutrition needs). Keep this in your go-bag.
  • Make sure you have a backup plan should your power supply run out. Can you manually feed your child with a gravity feed or syringe bolus? If so, make sure you have supplies for that. Remember to have oxygen tanks to back up an oxygen concentrator.
  • Talk to your fire department and find out whether they can support your child who may be using a trach/vent at home and can’t go to the emergency room in the event of an emergency. Also ask for a note to be added to your address in their dispatch system. The note can include your child’s medical condition so that first responders will have background information before they arrive.
  • If possible, have a landline phone with large numbers in the child’s room so that you can call 911 in an emergency.
  • Practice what you will say if you need to call 911 for your child. It’s easy to get flustered in an emergency and stumble over your words.

Use technology to help you organize

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:

  • Medical apps like O2 To Go!, which ​​calculates the amount of oxygen remaining (hours/minutes) in a cylinder. Baby Connect also helps you keep track of not only diapers, but also symptoms and behaviors. It's customizable and can be shared between parents, so you can use it to track medications, height and weight, g-tube changes, concerning symptoms, etc.
  • Calendar apps like Google Calendar for keeping appointments, coordinating family events, reordering medical supplies, or ordering medication.
  • Organizational apps like FamilyWall, which helps by sharing everyone’s schedules and activities, tracking grocery lists, planning for dinner, managing to-do lists, and locating kids when they are outside. Heather tells us she uses it for grocery lists, task lists, budgeting meal plans, and more. You can even have a collaborative calendar where you can color-code people and their tasks. It’s also great for coordinating homeschool schedules.

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.”

Public benefits and funding

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.

Getting Regional Center supports and services

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.

SSI, Medi-Cal, and waivers

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)

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.

In-Home Supportive Services (IHSS)

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:

  • Personal care services
  • Protective supervision
  • Paramedical services
  • Transportation and accompaniment to disability-related medical appointments, if an IHSS-authorized service is required on the way to, during, or on the way home from the appointment.

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).

10 most important things to remember about public benefits

  1. Get used to and embrace reading and researching. Educate yourself to empower yourself — you’ll feel more confident going in (and less intimidated).
  2. Talk to families who have gone through it!
  3. Don't take first no for an answer; you might need to appeal or apply again. Use your notice of action (NOA) to find out why you were denied.
  4. Application response time estimates are just that: estimates. Expect that it may take longer. However, certain processes have statutory timelines, and if they’re not met, you may have appeal rights.
  5. For things like IHSS, if retroactive benefits apply, apply for the program, then use the waiting time to do research.
  6. Keep a detailed record of the application process, including copies of application materials, copies of applications, dates you applied, and so on.
  7. Set reminders to call and check in on the status of your application. Applications can fall through the cracks, so it’s good to monitor the status.
  8. If you are in a financial crisis, don’t rely on these benefits for immediate assistance. Many benefits will note resources to use for immediate help.
  9. If your child is ineligible for a specific program, figure out whether there are exceptions (e.g. Medi-Cal waivers) or what other options are available to you.
  10. Consider all financial aspects, including Social Security, special needs trusts, ABLE accounts, and insurance. How Do We Pay For It All? Undivided’s Guide to Funding Resources gives a great overview of how these programs work.

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.

In-home nursing

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.

Traveling with a medically complex 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

  • Check in and tell your child’s pediatrician and medical/therapy team about your travel plans. You can even ask them if they have suggestions or tips regarding medication, supplies, etc. Get a letter of medical necessity for airlines for certain things like oxygen.
  • Ask your pediatrician for a letter detailing your child’s diagnosis, medical history, allergies, equipment, medications, needs, etc. Get referrals from your pediatrician beforehand, just in case your child needs medical attention while you are away from home. Ask whether they recommend or can refer you to a doctor or specialist in the area you will be traveling to.
  • Research and have on hand a list of all local hospitals, emergency rooms, medical centers, and pharmacies, as well as local DME dealers in case of an emergency that requires immediate access to medical equipment.
  • Have all emergency info (medication list, medical contacts, diagnoses, action plan, etc.) easily accessible in case you land in an ER while on vacation somewhere.

Prepare extra medications and supplies

  • Have all necessary equipment and enough spare supplies for all days while on vacation plus a few extras in case anything breaks. Check with DME to see whether supplies can be shipped to where you will be staying if necessary.
  • Have all medications and know where you can refill them if needed.
  • Sometimes you can draw up medication ahead of time, so check with the pharmacy about pre-drawing medication. Families commonly do this when traveling to make for less waste and to avoid accidentally misdosing due to sleep deprivation from the vacation. Heather draws 14 days at a time and stores them in clearly labeled plastic containers.
  • Find out whether insurance will cover medication if you are out of state or whether you will need to pay out of pocket. Check with insurance and your pediatrician ahead of vacation regarding 90-day/vacation overrides for medications so that you don't have to refill on the trip. If you’re traveling from state to state, your insurance may not cover what you need. Especially for medically fragile kids who are on Medicaid, which varies from state to state, out-of-state bills may not be covered unless it's an emergency. Heather suggests carrying paper prescriptions of things you may need.
  • If your child has oxygen equipment, take your new prescription with you so that you can get oxygen no matter where you are (it always requires a prescription).
  • Secure all oxygen tanks in the vehicle so they are not loose (do not leave tanks in hot cars). Find out ahead of time where you can refill tanks (typically they must be refilled at specialty pharmacies or DMEs and prescriptions for oxygen must be sent over ahead of time, and then you pay out of pocket for tank refills). Check with DME ahead of travel to see whether you can reserve a portable oxygen concentrator. (You can rent them but they're expensive.) If you have a national DME, you can check ahead to see if they can service your tanks and equipment where you'll be vacationing, too.

Plan all the logistics of your trip

  • Make sure you have accessible lodging arrangements at your hotel and/or vacation destination.
  • If you’re driving, plan stops around feeding/medication time. Make sure there is someone else in the vehicle who can administer feeds and/or medication so that the driver can focus on driving.
  • Keep a power converter in the car for extra equipment that can’t work with a USB cord, and charge all equipment before you hit the road. Take power banks with you and keep them charged (charge them in the hotel at night). Make sure you have the chargers for all equipment.

Help your child prepare

  • Take headphones to block out overwhelming sounds and iPads with headsets for entertainment.
  • Prime your child and talk about what will happen and what you’ll be doing. You can prime your child with a Social Story about your trip. Pull up pictures of where you’re going, such as the airport, the inside of a plane, hotel, and/or vacation rental. If you are visiting something new, such as a theme park, show them photos and videos of the inside and outside.
  • Create a visual schedule for your child to help them anticipate and prepare for the next activity.

Listen to Heather share her personal tips on travel, from packing to stocking up on supplies.

Support systems and mental health

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:

  • How do I want to be supported? A listening ear, or maybe practical things like reminders?
  • Do I want to use apps or websites for appointments, events, oxygen tank tracking, family life, etc.?
  • What supports could my child benefit from, outside of medical services?
  • Are there any online resources to follow that create a constant stream of tips, guidance, or insight?
  • What public benefits or services can I apply for?
  • What supports do I need that are essential, and what can wait?
  • Who should be on my child’s care team?
  • How can I create time for my own mental and emotional health, and what does that look like?
  • Who can I call when I just need to talk? A therapist, a friend, a significant other, or a family member?
  • What things can I say no to?

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.



Coming home: easing into the transition

Find a home for everything and build routines

Learn about equipment and tools

Public benefits and funding

In-home nursing

Traveling with a medically complex child

Support systems and mental health

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Adelina SarkisyanUndivided Writer and Editor

Adelina Sarkisyan is a writer, editor, and poet with an undergraduate degree in anthropology from the University of California, Irvine, and an MSW from the University of Southern California. Her fiction, poetry, and content have appeared in various mediums, digital and in print. A former therapist for children and teens, she is passionate about the intersection of storytelling and the human psyche. Sarkisyan was born in Armenia, once upon a time, and is a first-generation immigrant daughter. She lives and writes in Los Angeles.

Co-author: Ryn Carper, Undivided Researcher. Ryn is a creative problem solver driven by curiosity and challenges, passionate about using skills to make a positive impact.

Reviewed by

  • Cathleen Small, Editor
  • Brittany Olsen, Undivided Content Editor
  • Jennifer McLelland, Content Writer


  • 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
  • Heather McCullough, Undivided Navigator
  • Gabi Gangitano, Undivided Navigator
  • Lisa Concoff Kronbeck, Undivided Public Benefits Specialist

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Each piece of content has been rigorously researched, edited, and vetted to bring you the latest and most up-to-date information. Learn more about our content and research process here.
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