If you’re parenting a medically complex child, you already know that no two days look the same — and that the learning never really stops. You’re managing a care team, coordinating appointments, navigating equipment and supplies, learning a whole new language of acronyms and medical terms, and preparing for challenges most parents never expect to face. Some days it can leave you wondering: How am I supposed to do all of this? Is this really something I can manage? How do other parents make this work?
We know this is a lot to navigate, and how much relief there can be in hearing from other parents who’ve lived it too. With time, support, and the right information, families can build supportive routines, connect with helpful resources, prepare for emergencies, and create a life that feels more steady, connected, and workable for everyone involved.
From the hospital…
When your child is facing an extended hospital stay, life can suddenly feel like it’s happening within the walls of a hospital room. While there’s a lot that’s outside of your control, there are still ways to advocate for your child, stay involved in their care, and make the experience a little easier on your whole family. These resources can help:
- Read: how to prepare for your child’s extended hospital stay
- Advocate: tips for advocating for your child with medical professionals
- Print: grab this Hospital About Me printable that you can fill in and put up in the room so everyone who walks into the room knows your child’s name. Undivided members can now create an All About Me directly in your account in minutes! Find out how it works here, and get started here.
Number to note: 96%
Got an MRI coming up? Ask your hospital care team or child life specialist about the LEGO® MRI Scanner set. Designed to help kids explore the MRI experience through play, it’s already making a difference: 96% of medical professionals surveyed said it helps reduce children’s anxiety, and nearly half said it can reduce the need for sedation or anesthesia! Read more here.
To the home…
Going home is often the moment families have been waiting for, but it can also come with a whole new set of worries. How will you manage your child’s care on your own? What services, equipment, and supports will you need in place? As you settle into a new routine, these resources can help:
- Get started: tips on going home from the hospital with a new diagnosis
- Read: supporting medically complex kids at home
- Navigate: in-home nursing and durable medical equipment for your child
- Explore: funding support for complex medical needs in California
- Prepare: emergency-proof your child’s medical equipment setup
💌 Dear Undivided corner
Dear Undivided,
Can I get discounted accommodations to stay near my child’s hospital?
Sincerely,
Parent of a medically fragile kiddo
Dear parent,
Here are some tips to save money when you need to stay overnight near your child’s hospital:
- Try requesting housing from a Ronald McDonald House near the hospital. Use the Find a Chapter page to look up your area. Most Ronald McDonald House websites have a form or phone number to request free or low-cost housing for families of hospital patients. If the nearby Ronald McDonald house doesn’t have room, they may be able to help coordinate booking a hotel at a discount.
- Ask the hospital if any hotels nearby provide a medical discount. For example, the Stanford Hospital has a “Where to stay” page that lists local hotels with discounts for families of patients.
- If you are a California resident, see if your child qualifies for California Children’s Services (CCS). CCS can assist with a portion of costs toward a hotel stay. They can also assist with meal funds.
Love,
Team Undivided
Undivided Updates — June 2026
California budget
California legislators voted for a package that avoids many of the disability community’s concerns. While the legislators approved Governor Newsom’s mechanism to defer payment for $3.9 billion for schools, they rejected many of the proposals that the disability community was worried about — the Medi-Cal asset limit reduction, IHSS cuts, and changes to the Regional Center process and governance. They also approved a historic investment in special education. Now, we watch to see if the governor will sign it. Read more about these updates here.
Federal budget
On June 16, the US Department of Education announced the long-anticipated move of two important departments that support our families and children: OSERS to the Department of Health and Human Services (HHS) and the OCR to the Department of Justice. Although Secretary of Education Linda McMahon said that students’ rights under federal law will not change, many advocates and organizations are concerned that splitting these offices across different agencies could create confusion and make it more difficult for families to navigate support and enforcement.
On June 9, the House Appropriations Committee approved a spending bill that would cut US Department of Education funding by 10% for fiscal year 2027 while providing a slight boost to IDEA special education funding. The bill also includes small increases for the Office for Civil Rights and Head Start. Next, it will move to the House, who will vote on the whole bill, followed by the Senate. Read more about these updates here.
Office hours → Wednesday, June 24, 12:00 p.m. PT
If you’re the parent of a teen in California, join us for office hours with Transition Consultant Joanna Kent, who can answer questions about the transition to adulthood and public benefits programs for teens and young adults with disabilities. If you’re not an Undivided member yet, join here to participate in office hours→
Undivided Conversations → Streaming on Facebook and YouTube
How to Build a Care Team → Saturday, June 20, 10:00 a.m. PT. How do you collaborate with your child’s doctors, nurses, and specialists? Tune in to listen to some of the fiercest providers out there who emphasize the importance of family-centered planning and collaboration when building a care team for our kids.
Travelling with your medically complex kiddo this summer? Get travel tips from fellow parent and Navigator Heather on our YouTube channel→
How do Undivided Navigators help parents answer questions about all their children’s needs and services? Watch one parent explain on Instagram→
This week in our private group for caregivers: early intervention at UCLA, FASD mentorship, and more! Join the discussion on Facebook→
Undivided CEO Seth Besse says systems that are meant to support kids with disabilities are incentivized in the wrong direction. Read more on LinkedIn→
