A new diagnosis can feel like a lot

Dear new parent,

You may not be new to parenting, but if your child has just been diagnosed with a disability or developmental delay, you are likely new to disability parenting (what some call being a “special needs parent”) — a phrase that, as you’ll find with so many words, doesn’t come close to describing what it means to love a child whose strengths and needs now have a medical term attached to them.

That’s how our letter to a new parent of a child with a disability begins. We wrote it because many of us here at Undivided have been right where you are — whether our kids were just a few days old or already in high school. Suddenly, a new diagnosis and many big questions: where do I start? Who can actually help us? What services does my child need and how do we even pay for them?!

First, take a deep breath. You’re not alone.

You might be feeling devastated, scared, strangely relieved, or all of the above (sometimes in the same hour). Maybe you’re just going home from the hospital and have no idea how you’re going to pay for it all. Maybe you’re already asking referrals for providers to be on your child’s care team, like a developmental pediatrician. Or maybe you’re considering genetic testing.

When you’re ready, check out A New Diagnosis: Now What? to learn how to start building your support system, finding the right providers, and accessing services and funding. If you’re more of an auditory learner, or just a parent on-the-go, catch the bite-sized, AI-powered companion podcast episode instead!

For parents who want to dig deeper:

• Learn more about disability language (and how to talk about disability).
• Find support and community through our list of common childhood disability diagnoses and organizations that can help.
• Explore our list of books, TED Talks, and online resources to raise strong little advocates!
• Head to a disability conference this year!
• Use this calendar to celebrate neurodiversity and developmental disabilities days!
• Get personalized support for free! Start with Undivided and get matched with a Navigator for two free sessions, plus access to one-of-a-kind technology, resources, and expert guidance you won’t find anywhere else. Click here to get started→

⚠️ Undivided Updates: California Edition ⚠️

• IHSS. The Senate Budget and Fiscal Review Committee is reviewing Governor Newsom’s proposal to cap all IHSS provider hours at 50 per week, which would negatively impact families whose children receive more than 50 hours per week and might struggle to find a second provider. Speak out now — we’ve prepared a template letter here that you can share.
• Self-Determination. The Governor plans to cut millions from the Self-Determination Program next year. The Department of Developmental Services (DDS) has been tasked to come up with new “guardrails” to make the program more “sustainable,” but no details yet.
• Medi-Cal. A proposed change would limit savings for adults with disabilities to $2,000 ($3,000 for couples) by 2026, making it harder to stay eligible for Medi-Cal without an ABLE account.
• Steps to take today. This budget proposal is just that: a proposal. Speak out to your legislators urgently as the budget must pass through the legislature by June 10. Once passed, the changes will likely come into effect on January 1, 2026. Learn more about how state budget cuts and federal policy changes could reshape the future for people with disabilities in our latest articles covering both California-specific proposals and national updates.

One of our parent members told us, “[Undivided] is by far the best thing I’ve stumbled upon in terms of tools to help me better advocate for my son. Knowing I have somebody on my side who is an expert to help me when I need it is a game-changer for me. It gives me peace of mind and is such a stress relief.”

Last chance to RSVP for Special Education Updates: How Federal Proposals Could Affect Our Kids

With potential changes to federal education departments on the horizon, here to help us understand what’s at stake is Denise Marshall, CEO of the Council of Parent Attorneys and Advocates (COPAA). Join us for a FREE Zoom webinar on June 12, 2025 at 12:00 p.m. PT where Denise will go over what’s changing, what’s not, and what we need to know to protect our children’s rights. Even if you can’t attend live, you’ll receive the full recording and recap! Register for the free event here→

Join us for expert office hours

Have questions about Medi-Cal or your private insurance, or how you can use both together? Join us on Wednesday, June 11 at 12:00 p.m. PT for expert office hours with Leslie Lobel, Undivided’s director of health plan advocacy. If you’re an Undivided member, Leslie will be available on Zoom to answer questions about denials, appeals, preauthorizations, DME, and more. If you’re not an Undivided member yet, get started here to join us for office hours every week.

Tune into Undivided Conversations

Happening this week on our Facebook page:

• How Do We Pay For It All? Catch Undivided’s Director of Health Plan Advocacy, Leslie Lobel, and Undivided’s Public Benefits Specialist, Lisa Concoff Kronbeck, explain the funding resources available to parents and how to navigate them in this re-stream Saturday, June 7 at 10:00 a.m. PT.
• How Public and Private Health Plans Work Together. In this re-stream event on Sunday, June 8 at 10:00 a.m. PT, Lisa Concoff Kronbeck and Leslie Lobel, Undivided’s experts in public benefits and insurance, share tips on maximizing private insurance and Medi-Cal to cover your child’s needs while saving money.

 Should genetic testing be part of the diagnostic process for your child? Why or why not? Hear from an expert on our YouTube channel→

 Are you meeting with new providers? Get 5 tips for communicating with your child’s care team in this Instagram post→

 Summer weather is here — thank you to parents in our community for sharing safety reminders for individuals with disabilities! Join the discussion in our private Facebook group→

 Join us in our mission to keep families and providers informed so that kids with disabilities can get the support they need! Connect with Undivided on LinkedIn→