When your child has complex or higher support needs, it can be hard to know how to prioritize what they need first. These incredible kiddos often face challenges with things like speech, mobility, vision, schoolwork, behavior, and/or daily life skills, and it’s hard not to feel like you’re constantly playing catch-up. A new or co-occurring diagnosis can bring many emotions — fear, confusion, worry — and then there’s the mountain of tasks: applying for school services and public benefits, learning about equipment, figuring out therapies and specialists, reorganizing your home, finding the right accommodations and supports, encouraging independence as they get older, and somehow still finding time to breathe.
As parents, we want so badly to make sure our children are safe, supported, self-directed, and thriving at home, at school, and everywhere in between. It’s a lot, and it’s okay to feel overwhelmed. That’s why we lean on providers we trust, therapists who get it, other parents who have been there, and yes, even our kids themselves. As a mom to an incredible teenager with CP and epilepsy, I know the fear and stress that can come with watching your child struggle. Hang in there. They are way stronger than they should have to be. Together, let’s get them what they need to thrive.
With gratitude,
Lindsay Crain, Undivided Head of Content and Community
Meeting higher support needs at every stage
If you’re thinking, “Where do I even begin? What do I do next?” don’t worry — we’ve got you covered. Check out these resources to help you support and care for your kids, from diagnosis-specific 101s to navigating medical care to managing day-to-day needs.
Medical and diagnosis-specific:
- To learn how ID is assessed and diagnosed, IQ testing, school accommodations, and more. → Intellectual Disability 101
- To explore the medical, developmental, and social issues parents can expect for their child with Down syndrome, and where parents can find available supports. → Down Syndrome 101
- To learn about the early signs and diagnosis of cerebral palsy, recommended treatments, and more. → Cerebral Palsy (CP) 101
- To learn about diagnosing epilepsy, EEGs, managing seizures through medication or surgery, how to create a seizure action plan, and more. → Epilepsy 101
- To learn about the signs of autism, common therapies, and what to know about seeking a diagnosis. → Autism 101
- To explore the world of genetics and genetic testing, including where to start, what the process will be like, and if it’s even the right choice for your family. → Genetics 101
- For tips on reframing behavioral challenges in kids with disabilities, such as tantrums, school refusal, head banging, flopping, demand avoidance, and wandering off, to get to the root of what’s happening and help our kids regulate. → Behavior 101
- To help you prepare for supporting your medically complex child at home, we’ve put together essential steps for navigating this new phase of life. → Supporting Medically Complex Kids at Home
- To dive into the the different kinds of paraeducators and how they support kids in the classroom when accessing the curriculum and interacting with peers. → Paraeducators 101: Types of Aides and How They Support Students
- Discover AAC: finding the right device for your child, getting assessments, securing funding, and accessing training. → AAC 101
- For all things Regional Center: services offered, eligibility for your child, and how to get started. → Regional Center 101
- Get your IHSS questions answered, from what services are offered to eligibility to becoming a parent provider, and more. → IHSS 101
- To learn what DME is, how to choose a DME company, funding options, and more. → Durable Medical Equipment (DME) 101
Goals to add to your Undivided account → Add these goals to your Undivided account for step-by-step guides to help you get in-home nursing, become an IHSS parent provider, and more.
- Support my medically complex child at home
- Become an In-Home Supportive Services (IHSS) parent provider
- Prepare a request for a 1:1 aide
- Find an AAC specialist
- Explore Regional Center services
Is your child’s school closed due to fire damage? Review this advice from Undivided’s education advocates about how to move forward if your child has an IEP.
Join us for expert office hours
If you’re an Undivided member, join us for a live Q&A on Wednesday, January 22, at 12:00 p.m. PT with Undivided’s Director of Health Plan Advocacy, Leslie Lobel! Leslie will be available to answer all of your questions about insurance, including pre-authorizations, explanation of benefits, out-of-network claims, optimizing in-network coverage, and more. If you’re not an Undivided member yet, get started here to join us for office hours!
Undivided Conversations to watch → Reframing Behavior
Join us in this conversation with Ross Greene, PhD, clinical psychologist and author, who explains how it isn’t always obvious what the problem is when a child is exhibiting challenging behaviors. Greene tackles how parents have to think beyond the immediate behavior to identify the unsolved problem. Check out the stream on our Facebook page this Friday, January 17 at 12:00 p.m. PT.
One parent told their Undivided Navigator, “Thank you again for all your help and advice. Without your help, it would not have been possible. You make it so easy to find new venues and improvements that we never thought possible. You have made a huge difference in our lives and we thank you.”
We’re continuing to share resources for those affected by the fires in the Los Angeles area. See our parents-only Facebook group for the latest updates and resources that our community has found helpful→
Have you ever connected with a Child Life Specialist while your child is staying at the hospital? Learn more about what they do in this video from an Undivided parent→
If your child needs durable medical equipment (DME) for their health and safety, there are multiple funding sources that can step in. Check out the funding order in this Instagram post→
Stay updated on news in the disability community and how we’re getting involved. Connect with Undivided on LinkedIn→
