A New Diagnosis:
Now What?
Whether your child is one week or five years old, receiving a new diagnosis or news of a developmental delay is a lot to process, accept, and understand. It’s important to allow yourself time to sit with the information you’ve received and all the emotions that come with it. Remember: it’s normal and appropriate to feel scared, sad, or overwhelmed. Lean on your support groups — family, friends, and more — when you can. And when you’re ready, make time to explore the resources and benefits that are available to you.
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First Steps
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Where to Find Funding & Services
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Organizations by Diagnosis
First Steps
If your child has been diagnosed with, or is at risk of, developmental delays or disabilities, your pediatrician may have suggested you see a developmental pediatrician, or advised you to apply for Regional Center services. So where should you begin? What are your first steps in this journey toward helping your child grow to be their best self?
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Early Intervention Services
For years, research has shown that introducing small changes early on in a child’s life can have a big impact on their later development. Therefore, thanks to federal law, every state in America has a system to provide early intervention services free of charge to children between the ages of 0–3 who have been diagnosed with, or are at risk of, developmental delays and disabilities. These services include occupational therapy, physical therapy, speech therapy, feeding therapy, nutrition support, vision and hearing services, and more. Each of these is designed to give children the tools and support they need to work toward their developmental milestones, including their physical, communication, social-emotional, and cognitive skills.
In California, early intervention services are provided through the Early Start program, which includes Regional Centers, Family Resource Centers, organizations called SELPAs that support your local public school system, and more. For children over the age of 3, or for children who do not qualify for Regional Center services, support is available through the public school system as well as other agencies, which we’ll detail below.
To read more about early intervention, check out The 4Ws of Early Intervention.
“>What is a Developmental Pediatrician?”>
Developmental pediatricians (also known as developmental-behavioral pediatricians) specialize in evaluating and treating infants and children who are at risk of developmental delays, as well as children with developmental, behavioral, and learning disorders such as ADHD, autism, Down syndrome, and more. Developmental pediatricians can play a central role in your child’s overall care, providing guidance, referrals, and support, and helping coordinate care with your child’s other physicians, therapists, and educators. To find out whether your child could benefit from seeing a developmental pediatrician, see Developmental-Behavioral Pediatricians 101.
“>What do OTs, PTs, and SLPs do?”>
Some of the most important people in your child’s early life are the therapists who will help them work toward building the emotional, social, adaptive, and physical skills they’ll need to participate in their school and community. To help you learn about what therapies are available and how they might benefit your child, we’ve created a glossary that outlines each therapy type, as well as the various subtypes within each therapy. You can read our therapy glossary here.
“>What other medical specialists might my child see?”>
From audiologists to neurologists to developmental psychologists, here is an overview of the primary medical specialties that serve children with developmental delays and disabilities, with a description of the services they typically offer.
Where to Find Funding & Services
Medical and therapy costs, and other needs such as adaptive equipment, may be covered by your private insurance as well as the following organizations.
Your Health Plan
You may be used to weighing the cost of monthly premiums and annual deductibles, but you may not have looked into what your insurance will cover when it comes to therapies. Many health plans put an annual cap on the number of sessions they will cover each calendar year. Some plans authorize 24 per year, and some provide 30 or 50. If your child needs more than one of these services, it’s a good idea to call your health plan and find out whether the per-year limit is combined between services or if there is a separate count for each service — for example, you might get 30 sessions each of OT, PT, and speech. Many health plans also require pre-authorization for therapy services. If you can, submit a request for pre-authorization early, and keep your child’s therapy team in the loop on any documentation they will need to submit. Learn more in this helpful article, How to Review Your Health Plan Benefits & Coverage. If you need help understanding your plan or want support filing claims, the Undivided Insurance Services team can help.
Regional Center
A network of Regional Centers across California serve children and adults with developmental disabilities such as autism, Down syndrome, and cerebral palsy. They offer a variety of supports and services, including early intervention services, coordination of services, assessments, respite care for tired parents, and help identifying goals to help your child work toward independence in their community. When you find out your child has a developmental delay, the best place to start is with Regional Center. Because navigating the Regional Center system online can be confusing, we’ve broken it all down with a detailed list of services, information about eligibility, and more at Regional Center 101. We can also help you find your local Regional Center here.
Medi-Cal
Did you know that Medi-Cal offers several programs to people with disabilities, regardless of income, that may be able to help your family pay for therapies, co-pays, and more? Medi-Cal is California’s Medicaid program; while it is traditionally income-based, many people with disabilities are eligible regardless of income. Children with disabilities who are Regional Center clients may qualify for Medi-Cal’s institutional deeming waiver program, which can help cover copays and expenses that aren’t typically covered by private insurance such as durable medical equipment and medical supplies. To learn more about Medi-Cal eligibility, programs, and services, check out Medi-Cal 101 and Making the Most of Medi-Cal.
California Children’s Services (CCS)
CCS provides therapies, medical equipment, medical case management, hospital and surgical treatment, and more for children with CCS-eligible conditions such as congenital heart defects, hearing and vision impairments, chronic lung disease, diabetes, muscular dystrophy, cerebral palsy, and epilepsy. Like Medi-Cal, CCS services are provided on a needs basis, but there are exceptions! If a child receives full-scope Medi-Cal or accesses Medi-Cal through the institutional deeming waiver, CCS will not look at a family’s income. Children with specific neurological or musculoskeletal disorders may also apply for CCS’s Medical Therapy Program, which provides OT and PT free of charge regardless of income. It’s also important to know that CCS can be an avenue of assistance for children with significant medical needs who are not Regional Center clients. You can find more details at CCS 101.
For an in-depth look at how to find funding for hard-to-fund services, check out How Do We Pay For It All? Undivided’s Guide to Funding Resources.
Public School Resources
Once your child reaches the age of 3, they may be eligible for special education services through your local school district or education agency.
In addition to education, school districts can also provide therapies and equipment or devices a student may need. If you or your child’s doctor have concerns about their development, you can ask your district for an assessment at any time. A full assessment includes evaluations with a school psychologist, special education teacher, and any additional related service providers that are relevant to the student’s needs. (These can include speech, occupational, behavioral, vision, and physical therapists, and more). To learn more about school-based assessments, read IEP 101: Assessments and IEEs.
What is an IEP?
An Individualized Education Program (IEP) is a personal plan developed for each student aged 3–22 with an eligible diagnosis to outline the services and supports they will need to access a Free and Appropriate Public Education (at no cost to their family). IEPs are created annually by a team that includes parents/caregivers as well as administrators, educators, and therapists from the family’s local school and district. Does your child qualify for an IEP? What kinds of services and accommodations will they need? Learn more at What Is an IEP?
Organizations by Diagnosis
ADHD
Angelman syndrome
Autism
- Autism Society of LA
- Los Angeles Families for Effective Autism Treatment
- Kern Autism Network
- The Autism Community in Action (TACA)
Epilepsy
Hearing loss
Prader-Willi syndrome
Smith-Magenis syndrome
Vision impairment
Supporting all diagnoses
Your Navigator is your Partner at each turn
Every Undivided Navigator has years of experience supporting families raising kids with disabilities or parenting their own. Partner with an Undivided Navigator for a Kickstart to learn first hand what support feels like!