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. Many of us on the Undivided team have been where you are now: trying to understand the medical terms that are supposed to describe our child, trying to figure out what to do next, trying not to fall apart under the weight of all of it. We want you to know that it is normal and appropriate to feel scared, sad, or overwhelmed. As parents who are now a few years further along in this journey, we would like to share a few pieces of advice that we hope will help you move forward.
We would also like to encourage you to lean on your support groups — your family, friends, and more — when you can, and to find other parents raising kids with disabilities. We can learn so much from each other! We hope that the Undivided community can become a source of support for you. Check out our private Facebook group just for parents, where you can ask questions and find support on this journey from other parents raising kids of all ages and with all kinds of diagnoses.
And when you’re ready, make time to explore the resources and benefits that are available to your child — from early intervention services like occupational and physical therapy to respite care. Here, you’ll find an overview of what your family may qualify for in California.
Building a support team
Some of the most important people in your child’s life are the therapists and medical providers who will help them work toward building the emotional, social, adaptive, and physical skills they’ll need to participate in their school and community. So where should you begin? What are your first steps in this journey toward helping your child grow to be their best self?
As Kathryn Smith from Children’s Hospital Los Angeles (CHLA) says in this video, start with your child’s pediatrician or a developmental pediatrician, who can help you look at the big-picture overview of your child’s life.
As you navigate the complex journey of building a great care team and getting the right support to meet your child’s needs, see our glossary of medical specialists who commonly serve children with developmental delays and disabilities, from audiologists to neurologists to developmental psychologists.
To learn more about the therapists who can help your child work toward developing gross and fine motor skills, communication skills, feeding skills, and more, read our therapy glossary.
Children age 0–3: Learn about early intervention services
If your child has been diagnosed with, or is at risk of, developmental delays or disabilities, your doctor may have suggested that you see a developmental pediatrician or advised you to apply for Regional Center 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. 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, and Special Education Local Planning Areas (SELPAs). If your child is under the age of 3 when they are diagnosed with a developmental delay, the best place to start is with Regional Center — scroll down to read more about Regional Center below. For children over the age of 3, or for children who do not qualify for Regional Center services, support is available through other agencies, which we’ll detail as well.
Where to find funding and services
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 medical specialists or therapies. Many health plans put an annual cap on the number of sessions they will cover each calendar year. 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 therapy. 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 Health Plan Advocacy team can help.
Regional Centers form a statewide network of agencies across California that 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. 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 (including eligibility criteria for children over the age of 3) at Regional Center 101. You can find your local Regional Center here.
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. Medi-Cal recipients may also be eligible for In-Home Supportive Services.
California Children’s Services (CCS)
CCS provides therapies, medical equipment, medical case management, hospital and surgical treatment, and more for children with 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.
You can also check out How Do We Pay For It All? Undivided’s Guide to Funding Resources for more information about resources available to help pay for your child’s medical and therapeutic needs.
Children age 3+: 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 provide therapies and equipment or devices that a student may need. If you or your doctor have concerns about your child’s 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 who are relevant to the student’s needs (such as speech, occupational, behavioral, vision, and physical therapists).
How an IEP drives services
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 best help them build on the strengths they already have and lay the groundwork for learning new ones? As you think through the kinds of support you want your child to have at school, remember that the most important part of this process is you, the parent. You know your child best, and you are a key member of your child’s IEP team! Learn the basics by reading IEP 101:What Is an IEP?
Finally, remember that school isn’t just about academics but also a place for your child to make friends and develop social skills. Be sure to check out our guide to socialization and inclusion for kids of all ages.
When you’re ready: Find out as much as you can about your child’s diagnosis
There is a wealth of information available from disability-specific organizations, from other parents, and from Undivided. We’ve compiled resources where you can learn more about some of the most common diagnoses.
At Undivided, we are always learning more from the families and professionals in our community. We hope you’ll join us as we continue to build our knowledge base and work to ensure that all our kids get the resources they need.
We also invite you to learn about disability culture with us. As you envision your child’s future, keep in mind how important it will be for your child to learn to express their needs and make their own choices. We’re here to support not just you and your child but your whole family.
Whenever you need one-on-one help, you can partner with an experienced Undivided Navigator. You’ll have someone walk beside you whose entire job is to ensure that you have the support you need and get the most out of our resource library. Get started by signing up for a free Kickstart here.