We all got the crash course in genetics 101 in high school biology, but the role genetics plays in the lives of our kids is far more complex. You might be asking yourself questions like:
- What role does genetics play in my child’s development?
- Are all genetic conditions hereditary?
- Will genetic testing and counseling help me better understand my child’s condition?
- Why does my child need genetic testing if they already have a diagnosis?
- How do I even pay for genetic testing?!
Whether you have a newborn or an older child who never received genetic testing, there are good reasons to consider genetic testing regardless of a child’s age or diagnosis. For children without a diagnosis, testing may reveal a genetic condition, rule out some genetic conditions, or provide other information that can help guide providers in managing their treatment. For children with a diagnosis, parents and providers may turn to genetic testing for additional data to help them understand the child’s symptoms and treatment options. But most families aren’t offered genetic testing, or are offered limited panels. How do you advocate for more?
If you’re thinking about stepping into the vast world of genetics and genetic testing but aren’t sure where to start, what the process will be like, or if it’s even the right choice for your family, we’ve got your ultimate crash course right here.
Genetics and genetic testing
While genetics can help fill in the gaps of information about your child’s condition, help you access targeted resources, placement, and services, and help you find a community, it won’t provide all the answers — or tell the full story of who your unique child is.
As Senior Manager of Clinical Services at Bionano Laboratories, Allison Ortega MS, LCGC tells us, there’s “no one genetic test that can tell us everything.” But it can definitely be a good place to start. Start by reading our Genetics 101 article, then head to Genetic Testing for Children with Developmental Disabilities and Delays for a deeper dive on genetic testing.
If you’re considering genetic testing and counseling, the question of how these services will be paid for (Insurance? Medi-Cal? Regional Center?) is probably a major consideration. When getting genetic testing covered by insurance, the most important thing a family can do is understand what it means to have in-network coverage. Find all you need to know how to get the most out of your plan benefits, from reviewing your deductibles to renewing your zeal for filing out-of-network claims, in our article How to Review Health Plan Benefits and Coverage.
Medi-Cal’s HCBA waiver
While genetic testing may be covered by Medi-Cal, Medi-Cal also funds in-home care for children who have complex medical care needs — such as being fed through a tube or using a machine to help them breathe — via the HCBA waiver. You may already know about Medi-Cal’s Institutional Deeming Waiver, which helps Regional Center clients enroll in full-scope Medi-Cal.
Medi-Cal’s HCBA waiver, on the other hand, is a small program that provides services to children who need access to nursing care at home because they have significant medical care needs and can’t qualify for Regional Center services. Read more about it in our article Home and Community Based Alternatives Waiver (HCBA).
Flying with a service dog?
Summer’s not over yet! Undivided account manager, researcher, and health plan services coordinator, Meg Keough, who has had her service dog Kristin for the last two years, gives us her tips and tricks for flying with a service dog! Read the highlights and watch the full Undivided Conversation with Meg in our article Tips for Flying with a Service Dog.
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Meg with her son Jack and their dog Kristin |
One Undivided parent shared with their Navigator, “The caregiver who seems to know about ‘all the resources’ has oftentimes either been at the right place at the right time, or has spent countless hours researching how to support their loved one. Not all parents find themselves in those lucky situations, which does not allow for equitable access for everyone. Undivided bridges that gap and provides access to the resources, tools and information needed to become, and stay, well-informed.”
Undivided Conversations: Socialization with Mary Falvey
Curious about how your child’s school can support their socialization? Join us Friday, July 26 at 12:00 p.m. PDT with Professor Mary Falvey from California State LA as we dive into setting socialization IEP goals, socialization tips for kiddos and parents, and more! Don’t miss out! Tune in at noon Friday for the stream on our Facebook page!
- Genetic testing may be part of confirming your child’s diagnosis. What are some of the benefits of getting a diagnosis? Hear from an Undivided parent on our YouTube channel→
- What if your insurance provider denies your claim for genetic testing that should be covered? Check out this advice on our Instagram→
- If your child receives Medi-Cal services through the HCBA waiver, what’s your best advice for other parents? Share in our private Facebook group→
- Have you had a positive experience working with a genetic counselor or testing organization? Give them a shoutout on our LinkedIn page→
