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Dr. Joni Bhutra: Navigating the special-needs system

Healthy Family

Posted: April 22, 2011 1:55 a.m.
Updated: April 22, 2011 1:55 a.m.
 

As a general pediatrician in Southern California, I have had the good fortune to meet many children with special needs.

Children of all types can fall within this category, but most commonly these are children with autism-spectrum disorders, seizure disorders, learning disorders and genetic syndromes/metabolic disorders.

Navigating the health care system as a doctor can even be overwhelming, so I am always humbled when imagining what these parents are up against.

Even more confusing, governmental services within California for these same children could be (and probably are) the subject of a 50-chapter book.

To help, I will try to pare down these two labyrinths in this one article.

The most important aspect of all of this is early intervention. Just like with your own health care, facing issues early on often helps in the long-run.

When you start to notice something different about your child, instead of “waiting for it to go away,” or “get better,” the more responsible action to take is actually to address it, and perhaps, nip it in the bud.

That’s why regular check-ups are so very important, because it gives both you and your primary care provider the time and space to address issues of development and behavior in a stepwise, organized fashion.

These visits also give parents and physicians more time to address basic questions, so don’t be afraid to ask questions about anything if you are concerned. Even videotaping your child’s different behaviors can help a clinician immensely, and open up a discussion about behavior in general. This is especially important if you think your child is having seizures, or even if you are just worried about how your child breathes when he sleeps.

If you feel like your questions or concerns are not being addressed, tell the doctor this.

Every doctor will agree with seeking a second opinion, so bring this option up. Everyone wants the same thing at the end of the day: the best care for your child  

Once you’ve brought your child to the attention of the medical system, we can either quell or validate your fears. At that point, the California government has some programs in place to help more fully evaluate even small infants in their development.

The most helpful is that of a regional center: www.dds.ca.gov/RC/RCList.cfm.

Regional Center is a government-funded program with locations all over California that offers advocacy, early intervention, home health care and counseling services, plus much more.

This is actually the best resource for any child less than 2 years of age.

If a parent has any concern about development, simply walking through the doors is the only referral you need. The regional centers are federally mandated to provide at least an assessment of your child.

For those with insurance, there are private institutions, as well, but a regional center is still the best place to start, as the assessment will be free.

After age 2, unless your child has autism or a severe seizure disorder, the best place to pursue developmental help is through the public school system.

In the same way, if you have a concern, schools are also federally mandated to assess your child and provide you with an IEP, or individual education plan.

Once they have provided this, if it states that your child needs speech therapy, counseling or medication for attention issues, etc., this document will mandate other governmental institutions to provide that service for you.

Also an IEP is a great tool even for pediatricians to understand the development of our patients; plan on bringing it to your next pediatric appointment.

Additionally, mainstreaming your child through the public school system can often do wonders for their development.

You can push them to perform in a group setting much more easily than any other mechanism. So for that child who seems to be behind, school itself, and the stimulation that goes along with learning, is often the best answer.

The services provided through the public school system can fall short of expectations at times, so pursuing further therapies in the private sector, if you have the resources, is also recommended.

If your child has special-needs, I do recommend living near a larger medical center, as larger medical centers bring many resources for patients of all ages around them.

Valencia is actually a great option, as not only are there amazing schools with great resources, but there are many large medical institutions just an hour’s drive away.

Finally, the Internet is a fine resource for parents, just make sure the information you find is credible, and not just feeding on fears or marketing ploys.

The American Academy of Pediatrics has a great website geared toward parents and families: www.healthychildren.org.

It’s packed with helpful information and even more resources for all of our amazing children.

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