How autism moms could change the world

Policy change for early intervention

Why does early intervention have to be so challenging? Why does it have to include jumping through so many hoops? Why are parents left guessing, unsure, frustrated?

Money- I think the real answer is money. Early intervention is so challenging because it costs money; money that insurance companies want nothing to do with.

We so heavy rely on the school district or funding from state/county programs that will provide any or some therapy to those children who are developmentally delayed. However, if you reach out to your insurance carrier with these concerns and try to privately locate and access assistance many and most time you are not successful.

What policy I want to see changed:

I’m advocating for having the development delay (DD) status added to the insurance claims category code so that children under 5 can begin to receive services prior to a formal diagnosis.

Let me explain

I think my daughter shows signs of a delay, maybe autism. When you complete the checklist at the pediatrician office and express concerns about a delay, you can get a written prescription or treatment plan for a development delay. The pediatrician refers the child for the therapy that could be tried to address the delay.

With this referral or prescription, an insurance company cannot deny services or coverage. If you want music therapy. Check.

Speech? Occupational? Physical?

Check. Check. Check.

Behavior therapy?


Equestrian therapy? Art therapy?

Yup. That too.

Any therapy that the doctor and parent discuss can be added to the treatment plan and covered by private insurance. You would still have to pay your crazy co-insurance, deductibles, and co-pays but the child would get access to therapy at a young age. Now, we have tried therapies and have collected data and feedback on the growth and development of the child; or lack of. Each year when you go to the pediatrician you review and renew your treatment plan. If it needed to be every 6 months, that would even be feasible.

At age 5 or kindergarten enrollment you have to begin the process of formal diagnosis. This is where you need the developmental pediatrician. So, no worries; those doctors jobs are not at risk. Currently, it can be a 6-12 month wait to get an appointment with a developmental pediatrician. Now, when you see this expert, you will have professional feedback from the therapy tried and any growth and success the child has had. What type of professional therapy and support may be needed after age 5? Now, you have data and measurable goals to use in education and therapy.

Even the has a stance on Early Intervention:

Intervention is likely to be more effective when it is provided earlier in life rather than later.1

“If it’s autism, waiting for a child to ‘catch up on his own’ just won’t work. Acting early can help a child communicate, play, and learn from the world now and for the future. It can also prevent frustration—so common in children with communication difficulties—from turning into more difficult behaviors.”  Pennsylvania clinical psychologist

The connections in a baby’s brain are most adaptable in the first three years of life. These connections, also called neural circuits, are the foundation for learning, behavior, and health. Over time, these connections become harder to change.1

Early intervention should not be difficult and it should not be expensive; we need it to be affordable for all. We need policy changes that allow young children with delays to access all the necessary therapies to help them develop and reach those learning benchmarks. Policy needs to change to make a billable code for private insurance that provides access to services. Autism moms know that getting a diagnosis is the key to accessing resources and we could all change the world for the future by demanding policy change.

Do you think we can change the world?

CDC information

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