What is a parent’s role as a member of the service delivery team?
What parents need is access to accurate, impartial, evidence-based information with which to make informed decisions in the best interest of their child’s individualized needs. With ASD, especially with comorbidity (co-occurring conditions), developing a customized intervention plan based upon a thorough and accurate medical diagnosis and skills assessments is critical.
As an example, a child with ASD with co-occurring conditions of ADHD and Sensory, which is very common, might be receiving the following services:
Applied Behavior Analysis
Counseling / CBT / DBT, etc.
Because ABA covers a wide range of target skills, the ABA program might be working on the same targets as those that are being worked on by other disciplines. An example is language and communication, which is a huge part of any ABA program, which also falls under the speech domain.
So learning about who does what, why and how is something that parents must master as overseers of their child’s program. If you’re lucky enough to have access to funding and access to services, a parent’s role becomes a care coordinator. In order to be an effective care coordinator, you need information. Access to objective, accurate, data-based, actionable information so that you can make the best decisions for your child but also continue to act as a watchdog so that you can keep making the right decisions as your child continues to progress.
Yes, it’s great to have access to professionals, but as a parent, you must never fully rely on the opinions of service providers. You must take the time to validate the information.
NOBODY will ever be as vested in your child’s well-being and future as a parent. Even the best, most well-intentioned service providers will come and go. But you’re here to stay. You are the link to demand continuity of service when service providers transition.
It is your right to demand access to program information so that you can keep data on your child’s progress so that when you change service providers, your child doesn’t have to start all over again, relearning skills he/she has already mastered because the transition was handled poorly. Time is the greatest enemy. We can’t afford to have our kids go backwards relearning skills or equally as bad, to working on skills that are totally inappropriate. Not developmentally appropriate. Unfortunately, this happens too often.
As a parent, YOU HOLD THE KEY TO YOUR CHILD’S FUTURE! Don’t ever let anyone make you feel otherwise.