Momvocate 101 Tips

There are a few tips and tricks that I have used in my Momvocate journey to ensure that my daughter gets the best care possible, as quickly as possible.  These strategies are really Advocacy 101, but will give anyone who is new  to navigating through complex insurance and health care systems a good foundation to build off of.  Full disclosure:  I have used all the strategies that I recommend here, and have been successful in getting better care, on a shorter timetable, than most other people.

Start with the fact that you need to understand your child's healthcare needs, and the medical professionals treating your child have an obligation to provide information in a way that you can understand.  This includes everything from the diagnosis, prognosis, chosen and alternative treatments, and why different tests are being performed.  You are not being a burden when you are asking for this information, you are being an informed healthcare consumer.  Additionally, with our rare disease kiddos it may be difficult to get a concrete diagnosis.  But often you need one.  For insurance purposes, and to get services from providers or the state, so push your provider to give you the most concrete diagnosis you can.

Along the same vein, ask for objective benchmarks to measure where your child is currently, and how your child can improve.  The more benchmarks you have, the more progress you are likely to see.  And you should have at least some objective benchmarks.  These can be anything from height and weight to eye contact and spontaneous gestures.  The important thing is that all of these benchmarks can be measured, and hopefully give you a picture of where your child is, and how they are progressing.

Finally, get all your child's medical records and make them easy to read.  For example, if you are trying to qualify your child for state services, read the medical records, highlight any buzzwords like "developmental delay" and "autism" so that the state employee tasked with screening applications can see exactly what they need to see.

For more information, please see my presentation on Being Your Child's Best Advocate.