John Romano forwarded your email to me. I am a news reporter for the Times
and trying to figure out how we might follow up on this issue. We are
getting similar emails from other parents.
Would you be willing to have your and your daughter's story told in print,
with names and photographs?
And I am just getting up to speed here. What is the six month review you
are referring to?. Can you summarize what it is and why it is so arduous.
I absolutely would be willing to have our story told. We have been in print before while fighting to get care for Megan.
The six month review I referred to is what is known at the "recertification" that is conducted by the state appointed third party administrator (EQ Health).
Every six months the case is reviewed to determine as they refer to it "the appropriate level of care for the child".
In our case the documentation they request is repetitive and reoccurring. Essentially they ask you to recreate the wheel over and over again which to me is a huge waste of time and money that could be used better to provide the appropriate care and resources - example - more nursing hours where they really are needed. With the exception of one recertification we have always received a denial or decrease of some sort which then leads to the appeal process. Whether or not it reaches the formal hearing process depends on what the TPA comes back with when they review it AGAIN. Of importance many families do not have the ability or resources to fight this battle while surviving and caring for their child and/or other children and family to maintain normalcy. The entire recertification and appeal process is so arduous that it tasks the family emotionally, physically and monetarily as it takes time away from your job and other responsibilities. Personal and Work schedules for every member of your household is necessary to document your life activities otherwise they are not considered. I could explain more on this verbally as there is too much to write. Sidenote - I did not know this upon my first review or when certifying with AHCA for services in general. It was all about my daughter for the approval of medical necessity which is different from the number of hours. In our case the prognosis is not going to change so why not have annual review to make sure all of the previous approved services are still warranted. If I felt that something changed for the worse and I needed to ask for more in the course of time between recerts I would ask and document it regardless of what the stated recertification time is. I think that is what they ask you to do anyway regardless. However I do realize that there are cases that warrant a six month recertification.
Why does the state think the staff employed by the TPA is more qualified to say what amount of care a child needs instead of the physicians and specialists that actually know and treat the child? One question I had at a formal hearing that lasted approximately 3 hours in person to the "certified" physician employed by the TPA was: "Are you a specialist in my child's field of medicine?" The answer was no which I knew as there are literally a handful in the ENTIRE country. It would be like hiring an electrical contractor to assess a roof.
Megan has at least a dozen specialists that all have different areas to address. GI, Cardiology, ENT, Pulmonology, Nuerology, Audiology, Nutrition, Orthopedics, Physiatry, Primary Care, Metabolic and Mitochondrial specialist, etc.
For my specific case the level of care will not decrease as my daughters disease is neurodegenerative, progressive and chronic. Prognosis is set. Sadly there will never be improvement and there is no cure. I wish I could say differently. It is not a situation we relish or delight in. Receiving the "appropriate" services is not a luxury as much as it is a necessity for survival and quality of life for my daughter and the rest of our family. Remaining productive and successful in our life is what is necessary for all concerned and what is best for the state. If we are taken out of productivity then we are a burden on society - all of us. I would like to point out that my personal circumstances do not make us reliant on the state plan to assist us in any other areas of any of our needs. We even have primary health insurance in place for Megan and the state plan is secondary for the items that they will not cover - such as the nursing for Megan and her therapy when my primary plan is exhausted.
Please feel free to contact me. I appreciate your inquiry and interest on this topic.