Heidi has a BS in Civil Engineering from Purdue. After the birth of her son Jacob, she elected to stay home to ensure his needs were met. Heidi is very involved in many organizations;last year she was appointed by the Governorâs office to be on 3 Medicaid Reform committees, looking at overhauling the entire Medicaid system.Heidi currently has an advocacy distribution list of over 2,500 members to promote awareness of the advocacy issues that affect children and adults w/ disabilities & empower parents. April 10, 2006
This is an example of a Letter of Medical Necessity Letter submitted by a Pediatrician for a child that was denied the Katie Beckett Waiver. Happy to say the child was reinstated. Thanks to Judy D. for this submittal and wanting to help other families......
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Dear J and Whom It May Concern,
This document is a partial summary of the current medical condition of, and treatment needs for K who has a diagnosis Mitochondrial Disease (Complex Type I). Her condition has resulted in profound hypotonia and developmental delay and requires caretakers with skilled nursing training continuously. Her weakness requires intensive therapy yet her lack of stamina is the limiting factor for its application. She would get some type of her six different therapies (OT; PI; speech ~ swallowing, trunkal tone hippo. etc) 5 or more days a week if her strength allowed. Her habilitative road has been one of long slow improvement and increasing durations to the maximum her condition will allow. With continued strength improvement. I hope that she will be able to tolerate therapy 5 to 7 days a week.
Swallowing is a particularly important issue because her lack of strength limits her here as well. Because she would easily give up chewing and swallow inadequately masticated food, she is a great risk for choking, aspiration, and inadequate caloric and nutrient intake from vomiting. Careful and skilled attention is absolutely essential and several significant gagging incidents have occurred.
Her four medications, which are oral, must be closely monitored during administration to make sure she actually does get them swallowed. Three of these medications are specifically for her mitochondrial disease and thus intended to improve her strength and her swallowing. The other medication is for seizures. Thus the circular nature of the medications administration and swallowing ability makes for slow improvement on an uphill road.
The purpose of this letter though is not to be complete and comprehensive in the description of K's condition (which would take pages and pages), but to preamble my most important and substantive point. Her condition is one where a setback as a result of inadequate skilled care, inappropriately monitored therapy, or the closest attention to the simplest of life's details could and would lead to a loss of muscle strength in any area that would be permanent and unrecoverable. For example, because she couldn't even pull up a light blanket to get warm during the night, she is at risk for exposure even in a temperature controlled environment. Muscle strength and function are significantly affected by cold, and for K, even this could lead to that permanent loss. In mitochondrial disease, once the muscle is damaged it is damaged permanently.
In summary, my point is that K is so very medically fragile and what ability has been
gained could so easily be lost. She requires only the very best skilled nursing at all times
(such as her mother and specially trained caretakers now provide). Her rehabilitative therapy needs to be at least 5 or more days a week as soon as her strength can be increased to tolerate it (which hopefully will be soon). Were is not for the skilled care she now receives, her condition would certainly necessitate treatment in an in-patient facility.
Sincerely yours,
Dr. S, MD