We Need Help

I am in serious need of your help. My name is Ian Fletcher, my son was born on June 10, 2008, in September of the same year he was diagnose with a genetic disease called Spinal Muscular Atrophy (SMA). Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

Joshua is on 24 hour life support if he is taken off the ventilator for thirty seconds he begins to desat with his oxygen level will drop immediate, he has been Trach since January 13, 2009; he has to be suctioned frequently because he does not control his saliva, and he has an In/Ex-sufflator machine that helps him cough because he cannot cough on his own. Joshua is feed daily through a G-tube, and recently suffered a minor stroke.

The reason I need you immediate help is because Joshua attends Prescribed Pediatric Extended Care (PPEC) during the days. At PPEC Joshua is taken care of daily by a nurse, he also receives therapy treatment from a Speech, Occupational and Physical Therapist. On May 19, 2010 Keystone Peer Review Organization (KePRO) the Peer Review Organization (PRO) contracted by the Agency for Health Care Administration (AHCA) to perform medical review for the Private Duty Nursing and Personal Care Prior Authorization Program for Medicaid beneficiaries in the State of Florida, denied Joshua the opportunity for Joshua to continue to attend PPEC.

KePRO states that, “Based on the initial information provided to us by your home health agency, it has been determined that your medical care as described to us is not medically necessary, and the authorization request is denied pursuant to rule 59G-4.130 F.A.C. for the above dates of service/hours of service.