Appeal type: Medical necessity
Decision: Overturned

Diagnosis: Central Nervous System/Neuromuscular Disorder/Seizures
Treatment: Nursing Services (including Private Duty Nursing)
The health plan denied the requested skilled nursing services. The health plan's determination is overturned.

The patient is a female child with a medical history significant for Golgi Snap Receptor Complex Member 2 (GOSR2) related mitochondrial myopathy (extremely rare progressive myoclonic epilepsy 6), chronic respiratory failure status post tracheostomy tube placement, dependence on mechanical ventilation, intractable seizure disorder managed with multiple medications and ketogenic diet complicated by breakthrough seizures, arthrogryposis, and feeding difficulties status post gastrostomy tube placement. She is non-verbal and non-ambulatory. The patient is fully dependent upon caregivers for all activities of daily living. She is no longer able to sprint off the ventilator and requires ventilator support round-the-clock.
The patient lives with her parents, both trained caregivers, as well as her sister. Both parents work full time outside of the home. The father works every weekend as well as late hours during the week. The mother works a conventional work week and is responsible for school drop-off and pick-up. In the absence of night nursing, the parents alternate getting up every four hours at night to manage the child's needs.
Skilled nursing needs include gastrostomy tube care and feeding, tracheostomy care and monitoring of mechanical ventilation, airway clearance including suctioning and cough assist, administration of medications and breathing treatments, monitoring of pulse oximetry with the administration of supplemental oxygen as needed, maintenance of seizure precautions including administration of emergency anticonvulsant therapy, maintenance of skin integrity with frequent position changes, and range of motion exercises for arthrogryposis.
At issue is the medical necessity for the requested skilled nursing services.

The health plan's determination of medical necessity is overturned, in whole.

Based on clinical medical guidelines, private duty nursing services are medically necessary and appropriate for this child 130 hours/week.
According to the American Academy of Pediatrics Guidelines for Home Care of Infants, Children, and Adolescents with Chronic Disease, "comprehensive planning should minimize physical and emotional risk to the patient, adverse effects on family members, or unforeseen financial burdens." [1] Further, "the goal of a home health care program for infants, children, or adolescents with chronic conditions is the provision of comprehensive, cost-effective health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities." [1]
This school-aged female child has numerous medical needs as a result of and in addition to her history of rare and unique mitochondrial myopathy and refractory seizure disorder. She requires constant monitoring for aspiration and respiratory difficulties, seizures, and the need for supplemental oxygen. She is vent-dependent round-the-clock and requires aggressive airway clearance and bronchodilators to maintain a patent airway. Both of her parents are trained in her care but work outside of the home (a necessity to meet the family's financial needs and the need for health insurance). They are responsible for the house and its maintenance, the care of the younger sister, and maintaining an adequate sleep schedule so they can safely carry out all of their duties. A terminal event may not trigger an alarm in sufficient time to allow for emergency suctioning, trach change, or administration of anticonvulsant rescue therapy, particularly in the middle of the night. She must be closely monitored round-the-clock to allow for pre-emptive intervention. While it is reasonable to expect that her parents will be actively involved in her care, independent management of all her medical needs while also maintaining the household and working outside the home creates an unsafe situation for both parent and child. This child requires close round-the-clock monitoring for aspiration, seizures, respiratory needs. This is not custodial care; it requires active assessment and determination of medical needs. The requested hours of private duty nursing care (130 hours/week) are reasonable and medically necessary.