Appeal type: Medical necessity
Decision: Overturned

Diagnosis: BiPAP respiratory support, gastrostomy tube feeding, genetic syndrome (trisomy 18)
Treatment: Respite Care, 864 Hours (144 Hours per Month for 6 Months)
The insurer denied the requested respite care.
The health plan's determination is overturned. 

The patient is a male child with a complex medical history including trisomy 18, dependence on gastrostomy tube feeding, chronic respiratory failure requiring bi-level positive airway pressure (BiPAP) round-the-clock, poor airway clearance, and global developmental delay.

He lives with his family who are trained layperson caregivers. He has been approved for round-the-clock nursing services, but seldom has full coverage, especially at night. The family is responsible for filling in for all the missing nursing shifts. There are nine other children in the family including an infant, and the mother is the primary caregiver for the entire family.

The patient's skilled nursing needs include continuous monitoring with pulse oximetry, round-the-clock BiPAP, gastrostomy tube care and feeding, medication administration including inhaled and enteral medications, airway clearance multiple times daily including cough assist and vest therapy, maintenance of skin integrity, and assistance with all activities of daily living. Respite care would include assisting the family in all non-medical activities and bedside monitoring so that the family can step away from the bedside.

At issue is the medical necessity for Respite Care, 864 Hours (144 Hours per Month for 6 Months). 
I overturn the health plan's determination, in whole.

The requested respite care hours (144 hours per month for 6 months) are medically necessary and appropriate.

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 young male child has numerous medical needs as a result of, and in addition to, his genetic condition of trisomy 18. With trisomy 18, every system is affected. The mortality rate is extremely high for the first year of life, between 75 percent (%) and 95% (percent) of affected infants, determined in part by the severity of the congenital anomalies. Palliative interventions have resulted in increased rates of survival beyond the first year of life. However, these infants continue to have immense and constant medical needs. This child has been approved for nursing services 24/7 but not all shifts are consistently filled. Without nursing services, the family is responsible for his constant monitoring and care. This is a very large family, including an infant and eight other children, and the mother is the primary caregiver for the entire family. It is not possible for the mother to be at his bedside constantly and be able to meet her own needs and the needs of the rest of the family. Respite care helps with non-medical care, someone that can be at the bedside to allow the mother to take care of the rest of the household while being available to administer medications or meet other medical needs. The requested respite services are medically necessary and appropriate.