Appeal type: Medical necessity
Decision: Overturned

Diagnosis: Lennox-Gastaut syndrome
Treatment: Consumer Directed Personal Assistance Services 98 hours per week
The insurer denied the Consumer Directed Personal Assistance Services 98 hours per week.
The denial is overturned. 

The patient is an male child with medical history significant for Lennox-Gastaut syndrome with medically refractory epilepsy, attention deficit hyperactivity syndrome, autism, thalassemia minor, abnormal gait, anxiety, and global developmental delay. He has daily seizures despite multiple anticonvulsant medications and ketogenic diet. He has multiple seizure types, including epileptic spasms, multiple atonic seizures, myoclonic seizures, atonic tonic seizures, absence seizures, and generalized convulsions. He has a seizure management plan in place with detailed seizure precautions, emergency seizure treatment including supplemental oxygen, post-seizure monitoring, and instructions for contacting EMS. He has been hospitalized for seizures, including status epilepticus. He is minimally verbal with impairments in fine and gross motor skills, he lacks safety awareness, and he is incontinent of urine and stool. In addition to requiring monitoring for seizures, he must also be monitored for aspiration and injury should he fall during a seizure. He lives with his mother, who works full time during the week and every other weekend, as well as his college-aged sibling. 

The patient's skilled nursing needs include the following: constant round-the-clock supervision with maintenance of seizure precautions and implementation of the emergency seizure plan during seizure activity; application of supplemental oxygen during seizure activity; implementation of his ketogenic diet; administration of multiple anticonvulsant medications; monitoring for aspiration; and assistance with all activities of daily living above and beyond what would be needed by a typical child his age. 

The patient currently receives 128 hours/week RN/LPN services.  The request is to switch these services to 98 hours/week CDPAS program.

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 medically fragile little boy has numerous medical issues as a result of and in addition to his medically refractory seizure disorder (Lennox-Gastaut syndrome) and autism as detailed above. He can never be without supervision because of the complexity of his seizure disorder and the danger that it presents to him. His routine care and seizure management are far beyond what can safely be provided by a trained layperson caregiver. He requires the skills of professionally trained caregivers, people with experience and expertise in managing complex seizures within the context of his global developmental delay, autism, and ADHD. While he is currently receiving 128 hours of services weekly, during the week when his mother is working, he is only receiving 16 hours/day of services. His complex health issues affect him round-the-clock, requiring constant monitoring with necessary interventions at any hour of the day or night. While it is not unreasonable to expect the family (mother and older sibling) to help with the more custodial tasks, they are not adequately trained or experienced to provide for his 24 hours a day 7 days a week complex medical needs. Consumer Directed Personal Assistance Services at the requested 98 hours weekly are medically necessary and appropriate. Anything less places this child at unnecessary risk of morbidity.