Appeal type: Medical necessity
Decision: Overturned

Diagnosis: Myotonic muscular dystrophy. 
Treatment: Personal Care Aide (PCA) services at 12 hours per day, 7 days a week for a total of 84 hours per week. 

The insurer denied coverage for PCA services at 12 hours per day, 7 days a week for a total of 84 hours per week. 
The denial is overturned. 

This is a female patient who has myotonic muscular dystrophy with substantial functional impairment that limits her ability to perform daily activities. At the time the Uniform Assessment System (UAS) report was completed, the patient was residing in an assisted living facility (ALF). She is currently living in her home and is receiving Personal Care Aide (PCA) services 49 hours per week. The patient requested increase of PCA services to 84 hours per week. 

The UAS report indicated patient is totally dependent for most Instrumental Activities of Daily Living (IADLs), except managing finances and medications (limited assistance) and phone use (setup help). For Activities of Daily Living (ADLs), it was noted the patient does not walk and is not transferred to the toilet (bedpan use only). She is totally dependent for bathing and toilet use; weight-bearing assistance for lower body dressing, bed mobility; independent setup help for personal hygiene, upper body dressing, and eating. Regarding the patient's cognition, her decision making capacity was noted as independent, and no memory impairment was identified.  She has history of anxiety with reports of feeling anxious, uneasy. There was no diagnosis of depression noted, but the patient reported feeling sad, depressed at times due to her health and her dependence on others for assistance. 

Myotonic muscular dystrophy is a progressive multisystem genetic disorder. There are two forms; type 1 and type 2 which have several common features, but are differentiated from each other by various clinical and genetic characteristics. Muscle weakness occurs in both types, with some differences such as the muscles more commonly involved in each type, and the severity of weakness. There are various systemic features in both types. Age of onset can occur from birth to early childhood to various ages of adulthood depending on type. Type 2 is generally a milder form of the disease with less severe disability, but patients can still have some mobility problems. There is no available history or medical records provided for review regarding the patient's type of myotonic muscular dystrophy (type 1 or 2), age of onset, or systemic effects. 

Considering the patient's medical history and substantial functional impairment, it is medically necessary and in the patient's best interest to have a caregiver present and available to provide assistance for ADLs and IADLs, including ADLs that can occur at various and unscheduled times throughout the day and night. Considering the patient is requesting PCA services 12 hours per day, and her husband is at work all day, it is reasonable to conclude that there are no informal caregivers who can provide care to the patient for 12 hours; but the other 12 hours of the day can be managed with informal caregiver support.  As per New York State (NYS) regulations for personal care services, assistance from informal caregivers is voluntary. The patient's husband is not home for at least 12 hours per day; no other informal voluntary caregivers are identified; and it cannot be assumed or expected that the husband can continue to pay privately for additional aide services. When informal caregivers are unable to provide necessary care on a consistent basis, then personal care services are indicated to provide assistance with daily activities when needed. 

The health plan did not act reasonably with sound medical judgment, and in the best interest of the patient.

The carrier's denial of coverage for the requested PCA services at 12 hours per day, 7 days a week for a total of 84 hours per week is overturned. The medical necessity is substantiated.