Appeal type: Medical necessity
Decision: Overturned

Diagnosis: Chromosome 12 deletion with spinocerebellar ataxia, spastic paraplegia with alternating hypotonia and dystonia, seizure disorder, autism, gastroparesis and visceral hypersensitivity
Treatment: Environmental Modification (EMOD)
The insurer denied the Environmental Modification (EMOD).
The denial is overturned.

The patient is a young medically fragile female child with complicated history: chromosome 12 deletion with spinocerebellar ataxia, spastic paraplegia with alternating hypotonia and dystonia, seizure disorder, autism, gastroparesis and visceral hypersensitivity, unable to tolerate enteral nutrition, excessive sleepiness, dysphagia and aspiration, unable to tolerate oral secretions, vesicoureteral reflux, global developmental delay with failure to thrive and sensory processing deficits, behavioral issues with lack of safety awareness and extremely harmful tantrums. She has a Hickman catheter for total parenteral nutrition. She has not tolerated enteral feedings since prior to discontinuing over a year ago.

The patient receives total parenteral nutrition continuously around-the-clock. She can stand for brief periods of time, but she is unable to ambulate in any way without support. She is frequently carried because of her difficulties with mobility. She cannot maintain safe body positioning and lacks motor coordination ability. She currently receives bed baths with no rinse shampoo and chlorhexidine wipes once per week. The patient lives with her mother and two sisters in a two-story home with one full bathroom on the first floor. Her mother is her primary caregiver. Her mother currently carries her to places where the wheelchair cannot fit. She has been approved for 70 hours/week of private duty nursing services, but there are no qualified nurses to provide her care. 

The requested Environmental Modification (EMOD) is medically necessary.

The American Academy of Pediatrics has published 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." (2)

The AAP [American Academy of Pediatrics] strongly supports preparing young people with special needs for the transition into adulthood: "the goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood." (2)

The family has requested that modifications be made to the bathroom to allow for safe bathing: remove the bathtub and surroundings to install a shower pan and tile wall as well as new ceramic tile on the floor and the shower floor; install a new shower valve with slide bar; remove the vanity and install a new vanity with wall-hung sink (re-routing the drain into the rear wall behind the sink); install a new appropriately-sized toilet; widen the entry and passageway into the main bath area, installing a new 36" solid pine door in its place; and finish the inside bedroom closet. The literature supports the importance of housing design on quality of life and independence of those with disabilities. Home modifications are generally prescribed to improve safety and/or independence. Changes to the built environment can reduce levels of disability, reduce healthcare burdens, and improve quality of life. This applies to children as they grow and work to achieve their functional best. Home modifications can improve function, safety, independence, learning, and physical wellbeing. It is also important for caregivers in terms of quality of life, fatigue, injury. The requested home modifications in this case are essential to facilitate optimal independence and prevent caregiver burn-out and injury.

Therefore, given the above, the requested Environmental Modification (EMOD) is medically necessary.