#InsuranceDeniedMe – Stand Up to Insurance Companies for Children with Special Needs

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Insurance companies are denying coverage for life-saving medical equipment for children with special needs at an alarmingly high rate. Whether this directly impacts you or not, it’s time to take a stand. Children’s lives are at risk.

Let’s look at the data. It’s a proven fact that children with special needs wander from safe locations, unaware of potentially dangerous situations. In a recent study, the National Autism Association collected data on missing person cases in the U.S. involving individuals with an Autism Spectrum Disorder (ASD) who wandered or eloped from a safe setting and were gone long enough to require media or police involvement. The conclusions were heartbreaking: of 808 cases, 139 resulted in death, 105 required medical attention and 309 carried a heightened risk of bodily harm.

These are just the reported cases. Parents and caregivers of children on the autism spectrum live with this fear every day and especially during the night when the family should be sleeping. According to a 2012 report in the journal Pediatrics, 49% of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.

Ten years ago, I faced this reality myself. I was in relentless pursuit of a solution to keep my own son, who has a diagnosis on the autism spectrum, safe at night from wandering and other self-injurious behaviors. When I could not find a solution, I created my own safety sleeper enclosed bed system designed for the safety of individuals who have sleep disorders or are prone to elopement.

While safety beds exist, they are unattainable by many families, even with medical insurance. I see insurance rejections every single day. Of the unconscionable denial reasons I have seen from insurance companies, here are some standouts:

DENIED: “It must be shown that other, less costly methods have been attempted and have failed to effectively treat the problem (Prescribing physician will be required to submit attestation document.) Documentation of alternative therapies used shall include the following information: date(s) used, duration of use, name of equipment used, results of use, number of injuries and type of injuries.”

This denial reason seems to expect a child would need to be injured before considering approval.

DENIED: “Enclosed bed systems are not a medical necessity and other room arrangements can be done to avoid injury. For example, the sides of the bed can be lined with pillows to avoid injury. If a hospital bed is required for medical reasons, then this can be lined with soft materials as well to avoid injury…A sleep safe bed is not medically necessary and items for the convenience or safety of recipient are not covered, therefore your request is denied.”

This denial reason suggests documenting injuries and placing pillows to soften a future fall. So what happens when this child safely lands, then wanders outside and into a nearby pool, street or other unsafe location?

We are the advocates for our children with special needs, and it’s time to take a stand and get access to the equipment we need. Fellow parents and caregivers, please join me. Fellow safety bed manufacturers and durable medical equipment providers, please join me in continuing this fight.

To each and every one of you who care about the lives of innocent children, please sign this petition. If this touches you personally, share your story: #InsuranceDeniedMe. Families across this country deserve coverage for life-saving medical equipment. Let’s show insurance companies that we are united and demanding change now.