By Amanda Moore, CEO, Angelman Syndrome Foundation
Recently, I had the opportunity to provide testimony on behalf of the Angelman syndrome community — not only as the CEO of the Angelman Syndrome Foundation (ASF), but as a mother to a 9-year-old son who lives with Angelman syndrome. I spoke because an issue has come to light that could significantly impact families’ ability to access enclosed safety beds, a piece of medically necessary equipment that many of our children depend on for safety, health, and survival.
The Centers for Medicare & Medicaid Services (CMS) proposed to create a new A-code for what has been referred to as “Safe Place Bedding.” While this may sound like a technical or administrative change, the real-world implications are anything but abstract.
Safety Beds Are Not Furniture — They Are Healthcare
For families like mine, an enclosed safety bed is not a luxury or a convenience. It is a critical part of our child’s healthcare, delivered in our home.
My son has seizures, significant motor challenges, and very limited safety awareness. Before he had an enclosed safety bed, nighttime was a constant medical emergency waiting to happen. He would try to stand or climb without balance, seize in his sleep and jerk toward the edge of the bed, or wake suddenly and wander disoriented in the dark. I slept on his floor, on the couch outside his room, or in a chair just to listen for movement — constantly asking myself, “Is this the night something terrible happens?”
We weren’t a family that needed better bedtime routines. We were a family living in a constant state of nighttime medical crisis.
When my son finally received an enclosed safety bed, everything changed.
He had a truly safe place to sleep that protected him during seizures, prevented falls, and allowed him to move without launching himself to the floor. Most importantly, he could rest. And when he finally slept, his entire healthcare story began to change.
With consistent, safe sleep:
- His seizures decreased
- He could attend therapies without exhaustion
- He could participate more fully in school
- He could make progress — not because his condition disappeared, but because his body and brain finally had the chance to recover
This bed didn’t just improve his sleep. It improved his health, his safety, and his quality of life.
Why CMS’s Proposed A-Code Is Concerning
ASF, alongside many other advocacy organizations, has serious concerns about CMS’s preliminary coding approach.
First, the requested A-code is based on a single product and fails to represent the full category of enclosed safety beds that families rely on. These beds are not interchangeable, and different children require different designs based on medical and safety needs.
Second, creating a non-DME code risks disrupting existing coverage structures that are currently working. Many families today are able to access safety beds through established pathways. A sudden shift in coding could immediately eliminate coverage — not gradually, not hypothetically, but overnight.
Third, this approach introduces the risk of nationwide confusion among payors, suppliers, clinicians, and families. Confusion in coding leads to denials, delays, inconsistent coverage, and families left in crisis without answers or alternatives.
And to be very clear: if coverage is removed, families cannot simply “find another way.” These beds cost thousands of dollars and are not optional. Without coverage, many families will face increased emergency room visits, more injuries, more hospitalizations, and, for some, the heartbreaking reality of institutionalization because it is no longer safe to care for their child at home.
Our Core Ask to CMS
We urge CMS to protect patient access to safety bedding by not finalizing its preliminary coding decision to create a new A-code for Safe Place Bedding, and instead to defer any final coding decision for safety bedding until a later date.
A deferral allows time to bring forward additional data, clinical perspectives, and family experiences that clearly demonstrate that:
- Enclosed safety beds prevent injuries and hospitalizations
- They reduce overall healthcare costs by supporting safe home care
- They are essential medical equipment for a defined, vulnerable population — not optional or interchangeable items
The Human Impact Behind the Policy
Coding and coverage decisions may sound technical, but they determine whether a child sleeps safely at night, whether a family can remain intact at home, and whether the healthcare system’s broader investments — medications, therapies, education supports — can actually succeed.
As I shared in my testimony, I ask decision-makers to see this issue from the floor of a child’s bedroom at 2 a.m., when a seizure hits and there is no margin for error.
Behind every policy decision is a child.
Behind every code is a family.
My son deserves to sleep safely in his own home. Every child like him does. And we will continue to speak, advocate, and stand together to protect access to the equipment that makes that possible.
