The news has been full of stories about the need for ventilators for virus victims. Behind the scenes are those people who use them on a daily basis just to breathe. For users with respiratory failure living at home, typically the household would have two such as on a wheelchair and beside a bed; thus, if one stops working correctly that person would be far less likely to die within minutes having another nearby.
Deshae has used these for over 17 years, most recently through Louisiana State University System’s self-funded insurance plan, through a supplier that will remain unnamed but is owned by a bunch of investment partnerships managed by the Blackstone Group. But earlier this year after botching attempts to transition her to a vent from a different manufacturer, the provider declared, despite its contract with LSU, that it no longer would supply vents particularly to her.
About this time, one of Deshae’s vents began to malfunction, leaving her perilously with just one working right. With the provider declaring not only would it not replace that one but also that it wanted to take away her only good one, the insurance administrator scrambled to find a replacement provider. One stepped up to try to make the transition to a new kind of vent. Unfortunately, invasively ventilated individuals react very idiosyncratically to changes (even to different versions of their vents, much less a new kind), and the new vent didn’t work out for her.
Another provider carrying the same model of vent she currently uses expressed interest in filling the breach. However, it said it couldn’t yet because of the intense demand for vents at the beginning of April due to the pandemic, and it could be weeks before it could start.
This left Deshae a minute away from death at any moment, with the unprecedented demand for vents unhappily intersecting with the exact time she needed one. Into this gap help coalesced from disparate elements of state government and the nonprofit sector.
The Louisiana Department of Health’s Office for Citizens with Development Disabilities has worked with Deshae for a dozen years, ever since she qualified for waiver support for direct support workers then nursing care at home. It does not supply durable medical equipment, but officials who have assisted Deshae and learned of her plight volunteered, some 2,600 years after Moses parted the Red Sea about this time of year, to try to part the red tape.
With assistance from the Governor’s Office of Disability Affairs (the head of which throughout this time was recovering from a bout of the virus), the Governor’s Office of Homeland Security and Emergency Preparedness and the Louisiana Assistive Technology Access Network coordinated to resolve the issue, The latter is a federal-mandated agency that provides assistive equipment to people with disabilities, including loaners.
Together, they had the authority at this time to loan Deshae a vent, but now they had to find one. Enter Trach Mommas of Louisiana, a nonprofit that primarily provides peer support for parents of children with tracheostomies. As part of their mission, they assist individuals affected by disasters, such as the present pandemic. Fortunately, a member’s child had transitioned from the exact model vent Deshae needed, and it was surplus she graciously volunteered to lend.
So, a LATAN staffer last weekend drove hundreds of miles roundtrip to deliver the vent. Deshae’s husband, very experienced with that model, knew how to set it up, and it now guards against potential catastrophe for the immediate future. Having a reliable provider completely supplying her equipment and supply needs still awaits resolution, which increasingly has become problematic with a crunch nationwide on these items.
Human nature such as it is means that the institution of government too often looms as a threat to place unwarranted limitations on individual autonomy, if not actually doing so, and can become a source of abuse to enrichen special interests. At the same time, it provides the ideal instrument to protect societies and individuals from harms not of their own doing, whether threatened from people inside or outside of society or from the vagaries of nature, thereby allowing the better part of human nature to express itself. This story showcases humanity’s best impulses through government.