#LivingNotJustExisting
Hanging out at the lake with a friend who happens to be an elder from church.
Alex pulling Aaron…brothers having fun.
There is a difference between funding what keeps someone alive and funding what allows someone to live.
For people with significant disabilities and complex medical needs, that difference can be enormous.
My son Alex uses a diaphragm pacer as his primary respiratory support, with a ventilator providing additional support. His respiratory system also requires continuous humidification.
Even though the diaphragm pacer is Alex’s primary life support, the supplies necessary to operate it are not covered by insurance, Medicaid or any other system.
We pay for the batteries, wires, specialized skin dressings and other necessary supplies ourselves.
That need is constant. It does not change depending on whether Alex is in his bedroom, elsewhere in our home, outside or in the community. Wherever Alex is, his diaphragm pacer must function. If it does not, his primary respiratory support does not occur.
His humidification creates a separate but related challenge.
The typical solution for taking someone who uses a ventilator into the community can be fairly simple: place a heat-and-moisture exchange filter in the breathing circuit—the tubing—instead of using the humidifier.
Alex has tried that.
It does not work for him.
His secretions became extremely dry, and he developed severe airway plugging. His body made it unmistakably clear that the standard solution was not a safe solution for him.
So when Alex moves around the house, sits outside or leaves home, his respiratory needs do not magically become standard.
His humidification has to travel with him.
Making that possible requires batteries, specialized supplies, respiratory equipment and backup capacity. Most of the resources necessary to keep his humidification functioning while he is mobile are also not covered.
We pay those expenses too.
The distinction matters:
The uncovered diaphragm-pacer supplies are necessary for Alex’s primary respiratory support wherever he is.
The separately uncovered mobile-humidification resources are necessary for him to move safely through his home and participate in the community.
Neither need disappears simply because the expense is not covered or reimbursed. The cost simply moves to the family.
Here is what I think policymakers need to understand:
The need did not disappear because Medicaid did not pay for it.
And this is not really a home-versus-facility question.
Whether someone lives in a family home, their own home, a group setting or a facility, community living should mean more than being kept alive inside the building—or the room—where the equipment works.
A person should be able to leave the bedroom.
Move through the house.
Sit outside.
Go for a drive.
Attend church.
Visit family.
Go to school.
Attend a ballgame.
Participate in ordinary life.
For someone with complex disabilities, doing those ordinary things can require very extraordinary resources.
That is one of my concerns as Ohio talks about “modernizing” its developmental-disability waiver system.
What exactly are we modernizing toward?
If standardization becomes better at calculating the resources necessary to maintain a person, but worse at recognizing the unusual resources necessary for that person to participate in life, I am not sure we should call that modernization.
Rare needs do not become unnecessary because they fall outside the standard model.
An uncovered resource does not become unnecessary simply because a family has been paying for it.
Sometimes the very things that look unusual on a spreadsheet are the things that make an ordinary life possible.
A system should not measure only what it takes to keep someone alive.
It should understand what it takes for that person to live.
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