Not For Amateurs Part Last

September, 2020

You have been so good to me and tolerating my rants abour the need for ALS case managers that I’ll only ask one more indulgence. At least not until some new transgression sets me off. At the risk of discussing issues I know little about (I know that never stopped me before) let me describe the attributes of Super ALS Case Manager Person.

Super needs to be employed in an interdisciplinary ALS clinic with an active fundraising group that knows how to raise funds for operations. Admittedly this will be a very tall order. Alternatively, we can hope that insurance companies would view Super as a powerful risk mitigater and treat Super as a reimbursable expense. I know, go back to fundraising.

Assuming the fundraising nut can be cracked, the Super must be someone who can provide a solution for overwhelmed pALS trying to navigate care of a multifaceted disease through an increasingly siloed medical industrial complex. The Super must have the domain experience to act as the general contractor a pALS can use to build a life with ALS.

Super must be an active member of the pALS ALS journey rather than a mere resource. At the initial stages of the disease pALS are overwhelmed with everything from financial planning to home remodeling. At the same time they don’t have the time or capacity to get everything done. The Super would not merely provide a list of qualified contractors that modify showers to prevent falls, but would facilitate initial meetings and provide other guidance.

A large part of the Super’s function is to leverage and coordinate the efforts of the clinic with those outside the clinic. I saw this coordination first hand when I expeditiously received a loaner wheelchair while waiting for my permanent LazyBoy on Wheels to arrive. See https://embrace-the-suck.blog/2020/09/18/lazyboy-on-wheels/
I daresay that my neurologist and occupational therapist would have preferred a Super deal with the insurance company rather than having to waste their billable time dealing with it themselves.

The above shows where coordination with a group outside the clinic easily provided me with a loaner chair and where a Super could have been used to save professional time. My instincts are that there is a business opportunity here which I will leave to smarter people to figure out. In the meantime, I will spare you further rants on this issue until the next time something sets me off.