I spent this past year working with kiddos who needed some extra help breathing 🌬. Trachs & vents are incredible interventions for those who want them, and also have hidden medical costs at 🏠.

[Thread on one hidden medical cost for #pulm families, and how to try and help] /1

During my time with families, I learned about the increase in electricity bills when they get discharged. 💡

Families reported monthly power bills ⬆️ by $400-500 once they got home. This might be after a week, 3 months, or 2 years of living in the hospital. /2

Few people think about their electricity bill as a medical expense, but if you use a ventilator, it is.

It became clear that I needed to investigate 🕵🏻‍♂️ how this bill was wracking up, and how to better prepare families for what was ahead when getting ready for 🏠. /3

This 🕵🏻‍♂️ involved conversations w/: parents, nursing, home care, social work, care coordination, respiratory therapists, medical supply companies, & power companies.

Turns out none of the individual (very powerful) vents create the bill surge – it’s everything combined. 😬/4

The Trilogy costs less than $1 💸 /day to run, but everything new plugged in demanding power combined - the oximiter, cough assist, feeding pump, suction, etc. drives the bills way ⬆️.

This increased electric bill is ongoing, unexpected, and can absolutely level ppl. /5

From a policy standpoint, there is no law in the state of WA requiring electric companies to keep the power on just because power is required for life sustaining support. 😳📜🚫

There is also no standard process for how, or when the 💡s will be shut off if bills go unpaid. /6

This process is loosely dependent on pay history 💰💰💰 - if there was previously a “good” payment history, companies will wait “a lot longer” to shut it off.

This could be months 📆, or is could be sooner, and is fraught with bias. /7

There are few assistance programs.

They require you be 125%-150% below the poverty line/power already shut off. 📞: Low Income Home Energy Assistance Program (LIHEAP), Emergency Low Income Assistance (ELIA), Project SHARE, PSE HELP (Puget Sound Energy Home Energy Lifeline). /8

A preemptive & protective community measure families can take is a lift support seal from the power company. 🗜

🔊This must be requested! This special seal put on the meter signals to place a 48hr notice📋 allowing for payment/communication instead of simply cutting the power./9

My recs for any hospital or individual working w/ those requiring home ventilation:

1. Implement an “electricity discharge checklist” for a subset of care coordination or social work teams to discuss current status of power bill at 🏠, electricity needs, assistance programs, /10

and future bills anticipated. These checklists should be available for review for any service.

2. Provide all families with a financial assistance program fact sheet 📄 for families utilizing a ventilator to eliminate information outreach bias. 🚫/11

3. Create phrasing around how to have these conversations with families so that care team members feel equipped (and more comfortable) to have them. /12

Regardless of the increase in a family’s electricity bill – whether it be $3, $300, or $3,000, it’s a cost increase that families need to be informed about and feel prepared to manage. 👍

It’s our job as a part of a family’s team to know about this, to provide education, /13

and resources to work towards eliminating barriers to care on all fronts – medical, financial, and otherwise.

If you work with folks utilizing vents, I ask that you especially consider the above. Numbers don’t lie, and we shouldn’t unknowingly at discharge, either. #medtwitter