Excerpt from an email I sent…

As family providers continued to be scrutinized and analyzed, understand that for decades since home and community services began, often it’s been a family member (often unpaid) who has been the glue that’s held things together and kept their loved one stable, well, and to live not just exist!

An excerpt from an email I sent…

### Emergency planning and remaining at home

Alex has repeatedly been discussed in terms of facility placement if I become temporarily or suddenly unavailable.

I need to be clear that Alex’s emergency plan is to remain in his home, with appropriate support brought to him.

His home environment is not incidental to his stability.

It contains the equipment, respiratory setup, established routines and knowledgeable support that have helped maintain his stability for more than two decades.

His daily standing, exercise, stretching, positioning, movement, airway management, personal care, interaction with others and established routines are not simply amenities. They are components of the life and stability that have been built around his individual needs.

During the past year, I personally investigated the facility alternatives that had been raised. I contacted Heinzerling, an ICF, and The Landings, a skilled nursing facility.

Although these facilities may care for individuals using ventilators, the people I spoke with at both facilities were unfamiliar with diaphragm pacing. Heinzerling indicated that Alex would not fit its setting.

That illustrates an important distinction:

A facility’s ability to “take vents” does not establish its ability to safely manage Alex.

Alex’s diaphragm pacer is his primary respiratory support. His ventilator provides additional support. These systems cannot simply be treated as interchangeable.

Familiarity with conventional mechanical ventilation does not establish competency with Alex’s respiratory system, autonomic instability or broader medical complexity.

Yet facility placement has continued to be raised without, to my knowledge, anyone demonstrating that such a setting has been evaluated and found capable of safely meeting his needs.