A personal perspective on home care, flexibility, and common sense
"CFC requires states to provide assistance with Activities of Daily Living (ADL's), Instrumental Activities of Daily Living (IADL's) and health related tasks (like medication administration, tube feeding, and vent care) to assure that people have the services and supports they need to live in the community."
"Although New York State has a Nurse Practice Act (NPA) exemption for its consumer-directed program, it needs to amend the NPA to allow attendants under a more traditional agency model to provide assistance with health related tasks with training and supervision from a nurse." -- Community First Choice In New York.
I first experienced the weirdness of this kind of well-meaning but blinkered medical rule when I started using a ventilator at night in the late 1980s, at the same time I started college, exactly the same time.
When I first got my tracheostomy and ventilator in August, 1985, I was in the hospital of course, since trachs require surgery. For as long as I was there, at that hospital, at that time, I had to be in the Intensive Care Unit. Not because I needed that level of care … within days of starting to use the ventilator I was back to almost normal health … but because non-ICU nurses weren’t “qualified” to even touch a ventilator. So, there was the odd spectacle of me attending my first week of college classes by leaving ICU in the morning, going to classes, and coming back to the ICU at night.
That lasted a week, and might have lasted a lot longer, but luckily I was able to move instead into the college infirmary. The college's medical director ran the facility, and had the authority to look at my situations and needs, and agree that I could handle my own ventilator, with help from the infirmary staff, if needed.
This was still not quite “independent living”, but it was pretty close. I stayed there for a full semester, still going to classes. Actually, it was a great way for me to learn all about the ventilator and tracheostomy care, in a partially medicalized setting where there was competent backup. Mind you, it wasn’t “qualified” like the ICU staff, but they were clever enough to assist me in operating the ventilator, should I occasionally need assistance.
Next semester, I moved into a regular dorm room. There were other students throughout the building, but essentially I was living alone, with my ventilator which I used every night. I didn't have any daily assistance of any kind, nursing or otherwise. I had support of the ventilator company, which made Respiratory Therapist visits every month or so, and supplied me with replacement components, taught me how to clean what needed cleaning, etc. It all worked fine.
In my Sophomore year, I moved into the fraternity house I had joined, and as far as I know, nobody had a coronary or gave a stern lecture about how irregular and unhealthy it all was. This was only a year after the majority of hospital staff had been deemed unqualified to so much as turn the ventilator on. Yet, I lived in that fraternity house until I graduated. Granted, the house had a reputation for being the opposite of the Delta House of “Animal House”, but still. The contradiction was not lost on me.
The key was that I had the physical ability to operate the machine. If I had needed someone else to do so at my direction, I don’t know what would have happened. Given the setting, it would have been an obvious thought to hire a fellow student to help, but would that have been allowed? And if not, why not? If I had the mental ability to take care of my own ventilator, why wouldn’t I have the mental ability direct someone else to do it for me?
As it was, it all might have collapsed anyway if not for key decision-makers being flexible and willing to think "outside the box." Should they have stood fast? Did bending, then changing the rules rob nurses of their proper purview? Did allowing a rank amateur (me) to take care of myself ruin my health? Would I be healthier now if I had a nurse visiting me every day, twice a day, to hand me a breathing tube and push the on button on my ventilator? Such nurses would be paid, of course, but would it be a good use of their time and training?
It took flexibility and a willingness to go with common sense, not the jealous guarding of professional turf or terror of liability, that enabled me to live a fully integrated life ... the kind of life ADAPT is fighting for now.