I am acting as a volunteer part-time nursing case manager for a friend of mine coping with the progressively-complex demands of dealing with a chronically-ill parent. Its more than just being a supportive and experienced sounding board, I’ve been on the phone calling-in chips around the City to get things done, but my friend continually surprises me with new and creative ways to manifest bureaucratic success utterly without my assistance.
Families coping with extraordinary health care situations, either by virtue of the illness itself or because the care is happening in a non-traditional setting (such as at home), privately hire caregivers to provide direct care that is unfunded by the health care system. These caregivers are formally known as “family-employed surrogates,” (FES’s) but more often by the more casual “private hires.”
They are directly-employed domestic workers. Some traditional barriers to employment are absent. One doesn’t necessarily need to speak English or possess any trade certification or education. One simply needs someone willing to hire them. The rest is negotiable.
Because of this, family-employed surrogates are often newly-arrived immigrants without a strong connection to an existing social network, much less to a country administered by an administration that harbors such ill will for immigrants. But, I digress.
My friend employs more than one such person. My friend’s parent requires a constant bedside companion. There is a specific (non-English) language requirement and the care is moderately technical. To be direct, my friend is lucky to find anyone at all. I know this job market.
My friend’s parent is a resident in a nursing home. Nursing homes are under explicit, novel state-wide visitation rules which place an additional staff-hour burden on these already overwhelmed facilities without the funds to support meeting the new requirements. Thank you Saint Cuomo.
Owing to the nature and stage of the illness, my friend’s parent is granted license to negotiate a care plan that may include minor technical modifications to state guidelines. For example, visitors are permited in the room. Other residents have to go down to common designated visiting areas to receive their visitors. All New York state nursing home residents in my friend’s parent’s condition are granted this license.
In this case, the compromise of the guidelines involved family-employed surrogate caregivers rotating two-week live-in shifts at the nursing home, staying with my friend’s parent as a family member might sit vigil with a gravely ill loved one, staying in the room and sleeping on guest cots provided by the institution. The care plan requires a companion in the room.
So, every two weeks a new companion relieves the old one. The new visitation rules require that family-employed surrogate caregivers get covid tests every seven days, just like the nursing home staff and other visitors. Fair enough, but they don’t leave the room for fourteen days at a time.
Paging Dr. Kafka. Wet bureaucratic clean-up on aisle three.
Predictably, long-term care is not where the best and brightest medical administrative clerks and managers end up in the health care system. My friend should have been notified of the new testing requirements well in advance. That did not happen.
So, my friend had a caregiver who is unable to make sense of their own state ID (owing to language barriers) in need of a rapid turnaround covid test. That is, this caregiver had the same covid testing requirements as Lebron James, but not the resources.
New York City is fortunate enough to have these rapid-turnaround PCR tests available to the public. It’s just kind of a secret (not really, just hard to find), and requires complex interaction with electronic gate-keeping and on-line results reporting services. Imagine you are here negotiating that with only your native Malaysian language skills to rely upon. None of this is translated into Malay.
You have an ID, that’s your picture on it all right, but none of the other symbols on. this piece of plastic mean anything to you. How well do you think it is going to work for you to take your “activation code,” go home, create a new account on the newly-online Epic (trade name) electronic medical record system that the City hospital system uses and find the right page for your results, and all within 24 hours?
Yeah, right. That’s going to work.
But, that’s not all. No no. I wouldn’t be bothering to tell you this story if that was all.
This caregiver had interacted with the City hospital system before, they located their identity already in the system by matching up their state ID. The assigned the test results to be reported accordingly and issued instructions to retrieve the results within the promised 24 hours.
The zip code in the system did not match the zip code on the state ID. No one noticed until my friend got home to log-on to the systems and help the caregiver retreive their results.
Guess what? If you don’t know your matching zip code you can’t get your results.
Guess what else? You get three tries to submit the correct zip code before your activation code expires. They were doing this three hours before the caregiver shift change because the nursing had not bothered to notify with enough notice to do this any sooner.
Dr. Kafka. Stat call, code blue, meta-bureaucractic explosion on aisles two through ten.
To shorten the story, a friend with HIPAA-ninja skills and access to the underlying information logged on and discovered the magic series of digits that had to be entered to unlock the magic kingdom of covid test results.
This was done, of course, and…wait for it…no reults were posted. They’re behind, this is free outpatient care after all, how could you be so unreasonable to expect we would keep our promises? Gol!
The results had to be emailed after a phone call (to a non-Malay-speaking service, by the way).
Vote. I did. Today. Do it now if you can.