Sunday, March 23, 2014

A Cold War Heats Up

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Jordan Carleo-Evangelist, Albany Times-Union - March 23, 2014

This Times-Union article does a very good job of explaining the fairly technical, obscure, but extremely important reason why 14 disability activists are camped out this weekend at the offices of the New York State Nurses Association:
"The group took over the union's lobby Wednesday to protest NYSNA's opposition to an amendment to the Nurse Practice Act that would allow a new category of workers, advanced home health aides, to perform some jobs currently restricted to nurses.
Expanding responsibility for those jobs — like administering medicine and assisting clients with ventilators — would make it easier for those in need of those services to continue to live in their homes rather than being prematurely forced into skilled nursing facilities, the occupiers argue.”
There’s also this ...

The nurses are protecting their own profession. If less-trained, lower-paid aides start being allowed to do medical-ish tasks, it threatens the job market for nurses. It’s the same with doctors and nurses. Nurses often argue, with good reason, that a lot of things doctors do for a higher price can be done just as well by Nurse Practitioners, for comparatively less. But doctors tend to resist that, in part because they are protecting their own market. Some nurses may actually believe that only they can help disabled people take pills and operate ventilators safely, but I suspect what they really care about is the prospect of a “race to the bottom”, with all kinds of medical institutions relying more on lower-skilled people they can pay lower wages. That is definitely not an irrational concern.

As for disabled people who need daily assistance, it’s not that they hate nurses, or want them to have fewer jobs and lower pay. Most really smart home care users understand that all sorts of home care providers should probably be better paid overall. The problem is that the more of our daily care has to be done by top-level professionals, the less likely we are to get that care in a way that enables us to live freely and independently.

Then there is this.

I use a ventilator at night. No rules or regulations prevent me from living alone and operating the ventilator for myself, even though I’m not a nurse. I’m just me, and years ago a Respiratory Therapist showed me how to run the machine I rent from his company. He visits me once a quarter to make sure everything is working okay, but other than that, I’m on my own.

The key difference is that I am physically able to operate the machine myself. At issue here are people who are just as smart as me, but can not, literally, push the buttons, turn the knobs, and attach and detach the breathing tubes for themselves. Their physical disabilities prevent them from operating the machine themselves. They need someone to be their arms and hands … under their direction. The same goes for medications. I can take my own meds. If I couldn’t physically open the bottles, pour a glass of water, and pop the pills in my mouth, I’d need someone to do these things for me. But, I would be responsible for which pills to take when, not the person fetching my water.

The nurses association is saying that in these cases, the people helping us have to be nurses, who are at the higher end of the training and pay scale, not “lower level” home care aides. Part of the rationale for this, I suspect, is the idea that it takes more than simple, direct instruction to handle a ventilator or administer medications. They would perhaps say that it takes general medical knowledge and professional judgment. Nurses are not just servants, doing our bidding. They are managers, who run our care according to the rules and procedures of their profession, and improvising as needed with their professional level of judgement. That's pretty great if you have the flu or pneumonia, or are recovering from surgery, but for everyday routine personal care, turning a machine on and off, or handing you a pill, a nurse is more than you really need.

That is the real difference between the disabled protesters and the nurse’s association. Disabled people just want help to do things they would be doing for themselves, if not for their impairments. Doctors and nurses are geared to delivering and supervising total care for profoundly sick patients. These two things look the same, and include many of the same tasks, but the relationships are very different.

I hope that this protest ends in success. More than that, I hope everyone involved finds a way to defuse what could amount to a zero-sum Cold War between disabled users of home care, and professional nurses. Both have important interests to guard. It would be nice if they found a way to do it without penalizing or scapegoating each other.


This is a good opportunity, also, to once again praise ADAPT's political skills. This all started earlier in the week with angry Tweets and behind the scenes advocacy with New York State Assemblymember Deborah Glick, a liberal Democrat, who to many peoples' surprise, blocked what looked like easy passage of the Nurse Practices Act changes this is all about. Later in the week, ADAPT pivoted its efforts when, I presume, they found that Glick was doing this to support the NYS Nurses Association. In political terns, it looks like Assemblymember Glick chose a very established, known-quantity liberal constituency ... a nurses union ... over a chronically misunderstood, overlooked, and mishandled component of the progressive coalition ... the disability community. I think ADAPT was right to shift it's focus to the nurses. However, I hope Assemblymember Glick and other progressive lawmakers get the message too, that they have a lot to learn about the disability community, and about the implications of our vital interests.

Addendum #2:

Steve Flamisch, WNYT News Channel 13 - March 23, 2014

Another good article on the ADAPT protest. The key quote:
“ … the union has no desire to force anyone into a nursing home or other institution.”
That is a pretty standard spokesperson statement. It is also probably true. Yet, it also suggests a very common type of misunderstanding in the realm of disability rights and disability policy. Policies damaging to the the lives of people with disabilities are almost never intentionally harmful. Few except for extreme medical traditionalists actually want more disabled people in nursing homes. The problem is that policies intended to do one good thing  like ensure higher quality care … often end up also knocking over a different set of dominoes entirely … such as making home care impossible to pay for, thereby forcing people into nursing homes. In this case, as in so many others, it takes disabled people themselves to notice the unintended consequences of policies designed by people who, frankly, only have a rudimentary understanding of our lives.

Weekly Wrap-Up

Disability Thinking Weekly Wrap-Up white bold letters against a sepia toned photo of a row of handicapped parking spaces.
Sunday, March 16, 2014
Monday, March 17, 2014
Tuesday, March 18, 2014
Wednesday, March 19, 2014
Thursday, March 20, 2014
Friday, March 21, 2014
Saturday, March 22, 2014