by Tyra Phipps, Ed.D. (tyra.phipps@gmail.com)
Ms. Patricia McGinnis
Ms. Patricia McGinnis is the Executive Director of California Advocates for Nursing Home Reform. In speaking with A. C. Thompson on the PBS program “Life-And-Death in Assisted Living” she said, “I’m shocked there are not more lawsuits in assisted living. When you have a regulatory system that is not doing its job and when you have people who are filing complaints, you might as well file those complaints down a black hole. That’s what’s going to happen. It’s just a horrible system right now.”
To describe the residents on the floor where I live is just one example. There are nine people and all of them use some assistive device for mobility. Eight people use walkers and I use a power chair. Six of the people are over age ninety. There is one 98-year-old who yodels and or barks to get the attention of a nursing aide. She also spits all the time, except when sleeping. The family members want her to stay out of her room, so she watches television in the common area and also spits up hockers. It is on the floor, side arms of the chair, on her clothing and hands, and a very difficult situation in the dining area where that behavior continues. This particular resident makes a lot more work for any nursing aide and for maintenance that needs to clean upholstery and carpeting. It is a disgusting behavior that sometimes occurs with residents and dementia. However, it is all part of the group dynamic in assisted living.
To explain, groups go through four stages of development. That is form, storm, norm, and perform. The group is constantly changing in these facilities because of attrition, residents moving in and out, so there is a continual formative stage. The next phase of storm is essential. It need not be an outright battle, but there does need to be disagreement or argument in order to move into the normative stage. The norms are really the boundaries for behaviors. Finally the group gets down to business and performs. At this stage, it is hoped the performance will be functional rather than dysfunctional. Ms. Catherine Hawes, A&M University, described the assisted living units she researched as dysfunctional with many patients in early forms of dementia in short-term memory loss, confusion, and inability to make decisions.
Approximately 2/3 of the population in assisted living nationwide is suffering from some form of dementia. The fact is people are living much longer and the baby boomer generation presents a unique set of problems. There is no paradigm in assisted living to accommodate my situation. I have problems with physical limitations as in mobility and also hand coordination or fine motor movement. I do need assistance with activities of daily living such as dressing, preparing the sonicare toothbrush, and feeding two meals. I also need help with transferring in the bathroom area, showering, and transitioning to a lift chair for sleep at night.
At each stage of the game, I am guessing most people will just give up because they do not get any sort of support, compassion, collaboration, corroboration, but rather patronizing or condescending attitudes and then some dismissive paragraph whitewashing everything. While it may be easy to dismiss a complaint, because it does not fit some line in the Maryland Code of Regulations, I am not going away. Assistance should be on my terms. I know best what help I need. This is the reason for writing this entry.
Not everyone has dementia, but that is a common problem with residents in assisted living, skilled nursing, and of course Alzheimer’s units. I am concerned about assisted-living for the sake of anyone coming through the system that needs help. Assisted living units command a high price of $5000 a month and up depending on what the market bears. Paying for help in your own home for as long as possible is recommended. When it comes time to make a transition to assisted living, please be sure that your needs or the needs of your loved ones are addressed appropriately. For example, I resented the way a delegating nurse spoke to my attendant as if I am not in the room. I once worked with a blind professor, Dr. Walter Lackey who told me in a conversation that he really hated going out to eat with his wife. He explained that invariably, the server would ask his wife what does "HE" want to eat. It is so dismissive and annoying to be in the room and be treated like a part of the woodwork.
Ms. Dale Kromroy, whose background is gerontology counseling, stated that even if you have a valid complaint or concern, there may not be any violations of state regulations. A nurse surveyor or inspector from the state may look for how an assisted living unit is not in compliance with the regulations, but that is hardly the issue. I believe policies are written because people misbehave and someone has to try to save them from themselves. It is called in one word, stupid. I believe it is time for the paradigm to shift and look for ways to accommodate the disabled population. Many people of the baby boomer generation remained single and childless by choice. There are also many veterans without limbs or disabled, but competent. Even having a family is no guarantee that assistance can be provided for a disabled member of the group. What can be done?
It does appear that the system wears down residents of assisted living and good people working in healthcare who are trying to do the best job possible. It may be a nursing aide getting paid minimum wage or just above it who repeatedly asks, “What can I do to help?” There may be a manager who says with a look of concern on her face, “I try to do the best I can.” It might be a delegate trying to hasten the complaint process for a constituent. Maybe it is the system that needs to deconstruct in order to reconstruct, but it has to begin with a formal complaint.
Questions for Consideration:
1. What is a formal complaint process in your state? Can it be filed online? Can it be filed anonymously?
2. Who are the investigators and what are their titles? Nurse surveyor is the name of the investigating person for a complaint in assisted living in Maryland. What are the qualifications of this person? Is this person credible as a communicator? Does he or she possess a degree in healthcare administration? What is the education and training level of this person? Information flow that is linear or one way hardly produces a good investigation outcome. Be sure anyone investigating the complaint listens rather than talks.
3. Is it better to use an attorney for filing a formal complaint? In the case of my own investigation, the nurse surveyor said that many times there needs to be numerous complaints. While I was shocked at her description of numerous complaints, I was not surprised. It takes family members, the legal system, a resident and more to get changes. Change comes very slowly and that is unfortunate, so it may be wise to hasten the process by utilizing the legal representative.
4. What is the appeal process? Pay attention to the nonverbal cues of an investigator from the state or an interviewer who crosses legs in a direction away from the interviewee can indicate that the surveyor is not the least bit interested in the complaint, but just needs to get the investigation done. Lack of eye contact and hurrying through the process likely means there will need to be an appeal for continuation of the complaint process beyond the state level.
5. Learn about the education levels of the people involved in the complaint process. In Maryland, a manager of assisted living need only possess a high school diploma! A nurse surveyor
assigned to the complaint process is a registered nurse. A registered nurse may substitute two years experience for the baccalaureate and be qualified for a nurse surveyor position in Maryland. This means that a nurse surveyor may not have earned
a baccalaureate, yet be assigned to investigate complicated complaints and render decisions that are life altering for any resident.
January, 2014