I am the Resident: Becoming the Advocate Your Loved One Needs!

By Cheryl Wilson

Having a loved one in a long-term care community (commonly called "nursing home") is difficult in the best of circumstances, but what happens when you have a problem with the care your loved one is receiving? Who can you turn to when you have questions? Have you ever been told:

No, we can't give your mom three baths a week; we are only required to give two baths a week. Or,

If you don't like the care your dad is getting, why don't you move him? Or,

What about getting a letter that says, "We can no longer meet your mom's needs; you have 30-days to find a new community for her.

If you, we're told any of the statements above, what was said was most likely a community's policy, not a regulation or law. Your loved ones' good news is that a community policy can NEVER violate a Residents' legal Rights!

Many families cannot find or afford an advocate to guide them in understanding what their loved one's rights are. Now, you can become your loved one's best advocate! This book contains a clear explanation of a long-term care resident's legal rights, including 65 real-life examples of advocacy in action.

This book can empower residents, families, students, and professionals. Knowledge is power. When you know and understand residents' rights, you can become a powerful advocate for your loved one, resulting in improved quality of life.

"The Secret to honoring a resident's rights is to give each resident as much control of their daily life as they can manage!"

• Language: English
• Publisher: BookBaby
• Release date: Mar 1, 2021
• ISBN: 9781735809229

Book preview

INTRODUCTION

I have been involved in long-term care since I was in college, first, as a Certified Nurse’s Aide (CNA), then as a Certified Medical Technician (CMT). I loved working in the long-term care communities; however, the problem I constantly faced was with fellow staff members who would frequently call in sick and leave the dedicated staff members to do twice the work. After several years, I decided I had had enough; I vowed to come back and help the residents when I could make a difference.

After college, I went to work in a home health agency. While I was there, I worked in medical records where I learned to transcribe medical records as well as how to audit client’s charts. During this time, I learned about the common medical problem’s seniors experienced as well as what medications were most commonly prescribed to seniors.

Ultimately, I was approached by an acquaintance who asked me if I would be interested in changing jobs. At the time I was not looking to switch jobs. I told this individual that I was happy working at the home health company and had no thoughts of switching jobs anytime soon. She told me that she knew of a position that would be opening and she felt I would be perfect for that position. At that point, she had captured my curiosity, so I told her to tell me about the position. That is when she told me about the Long-Term Care Ombudsman Program. As she told me about the Ombudsman Program, I immediately knew that this was how I could fulfill the vow that I made to myself; I was ready to return and make a difference in the lives of residents in long-term care communities.

The Ombudsman Program is a federally mandated program which advocates for residents in long-term care facilities. The more I learned about this program the more I knew this is what I had been looking for: a place where I could make a difference. In May 1996, I started with St. Louis Long Term Care Ombudsman Program as Coordinator of Volunteers. As the Coordinator of Volunteers, I was responsible for hiring, training, and supervising all the Ombudsman Volunteers. I became the director of a program that provided victim services to residents abused in long-term care communities. The name of this program was SERVE (Serving Elderly long-term care Residents who are Victims of crimE). To be successful in these positions I had to learn all the State and Federal Laws that governed long-term care communities. To do this I read every State and Federal law and regulation once a week. As I did this, I began to learn and understand these laws and regulations. As my position with the Ombudsman changed over time, I ultimately became the Lead Advocate and the Director of the Ombudsman Services for the St. Louis Ombudsman Program.

While working in the Ombudsman program, I made the decision to get my master’s degree in Gerontology. While working on my master’s degree I focused on long-term care and caring for individuals with Alzheimer’s and other forms of dementia. At this time dementia care was just starting to take off in long-term care communities. I had the opportunity to do my practicum study with the St. Louis Alzheimer’s Association where I came into direct contact with families struggling with caring for loved ones with dementia. During my time with the Alzheimer’s Association, I saw a need for individuals who specialized in advocating for residents with dementia.

While the Ombudsman always seeks to resolve complaints to the satisfaction of the resident, I quickly learned that sometimes what the resident sees as a resolution to their problem is not the same resolution that is being sought by the staff, families or even sometimes the Ombudsman. I had to learn to listen to what the resident wanted and not push my thoughts or opinions on them; I had to help them convey their concerns to the staff or sometimes family members.

Over time, I noticed that most of the time when a resident had a complaint, it was due to a basic resident right not being honored. I decided to focus on learning everything I could about Resident Rights. It is important to note that when a resident has a complaint you cannot assume the staff have done something wrong. The first thing I always do is interview the resident, find out what the concern is, then I look for any regulations that are applicable. Once that is done, I interview staff to see what their perspective is, and what they have done to address the concern. The staff would often ask why I focused all my decisions on what the resident wanted, and I would tell them that at the end of each day, staff members get to go home, I got to go home, but for the residents - this is their home. In your own home, you should be able to live the way you choose.

Over the years I have seen many things, but one thing I know needs to happen is that family members need to have access to the regulations and understand resident rights before problems arise.

The greatest tool I can pass on to you, the family of a resident, is the knowledge that a family who knows and understands resident rights has a greater advantage when it comes to getting good care for their loved one. Often, I would talk with families who were told things that simply were not true. Once a family member knows and understands a resident’s rights, they do not need an advocate speaking for them, they can handle the situation on their own. It is also important for families to realize that they are not alone. There are all kinds of community support groups that are willing to help families through the difficult times.

Families can be great advocates for their loved ones - they just need to know what the regulations are. This book is going to give you the Federal Regulations in a simple to understand format so any family member can become an advocate for their loved one. By doing this you can ensure quality care for your loved one. Any community that receives federal money (Medicare/Medicaid) must follow both the state and federal laws as they pertain to resident rights. Assisted Living Communities and Residential Care Communities do not have to follow Federal Regulations and Laws because they do not receive Federal funds. Each individual state has its own laws and regulations which govern long term care, and which can be invaluable to know when you have a loved one in an Assisted Living or Residential Care Community.

It is important to note that when rights are not being honored it can be due to many things. Sometimes it is because the staff are not aware of what a resident’s rights are; other times it can be a result of poor training; and yes, sometimes is simply because a staff person does not care.

The reason for writing the book is to empower all residents, families, students, and professionals. Knowledge is power. When you know and understand resident’s rights, you can become a powerful advocate for them and improve their quality of life.

"The Secret to honoring a resident’s rights is to give each individual as much control of their daily life as they can manage!

Chapter 1 - The Changing Population of Long-Term Care

When people think of the types of people living in long-term care communities (nursing homes) who comes to mind? For most people, they picture an elderly man or woman with a visible disability preventing them from living independently in the comfort of their own home. Perhaps this scenario reflected reality a decade ago; it is not the case now. In today’s world, the population of long-term care communities has transformed into a diverse and complex group of residents. In addition to the stereotypical long-term care resident, the following list includes atypical residents one might encounter in these vibrant communities:

Young adults: anyone needing long-term care over 19 years of age can be placed in a long-term care community.

•Individuals with head injuries.

•Accident victims.

•Gunshot victims (victims often require six weeks of IV therapy; many of them are sent to nursing homes to complete their therapy);

•Young adults facing devastating and debilitating illness - examples include multiple sclerosis, muscular dystrophy, Parkinson’s, amyotrophic lateral sclerosis (commonly known as ALS / Lou Gehrig’s disease).

•Developmentally disabled adults who otherwise would not have care.

•Psychiatric Residents: these residents can be young or elderly; their psychiatric problems can range from depression to schizophrenia and anything in-between.

•Residents with chronic substance abuse issues. Not surprisingly, these residents can range from the young or elderly as addiction is an equal opportunity master. Typically, a young resident has experienced significant enough damage resulting from the drug abuse so their ability to function independently is compromised.

•Forensic: Perhaps not commonly understood are the forensic residents. These are the residents who exhibit propensities towards violence or other criminal activity. I will discuss more about a forensic experience I had early in my career as an advocate later in the chapter.

The population of long-term care today is filled with residents with a variety of illnesses, and limitations. In addition, more and more residents in long term care communities have an illness which includes some level of dementia (confusion). In these cases, the resident (young or old) may be physically fine, but mentally are unable to care for themselves independently and at home.

Ultimately, each of these residents have specific needs which require long-term care of some kind. Traditionally long-term care did mean older people who were losing or had lost independence. However, with this greater diversity, more resources are needed in these communities to adequately care for different types of medical issues. Unfortunately, not all long-term living communities have the resources to handle the influx or range of needs.

Consider the following needs:

•Additional and specialized training to handle younger or mentally ill patients.

•The additional needs of dementia care.

•Activities for all residents meeting their individual needs (This is a Federal Law: residents who are young or those with dementia require activities that address their unique needs and cognitive levels).

•Expectations have shifted: today’s consumer is simply different as families are expecting the staff to take on a greater role in providing individualized care for each resident.

Tips for Families Seeking Care

•Tour the community to determine which home will provide the best care for your family member.

•Focus on amenities the community will offer that will benefit your family member specifically.

•Remember dementia residents who are physically well will often require security protocols designed to prevent residents from walking off the premises and getting lost.

Good dementia care will also typically have a structured routine and consistent staff.

However, if your loved one is sharp as a tack but needs physical therapy, it would behoove the family to ask questions pertaining to how residents are encouraged to utilize the therapies and how the therapy is delivered to residents.

While it is often tempting to focus on the aesthetics of a community - the curb appeal - focus instead on the type of care residents receive. There are plenty of communities that lack prettiness but provide outstanding levels of care. The opposite is also true: just because the community is beautiful does not automatically translate to quality care.

I am often asked by families to tell them which communities are the best - by which, they mean, which communities have little to no problems/complaints. My response is always the same: when you are working with people, problems will arise periodically. The question should not be which communities have no problems; instead, focus on communities who address problems. This means they don’t justify, hide, or shift blame when conflict arises; they do a complete investigation and the act on the results of what they find. This is the true sign of a good community.

Transparency is crucial for long-term communities. Communities that are not honest with residents/families are not going to gain the trust of their residents, families, and communities.

Example 1 - Communities who Effectively Problem Solve

I worked with an administrator of a skilled nursing home who would call me and say Cheryl, we really dropped the ball with one of our residents; then he would provide me with the details. This administrator would consistently ask me what they needed to do to rectify the situation and make it right for the resident / family. This stood out to me, because I did not have many administrators who would do this; but I will tell you if I ever had a complaint against his community, I knew that I could call him, and he would either say yes what was reported to you did happen or no that’s not what happened and share the situation from his perspective. Because of his history of always letting me know when they did something that they should not have, I always felt comfortable when he would say that’s not how that situation occurred" that he was being honest with me or at the very least what he was telling me was what he truly believed to be true.

To better explain this type of scenario, consider this example from my first year as an advocate:

Example 2 - An Example of a Patient Placed for Forensic Reasons

I received a call from an administrator at a facility; he all but begged me to come and talk with an elderly man because that elderly man threatened to kill his roommate. I was somewhat confused by this request; I responded by asking why my help was needed because I did not understand the general alarm: people say things when they are upset without necessarily intending to act on them. The administrator proceeded to tell me this man had been sent to them from prison: he was convicted and sentenced for murder...because someone owed him $50 and did not pay.

That elderly man was now in a long-term care community because the prison felt like they could no longer meet his medical needs. Once I understood the gravity of the situation, I met with this resident; we worked out a solution to his problems with the roommate.

Chapter 2 - The Right to Participate in Their Care

Every resident in a long-term care community has a right to participate in their care. With person-centered care becoming the standard level of care in the United