Advocacy = Action

Joan Marie Granato, President, Future Focus, Inc.

In loving memory of Archangel Benedetto

Take action and make things happen!

Advocacy has so many variables when it comes to the Adult Day Care Industry. For  each facility or individual, Advocacy can invoke different meanings. 

The well-being of vulnerable elders impacts the whole family—and our whole society. NADSA board member Joan Maria Granato shares a powerful message of the vital role of advocacy. ____________________

What is advocacy really? The definition: in the 15th Century, "advocacy" was identified as "the act of pleading or arguing for something, a cause, an idea, and a purpose; the act or process of advocacy or supporting a proposal." The word "advocacy" comes from the Latin term advocare and literally means "to call out for support." Today it is used to describe a particular democratic process, where different individuals or groups of people take different actions to try to influence those that make decisions that affect our lives. Advocacy is also about standing up for an issue or cause you believe in and trying to change people's lives to build a better world.

Who are the advocates in our industry? Families, caregivers, physicians, the personal care assistant that takes care of our clients at home, the case manager, the Department of Health, the surveyors, the facility as an entity, the facility staff as individuals or as an interdisciplinary team, the neighborhood, the fire marshal, the politicians, governmental leaders, and so on. They represent so many faces, positions and the core outline of our societal structure. There is no discrimination amongst advocates. There are no boundaries as to who can be our advocates. Advocacy knows no language, culture, economic status or sexual orientation.

Advocacy is only seen through the eyes of the beholder. 

If you believe in something worth fighting for, then advocacy takes action. Advocacy can't occur without action. Many of us may have a thought...an idea…even want to speak out. We wish we could make a difference, but we don't unless there is ACTION. I have found that action is the key to everything, including advocacy. If you want something changed, then you need to take action. You need to do something about it. You need to take a position, make a proposal or argument about your beliefs and there starts the course of action.

I started out in this industry when I was 12 years old, visiting my grandmother Archangel Benedetto in a nursing home in Jersey City, New Jersey. She had ten children (eight boys and two girls) and 45 grandchildren. They were told at that time that she needed to be in a nursing home because she had diabetes. This was nearly 32 years ago. There wasn't Adult Day Care for her, so the family had no other choice. I watched her as she lived—and then, as she slowly died.

We went to visit her every day after dinner. I didn’t mind, I loved her and wished she could be at home again being the grandmother, the family pillar. Fond memories of her making Sunday dinner still cloud my mind. Of course, we started with hot antipasto, then spaghetti and meatballs to feed an army, and salad after we ate dinner. We couldn't pass up the homemade cannolis for dessert. The women of the family helped cook, serve and clean and the men played pinochle at the table while sipping sambuca in their espresso. I also remember extremely large lifelike statues of St. Peter, the Blessed Mother and Jesus in the alcove in the living room. Yes, growing up in a big Italian family was a beautiful experience. I was 12 and that's when it all fell apart. My world as I knew it changed drastically. My grandmother was put in a nursing home and the entire family separated. The Sunday gatherings were no more, the aromas of my grandmother’s cooking became a faint memory, the statues were donated to a church…the family as it was diminished.

My grandmother was 78 when she died in that nursing home. She lost her legs, her home, her life and her dignity there…my father lost the most important women in the world to him and felt helpless the few years she spent there. We lost our family.

As I grew up in the healthcare world working in nursing homes, assisted living facilities and group homes, I realized how important our Adult Day Care component is...not just for the clients that we serve, but for the entire family structure and for those 12-year-olds who could still benefit from their grandmother being home.

Sure, I still got to see my grandmother, but it was not the same. What I saw more of was my father crying silent tears. He felt helpless, hopeless…each time we went there my mother and father were advocating for my grandmother. Why is she wet, why doesn't she have water, why is her meal cold, why is she draped in a small white towel and wheeled to the shower without dignity, why is her curtain open while you are changing her...it seemed as though we had endless gripes and we weren't being heard. My grandmother and many others weren't being taken care of the right way. She was at the end of her life in pain, but never complained, out of fear. She had unexplained bruises on her back, arms and legs; she cried and begged her boys not to say anything to the nurses aides that brutally took care of her. I am happy to say nursing homes and the entire healthcare system have come along way since then…ADVOCACY took ACTION and the system was changed for the better.

The courage to speak out.

After college I got my first job in a small nursing home. I was young but thought I could conquer the world. I loved my work and have so many great memories, but there were some that still tug at my heart. As a young girl ripe out of college, I didn't have a voice. I wasn't being heard, and although I tried to advocate, no one would take me seriously.  I was still wet behind the ears for these folks who ran the system, who surely knew best…or did they?

I share with you these memories because it is so important to understand that every action you take can make a difference, even if you are a little voice. Eventually it will be heard.

Sadly, I was in the era when they used restraints on patients. I used to get in trouble because I would untie a patient so that they could drink some water. Especially those with Alzheimer's or dementia, they would tie their legs, arms and stomach down in the bed. The patients would scream and cry. They used to beg me to release them. As a young girl and a new professional, I didn't have a voice. But I knew that something wasn't right: it was wrong to tie these people up like that. It tugged at my heart. I remember going to the Director of Nursing and the Administrator and questioning this procedure. They assured me that this is what was best for the residents and that all nursing homes do this. I understood that it was a common health care practice, but it still tugged at my heart. It wasn't right, but who I am, I would say to myself…I don’t know much, I am just learning…still the tug was there…so I continued to advocate. I got the facility to release these clients so that they could participate in activities and also during meals, but at night as they lay in their beds, they were imprisoned.

I also got my tires slashed and my life threatened because one day as I was doing my rounds, I saw housekeeping staff tormenting an older Jewish patient who could not speak. He would just sit in his geri chair and lay there. The family was very involved and tried to help take good care of him. He would follow you around the room with his eyes…his eyes said so much. Well, as I passed his room, there they were, three of them, throwing his yarmulka back and forth around him and pushing him in the chair to catch it. It was an image I will never forget. His eyes told the story of his torment. He couldn't speak, he couldn't move, he couldn't ask for help. After I stopped the action, I immediately went to the Administrator to advocate for this patient who couldn't advocate for himself. The workers were sent home for the day and nothing else occurred…except I received death threats and slashed tires. Looking back now, I was fearless…I didn't care what they wanted to do to me, all I cared about was that they wouldn't hurt these patients in any way. We used to have a monthly staff meeting, and I had the opportunity to speak out to those workers that not only terrorized me, but also the patients. After that meeting, I grew up quickly in the industry and learned that advocacy does work...and we must speak out for what is right, for what we believe in and for those who can't advocate for themselves. Those men were fired for other incidents that were reported to Administration after my advocacy speech. That day I learned what respect was. That day changed my life.

Advocacy starts with you.

Our industry is young and still growing. I believe it is a crucial component of the Continuum of Care and real “Aging in Place.”  I don't understand why everyone can't see what I see, what you see…it all makes sense! Clients get to stay at home longer, with their families, while receiving supportive services to maintain or enhance their medical, social and quality of life status. So simple…saves so much money at the State and Federal levels…why is this so difficult to understand? I will let you in on the secret: it is not about what makes sense, what saves money, what may actually be the right choice for our seniors. It is all about ADVOCACY. That's right: the bigger healthcare industries have strong advocacy. They fight…they speak out…they make proposals come true…they are powerful leaders in our arena and most definitely have their place in society. I am thankful for their position and the services they offer—but it is not for everyone. And we need to be a more prevalent choice for our seniors while they still can utilize our services.

Advocate…take action and things will change. Fight for what you believe in and you will be securing our future and the future choices of the clients we serve. Don't be afraid to make changes, to propose new ideas, to speak for those who don't have a voice. Don’t be afraid to take a chance or to reach out!

Be an advocate for our wonderful mission: providing alternative solutions in health care. 

NADSA is a big voice ADVOCATING for the Adult Day Care Industry. Help us help you to help others…be a part of the ACTION….be an ADVOCATE!

For more ways to help advocate go to www.nadsa.org.