Essential Caregivers Act

Floor Speech

Date: June 29, 2021
Location: Washington, DC

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Ms. TENNEY. Madam Speaker, I rise before you today to share the heartbreaking stories from Americans around the country, including my own district, who were cut off from their loved ones in long-term care facilities during the COVID-19 pandemic.

For the next several months in this Chamber, I will share harrowing testimony submitted to my office from these families.

Essential caregivers were prohibited from entering nursing homes, group homes, and other long-term care facilities to provide an extra level of care and love, which is so desperately needed and deserved by those who call these facilities home.

Over the past year, long-term care facility residents suffered in isolation. Alone, many lost the will to live, and many others deteriorated physically and mentally.

While we cannot go back in time to fix what has been done, we can take steps today to prevent this from ever happening again. If Congress fails to act, we could see thousands more Americans die or suffer in isolation again.

I have introduced the bipartisan Essential Caregivers Act to fight for the rights of our seniors, our constituents living in group homes with disabilities, and anyone who resides in a long-term care facility. This also includes young children with developmental disabilities.

Under Federal law, residents in long-term care facilities have a right to receive visitors at any time. But during the pandemic, this right was curtailed completely. Many residents, including children with disabilities and seniors, were not allowed access to loved ones who had been caring for them prior to the pandemic. This took a tremendous toll on them.

My bipartisan bill addresses this issue by striking a commonsense compromise. It implements a new Federal standard that will end this indignity. This bill permits each facility resident to designate up to two essential caregivers who will be provided safe, reasonable, and transparent access to residents during any future public health emergency.

The Essential Caregivers Act is a compassionate step to ensure the most vulnerable among us never suffer alone again.

Why is this so important?

Because essential caregivers aren't just visitors; they are, as the name implies, caregivers who help with activities of daily living and provide emotional support and companionship.

This care enriches the lives of residents, enhances their well-being, and helps them thrive personally and socially. Without it, residents ultimately suffer. This is exactly what we saw during the 15-month lockdown.

The importance of the essential caregivers in no way diminishes the critical role that facility staff place in residents' lives, which during this pandemic was nothing short of heroic. Essential caregivers simply supplement the care provided by facility staff. They are a force multiplier that enhances the ability of residents to thrive and to live their lives fully.

Importantly, this bill upholds strict safety and health standards to protect residents, staff, and caregivers. Any essential caregiver must comply with whatever health standards are put in place by a facility. This includes requirements for testing, PPE, and social distancing.

In my home State of New York, one of the greatest tragedies of the COVID-19 pandemic was the suffering of those living in nursing and group homes. First, they suffered because of Governor Cuomo's negligent policy to return COVID-positive patients to long-term care facilities. Then they suffered by not being able to access the caregivers they depended on for so many years.

Today I want to tell their stories not only from the constituents I represent in New York, but also from those around the country who similarly suffered.

First, we remember the life of Ana Martinez. Vivian Zayas and Alexa Rivera are the cofounders of Voices for Seniors. Their mother is Ana Martinez, who was supposed to undergo a few weeks of physical therapy in West Islip, New York. But because of Governor Cuomo's COVID mandates, Vivian and Alexa were unable to tell their mother good-bye before she passed away after contracting COVID in the facility.

Vivian and Alexa has since made it their life's mission to see that no one else endures the hardships they experienced being cut off from their own mother.

We remember the life of Daniel Alvino. Tracey Alvino is the daughter of Daniel Alvino. Daniel was a veteran and a football fanatic. His family meant the world to him. His laugh was the highlight of all of their holiday parties.

In March 2020, Daniel was placed into a rehab facility in a New York nursing home after having neck surgery. Under Cuomo's nursing mandate, Tracey had no access to her father for a significant period of time. Daniel fell very ill and had to be rushed to a hospital and placed on a ventilator.

On April 14, 2020, Daniel Alvino passed away at the age of 76. It wasn't until a year later that his family finally held his funeral to commemorate his life that was cut far too short.

This evening, we remember Mr. Alvino.

We also remember the life of John Daly. John Daly was a husband, father of five, grandfather of nine, and a Marine veteran who served on the front lines in Korea. He and his wife, Mary, were together for 63 years until the day he entered the Gurwin Jewish Nursing Home and Rehabilitation Center at the time lockdowns were put in place.

John spent 20 days at the facility after having been hospitalized with pneumonia. Having suffered a minor stroke previously, John had limited use of his left arm and needed assistance.

Madam Speaker, his wife was the one who was normally there to help him in the facility, but she was cut off from him completely. She was no longer able to see John and received only infrequent phone calls.

Once his rehab was over, the family picked him up to find that he was no longer able to walk. His condition had deteriorated significantly. In a matter of days, the family had to choose between hospice or fighting for his life. They chose to fight.

Sadly, because of the isolation he faced, John was not eating enough to live. Sadly, John lost his life on May 24, 2020.

The family feels strongly that if his wife had been by his side, giving him the love and care that he needed, he would be with us today.

This evening, we remember John Daly.

Madam Speaker, we also remember the life of Rosemary Abraham. Karla Abraham-Conley is the daughter of Rosemary Abraham. Rosemary was admitted to a long-term care facility in September 2019.

Before the pandemic, Karla was by her mother's side as a caregiver. She took her to lunch, brought her to family dinners, and provided help with the day-to-day activities.

When March 2020 arrived, Karla was cut off from her mother completely. After months of isolation, speaking only over the phone, Karla noticed the toll that it was having on her mother's health.

Window visits were brutal and confusing for her mother. Karla's mother simply did not understand why Karla wasn't allowed in to see her.

As they spoke over FaceTime, Karla watched her mother deteriorate. Only after Karla pleaded for someone to care for her mother was she eventually sent to the emergency room due to poor health.

Sadly, Rosemary Abraham died 7 days later, on October 4, 2020. She died from isolation, failure to thrive, and neglect.

If Karla had been allowed to be in the facility with her mother, she would likely be alive today.

This evening, we remember Rosemary Abraham and remember that Karla Abraham-Conley was one of the people who inspired us to put together and to draft the Essential Caregivers Act.

Madam Speaker, we also recognize the suffering of Susan Wilson. Robert Wilson is married to Susan Wilson. She is a retired pediatric nurse who suffered a major hemorrhagic stroke that left her paralyzed on the right side. Her speech was limited, as was her ability to perform daily living activities.

She did not get COVID, nor did she die in the long-term care facility, but she has suffered severe damage by the extended lockdown.

For a full 7 months, he was excluded from seeing her. Even though she was in an excellent nursing home, her care and her emotional, physical, and mental state deteriorated significantly.

No staff, no matter how good, can provide only what an essential caregiver can provide. His wife was admitted to the hospital twice. Her speech deteriorated. She lost the ability to use her nondominant hand. She lost progress on relearning how to walk and is now confined to a wheelchair.

In his formal testimony, Robert said: ``I am not a visitor. I am Susan's voice, her only voice. She should never have been subjected to the isolation, and you all have the ability to keep it from happening again.''

This evening, we recognize Susan's suffering. The Essential Caregivers Act would have protected Susan's rights and allowed critical access for John to continue for her care.

Madam Speaker, we also recognize the suffering of Gina Zanchelli. Dolores Zanchelli was the caretaker of her mother, Gina, who lived in a skilled nursing facility in Long Island, New York.

Dolores visited her mother every day to provide the extra care that the facility was not able to deliver each day. Having access to her mother allowed Dolores the chance to monitor her mother's health closely.

Once lockdowns went into effect, Dolores was cut off from her mother, who became depressed from being isolated. Physical therapy stopped, and the necessary care she needed was deemed unessential in the facility.

Delores and her mother were limited to only video calls during the lockdown. After Dolores went through a rigorous process to see her mother, she was able to have three socially distanced visits over the course of 13 months, about 10 to 15 minutes each, but the isolation had already taken its toll.

Gina's rights were violated, and the damage that resulted physically and mentally has been irreversible. In Dolores' words: ``This should never be allowed to happen again.''

This evening, we recognize the suffering of Gina Zanchelli.

Madam Speaker, we also recognize the suffering of Lynn Ray Leljedal. Prior to COVID, Carrie had never been away from her son, Lynn, for more than 9 days. He was 32 when COVID shut down all the long-term care facilities.

Lynn was born with a rare seizure disorder called Sturge-Weber syndrome. At 16 years old, he had to have the right side of his brain disconnected to control seizures.

Lynn moved into a long-term care facility in 2013. His mother, Carrie, has always been a hands-on mom. She never just went to visit; she would spend hours with her son, cleaning his room and eating meals with him and the other residents. Some nights, she would just go over to help him get ready for bed.

In March 2020, Carrie was told that the facility was closed to all visitors. Her heart dropped. For over 4 months, she was only able to see Lynn through a window or through a virtual visit.

When she was finally allowed to see Lynn, it was only at doctor's appointments. The distance took its toll on them.

As Carrie said in her testimony to me: ``There is only one way to ensure that any resident of long-term care never faces this again. This is by passing H.R. 3733, the Essential Caregivers Act.''

Madam Speaker, these are heart-wrenching stories that show exactly why we need to pass the Essential Caregivers Act. Had this law been in place, these residents would not have suffered alone in isolation, and their caregivers would have been there to safely provide the supplemental care that is so critical. Individuals we lost may have been with us today.

This bill is about protecting the rights of the most vulnerable among us.

Madam Speaker, the stories I shared with you this evening only scratch the surface of the suffering individuals and families endured around the country.

Madam Speaker, I have personally received hundreds of pages, and I will show them to you. This is just some of the gut-wrenching testimony from families who have been through excruciating circumstances fighting for their loved ones' rights.

To read it all would take hours, which is why I will post every page of it on my website. Let it be a permanent reminder of the need for this body to pass the act.

Each of these stories, we will try to get them through. We have another year and a half left of the term to try to get them through Special Orders or other ways on the floor so that these people can be properly recognized.

Before I close, I want to share some additional names of people who also submitted their stories, so that their names are in the Record:

Bill Borelle, essential caregiver to his 96-year-old mother.

Tamra Holland, essential caregiver to her mother, Darlene.

Debbie Manderville, essential caregiver for her father, Wallace McTaggart.

Elmer Dengler, essential caregiver to Sara Dengler.

Kim Eastmann, essential caregiver to Eulala Dade.

Ginger Vukas, essential caregiver for Virginia Ross.

Irma Rappaport, essential caregiver to Lillian Felix.

John Barabas, essential caregiver to his wife, Patricia.

Karen Klink, essential caregiver to her mother, Cynthia.

Katie Zaba, essential caregiver to her Uncle Jack.

Laughing Womyn Ashonosheni, essential caregiver to her 86-year-old parents.

Laurette Klier, essential caregiver to her mother-in-law.

Laurie Kruithof, essential caregiver to her mother.

Lucille Powell, essential caregiver to her husband, Jack.

Amy Saunders, essential caregiver to her mother, Gloria Kravetz.

Beth Segessenman, essential caregiver to her mother.

Cindy Goodloe, essential caregiver to her father, Major John Preston Roden.

Denise Holt, essential caregiver to her husband.

Diane McMillen, essential caregiver to her mother, Joanne.

Kathi A. Vanbenschoten, essential caregiver to Karl Landherr.

Emily Main, essential caregiver to her mother, Nancy Proudfit.

Felicia Knary, essential caregiver to her mother, Joyce.

Joyce B., essential caregiver to her mother.

Margaret Melzer, essential caregiver to her mother, Elfried Mach Melzer.

Martha Rhodes, essential caregiver to her 91-year-old mother.

MarySue Phipps, essential caregiver to her mother, Lucille Harris.

Maxine Schwartz, essential caregiver to her mother

Melody Taylor Stark, essential caregiver to her husband, Bill

Merrily Caldwell, essential caregiver to her mother

Mindy Cain, essential caregiver to her father

Nancy Klein, essential caregiver to her son

Paula Fowler, essential caregiver to her father

Rachel Sanchez, essential caregiver to her mother

Regina Clemmer and Ashley Patrick, essential caregivers to their sister

Veronica ``Roni'' Ferraro, essential caregiver to her husband

Sam Kukich, essential caregiver to her grandmother

Sandra Waters, essential caregiver to her mother

Sharon Echtmann, essential caregiver to her husband

Sherri Ustich, essential caregiver to her special needs daughter

Sommer Reider, essential caregiver to her mother

Susan Groseclose, essential caregiver to her husband, Dennis

Suzanne Von Bargen, essential caregiver to her mother

Todd and Marla Carter, essential caregivers for Tanya, Freddy, and Linda

Victoria Cerrone, essential caregiver to her father, Vittorio

Bridgette Gianturco, essential caregiver to her mother, Joy Preston

Jaime, essential caregiver to their mother, Jeanette Hohler

Bernadine Chapman, essential caregiver to her brother

Courtney Templeton, essential caregiver to her mother

Cynthia Hadden, essential caregiver to her father

John Carlone, essential caregiver to his mother

Lynn Norman, essential caregiver to their mother, Connie Power

Denise Bogan, essential caregiver to her mother, Gabrielle Lewis

Sally Raque, essential caregiver to her 90-year-old mother

Julie Lewis, essential caregiver to her 80-year-old father

Amy Mcguire, essential caregiver to her mother, Frances Dowell

Rick Winter, essential caregiver to many through the years

Karen Basso, essential caregiver to her husband, Derek Franklin Basso

Erma Hall-Thomas, essential caregiver to her older sister

Roietta Combs, essential caregiver to her father

Stacey Palant, essential caregiver to her mother and late father

Deborah Buchanan, essential caregiver to her mother

Catherine Carlton, essential caregiver in northern New Jersey

Virginia Andreoli Muscarella, essential caregiver to her father, Fred Andreoli

Cindy Tate-Gibson, essential caregiver to her mother

Beth Nelson, essential caregiver to her husband, Stanley Fullwood

Kathleen McCartney, essential caregiver to her mother, Mary

Cindy, essential caregiver to her 91-year-old mother

Patricia Cladek, caregiver to her mother, Doris

Crystal Ton, essential caregiver to her son Jackson

Patricia Medeiros and Maria Tavarozzi, essential caregivers to their mother

Mariam Barakzoy, essential caregiver to her mother

Marilynn Lester, essential caregiver to her 87-year-old mother, Ruth Lester

Teresa Trimpler, essential caregiver to her parents, Maria and Enrique Hernandez

Simone Kraemer, essential caregiver to her mother

Ila Haymaker, essential caregiver to her mother

Tim Wall, essential caregiver to his mother, Peggy Martin Wall

Maitely Weismann, essential caregiver to her mother, Celia Weismann

Charles Galligan, essential caregiver to his father, Jack.

Each of these individuals submitted testimony to my office that is just as powerful and compelling as the seven stories I shared with you this evening.

As I said, I will post these testimonies on my website and, hopefully, throughout the next year and a half, I will be able to speak about each one of these people who have given essential care on behalf of a family member and the loss that these people suffered over the next several months.

I encourage each member of this body to take time to read these stories and hear the pleas of those who suffered. The one bit of solace I take from these stories is that the elected Members of Congress here tonight can do something to prevent these tragedies from ever happening again.

We stand together and support passage of the bipartisan Essential Caregivers Act. It will protect these individuals and their loved ones from any future harm.

I want to close by thanking Congressman Larson from Connecticut for leading this bipartisan effort with me. I also want to thank the bill's other cosponsors: Elise Stefanik, John Rutherford, Yvette Herrell, Madison Cawthorn, Abigail Spanberger, Ted Budd, Jeff Van Drew, and Steve Cohen.

Tomorrow morning, I will be joined by caregivers from all over the country at the Capitol steps to call for the House to take up our bill and make right this injustice. No individual deserves the indignity of suffering alone. We can fix this, and we must.

May God bless all of those who suffered and all of those essential caregivers around our Nation. We are grateful to you.

Madam Speaker, I yield back the balance of my time.

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