Home Care and Independence

Lee-Ann Quinn with son Zach. (PBN PHOTO/MICHAEL SALERNO)

My name is Zach Quinn and in many ways, I’m similar to other 22-year-olds that are around me: I love board games, video games, and movies. I love my family—even though my three little sisters get on my nerves sometimes. 

But I’m very different from just about every other 22-year-old I know in one big way:  I have Duchenne Muscular Dystrophy (DMD), and I rely on home health care services for nearly all of my daily activities. These nursing and certified nursing assistant (CNA) services allow me to be as independent as possible—and allow me to live, in many ways, like my non-medically complex peers. 

DMD is a degenerative neuro-muscular disease that causes the muscles in the body to weaken. DMD led to the loss of my ability to walk, and my needing a wheelchair. It has also led to the loss of lung function, which required me getting a trach and vent to breathe for me. I need to be medically monitored to stay independent, which is why I rely on home care in my daily life.

I wanted to write this blog post as a way to show the wider world that being disabled doesn’t make me—and others like me—so different, as long as we have the proper care in place. Home care allows me to maintain my independence. It takes a lot for me to do that, but it is worth it. I need nurses and CNAs to get ready every day. They help me get washed and dressed so I can get up in my wheelchair and start my day without my parents’ help. This makes it so I can hang out with my family, go out in my community, and be myself. I appreciate the life I have because of the care I receive from my nurses and CNAs, and it has changed my life.

Zach with his siblings and home care nurse, Jeff.

I truly believe that home care is the future of healthcare, and that so many more people could benefit from it if it was more readily accessible. Home care keeps disabled adults and seniors out of nursing homes and other facilities, and it keeps medically-complex children and adults like me independent in our communities. From a wider scope, this allows many people to grow up at home, go to school, contribute to the economy, and contribute to the community. Also, by keeping people out of costly places like ERs, hospitals, and long-term rehab and nursing facilities, it saves state budgets’ and families’ money. 

I truly believe that home care is the future of healthcare, and that so many more people could benefit from it if it was more readily accessible.

Another purpose of this blog post is to show what happens when things fall through. There is a huge gap in people’s ability to access home care, even if they and their families prefer to be at home. I’m no exception. I have had great nurses and CNAs leave the home care industry, which has led to my parents having to call out of work. They usually leave for better paying jobs—which is great for them, and often necessary so that they can support their own families. But it really affects me—it makes my care unpredictable for me and my parents, and makes it more difficult for them to count on care and know that they can sleep and work normally.

It also makes it a “revolving door” of caregivers in many ways. This has its own layer of problems, but in the end, the best way to prevent this is to ensure that caregivers like nurses and CNAs can make a sustainable wage and living in home care.  I studied Digital Media in high school, and I wanted to pursue a career in video game design. There are so many individuals in RI and across the US and the world who are able to live good lives, get jobs, and provide to the economy and community as long as good home care coverage is available. I don’t belong in a nursing home—I belong in my own home, and in a place where I can design video games!

Zach and family with Rep. Julie Casimiro during a home visit a few years ago.

But I can’t accomplish any of this without home care. We need to make sure that enough people want to work in home care—that it is a rewarding and compassionate career path. In my home state of Rhode Island, and in nearly every other state in the US, professional caregivers like nurses, CNAs, and home health aides are paid less than their counterparts in other settings—like hospitals. This keeps institutional care as more readily accessible to people who need long-term support. The federal government and state legislators must make sure that home care is a viable career by funding home care programs better. This would allow nurses, aides, and other caregivers to be paid a fairer wage—and would allow more of the workforce to enter home care. 

There will be a long time before we can say that home care is as accessible as care in other places. But this is one way to start.

After all, isn’t celebrating individual independence a huge and important part of our collective American culture?

2019 National Ambassador of the Year: Shelby Myers

Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors. 

Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country. 

A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own.  For these reasons and many more, Shelby was the clear choice as the 2019 honoree.

Shelby Myers:

“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”

Government Affairs Office Continues Advocacy Efforts in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

This week, the Government Affairs Office (GAO) traveled to Massachusetts to advocate for amendment 513. The amendment requires the state to collect and make publicly available data on the hospitalization costs of the continuous skilled nursing population. This was accepted in the Senate budget and now needs to be approved by the conference committee. Our request is that the legislature approves the amendment but requires the data to be available by December 31.

MassHealth Announces Second Rate Increase In The Face Of Budget Deficit

Submitted by Laura Ness, Director, Government Affairs (GAO)

Last week, Chief Government Affairs Officer Dave Totaro, Boston Pediatrics Director Emery Hughes, and other industry leaders and families gathered together to meet with MassHealth.  MassHealth had asked for the meeting, in regards to the Continuous Skilled Nursing (CSN) program.  During the meeting, MassHealth stated that they recognized that low reimbursement rates were a major problem within the program.  They have planned to increase the rates by 2.25% effective July 1, 2017.  This is the second reimbursement increase we have been notified about within three months.  The organizations working to increase this rate were pleased with this movement but recognized that this is a fraction of what is needed to stabilize the rates.  We look forward to continuing our efforts to increase the CSN rates by a total of $15 per hour.

Supporting Home Care at the Rhode Island State House

Submitted by Rick Hynick, Director of Client and Family Advocacy

On Tuesday, April 11, a crowd of people gathered at the state room in the Rhode Island State House to thank those in our state government who support the many children, adults, and their families who rely on home care. The gathering was part of an event planned on behalf of BAYADA and the Rhode Island Partnership for Home Care.

“We’re here today to thank those legislators who have listened to your conversations and heard your challenges, and have become steadfast supporters to make your lives and the lives of your children better,” said BAYADA Chief Government Affairs Officer Dave Totaro. Dave and other representatives from GAO partnered with Rhode Island Skilled (RIS) pediatrics Director Ashley Sadlier and her staff to make the event a success.

State Representative Gregg Amore was presented with a 2017 Legislative Advocacy Award for his tireless work to back the needs of his constituents and the many other residents of the state who use home care services on a daily basis. Senator Hannah Gallo was also recognized but could not be present. Additionally, Lieutenant Governor Daniel Mckee spoke about the important role home care plays in the lives of many Rhode Island residents.

Mr. Mckee and Rep. Amore continued to discuss the positive impact of home care, to the great interest of our clients and their families who were present in the audience. These families—the very people who rely on having nurses to provide clinical care to their loved ones—can offer firsthand testimony as to why home care is so vital.

Eric Olson—the father of client Liam and a long-time home care advocate—explained that the nurses who work with his son have such a connection with him. They understand that many of Liam’s movements are actually the way he communicates what kind of care he needs from moment to moment. He went on to explain that, without the close connection that the nurses have with his son, Liam would not be where he is today. With their help, he has thrived, despite his dependence on many mechanical devices. Eric went on to underscore how important it is that the families work with the elected officials, as they have the ability to make positive change.

“Our goal today was to bring enough of these voices together so we can start to make a difference.  Not just for families in this room, but for all families who want to keep their loved ones at home,” Dave said.  Side by side, BAYADA and the Rhode Island Partnership for Home Care provide significant support to the goals of legislators and families who depend on home care. We are working together for a better tomorrow for all home care services in Rhode Island.

A Day in the Life of a Massachusetts Mom/Advocate

Submitted by Rick Hynick, Director, Client and Family Advocacy

On February 27, several BAYADA employees, home health care family members and others working toward getting a patient bill of rights passed, gathered at the state house in Boston to meet with legislators.  Lisa B. was en-route with her son, an adult home care client in his early 30s, and his son’s nurse.  Their goal for the day was to speak with different elected officials about the need for a rate increase for continuous skilled nursing services and to advocate for a patient bill of rights that is making its way through the legislative system toward becoming a law.  Just four miles from the state house, Lisa and the nurse saw that her son’s medical condition had changed and they quickly pulled their van over near the outskirts of a public park to help him.  He was struggling to breath due to a mucous plug.  In addition to this, he had lost control of his bowels.  As they pulled off the road, it happened to be near where an undercover police officer was working.  Startled by their presence, the officer approached them.  It took a bit, but Lisa and the nurse were able to clear the plug and get him back to a normal status.  They also changed his clothing and got everything back to normal.  The police officer was so motivated to help the family that he provided them with a police escort to the state house.  As a result of their dedication to the greater cause of helping people with special medical needs, they were still able to meet with senators and representatives and discuss the importance of home care nursing and the patient bill of rights from the perspective of the family.

BAYADA Sponsors Second Lobby Day in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

The Government Affairs Office (GAO) organized a second lobby day for continuous skilled nursing providers and parents to discuss our Patient Bill of Rights.  With over 27 meetings scheduled, we focused on meeting with our legislators that sit on important committees and introduced our need to file a budget amendment to support the increased reimbursement rate needed to compete for a median of nurses.  The day was successful, as we lined up House and Senate budget amendment sponsors and additional co-sponsors for the bill.  As stated by the lobbyists from the Home Care Alliance of Massachusetts, we “have set a solid foundation to build upon.” Next, we wait to see where the House will assign the bill and wait for a budget hearing.

Making The Rounds in North Carolina

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

BAYADA Chief Government Affairs Officer Dave Totaro and I met with key lawmakers this past week, seeking their support for a rate increase for aide services under three Medicaid programs – Personal Care Services, Community Alternatives Program for Disabled Adults (CAP-DA), and CAP for Children (CAP-C)- in two different settings: in-home care and adult care homes.  While the lift is heavy, $47.8 million to bring the rate from $13.88 to $17.00 over two years, our conversations were positive.  We also met with the newly appointed but not yet confirmed Secretary of Health & Human Services, Dr. Mandy Cohen.  A good round of meetings!

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Dave Totaro, Lee and Dobson Rep. Carla Cunningham, who is a nurse

BAYADA Sponsors Second Lobby Day in Massachusetts

Submitted by Laura Ness, Director, Government Affairs (GAO)

The Government Affairs Office (GAO) organized a second lobby day for continuous skilled nursing providers and parents to discuss our Patient Bill of Rights.  With over 27 meetings scheduled, we focused on meeting with our legislators that sit on important committees and introduced our need to file a budget amendment to support the increased reimbursement rate needed to compete for a median of nurses.  The day was successful, as we lined up House and Senate budget amendment sponsors and additional co-sponsors for the bill.  As stated by the lobbyists from the Home Care Alliance of Massachusetts, we “have set a solid foundation to build upon.” Next, we wait to see where the House will assign the bill and wait for a budget hearing.

Buzz Builds About Continuous Skilled Nursing Program in MA

Submitted by Laura Ness, Director, Government Affairs (GAO)

On January 10, BAYADA hosted a lobby day in Boston with members of the Continuous Skilled Nursing (CSN) provider coalition, the Home Care Alliance of Massachusetts, and the Pediatric Home Nursing Care Campaign (a coalition of parents and grandparents).  During the lobby day, we introduced a Patient Bill of Rights that will allow for adequate reimbursement rates and other protections for those receiving services under the CSN program.  Since then, BAYADA testified along with other providers and parents about the need to increase the rate.  We have also obtained over 50 sponsors to our bill, and sent over 400 emails to legislators about the bill.  Most recently, one of the parents was featured on the CBS local affiliate WBZ Boston.  The video could not have made our point more clear.  See the full video here. The campaign was also featured in the Boston Globe the day after our lobby day. Click here to read more.