BAYADA Home Health Care client and Hearts for Home Care advocate Dimpal Patel shares her view on home health care in an opinion submitted to her local newspaper.
I might sound like your typical local 23-year-old: I recently graduated from UNC Charlotte with a bachelor’s degree in marketing. I absolutely loved living independently on campus, and I love to play games and watch movies. But I am very different from most 23-year-olds you know because I rely on a trach and ventilator in order to survive, and it’s because of my home care nurses that I am able to grow and thrive independently.
My two BAYADA Home Health Care nurses—Chastity and Toni—have been with me for nine and six years each. They are like family to me, and they really are lifesavers. Without them, my parents would not be able to work and keep me at home, and I certainly would not have been able to experience college life. Chastity and Toni not only provide me with the skilled services that I need to survive, but they really are like best friends to me. I can’t imagine what my life would be without them—not only would it be without my two friends, but I’d likely be stuck in the hospital, a nursing home, or rely on my mom or dad to quit their job to take care of me.
My worst fear is that lawmakers cut Medicaid funding like they tried to do in Washington last year. If this happened, not only would I likely lose my nurses, but I’d be at risk of having to move into a nursing home. As someone who has experienced living independently and how it has allowed me to earn a degree and contribute to society, I ask that our state and federal legislators be mindful of what funding and service cuts can mean—not only to the state’s financially needy or to the elderly—but to 23-year-olds like me who want to continue living a full life.
Imagine this scene: A woman feels a familiar, nagging stiffness in her lower back as she leans over the edge of the tub to bathe her teenage daughter. Her daughter, who has a significant degenerative muscular disease, sits quietly and securely on a customized bath chair that fits snugly inside the tub. The tub area is decorated with different pieces of adaptive equipment such as a specialty grab bar, floor mat, hand-held shower head, and other items to make the bathing process possible for a person who cannot physically jump in and out of the shower. From start to finish, the entire bathing process takes more than an hour to safely complete.
Whether it is giving a bath, doing a tracheostomy change, starting a gastronomy tube feed, or transporting someone with multiple pieces of medical equipment, families who care for a loved one with a significant medical condition live a vastly different lifestyle than many other families. This lifestyle is not easily understood unless you’ve experienced it.
Legislative advocacy makes a difference
We have learned that when our clients and families talk to our elected officials and the people who make decisions about health care funding and regulations, it makes a difference. We have seen clear evidence across our country that when more people speak up, creating a stronger and louder voice, it is more likely that government-funded insurances—such as Medicaid and Medicare—will adjust funding and regulations to benefit families.
Many of our elected officials have personally not had the experience of bathing an adult child, performing a tracheostomy change, or providing the other types of medical and personal care that are frequently needed in the home. It’s also sometimes forgotten that this care is not just provided once a week or month, but many times a day or week, over years—over a lifetime. The continuous nature of these care needs is what makes home health care services so necessary.
We consult with legislators and insurance officials and ask for increases in our reimbursement rates so we can hire more employees and reduce open shifts for our clients. Our requests often are not approved. However, when the families who actually use the home care services join with us, it makes a big difference.
When clients and families explain why it is important to them not to have open shifts or why their paid caregiver needs a better wage, and share their personal experiences from within the home, it helps these officials understand the need for home care. The people who we petition for increases and better regulations are the same elected officials you vote for, and who are entrusted with serving the best interests of those they represent. This is at the heart of how and why people gathering and joining voices can make a difference. This is the heart of client advocacy.
How can you get involved?
Think about your personal experiences and consider what it’s like to care for a loved one who is in your home or nearby. Let’s unlock those firsthand experiences about the difference a home care nurse, aide, or therapist makes in the care that your loved one needs or receives. Voices of families coming together can create opportunities. Better insurance reimbursement can help us recruit more nurses and aides to fill open shifts. Better wages can mean a more sustainable career for home care workers, which in turn allows more people to remain at home while they receive the care they need.
South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.
During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.
In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.
Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”
After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”
“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”
Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email email@example.com.
Client advocacy matters more than that of home care industry professionals. While home care professionals can share facts and figures about home care with legislators, it is clients’ stories that truly paint the picture of what home care means to legislators’ constituents.
Whether a home care client is an infant, senior, or any age in-between, it is very likely that the nursing or aide services that they rely on is from a Medicaid or Medicare program. What this means is that government officials are the ones making the decisions on care regulations and reimbursement rates rather than those who are regularly affected by home care. Home care providers must accept these rates and regulations and provide care to the best of their abilities based on what the government has set forth rather than on what is actually best for clients and their families.
Home care employees regularly see that many of the government reimbursement rates for home care are low and have not been increased in years. This has a domino effect in that if providers can’t bring more revenue in, they can’t pay higher rates to attract more staff to care for current clients or for new clients who will need care in the future.
Many areas of our country are starting to age and will need caregivers to allow people to live in their homes instead of in facilities, yet projections indicate fewer people want to be professional caregivers due to the industry’s low wages. Additionally, more nurses are choosing employment in other types of settings, which makes it difficult for many home care clients to have adequate nursing coverage because facilities such as hospitals can pay nurses a higher wage.
As elections come and go, we see changes in our government leaders and with these changes come the possibility of healthcare policy changes. These changes can be sudden and unpredictable, and these changes often threaten funding cuts to important programs such as Medicaid or Medicare. Any funding cuts to these programs would be devastating to home care providers and to program beneficiaries.
The interesting thing is that the representatives and senators who we vote for at the state and federal level make these decisions, and few of them have strong healthcare backgrounds. In addition, it is their job to represent all of the people from their respective districts to the best of their abilities. While provider employees can share their voices through legislative meetings, clients’ and their family members’ advocating and sharing their stories matter most.
Clients who benefit from home care and their family members have their own special stories to tell. As the end users of nursing and aide services, clients and family members have the first-hand knowledge of how the Medicaid and Medicare programs are working and what could be done to improve them. Clients names, faces, and shared stories paint a far more detailed picture of home care than industry professionals can with facts and figures. When legislators vote on issues related to home care, clients stories are better-remembered, and legislators are much more likely to vote for favorable home care policies with these in mind.
“I’ve been an advocate for my wife, who is 100 percent dependent, for 16 years,” said Mike Pollock, the husband of a client who advocates to protect home care for his wife and all who need services. “Thanks to Medicare and Medicaid and BAYADA, I’ve been able to care for her at home. Although Medicare and Medicaid are excellent resources, they have their issues. An excellent resource for solving these issues are our elected officials,” Pollock said. “In fact, elected officials are the only people capable of fixing issues that arise within Medicare and Medicaid. But they can’t help if they don’t know what we as family caregivers are dealing with every day. Never hesitate about reaching out to them. It’s been my experience they are eager to help,” Pollock concluded.
By putting advocacy into action and connecting our clients to their elected officials, there is a far better chance that Medicaid and Medicare will be protected and grow with the needs of our clients. Please email me at firstname.lastname@example.org for more information related to client and family advocacy and what you can do to help protect and strengthen the home care industry in your state and at the federal level.
In December at the BAYADA Home Health Care Champion Awards we reflected on a year of many victories and looked ahead to a new year with new challenges. Speakers, awardees and nearly 100 guests celebrated the successful increase of NJ’s fee-for-service rate for personal care assistants to $19 per hour. We also acknowledged employees’, clients’ and home care industry friends’ commitment to advocacy. These efforts led to the passage of A320/S1018, which was signed by Governor Christie earlier this year. Effective this July, A320/S1018 requires Managed Medicaid reimbursement rates for home health aide services to be at or above the state’s fee-for-service rate.
An inspirational highlight of the night, those in attendance were moved by Dana Insley’s touching speech. Dana is the mother of a young client who had a difficult start to life. Dana’s daughter was placed in foster care before being adopted by the Insley family. Dana spoke of the blessing home care has been in her family’s life and discussed the significant improvements her daughter has made with the support of her BAYADA nurses.
The evening’s honorees, Lieutenant Governor-elect Sheila Oliver, Senator-elect Declan O’Scanlon, and Assemblywoman Nancy Muñoz were visibly moved by Dana’s remarks and reiterated their support for home care during their acceptance remarks.
Also honored at the ceremony was Assemblyman Paul Moriarty, who represents New Jersey’s 4th District, which encompasses the Insley family’s home. Assemblyman Moriarty had visited the Insleys home in the past and was able to glean a full and meaningful understanding of the day-to-day life of a child receiving home care.
After a heartfelt evening that reminded everyone of our purpose and why we do what we do, Chief Government Affairs Officer David Totaro took the stage to remind all of those in attendance of the importance of advocacy and that, in addition to words, action is needed. He noted the huge impact of New Jersey advocates, who sent nearly one-quarter of all messages directed to federal legislators this summer from BAYADA’s network during the health care reform debate. Thank You for your commitment to advocacy.
Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)
Often we talk about sharing our message, making our point, and communicating our value proposition. Those are things we, in the Government Affairs Office (GAO), must do as we seek support for our issues with lawmakers. One such conversation was had with Representative Nelson Dollar earlier last week, where Chief Government Affairs Officer Dave Totaro and I thanked him for his past support on the rate increases and continued our conversation around our priorities for the year to come.
If we are to continue to be successful in building a strong advocacy base, it is not enough to build relationships with lawmakers. We must also get to know our internal BAYADA customers–our staff and clients. As such, we visited six home health offices on the I-85 corridor. It was great to be able to provide a legislative update, share advocacy information, and solicit feedback. It helps ground our efforts and put things into perspective.
Special thanks to Division Director Richard Hopson, Area Director Shad Morgheim, and the office directors for allowing us to visit. We really enjoyed visiting with staff at CV, CHF, GAV, CAV, SC, DAV, RV, and DRF.
Submitted By Rick Hynick, Director, Government Affairs, Client and Family Advocacy
At BAYADA, we often see that many of the government reimbursement rates for programs such as Medicaid are low and have not been increased in long periods of time. The difficult effect this has on our revenue then carries over on our ability to offer pay rates that are attractive to nurses and aides seeking employment. They sometimes accept other offers because of this, making recruitment a challenge and also making open shifts more prevalent.
There are ways that we can work together to combat this challenge. Our service offices have wonderful relationships with our clients and family members. It is these people who we provide services to who have the best understanding of what it is like to live minute-by-minute with complex medical needs. Government Affairs and service office staff working together have the best opportunity get the voices and real-life experiences of our clients out to our legislators who can make a difference.
Our legislators have the responsibility to represent the people who live in their districts and also to control the reimbursement and regulatory matters of most of our government funded programs. Our goal is to show the true needs that exist by getting voices of the clients to them so when it is time to vote or make a decision about an important topic such as reimbursement, they will do so with the best information possible at hand. -Over time, this will lead to higher reimbursement rates and better living wages for our staff allowing us to better align with The BAYADA Way and help more people.
A BAYADA client advocates for better HHA wages with legislators and families looking on.
The daughter of a BAYADA client and a BAYADA nurse at an advocacy event.
Submitted by Laura Ness, Director, Government Affairs (GAO)
It takes a special and highly trained individual to become a pediatric nurse. You need to have the heart, be able to work independently and respond to the needs of your clients at a moment’s notice. Because of the difficulty finding nurses to care for medically fragile children, families often have services from more than one agency, open shifts, or in some cases stay in the hospital longer than needed.
Recently, two regional news states featured two families whose children were not able to come home because of the lack of skilled nursing available.
Submitted by Louise Lindenmeier, Director, Government Affairs (GAO)
As we continue on our PCA journey for increased reimbursement rates, the next effort to increase the PCA reimbursement rate now sits on the governor’s desk. A320/S1018 would require the minimum reimbursement rate for PCA in managed Medicaid to be no lower than the state’s fee-for-service rate. Currently, we are asking all the PCA aides and clients to sign and send letters to the governor’s office, urging him to sign the legislation into law.
Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)
On May 26, as part of the Home Care Association’s Advocacy Day, our client, Victor Muniz, spoke during a press conference held by Senate Majority Leader Loretta Weinberg. Victor, who receives personal care assistance through the Jersey City (JC) office, shared the importance of home health aides in his rehabilitation and his ability to live independently. In addition, William Chambers, father to Perth Amboy (PER) client Billy Chambers, spoke about how home health aides enable him to continue to care for his son at home, but there is a strong need for increases in reimbursement rates. He stressed that aides are simply not paid enough money for what they do.