On April 9, more than 300 home care advocates—clients, families, caregivers, and employees—joined the Pennsylvania Homecare Association (PHA) at the state capitol in Harrisburg. Advocates met with hundreds of the state’s representatives and senators to deliver an important message: Home care is important to me, and it should be important to you too.
Check out pictures from the legislative reception, the kickoff rally, legislative day meetings, and the PHA press conference! Care about home care and want to share your voice? Check out heartsforhomecare.com or email email@example.com to find out how you can get involved in advocacy today!
Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.
Meeting Addy and Gloria
First, the team stopped by a BAYADA service office in Dover, NJ to meet the staff and learn about the struggles the office regularly faces in recruiting and retaining home health aides. Per staff member Helena Anton, challenges lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that “you can tell are put on this earth to care for others,” as Helena puts it.
“Smaller home health care companies can usually pay the caregiver more in wages because we put that money into benefits, training, and supplies. But the real problem is that Medicaid reimbursement rates are so low that these caregivers—no matter what company they work for—aren’t making enough. That’s why we need to advocate to make sure the state sees how low wages are impacting so many New Jerseyans that are able to live and their communities and thrive with home care,” added Helena.
After the discussion, the Hearts for Home Care advocates met home care client Addy and her aide Gloria. The crowd was nearly brought to tears by Addy’s story regarding the challenges she has been able to overcome with her “teammate”—which is what she calls Gloria.
“I was extremely touched by Addy’s and Gloria’s relationship. Not only is it clear how much Gloria has impacted Addy’s daily life and her sense of self-worth, but the way that Gloria talks about Addy’s influence on her own life is incredible. You can tell that Gloria was truly put on this earth to be the nurturing, compassionate caregiver that she is,” said Tara Montague.
Recently, Addy and Gloria visited Senator Steve Oroho to share their story and to advocate for better state home care policies. “Helping people is important. And it’s important that those who help others get the help that they need too,” Addy told the group. Addy recommitted to continuing to advocate for herself and for others who are impacted by home health care. “I want to share my message with legislators. It’s my way of giving back,” she said.
Lili and Emma Welcome Advocacy into Their Home
Next, Dave, Tara, and Alisa traveled to Morristown to visit home care client Liliana “Lili” and her mother Emma in their home. As a single mom, Emma relies on home nursing so that she can keep her full-time job and keep Lili at home. She told us that her service office team works hard to ensure that every one of Lili’s shifts are covered. She also shared about times when that coverage wasn’t so steady: “Our routine and our comfort level is only as good as today…When Lili’s main nurse Liz retired, we had a few months where we didn’t know what tomorrow would bring.”
Lili benefits from New Jersey’s private duty nursing (PDN) program, which allows for children and adults with skilled care needs to live at home. Without this program, it is unlikely that Lili would have been able to grow up with her mom and graduate from school as she did. The PDN program’s rates need to be raised in order to better attract more nurses to home care, as most can currently make a higher wage delivering skilled care in a hospital or nursing home. One of Hearts for Home Care’s major advocacy goals for 2019 is to educate legislators on the need for a rate increase and to secure one on behalf of all New Jersey home care clients, families, and nurses.
Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that other families can receive the home care that they need too. In recent years, Emma has hosted state elected officials in her home. “Seeing our daily routine and how important it is for Lili to have a nurse at home is the most impactful way for an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili, but for those in the state who are struggling to get the nursing they need.”
“It’s our clients’ and families’ voices that make the biggest impact on our state and federal elected officials’ decisions about home care. Because of advocates like Addy and Emma, legislators better understand the impact home care has on their communities,” said advocate Dave Totaro, who also serves as BAYADA’s chief government affairs officer.
There are plenty of ways to advocate, even from home! To find out ways that you can make an impact, contact us at firstname.lastname@example.org. Together, we can share our voices to make 2019 the best year for home care yet.
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.
Last summer, as lawmakers in Washington, DC debated health care reform, Tara Montague had cause for concern. The proposed legislation included significant cuts to Medicaid, which for Tara and her family, could have been disastrous.
Tara and her husband, Jim, rely on home care nursing for their daughter Mary, 20, who has spinal muscular atrophy (SMA). They know that many families turn to Medicaid to cover the cost of home care and feel fortunate to have private insurance for Mary’s nurses. However, they depend on Medicaid for Mary’s prescriptions and medical equipment, which total in the thousands each month.
“Mary is on numerous medications, and her medical equipment includes a ventilator, oxygen, a wheelchair and hospital bed, feeding pump supplies, a nebulizer, pulse oximeter machine, and more,” said Tara. “Without Medicaid, I don’t know what we’d do, and that’s why I fight so hard to get Mary the benefits she needs.”
Giving families a voice
As a parent of a child with special needs, Tara can understand and empathize with our clients’ daily struggles because she lives it, every day. Last year, she joined BAYADA’s Government Affairs office as manager of client and family advocacy. Here, she continues to fight for Mary, and for every pediatric and adult client who depends on home health care to live with comfort, independence, and dignity.
“Last summer I worked with BAYADA clients who were willing to share their stories with federal legislators to help prevent the Medicaid cuts,” said Tara. “As I continue to grow in this new role, I hope to encourage more and more families to speak up, to have a voice, and to know that they can make a huge difference in the legislative process.”
Getting involved is quick and easy
Tara knows all too well that for clients and families, the biggest obstacle to getting involved is time. That’s why she encourages them to register with BAYADA’s Hearts for Home Care Advocacy Center at heartsforhomecare.com.
“We are not looking for a huge time commitment, it’s whatever they feel comfortable with doing,” she said.
The mission of Hearts for Home Care is to be a voice for BAYADA employees, clients, and their families. Through education, advocacy, research, and community service, BAYADA advocates for policies that support the highest quality of home health care services. The online advocacy center keeps clients and families informed about legislative issues at the state and federal level that can impact the home health care industry, and their access to care.
Advocacy can be a simple as taking five minutes to log onto the Hearts for Home Care Advocacy Center website and sending a pre-written email to local, state, and federal legislators. If clients and families want to do more, they can share their stories on the Hearts for Home Care Advocacy Center website; attend a lobby day at their state capital, a legislative round table, or a town hall; they can visit a legislator’s office; or invite a legislator into their home to see, first hand, how home health care professionals help improve lives.
Connecting with families and sharing stories
Tara has a degree in political science and extensive experience in marketing. In her previous role as a community liaison with a BAYADA Pediatrics office in New Jersey, she educated physicians about home health care, started a parent support group, coordinated a family resource fair, and helped families navigate through insurance challenges.
In her new role she hopes to develop training materials and tools for clients and families who want to become more active in advocacy efforts. But even more, she is looking forward to getting to know clients and families from across the country, and helping to share their stories – just like Mary’s.
To learn more about Hearts for Home Care, how you can get involved with advocacy, or how you can share your story, contact Tara at 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.
Submitted by Rick Hynick, Director, Client and Family Advocacy (GAO)
Having worked closely with clients and their families at BAYADA for many years, one of the most important values that can be seen in the relationships families have with their caregivers is trust. Charles Milliner, a long-time client knows this very well. “When you have a caregiver that is a good match, trust grows between the client and caregiver,” Milliner explained. “I know that my caregiver not only wants the best for me, from the care perspective, but also for standing up for home care as an advocate because we have to think about tomorrow. There is an unseen mutual respect that evolves creating a very strong bond based on human trust, respect and compassion,” Milliner concluded.
Submitted by Louise Lindenmeier, Director, Government Affairs (GAO)
Care Connection client newsletters mailed out to clients throughout NJ at the end of September included a tear-off flyer about Hearts for Home Care. The top half of the flyer briefly describes the H4HC program and how important it is for clients and families to share their voices. Clients can fill out the bottom half and indicate how they would like to be involved in advocacy in the future. The page can be torn off and folded and has pre-paid postage on it so all a client has to do is staple or tape the top and drop it in the mail.
Please encourage your clients to complete the flyer and mail it back. Or you can even ask them to complete the flyer during a visit and then put the flyer in the mail on your way out. Thanks in advance for your help with this important initiative.
Submitted By Rick Hynick, Director, Government Affairs, Client and Family Advocacy
The Client and Family Advocacy program has some exciting updates that are underway. When you have a moment, visit our advocacy website at Heartsforhomecare.com and see first-hand about many of the ideas we are working on. Once you get to the site, click on Families and the Community. Here you will find many exciting ways to be part of our advocacy program. Read of a heart-touching story of a Mom who is now involved with advocacy to help her daughter and others like her. Find an opportunity to share your story and learn of the many ways you could participate in advocacy as well as staying connected with news and resources and a blog.
We are also working on the development of a Grassroots Advocacy plan for our clients and families and staff. Giving our valued clients and staff a voice and involvement in advocacy activities such as meeting with a legislator or writing a letter or attending a community event as part of a larger movement could strengthen our voice in home care and help us to obtain better resources so we can have a positive impact and give our clients the highest quality of care. We are also working side by side with Mike Sokoloski, our Manager of Grassroots Advocacy to move forward with a plan than combines advocacy efforts of employees and clients together to work toward a personal assistance OLTL rate increase.
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 Mike Sokoloski, Manager, Grassroots Advocacy
Lindsey Wright is the Ambassador that is always looking to help, like the first time I met her. -GAO Director Laura Ness and I were on our way to the PA Art Museum, next to the PA State Capitol. As we approached, there was Lindsey. She was waiting on the sidewalk and on the phone talking and guiding a colleague to the building for our PA Legislative Day.
At the 2017 PA Legislative Day, Lindsey was able to spend 45 minutes with Senator Daylin Leach. -It was a very candid conversation addressing all of our concerns, but specifically presumptive eligibility and an increase in the PAS rate for home care employees who work so hard for our clients. Lindsey fostered this relationship with the senator. She kept in touch with the district office director for Senator Leach, Judy Trombetta. Lindsey worked diligently with two BAYADA Pediatric offices (PAO and WGP) to provide sponsorship for Senator Leach’s Kids Fair in Philadelphia, and Lindsey volunteered at the event!
In July, GAO coordinated a Client and Family Day at Temple University Kiva Auditorium. GAO staff, CRO Division office and field employees, clients, and families had interactions with Philadelphia area elected state government legislators and discussed the pressing needs of our field staff, clients, and families. The first person at the auditorium that day to assist with anything we needed: Lindsey Wright.