Just like many new parents across South Carolina and the US, Christina and Aaron Walker are excited to bring their newborn baby boy–William–home from the hospital. But unlike most other new parents, they can’t. That’s because William was born a little more than three months early, with medical complications.
But it’s not the complications themselves that have restricted William to the NICU–but rather, the lack of in-home nurses in the state. Baby William is medically cleared to go home, but the hospital cannot discharge him until an in-home nurse is available to care for him at the Walkers’ Bradley residence.
“The State hasn’t increased funding for the Private Duty Nursing (PDN) program in more than a decade. As a result, agencies that hire and provide in-home nurses to families like the Walkers can’t recruit and retain enough nurses to keep up with the demand,” says BAYADA Government Affairs Director for South Carolina Melissa Allman.
In the past decade, costs of living have gone up tremendously, and so home care agencies are struggling to pay nurses fair wages and stay sustainable as the funding has stagnated. PDN program funding must cover nurses’ wages–plus training, benefits, supervision, and supplies. Rates are so low, that many agencies have even left the state entirely.
Moreover, nurses are attracted to institutions and other settings–such as nursing homes, hospitals, and doctors’ offices–where they can earn more in wages. “The backwards part is that the state can save money and keep families together by keeping medically-complex residents at home and out of institutions. It’s a win-win,” says Melissa.
Christina and Aaron are celebrating every milestone that William reaches in the hospital. At five months, they are more than ready to take their baby boy home. Children deserve to grow up at home among their peers and loved ones. But if the state does not address PDN program funding in a way that ensures agencies can stay sustainable and raise nurses’ wages, then there will be more cases like William’s, where parents must continue to visit the NICU or another facility to see their son or daughter.
Read more about William’s journey here. If you know of a qualified nurse that is interested in caring for William, contact BAYADA Home Health Care at 864-448-5000. If you would like to learn about ways in which you can advocate for better nursing wages in South Carolina or elsewhere, contact Hearts for Home Care at firstname.lastname@example.org
The facts are clear: Home care is less expensive than hospital or other institutional care. Plus, it enables medically complex children and adults to remain at home amongst their loved ones. But because the State of South Carolina has not increased reimbursement rates for skilled nursing home care services since 2008, families are finding it increasingly harder to access the skilled, high quality care that they need to stay as independent as possible in their communities.
State funding for home care has not been increased in more than a decade. At the same time, hospitals and other facilities have been steadily able to increase wages. Even more so, nurses can make more in home care in surrounding states. Now, home care providers find that they can compete for less than a quarter of all the nurses available in South Carolina. When agencies face such recruitment and retention struggles, home care recipients and their families suffer.
When there are less home care nurses available, families find that they experience missed shifts, which can not only create undue stress and chaos as loved ones must miss work, lose out on sleep, and forego other necessary activities—but it also puts the client in danger. For those who need skilled nursing care, missed shifts can mean dangerous consequences, including trips to the ER and unnecessary hospitalizations.
Even more so, many major home care providers have already left South Carolina because of the low funding for home care. Stagnant rates that are more than a decade old make keeping their doors open unsustainable. As more and more agencies leave the state, the harder it is for families to access care. Simply put, if the State does not take action to increase funding for home care, South Carolina’s most medically complex and vulnerable families will have few options for care.
South Carolina’s concerned families are making their voices heard: They are reaching out to their legislators and media to share their message: Increase funding for home health care so that families can access the high quality, reliable care that they need to be where they want to be: At home.
What is it important to continue hosting home visits in South Carolina from an Ambassador and Lawmaker Perspective?
USP CSM Kelsey Harris stated, “It’s important that service offices get involved in advocacy on behalf of our field staff and clients because supporting them in any way we can is at the center of what we do! I appreciate GAO’s continued efforts to raise awareness and rally troops around supporting homecare in South Carolina. We at USP can’t wait to meet many more legislators and government officials in our territory!”
Ali Genthner, Regional Director for WOW added, “The COA office continues to rave about how successful and impactful our home visit was from an office perspective, but also from a client, caregiver and lawmaker perspective. They are already planning who they want to go see next. Thank you to GAO for supporting our offices through the process.”
Representative Chip Huggins asked, “Are you planning to do home visits throughout the state of South Carolina? I would highly recommend doing so. Lawmakers need to hear and see the day in the life of a homebound patient. This has been very impactful, and I thoroughly enjoyed meeting Alexis and her family.”
Representative Richie Yow added, “Spending time with the family puts a different perspective on any situation. Its past time that we in South Carolina hold insurance companies accountable and do what we can do to ensure that families wanting to take care of their loved ones at home have the necessary equipment and support that they need to do so.”
GAO and four South Carolina service offices have been busy hosting lawmakers in home visits throughout the state. These visits show our state’s decision-makers the importance of home care, the impact it has on their constituents and all South Carolinians, and remind them to remember our stories and our clients when they vote on issues that affect the home care industry!
Upstate Pediatric Office (USP) Leads the Way for South Carolina Home Visits by Hosting Rep. Garry Smith in Pediatric Home Visit
The Upstate Pediatric Office (USP) led the way with South Carolina’s first home visit with Representative Garry Smith in Greenville. USP and Rep. Smith visited 20-month-old pediatric client Emma who had recently been discharged from her Medicaid waiver services. Luckily, after multiple hospitalizations that occurred during her discharge, she received reauthorization and was able to get her services back, which have since kept her healthy and out of the hospital. This home visit enabled Rep. Smith to see just how powerful and important these services are in keeping families together safely at home. Since his visit, South Carolina’s general assembly voted to increase the Children’s Personal Care reimbursement rate for Home Health Aide Waiver.
USP Client Services Manager Kelsey Harris, stated “It was so cool to have a legislator take time out of his schedule to see our processes in the office and how they lay the framework for the field employees and the care they provide. His investment of time in learning about our client and the difficulties the family faces is vital to the continued growth and success of homecare in South Carolina!”
Columbia Adult Nursing Office (COA) Hosts Impactful Visit with Representative Chip Huggins
The Columbia Adult Nursing Office (COA) recently hosted South Carolina’s second home visit with Representative Chip Huggins. GAO joined COA staff and the representative in a visit to client Alexis A., a 20-year-old anoxic brain injury client, and her parents in their Chapin home.
Alexis’s mother shared with Rep. Huggins the challenges she has had with the process of getting in-home care for her daughter. She stated, “This has been the most difficult process. I get many different answers and constantly get pushed around from one person to the next. I feel it would be in the state’s best interest to streamline the process for families like ours who don’t have the time to make multiple calls a day. I take care of Alexis 90 hours a week–at times I don’t even sleep because of her skilled needs. I don’t just advocate for higher rates for Alexis, but for our nursing teams, and for parents that experience a similar situation now or in the future.”
Impacted by his visit, Rep. Huggins stated, “I will do whatever I can to assist you and Alexis. That is what I’m here for.” Since the visit GAO has set up a meeting for August 14, 2018 to discuss the opportunities to improve the state’s home care waivers.
Upstate Adult Nursing Office (USC) Visits Vent Waiver Client with Senator Tom Corbin
The Upstate Adult Nursing Office (USC) hosted the third legislative home visit in Spartanburg. This visit was especially unique as Senator Tom Corbin and BAYADA adult nursing client Jeffrey B. bonded over several mutual connections. Senator Corbin attends church with a family Jeffrey had previously worked with. Additionally, they both also have a love for the Clemson Tigers and enjoy stories about the history of their community. Senator Corbin spoke with Jeffrey’s wife, Vonda Kay, about her challenges receiving home care services for Jeffrey. Vonda Kay explained how she cares for her husband 129 hours a week because he receives a limited 39 hours of private duty nursing.
She also shared with Senator Corbin the difficultly of obtaining reliable care—of the list of 15 providers that Jeffrey’s case manager gave her, BAYADA was the only agency that called her back. Senator Corbin, who has a son with autism, understands the struggles our families go through due to the low reimbursement. He stated, “Wow, when do you get rest? I understand home care is a cost savings to the state, and I’m willing to do whatever I can to support you and Jeffrey. I’m shocked at how much you have had to go through. I know we can work together to make some changes.”
GAO is planning to meet with Senator Corbin at the end of August to discuss further opportunities to assist our Vent Waiver clients.
Rock Hill Skilled Nursing Office (ROC) Host Home Visit with Representative Richard Yow
Our Rock Hill Skilled Nursing team (ROC) recently hosted Representative Richard Yow in a home visit with client Mitchell H. Mitchell is a 29-year-old who was in an automobile accident at the age of 23. At the time of the accident he had a 4- year old son. His son, Allen–now age 10–is a vibrant and active young boy who is very hands-on with his dad’s care. Having home care for Mitchell is not only important for his health, but also enables him to see his son grow up. Mitchell’s mom, who is his primary caregiver and biggest advocate, states, “Allen is Mitchell’s only motivation to keep moving forward. He wants to see his son grow, attend sports events, and just be there for him. Without Allen and being able to see him daily, he wouldn’t be with us today.”
Rep. Yow also shared stories of his own personal challenges he has with working with resources in the state. His father was in an automobile accident as well a few years ago, and the family continues to fight for his healthcare needs. Rep. Yow stated, “I know how challenging and stressful it can be. I also know I will do whatever I can to help you and Mitchell.”
Home visits like these really give elected officials a better understanding of how their decisions on key issues like Medicaid impact South Carolinians 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.
BAYADA’s Government Affairs Office (GAO) is excited to announce its expansion into Georgia! BAYADA’s current footprint in Georgia includes two pediatric offices and one adult office, which employ 253 field staff and 28 office employees, and care for 131 clients combined. Expansion into the Peach State means that GAO can begin directly lobbying state lawmakers for better home care policies and reimbursement rates, and can begin to directly involve Georgia staff, clients, and families in advocacy efforts.
BAYADA had its first advisory council meeting with Georgia leadership on July 24th to discuss the issues that Georgia’s service office regularly face and how GAO can best support their needs. The advisory council is chaired by Chief Government Affairs Officer Dave Totaro and comprises of BAYADA leadership in the state, GAO Director for South Carolina and Georgia, Melissa Allman, and Area Director Lee Dobson. The advisory council meets regularly to determine legislative priorities, discuss progress towards our goals, and determine next steps.
Dahlia Division Director Tammie Craddock stated, “We are so excited to have the support of GAO so we can finally be the advocates that the adult nursing population in Georgia deserves! We know that the choices are limited for clients who age out of the Georgia Pediatric Program, but the need still exists. We are hopeful with the help of GAO we can generate a greater impact on lawmakers and assist families by providing more options for in home care after the age of 21.”
Be sure to check out GAO’s biweekly Heartbeat to see new updates on our progress in Georgia!
Thank you to all our Advisory Council Members for your input and participation! We are excited to work towards better rates and policies on behalf of all Georgia’s staff and clients!
Meet the Keislers! Brandon and Haley are just like many parents—they value quality time together, they care about who is around their children and how they are learning, and their sons are their number one priority. But one thing sets the Keislers apart from most families: Their sons both have Pelizaeus-Merzbacher’s disease (PMD), and they rely on home care to keep Maxwell and and Matthew safe and comfortable, together at home as one family. But the shortage of home health workers has affected the Keislers and their sons’ care over the past six years.
The Keisler sons are able to stay at home because they qualify for in-home services through South Carolina’s Medicaid waiver programs. They are wheelchair-bound, unable to stand, sit, or walk on their own, and they must be fed, clothed, and bathed by a capable adult. Their personal care aides help them with activities of daily living (ADLs) such as bathing, toileting, and dressing.
“Home care enables our family to stay together, and enables us all to maintain normal lives despite our unique conditions,” said father Brandon. “Without our aides, we would not be able to work outside of the home to provide for our sons, and we certainly would not be given the flexibility to be able to go grocery shopping, take them to their doctor’s appointments, or maintain a normal sleep schedule. These kids are incredible, and the least they deserve is to grow up at home as a family like other kids.”
Max and Matthew’s mom, Haley, points to pitfalls that the home care industry faces. “If an aide calls out, that means one of us has to call out from work that day. There aren’t enough quality aides to keep up with the demand,” she said. “Although Max and Matt have physical limitations, mentally they are normal like you and me. They need to be stimulated so that they can continue to learn and grow. We need aides who are truly compassinate and caring. But it’s hard to find quality aides because they are constantly leaving to go to better paying jobs. In the past six years, many of our caregivers have left, and this creates a revolving door for our family and leaves gaps in our coverage.”
Brandon and Haley have experienced multiple agencies discharging their sons from services due to lack of staff. “We are finding it more difficult to find home care agencies that provide personal care services to the pediatric population. From what we have been told, it’s mostly due to the state’s low reimbursement rates,” explained Brandon.
The issues lies in South Carolina’s current reimbursement rate for Medicaid personal care services. The state reimburseses providers for their home care services, and that reimbursement rate must cover aides’ wages, training, supplies, and other overhead costs. Though the bulk of the reimbursement rate goes directly to the aide’s wage, it is not enough to compete with fast food and retail settings, where their starting minimum wages often vastly exceed reimbursement rates. If more and more aides continue to leave the profession, South Carolinians and others like the Keislers throughout the country will not have access to the in-home care that keeps their family together and keeps their sons out of institutional settings.
“Currently, we have a great personal care aide who loves what she does, loves our boys, and rarely calls out. When we leave the house, we know the boys are in good hands, and that allows me to be able to focus at my job. We know she does it for all the right reasons, but also needs to pay her mortgage and care for her family. We are hopeful our lawmakers can see the benefits of having personal care aides in the home. We feel she deserves to make a million dollars! Although we know that is not realistic, we need help from our legislators to keep her in our home. An increase in the reimbursement rate for personal care services will allow her and many others to do what she loves to do–care for our boys when we are not there to be able to,” said Haley as Brandon nodded in agreement.
This issue is so important for the Keislers because they know their sons will need personal care services throughout their lives, and they have even begun advocating for their issues. They recently joined the South Carolina Home Care & Hospice Association at their annual Legislative Day and brought Maxwell and Matthew along to their meetings with Representatives Jimmy Bales, Terry Alexander, and Roger Kirby. When asked if he had a message for legislators, Brandon said, “What a special day for all of us! We truly thank you all for what you do. We know being a lawmaker is also not the easiest job, but supporting South Carolina’s personal care aides and supporting home care truly makes a huge different in our and many others lives.”
To support home care and prioritize it over institutional care, legislators in South Carolina and in other states can support a Medicaid reimbursement rate increase for personal care and skilled nursing in-home services. Increased rates allow providers to pay caregivers higher wages, which enables them to recruit and retain more quality caregivers and prevent workers from leaving the profession for retail and fast food settings. This in turn will allow more individuals and families to access home health care and remain in their homes and communities.
To learn more about how home care, how it benefits your constituents, and how providers struggle to recruit and retain quality caregivers due to low reimbursement rates, please email firstname.lastname@example.org
What counts as advocacy? Advocacy is any message, big or small, delivered to state or federal decision makers to express the importance of home care.
This means that as an employee, you could advocate by sending an email or a letter to a legislator, sharing a story about home care on social media, attending your state’s lobby day, or helping a client advocate.
We have seen many times over how these messages add up to bring positive change to our staff’s and clients’ lives. During this year’s Ambassador of the Year Awards, US Senator Debbie Stabenow talked to attendees about how our email campaign in which BAYADA employees sent over 138,000 messages to our federal legislators, stopped Congress’s attempt to cut Medicaid funding. All of your advocacy activities add to our collective message that home care is important and should be prioritized when the government makes public policy decisions.
Don’t be afraid to share your voice to make positive changes for a better and stronger home care industry. To learn more about how you can be involved in advocacy and be part of that 20 percent, please contact me, Rick Hynick, at email@example.com.
Jen Collier with her local congressman, US Representative Ralph Norman
Hearts for Home Care Ambassador Jen Collier, Transitional Care Manager for the Charlotte Visits (CV) office, recently traveled to Washington, D.C. to join other families on Capitol Hill to advocate for her father and the many other individuals across the United States that receive charitable assistance. Jen’s father was diagnosed with a rare form of Leukemia for which there are only two medications that can effectively treat the illness.
Jen’s father failed the trial for one of the medications, so he must take the second medication, which exceeds $23,000 per month in out-of-pocket costs. When he was diagnosed, he owned his own business, but when he lost his business, he lost his insurance. Working as a new nurse in an emergency department in Gastonia, NC, Jen found herself having to learn how to get him the necessary care as an uninsured client. She spent most of her time calling oncologists and begging them to take her father as their patient with no insurance. She also had to find out how to pay for this medication and the 24 others he needed for his other chronic health conditions.
Patient Services, Inc. (PSI) is a charitable organization that helped Jen navigate this complicated process and assisted with the out-of-pocket costs for his medication. Once he passed the waiting period for disability and got Medicare, his out-of-pocket responsibility still cost him $7,000 per month, even with his supplement. PSI continued to assist Jen and her father with these monthly payments.
Last year, Jen received notification that her father’s financial assistance was in jeopardy due to federal efforts to cut charitable contributions. PSI selected Jen to help them lobby Congress in support of H.R. 3976, which, if passed, would add PSI and other similar companies to the list of those exempt from this law. During her day on Capitol Hill, Jen met with over 10 representatives and their staff to gain support for this bill, which affects not only her father, but many of the patients she works with every day as a transitional care manager.
Jen said “It was a huge honor to be selected by PSI to help gain support for this bill. PSI is a wonderful organization and I don’t know where my father would be without their assistance. My director put me right in touch with GAO, and everyone has been so encouraging. I am so thankful to work for a company that was able to give me the necessary training and support as I navigated this complicated process for the first time. I am passionate about being an advocate every day for my patients because of what I have been through with my father.”
Nicole Lugo (center) poses with her Hearts for Home Care Ambassador of the Year Award alongside GAO Director Melissa Allman (left) and Chief Government Affairs Officer Dave Totaro (right).
Nicole Lugo, Director of the Coastal Carolina Pediatrics (CCP) office, and her mother, Emily Lugo, recently joined GAO and other state Ambassador of the Year winners in Washington, DC as South Carolina’s first Hearts for Home Care Ambassador of the Year. Nicole was given this honor due to her instrumental role in securing a policy change for the Medically Complex Children’s Waiver by presenting BAYADA’s “Intro to Pediatrics” program to the Department of Health and Environmental Services.
Nicole’s enthusiasm and passion for advocacy continue to shine on a daily basis. Thank You Nicole, for all you do on behalf of your staff and clients!
On March 15, GAO hosted our annual Hearts for Home Care Ambassador training for new and current ambassadors at BAYADA’s North Carolina Learning Center. The day began with our Key Action of the Week discussion and followed with a day of learning, client experience, and panel discussions with legislators and campaign managers. Our ambassadors felt the day was energetic and inspiring, and they especially enjoyed the client stories and legislative perspectives. Below, please find quotes from two of the day’s attendees:
Christian Sheets, Client Services Manager in the Coastal Carolina Pediatric and Adult Nursing Office stated:
“The most helpful part of Ambassador training was just the amount of comfortability I felt after attending. Simply discussing the need for advocacy with my peers made me realize that it will be easy to be passionate about our issues in legislative settings. “
Amy Ramey, Director in the Rock Hill Assistive Care Office added:
“My perspective is that the Ambassador Trainings get better each year. I especially enjoyed Ron Ross and the dynamic session he provided. I am thrilled that there seem to be more and more people interested in advocacy and that our group is growing!
If I could change anything it would be to not call it “training.” I think some thought it would be the same as last year and didn’t see a need to attend. However, I learned so much that we didn’t cover last year. Overall, the experience was excellent. I’m looking forward to next year!”
It’s OK if you missed training! If you’d like to find out more about becoming a Hearts for Home Care Ambassador, emailMike Sokoloski.