We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.
Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.
To All I Work with in NC DHHS and Medicaid,
Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.
These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.
The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.
Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.
To my old and new friends in DHHS and Medicaid, I appreciate you always having my back. Also, my sincere gratitude to Saunja Wilson for catching a “Near-Miss” that would have been just as deadly to me as a medication overdose.
All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime! My best wishes in the coming year and Happy Holidays!
Ari A. Charlotte, NC
On March 28, our annual North Carolina Hearts for Home Care Ambassador Symposium took place, where we provided tools and resources to our volunteer Ambassadors. The training focused on a variety of topics, including leading a legislative meeting and building relationships with lawmakers.
In addition to special guests former Representative Bill Brawley, Senior Healthcare Campaign Director of MomsRising Felicia Burnett, Association for Home & Hospice Care’s VP of Government Affairs Tracy Colvard, and Staff Attorney with Charlotte Center for Legal Advocacy Louise Pocock, the shining star of the Symposium was client Dimpal, who inspired all of our Ambassadors with her story of her journey into advocacy.
Beyond detailing the specific challenges she and her family face as a result of low state Medicaid reimbursement rates, Dimpal also described the ways in which home care and her nurses have changed her life and granted her independence:
“Without my nurses, I wouldn’t have been able to go to college and to live a full life. Without them, I’d likely be stuck in a hospital or a nursing home,” said Dimpal.
It was this gratitude for her nurses that propelled Dimpal to share her story and to advocate for others who rely on the state’s Private Duty Nursing (PDN) program to survive.
To hear more about Dimpal and the importance of advocacy, you can watch her full speech here. You can also read about her nursing care in the Gaston Gazette after a reporter came to her house to learn more about how her nurses impact her everyday life.
Special thanks to our Hearts for Home Care Ambassadors for volunteering their time and talents advocating for our staff and clients!
To learn about ways you can get involved in advocacy, email email@example.com today
ACSP Clients Jessie and Marie, and the impact their caregivers Indira and Marie make in their lives
GAO and many other advocates are fighting for increased funding for New Jersey’s Personal Care Assistant (PCA) program. This program enables thousands of vulnerable New Jersey residents stay at home, and we are hoping that our advocacy efforts lead to fairer wages for caregivers like Indira and Michele.
Indira & Jessie
Indira is at Jessie’s home every morning at 5:00 without fail. After taking on Jessie’s case and learning that she spent most of her time in bed, it became Indira’s mission to consistently challenge her to get out of bed and get active. Now, every morning before dawn, Jessie starts her morning with a smile, anxiously waiting for Indira to arrive.
While helping Jessie, who is 31 and diagnosed with cerebral palsy, with her activities of daily living, Indira also incorporates games, crafts, dancing, and singing. After a few short months with her beloved caregiver, Jessie now has a newfound confidence in her physical abilities and communication and language skills. Indira has quickly ingrained herself as part of Jessie’s family, whose loved ones call Indira “a Godsend.”
Marie & Michele
CHHA Michele has been with her client Marie since January of 2017, but you would think they have known each other forever. They share a special bond, and Marie even says that Michele is “like a daughter” to her. Marie lives alone, and if not for Michele’s visits, would be lonely and potential in danger. In addition to the personal care services that Michele provides to keep Marie safe and healthy, you see their bond shine when Michele frequently makes puzzles and quizzes to stimulate Marie’s mind—or as they like to call it, “using our noodles.”
Marie says that without Michele, she would not be fully able to take care of herself. But As soon as Marie arrives at Marie’s door, the time flies as Marie keeps her on her toes—both figuratively and literally. In addition to regularly stimulating Marie’s mind, Michele makes sure that Marie is safe and on balance as she moves around her apartment.
We need your help in supporting dedicated caregivers like Indira and Marie through advocacy. To find out ways you can get involved, email firstname.lastname@example.org today.
“Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” Two moms share how PDN impacts their families’ lives
This year, our major focus in New Jersey is to fight for higher reimbursement rates for New Jersey’s Private Duty Nursing (PDN) program. One of the most impactful ways to influence legislators is to engage clients and families into advocacy through testimony, which is delivered by these clients to legislators who are in key positions to influence legislators. Below, find powerful excerpts from two moms who support a PDN increase on behalf of their children and their families.
Dana I. – Mother to BAYADA Client, Abi
“There is truly no way to explain on how much caring for a medically fragile child impacts a family. Every errand, every event, every move of your day becomes centered around their care. Abi has been authorized for skilled nursing care by our insurance company, yet she still has five or more unfilled shifts every week.
Lapses in nursing coverage put tremendous pressure on our entire family—we often have to miss work and stay home to provide for her care, putting strain on the family finances. Lost nursing hours also means the entire focus of our time becomes all about our medically-fragile child, and the balance between the other children becomes strained and we often miss beloved activities or events.
Abi is not a child that we can just hire a babysitter for. Her high level of care and constant need for monitoring makes it impossible to have any sense of normalcy without capable & consistent nursing support. There are simply not enough nurses in home care to cover all of the needs of my family and the needs of many, many others.
Institutionalized care is not the answer. My precious daughter brings many challenges to our home, but it would be heartbreaking to have to put her in an institution for lack of nursing support. So here I am prayerfully putting a name and a face to those of you who have the power to make a real difference in this area. Competitive wages would bring stability to her home care nursing and allow our family and families like us to stay together and thrive.” -Dana Insley, Abi’s mom
Emma K. – Mother to BAYADA client, Lili
“While I count my blessings that we have the right nursing team in place, I often think of the families across the state that can’t fill their nursing shifts. It takes me back to the last time our scheduled nurse had a family emergency and there was no other nurse available to cover her shift. As a single mother of a medically-complex, ambulatory child with no family in the area, you can imagine how it plays out when there isn’t a nurse available for Lili: I have to call out of work myself and cancel any commitments I’ve made for the day. I can’t get the groceries that I was planning to pick up or even do a load of laundry since I can’t leave Lili alone for even a minute. And I have to again plan to do these things during the times I’m expecting to have a nurse to stay with Lili because I can’t get them done otherwise.
We as a society have developed a system of reliability for our communities: Teachers help children learn, police keep our streets safe, ER doctors save lives, and pharmacists fill our prescriptions. But we are failing in keeping home nursing readily available. Just as a prescription, Lili’s care is prescribed by her doctor and authorized by the state. But we cannot rely on its availability. I hope that our state decision makers prioritize home care, if solely for the fact that it keeps children like Liliana at home and keeps families together. Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” -Emma K., Liliana’s mom
Dana and Emma exemplify the power of sharing your story. If you’d like to highlight the powerful story of your experience in a home care office, or the story of a client, their loved one, or a caregiver, contact email@example.com.
BAYADA’s Government Affairs Office (GAO) is proud to join with fellow advocates like you to continue to advocate for better wages for our caregivers and increased access to home health care for the tens of thousands of New Jersey residents that rely on this care to stay safe and independent at home. Thank you to our many employees, clients, and families who have advocated on behalf of yourselves, your loved ones, your staff, and your clients regarding our two major 2019 issues:
1. Personal Care Assistant (PCA) Program – Increased Reimbursements for Increased HHA Wages
GAO is working in collaboration with other providers and the New Jersey Home Care and Hospice Association to educate our legislators on the importance of adequate funding for the Personal Care Assistant (PCA) program.This is especially important as the State recently mandated an increased minimum wage. BAYADA supports a wage increase for all of our home health aides (HHAs) for the incredible, lifechanging work they do—but additional advocacy is necessary so state legislators understand the importance of proportional PCA program funding so that providers like BAYADA can comply with the new mandate and stay sustainable.
Click here to check out how HHA Indira helps her client Jessie stay at home, and about CHHA Michele’s special bond with her client Marie. We are hopeful that our advocacy efforts can lead to a fairer wage for aides like Indira and Michele, as well as better recruitment and retention rates across the ACSP practice so that all New Jersey residents who need this important service can access it. To find out how you can get involved, email firstname.lastname@example.org today.
2. Private Duty Nursing (PDN) Program—Increased Reimbursements for Increased Nursing Wages
GAO is working with the New Jersey Home Care and Hospice Association to educate our legislators on the importance of adequate funding for the Private Duty Nursing (PDN) program. Current PDN program funding makes it difficult for providers like BAYADA to recruit and retain the nurses necessary to care for New Jersey’s most medically complex and residents. This difficulty results in significant access to care issues, as only 85% of scheduled hours are currently filled, and vulnerable New Jersians are going without the care they need to stay safe and healthy at home.
We are lucky to have home care supporters in the legislature who understand the struggles our caregivers and skilled nursing clients face—Recently, Bill S1733/A4575, which proposes a $10 per hour increase for RN and LPN home care services, was introduced. In addition to the increase, this bill also seeks to establish a “rate floor” so that managed Medicaid providers reimburse no less than the state fee-for-service rate for in-home skilled nursing services.
But we need your help in getting this bill to the finish line. Soon, this bill will be up for a hearing, and clients’ and employees’ testimony make the most impact in showing legislators the challenges that arise from inadequate funding and the associated access-to-care issues.
Click here to read excerpts from two clients’ testimonies regarding the importance of PDN in their lives. Powerful stories like the ones Dana and Emma share help our advocacy efforts and show legislators the impact of home care in making a real difference in vulnerable New Jersey residents’ lives. To find out how you can get involved, email email@example.com today.
Great things happen when we advocate together! After years of advocacy from BAYADA, our partners, and many parents and home care employees, the Maryland General Assembly recently passed two pieces of legislation that collectively will increase all Medicaid home and community-based services reimbursement rates by more than 30% over the next six years. Though initially met with opposition from Governor Larry Hogan, the Maryland General Assembly heard our voices and overwhelmingly voted to override his veto of one of the bills.
The first bill, the state’s annual budget, provides a rate increase of 3% that will go into effect July 1, 2019. The second bill, also effective July 1, 2019, contains an amendment which will increase reimbursement rates by 4% each year between July 1, 2020 and July 1, 2025.
Currently, Marylanders who rely on in-home nursing care have only 83% of their authorized hours filled, meaning that families struggle to fill their medically complex loved ones’ skilled home nursing care nearly 20% of the time! We have found that Medicaid rates have stagnated below the cost of living and below wages seen in other settings—such as hospitals and facilities—and surrounding states—and that families were struggling to fill these hours. We are hopeful that these access-to-care issues will be alleviated as providers will be able to recruit and retain nurses within the home care industry, and that more of Maryland’s most medically complex will be able to stay safe where they want to be—in their own homes.
This was a true team effort led by BAYADA and the Maryland National-Capital Area Home Care Association (MNCHA) and including MNCHA member providers, several individual families, parent advocacy organizations and disease-specific advocacy organizations. Special thanks to JoAnn Saxby, Patrick O’Malley, Eddie Dyer, Patty Watson, and Susan Ingalls who all played important parts in making this happen and to BAYADA Delaware employees Mandy Brady, Kristyn Kelsch, and Taylor Kosinski who went above and beyond to advocate in their sister state. Mike Sokoloski, Tara Montague, and Nicole Onofrio were instrumental in supporting two Town Halls and Legislative Day, and Alisa Fox coordinated timely articles in The Baltimore Sun, The Washington Post, and on WDVM TV in Western Maryland. Maggie Tracy managed countless logistical hurdles and supported direct lobbying and grassroots efforts.
Thank you to everyone who played a role in this major achievement! Advocacy cannot succeed if only one voice is heard, and your advocacy has contributed to the well-being of so many Marylanders in need of home care.
For more information on this increase, or how you can get involved in advocacy in Maryland, please contact Shannon Gahs at firstname.lastname@example.org.
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 email@example.com. Together, we can share our voices to make 2019 the best year for home care yet.
Lawmakers returned to Raleigh on January 9 for the 2019-2021 long legislative session. We expect to see some changes in committee assignments and leadership, especially in the House Appropriations for Health & Human Service (HHS), with the election defeat of Chairman Nelson Dollar.
Dollar–the former chairman of the House Appropriation Committee—has transitioned from the public sector to a senior policy advisor to the Speaker of the House Tim Moore. Dollar has been a home care champion for years and was named BAYADA’s Legislator of the Year in 2016 and 2018 for his efforts. He was instrumental in securing much needed Medicaid reimbursement rates increases for nursing and aide services. He has also been instrumental in protecting from elimination the Certificate of Need (CON) process for our Medicare offices. His expertise and knowledge on complex issues at the statehouse will serve North Carolina well. As you may recall, Dollar lost his seat by 884 votes last November to Democrat Julie von Haefen.
While we are sad to see our former Champion lose this leadership position, there are other home care Champions that we anticipate seeing in key roles. We expect to see Representatives Donny Lambeth and Josh Dobson as co-chairs of HHS. Further, we anticipate Senators Ralph Hise and Joyce Krawiec in chair positions serving the Finance and/or Health Committees. All four legislators are well-versed in home care and the challenges our clients and staff regularly face throughout North Carolina due to our collective advocacy efforts. This puts BAYADA in a great position to move forward with our next round of asks.
Our major reimbursement priority this session is to increase the Medicaid private duty nursing (PDN) rate from $39.60 to $45.00 over the course of two years. This increase is necessary to help us recruit and retain the high quality, compassionate nurses we need to care for the many North Carolinians that need skilled care to stay at home.
Sharing your voice is key to achieving our goals: Be sure to look for opportunities to advocate as we seek to support our clients and staff. Of note, please save the date and be sure to look out for communications regarding our Legislative Day, which will be held in Raleigh on May 1.
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 firstname.lastname@example.org.
On July 13, Assemblyman Troy Singleton and Senate Majority Leader Loretta Weinberg introduced legislation A5089/S3400 which increases the New Jersey private duty nursing rate under State Fee-For-Service Medicaid by $10 per hour for registered nurses and licensed practical nurses. The last rate increase for private duty nursing was in 2008. BAYADA has been working with the Home Care Association and other providers discussing the need for a rate increase as it is difficult to recruit and retain nurses. BAYADA did an internal study and found of the scheduled hours, only 72% of those hours were filled, leaving clients and families without care.