Indiana moms are coming out to share their message with State decisionmakers: “Help us access the nursing care we need!” Recently, RTV6—Indianapolis’s ABC affiliate—aired coverage of mom Annie and her daughter Emma. Emma, and more than 14,000 like her across the state, rely on skilled nursing to live safely at home, but often struggle to access it. The State has until June 30 to make a decision to help alleviate families’ struggles by increasing funding for state programs that pay for in-home nursing coverage.
The issue lies in State funding for programs that allow families like the Goellers to access the skilled in-home nursing they need. Because nurses can make more money in hospitals, rehab centers, and other facilities, nurses are more attracted to those settings rather than home care. The constant turnover creates a revolving door of nurses. In the past six years, Emma, who has cerebral palsy, has had dozens of different nurses. “I would say probably at least 20 or 25,” said mom Annie.
Such turnover means that Emma doesn’t see reliable, consistent nursing coverage, which puts her at risk. For many families, this also means that shifts are missed and parents must bear the burden of providing care. Lack of sleep, calling out of work, and being unable to care for other family members are all unintended consequences that come from the lack of skilled in-home nurses.
No child deserves to grow up in a hospital or facility, and no parent deserves to be an untrained nurse for their child. When we unite our voices in advocacy, we can make sure that our message is heard and that decision-makers and key influencers are aware of the issues that they have the power to make changes on. Contact email@example.com to learn about how you can share your story and make an impact today.
Recently, a Delaware pediatric licensed practical nurse (LPN), Charlene Chappell, signed up for Hearts for Home Care and wanted to get involved. And did she come out in full force!
After sharing powerful and heartfelt testimony in Dover, DE’s Legislative Hall about the impact she makes on families and the challenges low Medicaid rates bring to nurses who want to provide one-on-one care to families at home, Charlene listened to a radio show where host Joel Olsteen spoke about “an itch you just can’t scratch.”
That got Charlene thinking about more advocacy. Charlene said, “I feel that the majority of men and women that serve as elected officials have no clue what’s required of a family when they have a child that has special needs and is differently abled! They don’t understand that nurses need to be attracted to home care so that families can rely on this care to keep their medically-complex children at home.”
That inspired her to write the below story and send it to all Delaware legislators. Read Charlene’s powerful story below!
I have an itch! Mo matter how hard I try to let someone know, I can’t. I’m 8 years old and I can’t tell Mommy where I itch! I can’t reach my itch! Its 2:30 in the morning and Mommy has fallen asleep in the chair next to my bed because she had to work today and then take my sister to her dance lesson. When she finally arrived home she threw some dirty laundry in the washer, and cooked dinner. After dinner she put the wash in the dryer, and then she loaded the dishwasher. She came in my room to check on me and feed me. Off she went to make sure my sister had done her homework and was in the shower. Oh no, an alarm is going off! Here comes Mommy. I wish I could tell her how much I love her for all she does and about my itch. She looks so tired. It’s almost 8:00 pm. The phone is ringing. Hurry Mommy before they hang up!
I can hear Mommy on the phone. “What! Oh no, please tell me it’s not true. I’m so tired tonight. I don’t know if I can stay up all night with him but I must. I have to make sure he’s ok on his ventilator and his medications are given at the right time, so he doesn’t have a seizure, and that the tube feeding is running properly. He has to be repositioned every two hours so his skin doesn’t break down. I have to check his diaper too. Well… thanks for the phone call.”
Oh no. Mommy just found out my favorite night nurse called out tonight, and the rest of forever. The agency is going to try and find a replacement as soon as possible, but that may take some time. Nurses aren’t as anxious to get into home health care nursing because they can make more money at a hospital. Mommy is going to miss work because she will have to stay up with me as Daddy’s gone from home with his job right now. Mommy may lose her job. I’m so sad my nurse left. She really knew me and she knew when I had an itch. She would gently scratch me all over till she found it, like Mommy does. She understands my cues and my facial expressions as I can’t talk, or walk, or move because of my illness.
I heard Mommy talking to the lady at the agency about the nursing shortage in home health care. She told Mommy that the money provided for reimbursement by Medicaid, not Medicare, has not increased in 13 years! The last time there was an increase in Medicaid was in 2006! I wasn’t even born then! She also told Mommy that the companies are running out of their own funds to supply the raises the nurses deserve. God bless the nurses that do work in home health care, for a lesser wage then they deserve, and take care of not only me but my mommy and Daddy too. Without them my Mommy and Daddy would not get the proper rest, would have to quit work to care for me. It would not be a good thing for my family. We would all suffer. I don’t want to go anywhere but here in my room. What if we can’t find a new night nurse? Where will I go? I overheard the doctors and nurses at the hospital talking last time I was admitted for a bad seizure and they said that all children do better in the home setting for getting well once they can leave the hospital. They are less likely to get sick again from a disease they acquired while in the hospital, and all of us are more comfortable in our own bed!
I hope my story has helped you to understand why we need to increase the Medicaid budget. Not Medicare, but Medicaid. Mommy told me that some people get confused so that’s why I will say it one more time. Please increase the Medicaid funding for home health care nurses.
Thank you for reading this. Mommy thanks you as well as all the other children and their parents that require specialized home health care nursing. And yes, Mommy found my itch!
Thank you, Charlene, for sharing your creative and passionate story with Delaware’s legislators. We must all share our voice to make an impact, and your advocacy highlights your deep commitment to your clients’ care.
Hearts for Home Care is seeking to advocate for higher reimbursement rates for skilled nursing services in Delaware so that nurses can be better attracted to home care, and so families that need this care to stay together at home can more easily and reliably access it. For information on how you can get involved, contact us today!
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!
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 firstname.lastname@example.org to find out how you can get involved in advocacy today!
We know the struggles families can face with home care: The call-outs and missed shifts, the lack of sleep, the caregivers who are like family but can’t afford to make their own ends meet, and the frustration that comes when you or your loved one can’t access the care that is deemed medically necessary. We also know the value and impact that sharing our voices has.
Recently, home care advocates have made the news for their efforts across the country. Specifically, on December 28, the Washington Post covered the impact that providers and parents are having in driving public awareness of the struggles that Marylanders and Virginians are having in accessing the skilled nursing home care their families need.
Washington Post reporter Tara Bahrampour points to low reimbursement rates in both states as the major issue contributing to families’ struggles—
“The reason lies in a stark state-by-state discrepancy in the pay in-home nurses receive through Medicaid. Maryland and Virginia have set reimbursement rates significantly lower than surrounding jurisdictions…As a result, licensed practical nurses [LPNs] are finding more lucrative positions out of state or at hospitals or other care institutions that pay more, leaving many homebound Medicaid patients without services.”
Hearts for Home Care has been leading the charge in Maryland, where a coalition of home care clients, parents, providers, and other advocates are pushing for a 25 percent increase for skilled home nursing services. Advocates say that this increase—half of which would have to come from state coffers—would serve to alleviate families’ inability to access care an average of 17 percent of the time, as reported by the state’s Department of Health. Hearts for Home Care advocate and BAYADA Home Health Care director Shannon Gahs says:
“Maryland is failing its citizens who have significant medical disabilities. Failing to provide care 17 percent of the time not only creates a dangerous situation for the person who relies on that care—it harms his or her family. Parents are calling out of work and losing the sleep they need to stay healthy to support their family. They’re doing everything they can to keep their family members safe, but this is not how it is supposed to be. We have to do better.”
In comparison, neighboring Delaware found that shifts are missed 7 percent of the time. There, the state reimburses providers at a rate approximately 30 percent higher for LPN home care services.
In California, Governor Jerry Brown recently proposed a whopping 50 percent wage increase for home care nurses—a move that advocates have pushed for over the past several years. As with families across the country, Californians who require skilled nursing home care have been struggling to get nursing care for their loved ones. Advocates report that under Medi-Cal—the state’s health care system for low income and disabled Californians—rates have not been addressed in 18 years.
While both the Maryland and California proposals are still pending, home care advocates have been successful in driving public and legislative awareness of low reimbursement rates and the impact on families’ access across the country in recent years. Most recently, the home care industry has seen reimbursement rate increases in Rhode Island, Massachusetts, South Carolina, and New Jersey among other states. It starts with educating legislators through advocacy via any number of channels: Traditional and social media, letters, phone calls, meetings, and more.
While advocacy can seem like an intimidating activity to many who do not yet engage in it, it’s important that we share our advocacy wins with the home care and health care community at-large. As illustrated in recent news, when we band together to leverage our voices in unison, big changes can happen. It’s important to take that first step and make your message heard on behalf of the millions of Americans that rely on home care.
Thank you to our newest Hearts for Home Care Ambassadors, CSM Beth Schenck and Director Courtney Donald, for your coordination of an impactful legislative roundtable and office tour with Representative Julie Casimiro (D-North Kingstown, Exeter)! An additional thanks to Clinical Educator Cristina Gomes, Associate Sabrina Soares, and the RIS, RSP, and RAC offices!
After greeting everyone in the office, Rep. Casimiro walked through all of the BAYADA Rhode Island offices with a sense of curiosity and helpfulness. She asked about the services we provide, where our clients and employees are located, and the challenges we face.
Cristina Gomes took Rep. Casimiro into the Rhode Island Skilled Pediatric SIM Lab to demonstrate the sophisticated training we offer and how we use it to support our nurses and clients in the home. Cristina explained each piece of equipment and provided scenarios where she has been able to successfully use the lab, as well as virtual and in-home training to advance nurses, skills to care for medically complex children outside of a facility of hospital setting. She explained how we reevaluate each nurses skills annually and provide ongoing support as needed to make sure our nurses are confident, competent and prepared for any emergency.
We stood in front of the large white board with all of our open shifts, while she skimmed the cities and noticed there were in fact several pediatric clients in her District who are not currently receiving all of the PDN nursing services they are authorized for. She was determined to find out why this is happening and how she can help everyone on that board. The office staff explained that because the reimbursement rates for Medicaid mean that nurses pay rates at home are significantly lower than what they can earn in a hospital or facility. Even Massachusetts rates are approximately 40 percent higher than in RI, so our state’s nurses are traveling across state lines to care for people in other states instead of staying her to care for our vulnerable Rhode Islanders. It was clear that Rep. Casimiro completely understood the issue while we walked away from the board, towards the SIM Lab – she was shaking her head and said “How can I help? I want to help fix this”
Rep. Casimiro not only asked detailed and thoughtful questions about home care nursing and CNA services, but committed to a home visit with a pediatric client. She even offered her assistance with any legislation we propose this session to help ensure Rhode Islanders get the home care they need!
Thank you, Rep. Casimiro for being a friend of home care! For information about how you can get involved in advocacy on behalf of your staff and clients, contact me today!
This quarter, Hearts for Home Care (H4HC) Ambassador and Pocono Hospice Director Thomas Johnson-Medland represented BAYADA at a press conference with Senator Lisa Baker and Attorney General Josh Shapiro as they celebrated the passing of legislation which will protect Pennsylvanians by allowing hospice professionals to dispose of prescription drugs after a loved one dies.
Throughout the legislative process, Thomas and other BAYADA advocates vocally supported Senator Baker’s bill and were active in ensuring it reached the finish line on behalf of all of our staff, clients, and their families.
Thank you Tom for being such a great representation of the home care industry!
Below, Please see HPI Recruiter Associate’s take on why she decided to take her advocacy to the next step by becoming a Hearts for Home Care Ambassador.
“I wanted to become a Hearts for Home Care Ambassador so that I can advocate for families so that they in turn can enjoy peace and comfort in their home, and so they can hopefully live as normal of a life as possible.
I have worked in the health care field for over 12 years, and specifically as a Certified Nursing Assistance within hospice for seven years. I was able to see first hand while working with my clients in the nursing home the importance of caring for clients in general. The clients all had one thing in common: “They wanted to go home.” There is a lot of turnover in health care, and it was sad to see when some of the residents were not getting the proper care they should have been getting. I can say it was hard to watch at certain times.
It wasn’t until I started working for BAYADA Home Health Care that I was able to experience so much more opportunity to impact clients’ lives on a daily basis, particularly through advocacy. Working at BAYADA has opened up my eyes to lawmakers’ roles in home health care, and the importance of employees advocating for their clients. We are their voice and we must stand up for them!
I enjoy talking to legislators and pushing for home care in all ways possible. It is an experience that I not only appreciate, but truly enjoy doing. I attended my first Advocacy Day in May of 2018 and it wonderful experience. It was great to see how everyone came together for the same cause. I appreciate all of the support from our Government Affairs Office (GAO) and I look forward to continuing to advocate for our clients with BAYADA.”
Previously known as annual statewide “Ambassador Training,” this past year the Government Affairs Office’s (GAO) Grassroots Advocacy Team has worked hard to revamp the yearly program to make it more interactive and more engaging for both new and seasoned Ambassadors. Whether or not you’ve attended in the past, be sure to check out what being an Ambassador is all about during our upcoming symposiums!
Throughout the year we will be offering symposiums in Pennsauken, New Jersey; Harrisburg, Pennsylvania, North Carolina, New York, Georgia, South Carolina, and Rhode Island through the first half of the year. Contact me for more information and see below for dates. During these symposiums, new Ambassadors will learn about advocacy and what sharing their voice means, while the whole group will be trained on more concrete utilization tools to take their advocacy interactions to the next level! This year’s components and activities have been designed with your feedback in mind, and we are excited to show you what we have planned to allow you to be more confident and effective in your advocacy efforts.
Our Ambassador program serves as our “grasstops” program: Ambassadors commit to serving as their office’s liaison to government affairs activities and to educating their local elected officials and advocating for better policies on behalf of their office’s staff and clients. For example, check out what PA Ambassador and SEL Associate Christine Detweiler recently accomplished through her Ambassadorship. We have previously requested that each service office commit to having one Ambassador on staff, so if you’re office doesn’t have one (or even if it does!) please sign up to get more engaged with BAYADA, our clients, and your local electeds.
In addition to revamping the annual symposium, the grassroots team has been working on making sure ambassadors stay engaged and understand their importance in being a voice for home care throughout the year. Over the past 12 months, the Grassroots team has provided veteran ambassadors with monthly continuing education opportunities via 30-minute Zoom trainings to keep them abreast of new and existing advocacy tools and “tricks of the trade.” Because of the added engagement and positive feedback we’ve received, the GAO team is committed to keeping this practice ongoing throughout 2019.
For more information about the Ambassador programs, the annual symposiums, or home care advocacy in general, contact me today!
2019 Ambassador Symposium Schedule
SC – 2/20 at the state capitol in Columbia
GA – 2/21 at the state capitol in Atlanta
PA – 2/28 site TBD in Harrisburg
NJ – 3/13 at the New Jersey Learning Center in Pennsauken
NC – 3/28 at the North Carolina Learning Center in Charlotte
Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!
Pennsylvania Hearts for Home Care Ambassador Christine Detweiler has always been a diligent advocate, but recently, her efforts have proven that home care employees can truly go beyond the call of duty for clients and staff by serving as their voices in our state capitals.
“Home care is important to so many Pennsylvanians, and many aren’t as readily able to meet with legislators to share their stories,” said Christine. “I see advocacy as an extension of why I do what I do as a home care employee: We need to make sure we get out there to be a voice for those who don’t have one!”
Christine has been progressively adding more interactions to her advocacy portfolio—Over the past year-and-a-half she focused on meeting legislators in their district offices, and in the past few months she has hosted multiple home visits. Home visits are the most impactful way to demonstrate the importance of home care to legislators because it gives them a chance to see firsthand how clients receive services. To say Christine’s home visit resonated with Pennsylvania state Representative Marguerite Quinn is an understatement.
A few months ago, Christine led the representative on a home visit with five-year old client Gideon M. who suffers from Spinal Muscular Atrophy (SMA). His mother shared their heartwarming story and opened up about their family’s challenges and Gideon’s ever-growing needs. Her story impacted the representative so deeply that shortly after the visit, Rep. Quinn emailed Christine to further assess the family’s needs and determine how she could help them obtain a transportation cart that would make Gideon’s care easier. The outreach didn’t stop there.
Rep. Quinn recently reported to Christine that she has arranged for a builder to come into the family’s home to build custom doors to create a private area for Gideon downstairs. She also reported that she contacted a rotary to find out if the family can be provided with a generator so that they do not need to constantly worry about their home’s power going out. It is truly remarkable how Christine’s efforts have impacted her client and his care.
In addition to her efforts for Gideon’s family, Rep. Quinn introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. After introducing this legislation, Rep. Quinn encouraged the state Newborn Screening Advisory Board to support the measure. As a result of her continued efforts, this past month Secretary of Health Dr. Rachel Levine signed the recommendation.
The Hearts for Home Care Team can’t be prouder of the impact that Christine has made! Her passion and tenacity has reached the hearts of many legislators, and she is truly making a name for herself in Harrisburg as a tireless advocate!