Delaware Hearts for Home Care Advocate Shares Heartfelt and Impactful Story with Legislators!

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!

My Itch!

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

Advocates in Action: Dimpal Patel Inspires NC Ambassadors at Ambassador Symposium

Client Dimpal P. inspires Ambassadors during North Carolina’s Ambassador Symposium

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 advocacy@bayada.com today

Ambassadors of the Year get Ready to Head to Washington, D.C. for Annual Awards Trip!

Ambassadors of the year in action! On May 9, each state winner will head to Washington D.C. and find out who this year’s overall winner is.

When the Government Affairs Office (GAO) launched the Hearts for Home Care Ambassador program nearly ten years ago, we envisioned that each service office would assign a designee who would essentially act as the GAO liaison for that office. How much we’ve grown! Today, our Ambassadors go above and beyond to be the voice for our staff and clients, and we are proud to reward them for their efforts!

Over the past year, the Ambassador program has grown tremendously, with nearly 80 more BAYADA office employees serving as Ambassadors than last year. Not only are these numbers a great indicator of growth, but our Ambassadors’ increased engagement shows how each one is truly a leader and innovator in their office, and in legislators’ offices around the country.

Each year, we choose an Ambassador of the Year from each GAO state, and each state winner joins GAO in a special recognition trip to Washington, D.C. The following Ambassadors went so far above and beyond in their advocacy efforts—whether it be through legislative visits, home visits, helping with testimony, or other creative ventures—that GAO chose them as their state’s Ambassador of the Year: Justin Booker (NY), Beth Schenck (RI), Lisa Minnella (NJ), Tom Johnson-Medland (PA), Victoria Carter (DE/MD), Trip Smithdeal (NC), Jenni Cairns (SC), and Doug McNew (GA). Additionally, each year GAO chooses a “Rookie Ambassador of the Year,” this year being Rebecca Gaughan of the Poppy Division.

All nine winners will attend the Ambassador of the Year Awards trip to Washington, DC, on May 9-10. During the trip, our guests will enjoy an overnight stay on Capitol Hill, a guided sightseeing tour, and a private awards dinner where we will announce the overall Ambassador of the Year winner! In addition to the trip, this year, GAO surprised each state winner “Publisher’s Clearing House-style” in person at their office in front of their peers. Our Ambassadors do so much to be the voice of our staff and clients, GAO is excited to take them on an exciting trip and make sure that they have a great time.

To learn about what each individual Ambassador did to win this prestigious title, click here for a summary or look back on previous Bulletin articles through March and April, where we highlighted their accomplishments and creative approaches to advocacy! The primary responsibility for the GAO Ambassadors is to develop and foster relationships with their legislators through district office meetings and home visits so that our state and federal decision makers understand what home care is and how it affects their constituents. 

Our Ambassador program continues to grow and reach new heights—and we are always open to more involvement! Our Ambassadors serve as the forefront of our advocacy program, and truly make the difference in educating local legislators about home care and its impact on clients and communities. If you are interested in learning more about the Ambassador program or how you can get involved, email msokoloski@bayada.com today!

GAO Jetsetters: Making the Rounds in Washington, D.C., Arizona, and Colorado

Left: GAO Ambassadors Anthony D’Alonzo and David Mead, and GAO Grassroots Senior Manager Mike Sokoloski in front of the US Capitol
Right Top: Senator Tom Carper (D-DE) poses with GAO Senior Associate Lindsey Wright and Chief Government Affairs Officer Dave Totaro
Right Bottom: Advocates, including GAO Director Shannon Gahs (second from right), join in NAHC’s March on Washington

BAYADA’s Government Affairs Office (GAO) staff members often say, “Advocacy never sleeps.” For the GAO federal affairs team—Government Affairs Officer Dave Totaro and Senior Associate Lindsey Wright—we can also say “Advocacy never stays put.” Over the past quarter, GAO has traveled to Washington, D.C. several times, as well as to Massachusetts, Florida, Indiana, Arizona, and Colorado—among other places.

Most often, GAO travels specifically to meet with legislators in D.C. and around the country to educate them about home care and the benefit it has in keeping millions of America’s seniors and individuals with disabilities independent and in their communities. Most recently, the federal affairs team has also taken to visiting BAYADA’s Home Health service offices to get employees involved in advocacy.

In late February, Dave and Lindsey traveled to D.C.’s Capitol Hill to meet with 11 key congressional members and their staff. On April 2, they traveled back to the Capitol along with two Hearts for Home Care Ambassadors—Anthony D’Alonzo (MHH) and David Mead (NLP)—and other GAO staff—to participate in the National Association for Home Care and Hospice’s (NAHC) annual March on Washington. This year, marchers were asked to educate legislators on two important bills: The Patient Driven Groupings Model bill, which if passed will eliminate reimbursement cuts based on behavioral assumptions, and the Home Health Improvement Planning Act, which if passed will allow non-physician practitioners to sign off on care plans. The visits were successful and resulted in additional cosponsors for both bills.  

GAO’s Dave Totaro and Lindsey Wright visited four Home Health service offices in Arizona and Colorado. Clockwise from top left: GAO and HH office staff in the SVV, FCV, GLF/VGL, and DNF/DNV offices.

The two-person federal affairs team can only make so much headway alone. GAO relies on advocates like you to make sure that all legislators hear our messages loud and clear. Dave and Lindsey have begun traveling to Home Health service offices around the country to tell employees what they can do to get themselves and their clients involved in advocacy, and the importance of doing so.

“As much as I travel to spread our message to our country’s decision makers, it’s important that I also use my time to get our staff involved. Home Health employees and clients are affected by what our legislators and regulators in D.C. make decisions on every day. The more our people mobilize and advocate, the more those decision makers will see how their choices affect real people’s lives,” said Dave Totaro.

During their trip to four Home Health service offices across Arizona and Colorado, Dave and Lindsey focused on Medicare policies, current bills, and how employees can get involved to make a difference. They also listened to each office’s unique challenges in delivering care to clients, and how policy changes could alleviate some of those issues. Thank you to the many BAYADA service offices that welcomed GAO with open arms and open minds, as well as to the employees who signed up to become Ambassadors. To learn about ways you, your staff, and your clients can advocate, contact Lindsey Wright at lwright@bayada.com. We look forward to working with you!

Pennsylvania Homecare Association (PHA) Legislative Day Pictures

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 advocacy@bayada.com to find out how you can get involved in advocacy today!

CLICK TO SEE PICTURES

2019: The Year of the Ambassador!

GAO continues to grow and strengthen our Ambassador program. Symposiums and other engagement activities are currently underway–don’t miss your chance to get involved!

US Senator Debbie Stabenow (D-MI) poses with Chief Government Affairs Officer Dave Totaro (center) and our Ambassadors of the Year at the 2018 Ambassador Awards trip in Washington, DC

When the Government Affairs Office (GAO) launched the Hearts for Home Care Ambassador program nearly ten years ago, we envisioned that each service office would have a designee who would essentially act as the GAO liaison for that office. How much we’ve grown! Today, our Ambassadors go above and beyond to be the voice for our staff and clients, and they truly exemplify the leadership and excellence qualities that have grown to be associated with the Ambassador program.

In 2018, GAO committed to a more robust and centralized grassroots program, including a stronger dedication to the Ambassador program. In 2019, under Grassroots Advocacy Manager Mike Sokoloski’s leadership, the program is set to have its strongest year yet. This year we will be sharing a new “Ambassador Dashboard” that will help our advocates stay engaged and track their progress, create more 30-minute advocacy Zoom trainings, and bring our top-performing advocates on an exclusive Ambassador Awards trip to Washington, DC in May!

Additionally, one of the most exciting changes we have underway is our newly-revamped state-by-state Ambassador Symposiums. Our Ambassador Symposiums are newly designed and structured to train rookie Ambassadors while simultaneously energizing more seasoned advocates. This year we are partnering with outside organizations and bringing in more legislative and client guest speakers to truly show attendees the impact that strong advocacy has in making meaningful changes for our staff and clients.

DE Senate Majority Leader Nicole Poore joined a recent Ambassador Symposium and shared her thoughts on the importance of advocacy with attendees

So far in 2019, we have held our first Ambassador Symposium in Newark, DE for both our Maryland and Delaware Ambassadors. Here, DE Senator and Majority Leader Nicole Poore came to share her passionate story about how she initially became involved in advocacy for her child, and how she now sees her role as being an advocate for all her constituents. Throughout the spring, we will continue to host Ambassador Symposiums in New Jersey, North Carolina, South Carolina, Georgia, New York and Rhode Island. 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!

As our Ambassador program continues to grow, we are seeking new Ambassadors from all service and support offices, and are seeking greater involvement from field staff, clients, and other organizations. It is vital that we join together as Hearts for Home Care to strengthen our collective voices in support of home care. Our Ambassadors serve as the forefront of our advocacy program, and truly make the difference in educating local legislators about home care and its impact on clients and communities.

For more information about the Ambassador program, upcoming 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  at the Hilton Garden Inn in Harrisburg

NJ – 3/13 at the New Jersey Learning Center in Pennsauken

NC – 3/28 at the North Carolina Learning Center in Charlotte

NY – TBD

RI – 4/9 at the Capitol in Providence (morning of Advocacy Day)

*Please note that the DE/MD Symposium has already occurred, but it’s not too late to become an Ambassador if you are interested! Contact Mike Sokoloski for information.

Ambassador Spotlight: Quotes from Our Advocates

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.”

Advocate Spotlight: Jen Collier


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.”

To learn more about PSI, please visit their website.

To learn more about H.R. 3976, click here.

Ambassadors Prove they are Ready to Share their Voices at Ambassador Training

Dozens of NJ Hearts for Home Care Ambassadors gather for a day of advocacy training.

In the beginning of March, New Jersey Hearts for home Care Ambassadors gathered for 2018 Ambassador Training to brainstorm and reflect on the many ways in which we can effectively advocate on behalf of our field employees, our clients, and their families. Whether it was discussing phases of grassroots advocacy, the local and federal landscapes and initiatives, or specific lobbying strategies, ambassadors made one thing clear: They are passionate, dedicated, informed, and ready to be the advocates that BAYADA needs.

Throughout Ambassador Training, ambassadors approached legislative issues with many perspectives in mind. Three such perspectives were that of the client, the client’s family, and the field employee. While there are needs and priorities specific to each category, ensuing discussions made it increasingly clear just how connected each of these perspectives are. For example, by advocating for a higher reimbursement rate and living wages for nurses and aides, we are directly advocating

for higher quality care for our clients. In other words, ambassadors stressed the need to understand and believe that when it comes to improving access to and quality of home health care, we are in this together.

Katie Macklin of the Alzheimer’s Association joined us to further reinforce our connectedness. Providing our ambassadors with information about advocacy at the Alzheimer’s Association, Katie identified the impact of organizing and mobilizing across organizations working for a common purpose: providing help and care to those who need it.

To tie in political and legislative perspectives, we were joined by New Jersey Assemblywoman Carol Murphy and lobbyists Gene Mulroy and Paul Crupi. Each provided ambassadors with thoughtful and useful strategies for meeting with and educating legislators. By far the most effective tool we have, they argued, was the power of storytelling.

No one illustrated this point better than Dana Isley, a BAYADA client and parent to a medically complex child. Dana delivered a phenomenal and incredibly moving speech about her home visit with a legislator during which she detailed some of the challenges that she and her daughter, Abi, face. Incredibly impacted by Dana and Abi’s story during this home visit, her legislator acted quickly to provide them resources and support. Dana’s story reiterates a vital point: Your stories make the biggest difference.

At the heart of this collaborative event was an understanding that relationships drive advocacy. Ambassadors’ motivation to advocate stemmed from their sense of dedication and deep closeness to those they care for. With this motivation, they are driven to form relationships with their legislators to advocate for their staff and clients. Our ambassadors continue to show that it only takes one person and one action to make a difference.

 

Summer Legislative Home Visits were a Success!

Submitted by Louise Lindenmeier, Director, Government Affairs (GAO)

Client and Family Advocacy in NJ are picking up speed. In the third quarter of 2017, we participated in four home visits with local legislators. This brings our totals for 2017 to nine home visits, one legislative round table, and one client district visit.

 

Hearts for Home Care Ambassador, Allison Nulton invited NJ state legislator Senator Thompson to a home visit for one of her clients from the TRP office. 

 

District 6 Assemblywoman Pamela Lampitt visited with 14 year old Mt. Laurel Pediatrics client Juan M and his mother, Carmen. 

 

 

Assemblyman Michael Patrick Carroll from District 25 visited the home of 20 year old PED client Lily Kaplan in Morristown. 

 

Dawn Moeller, mom to PED clients Zak and Tyler, invited Senator Cardinale into their home to share what it’s like to have not one, but two children who are medically fragile and require nursing care.

 

 

We have two visits already scheduled during the upcoming fourth quarter and a couple more pending.

 

If you’re interested in setting up a home visit for one of your clients, please contact Louise Lindenmeier or Tara Montague and we will be happy to assist you.