Thank You for Keeping Me Home: A Message from an Advocate

North Carolina advocate Ari A. during a trip to Washington, D.C.

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!

Sincerely,

Ari A. Charlotte, NC

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

ADVOCATE OPINION: The Impact of Home Health Care in my Life

UPDATE, January 11, 2019: After advocate Dimpal Patel sent her opinion piece to her local paper–the Gaston Gazette–they sent out a reporter who profiled Dimpal and the impact her home care services have had on her in greater detail! Great work advocating Dimpal!

BAYADA Home Health Care client and Hearts for Home Care advocate Dimpal Patel shares her view on home health care in an opinion submitted to her local newspaper.

Home care advocate Dimpal and her BAYADA nurse, Chastity.

I might sound like your typical local 23-year-old: I recently graduated from UNC Charlotte with a bachelor’s degree in marketing. I absolutely loved living independently on campus, and I love to play games and watch movies. But I am very different from most 23-year-olds you know because I rely on a trach and ventilator in order to survive, and it’s because of my home care nurses that I am able to grow and thrive independently.

My two BAYADA Home Health Care nurses—Chastity and Toni—have been with me for nine and six years each. They are like family to me, and they really are lifesavers. Without them, my parents would not be able to work and keep me at home, and I certainly would not have been able to experience college life. Chastity and Toni not only provide me with the skilled services that I need to survive, but they really are like best friends to me. I can’t imagine what my life would be without them—not only would it be without my two friends, but I’d likely be stuck in the hospital, a nursing home, or rely on my mom or dad to quit their job to take care of me.

My worst fear is that lawmakers cut Medicaid funding like they tried to do in Washington last year. If this happened, not only would I likely lose my nurses, but I’d be at risk of having to move into a nursing home. As someone who has experienced living independently and how it has allowed me to earn a degree and contribute to society, I ask that our state and federal legislators be mindful of what funding and service cuts can mean—not only to the state’s financially needy or to the elderly—but to 23-year-olds like me who want to continue living a full life.

-Dimpal Patel, Belmont, NC

The Heart of Client Advocacy: How You Can Make a Difference

Home care client advocates for his disabled wife and his home health aide
Mike Pollock (left) advocates on behalf of his wife Kathy (center in red) and Kathy’s aide Alma (standing)

Imagine this scene: A woman feels a familiar, nagging stiffness in her lower back as she leans over the edge of the tub to bathe her teenage daughter. Her daughter, who has a significant degenerative muscular disease, sits quietly and securely on a customized bath chair that fits snugly inside the tub. The tub area is decorated with different pieces of adaptive equipment such as a specialty grab bar, floor mat, hand-held shower head, and other items to make the bathing process possible for a person who cannot physically jump in and out of the shower. From start to finish, the entire bathing process takes more than an hour to safely complete.

Whether it is giving a bath, doing a tracheostomy change, starting a gastronomy tube feed, or transporting someone with multiple pieces of medical equipment, families who care for a loved one with a significant medical condition live a vastly different lifestyle than many other families. This lifestyle is not easily understood unless you’ve experienced it.

Legislative advocacy makes a difference

We have learned that when our clients and families talk to our elected officials and the people who make decisions about health care funding and regulations, it makes a difference. We have seen clear evidence across our country that when more people speak up, creating a stronger and louder voice, it is more likely that government-funded insurances—such as Medicaid and Medicare—will adjust funding and regulations to benefit families.

Many of our elected officials have personally not had the experience of bathing an adult child, performing a tracheostomy change, or providing the other types of medical and personal care that are frequently needed in the home. It’s also sometimes forgotten that this care is not just provided once a week or month, but many times a day or week, over years—over a lifetime. The continuous nature of these care needs is what makes home health care services so necessary.

We consult with legislators and insurance officials and ask for increases in our reimbursement rates so we can hire more employees and reduce open shifts for our clients. Our requests often are not approved. However, when the families who actually use the home care services join with us, it makes a big difference.

When clients and families explain why it is important to them not to have open shifts or why their paid caregiver needs a better wage, and share their personal experiences from within the home, it helps these officials understand the need for home care. The people who we petition for increases and better regulations are the same elected officials you vote for, and who are entrusted with serving the best interests of those they represent. This is at the heart of how and why people gathering and joining voices can make a difference. This is the heart of client advocacy.

How can you get involved?

Think about your personal experiences and consider what it’s like to care for a loved one who is in your home or nearby. Let’s unlock those firsthand experiences about the difference a home care nurse, aide, or therapist makes in the care that your loved one needs or receives. Voices of families coming together can create opportunities. Better insurance reimbursement can help us recruit more nurses and aides to fill open shifts. Better wages can mean a more sustainable career for home care workers, which in turn allows more people to remain at home while they receive the care they need.

For more information about how you can join the movement for a better tomorrow for home care, visit our website and sign up to be a Heart for Home Care today.

South Carolina Representative Garry Smith Visits Local Family to Learn How Home Care Impacts his Constituents

Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).
Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).

 

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 advocacy@bayada.com.

Why Client Advocacy Matters

 

BAYADA client Carly (front) is pictured here with NJ Assemblyman Anthony Bucco (right) during a legislative home visit, which served to familiarize the assemblyman about how home care affects his constituents. Carly and her mother Christina (left) also testified at a legislative hearing in Trenton about the need for increased Private Duty Nursing (PDN) rates.

 

 

 

 

 

 

 

 

 

 

 

 

 

Client advocacy matters more than that of home care industry professionals. While home care professionals can share facts and figures about home care with legislators, it is clients’ stories that truly paint the picture of what home care means to legislators’ constituents.

Whether a home care client is an infant, senior, or any age in-between, it is very likely that the nursing or aide services that they rely on is from a Medicaid or Medicare program.  What this means is that government officials are the ones making the decisions on care regulations and reimbursement rates rather than those who are regularly affected by home care.  Home care providers must accept these rates and regulations and provide care to the best of their abilities based on what the government has set forth rather than on what is actually best for clients and their families.

Home care employees regularly see that many of the government reimbursement rates for home care are low and have not been increased in years. This has a domino effect in that if providers can’t bring more revenue in, they can’t pay higher rates to attract more staff to care for current clients or for new clients who will need care in the future.

Many areas of our country are starting to age and will need caregivers to allow people to live in their homes instead of in facilities, yet projections indicate fewer people want to be professional caregivers due to the industry’s low wages. Additionally, more nurses are choosing employment in other types of settings, which makes it difficult for many home care clients to have adequate nursing coverage because facilities such as hospitals can pay nurses a higher wage.

As elections come and go, we see changes in our government leaders and with these changes come the possibility of healthcare policy changes. These changes can be sudden and unpredictable, and these changes often threaten funding cuts to important programs such as Medicaid or Medicare. Any funding cuts to these programs would be devastating to home care providers and to program beneficiaries.

The interesting thing is that the representatives and senators who we vote for at the state and federal level make these decisions, and few of them have strong healthcare backgrounds.  In addition, it is their job to represent all of the people from their respective districts to the best of their abilities. While provider employees can share their voices through legislative meetings, clients’ and their family members’ advocating and sharing their stories matter most.

Clients who benefit from home care and their family members have their own special stories to tell.  As the end users of nursing and aide services, clients and family members have the first-hand knowledge of how the Medicaid and Medicare programs are working and what could be done to improve them.  Clients names, faces, and shared stories paint a far more detailed picture of home care than industry professionals can with facts and figures. When legislators vote on issues related to home care, clients stories are better-remembered, and legislators are much more likely to vote for favorable home care policies with these in mind.

“I’ve been an advocate for my wife, who is 100 percent dependent, for 16 years,” said Mike Pollock, the husband of a client who advocates to protect home care for his wife and all who need services.  “Thanks to Medicare and Medicaid and BAYADA, I’ve been able to care for her at home.  Although Medicare and Medicaid are excellent resources, they have their issues.  An excellent resource for solving these issues are our elected officials,” Pollock said.  “In fact, elected officials are the only people capable of fixing issues that arise within Medicare and Medicaid. But they can’t help if they don’t know what we as family caregivers are dealing with every day.  Never hesitate about reaching out to them. It’s been my experience they are eager to help,” Pollock concluded.

By putting advocacy into action and connecting our clients to their elected officials, there is a far better chance that Medicaid and Medicare will be protected and grow with the needs of our clients. Please email me at rhynick@bayada.com for more information related to client and family advocacy and what you can do to help protect and strengthen the home care industry in your state and at the federal level.

Fifth Annual NJ BAYADA Champion Awards Ceremony Connects with Purpose

Dave Totaro, Champions Assemblywoman Nancy Munoz, Senator-elect Declan O’Scanlon, Lieutenant Governor-elect Sheila Oliver, and Louise Lindenmeier

In December at the BAYADA Home Health Care Champion Awards we reflected on a year of many victories and looked ahead to a new year with new challenges. Speakers, awardees and nearly 100 guests celebrated the successful increase of NJ’s fee-for-service rate for personal care assistants to $19 per hour. We also acknowledged employees’, clients’ and home care industry friends’ commitment to advocacy. These efforts led to the passage of A320/S1018, which was signed by Governor Christie earlier this year. Effective this July, A320/S1018 requires Managed Medicaid reimbursement rates for home health aide services to be at or above the state’s fee-for-service rate.

An inspirational highlight of the night, those in attendance were moved by Dana Insley’s touching speech. Dana is the mother of a young client who had a difficult start to life. Dana’s daughter was placed in foster care before being adopted by the Insley family. Dana spoke of the blessing home care has been in her family’s life and discussed the significant improvements her daughter has made with the support of her BAYADA nurses.

The evening’s honorees, Lieutenant Governor-elect Sheila Oliver, Senator-elect Declan O’Scanlon, and Assemblywoman Nancy Muñoz were visibly moved by Dana’s remarks and reiterated their support for home care during their acceptance remarks.

Also honored at the ceremony was Assemblyman Paul Moriarty, who represents New Jersey’s 4th District, which encompasses the Insley family’s home. Assemblyman Moriarty had visited the Insleys home in the past and was able to glean a full and meaningful understanding of the day-to-day life of a child receiving home care.

After a heartfelt evening that reminded everyone of our purpose and why we do what we do, Chief Government Affairs Officer David Totaro took the stage to remind all of those in attendance of the importance of advocacy and that, in addition to words, action is needed. He noted the huge impact of New Jersey advocates, who sent nearly one-quarter of all messages directed to federal legislators this summer from BAYADA’s network during the health care reform debate. Thank You for your commitment to advocacy.

Together with our Champions, we can make a meaningful difference to the lives of our clients and BAYADA caregivers. If you would like to get more involved in New Jersey’s advocacy program, sign up to become a Heart for Home Care Advocate.

Government Affairs Office Hits the Road in North Carolina

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

Often we talk about sharing our message, making our point, and communicating our value proposition.  Those are things we, in the Government Affairs Office (GAO), must do as we seek support for our issues with lawmakers.  One such conversation was had with Representative Nelson Dollar earlier last week, where Chief Government Affairs Officer Dave Totaro and I thanked him for his past support on the rate increases and continued our conversation around our priorities for the year to come.

If we are to continue to be successful in building a strong advocacy base, it is not enough to build relationships with lawmakers.  We must also get to know our internal BAYADA customers–our staff and clients.  As such, we visited six home health offices on the I-85 corridor.  It was great to be able to provide a legislative update, share advocacy information, and solicit feedback.  It helps ground our efforts and put things into perspective.

Special thanks to Division Director Richard Hopson, Area Director Shad Morgheim, and the office directors for allowing us to visit. We really enjoyed visiting with staff at CV, CHF, GAV, CAV, SC, DAV, RV, and DRF.

Photo:  Area Director Lee Dobson, Rep. Nelson Dollar, and Chief Government Affairs Officer Dave Totaro
Photo: Area Director Lee Dobson, Rep. Nelson Dollar, and Chief Government Affairs Officer Dave Totaro

Why Client Advocacy Matters

Submitted By Rick Hynick, Director, Government Affairs, Client and Family Advocacy

At BAYADA, we often see that many of the government reimbursement rates for programs such as Medicaid are low and have not been increased in long periods of time.  The difficult effect this has on our revenue then carries over on our ability to offer pay rates that are attractive to nurses and aides seeking employment.  They sometimes accept other offers because of this, making recruitment a challenge and also making open shifts more prevalent.

There are ways that we can work together to combat this challenge.  Our service offices have wonderful relationships with our clients and family members. It is these people who we provide services to who have the best understanding of what it is like to live minute-by-minute with complex medical needs.  Government Affairs and service office staff working together have the best opportunity get the voices and real-life experiences of our clients out to our legislators who can make a difference.

Our legislators have the responsibility to represent the people who live in their districts and also to control the reimbursement and regulatory matters of most of our government funded programs. Our goal is to show the true needs that exist by getting voices of the clients to them so when it is time to vote or make a decision about an important topic such as reimbursement, they will do so with the best information possible at hand. -Over time, this will lead to higher reimbursement rates and better living wages for our staff allowing us to better align with The BAYADA Way and help more people.

A BAYADA client advocates for better HHA wages with legislators and families looking on.

The daughter of a BAYADA client and a BAYADA nurse at an advocacy event.

Pediatric Nursing Shortage Featured in Two TV News Stories

Submitted by Laura Ness, Director, Government Affairs (GAO)

 It takes a special and highly trained individual to become a pediatric nurse.  You need to have the heart, be able to work independently and respond to the needs of your clients at a moment’s notice.  Because of the difficulty finding nurses to care for medically fragile children, families often have services from more than one agency, open shifts, or in some cases stay in the hospital longer than needed.

Recently, two regional news states featured two families whose children were not able to come home because of the lack of skilled nursing available.

Click the photos below to watch their stories.