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.

The Power of Advocacy: Remembering Katie Beckett, March 9, 1978-May 18, 2012

Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver. 
President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett, on the tarmac of Cedar Rapids Municipal Airport on September 20, 1984

 

Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.

Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.

Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.

At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.

At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.

Secretary Schweiker also created a review board to handle similar cases.  Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.

Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.

The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.

Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”

If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email advocacy@bayada.com today.

Rest in Peace Katie, your legacy lives on.  – March 9, 1978-May 18, 2012.

Maryland’s Home Care Association Welcomes New Executive Director

During session, Maryland-National Capital Homecare Association selected a new Executive Director.  Dawn Seek, LPN, a longtime board member with a career in many aspects of home health care and durable medical equipment, was hired as the association’s sole full-time employee.  She met with Dave Totaro and Shannon Gahs from the BAYADA Government Affairs Office (GAO) team last week to discuss her vision for the association and plans to work together in the coming year.  Her plans include adding Maryland’s voice to the national conversation of the future of home health care, partnering with other organizations that serve our clients and employees in Maryland, building more substantive committees and planning meetings that have more immediately-actionable information for members.

Quotes from our Advocates: Legislative Day in South Carolina

On April 4, the South Carolina Home Care and Hospice Association hosted its second annual Legislative and Advocacy Day. This year, a record-breaking total of nearly 50 advocates gathered in South Carolina’s state capitol for a day of meaningful and heartfelt advocacy. Advocates, which included two home care clients, walked the halls with a clear message: Investing in the state’s Medicaid Waiver programs will save the state money and keep medically fragile children, disabled adults, and seniors home with their loved ones and out of higher cost facilities.

With their passionate message in hand, advocates spoke with over 50 legislators about the importance of home care. The highlight of the day was the recognition the home care advocates received on the house floor by Speaker Pro Tempore Representative Tommy Pope!

Advocates were inspired by the impact they made that day. Below, please find several quotes and pictures submitted by our advocates.


Brandon Keisler, Haley Keisler, Rep. Jimmy Bales, Stephanie Black, and home care clients Max and Matthew K.
“It was an honor to participate in this year’s Advocacy and Legislative Day, to be a part of such an impactful team, and especially to bring my two boys with special needs to the event. It was a wonderful to be able show the representatives firsthand why we need higher Medicaid reimbursement rates in South Carolina.” 
 -Haley Keisler

Dan Noel, Jen Collier, Rep. Bruce Bryant, and Amy Ramey.

“Speaking with legislators about the need for higher Medicaid reimbursement rates in South Carolina was an amazing experience. We had a great turnout and I was especially pleased with all the love our fellow advocates gave us; their support was energizing– what a great group of people!”   -Amy Ramey

“It was overwhelming to see so many people come together for a common goal. We advocated for something so important and I am so proud to have been a part of that!”   -Jennifer Collier


Alisa Borovik, Nicole Lugo, Rep. Sam Rivers, Tara Montague, and Jaime Bennett.

“This was my first Legislative Day and it certainly will not be my last. It was truly remarkable for all of us to come together from different BAYADA backgrounds to make this day a success. I look forward to advocating for my company and my state in the future!”

-Jaime Bennett


Nicole Lugo, Nancy Mace, and Lee Dobson.


“It was encouraging to see the growth of our advocacy group over one year and it is clear that Hearts for Home Care has the opportunity to be the biggest voice for home care in South Carolina.”

-Nicole Lugo

 


Louise Lindenmeier, Rep. Leon Howard, and Tim Peterkin.


“It was truly a pleasure to connect with our South Carolina legislators to explain how our services can keep their constituents at home, explain the cost savings of home care versus hospitals and facilities, and connect legislators with our purpose and mission.”

-Tim Peterkin


Pictured: Ryan Burnaugh, Rep. G. Murrell Smith, Melissa Allman, and Dave Totaro.

 

“We believe Home Care is important to our communities, and I support the good work you do. Please let me know how I can help you.” 

-SC House Ways and Means Health and Human Services Subcommittee Chairman Rep. G. Murrell Smith

 


Karen Noblett, Foster Krebs, Speaker Pro Tempore Tommy Pope, Maggie Tracey, and Melissa Allman.

 

“The South Carolina Legislative Day was a great opportunity to meet with legislators and talk to them about the importance of investing in home care… I can’t wait to see the impact that we have on laws affecting home care!”   -Foster Krebs


Nicole Lugo, Rep. Neal Collins, Tara Montague, Jaime Bennett, and Dominic Molin.

“Over the course of the day I felt a strong sense of comradery, pride, and support when—no matter where I looked—I saw a colleague dressed in their finest red! It was great to be a part of something bigger than myself by advocating for those who need it most.”

-Dominic Molin


Dave Totaro, Rep. Katherine Arrington, and Laura Jaycox.

 

“Legislative Day made it possible to get involved and support home care even though I had no prior experience. I enjoyed meeting everyone and learned so much. Thank you so much to my fellow advocates for all of your knowledge and support!”

-Laura Jaycox


THANK YOU to all of our advocates that participated in 2018’s Legislative and Advocacy Day!

Hearts for Home Care advocates in South Carolina Capitol for Lobby Day

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.

The Power of Advocacy: Home Care Employees Share Impassioned Testimony to Advocate for Nursing Rate Increases

Home health care advocate testifies in front of Delaware Joint Finance Committee 2018
BAYADA RN Victoria Carter advocates for higher reimbursement rates by providing moving testimony in front of the Delaware Joint Finance Committee

On February 21, seven BAYADA Home Health Care employees, one of whom is a parent and caregiver of a medically complex child, testified in front of a dozen Delaware state legislators and nearly 80 community members to advocate for a Medicaid reimbursement rate increase for registered nurses (RNs) and licensed practical nurses (LPNs).

The Delaware Joint Finance Committee met to hear the Department of Health and Social Services’ (DHSS) annual budget request in what ended up being a crowded room that drew so many members of the public that overflow seating had to be provided in the cafeteria, where a live video feed of the hearing was streamed. Though a few of these advocates were initially hesitant to speak in front of legislators- let alone such a crowd- what kept them going is their commitment to advocating on behalf of home care nurses, their clients, and their clients’ loved ones.

These advocates’ testimonies detailed their personal stories of why the committee should include additional funds to DHSS’s budget to be used to increase the state’s reimbursement rates for RN and LPN care by about 25%. Delaware’s current rates have not been increased in more than ten years, and these current rates are not adequate to keep up with demand for in-home nursing care because of the pressure that low rates place on providers’ ability to recruit and retain quality nurses. With a rate increase for RN and LPN care, providers would be able to attract more nurses to deliver the in-home care that pediatric, adult, and senior home care clients need.

BAYADA registered nurse Jen Saulsbury shared a moving story about two of her pediatric clients and the impact that nursing turnover rates, which stem from Delaware’s low reimbursement rates, has on them. She shared a crayon-drawn card from one of her pediatric clients to accompany her story, which nearly brought the committee to tears.

Committee co-chair Representative Melanie George-Smith and Senator Nicole Poore vocalized their support of increased reimbursement rates for RN and LPN care. It goes to show that advocacy is a powerful force in creating the changes necessary to support home care employees, clients, and their families.

Top left to bottom right: Danielle Myers, Jennifer Scott, Alice Knott, Amanda Brady, nursing student Morgan Luther; Jennifer Saulsbury, Victoria Carter, Shannon Gahs

Advocacy is powerful. The stories that these advocates shared in front of the committee were not those of data, numbers, and dollar signs, but rather their unique, passionate perspectives of why this issue is so important that it deserves legislative attention and action.

Advocacy doesn’t necessarily involve testifying in front of a crowded room. It can be sharing your unique story or picture with us, writing an email to a legislator, or participating in a meeting to talk about issues you face every day. A state-funded nursing rate increase cannot happen without getting other passionate individuals involved. If you would like to find out how you can to advocate for better home care laws and regulations, let’s talk about how you can get involved. Email me today!

States Struggle to Recruit and Retain In-Home Nurses Due to Low Reimbursement Rates… But Advocacy Can Help

Home health care companies around the country struggle to recruit and retain enough qualified workers to support the growing number of children, adults and seniors that want to be cared for in their own homes. Recruitment and retention issues stem from a number of reasons, including the nationwide nursing shortage, low US unemployment rates, and inadequate Medicaid reimbursement rates that leave home care providers in a position where their wages cannot compete with those of other settings and industries.

BAYADA Home Health Care was recently featured in a Wall Street Journal article for the company’s efforts in solving for this by recruiting nurses from Puerto Rico to fill open nursing positions in Minneapolis. The island’s unemployment rate, currently at 10.8% is much higher than that of Minneapolis, which is currently listed at 2.4%.

A 2.4% unemployment rate is low even compared to the US rate, which is currently at a 17-year low of 4.1%. This low unemployment rate is compounded by the fact that in many states, Medicaid reimbursement rates are too low for home care providers to be able to recruit and retain workers, who can be paid a higher wage in other settings, like hospitals, and industries, like fast food and retail.

And it doesn’t end with a lack of workers for home care providers. This lack of caregivers can lead to an access to care issue in which individuals who can be cared for at home are left with no option but to receive care in a hospital or institution. Finding qualified caregivers is often cited as home care providers’ top challenge, and future estimates show that demand for in-home care will continue to grow due to the aging of baby boomers at alarming speeds.

What can you do to help? Share your voice. Reimbursement rate review and adjustment decisions are generally made in state capitols when legislators determine that such a need exists. This need must be communicated to legislators so that they understand the pressing nature of the issue and what could happen to the state’s Medicaid population if the issue is not addressed.

We can help you reach your legislators to let them know what increased reimbursement rates mean for you and your community. And if you would like to make an even bigger impact, consider meeting your lawmakers in-person at our Lobby Day. We take care of the scheduling and preparations- all you need to do is show up and share your voice. Upcoming Lobby Days are as follows:

Minneapolis, Minnesota: 3/6/18
Dover, Delaware: 3/14/18
Columbus, South Carolina: 4/4/18
Harrisburg, Pennsylvania: 5/22/18
Raleigh, North Carolina: 5/30/18
New Jersey: District office visits 4/20-5/4/18
Maryland: TBD

Contact Rick Hynick to find out what you can do to advocate, whether it be sharing your personal story, contacting your legislators, or participating in an upcoming state Lobby Day!

Advocacy Key to Getting Hospitalized Children Home

Increased wages for pediatric home nurses can bring more hospitalized children back home to their parents.

ThinkAdvisor recently published an article about numerous cases across the country in which hospitalized children are cleared to return home but cannot due to the severe shortage of home care nurses.  This means that these children must live in the hospital or other institution until they can get the nursing care they need at home. This lack of available skilled nurses has created a huge financial and emotional strain on these children’s parents and families.

So where are these nurses? Making higher wages in other settings and industries. Even though home nursing is almost always less expensive than hospital care, private insurance rarely covers the service and Medicaid pays very little for it. This leaves few nurses willing to work for these low wages, especially when they can receive higher pay in other settings or other industries entirely.

But it doesn’t have to be this way! Increasing the reimbursement rate for in-home nurses is possible, and increased wages increase parents’ access to in-home nursing care for their child. In Pennsylvania, for example, BAYADA home health care employees, clients, and clients’ family members advocated for a pediatric nursing rate increase and received a $5 per hour increase. BAYADA saw open hours for the program decrease by nearly 50% for one of our largest payors.

A parent coalition in Massachusetts successfully advocated for increased reimbursement rates after over a decade of stagnant rates. But in Massachusetts, the increase still is not enough—parents say that the wages remain too low to attract and retain enough home nurses for their state’s medically complex pediatric population.

In Pennsylvania, Massachusetts and in other states around the nation fighting an in-home nursing shortage, advocacy is the key. It’s important that we raise our voices about this issue so that legislators can understand what home care means to parents of medically complex children.

If you are interested in finding out what you can do to help bring these children home, let’s chat! Shoot an email to advocacy@bayada.com.

Educating New SC Legislator Rep. Nancy Mace about Home Care

New South Carolina representative Nancy Mace was sworn into office this past month. When new legislators are sworn in, it is important that we educate them about the importance of home health care and how it has enabled thousands of South Carolinians to stay at home with their loved ones. This is especially true for Rep. Mace-   Since she will be serving on the House Medical Committee, which oversees regulatory issues for the home care industry, it will be important for us to educate her on the challenges our relatively new offices are facing.

Rep. Nancy Mace recently won the special election for House District 99 in Charleston and Berkeley counties and is the first woman to ever win this seat. As a former business owner of a small public relations technology start-up, she understands the grit and determination needed to get a business off the ground. We are hopeful that her business experience and committee membership will spur her to become a legislative champion for our issues.

Legislative meetings are most effective with real life stories from constituents. If you are interested in joining me to meet Rep. Mace and tell her about what home care means to you and your clients, let me know!

Equalizing Access Legislation Approved in PA House Health Committee

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

On November 21, the House Health Committee met and unanimously voted to approve HB 1829. HB 1829 allows individuals to be presumed eligible for home health care. This practice is currently allowed for nursing homes but is not extended to home care. Because of this, Pennsylvanians often go without the help they need or are unnecessarily placed in a nursing home. The legislation approved included two amendments, which changes the name “presumptive eligibility” to “deemed eligibility”. It also extends this process to allow adult day centers to do presumptive eligibility as well. We are very pleased with this outcome. Next the bill will go to the House Appropriations Committee. The Government Affairs Office (GAO) is working to set up meetings with Appropriations Committee members to ask them to support this legislation.