New Hearts for Home Care Member Showcases Advocacy at Home!

Left: Gaston Gazette reporter chats with Dimpal and her BAYADA nurse Amy.
Center: Dimpal’s long-time nurse Chastity helped Dimpal live on campus and graduate from UNC Charlotte!
Right: Dimpal’s nurse Toni has been by her side for nearly a decade.

Oftentimes, when we hear the word “advocacy” we think about attending a BAYADA-sponsored lobby day in a state capitol or visiting a legislator’s local office to ask him or her to support or oppose a piece of legislation. While both those options are in fact forms of advocacy, they’re not the only ones.

North Carolina client Dimpal Patel recently joined Hearts for Home Care, a program that BAYADA’s Government Affairs Office began to get clients, families, staff members, and the community at-large more engaged in legislative advocacy. She expressed that she wanted to get involved, but as an individual with a trach, vent, and wheelchair, she would need a lot of assistance traveling to advocate in person.

The Hearts for Home Care team immediately encouraged her to reach out to her local paper by submitting a short opinion piece about her thoughts on home care. She shared an insightful take on how her nurses enabled her to live on campus and graduate from UNC Charlotte, as well as how important Medicaid is for her and so many others that rely on home care.

The Gaston Gazette received her piece, but instead of publishing it, they sent a reporter to Dimpal’s home to get a better look at how home care impacts her life first-hand. The reporter spoke with Dimpal and her nurse, Amy, about the importance of legislators’ mindfulness of continued Medicaid funding—and her story made the paper’s front page!

“I’ve always wanted to get more involved in advocacy because I think it’s important that our state and federal decision makers hear our voice and understand how important home care is in our communities… but I was always worried because I can’t get to the state capitol or to legislative hearings as easily as others can. I’m grateful that Hearts for Home Care has given me the tools to help me begin my advocacy journey from home,” Dimpal told us recently.

Home care by its very nature often helps those with limited mobility to live a full life and remain at home. That’s why the Hearts for Home Care team developed a robust menu of advocacy activities—so that anyone who wants to get involved in advocacy can! Reaching out to legislators via traditional media or social media, calling into a town hall, sending a newspaper clipping or an email are just a few of the many ways individuals can advocate from their own home.

In today’s world elected officials and regular individuals alike are bombarded with messages, from advertisements on the bus to a long social media newsfeed, all the way to robotic phone calls and junk mail. It’s important that we take a step back to cut through the noise to deliver our advocacy message to state and federal decision makers: Home care is important to me, and it should be important to you too.

For more information on how you, your colleagues, or your clients can share your voice in advocacy, please email advocacy@bayada.com or sign up to join Hearts for Home Care today!

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  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

NY – TBD

RI – TBD

*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.

Reflecting on South Carolina’s and Georgia’s First Year with a Full-Time GAO Program

By: Melissa Allman, GAO Director for South Carolina and Georgia

Thank you to the many advocates that contributed to SC and GA’s successes in 2018!

What a difference a year makes. This time last year I was just transitioning out of my role as Division Director for the Palmetto Division and into my new role directing our advocacy activities in South Carolina and Georgia. I didn’t know I was in for so much! As I reflect back on 2018, my thoughts go immediately to two things: First, the successes that we were able to generate for our staff and clients and secondly, the many BAYADA leadership, staff, and clients that shared their voices and helped us win!

South Carolina

This year not only were we able to achieve an 8.2% rate increase for all personal care Medicaid waiver services in South Carolina, but we made so much headway engaging our office staff, field staff, and clients. As one person running around in the state house, I can only do so much. It is your stories and your voices that truly have made our first full-time year in South Carolina a remarkably successful year.

Aside from our rate increase, South Carolina advocates hosted five home visits with state lawmakers, hosted two legislative roundtables, and enabled Speaker Pro Tempore Tommy Pope attended a Hero Ceremony for his constituent—a home health aide from RHS. In addition, we attended several events to support our champions. Then-CLP Director, Haley Keisler was named South Carolina Home Care and Hospice Association’s (SCHCHA) 2018 Professional of the Year, and ROC client Mitchell H.’s mom and caregiver, Tammy Roberts, was recognized as the SCHCHA 2018 Caregiver of the Year. 

Left: SCHCHA Executive Director Tim Rogers (left) and I (right) pose with SCHCHA’s 2018 Caregiver of the Year Tammy Roberts (center) and her grandson.

Right: SCHCHA Executive Director Tim Rogers (left) and I (right) pose with SCHCHA’s 2018 Professional of the Year, former CLP director and current AVL director Haley Keisler and her family.

Additionally, we were able to engage a record 25 Hearts for Home Care ambassadors and advocates to Lobby Day, where we connected BAYADA staff to lawmakers to share why our families deserve to be able to stay together through home care.

A record breaking Lobby Day in Columbia

Georgia

As I reflect back on the past year, my heart is full of gratitude for all of Georgia’s leadership, Ambassadors, and advocates. Your support and advocacy made all the difference! Not only were we able to generate a rate increase for private duty nursing (PDN) services under the Georgia Pediatric Program (GAPP) waiver, but we’ve made our voices heard and our industry and company better known in the state capitol. We are truly set up for a stellar 2019!

So far in 2019 we have already began meeting with Georgia’s House and Senate leadership and the Georgia Department of Community Health (GCH). We are seeking to further increase the RN and LPN rates under the GAPP program and gain enhancements for PDN waivers for the adult population under the New Options Waiver (NOW), Comprehensive Supports Waiver (COMP) and Independent Care Waiver (ICWP) programs. We will be seeking even further involvement from our GA advocates, and I am excited to see what we can accomplish together!

Meetings are already underway for 2019: I can’t wait to see what we can accomplish together for GA!

It was a true honor to work along side of you all, and I’m looking forward to working with you as we continue to raise awareness for our state’s most vulnerable children and adults. Thank you to the many advocates that made 2018 a success, and that will help pave the way for more successes in South Carolina in 2019 and beyond!

Government Affairs Office Attends Two Heartfelt Visits with New Jersey Clients

Last week, Chief Government Affairs Officer Dave Totaro, Client and Family Advocacy Manager Tara Montague, and Public Affairs Manager Alisa Borovik traveled to northern New Jersey to meet two BAYADA clients and their caregivers to learn more about how home care has impacted their lives. The Government Affairs Office (GAO) also brought along representatives from Regan Communications Group, a public affairs firm we’ve engaged to support the GAO initiative to increase public awareness of issues that our clients and staff regularly face, such as accessing home care and recruiting and retaining quality staff to meet the demand in our communities.

Meeting Addy and Gloria


Photo: DOV client Addy R. and her HHA Gloria have an unbreakable bond

First, the team stopped by the Dover, NJ (DOV) assistive care state programs office to meet with Client Services Manager Helena Anton, where we learned about the struggles the office regularly faces in recruiting and retaining home health aides. DOV client Addy R. and her CHHA Gloria came in to meet with GAO and Regan, who were nearly brought to tears by Addy’s story regarding the challenges she has been able to overcome with her “teammate,” which is what she calls Gloria.

“I was extremely touched by Addy’s and Gloria’s relationship. Not only is it clear how much Gloria has impacted Addy’s daily life and her sense of self-worth, but the way Gloria talks about Addy’s influence on her own life is incredible. You can tell that Gloria was truly put on this earth to be the nurturing, compassionate caregiver that she is,” said Tara Montague.

Recently, Addy and Gloria visited Senator Steve Oroho to share their story and to advocate for better state home care policies. “Helping people is important. And it’s important that those who help others get the help that they need too,” Addy told the group.

Photo: DOV client Addy R. and her HHA Gloria have an unbreakable bond

Lili and Emma Welcome Advocacy into Their Home

Lili and her nurse Barbara share a high five.

Next, GAO and Regan traveled to Morristown to visit Morris Plains, NJ Pediatrics (PED) client Liliana “Lili” K. and her mother Emma in their home. As a single mom, Emma relies on home nursing so that she can keep her full-time job and keep Lili at home. She told us that her PED team works hard to ensure every one of Lili’s shifts are covered and that her BAYADA nurses all deliver top-notch quality care to her daughter.

She also shared sentiments about times when coverage wasn’t so steady, “Our routine and our comfort level is only as good as today. When Lili’s main nurse, Liz, retired, we had a few months where we didn’t know what tomorrow would bring.”

Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that families like hers can also receive the home care they need.

BAYADA continues to fight for higher reimbursement rates under the state’s private duty nursing (PDN) program, one of our major goals in New Jersey in 2019.

“It’s our clients’ and families’ voices that make the biggest impact on our state and federal elected officials’ decisions about home care. Because of advocates like Addy and Emma, legislators better understand the impact home care has on their communities,” said Dave Totaro. “In 2019, we’re expanding our toolbox. We are growing BAYADA’s public affairs program so that our message is more global. Our staff and clients deserve better, and their voices will be heard!”

A special thanks to Gloriosa Division Director Fredy Villareal, PED Director Christine Rios, and the many employees that made these visits happen! Seeing our clients firsthand is always so impactful and inspiring—GAO is excited to move forward with our 2019 goals on behalf of all staff and clients. To learn about ways you can engage in advocacy, email advocacy@bayada.com today!

Across the Country, Parents and Home Care Supporters Advocate for Better Wages for Caregivers

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.

To learn more about how you can engage in home care advocacy, visit www.heartsforhomecare.com or email advocacy@bayada.com today.

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

What the Midterm Elections Mean for Health Care in the US: 4 Key Takeaways

Last Tuesday voters took the polls in droves. The high turnout rate—one we haven’t seen for a midterm election in half a century—was driven by strong opinions of President Trump and competitive races that dotted the whole country. But what does the election mean for the future of health care—and home care—in the US? 

Key Takeaway 1: Health care is beginning to mean a whole lot more to US citizens

Exit polls around the country proved that Americans care about health care, and they want their legislators to care too. 41 percent of voters participated in exit polling around the country cited health care as the number one issue they considered when they made ballot decisions. This was the number one issue cited, with immigration trailing at 23 percent and the economy at 21.

This prioritization contributed to Democrats’ success in flipping the US House of Representatives from red to blue. Democrats around the country campaigned on a vow to protect the 130 million Americans currently living with pre-existing health conditions and to lower prescription drug costs. While some candidates ran on a more aggressive health care-focused platform than others, the election results make it clear that Americans care about health care and that Republicans’ threats to cut Medicaid and Medicare funding and rollback the Affordable Care Act (ACA, also widely known as Obamacare) was not taken lightly by voters.

This victory puts Democrats in a better position to test the far-reaching health care agenda they have campaigned on for over a year, though any resulting legislation will likely be curtailed by the Republican-held Senate and White House.

Key Takeaway 2: Medicaid Expansion is among Tuesday’s biggest winners

The people have spoken, and they’ve said one thing loud and clear: You cannot block our access to expanded Medicaid. Through ballot measures and new blood in several states’ Governors’ mansions, Obama’s Medicaid expansion will get even bigger in the coming years.

Voters in three deeply red states—Idaho, Nebraska, and Utah—approved ballot measures that specifically called for Medicaid expansion. These measures acted as a tool to gain access to expansion funding despite state lawmakers’ resistance of the optional program. Voters in Montana, which currently has Medicaid expansion, rejected a ballot measure that would have permanently funded the program beyond its June 2019 expiration date. However, Republican state lawmakers have said they want to continue the program with new work requirements.

In addition to ballot measures, the election of new democratic governors bodes well for expansion in three additional states: Kansas, Maine, and Wisconsin, where newly-elected governors have already expressed their support of expansion.

Together, these elections will likely bring the largest growth to Medicaid expansion since the ACA’s early days. At minimum, three states will join the 36 states and Washington, D.C. that have already opted for expanded Medicaid dollars.

To recap the expansion program: In 2014 Medicaid expansion under the ACA became an option for states. 24 states and D.C. opted for it immediately and by mid-2016, an additional seven states signed on. Since then, no additional state has signed on, likely due to resistance from lawmakers in those states. Medicaid expansion allows for more individuals who are above the poverty line to access Medicaid care. The expansion makes financial sense to states who want to provide care for more of their citizens: The federal government covered 100 percent of expansion costs through 2016, currently covers 94 percent of those costs, and will cover 90% in 2020 and beyond. Currently, without the addition of new states, the program allows for 13.6 million people to access Medicaid that could not access it prior to expansion.

Read more about the election’s implications for Medicaid expansion, and about studies that point to the expansion’s effects, read the Kaiser Family Foundation’s take.

Key Takeaway 3: Home care champion US Rep. Frank Pallone is about to be in a health care leadership position

Health care was a hot topic in this election, and Democrats put it at the forefront of their campaigns. Now its up to longtime NJ congressman Frank Pallone to help Democrats keep the promises they made to voters.

In January, Rep. Pallone will take over at the helm of the House Energy and Commerce Committee—a powerful committee that sees approximately 60 percent of bills before they move forward to a floor vote. As leader of this committee, Pallone will be in the center of the much-anticipated, high-volume health care debate, which will in turn form the backdrop of 2020’s presidential race. He will essentially hold the gavel over the Democratic party’s health agenda and will set the tone on named priorities like protecting and strengthening the ACA, and lowering prescription drug costs.

Pallone, who was elected to his 16th term during this election, is well-informed on home care and its impact and importance to millions of Americans across the country. He also understands the potential financial benefits that home care has on state and federal bottom lines. While the partisan tug-of-war over the ACA is likely to take center stage over the coming few years, the home care industry is excited and hopeful about what this leadership position may mean for the future of in-home health care.

Key Takeaway 4: Home care is making a name for itself

Voters in Maine shot down a proposal to create a universal home care program, but there are positive implications: Home care gained awareness on the national front due to the initiative. The proposal, known as “Question One,” would have provided free home-based care to adults over 65 and to individuals in the state living with disabilities. To fund the initiative, Question One proposed a tax on high-income households.

While the measure garnered a great deal of opposition and controversy, home care supporters tout that this first-of-its-kind measure raised awareness of home care and served as a case study for future home care initiatives across the US. “We are incredibly proud of the hundreds of volunteers who placed universal home care on the ballot…We’re also proud to have put Maine’s home care crisis front and center in the public debate,” Yes on One Campaign Manager Ben Chin said in a statement.

Not far from Maine, an unrelated “Question One,” which would have been detrimental to home care providers in the state, failed to woo voters. The proposal would have imposed ratios limiting the number of patients that could be assigned at a time to individual nurses at hospitals and health clinics.

This proposal, which was sponsored by a state nurses union, created a divisive battle. Hospital groups, home care providers, and even fellow nurses, united to push back against the measure—and succeeded. In the end, the union’s view that nurse-patient ratios offer increased patient safety lost out to the opposition, which proved to voters that the “one-size-fits-all” approach increases costs and puts undue pressure on hospitals and other settings, including home care and other post-acute settings that are reimbursed at lower rates. To hear more about how MA’s Question One would have impacted home care, listen to the Home Care Alliance of Massachusetts’ podcast.

Maine and Massachusetts’ battles prove that public awareness and support around home care is growing, and that the nation’s projected home care crisis is more widely-known. The more home care makes it to the public sphere, the better-positioned it is to be acted upon and prioritized at both state and national levels.

 

Advocacy Win! Home Care Employee Christine Detweiler’s Advocacy Efforts Lead to New SMA Law

Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!

Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!
Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!

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!

A special thanks to Rep. Quinn for her work to get this law on the books on behalf of all of Pennsylvania’s future families. Click here to read the opinion piece that Gideon’s mom, Ruth M., authored, and The Intelligencer published!

To learn more about how your office can host a home visit, or ways you can get involved with advocacy on behalf of all home care staff and clients, email advocacy@bayada.com today.

Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day
Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day

ADVOCATE OPINION: A Win for PA’s Expecting Parents: Thank You for Adding SMA to the Newborn Screening List

Published in The Intelligencer Tuesday, October 30

When my husband and I found out we were pregnant with our third child, we were elated. By this point, we knew what to expect—or so we thought. Every step we took bringing our new baby boy into the world had gone as planned, until we brought him home and realized that something was wrong.

Gideon was born on June 17, 2015. Like his two older brothers, his prenatal screenings indicated he was developing healthily, and on the day he was born he passed his newborn screening test without a hitch. It wasn’t until weeks later that we started noticing that Gideon wasn’t developing at the same rate his older brothers were at his age.

Fast forward to Gideon’s emergency admission into CHOP, where doctors officially diagnosed him with type 1 Spinal Muscular Atrophy (SMA), a rare degenerative disease. Children with this diagnosis rarely live longer than one year, and the doctors advised us to take him home and enjoy him, as he would likely not make it to his first birthday.

But instead, we fought. While there was no treatment or cure for SMA at the time, we learned that CHOP was starting a clinical trial for children like Gideon. Every day we persisted until we got Gideon into the trial, where they dosed him with an experimental drug that was supposed to prevent further muscle degeneration.

In December 2017, the FDA officially approved Spinraza, the drug Gideon received during his trial. Though Spinraza took time to work, Gideon’s disease is no longer progressing and some motor function has slowly returned. It has since been proven that the sooner the drug is introduced into affected children’s bodies, the sooner regression can be stopped and even more—progression can be made.

Had Gideon been diagnosed early and dosed within days of birth, today he would likely be holding his head up, swallowing, sitting unassisted, and walking and running just like his brothers. However, if, like with Gideon, Spinraza is not administered early enough, then mobility and muscle loss come very quickly, and only very slow gains can be made.

We are so grateful that Gideon is home, that we can give him the best life possible, and that—though ant-sized—he is making steps towards regaining function. But we are always wondering about the what ifs: What if we knew he had SMA right away? What if Spinraza been administered to him before the onset of symptoms? And what if we could prevent this from happening to other families? That’s when staff from Gideon’s home health care provider, BAYADA, introduced us to our state representative, Marguerite Quinn.

Representative Quinn came to our home to learn about our family and our struggles. Afterwards, she reached out to local community organizations to help us adapt our home to better fit Gideon’s needs. We were grateful for her assistance but never expected her to do what she did next: Rep. Quinn drafted and introduced legislation to add SMA to state’s mandatory newborn screening list so that the disease can be detected as early as possible.

Rep. Quinn visited our home to hear Gideon's story and learn more about what home care means to our family.
Rep. Quinn visited our home to hear Gideon’s story and learn more about what home care means to our family.

After introducing the legislation, Rep. Quinn encouraged the state Newborn Screening Advisory Board to support the measure. As a result of her continued efforts, this past week Secretary of Health Dr. Rachel Levine signed the recommendation.

I am in awe of how many children’s lives will have a totally new trajectory due to the state’s actions. Thank you, Rep. Quinn, for bringing attention to this issue and for giving our family and future families across the Commonwealth the opportunity to live a fairer and fuller life.

Ruth M., Gideon’s mom

Combatting the In-Home Caregiver Crisis: What Can We Do?

North Carolina family meets with their state legislator to discuss the importance of home care in their lives.
North Carolina family meets with their state legislator to discuss the importance of home care in their lives.

Whether you worry about your aging parents’ ability to remember to take their medication on time or you have a medically-complex child that requires 24-7 skilled nursing care, families that rely on home care across the country are feeling the squeeze: There just aren’t enough quality in-home caregivers, and it is quickly becoming a crisis. While more of the general public is beginning to understand the negative impact this is having on our communities, there is much more to be done to mitigate the impending consequences. Together, we can advocate to combat this looming access-to-care crisis.

We’ve read the articles and we know the facts. Home care is the most cost-effective and patient-preferred healthcare setting for individuals and families who want to remain at home. This is true for older Americans who wish to age in place to parents who believe their child should live at home and not be raised in costly institutional settings. Moreover, demand for in-home caregivers will be continue to increase as baby boomers age and better treatments for chronic illnesses and disabilities continue to become more widely available.

If home health care is in high demand, why are we still facing a shortage of available workers? Home care providers struggle to recruit and retain enough quality caregivers to keep up with the growing demand. Because many insurance companies still do not cover in-home healthcare services, many home care providers rely on government reimbursement rates to cover provided services. That is: When a patient is prescribed and authorized for in-home care, the state reimburses the home care provider for delivering that service. The provider relies on that reimbursement rate to not only pay the direct care worker’s wages, benefits, supplies, and training, but also to cover wages and costs for the workers needed to coordinate and supervise in-home staff.

While rates vary widely depending on the service and the state the care is delivered in, there is a dominant trend that contributes to providers’ inability to keep up with demand: State governments’ reimbursement rates are too low to attract and retain the proper, high-quality workforce necessary to deliver this care. And there are several competitors at play: Hospitals and other institutional settings like nursing homes are able to pay workers more because one caregiver can deliver multiple services to multiple people during one shift, so institutions are able to rely on multiple reimbursements to cover employee wages and costs. Additionally, the home care industry faces competition from non-healthcare industries like fast food companies and retailers, which can often pay workers at competitive rates and offer more consistent schedules and other benefits.

While home health care offers one-on-one care to vulnerable individuals at a lower cost, these reimbursement rates have stagnated and fallen past the cost-of-living across many states. Some states, have not addressed reimbursement rates for decades, putting home care providers at even more of a disadvantage when competing for labor. For example, California has not increased its reimbursement rate for Medicaid home nursing services for nearly two decades. Even the most compassionate home care workers  who enjoy the personalized nature of home care are leaving the industry for better-paying jobs in neighboring states and in other settings and industries.

Who can resolve this issue? By and large, state governments are responsible for making decisions that affect home care, including reviewing reimbursement rates and adjusting them so that home health care providers can attract the workforce necessary to keep vulnerable state populations at home. While the rates vary in each state, one thing is consistent across state lines: legislators, who are responsible for making these decisions, are under great pressure to keep state budgets in line while making the necessary expenditures to all of the departments, industries, and populations that need the government’s financial support. All too often, other industries’ voices are heard louder, and home health care continues to fall by the wayside.

Is there any good news? Yes: People are beginning to see the problem. Public awareness of the importance of home care and of the impending access-to-care crisis is becoming more widespread. People care about the issue now more than ever before, and people across the country are beginning to realize that, even if it doesn’t affect them now, home care will impact their lives in the future.

Reports, studies, and articles have made information about the home care industry and the widening labor gap more available. Mercer Health Provider Advisory recently created an interactive map that visually depicts the deficit of home health aides and other healthcare workers in specific states and across the US through 2024. Articles have come out in the Washington PostBoston Globe,  Baltimore Sun, and in local news outlets in South Carolina and Rhode Island, among other states.

And the other good news is evident to many: Home care is simply the right choice. Many legislators are aware of home care’s cost-saving potential, especially as home care keeps people out of costlier institutional settings and prevents ER stays and hospital admissions. And while they may understand the advantages that home care offers families in general, not all legislators realize the impact home care has on the families that they directly represent as public officials.

Public awareness isn’t enough. Action is necessary. Studies, reports, articles, and direct lobbying efforts from home care providers and state and federal associations and partnerships have raised the public’s and legislators’ awareness of home care as a service. However, lawmakers’ awareness of home care issues have not yet spurred them into taking action to address stagnating reimbursement rates and providers’ inability to compete for a fair share of the labor market. We must leverage our collective voices by truly showing legislators what home care is, how it impacts us, and what happens if families can’t access care. Legislators must change laws and policies to reprioritize home health care for their constituents.

What can you do? Join the movement. As individuals, we are responsible for telling our elected officials what is important to us and what those we elect to office should prioritize and champion. Advocating for home care is easy: Call your state and federal representatives and senators to request a meeting to discuss home care, or even simply send a letter, an email, or even a Facebook message or Tweet to let them know about what home care means to you. The Hearts for Home Care platform was specifically created to help members of the home care community learn about opportunities to get involved in home care advocacy. There are plenty of ways big and small to get involved, the most important thing is that we share our voices with one unified message: Home care is important to me, and it should be important to you too.

To learn more about Hearts for Home Care and to register, please visit our website, follow our Facebook and Twitter, or email us at advocacy@bayada.com today.