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

GUEST 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, Georgia has not increased its reimbursement rate for Private Duty Nursing (PDN) services for the state’s adult population since 2001—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 New York Times, Boston Globe,  Baltimore Sun, and in local news outlets in South Carolina, 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.

Using Social Media as an Advocacy Tool

Every day, BAYADA employees, clients, and families use social media to connect with one another, keep in touch with distant friends and relatives, and learn about news and events near and far. But social media has evolved far past the traditional definition of “social.” In today’s world, social media gives the home care community the opportunity to spread public awareness about home care’s impact and the opportunity to more conveniently advocate for better home care laws and policies.

Advocacy simply means communicating to elected officials what home care means to you and how it impacts your everyday life. Because our state and federal lawmakers make decisions that affect home care providers’ ability to recruit and retain quality caregivers to serve our clients and their families, it is important that they are able to connect home care to their constituents’ names and faces. Social media outlets, particularly Facebook and Twitter, allow for members of the home care community to advocate from the convenience of their home or office.

Sharing a video of a family expressing the value that their in-home nurse or aide brings to them and their loved ones, for example, enables other social media users to understand how home care impacts them, their neighbors, and thousands of people across the country. Our Hearts for Home Care platform is designed to share videos, quotes, photos, news, and advocacy opportunities with elected officials and the community at-large.

In addition to this platform, it’s important that members of the home care community—including staff, clients, and family members—are aware of the power they hold at their own fingertips. Getting involved in advocacy through social media is easy, and the more we share our voices the better we can be heard. In addition to following our Facebook and Twitter, you can tell your elected officials what home care means to you in three easy steps:

  1. Find your elected officials on Hearts for Home Care’s Find My Legislators page
  2. Like and follow them on social media (the links are right on the page!)
  3. Connect with them regularly: Share Hearts for Home Care’s posts with your legislators, post on their pages about what home care means to you, or message them to ask them about meeting them in-person to talk about the value of home care. You’ll find that their pages will also give you information about news and events like Senior Expos and Town Halls that may be valuable for you, your staff, or your clients.

Social media not only brings people who value home health care together, but it shows those who have not yet needed home health care its value and necessity. It gives our industry a face and a voice and allow our representatives and senators to see that it affects real people in their communities, and it shows our elected officials that our friends and neighbors with special medical needs should be able to receive the care they need in the place the feel the safest and most comfortable–at home. To learn more about how you can be a voice for home care, join Hearts for Home Care today.

Home Visits in North and South Carolina Show Legislators Importance of Home Care

North and South Carolina legislators visit with home care clients to discuss Medicaid reimbursement rates and other issues related to the home care industry
Left: Former state senator and current candidate for North Carolina’s 119th district Joe Sam Queen discusses home care with Mike G. Right: South Carolina representative Richard Yow visits Mitchell H. and his family to learn about the benefits of home care in keeping families together.

The southern heat isn’t stopping our advocates from going above and beyond for home care. Recently, Hearts for Home Care has seen an influx of activity from our home care employee advocates, who have been scheduling meetings with legislators, coordinating in-office legislative roundtables, and most importantly, demonstrating home care’s impact by hosting home visits, in which legislators come in to a client’s home. 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 their constituents receive services. When our state decisionmakers see the impact of home care on local residents, they are more likely to support policies that benefit the home care industry.

Last month, BAYADA Home Health Care’s Rock Hill Skilled Nursing Office hosted South Carolina state Representative Richard Yow, who visited his constituent Mitchell H. in Lancaster, SC. Mitchell relies on home care to stay at him with his mother, Tammy, and his son, Allen. Seeing how home care allows Mitchell to watch his son grow and thrive impacted Rep. Yow, who stated, “Spending time with Mitchell’s family puts a different perspective on the state’s home care situation. Its past time that we in South Carolina hold insurance companies accountable and do what we can do to ensure that families wanting to take care of their loved ones at home have the necessary equipment and support to do so.” Rep. Yow even assisted the family in securing a spot at a local summer camp!

Last week, Lee Dobson and service office director Taylor McClure led former senator and current candidate for North Carolina’s 119th district Joe Sam Queen on a visit to client Mike G. Mike, who lives alone with no immediate family in the area, relies on his certified nursing assistant (CNA) Kassie to stay at home. Kassie, who has been with Mike since 2016, said, “Mike has become like family to me. I’m glad I can help him stay as independent as possible.” Queen stated, “It is clear serving folks at their home and out of higher-cost settings is better for the individual and better for North Carolina. Access to health care, including Medicaid, is critical as our state grapples with rising healthcare costs. We should be using our tax dollars wisely to help our citizens while creating quality local jobs and providing that much needed care.”

Hearts for Home Care’s home visit program has been recognized by our federal partners for its effectiveness in demonstrating the impact home care has to state legislators. Recently, the Partnership for Quality Home Health (PQHH), asked us to begin a federal home visit campaign to further educate our representatives and senators in Congress on home care’s effectiveness in keeping residents safe and independent at home. In addition to the above mentioned home visits, Hearts for Home Care advocates have conducted additional home visits in North and South Carolina, and home visits in New Jersey, Pennsylvania, and Rhode Island.

It is clear how impactful home visits can be in influencing our legislators’ perception of home care. To learn about how you can get involved in advocacy and how you can plan a home visit, email advocacy@bayada.com today!

Advocate Spotlight: Christine Detweiler is a Voice for Her Pediatric Client Gideon

From home visit to house bill: Christine’s advocacy efforts lead to a bill introduction!

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

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 recently introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. As of today, the Spinal Muscular Atrophy Bill (HB 2484) has been introduced and placed in the Health Committee for consideration. Representative Quinn reached out to her House colleagues and asked for co-sponsors for the important resolution and to bring awareness to this condition and to assist families across Pennsylvania with early intervention. We are looking forward to this bill passing through committee once legislators are back in Harrisburg.

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!

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.

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!

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.

Prioritize Home Care for Special Needs Families Like Ours

An op-ed by mom and Hearts for Home Care advocate Haley Keisler

South Carolina family with medically complex children
Our family relies on in-home caregivers to keep Matthew and Maxwell safe and comfortable at home

“I’m sorry. I love caring for your sons, but I have to leave this job so I can provide for my own family.” It’s a message I’ve heard far too many times in the past six years. While home care provides our family with the ability to live together under one roof, the lack of available, quality in-home caregivers in South Carolina threatens our access to care.

Our boys Maxwell and Matthew both have Pelizaeus-Merzbacher’s disease, which means they are wheelchair-bound, unable to stand, sit, or walk on their own, and they must be fed, clothed, and bathed by a capable adult, which makes caring for them more complex than simply hiring a babysitter.

The home care services we receive through South Carolina’s Medicaid program enable me and my husband to get the boys to doctors’ appointments, sleep for more than a few hours at a time, and work outside the home providing for our family while our boys receive the specialized care they need.

A career in home care requires compassion. It takes a special person to do this job that literally keeps families together. If we didn’t have this support, we would not be able to care for our sons on our own and they would have to be placed in an institutional setting. However, there comes a time when all of the compassion in the world can’t pay the bills. If a home health aide can get paid more in retail or fast food, why would they choose a lower-paying job in my home that can be more physically and mentally draining?

They need to be able to make enough to support themselves and their families too. I would not expect the most compassionate and capable aide to stay in a position that forces them into missing their next mortgage payment or rendering them unable to feed their own family.

No matter what level of compassion a person has, fewer people want to be aides because the pay isn’t enough to match the effort and stress of the job. Our current caregiver is an amazing and trustworthy person.  I can’t put into words how much this eases my and my husband’s daily anxieties about our sons’ care and truly makes our marriage, our parenting, and our daily lives much more consistent and predictable. But if something comes up and she cannot come to our home one day, it sets off a series of complications. Likely, I have to call out of my job too because there just aren’t enough aides available for providers to staff call-out cases. This impacts my job and threatens our ability to complete the day-to-day necessities that supporting a family requires, including taking the boys to their doctors’ appointments, grocery shopping, and caring for myself.

What I’m trying to say is, we as a society do not match up the value of caregivers and what we pay them. For many families like ours, these caregivers provide a lifeline that allows us to keep our family together. With South Carolina’s Medicaid reimbursement rates for these services being where they are, there’s no way that home care providers can compete with the Walmarts and the Chick-Fil-As of the world.

I wish all caretakers were paid a million dollars, if only so that the industry can attract more compassionate, quality aides to the positions. Though this isn’t realistic, it is not enough to simply cross our fingers and hope that enough compassionate caregivers stick around to care for our vulnerable populations—not only special needs children, but also the elderly to keep them in their communities and out of nursing homes. We need to adjust our priorities to value home caregivers for what they provide to society at-large as well as the families who depend on it.

-Haley Keisler
Lexington, SC

Meet the Keislers: How Home Care Keeps Families Together

Maxwell, Brandon, Matthew, and Haley Keisler rely on home care to keep Maxwell and Matthew safe at home.
Maxwell, Brandon, Matthew, and Haley Keisler rely on home care to keep Maxwell and Matthew safe at home.

Meet the Keislers! Brandon and Haley are just like many parents—they value quality time together, they care about who is around their children and how they are learning, and their sons are their number one priority. But one thing sets the Keislers apart from most families: Their sons both have Pelizaeus-Merzbacher’s disease (PMD), and they rely on home care to keep Maxwell and and Matthew safe and comfortable, together at home as one family. But the shortage of home health workers has affected the Keislers and their sons’ care over the past six years.

The Keisler sons are able to stay at home because they qualify for in-home services through South Carolina’s Medicaid waiver programs. They are wheelchair-bound, unable to stand, sit, or walk on their own, and they must be fed, clothed, and bathed by a capable adult. Their personal care aides help them with activities of daily living (ADLs) such as bathing, toileting, and dressing.

“Home care enables our family to stay together, and enables us all to maintain normal lives despite our unique conditions,” said father Brandon. “Without our aides, we would not be able to work outside of the home to provide for our sons, and we certainly would not be given the flexibility to be able to go grocery shopping, take them to their doctor’s appointments, or maintain a normal sleep schedule. These kids are incredible, and the least they deserve is to grow up at home as a family like other kids.”

Max and Matthew’s mom, Haley, points to pitfalls that the home care industry faces. “If an aide calls out, that means one of us has to call out from work that day. There aren’t enough quality aides to keep up with the demand,” she said. “Although Max and Matt have physical limitations, mentally they are normal like you and me. They need to be stimulated so that they can continue to learn and grow. We need aides who are truly compassinate and caring. But it’s hard to find quality aides because they are constantly leaving to go to better paying jobs. In the past six years, many of our caregivers have left, and this creates a revolving door for our family and leaves gaps in our coverage.

Brandon and Haley have experienced multiple agencies discharging their sons from services due to lack of staff. “We are finding it more difficult to find home care agencies that provide personal care services to the pediatric population.  From what we have been told, it’s mostly due to the state’s low reimbursement rates,” explained Brandon.

The issues lies in South Carolina’s current reimbursement rate for Medicaid personal care services. The state reimburseses providers for their home care services, and that reimbursement rate must cover aides’ wages, training, supplies, and other overhead costs. Though the bulk of the reimbursement rate goes directly to the aide’s wage, it is not enough to compete with fast food and retail settings, where their starting minimum wages often vastly exceed reimbursement rates. If more and more aides continue to leave the profession, South Carolinians and others like the Keislers throughout the country will not have access to the in-home care that keeps their family together and keeps their sons out of institutional settings.

“Currently, we have a great personal care aide who loves what she does, loves our boys, and rarely calls out.  When we leave the house, we know the boys are in good hands, and that allows me to be able to focus at my job. We know she does it for all the right reasons, but also needs to pay her mortgage and care for her family. We are hopeful our lawmakers can see the benefits of having personal care aides in the home. We feel she deserves to make a million dollars!  Although we know that is not realistic, we need help from our legislators to keep her in our home.  An increase in the reimbursement rate for personal care services will allow her and many others to do what she loves to do–care for our boys when we are not there to be able to,” said Haley as Brandon nodded in agreement.

This issue is so important for the Keislers because they know their sons will need personal care services throughout their lives, and they have even begun advocating for their issues. They recently joined the South Carolina Home Care & Hospice Association at their annual Legislative Day and brought Maxwell and Matthew along to their meetings with Representatives Jimmy Bales, Terry Alexander, and Roger Kirby. When asked if he had a message for legislators, Brandon said, “What a special day for all of us!  We truly thank you all for what you do. We know being a lawmaker is also not the easiest job, but supporting South Carolina’s personal care aides and supporting home care truly makes a huge different in our and many others lives.”

To support home care and prioritize it over institutional care, legislators in South Carolina and in other states can support a Medicaid reimbursement rate increase for personal care and skilled nursing in-home services. Increased rates allow providers to pay caregivers higher wages, which enables them to recruit and retain more quality caregivers and prevent workers from leaving the profession for retail and fast food settings. This in turn will allow more individuals and families to access home health care and remain in their homes and communities.

To read more from Haley’s perspective, read her op-ed. ABC Columbia recently covered the Keislers’ story. Click here to view the piece. 

To learn more about how home care, how it benefits your constituents, and how providers struggle to recruit and retain quality caregivers due to low reimbursement rates, please email advocacy@bayada.com