Families with Medically-Complex Loved Ones are Struggling in Maryland, and Across the Country

Hagerstown, MD mother Kimberley Lanham needs skilled nursing care to keep her son at home, but she—and many—are struggling to access the care they need.

Maryland families struggle to find enough home care nurses due to low state Medicaid reimbursement rates

We all know nurses as skilled, compassionate professionals that care for us when we are at our most sick and vulnerable. But for many families in Maryland and across the country, their care isn’t limited to a short hospital stay or recovery period. Instead, many individuals and families rely on skilled nursing care every day—and they aren’t getting it.

For individuals like Kimberley Lanham’s son Nathen, who was recently documented on Hagerstown, MD’s WVDM 25, skilled nursing means round-the-clock care. Nathen needs constant skilled medical attention in order to stay at home and grow up living in a safe and familiar environment with family and friends. The problem is, in many states, home care nurses simply aren’t available.

Why? Because home care nurses are often drawn to work in other settings and in surrounding states where they can earn more.

“Maryland’s nurses can make more in hospitals and skilled nursing facilities, and in nearly any surrounding state or Washington, DC. The care they’re providing requires a high level of skill that continues to increase. We need to pay these highly-skilled nurses the wages they deserve. With low Maryland Medicaid rates, we can’t. It’s not only affecting those nurses, but also those individuals that need their care to live with their families and out of residential institutions,” says BAYADA Director of Government Affairs Shannon Gahs.

Licensed Practical Nurse (LPN) Brenda White has been caring for Nathen for nearly 13 years and stays in home care despite knowing that she could make more elsewhere. “You’re doing everything for a patient that can’t do anything at all for themselves, and you wonder, why. Why are they getting paid more? They’re not doing half as what I’m doing,” she said.

In Maryland and in many other states, Medicaid reimbursement rates for home nursing services have fallen well below the cost of living, and home care providers can’t compete with hospitals and other settings that can pay higher wages.

“When nurses are being attracted to hospitals and nursing homes at the rate we are seeing, home care agencies simply can’t keep up. If the state were to allocate sufficient funding, then providers would be better able to recruit and retain the quality skilled nurses that they need, and families like Kimberley and Nathen’s wouldn’t be left in the lurch,” says Dawn Seek, Executive Director of the Maryland-National Capital Homecare Association (MNCHA).

Nathen has Cerebral Palsy and a seizure disorder that often requires emergency medicine, but his mother Kimberley can only access nursing coverage for a small fraction of the time that Nathen is authorized for. “Although I’m with a nursing agency, Optimal Health Care (OHC), they don’t have anyone to do the hours. Everyone is going to other facilities to work,” said Kimberley.

Hearts for Home Care members and other advocates are asking the state to increase the Medicaid reimbursement rate for home nursing care by 21% to put it back on track with wages that other settings and surrounding states can pay. However, currently, the state is only committed to a 3% increase. “It’s just not enough,” says Gahs. “While the state of Maryland has incrementally raised the rate by about 1-2% over the past decade, it has fallen way behind. 3% will not help us recruit and retain the nurses necessary to keep up with the demand, and families may even need to turn to other options. Providers, advocates, and families are looking for more.”

The good news is that, along with the Hagerstown coverage, the Baltimore Sun and Washington Post have also covered the growing crisis in Maryland over the past several months. Across the country, home care recipients, families, and advocates with the same issue are beginning to speak out to catch the ear of reporters and elected officials. While public awareness is increasing, moms like Kimberley are hoping that the governor’s and legislators’ eyes are also on the issue.

“It’s time for the state to do something. My son deserves to live at home, surrounded by his family and the things he loves. I’m already struggling. If I lost my nursing coverage even more, I may have to send him to a [nursing] home,” says Kimberley.

Join mothers like Kimberley and other advocates who are beginning to band their voices together in support of families’ increased access to home nursing care. To learn more about what you can do, contact advocacy@bayada.com today.

Hearts for Home Care Kicks Off 2019 with Two Heartfelt Visits with New Jersey Clients

Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.

Meeting Addy and Gloria


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

First, the team stopped by a BAYADA service office in Dover, NJ to meet the staff and learn about the struggles the office regularly faces in recruiting and retaining home health aides. Per staff member Helena Anton, challenges lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that “you can tell are put on this earth to care for others,” as Helena puts it.

“Smaller home health care companies can usually pay the caregiver more in wages because we put that money into benefits, training, and supplies. But the real problem is that Medicaid reimbursement rates are so low that these caregivers—no matter what company they work for—aren’t making enough. That’s why we need to advocate to make sure the state sees how low wages are impacting so many New Jerseyans that are able to live and their communities and thrive with home care,” added Helena.

After the discussion, the Hearts for Home Care advocates met home care client Addy and her aide Gloria. The crowd was 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 that 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. Addy recommitted to continuing to advocate for herself and for others who are impacted by home health care. “I want to share my message with legislators. It’s my way of giving back,” she said.

Lili and Emma Welcome Advocacy into Their Home


Photo: Lili and her nurse Barbara share a high five

Next, Dave, Tara, and Alisa traveled to Morristown to visit home care client Liliana “Lili” 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 service office team works hard to ensure that every one of Lili’s shifts are covered. She also shared about times when that 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.”

Lili benefits from New Jersey’s private duty nursing (PDN) program, which allows for children and adults with skilled care needs to live at home. Without this program, it is unlikely that Lili would have been able to grow up with her mom and graduate from school as she did. The PDN program’s rates need to be raised in order to better attract more nurses to home care, as most can currently make a higher wage delivering skilled care in a hospital or nursing home. One of Hearts for Home Care’s major advocacy goals for 2019 is to educate legislators on the need for a rate increase and to secure one on behalf of all New Jersey home care clients, families, and nurses.

Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that other families can receive the home care that they need too. In recent years, Emma has hosted state elected officials in her home. “Seeing our daily routine and how important it is for Lili to have a nurse at home is the most impactful way for an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili, but for those in the state who are struggling to get the nursing they need.”

“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 advocate Dave Totaro, who also serves as BAYADA’s chief government affairs officer.

There are plenty of ways to advocate, even from home! To find out ways that you can make an impact, contact us at advocacy@bayada.com. Together, we can share our voices to make 2019 the best year for home care yet.

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.

 

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