Hearts for Home Care has had a busy year, working to secure public and legislative awareness to home care challenges across the industry. Over the first half of 2021, the duo of Alisa Fox and Marissa Fogal has worked in conjunction with BAYADA’s Government Affairs office to urge legislators to recognize and address home care industry challenges through user-generated traditional media and social media coverage. Over the past three months, the Public Affairs team launched three state-wide media campaigns in Pennsylvania, New Jersey, and North Carolina focusing on the lack of state funding for both Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs, securing media coverage in major outlets like The Inquirer, NJ.com, and Spectrum News—all of which have garnered a total of 43,452,500 views.
Through their dedicated Hearts for Home Care social media efforts—which were formally added in September of last year—the Public Affairs team has been able to increase their audience reach to an additional 114,400 people over the three state-wide media campaigns, and these efforts only continue to grow.
BAYADA’s Public Affairs team, in conjunction with the Government Affairs office, continues to advocate for medically fragile individuals and bring legislative action to the issues these populations face. To stay informed on important home care industry news and media updates, please follow Hearts for Home Care Advocacy on Facebook and Twitter!
May is Better Speech and Hearing month and we would like to celebrate how our Hearts for Home Care advocates, Mark Steidl and Ari Anderson have never let their diagnoses stand in the way of making their voices heard. They are an inspiration to so many of their peers and fellow advocates ─ stopping at nothing to help and improve the lives of medically complex individuals who rely on home care to keep them cared for and safe.
Mark Steidl, from Pittsburgh, PA, doesn’t let communication challenges stop him from sharing his story with legislators. Diagnosed with Cerebral Palsy, he uses a Dynavox communication device to educate lawmakers on the importance of home care and the impact his home health aides and nurses have had on him. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.
Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days — days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.
In a conversation with Mark about his advocacy work, he said, “Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”
Ari Anderson, from Charlotte NC, truly understands the importance his home care nurses have had on his life, and because of this, dedicates his life to advocating for them and the other individuals who benefit from their care: “My nurses have provided me with life-sustaining care,” he says. “Most die from [Spinal muscular atrophy] SMA type 1 by age 2.” Ari was diagnosed with SMA Type I at 6 months of age. 38 years later, thanks to his dedicated nurses, new technologies, and medical therapies he is living his life healthy and independently at home.
With the help of his communication device, Ari has become a passionate advocate, inspiring all who meet him. His team of highly skilled nurses has also enabled him to graduate from high school, receive his bachelor’s degree, and earn a master’s certificate in technical writing. He now authors a column for SMA News Today and dedicates much of his time to advocating for home care and educating the public on its value. Most recently, using his communication device and eye-gazing technology, Ari brilliantly crafted a video he uses to educate North Carolina legislators about the impact of home nursing.
For Ari, skilled home care nursing has long-been a lifeline that has allowed him to grow up and thrive despite his prognosis. Most importantly, it has enabled him to be where he wants to be: at home.
Both Mark and Ari rely on skilled in-home caregivers to remain safe and cared for surrounded by their families at home. Like Mark says, the American healthcare system has changed and high-quality care at home is becoming the new norm as families and their loved ones choose home care over long-term care and nursing facilities. Lower costs of care and preventable hospitalizations are just two of the many reasons that home nursing care is optimal for the state and its residents.
However, skilled home nursing programs are state funded by Medicaid and the reimbursement rates given to providers are not enough to keep up with the competitive wages hospitals and long-term care facilities are able to offer. Without competitive wages, providers are struggling to attract qualified nurses to the industry, thus leaving medically complex individuals like Mark and Ari at risk without care. Our advocates are urging state legislators to invest in home care and raise reimbursement rates ─ as the future of our healthcare system is in the home.
Mark and Ari are super-advocates who are inspiring those around them to make their voices heard. For ways you can advocate for yourself, your loved ones, and your community at-large, please email firstname.lastname@example.org.
March is National Cerebral Palsy (CP), Traumatic Brain Injury (TBI), and Multiple Sclerosis (MS) Awareness month ─ Hearts for Home Care celebrates, educates, and spreads awareness about how home care benefits those diagnosed with these disabilities! To honor our advocates who share their voices on behalf of the many others living with these three diagnoses, Hearts for Home Care is rounding out March with a spotlight on five clients with CP, TBI, or MS.
Cerebral Palsy Awareness Month: Client Spotlights
Cerebral Palsy (CP) is the most common motor disability in a child. CP is a number of disorders of the developing brain that affects body movement, posture, and muscle coordination ─ 1 in 323 children have CP. However, because of home care, those affected are able to thrive at home independently with the help of their dedicated caregivers.
Haley Shiber is a 23-year-old artist, storyteller and advocate who lives with a form of Cerebral Palsy. Haley is wheelchair-bound and has used a communication device to speak since she was only a year old. However, her diagnosis has not held back her passion for advocacy! Haley worked with Delaware legislators throughout her young life to ensure that individuals with disabilities are empowered to live full and happy lives. Through Delaware’s Private Duty Nursing (PDN) program, Haley receives life-sustaining care from qualified nurses and home health aides that allow her to pursue her many passions including socializing with family and friends, gardening, reading the classics, riding her adaptive bicycle, and creating art.
Jenna Owen just turned 20 this past Friday, March 26! Happy Birthday Jenna! Jenna was born a twin with her sister Jade at only 28 weeks old, but sadly, Jade passed away in 2018. Jenna was diagnosed with Soto’s Syndrome and CP at a young age, so she is wheelchair-bound and relies on a speaking machine to communicate. She receives vital, in-home care from dedicated and qualified caregivers who allow her the independence and freedom to thrive at home. Jenna’s mother Phyleischa, is an avid supporter and advocate of home care. Most recently, Phyleischa sent a letter to Florida Governor, Ron DeSantis advocating for higher reimbursement rates for home care nurses as staffing shortages have become a serious and ongoing issue.
Davis is 27 years old and suffers from CP. He requires high-level of nursing care from a team of caregivers to keep him safe, comfortable, and thriving at-home. Due to Davis’s condition, he receives his medication and nutrition through a feeding tube and his nurses also must monitor his airway and medications. However, because of his dedicated nurses like Debbra, Davis still enjoys life surrounded by family and friends and watching his favorite TV shows! Davis’s dad, John: “I am grateful for the nursing services that BAYADA provides. The level of personal care Davis receives from the nurses is critical to his overall well-being. I can’t thank them enough.”
The CDC estimates over 1.7 million Americans suffer from a Traumatic Brain Injury (TBI) each year. About 80% are released from the hospital and go on to live mostly normal lives. But many suffer challenges for years to come and need care at-home to remain independent.
In June 2016, 22-year-old Matt Mayer suffered a tragic automobile accident, resulting in a Traumatic Brain Injury. After several months in various hospitals and over two years spent in a rehabilitation center, Matt was reunited with his family full-time in 2019. Due to the severity of Matt’s condition, he now requires a trach, feeding tube, and full team of specialized daytime and nighttime nurses in order to safely go about his daily life. As a result of Matt’s accident, he has been nonverbal and without most purposeful functions in each of his limbs for over 4 years.
Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body ─ and leads to symptoms such as numbness and tingling, muscle spasms, walking difficulties, and pain. MS is estimated to affect about one million people in the U.S.
John Williams is 76 years young and a military veteran. He served in Vietnam twice as Airborne in the 82nd Division ─ once from the draft and a second time as a volunteer. After retiring from 22 years of military service, he became a police officer and served his community for another 22 years. John was diagnosed with MS at 60 years of age, has dementia, and is now wheelchair-bound. However, he still living life to the fullest thanks to his compassionate home caregivers who help him live independently in the comfort of his home! John says he would do it all over again for his family and country.
John’s daughter Molly: “For my family, home care is very important. My dad has MS and dementia, but still wants to stay very independent. I live in Maryland and he lives in South Carolina, so home care gives us me the peace of mind that he is taken care of and can continue living his life with freedom. I’m very thankful for BAYADA and for his dedicated caregiver Arshala.”
Hearts for Home Care is a community of advocates that seek to share their voices and experiences to bring greater awareness of home care’s importance and impact on individuals with limitations and disabilities. Caregivers, family members, and individuals who are interested in advocating can contact us at email@example.com.
While much of the home health care community continued to reel from the onslaught of challenges faced from the COVID-19 pandemic, Hearts for Home Care advocate and BAYADA Home Health Care office director Cathy Slack has remained focused on the many positives. Namely, throughout the pandemic, she witnessed many caregivers, office staff, clients, and families advocate for better access to care, and also witnessed the state government’s response to hearing these voices.
One of the major wins that New Hampshire’s home care community saw as a result of their continued advocacy was the development of the Long-Term Care Stabilization Stipend Program (LTCSS), which served to borrow money from the state’s General Fund in order to offer stipends to essential healthcare staff to continue to work throughout the pandemic.
The state’s actions created an incredible domino effect that kept the positive changes coming. In Cathy’s office, coverage hours and the number of employed nurses both increased as RNs and LPNs transferred their passion for caregiving from their usual settings to the home care community. One such example is former full-time school nurse Laura Walker, who came to home care full-time after COVID suddenly halted normal school activity. Her transition was an immense positive for both Laura and her pediatric client, G, and G’s family. Laura’s care enabled them to feel security and peace-of-mind as G’s medical and academic routine suddenly flipped without warning.
“One day my medically fragile, intellectually disabled child went to school every day from 8 am to 3 pm where she was cared for by a nursing team and then came home to nursing services from the time she got off the bus until she went to bed. G’s school transferred to remote learning seamlessly, but how would my daughter respond to this new way of learning?” said G’s mom Michele. “My biggest concerns were: would she remain engaged without the school nurse keeping her safe, and how would she remain healthy at home with this gap in medical services? This is where Laura stepped up and went above and beyond.”
“These nurses put their own safety on the line to not stay home every day but to come out and care for our child. The stipend they earned through the state’s program was well deserved and I am grateful as a parent and a citizen of New Hampshire that the monetary recognition was given,” says Michele.
Michelle’s testimony is one of many that shows how medically-fragile families were given a lifeline through LTCSS during a time of uncertainty. Thank you to the many Hearts for Home Care Advocates, and to the State of New Hampshire, for making this lifeline available to the many residents that need home care to stay safe and healthy at home. To find out more about how Hearts for Home Care operates in New Hampshire or elsewhere, contact us at firstname.lastname@example.org.
Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors.
Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country.
A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own. For these reasons and many more, Shelby was the clear choice as the 2019 honoree.
“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”
The looming home health care crisis has recently been making headlines. From Home Health Care News to the New York Times, industry leaders, home health aides, clients, and family caregivers have been sharing the same message: As Medicaid rates continue to stagnate, home health aides and nurses can’t make a fair wage. As a result, the industry is facing a worker shortage and clients’ access to care is being significantly threatened across the country. Below, please find links to recent media coverage on the issue, all of which present compelling data that point to an impending home health care crisis for the most vulnerable and medically fragile populations.
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.
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
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 email@example.com
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
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
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
Lili and Emma Welcome Advocacy into Their Home
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
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 firstname.lastname@example.org. Together, we can
share our voices to make 2019 the best year for home care yet.
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.
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 crisisis 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.
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.
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.