Delaware’s capital—Dover—has its fair share of advocates: Nearly every day, residents and special interest groups from around the state gather in Legislative Hall to share their messages with decision makers. Recently, LaToya Martin—mother of 7-year-old Massiah Jones—made her challenges with the state’s availability of in-home nursing clear to not only local lawmakers, but with many people across the nation.
“For LaToya, advocacy is part of her everyday life.”
For LaToya, advocacy is part of her everyday life. Massiah is medically-fragile and suffers from a rare seizure disorder as a result of complications from Tuberous Sclerosis Complex (TSC). LaToya regularly serves as Massiah’s advocate in calls and appointments with doctors offices, insurance, and with the state of Delaware. Due to her dedication to her son’s health and his ability to live his best possible life, Massiah has been able to grow up and thrive safely at home with her, and with the help of in-home private duty nursing (PDN).
Challenges accessing nursing care
Recently, Massiah unfairly lost many of his authorized PDN hours due to the COVID virus’s effect on his ability to go to school. Always going any length to be Massiah’s voice—and the voice of many other medically-complex families around Delaware and the US—LaToya shared her powerful and unique story, citing her challenges with accessing nursing care and the inability of home health care providers to recruit and retain enough nurses due to the state’s low Medicaid reimbursement rates for Delaware’s PDN program. Her topmost priority is to show Dover’s decisionmakers why there needs to be a change in order to ensure the health and safety of Delaware’s most vulnerable children, and to empower other mothers and caregivers to unify their voices to do the same.
Hundreds of thousands of mothers, fathers, guardians, and other caregivers have a story to tell, but understandably, find it difficult to find the time and opportunity to share their voices. At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at email@example.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.
Mom Kateri Morton (right) was featured on ABC-47 with son Joey (left) to advocate for increased funding for DE’s PDN program
Hearts for Home Care super-advocate and super-mom Kateri Morton was recently featured on ABC-47 alongside her 8-year-old son Joey and his long-time nurse Diane to advocate for better state Medicaid reimbursement rates. To date, Delaware has not raised reimbursement rates for the state’s private duty nursing (PDN) program in 16 years. As funding for this important program falls behind rising costs of living and providing healthcare services, it’s families like Kateri’s that ultimately suffer.
“Most of our nurses have either left or stopped working in that area because of their own health factors. Or they had to go to different jobs for employment,” says Kateri. Home care agencies rely on the state’s reimbursement rate to provide nurses’ wages, supplies, training, and benefits. The 16-year stagnation has driven nurses to seek employment in hospitals and other facilities that can afford to pay nurses more in wages. As agencies struggle to recruit and retain enough caregivers, families experience more unfilled nursing shifts, sleepless nights, and struggles maintaining employment.
The COVID-19 pandemic has only exacerbated the issue, as staffing issues have limited nurses’ ability to care for high-risk clients and as precious personal protective equipment (PPE) has raised providers’ everyday costs. Nurse Diane says, “We’re struggling. We can’t retain our nurses, and with COVID going on, more and more families are being touched by home care nursing.”
The key to getting this issue on the top of legislators’ minds is to increase the number of affected family members who speak out and advocate on behalf of themselves and their children. Kateri’s network of DE moms and other guardians have shared their unique stories and struggles with one another, and with Delaware’s decision-makers. Recently, Kateri secured meetings with Delaware’s Medical Advisory Committee and the Department of Health and Social Services. “Advocating for Joey has empowered me. Without nursing, I can’t provide financially, physically, and emotionally to my fullest,” says Kateri. “As mothers of medically fragile children… when there is an opportunity to show an elected official how important this care is, that story paints a picture that a million facts and statistics cannot.”
Kateri recently created a Facebook group for DE families interested in advocacy. Check out her group and Hearts for Home Care to join others in advocacy opportunities today!
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.
On March 28, our annual North Carolina Hearts for Home Care Ambassador Symposium took place, where we provided tools and resources to our volunteer Ambassadors. The training focused on a variety of topics, including leading a legislative meeting and building relationships with lawmakers.
addition to special guests former Representative Bill Brawley, Senior Healthcare Campaign Director of MomsRising Felicia Burnett, Association for Home
& Hospice Care’s VP of Government Affairs Tracy Colvard, and Staff Attorney with Charlotte Center for Legal Advocacy
Louise Pocock, the shining star of the Symposium was client Dimpal, who inspired
all of our Ambassadors with her story of her journey into advocacy.
Beyond detailing the specific challenges she and her family face as a result of low state Medicaid reimbursement rates, Dimpal also described the ways in which home care and her nurses have changed her life and granted her independence:
“Without my nurses, I wouldn’t have been able to go to college and to live a full life. Without them, I’d likely be stuck in a hospital or a nursing home,” said Dimpal.
It was this gratitude for her nurses that propelled Dimpal to share her story and to advocate for others who rely on the state’s Private Duty Nursing (PDN) program to survive.
To hear more about Dimpal and the importance of advocacy, you can watch her full speech here. You can also read about her nursing care in the Gaston Gazette after a reporter came to her house to learn more about how her nurses impact her everyday life.
Special thanks to our Hearts for Home Care Ambassadors
for volunteering their time and talents advocating for our staff and clients!
Indira is at Jessie’s home every morning at 5:00 without fail. After taking on Jessie’s case and learning that she spent most of her time in bed, it became Indira’s mission to consistently challenge her to get out of bed and get active. Now, every morning before dawn, Jessie starts her morning with a smile, anxiously waiting for Indira to arrive.
While helping Jessie, who is 31 and diagnosed with cerebral palsy, with her activities of daily living, Indira also incorporates games, crafts, dancing, and singing. After a few short months with her beloved caregiver, Jessie now has a newfound confidence in her physical abilities and communication and language skills. Indira has quickly ingrained herself as part of Jessie’s family, whose loved ones call Indira “a Godsend.”
CHHA Michele has been with her client Marie since January of 2017, but you would think they have known each other forever. They share a special bond, and Marie even says that Michele is “like a daughter” to her. Marie lives alone, and if not for Michele’s visits, would be lonely and potential in danger. In addition to the personal care services that Michele provides to keep Marie safe and healthy, you see their bond shine when Michele frequently makes puzzles and quizzes to stimulate Marie’s mind—or as they like to call it, “using our noodles.”
Marie says that without Michele, she would not be fully able to take care of herself. But As soon as Marie arrives at Marie’s door, the time flies as Marie keeps her on her toes—both figuratively and literally. In addition to regularly stimulating Marie’s mind, Michele makes sure that Marie is safe and on balance as she moves around her apartment.
We need your help in supporting dedicated caregivers like Indira and Marie through advocacy. To find out ways you can get involved, email email@example.com today.
“Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” Two moms share how PDN impacts their families’ lives
This year, our major focus in New Jersey is to fight for higher reimbursement rates for New Jersey’s Private Duty Nursing (PDN) program. One of the most impactful ways to influence legislators is to engage clients and families into advocacy through testimony, which is delivered by these clients to legislators who are in key positions to influence legislators. Below, find powerful excerpts from two moms who support a PDN increase on behalf of their children and their families.
Dana I. – Mother to
BAYADA Client, Abi
“There is truly no way to explain on how much caring for a medically
fragile child impacts a family. Every errand, every event, every move of your
day becomes centered around their care. Abi has been authorized for skilled
nursing care by our insurance company, yet she still has five or more unfilled
shifts every week.
Lapses in nursing
coverage put tremendous pressure on our entire family—we often have to miss work
and stay home to provide for her care, putting strain on the family finances. Lost
nursing hours also means the entire focus of our time becomes all about our
medically-fragile child, and the balance between the other children becomes
strained and we often miss beloved activities or events.
Abi is not a child that
we can just hire a babysitter for. Her high level of care and constant need for
monitoring makes it impossible to have any sense of normalcy without capable
& consistent nursing support. There are simply not enough nurses in home
care to cover all of the needs of my family and the needs of many, many others.
is not the answer. My precious daughter brings many challenges to our home, but
it would be heartbreaking to have to put her in an institution for lack of
nursing support. So here I am prayerfully putting a name and a face to those of
you who have the power to make a real difference in this area. Competitive
wages would bring stability to her home care nursing and allow our family and
families like us to stay together and thrive.” -Dana Insley, Abi’s mom
Emma K. – Mother to
BAYADA client, Lili
“While I count my
blessings that we have the right nursing team in place, I often think of the
families across the state that can’t fill their nursing shifts. It takes me
back to the last time our scheduled nurse had a family emergency and there was
no other nurse available to cover her shift. As a single mother of a
medically-complex, ambulatory child with no family in the area, you can imagine how it plays out when there isn’t a nurse available for
Lili: I have to call out of work myself and cancel any commitments I’ve made
for the day. I can’t get the groceries that I was planning to pick up or even
do a load of laundry since I can’t leave Lili alone for even a minute. And I
have to again plan to do these things during the times I’m expecting to have a
nurse to stay with Lili because I can’t get them done otherwise.
We as a society have developed a system of reliability for our communities: Teachers help children learn, police keep our streets safe, ER doctors save lives, and pharmacists fill our prescriptions. But we are failing in keeping home nursing readily available. Just as a prescription, Lili’s care is prescribed by her doctor and authorized by the state. But we cannot rely on its availability. I hope that our state decision makers prioritize home care, if solely for the fact that it keeps children like Liliana at home and keeps families together. Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” -Emma K., Liliana’s mom
Dana and Emma exemplify the power of sharing your story. If you’d like to highlight the powerful story of your experience in a home care office, or the story of a client, their loved one, or a caregiver, contact firstname.lastname@example.org.
BAYADA’s Government Affairs Office (GAO) is proud to join with fellow advocates like you to continue to advocate for better wages for our caregivers and increased access to home health care for the tens of thousands of New Jersey residents that rely on this care to stay safe and independent at home. Thank you to our many employees, clients, and families who have advocated on behalf of yourselves, your loved ones, your staff, and your clients regarding our two major 2019 issues:
1. Personal Care Assistant (PCA) Program – Increased Reimbursements for Increased HHA Wages
GAO is working in collaboration with other providers and the New
Jersey Home Care and Hospice Association to educate our legislators on the
importance of adequate funding for the
Personal Care Assistant (PCA) program.This is especially important as the State recently mandated an increased
minimum wage. BAYADA supports a wage increase for all of our home health aides
(HHAs) for the incredible, lifechanging work they do—but additional advocacy is
necessary so state legislators understand the importance of proportional PCA
program funding so that providers like BAYADA can comply with the new mandate
and stay sustainable.
Click here to check out how HHA Indira helps her client Jessie stay at home, and about CHHA Michele’s special bond with her client Marie. We are hopeful that our advocacy efforts can lead to a fairer wage for aides like Indira and Michele, as well as better recruitment and retention rates across the ACSP practice so that all New Jersey residents who need this important service can access it. To find out how you can get involved, email email@example.com today.
GAO is working with the New Jersey Home Care and Hospice
Association to educate our legislators on the importance of adequate funding for the Private Duty Nursing (PDN) program.
Current PDN program funding makes it difficult for providers like BAYADA to
recruit and retain the nurses necessary to care for New Jersey’s most medically
complex and residents. This difficulty results in significant access to care
issues, as only 85% of scheduled hours are currently filled, and
vulnerable New Jersians are going without the care they need to stay safe and healthy
We are lucky to have home care supporters in the legislature who understand the struggles our caregivers and skilled nursing clients face—Recently, Bill S1733/A4575, which proposes a $10 per hour increase for RN and LPN home care services, was introduced. In addition to the increase, this bill also seeks to establish a “rate floor” so that managed Medicaid providers reimburse no less than the state fee-for-service rate for in-home skilled nursing services.
But we need your help in getting this bill to the finish line. Soon, this bill will be up for a hearing, and clients’ and employees’ testimony make the most impact in showing legislators the challenges that arise from inadequate funding and the associated access-to-care issues.
Click here to read excerpts from two clients’ testimonies regarding the importance of PDN in their lives. Powerful stories like the ones Dana and Emma share help our advocacy efforts and show legislators the impact of home care in making a real difference in vulnerable New Jersey residents’ lives. To find out how you can get involved, email firstname.lastname@example.org today.
year was Rhode Island’s first year with a full-time Government Affairs Office
(GAO) program—And what a year it was. Together with our Rhode Island office
staff, field staff, clients, and families, we were able to band our voices
together in advocacy to achieve monumental increases on behalf of our staff and
result of our efforts, the State increased Medicaid rates for certified nursing
assitants (CNAs), and to the State’s private duty nursing (PDN) program. These
increases allow BAYADA to raise field workers’ wages and better compete for a
larger segment of the workforce. As a result, BAYADA is in a better position to
recruit and retain the staff necessary to keep up with demand, and Rhode
Islanders are poised to see increased access to reliable, consistent care.
work is far from done. BAYADA’s GAO, along with the continued advocacy of so
many of you, is focusing on four key issues at this time:
Priority #1: Continued COLa Adjustments
2018 increases also included a first-in-the-nation Cost of Living adjustment
(COLa), which will provide additional increases to Medicaid rates
every year based on the Bureau of Labor Statistics’ Cost of Medical Services
annual adjustment. Our first majority priority
for 2019 is to ensure that the state keeps its commitment to COLa and
includes it in the state budget each year. If passed, this year’s COLa will add
an additional 1.9% to current rates to ensure they remain consistent with
actual, determined cost of living increases. In March, GAO director Ashley Sadlier testified in support of this
important adjustment in front of the House and Senate Finance Committees alongside
other supporters. At this time, we see no opposition and continue to monitor COLa
through the state’s budget process.
Priority #2: High Acuity
Skilled Nursing Rate Modifier
issue that Rhode Island’s skilled nursing offices often face is recruiting the
specialty-trained nurses necessary for more complex, high acuity clients. Luckily,
home care supporters in the House agree. Recently, representatives Patricia Serpa and Mia Ackerman introduced House Bill
5621, which calls for a 10% increase to Medicaid reimbursement rates for nursing
services provided to clients with tracheostomies and/or ventilators. The bill
has taken the next step in the legislative process by being referred to the
House Finance Committee. Currently, GAO is awaiting a date for the bill to be heard.
If you, a loved one, or your staff or clients would benefit from such a bill,
please reach out to email@example.com!
We hope to have a strong showing of support at the state house when the bill
moves forward and we would love your help.
Priority #3: Helping Pediatric Clients
Transition to Adult Clients
BAYADA has collaborated
with the Rhode Island Partnership for Home Care (RIPHC) to advocate for
additional resources for pediatric clients currently receiving home nursing
services who are transitioning to adult services. Currently, clients that are transitioning face many challenges
navigating the system, especially when determining what programs and
services they are eligible for. BAYADA and the Partnership have met with the
Executive Office of Health and Human Services (EOHHS), the Department of
Behavioral Healthcare, and Developmental Disabilities and Hospitals (BHDDH) and
Managed Medicaid, to create plans on how
to streamline the process for this population and expand eligibility options
for families. To date, several BAYADA clients have transitioned to a more
appropriate program for the level of care that they require. GAO looks forward
to continuing to help our partners at the State to develop plans to ensure
parents, caregivers, caseworkers, schools, and agencies are equipped with the
resources necessary to assist families in navigating the challenges of
transitioning from pediatric to adult home care services.
Priority #4: Continued
2018 brought success to Rhode Island’s home care front, GAO continues to build
relationships to ensure that legislators and regulators understand the
importance of home care to so many of Rhode Island’s families, and support
policies that ensure its accesibility. Recently, alongside the Partnership, GAO
director Ashley Sadlier met with Rep. Joseph McNamara, the Chairman of the
Rhode Island House of Representatives Committee on Health, Education and
Welfare. Rep. McNamara is in a key role to influence legislation, and BAYADA looks
forward to continuing to be a valuable partner to Chairman McNamara—and many
other key legislators and regulators—on issues such as employee training and
supervision, access to care, and challenges that providers, employees, and
families see within the home care industry.
Delaware Ambassadors and employees have set participation records
at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day
and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).
The first, the Delaware Association for Home and Community Care
(DAHCC) Legislative Day on March 13, had a
record attendance of more than 50 attendees! 41 registered for the event,
which would have been a record itself, but the larger-than-expected turnout was
an impressive surprise. Seven providers,
including BAYADA, were represented, and the crowd included six families advocating for themselves
and their nurses. Everyone wore their own company’s branded gear but united
behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.”
Legislators heard our message was heard loud and clear.
In another first for Delaware, two legislators spoke in support
of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it
even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House
Majority Leader, Representative Valerie
Longhurst. Both spoke passionately about the importance of home care in our
communities and the need to increase reimbursement to ensure that this vital
care is available to those who rely on it.
They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.
A week later, on March 20, Delaware advocates broke another
record when 15 members of our community
testified before the powerful Joint Finance Committee (JFC) in support of
increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott,
Danielle Myers, Shannon Gahs, Dave Totaroand representatives
from Epic/Aveanna and Maxim/Aveanna. Client Haley Shiber was unable to attend in
person but sent a powerful testimony video to the JFC members before the
hearing. The Joint Finance Committee hears budget requests from all state
agencies and testimony from the public before making an annual budget
recommendation to the full General Assembly. The General Assembly frequently
follows the majority of those recommendations. Members of the committee told
BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!
The industry-wide coalition led by BAYADA and DAHCC is pushing
the Delaware legislature for a 21%
increase in the Medicaid home care RN and LPN rates, which would impact our
Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home
care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less
than Medicaid fee-for-service, these new higher rates would have to be paid not
only for “straight Medicaid” hours but also those funded by managed care in
Delaware. These two rates currently remain at their 2006 levels, harming our
ability to recruit and retain the highly-skilled RNs and LPNs that are so
important to the lives and welfare of our clients.
Thank you to our advocates
who turned out and made sure that Delaware’s decision makers know that we are
here to advocate on behalf of our staff and clients, and that home care makes a
difference in the lives of so many Delawareans!
Great things happen when we advocate together! After years of
advocacy from BAYADA, our partners, and many parents and home care employees, the
Maryland General Assembly recently passed two pieces of legislation that collectively will increase all Medicaid
home and community-based services reimbursement rates by more than 30% over
the next six years. Though initially met with opposition from Governor Larry Hogan,
the Maryland General Assembly heard our voices and overwhelmingly voted to
override his veto of one of the bills.
The first bill, the state’s annual budget, provides a rate
increase of 3% that will go into effect July 1, 2019. The second bill, also
effective July 1, 2019, contains an amendment which will increase reimbursement
rates by 4% each year between July 1, 2020 and July 1, 2025.
Currently, Marylanders who rely on in-home nursing care have only
83% of their authorized hours filled, meaning that families struggle to fill
their medically complex loved ones’ skilled home nursing care nearly 20% of the
time! We have found that Medicaid rates have stagnated below the cost of living
and below wages seen in other settings—such as hospitals and facilities—and surrounding
states—and that families were struggling to fill these hours. We are hopeful that
these access-to-care issues will be alleviated as providers will be able to
recruit and retain nurses within the home care industry, and that more of Maryland’s
most medically complex will be able to stay safe where they want to be—in their own homes.
This was a true team effort led by BAYADA and the Maryland National-Capital Area Home Care Association (MNCHA) and including MNCHA member providers, several individual families, parent advocacy organizations and disease-specific advocacy organizations. Special thanks to JoAnn Saxby, Patrick O’Malley, Eddie Dyer, Patty Watson, and Susan Ingallswho all played important parts in making this happen and to BAYADA Delaware employees Mandy Brady, Kristyn Kelsch, and Taylor Kosinski who went above and beyond to advocate in their sister state. Mike Sokoloski, Tara Montague, and Nicole Onofrio were instrumental in supporting two Town Halls and Legislative Day, and Alisa Fox coordinated timely articles in The Baltimore Sun, The Washington Post, and on WDVM TV in Western Maryland. Maggie Tracy managed countless logistical hurdles and supported direct lobbying and grassroots efforts.
Thank you to everyone who played a role in this major achievement! Advocacy cannot succeed if only one voice is heard, and your advocacy has contributed to the well-being of so many Marylanders in need of home care.
For more information on this increase, or how you can get involved in advocacy in Maryland, please contact Shannon Gahs at firstname.lastname@example.org.