Celebrating and Recognizing Individuals with CP, TBI, & MS

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 painting with her long-time nurse, Jen Saulsbury.

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.

Fun fact about Jenna: She loves The Wiggles, all kinds of Disney music, and the mall! She also eats mashed potatoes and gravy just about every day!

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 with his dedicated nurse and the 2017 LPN National Hero, Debbra.

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.”

Traumatic Brain Injury Awareness Month: Client Spotlight

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 Awareness Month: Client Spotlight

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 advocacy@bayada.com.

Together, we can leverage our voices to tell state and federal decision-makers, “I care about home care, and you should too.”

Patient Recognition Week: February 1-7

In honor of Patient Recognition Week, Hearts for Home Care sends a warm and heartfelt thank you to the many patients and families that advocate every day!

Hearts for Home Care cannot be effective in changing states’ policies and program funding mechanisms without your stories. When those who are affected by home care—clients, their families, and their caregivers—share unique and personal stories, it creates real change. These stories illustrate to legislators how impactful home care is to their constituents, and why it is important that they create new laws and amend existing ones to maximize access to care for residents who need it most.

Advocating for yourself or for a loved one is rewarding. Sharing your voice can mean the difference between a legislator being unaware of home care’s impact, to their proactive support of home care. In honor of Patient Recognition Week, below are several real life examples of clients in advocacy action. Home care patients and families make all the difference. Thank you for all you do!

Delaware mom Kateri Morton has advocated for her son Joey in many ways, from being featured on local news station WMDT (47 ABC) to share how low state Medicaid rates have affected her ability to get all of Joey’s skilled nursing hours covered—to organizing a group of active moms to testify at upcoming state hearings on the issue! Not only have legislators heard her voice loud and clear, but now other DE moms have heard her and thereby gained the confidence needed to share their stories too.

Kateri’s advocacy on behalf of her son Joey has enabled state decision makers to hear about the importance of in-home nursing through many mediums—including print and broadcast media.

Durham, North Carolina’s Mr. Mendenhall is a 90-year-old armed service Veteran with Dementia. Due to his diagnosis and the accompanying physical limitations, he needs constant supervision and support—including assistance with everyday activities, such as dressing, eating, bathing, toileting, and moving around. Mr. Mendenhall lives at home with his wife, Margarite, of more than 50 years. She does her best to take care of her husband, despite her own medical challenges and limitations. While they both are frail, they are happy to be at home and together. They are able to stay at home through the home health aide services that he receives from his home health aide, Kashina, who comes in two hours per day to care for Mr. Mendenhall. Her caregiving services enables Mr. Mendenhall to remain as mobile as possible, as well as remain in his community.

Mr. Mendenhall (left) meets NC Rep. Hawkins while his wife looks on. They want to do what they can in order to show state and federal lawmakers how important home care is.

While you’d think that their advocacy work is limited, the couple recently participated in a home visit in which NC Rep. Zack Hawkins. This enabled Rep. Hawkins to see firsthand how home health aides help keep constituents costly and potentially infectious facilities such as hospitals and nursing homes. After Rep. Hawkins’s visit, he helped the family connect with the VA to address challenges they were facing. Rep. Hawkins said, “As a lawmaker, it is important we support seniors. To ensure they can live a full life at home. Care at home is an important option, less expensive, and where people want to be.”

LaToya Martin is a super-mom who fearlessly advocates for her son Massiah. When she wrote an opinion piece for the Delaware Post, her powerful message led to many state legislators learning about how home care affects real people across the state. That message resonated not only with lawmakers, but also with moms and home care advocates from all parts of the US. Scary Mommy—one of the largest online resources for moms—even reshared her piece to the hundreds of thousands of readers that regularly access their site!

Mark Steidl is a disability rights advocate from PA to DC and beyond!

Mark Steidl of Pittsburgh, PA doesn’t let communication challenges stop him from sharing his voice. Diagnosed with Cerebral Palsy, he uses a Dynavox to communicate the importance of home care and the impact of his home health aides with his legislators! 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, “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.”

NJ mom Dana Insley testifies at a public hearing in Trenton.
Dana (second from right) is pictured with her family, including daughter Abi (second from left in white & pink)

New Jersey mom Dana Insley steps up to the plate for any opportunity to advocate on behalf of her beloved daughter, Abi. After 2+ years of fighting, Dana and her husband adopted Abi, who needs skilled home nursing to be able to live a safe, healthy life alongside her siblings and loved ones at home. When she isn’t taking care of her family, Dana thinks of many ways to advocate. She has testified at many state hearings for increased home care funding, regularly writes opinion pieces to share with news sources and legislators, and always makes time to share her family’s home care experience with the public. Abi didn’t only get a second chance at life, but she also got a mom whose voice advocates on behalf of all New Jersey children and families with special needs.

This is a mere glimpse into the wide world of patient advocacy. Thank you to the many, many home care clients and families that take the time to advocate in a variety of ways. From a brief video meeting with a legislator, to a home visit with your medically-fragile loved one, to writing to your local paper, sharing your story helps lawmakers see the importance of in-home care, and empowers you to act as a voice for the many who are unable to advocate for themselves. We recognize you and appreciate you. To get involved in advocacy in your community, contact advocacy@bayada.com today!

DE Mom LaToya Martin Makes Headlines to Advocate for Son Massiah

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.”

LaToya’s opinion piece was published in USA Today Network’s Delaware Online, and was also picked up by Scary Mommy—a powerful website for millions of women that coins itself “one of the largest, most influential and trusted sources of entertainment and information for millennial moms online.”

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.

Advocacy Works:

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 advocacy@bayada.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.

Advocacy in Delaware: Super-mom Kateri Morton Advocates on ABC and in Dover

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.”

One of the most compelling aspects of the reimbursement rate issue in Delaware and across the US is that increasing families’ access to home care would save state Medicaid programs significant funding dollars that currently go toward care that residents receive in ERs, hospitals, and other facilities.

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!

In New Hampshire, Home Care Advocacy Brings Results

BAYADA Home Health Care’s pediatric client G (Gina) with her her nurse Laura.

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 advocacy@bayada.com.

North Carolina Legislative Day 2019 Photo Gallery

Advocates in Action: Dimpal Patel Inspires NC Ambassadors at Ambassador Symposium

Client Dimpal P. inspires Ambassadors during North Carolina’s Ambassador Symposium

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. 

In 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!

To learn about ways you can get involved in advocacy, email advocacy@bayada.com today

Client Spotlight: Read About our NJ Clients and their Beloved Caregivers

ACSP Clients Jessie and Marie, and the impact their caregivers Indira and Marie make in their lives

HHA Indira (right) has made monumental changes in Jessie’s life

GAO and many other advocates are fighting for increased funding for New Jersey’s Personal Care Assistant (PCA) program. This program enables thousands of vulnerable New Jersey residents stay at home, and we are hoping that our advocacy efforts lead to fairer wages for caregivers like Indira and Michele.

Indira & Jessie

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.”

Marie & Michele

CHHA Michele (left) is “like a daughter” to her beloved client, Marie

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 advocacy@bayada.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

PDN services help Abi stay safe and healthy, and helps her whole family stay together at home

“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.

Institutionalized care 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

Client Lili (left) loves her compassionate and reliable nurse Barbara

“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 advocacy@bayada.com.

New Jersey’s Legislative Goals and How You Can Help Make an Impact

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 advocating for HHAs like Indira (right) and clients like Jessie

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 advocacy@bayada.com today.

2. Private Duty Nursing (PDN) Program—Increased Reimbursements for Increased Nursing Wages

Increased PDN rates are important to ensure clients like Lili (left) can continue to have reliable nurses like Barbara (right)

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 at home.

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 advocacy@bayada.com today.

Rhode Island: In a Year After a Big Win, Four Major Priorities for 2019

Last 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 clients.

As a 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.

Our 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

GAO Director for RI and NY, Ashley Sadlier, testifies in support of COLa adjustments for home care workers

The 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

RI representatives Patricia Serpa (left) and Mia Ackerman (right) introduce bill to increase home care rates for high acuity skilled nursing services

One major 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 asadlier@bayada.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 is working with the State of RI to streamline processes for medically complex Rhode Islanders transitioning from pediatric to adult home care

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 relationship-building

BAYADA and the RI Partnership for Home Care meet with Rep. Joseph McNamara

While 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.