Prioritize Home Care for Special Needs Families Like Ours

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

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

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

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

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

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

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

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

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

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

-Haley Keisler
Lexington, SC

Meet the Keislers: How Home Care Keeps Families Together

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

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

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

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

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

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

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

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

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

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

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

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

Advocate Spotlight: Mark Steidl acts as a voice for those without one–through his Dynavox communication device

Relying on a communication device to speak does not stop Mark from being a fierce advocate for disability rights and for the many individuals across the US that, like him, rely on in-home caregivers.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association's Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Associate Kimberly Gardner (left) and CEO David Baiada (right).
Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Associate Kimberly Gardner (left) and CEO David Baiada (right).

 

On May 22, Mark Steidl and his mother Tina joined hundreds of Hearts for Home Care advocates in Harrisburg, PA to express to legislators the importance of home care and of its impact on the thousands of Pennsylvanians that are able to remain safely at home with their families due to in-home services.

Harrisburg isn’t Mark’s first time joining with others to advocate for better policies. In addition to his participation in the Pennsylvania Homecare Association’s (PHA) Advocacy Day, Mark currently actively advocates on behalf of the National Council on Independent Living and the United Way of Southwestern Pennsylvania’s “21 and Able project.

Not only is Mark an advocate, but his goal is to complete his Associate’s Degree in Social Work coursework, go on to obtain his bachelor’s degree, and eventually serve in a case management position so that he can continue to help others with disabilities. Mark, who is 23 and diagnosed with Cerebral Palsy, uses a Dynavox to communicate. 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.

During their time in the state capitol, Mark and his mother met with Senator Jay Costa, Representative Paul Costa, and Representative Ed Gainey, who represents Mark’s district in the Pennsylvania House of Representatives. To prepare for the day, Mark used his Dynavox to create a message that he would share with each legislator. Mark found it important to not only advocate for himself, but for his caregivers. In addition to advocating for three key issues that PHA outlined as legislative priorities for the home care industry in Pennsylvania, Mark’s speech included the following:

At home and in the community, I have personal care assistants who help me with various physical things. These assistants are very important to me, as they are to any person who needs one-on-one help, whether people with disability or older people. These aides enable us to live at home and avoid having to go to nursing homes.

“I am advocating today on behalf of home care providers who make it possible for us to have high-quality homecare services… When I think of my priorities as an individual with a disability, my first priority is my health and how it affects my life. But helping people maintain good health should also a priority for society.

I am pleased to be here today because you make decisions that affect people with disabilities and older adults. You have the power to create positive change and to enable people to live good lives!”

When Hearts for Home Care asked Mark to tell us why he advocates, Mark used his Dynavox to tell us:

“I consider myself an advocate for myself and for other people with disabilities. My disability is visible, and many people are likely to underestimate me and not see the person that I am. I have to challenge society’s perception each and every day.

I have to tell people when I first meet them why I use a wheelchair and communication device to talk. I have to explain cerebral palsy. People often wonder how I do school work without the use of my hands, so I have to explain that also.

All of us with disabilities have abilities and accomplishments, but we have to advocate for ourselves in order to create our place in the world.

The efforts of many dynamic leaders, innovators and activists affect our lives every day. The things I do every day would have been impossible 30 or 40 years ago. Before the changes in education laws that occurred in the 1970s, I would have been considered too disabled to attend public school, let alone Community College of Allegheny County. 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.”

Mark is an inspiration to many of his peers, and to many who understand the importance of sharing their voice on behalf of others. For ways you can advocate for yourself, your loved ones, and your community at-large, please email advocacy@bayada.com

 

 

South Carolina Representative Garry Smith Visits Local Family to Learn How Home Care Impacts his Constituents

Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).
Rep. Garry Smith (left) visits home health care client Emma (held), mom Gina (right) and their in-home BAYDA nurse Danielle (second from left).

 

South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.

During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.

In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.

Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”

After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”

“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”

Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email advocacy@bayada.com.

Hundreds of Home Care Advocates Attend Pennsylvania Homecare Association’s Annual Advocacy Day

Home care employees, clients, and families participate in Advocacy Day in Harrisburg, PA

Last Tuesday, May 22, more than 200 home care employees, clients, and clients’ family members came together with the Pennsylvania Homecare Association (PHA) for their annual Advocacy Day in Harrisburg, PA. Advocates came from a variety of agencies and backgrounds across the state to discuss the importance of home care with their legislators.

Advocates met with more than 200 legislators to educate them on the need for deemed eligibility to allow more of Pennsylvania’s seniors to remain at home, increasing pay for home care workers, and the importance of maintaining strict hiring standards within the home care industry. Advocates used their passion and first-hand experience to demonstrate the necessity of these initiatives to legislators and made lasting impressions through their stories.

And advocates’ hard work paid off! During PHA’s press conference, Rep. Stan Saylor, Chair of the House Appropriations Committee, stated that he would support a rate increase for Medicaid personal assistance services (PAS). Additionally, PHA has been in touch with staff from the Senate Appropriations and Health Committees about bringing deemed eligibility legislation to the Senate floor for a vote.

Advocacy is a vital part of a democracy and allows for legislators to hear about issues their constituents routinely face from a different perspective. Through BAYADA Home Health Care’s Hearts for Home Care Ambassador Program, BAYADA employees are educated on the issues facing their states, strategies to advocate effectively for home care staff and clients, and the tools necessary to make a lasting impression.

Advocacy is just another way of ensuring the highest quality care is provided to those who need it. Below, please find quotes from some of those who attended this year’s Advocacy Day on why they chose to participate, as well as a reaction from Pennsylvania State Representative Donna Bullock.

 “When I was approached several years ago to be a Hearts for Home Care Ambassador, I was hesitant. There is so much about politics I don’t understand, but what I do believe in is what we do at BAYADA! We have such an amazing opportunity to be the voices for those who don’t have them and if we believe in what we are speaking too, it’s really not that hard! Advocacy, to me, just means I’m standing up for what I believe in and sharing it with those who have the ability to make change.” –PA Hearts for Home Care Ambassador Christine Detweiler

“Advocacy in home care is really about our government representatives seeing the faces and hearing the voices of the people. These interactions help legislaotrs know what our needs are so they can do their best to help my family and the many other families who need a nurse or an aide at home.” –Amy Zemek, Mother of client Alexa D.

“What I found special about attending Advocacy Day in Harrisburg was that the real people we serve every day did not need to rely on anyone else to tell their story. They were allowed to advocate for themselves. We just need to listen more and allow their powerful story to speak loud and clear. Advocacy Days allow those we serve the opportunity to tell their powerful story and for our elected officials to hear and listen to their stories, because those we serve can often advocate for themselves far better than we can.” –Home Care employee Jarod Champeaux

“What is advocacy to me? Advocacy is the look on the faces of the people we serve, the love, the commitment, and the lives we change by the amazing work that we do!” -PA Hearts for Home Care Ambassador Candice Proctor

“Affordable healthcare is a top priority of mine and is critical in safeguarding the well-being of our communities. I share BAYADA’s Home Health Care’s passion and devotion to ensuring anyone who qualifies for home care service receives the proper treatment they need and deserve. I thank them along with the many other advocates for traveling all of the way to Harrisburg to fight for our cause. Together, we can instill change, protect families and achieve our goals.” –State Representative Donna Bullock, 195th District

Thank you to the many home care employees, clients, and families that participated in Advocacy Day!

The Power of Advocacy: Remembering Katie Beckett, March 9, 1978-May 18, 2012

Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver. 
President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett, on the tarmac of Cedar Rapids Municipal Airport on September 20, 1984

 

Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.

Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.

Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.

At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.

At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.

Secretary Schweiker also created a review board to handle similar cases.  Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.

Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.

The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.

Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”

If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email advocacy@bayada.com today.

Rest in Peace Katie, your legacy lives on.  – March 9, 1978-May 18, 2012.

Quotes from our Advocates: Legislative Day in South Carolina

On April 4, the South Carolina Home Care and Hospice Association hosted its second annual Legislative and Advocacy Day. This year, a record-breaking total of nearly 50 advocates gathered in South Carolina’s state capitol for a day of meaningful and heartfelt advocacy. Advocates, which included two home care clients, walked the halls with a clear message: Investing in the state’s Medicaid Waiver programs will save the state money and keep medically fragile children, disabled adults, and seniors home with their loved ones and out of higher cost facilities.

With their passionate message in hand, advocates spoke with over 50 legislators about the importance of home care. The highlight of the day was the recognition the home care advocates received on the house floor by Speaker Pro Tempore Representative Tommy Pope!

Advocates were inspired by the impact they made that day. Below, please find several quotes and pictures submitted by our advocates.


Brandon Keisler, Haley Keisler, Rep. Jimmy Bales, Stephanie Black, and home care clients Max and Matthew K.
“It was an honor to participate in this year’s Advocacy and Legislative Day, to be a part of such an impactful team, and especially to bring my two boys with special needs to the event. It was a wonderful to be able show the representatives firsthand why we need higher Medicaid reimbursement rates in South Carolina.” 
 -Haley Keisler

Dan Noel, Jen Collier, Rep. Bruce Bryant, and Amy Ramey.

“Speaking with legislators about the need for higher Medicaid reimbursement rates in South Carolina was an amazing experience. We had a great turnout and I was especially pleased with all the love our fellow advocates gave us; their support was energizing– what a great group of people!”   -Amy Ramey

“It was overwhelming to see so many people come together for a common goal. We advocated for something so important and I am so proud to have been a part of that!”   -Jennifer Collier


Alisa Borovik, Nicole Lugo, Rep. Sam Rivers, Tara Montague, and Jaime Bennett.

“This was my first Legislative Day and it certainly will not be my last. It was truly remarkable for all of us to come together from different BAYADA backgrounds to make this day a success. I look forward to advocating for my company and my state in the future!”

-Jaime Bennett


Nicole Lugo, Nancy Mace, and Lee Dobson.


“It was encouraging to see the growth of our advocacy group over one year and it is clear that Hearts for Home Care has the opportunity to be the biggest voice for home care in South Carolina.”

-Nicole Lugo

 


Louise Lindenmeier, Rep. Leon Howard, and Tim Peterkin.


“It was truly a pleasure to connect with our South Carolina legislators to explain how our services can keep their constituents at home, explain the cost savings of home care versus hospitals and facilities, and connect legislators with our purpose and mission.”

-Tim Peterkin


Pictured: Ryan Burnaugh, Rep. G. Murrell Smith, Melissa Allman, and Dave Totaro.

 

“We believe Home Care is important to our communities, and I support the good work you do. Please let me know how I can help you.” 

-SC House Ways and Means Health and Human Services Subcommittee Chairman Rep. G. Murrell Smith

 


Karen Noblett, Foster Krebs, Speaker Pro Tempore Tommy Pope, Maggie Tracey, and Melissa Allman.

 

“The South Carolina Legislative Day was a great opportunity to meet with legislators and talk to them about the importance of investing in home care… I can’t wait to see the impact that we have on laws affecting home care!”   -Foster Krebs


Nicole Lugo, Rep. Neal Collins, Tara Montague, Jaime Bennett, and Dominic Molin.

“Over the course of the day I felt a strong sense of comradery, pride, and support when—no matter where I looked—I saw a colleague dressed in their finest red! It was great to be a part of something bigger than myself by advocating for those who need it most.”

-Dominic Molin


Dave Totaro, Rep. Katherine Arrington, and Laura Jaycox.

 

“Legislative Day made it possible to get involved and support home care even though I had no prior experience. I enjoyed meeting everyone and learned so much. Thank you so much to my fellow advocates for all of your knowledge and support!”

-Laura Jaycox


THANK YOU to all of our advocates that participated in 2018’s Legislative and Advocacy Day!

Hearts for Home Care advocates in South Carolina Capitol for Lobby Day

Angela Ortiz: A BAYADA Home Health Care Parent’s Journey into Advocacy

Home care advocate Angela Ortiz delivers the keynote address at a legislative reception held in the Massachusetts State House.

Angela Ortiz is a fierce advocate for her medically complex daughter, Ayla, and for other medically complex children and adults across Massachusetts.

Earlier this month, Angela delivered her keynote address at the 40th Annual Legislative Reception held by the Massachusetts Developmental Disabilities Council and The Arc of Massachusetts.

Angela’s inspiring speech, delivered in front of over 200 people, including several state legislators and Massachusetts Governor Charlie Baker, was met with uproarious applause and overwhelmingly positive feedback.

Angela stated, “One mother shared with me that she used to have that fight and fire within her when her daughter was younger, but that her flames had since burned out. She shared that my speech really spoke to her and reminded her of how important it is to find it again. I hope that sharing my story and my journey will inspire others to take action… No matter how slow-seeming your journey may be, it’s important we remember why we advocate: To give a voice to those without one.”

Angela is the founder of the Massachusetts Pediatric Home Nursing Care Campaign that was launched in April 2016 to address the longstanding crisis families have been in struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home.

Below is the full transcript of her keynote address.


*Arc/MDDC 40th Annual Legislative Reception Keynote*
Angela Ortiz
March 7, 2018

Next month will mark two years since I entered the State House with a group of parents from the Mass Families Organizing for Change Leadership Series. I was a mother desperate to improve the quality of life for my daughter, Ayla, who was just two at the time, and very sick.

I was drowning in my own worries and fears that came with her complex medical needs, but more so in the inability to access vital home care services she was approved to receive yet didn’t come.

Imagine being thrown into the deepest of seas and when you call out for help there aren’t enough life vests to go around or enough lifeboats to bring you and your family to safety.

I felt so powerless…until…I entered this building. It’s the day I became an advocate!

I was equipped with a vision for my daughter and new tools and the confidence to be a part of some kind of change to address a burning need that affects her life and so many other medically fragile children and adults in the Commonwealth.

That day ignited a flame so deep within me…and I’ve been “FIRED UP” ever since.

I’ll never forget a moment I shared with Ayla shortly after her heart surgery. I put my index finger in the palm of her tiny hand, we locked eyes seeing past all the tubing and drains, and she wrapped her fingers around it and squeezed with such intensity. Wow! At just 3 days old…my fragile and recovering newborn showed her FIRE and fighting spirit…that energy moved me. It strengthened me. It gave me hope that things would work out and be okay.

You see, we all have it in us…this FIRE!

And today, I want to remind you of that and call attention to it in hopes that each of you will set out to find what it is that sparks or rekindles the flame within you. Because when it happens, it’s an unstoppable force, you feel you can move through anything, no hurdle is too high no matter what your life circumstances are in that moment. You find a way! It’s so deeply rooted in love, you can’t help but burst into action and be a part of something bigger than yourself and your own lived experience.

There is no greater time to awaken your inner fire and unleash that advocate in you than when your life or the life of a loved one depends on it. And that time is now! 

I’m counting on all your flames, and more importantly, the disability community is counting on them because it’s in our collective energy, strength, and spirit where I believe the resolve lies as we blaze through every obstacle that aims to unravel and weaken the civil rights of people with disabilities that so many before us have fought so long and hard for.

Yes, we face an uncertain future, but the one thing we have control over is our own certainty of being there, in some way, to do something; to take a stand; to have a voice; to be ready to take action to defend the current laws and protections in place while we also continue to advocate and lay the groundwork for new laws and protections that keep us moving forward.

Each one of you has a place and purpose on this advocacy journey! Whether you are just stepping on it for the first time or you’ve been paving the way for years, as Ayla’s favorite song demands…“This little light of mine, I’m gonna let it shine”. DO JUST THAT…let your light shine, let it shine, let it shine.

You will be a moving force…we will be a moving force… and the future will be bright.

Thank You


For information about how you can begin your journey into home care advocacy, contact advocacy@bayada.com.

Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.

Client & Family Stories: Meet Tara Montague

Tara is an advocate for her family, and yours.

NJ Assemblywoman Carol Murphy with home care advocate Tara and daughter Mary, who has SMA
NJ Assemblywoman Carol Murphy (right) learned about the benefits of home care when she visited Mary and Tara at their home.

Last summer, as lawmakers in Washington, DC debated health care reform, Tara Montague had cause for concern. The proposed legislation included significant cuts to Medicaid, which for Tara and her family, could have been disastrous.

Tara and her husband, Jim, rely on home care nursing for their daughter Mary, 20, who has spinal muscular atrophy (SMA). They know that many families turn to Medicaid to cover the cost of home care and feel fortunate to have private insurance for Mary’s nurses. However, they depend on Medicaid for Mary’s prescriptions and medical equipment, which total in the thousands each month.

“Mary is on numerous medications, and her medical equipment includes a ventilator, oxygen, a wheelchair and hospital bed, feeding pump supplies, a nebulizer, pulse oximeter machine, and more,” said Tara. “Without Medicaid, I don’t know what we’d do, and that’s why I fight so hard to get Mary the benefits she needs.”

Giving families a voice

As a parent of a child with special needs, Tara can understand and empathize with our clients’ daily struggles because she lives it, every day. Last year, she joined BAYADA’s Government Affairs office as manager of client and family advocacy. Here, she continues to fight for Mary, and for every pediatric and adult client who depends on home health care to live with comfort, independence, and dignity.

“Last summer I worked with BAYADA clients who were willing to share their stories with federal legislators to help prevent the Medicaid cuts,” said Tara. “As I continue to grow in this new role, I hope to encourage more and more families to speak up, to have a voice, and to know that they can make a huge difference in the legislative process.”

Getting involved is quick and easy

Tara knows all too well that for clients and families, the biggest obstacle to getting involved is time. That’s why she encourages them to register with BAYADA’s Hearts for Home Care Advocacy Center at heartsforhomecare.com.

We are not looking for a huge time commitment, it’s whatever they feel comfortable with doing,” she said.

The mission of Hearts for Home Care is to be a voice for BAYADA employees, clients, and their families. Through education, advocacy, research, and community service, BAYADA advocates for policies that support the highest quality of home health care services. The online advocacy center keeps clients and families informed about legislative issues at the state and federal level that can impact the home health care industry, and their access to care.

Advocacy can be a simple as taking five minutes to log onto the Hearts for Home Care Advocacy Center website and sending a pre-written email to local, state, and federal legislators. If clients and families want to do more, they can share their stories on the Hearts for Home Care Advocacy Center website; attend a lobby day at their state capital, a legislative round table, or a town hall; they can visit a legislator’s office; or invite a legislator into their home to see, first hand, how home health care professionals help improve lives.

Connecting with families and sharing stories

Tara has a degree in political science and extensive experience in marketing. In her previous role as a community liaison with a BAYADA Pediatrics office in New Jersey, she educated physicians about home health care, started a parent support group, coordinated a family resource fair, and helped families navigate through insurance challenges.

In her new role she hopes to develop training materials and tools for clients and families who want to become more active in advocacy efforts. But even more, she is looking forward to getting to know clients and families from across the country, and helping to share their stories – just like Mary’s.

To learn more about Hearts for Home Care, how you can get involved with advocacy, or how you can share your story, contact Tara at tmontague@bayada.com.

The Power of Advocacy: Home Care Employees Share Impassioned Testimony to Advocate for Nursing Rate Increases

Home health care advocate testifies in front of Delaware Joint Finance Committee 2018
BAYADA RN Victoria Carter advocates for higher reimbursement rates by providing moving testimony in front of the Delaware Joint Finance Committee

On February 21, seven BAYADA Home Health Care employees, one of whom is a parent and caregiver of a medically complex child, testified in front of a dozen Delaware state legislators and nearly 80 community members to advocate for a Medicaid reimbursement rate increase for registered nurses (RNs) and licensed practical nurses (LPNs).

The Delaware Joint Finance Committee met to hear the Department of Health and Social Services’ (DHSS) annual budget request in what ended up being a crowded room that drew so many members of the public that overflow seating had to be provided in the cafeteria, where a live video feed of the hearing was streamed. Though a few of these advocates were initially hesitant to speak in front of legislators- let alone such a crowd- what kept them going is their commitment to advocating on behalf of home care nurses, their clients, and their clients’ loved ones.

These advocates’ testimonies detailed their personal stories of why the committee should include additional funds to DHSS’s budget to be used to increase the state’s reimbursement rates for RN and LPN care by about 25%. Delaware’s current rates have not been increased in more than ten years, and these current rates are not adequate to keep up with demand for in-home nursing care because of the pressure that low rates place on providers’ ability to recruit and retain quality nurses. With a rate increase for RN and LPN care, providers would be able to attract more nurses to deliver the in-home care that pediatric, adult, and senior home care clients need.

BAYADA registered nurse Jen Saulsbury shared a moving story about two of her pediatric clients and the impact that nursing turnover rates, which stem from Delaware’s low reimbursement rates, has on them. She shared a crayon-drawn card from one of her pediatric clients to accompany her story, which nearly brought the committee to tears.

Committee co-chair Representative Melanie George-Smith and Senator Nicole Poore vocalized their support of increased reimbursement rates for RN and LPN care. It goes to show that advocacy is a powerful force in creating the changes necessary to support home care employees, clients, and their families.

Top left to bottom right: Danielle Myers, Jennifer Scott, Alice Knott, Amanda Brady, nursing student Morgan Luther; Jennifer Saulsbury, Victoria Carter, Shannon Gahs

Advocacy is powerful. The stories that these advocates shared in front of the committee were not those of data, numbers, and dollar signs, but rather their unique, passionate perspectives of why this issue is so important that it deserves legislative attention and action.

Advocacy doesn’t necessarily involve testifying in front of a crowded room. It can be sharing your unique story or picture with us, writing an email to a legislator, or participating in a meeting to talk about issues you face every day. A state-funded nursing rate increase cannot happen without getting other passionate individuals involved. If you would like to find out how you can to advocate for better home care laws and regulations, let’s talk about how you can get involved. Email me today!