New Hearts for Home Care Member Showcases Advocacy at Home!

Left: Gaston Gazette reporter chats with Dimpal and her BAYADA nurse Amy.
Center: Dimpal’s long-time nurse Chastity helped Dimpal live on campus and graduate from UNC Charlotte!
Right: Dimpal’s nurse Toni has been by her side for nearly a decade.

Oftentimes, when we hear the word “advocacy” we think about attending a BAYADA-sponsored lobby day in a state capitol or visiting a legislator’s local office to ask him or her to support or oppose a piece of legislation. While both those options are in fact forms of advocacy, they’re not the only ones.

North Carolina client Dimpal Patel recently joined Hearts for Home Care, a program that BAYADA’s Government Affairs Office began to get clients, families, staff members, and the community at-large more engaged in legislative advocacy. She expressed that she wanted to get involved, but as an individual with a trach, vent, and wheelchair, she would need a lot of assistance traveling to advocate in person.

The Hearts for Home Care team immediately encouraged her to reach out to her local paper by submitting a short opinion piece about her thoughts on home care. She shared an insightful take on how her nurses enabled her to live on campus and graduate from UNC Charlotte, as well as how important Medicaid is for her and so many others that rely on home care.

The Gaston Gazette received her piece, but instead of publishing it, they sent a reporter to Dimpal’s home to get a better look at how home care impacts her life first-hand. The reporter spoke with Dimpal and her nurse, Amy, about the importance of legislators’ mindfulness of continued Medicaid funding—and her story made the paper’s front page!

“I’ve always wanted to get more involved in advocacy because I think it’s important that our state and federal decision makers hear our voice and understand how important home care is in our communities… but I was always worried because I can’t get to the state capitol or to legislative hearings as easily as others can. I’m grateful that Hearts for Home Care has given me the tools to help me begin my advocacy journey from home,” Dimpal told us recently.

Home care by its very nature often helps those with limited mobility to live a full life and remain at home. That’s why the Hearts for Home Care team developed a robust menu of advocacy activities—so that anyone who wants to get involved in advocacy can! Reaching out to legislators via traditional media or social media, calling into a town hall, sending a newspaper clipping or an email are just a few of the many ways individuals can advocate from their own home.

In today’s world elected officials and regular individuals alike are bombarded with messages, from advertisements on the bus to a long social media newsfeed, all the way to robotic phone calls and junk mail. It’s important that we take a step back to cut through the noise to deliver our advocacy message to state and federal decision makers: Home care is important to me, and it should be important to you too.

For more information on how you, your colleagues, or your clients can share your voice in advocacy, please email advocacy@bayada.com or sign up to join Hearts for Home Care today!

2019: The Year of the Ambassador!

GAO continues to grow and strengthen our Ambassador program. Symposiums and other engagement activities are currently underway–don’t miss your chance to get involved!

US Senator Debbie Stabenow (D-MI) poses with Chief Government Affairs Officer Dave Totaro (center) and our Ambassadors of the Year at the 2018 Ambassador Awards trip in Washington, DC

When the Government Affairs Office (GAO) launched the Hearts for Home Care Ambassador program nearly ten years ago, we envisioned that each service office would have a designee who would essentially act as the GAO liaison for that office. How much we’ve grown! Today, our Ambassadors go above and beyond to be the voice for our staff and clients, and they truly exemplify the leadership and excellence qualities that have grown to be associated with the Ambassador program.

In 2018, GAO committed to a more robust and centralized grassroots program, including a stronger dedication to the Ambassador program. In 2019, under Grassroots Advocacy Manager Mike Sokoloski’s leadership, the program is set to have its strongest year yet. This year we will be sharing a new “Ambassador Dashboard” that will help our advocates stay engaged and track their progress, create more 30-minute advocacy Zoom trainings, and bring our top-performing advocates on an exclusive Ambassador Awards trip to Washington, DC in May!

Additionally, one of the most exciting changes we have underway is our newly-revamped state-by-state Ambassador Symposiums. Our Ambassador Symposiums are newly designed and structured to train rookie Ambassadors while simultaneously energizing more seasoned advocates. This year we are partnering with outside organizations and bringing in more legislative and client guest speakers to truly show attendees the impact that strong advocacy has in making meaningful changes for our staff and clients.

DE Senate Majority Leader Nicole Poore joined a recent Ambassador Symposium and shared her thoughts on the importance of advocacy with attendees

So far in 2019, we have held our first Ambassador Symposium in Newark, DE for both our Maryland and Delaware Ambassadors. Here, DE Senator and Majority Leader Nicole Poore came to share her passionate story about how she initially became involved in advocacy for her child, and how she now sees her role as being an advocate for all her constituents. Throughout the spring, we will continue to host Ambassador Symposiums in New Jersey, North Carolina, South Carolina, Georgia, New York and Rhode Island. Whether or not you’ve attended in the past, be sure to check out what being an Ambassador is all about during our upcoming symposiums!

As our Ambassador program continues to grow, we are seeking new Ambassadors from all service and support offices, and are seeking greater involvement from field staff, clients, and other organizations. It is vital that we join together as Hearts for Home Care to strengthen our collective voices in support of home care. Our Ambassadors serve as the forefront of our advocacy program, and truly make the difference in educating local legislators about home care and its impact on clients and communities.

For more information about the Ambassador program, upcoming Symposiums, or home care advocacy in general, contact me today!

2019 Ambassador Symposium Schedule*

SC – 2/20 at the state capitol in Columbia

GA – 2/21 at the state capitol in Atlanta

PA – 2/28  site TBD in Harrisburg

NJ – 3/13 at the New Jersey Learning Center in Pennsauken

NC – 3/28 at the North Carolina Learning Center in Charlotte

NY – TBD

RI – TBD

*Please note that the DE/MD Symposium has already occurred, but it’s not too late to become an Ambassador if you are interested! Contact Mike Sokoloski for information.

Advocacy Win! Home Care Employee Christine Detweiler’s Advocacy Efforts Lead to New SMA Law

Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!

Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!
Rep. Marguerite Quinn’s home visit with a five-year old client with SMA led her to introduce a bill about newborn screening for the disease!

Pennsylvania Hearts for Home Care Ambassador Christine Detweiler has always been a diligent advocate, but recently, her efforts have proven that home care employees can truly go beyond the call of duty for clients and staff by serving as their voices in our state capitals.

“Home care is important to so many Pennsylvanians, and many aren’t as readily able to meet with legislators to share their stories,” said Christine. “I see advocacy as an extension of why I do what I do as a home care employee: We need to make sure we get out there to be a voice for those who don’t have one!”

Christine has been progressively adding more interactions to her advocacy portfolio—Over the past year-and-a-half she focused on meeting legislators in their district offices, and in the past few months she has hosted multiple home visits. Home visits are the most impactful way to demonstrate the importance of home care to legislators because it gives them a chance to see firsthand how clients receive services. To say Christine’s home visit resonated with Pennsylvania state Representative Marguerite Quinn is an understatement.

A few months ago, Christine led the representative on a home visit with five-year old client Gideon M. who suffers from Spinal Muscular Atrophy (SMA). His mother shared their heartwarming story and opened up about their family’s challenges and Gideon’s ever-growing needs. Her story impacted the representative so deeply that shortly after the visit, Rep. Quinn emailed Christine to further assess the family’s needs and determine how she could help them obtain a transportation cart that would make Gideon’s care easier. The outreach didn’t stop there.

Rep. Quinn recently reported to Christine that she has arranged for a builder to come into the family’s home to build custom doors to create a private area for Gideon downstairs. She also reported that she contacted a rotary to find out if the family can be provided with a generator so that they do not need to constantly worry about their home’s power going out. It is truly remarkable how Christine’s efforts have impacted her client and his care.

In addition to her efforts for Gideon’s family, Rep. Quinn introduced a bill that would add SMA screening to the newborn screening list to help diagnose this disease before a child is even born. After introducing this legislation, Rep. Quinn encouraged the state Newborn Screening Advisory Board to support the measure. As a result of her continued efforts, this past month Secretary of Health Dr. Rachel Levine signed the recommendation.

The Hearts for Home Care Team can’t be prouder of the impact that Christine has made! Her passion and tenacity has reached the hearts of many legislators, and she is truly making a name for herself in Harrisburg as a tireless advocate!

A special thanks to Rep. Quinn for her work to get this law on the books on behalf of all of Pennsylvania’s future families. Click here to read the opinion piece that Gideon’s mom, Ruth M., authored, and The Intelligencer published!

To learn more about how your office can host a home visit, or ways you can get involved with advocacy on behalf of all home care staff and clients, email advocacy@bayada.com today.

Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day
Pictured: Christine Detweiler (left) poses with fellow home care advocates and state Representative Craig Staats during The Pennsylvania Home Care Association’s Advocacy Day

Combatting the In-Home Caregiver Crisis: What Can We Do?

North Carolina family meets with their state legislator to discuss the importance of home care in their lives.
North Carolina family meets with their state legislator to discuss the importance of home care in their lives.

Whether you worry about your aging parents’ ability to remember to take their medication on time or you have a medically-complex child that requires 24-7 skilled nursing care, families that rely on home care across the country are feeling the squeeze: There just aren’t enough quality in-home caregivers, and it is quickly becoming a crisis. While more of the general public is beginning to understand the negative impact this is having on our communities, there is much more to be done to mitigate the impending consequences. Together, we can advocate to combat this looming access-to-care crisis.

We’ve read the articles and we know the facts. Home care is the most cost-effective and patient-preferred healthcare setting for individuals and families who want to remain at home. This is true for older Americans who wish to age in place to parents who believe their child should live at home and not be raised in costly institutional settings. Moreover, demand for in-home caregivers will be continue to increase as baby boomers age and better treatments for chronic illnesses and disabilities continue to become more widely available.

If home health care is in high demand, why are we still facing a shortage of available workers? Home care providers struggle to recruit and retain enough quality caregivers to keep up with the growing demand. Because many insurance companies still do not cover in-home healthcare services, many home care providers rely on government reimbursement rates to cover provided services. That is: When a patient is prescribed and authorized for in-home care, the state reimburses the home care provider for delivering that service. The provider relies on that reimbursement rate to not only pay the direct care worker’s wages, benefits, supplies, and training, but also to cover wages and costs for the workers needed to coordinate and supervise in-home staff.

While rates vary widely depending on the service and the state the care is delivered in, there is a dominant trend that contributes to providers’ inability to keep up with demand: State governments’ reimbursement rates are too low to attract and retain the proper, high-quality workforce necessary to deliver this care. And there are several competitors at play: Hospitals and other institutional settings like nursing homes are able to pay workers more because one caregiver can deliver multiple services to multiple people during one shift, so institutions are able to rely on multiple reimbursements to cover employee wages and costs. Additionally, the home care industry faces competition from non-healthcare industries like fast food companies and retailers, which can often pay workers at competitive rates and offer more consistent schedules and other benefits.

While home health care offers one-on-one care to vulnerable individuals at a lower cost, these reimbursement rates have stagnated and fallen past the cost-of-living across many states. Some states, have not addressed reimbursement rates for decades, putting home care providers at even more of a disadvantage when competing for labor. For example, California has not increased its reimbursement rate for Medicaid home nursing services for nearly two decades. Even the most compassionate home care workers  who enjoy the personalized nature of home care are leaving the industry for better-paying jobs in neighboring states and in other settings and industries.

Who can resolve this issue? By and large, state governments are responsible for making decisions that affect home care, including reviewing reimbursement rates and adjusting them so that home health care providers can attract the workforce necessary to keep vulnerable state populations at home. While the rates vary in each state, one thing is consistent across state lines: legislators, who are responsible for making these decisions, are under great pressure to keep state budgets in line while making the necessary expenditures to all of the departments, industries, and populations that need the government’s financial support. All too often, other industries’ voices are heard louder, and home health care continues to fall by the wayside.

Is there any good news? Yes: People are beginning to see the problem. Public awareness of the importance of home care and of the impending access-to-care crisis is becoming more widespread. People care about the issue now more than ever before, and people across the country are beginning to realize that, even if it doesn’t affect them now, home care will impact their lives in the future.

Reports, studies, and articles have made information about the home care industry and the widening labor gap more available. Mercer Health Provider Advisory recently created an interactive map that visually depicts the deficit of home health aides and other healthcare workers in specific states and across the US through 2024. Articles have come out in the Washington PostBoston Globe,  Baltimore Sun, and in local news outlets in South Carolina and Rhode Island, among other states.

And the other good news is evident to many: Home care is simply the right choice. Many legislators are aware of home care’s cost-saving potential, especially as home care keeps people out of costlier institutional settings and prevents ER stays and hospital admissions. And while they may understand the advantages that home care offers families in general, not all legislators realize the impact home care has on the families that they directly represent as public officials.

Public awareness isn’t enough. Action is necessary. Studies, reports, articles, and direct lobbying efforts from home care providers and state and federal associations and partnerships have raised the public’s and legislators’ awareness of home care as a service. However, lawmakers’ awareness of home care issues have not yet spurred them into taking action to address stagnating reimbursement rates and providers’ inability to compete for a fair share of the labor market. We must leverage our collective voices by truly showing legislators what home care is, how it impacts us, and what happens if families can’t access care. Legislators must change laws and policies to reprioritize home health care for their constituents.

What can you do? Join the movement. As individuals, we are responsible for telling our elected officials what is important to us and what those we elect to office should prioritize and champion. Advocating for home care is easy: Call your state and federal representatives and senators to request a meeting to discuss home care, or even simply send a letter, an email, or even a Facebook message or Tweet to let them know about what home care means to you. The Hearts for Home Care platform was specifically created to help members of the home care community learn about opportunities to get involved in home care advocacy. There are plenty of ways big and small to get involved, the most important thing is that we share our voices with one unified message: Home care is important to me, and it should be important to you too.

To learn more about Hearts for Home Care and to register, please visit our website, follow our Facebook and Twitter, or email us at advocacy@bayada.com today.

Using Social Media as an Advocacy Tool

Every day, BAYADA employees, clients, and families use social media to connect with one another, keep in touch with distant friends and relatives, and learn about news and events near and far. But social media has evolved far past the traditional definition of “social.” In today’s world, social media gives the home care community the opportunity to spread public awareness about home care’s impact and the opportunity to more conveniently advocate for better home care laws and policies.

Advocacy simply means communicating to elected officials what home care means to you and how it impacts your everyday life. Because our state and federal lawmakers make decisions that affect home care providers’ ability to recruit and retain quality caregivers to serve our clients and their families, it is important that they are able to connect home care to their constituents’ names and faces. Social media outlets, particularly Facebook and Twitter, allow for members of the home care community to advocate from the convenience of their home or office.

Sharing a video of a family expressing the value that their in-home nurse or aide brings to them and their loved ones, for example, enables other social media users to understand how home care impacts them, their neighbors, and thousands of people across the country. Our Hearts for Home Care platform is designed to share videos, quotes, photos, news, and advocacy opportunities with elected officials and the community at-large.

In addition to this platform, it’s important that members of the home care community—including staff, clients, and family members—are aware of the power they hold at their own fingertips. Getting involved in advocacy through social media is easy, and the more we share our voices the better we can be heard. In addition to following our Facebook and Twitter, you can tell your elected officials what home care means to you in three easy steps:

  1. Find your elected officials on Hearts for Home Care’s Find My Legislators page
  2. Like and follow them on social media (the links are right on the page!)
  3. Connect with them regularly: Share Hearts for Home Care’s posts with your legislators, post on their pages about what home care means to you, or message them to ask them about meeting them in-person to talk about the value of home care. You’ll find that their pages will also give you information about news and events like Senior Expos and Town Halls that may be valuable for you, your staff, or your clients.

Social media not only brings people who value home health care together, but it shows those who have not yet needed home health care its value and necessity. It gives our industry a face and a voice and allow our representatives and senators to see that it affects real people in their communities, and it shows our elected officials that our friends and neighbors with special medical needs should be able to receive the care they need in the place the feel the safest and most comfortable–at home. To learn more about how you can be a voice for home care, join Hearts for Home Care today.

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

 

 

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!

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!