Every year, the
Government Affairs Office (GAO) travels the state to connect with our service offices
about our legislative priorities and the importance of advocacy. Not only do
these visits give us the opportunity to share the work we do to improve the
state of home health care in New Jersey, but they also give us the unique
chance to hear about the challenges you all often face in attempting to deliver
the compassionate, excellent, and reliable care that our clients deserve.
Throughout our visits so far, we have been able to celebrate our collective successes and accomplishments. In 2018, our GAO Ambassadors and service office employees attended a number of district office visits and legislative receptions, and participated in phone banks, letter writing campaigns, and action alerts all in support of accomplishing legislative priorities that support our nurses, aides, clients, and families. Without your partnership and collaboration, we would be unable to deliver on our promise to act as the voice for BAYADA and its clients and employees.
In addition to
celebrating last year’s successes, we have worked together to identify ongoing
challenges and to form our 2019 legislative priorities and strategies. As we’ve
formed these priorities, it is clear that our grassroots efforts and your
continued commitment to advocacy will be integral to achieving our goals.
Thank you to the many offices who have made the time to meet with us. In 2019, we will continue our outreach effort to accomplish our goal of meeting with 100% of our New Jersey service offices. If you’d like to learn more about our road show, our 2019 legislative priorities, or getting more involved in advocacy at BAYADA, contact firstname.lastname@example.org.
GAO can’t do it alone, and in North Carolina we are proud to have so many employees that understand the impact of sharing their voice on behalf of all our staff and clients!
SHE and GAS Host Impactful Home Visit
Last month two offices, SHE and GAS, teamed up to host a
home visit with newly elected Senator Ted Alexander. Our BAYADA team of
advocates, including MIM Division Director Joe Seidel, GAS Clinical
Associate Cheryl Reading and GAS Client Services Manager Jillian Fernald, as
well as the client’s long-time nurse Vikki, spoke passionately about our
services and the challenges we face in care delivery.
The visit was a grand success! The importance of home care and the work you do every day was certainly not lost on Sen. Alexander, whose wife and daughter are both nurses: “Our goal,” he explained, “is to keep families where they belong, together and at home.” These types of interactions lay the foundation for support of our legislative asks because the decision-makers see first-hand the impact home care has on families.
RAN Builds Relationships in a Different
Last month, the RAN office hosted a ribbon cutting ceremony
to commemorate the grand opening of our new state-of-the-art simulation lab and
training center. This was no regular ribbon cutting ceremony where the office
invited current and prospective nurses to tour and see-in-action the simulation
lab. We took the opportunity to educate
lawmakers on the scope and breadth of what is possible in the home by inviting
Senator Wiley Nickel to welcome the group. We also included Ed Troha, Vice
President for the NC Chamber, who has four nurses in his family, to speak about
the importance of the training center in job creation.
Additionally, former Senior Chairman for House Appropriations Nelson Dollar issued a proclamation to show his strong and constant support for home care. This center allows BAYADA to train nurses using real life scenarios that helps develop confidence, competence, and builds career-building skills to home health care nurse. Increasing awareness among legislators and other community leaders on the benefits of home care helps garner support as we work toward our legislative goals.
Thank you to the many
North Carolina staff and families that regularly share their voices in
advocacy! To find out how you can get more involved, contact GAO Director Lee Dobson today!
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
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.
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!
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.
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
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 at the Hilton Garden Inn 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 – 4/9 at the Capitol in Providence (morning of Advocacy Day)
*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
Christine’s advocacy efforts led to the ultimate win: a new law that will benefit families!
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!
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 Post, Boston 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.
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:
Like and follow them on social media (the links are right on the page!)
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.
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.
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.
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@example.com.
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 employeeJarod 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 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.
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.
For information about how you can begin your journey into home care advocacy, contact firstname.lastname@example.org.
Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.