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!

States Struggle to Recruit and Retain In-Home Nurses Due to Low Reimbursement Rates… But Advocacy Can Help

Home health care companies around the country struggle to recruit and retain enough qualified workers to support the growing number of children, adults and seniors that want to be cared for in their own homes. Recruitment and retention issues stem from a number of reasons, including the nationwide nursing shortage, low US unemployment rates, and inadequate Medicaid reimbursement rates that leave home care providers in a position where their wages cannot compete with those of other settings and industries.

BAYADA Home Health Care was recently featured in a Wall Street Journal article for the company’s efforts in solving for this by recruiting nurses from Puerto Rico to fill open nursing positions in Minneapolis. The island’s unemployment rate, currently at 10.8% is much higher than that of Minneapolis, which is currently listed at 2.4%.

A 2.4% unemployment rate is low even compared to the US rate, which is currently at a 17-year low of 4.1%. This low unemployment rate is compounded by the fact that in many states, Medicaid reimbursement rates are too low for home care providers to be able to recruit and retain workers, who can be paid a higher wage in other settings, like hospitals, and industries, like fast food and retail.

And it doesn’t end with a lack of workers for home care providers. This lack of caregivers can lead to an access to care issue in which individuals who can be cared for at home are left with no option but to receive care in a hospital or institution. Finding qualified caregivers is often cited as home care providers’ top challenge, and future estimates show that demand for in-home care will continue to grow due to the aging of baby boomers at alarming speeds.

What can you do to help? Share your voice. Reimbursement rate review and adjustment decisions are generally made in state capitols when legislators determine that such a need exists. This need must be communicated to legislators so that they understand the pressing nature of the issue and what could happen to the state’s Medicaid population if the issue is not addressed.

We can help you reach your legislators to let them know what increased reimbursement rates mean for you and your community. And if you would like to make an even bigger impact, consider meeting your lawmakers in-person at our Lobby Day. We take care of the scheduling and preparations- all you need to do is show up and share your voice. Upcoming Lobby Days are as follows:

Minneapolis, Minnesota: 3/6/18
Dover, Delaware: 3/14/18
Columbus, South Carolina: 4/4/18
Harrisburg, Pennsylvania: 5/22/18
Raleigh, North Carolina: 5/30/18
New Jersey: District office visits 4/20-5/4/18
Maryland: TBD

Contact Rick Hynick to find out what you can do to advocate, whether it be sharing your personal story, contacting your legislators, or participating in an upcoming state Lobby Day!

Advocacy Key to Getting Hospitalized Children Home

Increased wages for pediatric home nurses can bring more hospitalized children back home to their parents.

ThinkAdvisor recently published an article about numerous cases across the country in which hospitalized children are cleared to return home but cannot due to the severe shortage of home care nurses.  This means that these children must live in the hospital or other institution until they can get the nursing care they need at home. This lack of available skilled nurses has created a huge financial and emotional strain on these children’s parents and families.

So where are these nurses? Making higher wages in other settings and industries. Even though home nursing is almost always less expensive than hospital care, private insurance rarely covers the service and Medicaid pays very little for it. This leaves few nurses willing to work for these low wages, especially when they can receive higher pay in other settings or other industries entirely.

But it doesn’t have to be this way! Increasing the reimbursement rate for in-home nurses is possible, and increased wages increase parents’ access to in-home nursing care for their child. In Pennsylvania, for example, BAYADA home health care employees, clients, and clients’ family members advocated for a pediatric nursing rate increase and received a $5 per hour increase. BAYADA saw open hours for the program decrease by nearly 50% for one of our largest payors.

A parent coalition in Massachusetts successfully advocated for increased reimbursement rates after over a decade of stagnant rates. But in Massachusetts, the increase still is not enough—parents say that the wages remain too low to attract and retain enough home nurses for their state’s medically complex pediatric population.

In Pennsylvania, Massachusetts and in other states around the nation fighting an in-home nursing shortage, advocacy is the key. It’s important that we raise our voices about this issue so that legislators can understand what home care means to parents of medically complex children.

If you are interested in finding out what you can do to help bring these children home, let’s chat! Shoot an email to advocacy@bayada.com.

Trump Signs RAISE Family Caregivers Act, Bringing Hope to Over 40 million Family Caregivers Nationwide

Last week President Donald Trump signed the RAISE Family Caregivers Act, which passed the US House on December 18th and the US Senate on January 9th with strong bipartisan support in each chamber. Despite the tenuous political landscape, it goes to show that there is strong understanding that nationally, more must be done to support the over 40 million family caregivers in the United States.

The Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017—better known as the RAISE Family Caregivers Act—directs the Secretary of Health and Human Services to develop and maintain a national family caregiving strategy to address the needs of family caregivers. This plan must be developed within 18 months and the strategy must be updated every other year.

The act also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government and others may take to help caregivers. Some of the topics that will likely be addressed by the council include: respite services and options, workplace flexibility and financial security, and training support for navigating the healthcare system.

“The idea is to come up with best practices for health care providers and others, for employers to better support family caregivers and for government to better support family caregivers,” said Rhonda Richards, senior legislative representative of AARP. AARP championed the legislation, which received broad support from disability advocacy groups and other organizations, including the National Association for Home Care and Hospice (NAHC).

Senators Susan Collins (R-Maine) and Tammy Baldwin (D-Wisc.) were the bill’s primary sponsors in the Senate and the primary sponsor in the House was Rep. Gregg Harper (R-Miss.). Rep. Harper has real-life experience in the family caretaker role, having been caregiver to both his mother and his 28-year-old-son who suffers from Fragile X Syndrome.

According to AARP research, caregivers aged 50 and older who leave the workforce to care for a parent lose, on average, over $300,000 in wages and benefits over their lifetime. The financial, emotional and physical burden of caregiving is compounded by the nation’s aging population and the sharply shrinking “caregiver support ratio”- the number of potential family caregivers aged 45-64 for each person 80 and older. This legislation not only brings awareness to family caregiving issues, but will hopefully begin addressing the struggles that millions of family caregivers in our country face due to lack of support.

If you’d like to read about the RAISE Family Caregivers Act farther, Forbes has published a two-part series which focuses on the legislation’s specifics, and real life stories of the struggles of American caregivers.

*Update: The Alzheimer’s Impact Movement (AIM) released a fact sheet that contains information about the RAISE Family Caregivers Act and data specific to Alzheimer’s and dementia caregivers.

BAYADA Chief Government Affairs Officer Successfully Delivers MLTSS Implementation Presentation to MACPAC

Dave Totaro served as a panelist to inform Commissioners about lessons learned from Managed Care and MLTSS implementation in BAYADA states.

Last Thursday BAYADA Home Health Care’s Chief Government Affairs Officer Dave Totaro served as a panelist during the Medicaid and CHIP Payment and Access Commission’s (MACPAC) public meeting in Washington, DC. This opportunity was especially unique and important for BAYADA because MACPAC serves to provide policy and data analysis and make recommendations to Congress, the Secretary of the U.S. Department of Health and Human Services, and the states on a wide array of issues affecting Medicaid and CHIP. We are optimistic that Dave’s insights will help shape the Commission’s future recommendations on state and federal Managed Care and MLTSS policies and procedures.

MACPAC extended the invitation to Dave to serve as the panel’s provider representative due to BAYADA’s experience with Managed Long Term Services and Supports (MLTSS) and managed care implementation across a number of states. Dave accepted the opportunity and successfully delivered his presentation in front of the 17-person Commission and a public audience, which included a number of congressional staffers and CMS representatives.

Aside from Dave, participating panelists were Dennis Heaphy, a MLTSS beneficiary and expert on public health from Massachusetts’s Disability Policy Consortium, and Michelle Bentzien-Purrington, Vice President of MLTSS and Duals Integration at Molina Healthcare. Dave’s presentation focused on BAYADA’s experience in implementing Managed Care across multiple states, particularly the lessons learned that can translate to better implementation in future states looking toward managed care and MLTSS.

tactics for Managed Care Long Term Services and Supports MTLSS implementation success

Dave presented MLTSS implementation as a three-legged stool: Adequate rates, state supports, and federal process changes must all be in place for a successful rollout. Should one of the legs be faulty, then the entire operation is set to fail. The presentation described for the Commission:

  • The need for the state to set adequate reimbursement rates and why inadequate rates affect providers’ ability to recruit, retain, and compete, which can lead to an unhealthy provider network and, ultimately, an access to care issue
  • The need for states to protect a set adequate rate via a rate floor, and the need to regularly review and adjust this rate
  • The need for state oversight and regulation of MCOs so that providers can focus on care delivery rather than managing the administrative burdens and variable practices of each MCO
  • The importance of the federal government equalizing Home and Community Based Services with nursing home care to solve for the institutional bias that currently allows LTSS individuals to access facility care more easily than home and community-based care
  • The need for the federal government to collect uniform data so that MCOs and providers can work together to close care gaps and save the state money

Each section was accompanied by BAYADA-state specific examples, and the presentation concluded with a series of recommendations related to each of the above points. Throughout Dave’s presentation, the Commissioners and audience were engaged and following along to the accompanying PowerPoint. After his presentation, Commissioner Leanna George—the mother of a child currently living in an Intermediate Care Facility—positively commented that rate floor setting was as avenue towards ensuring adequate reimbursement rates that she had not heard of before.

During the Q&A portion of the meeting, Commissioner Brian Burwell asked that each panelist state which area of MLTSS the Commission should focus their research and attention. The other panelists echoed Dave’s sentiments regarding federal changes to rebalance HCBS with nursing home care to remove institutional biases that continue to affect beneficiaries who wish to remain at home.

After the panel wrapped up, Commission Chair Penny Thompson approached Dave to compliment him on his presentation, and Dave has already been contacted by MACPAC’s Executive Director Anne Schwartz regarding his future support and counsel on MLTSS. GAO is ready to work with the Commission on next steps and is excited to be at the table to help recommend policies that are favorable to home care providers.

Thank you to all BAYADA colleagues that assisted Dave in the research and creation of this presentation:

  • Alisa Borovik
  • Melissa Burnside
  • Lee Dobson
  • Linda Hughes
  • Kelly Lawson
  • Louise Lindenmeier
  • Matthew Lippitt
  • Kerry Meabon
  • Tara Montague
  • Laura Ness
  • Jennifer Vranich