States are beginning to make key changes to increase families’ access to home care
The COVID-19 pandemic has increased people’s awareness of the US healthcare system’s dependence on institutional care, and the potential dangers that come with a reliance on congregate healthcare settings. Nursing homes and hospital are a necessary part of the healthcare continuum, but COVID has undoubtedly increased the public’s appetite for—and governments’ understanding of—accessible home care.
COVID may have a long-term effect on healthcare policy, as it has shifted the spotlight to the inherent benefits of home-based care. Home care is cost-effective: It costs governments, insurance companies, and individual families less to provide care in the home than in a hospital or facility. It’s also patient preferred: 90% of America’s seniors say that they prefer to age in place, and families with medically-fragile children and adults know their loved ones do better when they are in their own home environments.
Home care advocates—state and national home care associations, providers, home care employees, and clients & families—have been advocating for better funding and better policies for home care for years with mixed success. In general, across the US, funding for home care programs continues to lag behind funding for services delivered in facilities like hospitals and nursing homes. But in this first post-COVID budget season, advocates have seen successes!
We’ve moved the needle: Several states increased their Medicaid funding for home care programs. The New Jersey legislature increased funding for home care by $2 more per hour, and for skilled nursing home care by $10 more per hour. Additionally, Delaware increased funding for skilled in-home nursing by 15%, and Georgia, Indiana, Missouri, and Pennsylvania have increased funding for private duty nursing by 10% or more. Thank you to these states for recognizing the importance of home care.Increased funding will help thousands of children, seniors, and adults with disabilities and medical complexities access the home care they’ve been struggling to access due to caregiver shortages that have plagued the nation.
Other states have increased funding for home care at smaller increments, including Minnesota and Vermont. While any increase is appreciated, there is still work to do in these states and many others: Increasing funding, and reviewing it regularly, is essential in ensuring that caregivers’ wages can remain competitive as costs of living continue to rise year by year. If home care funding is raised now, but then ignored for years to come, then families that need home care will be back to the same situation they were in pre-pandemic: Struggling to find the care they need to stay safe and healthy at home.
On behalf of the home care community, thank you to the many legislators and decision-makers who have supported home care this year!
Lacy is a three-year-old diagnosed with cerebral palsy (CP) and chronic respiratory failure living with a tracheostomy and feeding tube. Lacy and her family rely on skilled nurses to provide continuous hands-on care so that she can avoid hospitalization and stay where she belongs – at home.
“I don’t know what I’d do without my nurses,” says Lacy’s grandmother – her primary caregiver following the murder of her daughter when Lacy was in utero, “They’re my lifeline.”
Although Lacy receives services under the NC’s Private Duty Nursing (PDN) program, she doesn’t get all the coverage for which she qualifies and needs because nurses are difficult to recruit and retain. Open shifts are common in PDN due to Medicaid’s low reimbursement rate. Lacy’s grandmother had to quit her job in order to take care of her, and nursing coverage is only enough so that she can get sleep and perhaps run an errand.
Hearts for Home Care advocates are serving as a voice for home care clients like Lacy, and for family members who are impacted by the lack of nurses like her grandmother. To encourage state and federal legislators to support higher wages for in-home caregivers and increase vulnerable residents’ access to services, you can make a difference! Learn about ways you can participate in advocacy through our website, or by emailing email@example.com today!
Due to GAO’s advocacy efforts and that of our clients, employees, and industry partners, the Maryland legislature voted to increase Medicaid reimbursement rates for all home- and community-based services by 30% over the course of six years! In addition to traditional lobbying and grassroots advocacy efforts, the skilled nursing unit collaborated with GAO to deploy a public affairs campaign that led to home care clients’ stories being published in the Washington Post and Baltimore Sun, thus further showing legislators and the public the dire need for a Medicaid rate increase.
This monumental increase will enable BAYADA to compete for approximately 50% of the state’s LPNs, who are currently more attracted to hospitals and other settings where wages are higher. This in turn will enable BAYADA to better fulfill its vision of serving millions of people worldwide.
GAO anticipates that, as a result of this increase, the skilled nursing unit will open an office in 2020.
The facts are clear: Home care is less expensive than
hospital or other institutional care. Plus, it enables medically complex
children and adults to remain at home amongst their loved ones. But because the
State of South Carolina has not increased reimbursement rates for skilled
nursing home care services since 2008, families are finding it increasingly
harder to access the skilled, high quality care that they need to stay as
independent as possible in their communities.
State funding for home care has not been increased in more
than a decade. At the same time, hospitals and other facilities have been
steadily able to increase wages. Even more so, nurses can make more in home
care in surrounding states. Now, home care providers find that they can compete
for less than a quarter of all the nurses available in South Carolina. When
agencies face such recruitment and retention struggles, home care recipients and
their families suffer.
When there are less home care nurses available, families
find that they experience missed shifts, which can not only create undue stress
and chaos as loved ones must miss work, lose out on sleep, and forego other necessary
activities—but it also puts the client in danger. For those who need skilled
nursing care, missed shifts can mean dangerous consequences, including trips to
the ER and unnecessary hospitalizations.
Even more so, many major home care providers have already
left South Carolina because of the low funding for home care. Stagnant rates
that are more than a decade old make keeping their doors open unsustainable. As
more and more agencies leave the state, the harder it is for families to access
care. Simply put, if the State does not take action to increase funding for
home care, South Carolina’s most medically complex and vulnerable families will
have few options for care.
South Carolina’s concerned families are making their voices
heard: They are reaching out to their legislators and media to share their
message: Increase funding for home health care so that families can access the
high quality, reliable care that they need to be where they want to be: At
In North Carolina and across BAYADA’s GAO states, our legislative goals tend to revolve around two main tenets: First, achieving policies that streamline processes so that service offices can operate without added burdens and so residents can readily access care, and second, to increase reimbursement rates so that we can recruit and retain the caregivers necessary and ensure that we have the supply necessary to meet the demand.
It seems like common sense—North Carolinians want to stay in their homes, and home care services cost states less than care delivery in a different setting. So why can’t legislators simply fund home care programs at higher rates? The truth is that there are many competing interests and priorities, and limited amounts of state resources.
It is important to recognize the constraints with which lawmakers must work. Last year, Health & Human Services represented 22.4% of North Carolina’s nearly $24 billion state budget, second only to education, which represented 57.5%. Looking forward to the upcoming budget year, the state’s fiscal research arm reported that top budget pressures include: public schools, higher education, the state health plan, and Medicaid/Health Choice—meaning that there is a lot of pressure on the state’s already tight budget—and that’s not to mention the other interest groups we compete with, such as state nursing homes and other healthcare coalitions.
As GAO continues to garner legislative support for $29.5 million in state funds needed for the Medicaid rate increases we are seeking, advocacy efforts will play an important role. Please watch for ways to support our legislative ask, and please reach out to Mike Sokoloski at firstname.lastname@example.org to learn how you can get involved in advocacy on behalf of your staff and clients.
NC Bills we are following
To date, 824 bills have been filed in the North Carolina General Assembly this session. GAO continues to work through the proposed bills to evaluate their impact on home health care, home care, and hospice. Below are a few bills that are of interest:
Home care champion Representative Josh Dobson submitted the bill that extends the deadline by which certain providers, including home care and home health care agencies, must participate in and submit data to the state’s Health Information Exchange Network, NC HealthConnex. We commend the bill sponsors for this delay.
While participation in and submission to NC HealthConnex is
important and necessary in that it grants both the state and providers electronic,
timely access to demographic and clinical data, our industry and others provider
sectors do not have a consistent platform or an easy way to gather and transmit
the required data. Access to this data and clinical information will help the
state and providers identify spending trends that will facilitate health care
cost containment while also improving health care outcomes only if the data is
reliable and consistently reported.
This extended deadline proposed by House Bill 70 grants us
additional time to meet the reporting requirements. We thank all the bill signatories for
recognizing the administrative burden and granting additional time to meet the
The bill passed both the House floor on March 27, 2019 and is headed to the Senate.
2. H745– Medicaid Funding Request for Private Duty Nursing (PDN), sponsored by Representatives White, Lambeth, Adcock, and Cunningham
Our health care members, a home care nurse (White), a hospital administrator (Lambeth), a nurse practitioner (Adcock), and a hospice nurse (Cunningham), introduced H745 to increase the Medicaid funding for nursing under PDN from $39.60 to $45.00 by requesting $4.1M for 2019-2020 and $8.3M for 2020-2021 in recurring state funds.
As health care leaders, they recognize the importance our services play in keeping some of North Carolina’s most clinically complex citizen at home and out of more expensive settings. While the necessary funds were not allocated in the House Budget, we have an opportunity to get it into the Senate Budget and are continuing to advocate for this option.
3. H728– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth
This bill appropriates 500 Innovation Waiver Slots to address the waiting lists. It would support North Carolinians living with intellectual and developmental disabilities (I/DD) and help them receive needed services within their home and community. The bill proposes to appropriate $5.3M for 2019-2020 and $10,9M for 2020-2021 in recurring funds.
4. S361– Increase Innovation Waiver Slots, sponsored by Representatives Insko, Hawkins, and Lambeth
proposed bill attempts to address several different health care issues in one
bill. This approach makes it challenging to garner support in its entirety. The bill includes the following provisions:
Elimination of Certificate of Need (CON) – Any action that erodes the established process by which a need is determined may lead to destabilizing our health care industry. The established CON process allows for any group to apply for a Special Needs Determination should they feel health care needs are not being met in their community.
Establishes a carve-out for PACE organization – Any action that allows a group to be exempt from following Home Care Licensure Rules puts recipients at risk as the organization would not be required to follow health and safety rules outlined state licensure.
Medicaid Expansion – Any opportunity for the North Carolina’s working poor to have access to health care coverage, the better. This provision includes a work requirement with exceptions for individuals attending school and or deemed disabled.
Addition of Innovation Waiver Slots – Any opportunity for more individuals living with intellectual and development disabilities (I/DD) to have access to needed services, the better.
The introduction of this bill is the first step in a long process. GAO will continue to monitor and support the I/DD slot provision which aligns with our access to care goals. Some of the other items are very controversial because they create a slippery slope on oversight.
To find out what you can do to encourage your legislators to support the introduction of this bill, contact Lee Dobson at email@example.com.
As home care clients, employees, caregivers, and family members,
we know one thing for a fact: Home health aides do incredible, compassionate
work that enable hundreds of thousands of residents across the country to stay
at home and out of costlier, more infectious settings like nursing homes and hospitals.
And we certainly know another fact: The
work that aides do is invaluable, and it’s time that they begin to receive a
fair wage for the hard work they do.
Low aide wages have recently made national headlines and the message is clear: We will need more and more home health aides as America’s population continues to age. But home health care providers are having trouble recruiting and retaining the quality, reliable workforce needed to keep up with the growing demand.
Recently, Hearts for Home Care advocate and BAYADA Home Health
Care’s chief government affairs officer, Dave Totaro, submitted his opinion
on the matter to STAT News, a media company focused on finding and telling
compelling stories about health, medicine, and scientific discovery. He posed
“To say that home health aides’ work is demanding is an understatement. They make it possible for 14 million Americans to stay in their homes and out of expensive and impersonal institutional settings like hospitals and nursing homes. Performing this necessary and in-demand work takes a physical and emotional toll, yet these individuals do it with compassion day in and day out.
So why do we treat home health aides as low-wage, low-value workers?”
The problem lies primarily in states’ low Medicaid funding for
home care programs. Though states typically pay an hourly rate for providers
who deliver home health aide services, these rates have largely been low for
many years, or raised periodically, but at a rate too low to keep up with real
costs of living and providing services. Because these rates must cover wages,
training, benefits, new hire costs such as background checks and TB shots, and
supplies, it is nearly impossible for
home health care companies to take such a low rate and provide aides with a wage
high enough to compete with industries like fast food and retail.
News coverage of the issue has been effective in bringing greater public
awareness to the issue, especially as nearly all individuals will be touched by
home care at least once in their lives, whether it be for themselves, a parent,
friend, or other loved one. Now is the time to take awareness and turn it into
action. Call your state legislator and let them know what home care means to
you. Contact firstname.lastname@example.org for
information on what you can do to share your voice and support home health
Lawmakers returned to Raleigh on January 9 for the 2019-2021
long legislative session. We expect to
see some changes in committee assignments and leadership, especially in the
House Appropriations for Health & Human Service (HHS), with the election
defeat of Chairman Nelson Dollar.
Dollar–the former chairman of the House Appropriation
Committee—has transitioned from the public sector to a senior policy advisor to
the Speaker of the House Tim Moore.
Dollar has been a home care champion for years and was named BAYADA’s Legislator
of the Year in 2016 and 2018 for his efforts. He was instrumental in
securing much needed Medicaid reimbursement rates increases for nursing and
aide services. He has also been instrumental in protecting from elimination the
Certificate of Need (CON) process for our Medicare offices. His expertise and knowledge on complex issues
at the statehouse will serve North Carolina well. As you may recall, Dollar
lost his seat by 884 votes last November to Democrat Julie von Haefen.
While we are sad to see our former Champion lose this leadership position, there are other home care Champions that we anticipate seeing in key roles. We expect to see Representatives Donny Lambeth and Josh Dobson as co-chairs of HHS. Further, we anticipate Senators Ralph Hise and Joyce Krawiec in chair positions serving the Finance and/or Health Committees. All four legislators are well-versed in home care and the challenges our clients and staff regularly face throughout North Carolina due to our collective advocacy efforts. This puts BAYADA in a great position to move forward with our next round of asks.
Our major reimbursement priority this session is to increase the Medicaid private duty nursing (PDN) rate from $39.60 to $45.00 over the course of two years. This increase is necessary to help us recruit and retain the high quality, compassionate nurses we need to care for the many North Carolinians that need skilled care to stay at home.
Sharing your voice is key to achieving our goals: Be sure to look for opportunities to advocate as we seek to support our clients and staff. Of note, please save the date and be sure to look out for communications regarding our Legislative Day, which will be held in Raleigh on May 1.
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.
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 email@example.com.
Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.
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.
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!