On April 9, more than 300 home care advocates—clients, families, caregivers, and employees—joined the Pennsylvania Homecare Association (PHA) at the state capitol in Harrisburg. Advocates met with hundreds of the state’s representatives and senators to deliver an important message: Home care is important to me, and it should be important to you too.
Check out pictures from the legislative reception, the kickoff rally, legislative day meetings, and the PHA press conference! Care about home care and want to share your voice? Check out heartsforhomecare.com or email firstname.lastname@example.org to find out how you can get involved in advocacy today!
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.
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.
In December at the BAYADA Home Health Care Champion Awards we reflected on a year of many victories and looked ahead to a new year with new challenges. Speakers, awardees and nearly 100 guests celebrated the successful increase of NJ’s fee-for-service rate for personal care assistants to $19 per hour. We also acknowledged employees’, clients’ and home care industry friends’ commitment to advocacy. These efforts led to the passage of A320/S1018, which was signed by Governor Christie earlier this year. Effective this July, A320/S1018 requires Managed Medicaid reimbursement rates for home health aide services to be at or above the state’s fee-for-service rate.
An inspirational highlight of the night, those in attendance were moved by Dana Insley’s touching speech. Dana is the mother of a young client who had a difficult start to life. Dana’s daughter was placed in foster care before being adopted by the Insley family. Dana spoke of the blessing home care has been in her family’s life and discussed the significant improvements her daughter has made with the support of her BAYADA nurses.
The evening’s honorees, Lieutenant Governor-elect Sheila Oliver, Senator-elect Declan O’Scanlon, and Assemblywoman Nancy Muñoz were visibly moved by Dana’s remarks and reiterated their support for home care during their acceptance remarks.
Also honored at the ceremony was Assemblyman Paul Moriarty, who represents New Jersey’s 4th District, which encompasses the Insley family’s home. Assemblyman Moriarty had visited the Insleys home in the past and was able to glean a full and meaningful understanding of the day-to-day life of a child receiving home care.
After a heartfelt evening that reminded everyone of our purpose and why we do what we do, Chief Government Affairs Officer David Totaro took the stage to remind all of those in attendance of the importance of advocacy and that, in addition to words, action is needed. He noted the huge impact of New Jersey advocates, who sent nearly one-quarter of all messages directed to federal legislators this summer from BAYADA’s network during the health care reform debate. Thank You for your commitment to advocacy.
Submitted by Rick Hynick, Director, Client and Family Advocacy
I recently met with a mother who has a teenage daughter suffering from a severe degenerative muscular condition. The mom wants people to realize that caregivers are extremely important to a person with special medical needs. She explained that the average person can use a bathroom in a minute or two. Even with a caregiver, it takes 15 to 20 minutes for her daughter to use the bathroom, with the maneuvering of her wheelchair in the tight layout of a bathroom and just trying to safely get on and off of the wheelchair. The mom asks that we all slow down and think about the importance of the many daily tasks that we all need to undertake and support caregivers in every way possible.
Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)
Through the efforts of Hearts for Homecare Ambassador and Director Miriam Mercado, State Assemblyman Jamel Holley made a visit to the home of Tony Ufie, a client of the Union county office. Assemblyman Holley was very moved by the client’s story and the many issues his family has been plagued with since the onset of his illness. He was so touched, he has committed to assisting the client and his family in any way possible. By the end of the visit, Assemblyman Holley asked Miriam to send him the details of everything that was discussed so that he can address each concern accordingly. He also mentioned that he wanted to highlight the work that we do on his social media accounts. Assemblyman Holley’s sincerity was palpable. The family is very grateful and seemed hopeful that things were going to finally start looking up for them.
Submitted by Rick Hynick, Director, Client and Family Advocacy
I was recently accompanying a mother and her daughter who require home care services to the state Capitol to meet with elected officials about a rate increase, to help attract more nurses to home care as the mother/daughter team are in urgent need of help. As we went from one meeting to another, I kept thinking about how much I admired the mother for her determination as she needed to push her daughter’s wheelchair everywhere we went. As we neared the office location of our last meeting, we encountered a set of stairs and a wheelchair lift that was not functioning. Instead of not attending the meeting, the mother accepted help from another person and we worked together to get the family beyond the obstacle and to the meeting where much success was encountered.
Submitted by Shannon Gahs, Associate Director, MD Government Affairs (GAO)
Last week, Chief Government Affairs Officer Dave Totaro, the newest member of the Government Affairs Team Grassroots Advocacy Manager Mike Sokoloski, and I went on a tour of every service office in the state. We discussed current events in federal and state politics and shared how BAYADA has impacted policy decisions while getting to know the dedicated employees we have across the state. We were overwhelmed by the outpouring of support and interest employees had in getting involved as ambassadors. For more information on advocating for our clients and employees, reach out to Mike or me!
Submitted by Rick Hynick, Director, Client and Family Advocacy
Today, I had a meeting with the Adult Managers of Clinical Operations (MCOs) at the Wilkes-Barre/Scranton (WBS) office. The meeting covered a full day agenda of topics such as new and changed practices, education on products, shared practices that have been effective and a section on quality. I presented an overview of the Client and Family Advocacy program and the advantages that service offices might see when being involved with the program. I also presented the many different ways that clients and family members of clients, such as adult children of waiver clients, can be involved in advocacy and take steps to help achieve goals such as rate increases and improvements to regulatory policy.
Submitted by Laura Ness, Director, PA Government Affairs (GAO)
Each year the Government Affairs Office (GAO) selects one outstanding Ambassador as their Rookie of the Year. The individual honored must be a new Ambassador who has made an impact on clients’ lives and on the Ambassador program.
As GAO discussed the nominees it was evident that Berks County Visits (BRK) Nurse Trisha Lasher was the clear winner. Trisha is an RN and was BAYADA’s first field employee to serve as a Hearts for Home Care Ambassador.
While she was nervous about her first meeting with a legislator, she decided to keep her commitments as promised and do it on her own. We are so happy she did because she hasn’t stopped since. Trisha started by visiting Representative Jim Cox (R) in his district, and followed up with him later that year in Harrisburg at Lobby Day. She wrote about her experience in the BAYADA Bulletin, which prompted a joint home visit with Representative Cox and the Reading Adult (RAD) Office. Because of the relationship she has built with Representative Cox, he took immediate action to help an adult client when he visited her.
The client had been trying to get a chair glide installed in her house for five years. After the visit, Representative Cox made several calls to service coordinators, found systemic fraud and flaws in the system, and was able to get the client the chair glide within six weeks of the home visit.
Building on their relationship, Representative Cox agreed to write letters of support for our pediatric rate increase and the Medicaid spend-down issue.
To further her advocacy efforts, as election time rolled around and GAO hosted the Bring the Vote Home Campaign, Trisha enlisted the help of all the office staff to call all clients. They educated clients on voting, the PHA voter guide, and let them know about absentee ballots. Trisha then organized field employees to deliver absentee ballots.
From building relationships to advocating for clients’ needs, Trisha has shown her dedication to being an excellent Hearts for Home Care Ambassador.
Honorees traveled to Washington, DC to celebrate their achievements. They enjoyed a private festive reception before heading to dinner and the awards presentation at a local restaurant. Senator Tom Carper joined the group to address some of the major issues affecting health care at the federal level, and to congratulate our Ambassador of the Year awardees. Before heading home, Ambassadors and their guests also spent time touring the city with stops including the White House, Jefferson Memorial, Lincoln Memorial, and the US Capitol.