The Heart of Client Advocacy: How You Can Make a Difference

Home care client advocates for his disabled wife and his home health aide
Mike Pollock (left) advocates on behalf of his wife Kathy (center in red) and Kathy’s aide Alma (standing)

Imagine this scene: A woman feels a familiar, nagging stiffness in her lower back as she leans over the edge of the tub to bathe her teenage daughter. Her daughter, who has a significant degenerative muscular disease, sits quietly and securely on a customized bath chair that fits snugly inside the tub. The tub area is decorated with different pieces of adaptive equipment such as a specialty grab bar, floor mat, hand-held shower head, and other items to make the bathing process possible for a person who cannot physically jump in and out of the shower. From start to finish, the entire bathing process takes more than an hour to safely complete.

Whether it is giving a bath, doing a tracheostomy change, starting a gastronomy tube feed, or transporting someone with multiple pieces of medical equipment, families who care for a loved one with a significant medical condition live a vastly different lifestyle than many other families. This lifestyle is not easily understood unless you’ve experienced it.

Legislative advocacy makes a difference

We have learned that when our clients and families talk to our elected officials and the people who make decisions about health care funding and regulations, it makes a difference. We have seen clear evidence across our country that when more people speak up, creating a stronger and louder voice, it is more likely that government-funded insurances—such as Medicaid and Medicare—will adjust funding and regulations to benefit families.

Many of our elected officials have personally not had the experience of bathing an adult child, performing a tracheostomy change, or providing the other types of medical and personal care that are frequently needed in the home. It’s also sometimes forgotten that this care is not just provided once a week or month, but many times a day or week, over years—over a lifetime. The continuous nature of these care needs is what makes home health care services so necessary.

We consult with legislators and insurance officials and ask for increases in our reimbursement rates so we can hire more employees and reduce open shifts for our clients. Our requests often are not approved. However, when the families who actually use the home care services join with us, it makes a big difference.

When clients and families explain why it is important to them not to have open shifts or why their paid caregiver needs a better wage, and share their personal experiences from within the home, it helps these officials understand the need for home care. The people who we petition for increases and better regulations are the same elected officials you vote for, and who are entrusted with serving the best interests of those they represent. This is at the heart of how and why people gathering and joining voices can make a difference. This is the heart of client advocacy.

How can you get involved?

Think about your personal experiences and consider what it’s like to care for a loved one who is in your home or nearby. Let’s unlock those firsthand experiences about the difference a home care nurse, aide, or therapist makes in the care that your loved one needs or receives. Voices of families coming together can create opportunities. Better insurance reimbursement can help us recruit more nurses and aides to fill open shifts. Better wages can mean a more sustainable career for home care workers, which in turn allows more people to remain at home while they receive the care they need.

For more information about how you can join the movement for a better tomorrow for home care, visit our website and sign up to be a Heart for Home Care today.

PA Offices Submit Home Health Aide Nominations to PA’s Direct Care Worker of the Year

2017 BAYADA Direct Care Worker of the Year Nominees

Each year the PA Department of Aging and the Pennsylvania Homecare Association select one home health aide to be named Pennsylvania’s Direct Care Worker of the Year.

Last year BAYADA nominated 14 Home Health Aides (HHAs) and one of our nominees, Anne Pannone, was selected at PA’s Direct Care Worker of the Year.  Since her selection, Anne was awarded a cash prize of $1,000 and has been invited to several statewide events to discuss the meaning of being a HHA and the value it provides to the state.

To help ease our service offices’ workloads, GAO is working with EMP to submit this year’s HHA nominations using information provided through our Hero program.  To date, over 15 home health aides have been nominated to be this year’s Direct Care Worker of the Year.

All nominees will be invited to the 2018 Direct Care Worker Forum, which includes a luncheon and half-day training program on March 28.  A stipend will be given to all HHAs attending the Forum.

BAYADA Meets with NJ Governor Chris Christie

Submitted by Louise Lindenmeier, Director, NJ Government Affairs (GAO)

Chief Government Affairs Officer Dave Totaro, State Assistive Care Practice Leader Eric Thul, and Director, Strategy & Value-Based Partnerships Matt Lippitt met with New Jersey Governor Chris Christie to discuss the recently signed law which sets a floor for minimum reimbursement under managed Medicaid for Personal Care Assistant Care.  Our team explained the challenges under managed Medicaid, how reimbursement is used to support personal care services, and the wage needs of the home health aides.  The meeting was very informative for both the Governor and us, and served as an excellent start towards addressing the unintended consequences of the Governor’s conditional veto.


Photo: Matt Lippitt, Eric Thul, Governor Christie and Dave Totaro

NC: Together We Get Results

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

Legislative successes, like the Medicaid rate increase for nursing last year and the home health aide increase this year, don’t magically happen.  Legislative successes start with an identified need — low Medicaid rates made it impossible to pay people what they are worth — and end with legislators supporting jobs in the community and keeping families together by investing in home health care.  Every step along the way, our Hearts for Home Care ambassadors carried our unified message to decision-makers.  Our cumulative actions over the years, including home and district visits, legislative round tables with lawmakers, responding to calls to action, attending lobby days, etc., made all the difference.  Individually and collectively our shared voices got results.  Join us to be a Heart for Home Care ambassador.

NJ Home Visit Sheds Light on Need for Home Health Aides

Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)

Perth Amboy (PER) Client Service Manager Julia Nelson and I had the pleasure of meeting with PER client Joseph P. and his mother Bernadette at their home in Manasquan.  We were joined by Assemblyman Edward Thomson and Director of Constituent Services Kerry Textor.  As a client in the Personal Care Assistant (PCA) Program, Joe told the Assemblyman how much he loved his home health aide Alice.  Bernadette shared that she is an 86 year old mother caring for her 57 year old son who has multiple sclerosis.  PCA services are vital to her ability to keep Joe at home as he wishes. Unfortunately, they are not always able to get someone to cover the hours authorized due to the difficulty of recruiting aides in the Monmouth County area.  The Assemblyman, who is new to the office, offered to look into what additional services or supports they may be entitled to in order for Joe to remain with his family.

Photo (left to right): Julia Nelson, Bernadette P, Tara Montague, Joseph P, Assemblyman Thomson
Photo (left to right): Julia Nelson, Bernadette P, Tara Montague, Joseph P, Assemblyman Thomson

NJ Personal Care Assistant Floor Bill Finally Signed into Law!

Submitted by Louise Lindenmeier, Director, NJ Government Affairs (GAO)

Governor Chris Christie, signed into law A320/S1080, which sets the Medicaid managed care rate at no lower than the state’s fee for service rate for personal care services.  The Governor had conditionally vetoed the original bill in July, adding stipulations in regards to funding, wage mandates, and an effective date.  With the new stipulations as law, the Government Affairs Office (GAO) will be working with our lobbyist and bill sponsors to introduce a new bill to restructure the governor’s changes with new language, which we believe will be better for the industry and our home health aides.

 

NJ Advocacy Week- Advocacy at its Best!

Submitted by Louise Lindenmeier, Director, NJ Government Affairs, (GAO)

NJ GAO held its first Advocacy Week, May 1 – 5, as Ambassadors met with 25 legislators. Throughout New Jersey, 67 office employees, two home health aides, and two clients spoke with legislators about the difficulties of attracting and retaining nurses, covering hours for private duty nursing, and the need for higher reimbursement for the Personal Care Assistant program under managed Medicaid. The aides told the legislators how much they love their work but can’t make enough to support their families. The clients spoke about how important their aides are by providing care, and, if not for the aides, they would be in long-term care.

As part of the advocacy week, office staff participated by sending out 408 emails to state legislators regarding the importance of home care. The message asked the legislators to support a reimbursement floor rate in managed Medicaid. Everyone who met with legislators expressed how much they enjoyed the experience and how good it felt to advocate for our clients and families.

 

NJ Client Advocates for Our Aides

Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ (GAO)

On May 26, as part of the Home Care Association’s Advocacy Day, our client, Victor Muniz, spoke during a press conference held by Senate Majority Leader Loretta Weinberg. Victor, who receives personal care assistance through the Jersey City (JC) office, shared the importance of home health aides in his rehabilitation and his ability to live independently. In addition, William Chambers, father to Perth Amboy (PER) client Billy Chambers, spoke about how home health aides enable him to continue to care for his son at home, but there is a strong need for increases in reimbursement rates. He stressed that aides are simply not paid enough money for what they do.

Mr. Muniz was also interviewed by a reporter from NJ Spotlight about this issue.

Realizing There are Differences

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.

Successful Storytelling at the North Carolina Legislative Day

Submitted by Mike Sokoloski, Grassroots Advocacy Manager, GAO

​On Wednesday, May 17, more than 60 BAYADA employees and one client arrived in their red attire to advocate to the North Carolina legislature, effectively communicating the importance of home care through storytelling to more than 110 legislators! We gathered on the red carpeted steps of the General Assembly to honor our Legislator of the Year, Senator Tommy Tucker. He has been a steadfast supporter of home care. Last year, he inserted language to increase the nursing rate by 10% for medically fragile children.

Click here to access our Hearts for Home Care Advocacy photo album on Facebook. >>
“While the medical condition of your clients puts them at high risk for hospitalization and placement in nursing homes, they deserve to stay at home, and they can with support of home nursing,” said Sen. Tucker. “The work that you do helps North Carolinians have a better quality of life, and saves the state tremendous amounts of money. We absolutely need to invest in these services.”

Speaking to the vital importance of advocacy, Chief Government Affairs Officer Dave Totaro said, “We must continue to recruit new voices to create the movement necessary to protect and retain benefits critical to the care of our clients. BAYADA has always led the way and we will continue to do so.”

I had the privilege of being joined by a new BAYADA employee, Gastonia, NC Pediatrics (GP) Client Services Manager Foster Krebs. He made an immediate connection with Sen. John Alexander with a story about a client family’s struggle, noting that we cannot retain field staff on one of his pediatric cases.

 

“After the first visit with Representative Hurley,” said Foster, “I was less anxious and felt more comfortable. In fact, once I realized my story resonated with lawmakers, I was able to enjoy myself.”

Keeping this engagement with legislators throughout the year is vital as well. Legislative Day is just a start to the numerous district visits, town halls, and home visits to come in 2017.

“I’m so proud of our staff,” said Area Director of Government Affairs Lee Dobson. “It was clear they had powerful stories to tell and were telling them. Their enthusiasm was contagious and in true BAYADA fashion, our smiles were seen and felt.”

We were there to seek an increase to the Medicaid aide rate from $13.88 to $17.00, over two years, and to communicate how one-on-one in-home aide services can help reduce health care expenditures by minimizing costs associated with falls, ER visits, and re-hospitalizations, and prevent or delay institutionalization while preserving quality of life. Home care also creates jobs in the community and allows families to continue to work, while being a cost-savings to the state.

This was understood by Senator Andrew Brock, who said, “I understand why you are asking for the increase. You won’t find the people to do the work at what you’re able to pay. This is a worthwhile allocation.”

A special thanks to Raleigh, NC Adult Nursing (RAN) Transitional Care Manager Paulette Troy for being the Legislative Nurse of the Day. For her volunteerism, she was recognized in both the House and Senate chambers, who said, “It was a privilege to represent BAYADA.”

Advocacy is an important role in the political process. We appreciate our advocates for making the time to be the voice for our staff and clients by sharing our stories. The General Assembly was a sea of BAYADA red. Thank you!