Client Spotlight: Read About our NJ Clients and their Beloved Caregivers

ACSP Clients Jessie and Marie, and the impact their caregivers Indira and Marie make in their lives

HHA Indira (right) has made monumental changes in Jessie’s life

GAO and many other advocates are fighting for increased funding for New Jersey’s Personal Care Assistant (PCA) program. This program enables thousands of vulnerable New Jersey residents stay at home, and we are hoping that our advocacy efforts lead to fairer wages for caregivers like Indira and Michele.

Indira & Jessie

Indira is at Jessie’s home every morning at 5:00 without fail. After taking on Jessie’s case and learning that she spent most of her time in bed, it became Indira’s mission to consistently challenge her to get out of bed and get active. Now, every morning before dawn, Jessie starts her morning with a smile, anxiously waiting for Indira to arrive.

While helping Jessie, who is 31 and diagnosed with cerebral palsy, with her activities of daily living, Indira also incorporates games, crafts, dancing, and singing. After a few short months with her beloved caregiver, Jessie now has a newfound confidence in her physical abilities and communication and language skills. Indira has quickly ingrained herself as part of Jessie’s family, whose loved ones call Indira “a Godsend.”

Marie & Michele

CHHA Michele (left) is “like a daughter” to her beloved client, Marie

CHHA Michele has been with her client Marie since January of 2017, but you would think they have known each other forever. They share a special bond, and Marie even says that Michele is “like a daughter” to her. Marie lives alone, and if not for Michele’s visits, would be lonely and potential in danger. In addition to the personal care services that Michele provides to keep Marie safe and healthy, you see their bond shine when Michele frequently makes puzzles and quizzes to stimulate Marie’s mind—or as they like to call it, “using our noodles.”

Marie says that without Michele, she would not be fully able to take care of herself. But As soon as Marie arrives at Marie’s door, the time flies as Marie keeps her on her toes—both figuratively and literally. In addition to regularly stimulating Marie’s mind, Michele makes sure that Marie is safe and on balance as she moves around her apartment.

We need your help in supporting dedicated caregivers like Indira and Marie through advocacy. To find out ways you can get involved, email advocacy@bayada.com today.

“Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” Two moms share how PDN impacts their families’ lives

This year, our major focus in New Jersey is to fight for higher reimbursement rates for New Jersey’s Private Duty Nursing (PDN) program. One of the most impactful ways to influence legislators is to engage clients and families into advocacy through testimony, which is delivered by these clients to legislators who are in key positions to influence legislators. Below, find powerful excerpts from two moms who support a PDN increase on behalf of their children and their families.

Dana I. – Mother to BAYADA Client, Abi

PDN services help Abi stay safe and healthy, and helps her whole family stay together at home

“There is truly no way to explain on how much caring for a medically fragile child impacts a family. Every errand, every event, every move of your day becomes centered around their care. Abi has been authorized for skilled nursing care by our insurance company, yet she still has five or more unfilled shifts every week.

Lapses in nursing coverage put tremendous pressure on our entire family—we often have to miss work and stay home to provide for her care, putting strain on the family finances. Lost nursing hours also means the entire focus of our time becomes all about our medically-fragile child, and the balance between the other children becomes strained and we often miss beloved activities or events.

Abi is not a child that we can just hire a babysitter for. Her high level of care and constant need for monitoring makes it impossible to have any sense of normalcy without capable & consistent nursing support. There are simply not enough nurses in home care to cover all of the needs of my family and the needs of many, many others.

Institutionalized care is not the answer. My precious daughter brings many challenges to our home, but it would be heartbreaking to have to put her in an institution for lack of nursing support. So here I am prayerfully putting a name and a face to those of you who have the power to make a real difference in this area. Competitive wages would bring stability to her home care nursing and allow our family and families like us to stay together and thrive.” -Dana Insley, Abi’s mom   

Emma K. – Mother to BAYADA client, Lili

Client Lili (left) loves her compassionate and reliable nurse Barbara

“While I count my blessings that we have the right nursing team in place, I often think of the families across the state that can’t fill their nursing shifts. It takes me back to the last time our scheduled nurse had a family emergency and there was no other nurse available to cover her shift. As a single mother of a medically-complex, ambulatory child with no family in the area, you can imagine how it plays out when there isn’t a nurse available for Lili: I have to call out of work myself and cancel any commitments I’ve made for the day. I can’t get the groceries that I was planning to pick up or even do a load of laundry since I can’t leave Lili alone for even a minute. And I have to again plan to do these things during the times I’m expecting to have a nurse to stay with Lili because I can’t get them done otherwise.

We as a society have developed a system of reliability for our communities: Teachers help children learn, police keep our streets safe, ER doctors save lives, and pharmacists fill our prescriptions. But we are failing in keeping home nursing readily available. Just as a prescription, Lili’s care is prescribed by her doctor and authorized by the state. But we cannot rely on its availability. I hope that our state decision makers prioritize home care, if solely for the fact that it keeps children like Liliana at home and keeps families together. Parents deserve to be parents, not skilled nurses, and more importantly, children deserve to be children—not patients.” -Emma K., Liliana’s mom

Dana and Emma exemplify the power of sharing your story. If you’d like to highlight the powerful story of your experience in a home care office, or the story of a client, their loved one, or a caregiver, contact advocacy@bayada.com.

Delaware Sets Grassroots Advocacy Records in 2019!

More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!

Delaware Ambassadors and employees have set participation records at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).

The first, the Delaware Association for Home and Community Care (DAHCC) Legislative Day on March 13, had a record attendance of more than 50 attendees! 41 registered for the event, which would have been a record itself, but the larger-than-expected turnout was an impressive surprise. Seven providers, including BAYADA, were represented, and the crowd included six families advocating for themselves and their nurses. Everyone wore their own company’s branded gear but united behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.

BAYADA employees made their voices heard in front of the DE Joint Finance Committee

In another first for Delaware, two legislators spoke in support of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House Majority Leader, Representative Valerie Longhurst. Both spoke passionately about the importance of home care in our communities and the need to increase reimbursement to ensure that this vital care is available to those who rely on it.  They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.

A week later, on March 20, Delaware advocates broke another record when 15 members of our community testified before the powerful Joint Finance Committee (JFC) in support of increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott, Danielle Myers, Shannon Gahs, Dave Totaroand representatives from Epic/Aveanna and Maxim/Aveanna.  Client Haley Shiber was unable to attend in person but sent a powerful testimony video to the JFC members before the hearing. The Joint Finance Committee hears budget requests from all state agencies and testimony from the public before making an annual budget recommendation to the full General Assembly. The General Assembly frequently follows the majority of those recommendations. Members of the committee told BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!

The industry-wide coalition led by BAYADA and DAHCC is pushing the Delaware legislature for a 21% increase in the Medicaid home care RN and LPN rates, which would impact our Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less than Medicaid fee-for-service, these new higher rates would have to be paid not only for “straight Medicaid” hours but also those funded by managed care in Delaware. These two rates currently remain at their 2006 levels, harming our ability to recruit and retain the highly-skilled RNs and LPNs that are so important to the lives and welfare of our clients.

Thank you to our advocates who turned out and made sure that Delaware’s decision makers know that we are here to advocate on behalf of our staff and clients, and that home care makes a difference in the lives of so many Delawareans!

Why Client Advocacy Matters

 

BAYADA client Carly (front) is pictured here with NJ Assemblyman Anthony Bucco (right) during a legislative home visit, which served to familiarize the assemblyman about how home care affects his constituents. Carly and her mother Christina (left) also testified at a legislative hearing in Trenton about the need for increased Private Duty Nursing (PDN) rates.

 

 

 

 

 

 

 

 

 

 

 

 

 

Client advocacy matters more than that of home care industry professionals. While home care professionals can share facts and figures about home care with legislators, it is clients’ stories that truly paint the picture of what home care means to legislators’ constituents.

Whether a home care client is an infant, senior, or any age in-between, it is very likely that the nursing or aide services that they rely on is from a Medicaid or Medicare program.  What this means is that government officials are the ones making the decisions on care regulations and reimbursement rates rather than those who are regularly affected by home care.  Home care providers must accept these rates and regulations and provide care to the best of their abilities based on what the government has set forth rather than on what is actually best for clients and their families.

Home care employees regularly see that many of the government reimbursement rates for home care are low and have not been increased in years. This has a domino effect in that if providers can’t bring more revenue in, they can’t pay higher rates to attract more staff to care for current clients or for new clients who will need care in the future.

Many areas of our country are starting to age and will need caregivers to allow people to live in their homes instead of in facilities, yet projections indicate fewer people want to be professional caregivers due to the industry’s low wages. Additionally, more nurses are choosing employment in other types of settings, which makes it difficult for many home care clients to have adequate nursing coverage because facilities such as hospitals can pay nurses a higher wage.

As elections come and go, we see changes in our government leaders and with these changes come the possibility of healthcare policy changes. These changes can be sudden and unpredictable, and these changes often threaten funding cuts to important programs such as Medicaid or Medicare. Any funding cuts to these programs would be devastating to home care providers and to program beneficiaries.

The interesting thing is that the representatives and senators who we vote for at the state and federal level make these decisions, and few of them have strong healthcare backgrounds.  In addition, it is their job to represent all of the people from their respective districts to the best of their abilities. While provider employees can share their voices through legislative meetings, clients’ and their family members’ advocating and sharing their stories matter most.

Clients who benefit from home care and their family members have their own special stories to tell.  As the end users of nursing and aide services, clients and family members have the first-hand knowledge of how the Medicaid and Medicare programs are working and what could be done to improve them.  Clients names, faces, and shared stories paint a far more detailed picture of home care than industry professionals can with facts and figures. When legislators vote on issues related to home care, clients stories are better-remembered, and legislators are much more likely to vote for favorable home care policies with these in mind.

“I’ve been an advocate for my wife, who is 100 percent dependent, for 16 years,” said Mike Pollock, the husband of a client who advocates to protect home care for his wife and all who need services.  “Thanks to Medicare and Medicaid and BAYADA, I’ve been able to care for her at home.  Although Medicare and Medicaid are excellent resources, they have their issues.  An excellent resource for solving these issues are our elected officials,” Pollock said.  “In fact, elected officials are the only people capable of fixing issues that arise within Medicare and Medicaid. But they can’t help if they don’t know what we as family caregivers are dealing with every day.  Never hesitate about reaching out to them. It’s been my experience they are eager to help,” Pollock concluded.

By putting advocacy into action and connecting our clients to their elected officials, there is a far better chance that Medicaid and Medicare will be protected and grow with the needs of our clients. Please email me at rhynick@bayada.com for more information related to client and family advocacy and what you can do to help protect and strengthen the home care industry in your state and at the federal level.

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!

Delaware Rate Floor Bill Passes House Committee

Submitted by Shannon Gahs, Associate Director, DE Government Affairs (GAO)

Following compelling testimony by clients Nancy and Christopher Lemus, Delaware Association for Home and Community-based Care (DAHCC) President Bob Bird, Delaware Pediatrics (DP) Associate Director Mandy Brady, and myself, the House Health & Human Development Committee passed a bill that would set a minimum reimbursement rate paid by Medicaid managed care organizations (MCOs) to home health care providers for skilled nursing services.
Representatives asked probing questions, sparking true debate over the measure. The vote was 10-0 with 4 additional members absent. The bill must still pass the full House, the Senate Health, Children & Social Services Committee, and the full Senate. The legislature closes on June 30. If this bill passes, MCOs would not be able to pay any less than the Department of Health and Social Services (DHSS) pays for the same care, giving DHSS the ability to ensure access to needed services.

Nancy Lemus giving testimony at the hearing

Delaware: Moving Forward In 2017

Submitted by Shannon Gahs, Associate Director, DE Government Affairs (GAO)

Governor John Carney took office in January, inheriting a budget deficit of $350 million.  As a result, the General Assembly is reviewing all planned expenditures for 2017.  I attended public hearings on all parts of the budget affecting the Department of Health and Social Services and testified on the need for a rate floor in Medicaid-contracted services.