NJ Blog Takeover: Paraplegic Keith Braswell writes about his life with a severe disability – and how working with his aide through NJ’s Personal Care Assistant (PCA) program has helped him to live life on his own terms.
My name is Keith Braswell and a car accident in 2008 forced my entire way of life to change. I was left paraplegic and since then, I have been able to remain a vital, active member of my community thanks to the help of my home health aide, Quisela. As a 46-year-old adult, it can be tough for me to rely on someone else for everything from getting out of bed, bathing, eating laundry etc., but Quisela does everything she can to make sure that I feel safe and comfortable.
While Quisela is very reliable, filling all of my state-approved 40 hours of care without a day off, her choice to stay working as a home health aide is becoming more unrealistic by the day. This is because New Jersey’s Medicaid reimbursement rates under the Personal Care Assistant (PCA) program—the one that I and thousands of others like me rely on—don’t allow for aides to make a fairwage for the compassionate work they do. For example, in Newton, aides make minimum wage to slightly above minimum wage, and can often secure jobs with less required training, stress, and physical requirements at places like Walmart, Home Depot or Dollar General—all of which are located within the municipality or along route 206. This is especially true since NJ raised minimum wage in the beginning of year, while the Medicaid reimbursement rate remained stagnant.
I am beyond appreciative of how important Quisela’s vigilant and caring work is to my life, and I frequently go out of my way to make sure she is paid as much as possible, like booking my recent surgery around her vacation time to make sure that she wouldn’t lose any hourly pay. If I were to ever lose my aide, I would likely be forced into an institution which means losing what remains of my independence along with the quality of one-on-one care that I receive at home.
I humbly ask that the state legislature consider an increase in Medicaid reimbursement rates, so that individuals like myself can continue to choose to live independently at home. Many choices were taken away from me because of my injury, and losing this choice as well would be heartbreaking for myself and for thousands like myself across the state of New Jersey.
-Keith Braswell, Newton
About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email firstname.lastname@example.org.
Throughout 2019, GAO and New Jersey home care clients, employees, and industry partners battled the state government on the state’s minimum wage increase. BAYADA has been a staunch supporter of an increased minimum wage, as home health aides’ roles are vital to the community and require compassionate, excellent, and reliable workers. However, GAO and other advocates worked to show legislators and stakeholders why a Personal Care Assistant (PCA) Increase was necessary for providers to be able to continue to recruit and retain these valuable workers.
Advocates’ efforts resulted in a much-needed $2 per hour increase to the PCA rate—but the battle wasn’t quite finished yet. The legislature had also included language that would require 100% of the increase to be passed through directly to aides’ wages. While such a mandate was admirable in spirit, in practice it would have the potential to crush the state’s home care industry as a whole. After additional advocacy from GAO, staff, and industry partners, this pass through was successfully eliminated in December 2019.
In 2020, one of GAO’s primary goals in New Jersey is to continue to battle for further increases to the state’s PCA rate so that BAYADA can continue to pay wages to recruit and retain quality aides as the state’s mandatory minimum wage continues to increase.
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 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 email@example.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
“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
“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 firstname.lastname@example.org.
BAYADA’s Government Affairs Office (GAO) is proud to join with fellow advocates like you to continue to advocate for better wages for our caregivers and increased access to home health care for the tens of thousands of New Jersey residents that rely on this care to stay safe and independent at home. Thank you to our many employees, clients, and families who have advocated on behalf of yourselves, your loved ones, your staff, and your clients regarding our two major 2019 issues:
1. Personal Care Assistant (PCA) Program – Increased Reimbursements for Increased HHA Wages
GAO is working in collaboration with other providers and the New Jersey Home Care and Hospice Association to educate our legislators on the importance of adequate funding for the Personal Care Assistant (PCA) program.This is especially important as the State recently mandated an increased minimum wage. BAYADA supports a wage increase for all of our home health aides (HHAs) for the incredible, lifechanging work they do—but additional advocacy is necessary so state legislators understand the importance of proportional PCA program funding so that providers like BAYADA can comply with the new mandate and stay sustainable.
Click here to check out how HHA Indira helps her client Jessie stay at home, and about CHHA Michele’s special bond with her client Marie. We are hopeful that our advocacy efforts can lead to a fairer wage for aides like Indira and Michele, as well as better recruitment and retention rates across the ACSP practice so that all New Jersey residents who need this important service can access it. To find out how you can get involved, email email@example.com today.
GAO is working with the New Jersey Home Care and Hospice Association to educate our legislators on the importance of adequate funding for the Private Duty Nursing (PDN) program. Current PDN program funding makes it difficult for providers like BAYADA to recruit and retain the nurses necessary to care for New Jersey’s most medically complex and residents. This difficulty results in significant access to care issues, as only 85% of scheduled hours are currently filled, and vulnerable New Jersians are going without the care they need to stay safe and healthy at home.
We are lucky to have home care supporters in the legislature who understand the struggles our caregivers and skilled nursing clients face—Recently, Bill S1733/A4575, which proposes a $10 per hour increase for RN and LPN home care services, was introduced. In addition to the increase, this bill also seeks to establish a “rate floor” so that managed Medicaid providers reimburse no less than the state fee-for-service rate for in-home skilled nursing services.
But we need your help in getting this bill to the finish line. Soon, this bill will be up for a hearing, and clients’ and employees’ testimony make the most impact in showing legislators the challenges that arise from inadequate funding and the associated access-to-care issues.
Click here to read excerpts from two clients’ testimonies regarding the importance of PDN in their lives. Powerful stories like the ones Dana and Emma share help our advocacy efforts and show legislators the impact of home care in making a real difference in vulnerable New Jersey residents’ lives. To find out how you can get involved, email firstname.lastname@example.org today.
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 the question:
“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 email@example.com for information on what you can do to share your voice and support home health aides.
It’s undisputable: Home health aides provide a lifeline to millions of Americans that need assistance living where they want to be—at home. But low wages often disincentivize home care workers from staying in the field. The problem lies in Medicaid reimbursement rates: Home health aides rely largely on state-determined Medicaid reimbursement rates for their wages, and those rates have stagnated well below the cost of living—and many states have not addressed this in years.
Luckily, many states have proposed increasing the mandatory minimum wage. And while many businesses often oppose such measures—many home care industry leaders have come out in support of it because they recognize the importance of aides in helping keep people at home and earning a fair wage for doing so. But we must ensure that minimum wage increases are done with the recognition that many home care programs rely on state funding to pay their workers. And if that funding isn’t increased in tandem with mandatory minimum wage increases, the state could unintentionally be putting vulnerable residents at risk.
Simply put, if Medicaid reimbursement rates for home care services are not increased at all, or at a rate too low to cover new minimum wage standards, then many home care providers will need to consider whether they can afford to keep their doors open. If providers do decide that they cannot remain sustainable and do decide to forgo providing Medicaid-based home care services, then the real loser is the millions of Americans that rely on that provider to live independently at home. Down the line, this could result in more people who can live at home with help from a home health aide into being forced into nursing homes.
“People want to live at home. And it’s the most cost-effective option for states. Home health aides are the backbone of our industry and we absolutely support wage increases for our workforce, but states need to be thoughtful in their approach to protect the many seniors and individuals with disabilities that rely on home and community-based services. We are working with state legislatures to make sure that they understand the relationship between rates and wages, and the potential risk to vulnerable residents who need home care,” says BAYADA Chief Government Affairs Officer Dave Totaro.
So far this year, 18 states have started the year with higher minimum wages than the year before. If you live in a state where the minimum wage is set to increase, then you have a unique opportunity to advocate and tell your legislators about the importance of home care and of paying home health aides a living wage. Contact firstname.lastname@example.org to find out ways you can play a role in ensuring that home care is accessible to the many that want to stay at home, and that home care workers continue to be attracted to a field that helps them do just that.
NJ Senator Troy Singleton and Assembly Committee on Human Services Chairwoman Assemblywoman Joann Downey have introduced legislation S1820/A3632 to further clarify the Personal Care Assistant (PCA) increase to direct care workers.
The legislation will simplify the process for the PCA direct care worker’s rate increase and will take provider costs into account. GAO is currently meeting with members of the legislature to ask for their support for this clarification bill.
As background, New Jersey’s PCA program has had historically low reimbursement rates under the state’s fee-for-service. Over the last three years, GAO was successful in increasing the state -fee-for-service rate from $15.50 to $18.00 per hour and last year, to $19.00 per hour. Unfortunately, when the PCA program transitioned to Managed Medicaid, managed care companies did not follow the same reimbursement rates and continued to pay, in many cases, less than $15.50 per hour.
In the last legislative session, GAO was successful in passing legislation which set a reimbursement floor in managed care for PCA at $19.00 per hour. However, Governor Christie conditionally vetoed the legislation with a stipulation requiring all increases pass directly through to direct care workers.
The legislation introduced by Senator Singleton and Assemblywoman Downey will further clarify the PCA increases to account for direct and indirect provider costs. If you have any questions about this bill or any other bills in NJ, please feel free to email me at email@example.com.
As I reflect on 2017 and what we have accomplished, the first thing that comes to mind is Thank You.Thank you for your support, your engagement and your advocacy efforts — all of which made a difference in the lives of our clients, families and employees.
2017 was the “Year of Client Advocacy and Engagement.” Clients and families engaged lawmakers and the community at-large through home visits, family support group meetings, and phone calls and meetings with lawmakers in Trenton. These efforts ensured that our aides, nurses, and the importance of home care remained top of mind to New Jersey representatives and senators.
2017 was successful in many ways and set us up for even bigger wins in 2018. Below, please find a summary of 2017’s priorities and accomplishments:
• The Managed Medicaid Rate Floor bill was signed into law, effective July 1, 2018. The new law mandates a 100% pass-through of increased reimbursement to aides. In 2018 we will introduce a new bill which will be more reflective of a competitive wage environment and will mirror the original bill with no mandated pass-through.
• The Personal Care Assistant (PCA) fee-for-service rate was raised from $18.00 per hour to $19.00 per hour through a budget resolution, effective July 1, 2017.
• We successfully lobbied against Governor Christie’s intent to end the NJ/PA Reciprocity Tax agreement. This accomplishment saved our employees and BAYADA thousands of dollars in taxes.
• In July, the Private Duty Nursing (PDN) bill was introduced. This bill’s aim is to raise the PDN reimbursement rate by $10 per hour for RNs and LPNs. While the bill did not ultimately pass the state legislature in 2017, it brought awareness to the need for higher reimbursement rates within the program. We will continue to pursue this bill’s passage as a major goal for 2018.
• In conjunction with NJ’s Home Care Association, we successfully lobbied for legislation that permits physical therapy aides to practice in clients’ homes as long as the aides are supervised by a licensed physical therapist every two weeks.
• The BAYADA Champion Awards were held in December. This year we honored Lieutenant Governor-elect Sheila Oliver, Assemblywoman Nancy Munoz, Assemblyman Paul Moriarty and Senator-elect Declan O’Scanlon for their unwavering support of home care.
• BAYADA hosted a fundraiser for Senator-elect Troy Singleton, raising over $13,000 for his election fund.
• BAYADA reviewed and submitted comments to the state regarding the new 10:60 home care regulations.
Looking ahead to 2018, we will be working with Governor-elect Murphy and NJ legislators new and old to continue to advance home care and community-based services for our state’s neediest populations. GAO seeks to push for new laws to improve reimbursement rates within the PDN program, introduce legislation to provide technical changes to the current PCA managed care law, pursue minimum wage law changes, address parking challenges for our nurses and, of course, continue to advocate on behalf of our employees, clients and their families.
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.
Submitted by Laura Ness, Director, Government Affairs (GAO)
Recently, Samantha Koehler, policy aide to the U.S. Senate Special Committee on Aging for ranking member U.S. Senator Bob Casey, and Vicki Hoak, Executive Director of the Pennsylvania Homecare Association, spent the day in Philadelphia with BAYADA Home Health Care. During her time with us, Samantha spent time learning about the inner workings of our service office and went on two home visits, one to an assistive care state programs client and another to a hospice client.
During Samantha’s visit, we discussed the most recent issues to impact home care in Pennsylvania including the institutional bias that still exists, the challenges with the recent proposal to block grant or institute per-capita caps to Medicaid, and the harmful proposed home health groupings rule.
Samantha loved getting to spend some time with Ms. Lenora E. and her aide Kimyatta J. Ms. E has been a BAYADA client for over a year and gets nine hours of care a day. She is served by the Philadelphia Corporation of Aging (PCA) office. She also met Florence G., a 101-year-old heart patient who can remain at home with her daughter because of the care we deliver. She loves her Clinical Manager Faith Brown almost as much as she loves her children, grandchildren, great-grandchildren, and great-great grandchildren. Grace is served out of the Pennsylvania Media Hospice (PMH) office.
A big thank you to the PCA and PMH staff for hosting Samantha!
Executive Director of PHA Vicki Hoak, BAYADA Aide Kimyatta J., BAYADA Client Lenora E. and Policy Aide Samantha Koehler sit and discuss home care.