Why Home Care Matters – Meet Lacy!

Lacy and her primary caregiver–her grandmother–rely on in-home nurses to keep Lacy safe and comfortable at home
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 advocacy@bayada.com today!

North Carolina State Representative Zack Hawkins Experiences a Day in the Life of a Durham Veteran Receiving Support at Home

NC state representative Zack Hawkins (left) meets home care client Mr. Mendenhall (seated) and his wife

State Representative Zack Hawkins, an active supporter of home health care, recently visited with a Durham family who rely on services to stay safe at home.

Representative Hawkins visited with a constituent, Mr. Aubrey Mendenhall, an armed service Veteran with a wonderful sense of humor. As a young US Sargent in Germany, he saw the prettiest lady working at the base general PX store…and spent the next thirty days asking her out. Margarete finally agreed and they’ve been together for more than 65 years.

Some five years ago, Mr. Mendenhall was diagnosed with Dementia – a condition characterized by a decline in memory, language, problem-solving and other thinking skills that affect a person’s ability to perform everyday activities. His dementia makes it difficult for him to manage without constant supervision and puts him at a high risk of falling. A certified nursing assistant (CNA) comes to help him bathe, toilet, and dress. “The aide’s goal is to help Mr. Mendenhall stay as independent as possible. Make sure he doesn’t fall or get an infection that can put him in the hospital,” said BAYADA Home Health Care Clinical Manager Megan Russell, RN.  

The Department of Veterans Affairs covers 11 hours of aide services per week. Outside those 11 hours, Margarete is his constant companion and support. She uses the 1 ½ – 2 hour breaks she receives each day to perform other necessary tasks such as running to the grocery store, to a doctor’s appointment, or to simply have an uninterrupted cup of tea. It is her only break from caregiving. At 90 years old, dealing with her own health issues, and after five years of serving as Mr. Mendenhall’s primary caregiver, Margarete finds herself exhausted!

With tears in her eyes, their only daughter, Kathy, commented that she is considering quitting her job as a nurse and move in with her parents so that she can better manage their care. While carrying for a loved one with a chronic illness can be profoundly meaningful, it can also be overwhelming as the physical, emotional, financial tolls compound on the family caregivers.  

“Having personally been touched with seeing my mother and aunt provide care to my grandmother, I understand how important it is to be able to take care of one’s family,” said Representative Hawkins. “And as a lawmaker, we need to support seniors and their families. To ensure they can live a full life at home. Care at home is an important option, less expensive, and where people want to be.” 

According to AARP’s online article, Caregiver Burnout, “over time, that physical and psychological wear and tear can lead to caregiver burnout – a condition of feeling exhausted, listless and unable to cope.”  Russell has reached out to the VA case manager to explore respite care which would allow for the family some much needed breaks. The Mendenhalls want to stay together, however, they need some additional support to effectively care for themselves while maintaining their responsibility to their loved one.

“In-home care programs provide one-on-one care by licensed nurses or certified nursing assistants under the care of a physician,” said BAYADA Area Director Lee Dobson.  “They allow families to stay together and be safe at home. It really gives the state more for less and is clearly part of the health care budget solution.”

GAO SC: Much-Needed PDN Rate Increase Helps Keep SC Medicaid Skilled Nursing Offices Open!

GAO Director Melissa Allman and SC office employees, field employees, and clients & families made all the difference in ensuring that medically-fragile residents could continue to access home care

Over the past several years, home care offices across South Carolina have struggled to stay sustainable due to low state Medicaid reimbursement rates for in-home nursing services. As more and more providers shut their doors, GAO and our advocates continued to fight towards a solution so that South Carolina’s most vulnerable residents could continue to access the skilled care they needed to stay at home.

After aggressive advocacy and a public affairs push throughout 2019, our concerted efforts are beginning to pay off! After more than a decade without a nursing increase, the state recommended a 15% increase, effective July 1, 2020. After further advocacy efforts focused on the urgent need for an immediate increase, including articles profiling affected families in the media, the SC Department of Health & Human Services (DHHS) issued the initial 5% increase be effective January 1, 2020. This 5% increase will generate nearly $230,000 in additional annual revenue.

BREAKING: DHHS is committed to including the remaining 10% to be effective July 1, 2020. If the provision is passed into law as planned, then PDN services will see a total 15% increase from 2019 levels (5% increase effective January 1, 2020, and an additional 10% targeted for July 1, 2020), resulting in nearly $690,000 in additional annual revenue.

Further increases are needed to ensure access to care for all vulnerable South Carolinians. These major steps forward would not have been possible without sharing our collective voices to showcase the importance of care in the home care and the need to regularly maintained viable reimbursement rates.

Thank you to all of our South Carolina offices, leadership, clients, and families that shared their stories and advocated for this important increase!

GAO MD: 30% Increase to All Home- and Community-Based Services through 2025!

Client and family advocacy helped to bring MD’s dire need for a rate increase to the Baltimore Sun’s front page

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.

Medically Complex and Turning 21: Rhode Island Families Struggle to Access Home Care

Brandon Stone (center, seated) has been able to grow up at home among his parents and siblings due to home care nursing. Turning 21 has threatened his ability to continue with that care.

For most people, turning 21 is a milestone to celebrate. But the State of Rhode Island is putting undue pressure on medically complex Rhode Islanders who are turning 21. For those who receive home care services under Medicaid, such as the Katie Beckett waiver, their medical coverage changes on their 21st birthday, which affects who pays for their services, the types of services available to them, and their state-authorized hours and funding levels. Without proper planning and communication, these changes can result in uncertainly of continuity of care and access to home care services.

For young adults like Zach, Corinna, Brandon, and their families, turning 21 has been a source of significant stress and uncertainty rather than the celebration it deserves to be. Upon “aging out” of Medicaid, they have received word from the state that their care would be changing without much warning. Parents of medically complex individuals tend to be lifelong advocates on behalf of their children, and so all three have been able to retain their services on a month-to-month basis. “This is just a band-aid that covers the issue,” says BAYADA Home Health Care’s Government Affairs Director Ashley Sadlier. “Each month, they don’t know whether that band-aid will stay on or get ripped off. Everyone deserves to stay at home if it’s their wish to do so, and it’s arbitrary that a birthday is basically a penalization in Rhode Island.”

The interesting fact is that the State has already created a policy stating that home care children and their families are to be educated on their options by the age of 17. But Rhode Island has not upheld its end of the bargain: Families find that they receive little to no communication from the State, and that when they reach out to find out their children’s care options, the State is slow to respond and typically unable to provide proactive guidance to help families navigate this change . “Modern medicine and advances in home care have allowed for many children to live past the age of 21. That should be a reason to celebrate, not a reason to cut an individual’s services off suddenly,” says Corinna’s mother Michelle. “Home care saves the state money, and it keeps families together. Why would you put a child in danger when it’s clear that home care has enabled them to live their best life?”

Families, home care providers, and and other organizations across the state are currently working with the State to identify a solution. Without home care, clients stand a greater risk of infection, hospitalization, or even a permanent move to a skilled nursing facility. Parents know that a child doesn’t stop being your child when they reach adulthood, but it’s time that Rhode Island recognize this as well.

South Carolina Families Suffer as Reimbursement Rates Stay Stagnant for Over a Decade

Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians
Home care clients like Rashad (right) can stay at home with skilled nursing care, but a lack of state funding is making it more difficult for many South Carolinians

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 home.

To find out how you can get involved in advocacy, contact us at advocacy@bayada.com today.

Home Health Care in the News

The New York Times recently published an article that highlights caregivers’ and home health care clients’ challenges

The looming home health care crisis has recently been making headlines. From Home Health Care News to the New York Times, industry leaders, home health aides, clients, and family caregivers have been sharing the same message: As Medicaid rates continue to stagnate, home health aides and nurses can’t make a fair wage. As a result, the industry is facing a worker shortage and clients’ access to care is being significantly threatened across the country. Below, please find links to recent media coverage on the issue, all of which present compelling data that point to an impending home health care crisis for the most vulnerable and medically fragile populations.

Home Health Care News, September 5: “Home Health Care Training Programs Popping Up As Caregiver Crisis Worsens”

New York Times, September 2: “On the Job, 24 Hours a Day, 27 Days a Month”

Thrive Global, August 30: “The Future of Healthcare: “First and foremost, reprioritize long-term care into the home setting” with David Totaro of BAYADA Home Health Care”

Vox, August 21:https://www.vox.com/the-highlight/2019/8/21/20694768/home-health-aides-elder-careHome health aides care for the elderly. Who will care for them?”

Everyday Health, July 27: “Demand on the Rise for Home Healthcare”

Home Health Care News, June 20: “Bayada Hits 1M Clients Served. Here’s Why Hitting 2M Will be More Difficult”

Delaware Hearts for Home Care Advocate Shares Heartfelt and Impactful Story with Legislators!

Recently, a Delaware pediatric licensed practical nurse (LPN), Charlene Chappell, signed up for Hearts for Home Care and wanted to get involved. And did she come out in full force!

After sharing powerful and heartfelt testimony in Dover, DE’s Legislative Hall about the impact she makes on families and the challenges low Medicaid rates bring to nurses who want to provide one-on-one care to families at home, Charlene listened to a radio show where host Joel Olsteen spoke about “an itch you just can’t scratch.”

That got Charlene thinking about more advocacy. Charlene said, “I feel that the majority of men and women that serve as elected officials have no clue what’s required of a family when they have a child that has special needs and is differently abled! They don’t understand that nurses need to be attracted to home care so that families can rely on this care to keep their medically-complex children at home.”

That inspired her to write the below story and send it to all Delaware legislators. Read Charlene’s powerful story below!

My Itch!

I have an itch! Mo matter how hard I try to let someone know, I can’t.  I’m 8 years old and I can’t tell Mommy where I itch! I can’t reach my itch! Its 2:30 in the morning and Mommy has fallen asleep in the chair next to my bed because she had to work today and then take my sister to her dance lesson. When she finally arrived home she threw some dirty laundry in the washer, and cooked dinner. After dinner she put the wash in the dryer, and then she loaded the dishwasher. She came in my room to check on me and feed me. Off she went to make sure my sister had done her homework and was in the shower. Oh no, an alarm is going off! Here comes Mommy. I wish I could tell her how much I love her for all she does and about my itch. She looks so tired. It’s almost 8:00 pm. The phone is ringing. Hurry Mommy before they hang up!

I can hear Mommy on the phone. “What! Oh no, please tell me it’s not true. I’m so tired tonight. I don’t know if I can stay up all night with him but I must. I have to make sure he’s ok on his ventilator and his medications are given at the right time, so he doesn’t have a seizure, and that the tube feeding is running properly. He has to be repositioned every two hours so his skin doesn’t break down. I have to check his diaper too. Well… thanks for the phone call.”

Oh no. Mommy just found out my favorite night nurse called out tonight, and the rest of forever. The agency is going to try and find a replacement as soon as possible, but that may take some time. Nurses aren’t as anxious to get into home health care nursing because they can make more money at a hospital. Mommy is going to miss work because she will have to stay up with me as Daddy’s gone from home with his job right now. Mommy may lose her job. I’m so sad my nurse left. She really knew me and she knew when I had an itch. She would gently scratch me all over till she found it, like Mommy does. She understands my cues and my facial expressions as I can’t talk, or walk, or move because of my illness. 

I heard Mommy talking to the lady at the agency about the nursing shortage in home health care. She told Mommy that the money provided for reimbursement by Medicaid, not Medicare, has not increased in 13 years! The last time there was an increase in Medicaid was in 2006! I wasn’t even born then! She also told Mommy that the companies are running out of their own funds to supply the raises the nurses deserve. God bless the nurses that do work in home health care, for a lesser wage then they deserve, and take care of not only me but my mommy and Daddy too. Without them my Mommy and Daddy would not get the proper rest, would have to quit work to care for me. It would not be a good thing for my family. We would all suffer. I don’t want to go anywhere but here in my room. What if we can’t find a new night nurse? Where will I go? I overheard the doctors and nurses at the hospital talking last time I was admitted for a bad seizure and they said that all children do better in the home setting for getting well once they can leave the hospital. They are less likely to get sick again from a disease they acquired while in the hospital, and all of us are more comfortable in our own bed!

I hope my story has helped you to understand why we need to increase the Medicaid budget. Not Medicare, but Medicaid. Mommy told me that some people get confused so that’s why I will say it one more time. Please increase the Medicaid funding for home health care nurses.

Thank you for reading this. Mommy thanks you as well as all the other children and their parents that require specialized home health care nursing.  And yes, Mommy found my itch!

Thank you, Charlene, for sharing your creative and passionate story with Delaware’s legislators. We must all share our voice to make an impact, and your advocacy highlights your deep commitment to your clients’ care.

Hearts for Home Care is seeking to advocate for higher reimbursement rates for skilled nursing services in Delaware so that nurses can be better attracted to home care, and so families that need this care to stay together at home can more easily and reliably access it. For information on how you can get involved, contact us today

Thank You for Keeping Me Home: A Message from an Advocate

North Carolina advocate Ari A. during a trip to Washington, D.C.

We often think of advocacy as sharing our stories, our challenges, and asking for legislative support in addressing those challenges. But advocacy is much more multi-faceted: It’s about building relationships by cultivating legislative connections so that they become home care supporters for life, and it’s certainly about saying Thank You when the support pays off by resulting in a law or policy that is beneficial to the individual and to the home care community at-large.

Below, find a Thank You note written by North Carolina home care recipient and Hearts for Home Care advocate Ari A. Ari has been able to thrive and stay independent at home because of the skilled nursing services he receives under North Carolina’s Medicaid program. Recently, he wrote to Medicaid staff to thank them for resolving a critical issue that enabled him to continue these services. Medicaid staff are committed to improving health and well-being of North Carolinians, and their transactions are often behind the scenes and receive little recognition. Hearts for Home Care applauds Medicaid staff across the country for their commitment to helping individuals stay at home, and we applaud Ari for his sincere thankfulness of their work.

To All I Work with in NC DHHS and Medicaid,

Some of you I’ve known for years and some a short time. Through it all, the one and most important factor that has been consistent has been the capacity to care. Time and time again over the years I have had to get battle ready in order to keep my life-saving services. However, instead having to scale cold-hard hearts, impenetrable like a fortress, you invited me into your hearts. You consistently agreed to provide for my intensive care in my home instead of a medical facility; which essentially would have been leaving me out in the cold to die. Instead of fighting me you have been my allies, always being there for me when I needed you the most.

These truths became ever more apparent a couple weeks ago. For the past two years, my mom and I have been getting things ready to transfer my medications, physical therapy, and supplies to Medicare without de-stabilizing my PDN services under Medicaid. It has been a mind numbing, complicated process. We have been hyper-vigilant not to miss any details that could easily be overlooked. We recently turned in sensitive paperwork to the Department of Social Services (DSS) well before the deadline. On November 30 we spoke with the Director of Policy and Procedures for Medicaid Sandy Terrell about how to safeguard my PDN even more during the transition. Ms. Terrell told Saunja Wilson from PDN to double check if everything was in order by the end of the month. Thank God, Ms. Wilson decided to check right away. The sensitive paperwork we emailed to DSS was present, but hadn’t been pulled up yet even though my caseworker had the paperwork in her email. One of the Supervisors at DSS had also confirmed that we had it turned in. We were told email or fax was equally acceptable for documentation.

The breakdown was that this particular caseworker did not use her email for business and preferred to have documents faxed to her. My caseworker tried to alleviate a little bit of pressure off my mom and I by telling us to ignore the ‘Termination of Medicaid Services’ notice in the mail. Yet, the absolute terror that rose up from the pits of our stomachs when we received the notice was totally indescribable! Despite the paperwork being directly faxed to my caseworker, we still waited for the approval. Thankfully over a week later, the situation was taken over by one of the Supervisors at DSS. She rose to the occasion and kindly brought the matter to a close so that my mom and I could peacefully go on with our lives.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

Frighteningly, the bottom line is that I am not exaggerating when I say my life would have been ‘Terminated’ if Saunja Wilson from PDN hadn’t been ‘quick on the draw’ to find the error. If Ms. Wilson had waited to check just two or three days later, I wouldn’t have been able to disregard the Termination notice and my life would have been ruined! I say again, Thank God for my champions in NC government. You always rises up out of the mist to do a heroic save! This is what the rest of America could be and should be as far as healthcare policy.

All of you keep doing a spectacular job and always keep your focus on the people you serve instead of the numbers, especially as NC transitions to Managed Care. If you ever need my help just let me know anytime!

Sincerely,

Ari A. Charlotte, NC

New York State Budget Finalized with $550 Million Increase Restored for Medicaid Funding

Earlier this year, New York Governor Andrew Cuomo announced his plan for the 2020 state budget, including a 3.6% planned budgeted increase to overall health care spending. When proposed tax revenue estimates came in much lower than anticipated, the administration decided to cut approximately $550 million of this increase. But after strong advocacy efforts from many health care groups across the state, the Governor and his administration changed their position, keeping the $550 million Medicaid increase in the budget.

BAYADA’s Government Affairs Office (GAO) participated in several conference calls with the New York State Home Care Association (HCA) to learn more about Medicaid spending, which accounts for 42% of the budget, and what we and our office staff, clients, and families can do to advocate for higher wages for home care nurses through increased reimbursement rates. 

Currently, New York’s Medicaid reimbursement rates are well-below surrounding states, so many caregivers are discouraged from entering—or staying in—the home care industry due to abysmal wages. It also impacts BAYADA because the rates are currently so low that we are currently not be able to provide sustainable Medicaid-based home care in the state and pay caregivers an appropriate wage.

As part of a larger national trend, New York did vote to increase the statewide minimum wage to $15 per hour incrementally through 2021. New York understands that home care providers that do provide Medicaid-based services would not be able to comply with this minimum wage mandate and stay sustainable under current rates. The final budget did include an additional $1.1 billion to support the cost of raising minimum wage for health care workers. BAYADA is currently advocating for similar increases in other GAO states that have increased the mandatory minimum wage, but have not increased reimbursement rates in tandem. Medicaid rates must keep pace with the rising cost of living and increased wage mandates to ensure that providers can stay in business, and to ensure that vulnerable New Yorkers can have access to quality home care.