Patient Recognition Week: February 1-7

In honor of Patient Recognition Week, Hearts for Home Care sends a warm and heartfelt thank you to the many patients and families that advocate every day!

Hearts for Home Care cannot be effective in changing states’ policies and program funding mechanisms without your stories. When those who are affected by home care—clients, their families, and their caregivers—share unique and personal stories, it creates real change. These stories illustrate to legislators how impactful home care is to their constituents, and why it is important that they create new laws and amend existing ones to maximize access to care for residents who need it most.

Advocating for yourself or for a loved one is rewarding. Sharing your voice can mean the difference between a legislator being unaware of home care’s impact, to their proactive support of home care. In honor of Patient Recognition Week, below are several real life examples of clients in advocacy action. Home care patients and families make all the difference. Thank you for all you do!

Delaware mom Kateri Morton has advocated for her son Joey in many ways, from being featured on local news station WMDT (47 ABC) to share how low state Medicaid rates have affected her ability to get all of Joey’s skilled nursing hours covered—to organizing a group of active moms to testify at upcoming state hearings on the issue! Not only have legislators heard her voice loud and clear, but now other DE moms have heard her and thereby gained the confidence needed to share their stories too.

Kateri’s advocacy on behalf of her son Joey has enabled state decision makers to hear about the importance of in-home nursing through many mediums—including print and broadcast media.

Durham, North Carolina’s Mr. Mendenhall is a 90-year-old armed service Veteran with Dementia. Due to his diagnosis and the accompanying physical limitations, he needs constant supervision and support—including assistance with everyday activities, such as dressing, eating, bathing, toileting, and moving around. Mr. Mendenhall lives at home with his wife, Margarite, of more than 50 years. She does her best to take care of her husband, despite her own medical challenges and limitations. While they both are frail, they are happy to be at home and together. They are able to stay at home through the home health aide services that he receives from his home health aide, Kashina, who comes in two hours per day to care for Mr. Mendenhall. Her caregiving services enables Mr. Mendenhall to remain as mobile as possible, as well as remain in his community.

Mr. Mendenhall (left) meets NC Rep. Hawkins while his wife looks on. They want to do what they can in order to show state and federal lawmakers how important home care is.

While you’d think that their advocacy work is limited, the couple recently participated in a home visit in which NC Rep. Zack Hawkins. This enabled Rep. Hawkins to see firsthand how home health aides help keep constituents costly and potentially infectious facilities such as hospitals and nursing homes. After Rep. Hawkins’s visit, he helped the family connect with the VA to address challenges they were facing. Rep. Hawkins said, “As a lawmaker, it is important we support seniors. 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.”

LaToya Martin is a super-mom who fearlessly advocates for her son Massiah. When she wrote an opinion piece for the Delaware Post, her powerful message led to many state legislators learning about how home care affects real people across the state. That message resonated not only with lawmakers, but also with moms and home care advocates from all parts of the US. Scary Mommy—one of the largest online resources for moms—even reshared her piece to the hundreds of thousands of readers that regularly access their site!

Mark Steidl is a disability rights advocate from PA to DC and beyond!

Mark Steidl of Pittsburgh, PA doesn’t let communication challenges stop him from sharing his voice. Diagnosed with Cerebral Palsy, he uses a Dynavox to communicate the importance of home care and the impact of his home health aides with his legislators! Mark and his mother travel to the state capitol in Harrisburg, and to Washington, D.C. at least once a year to take part in Hearts for Home Care lobby days—days in which dozens of advocates gather to make meetings with legislators that will be voting on home care-specific legislation.

In a conversation with Mark about his advocacy work, he said, “If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes. But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

NJ mom Dana Insley testifies at a public hearing in Trenton.
Dana (second from right) is pictured with her family, including daughter Abi (second from left in white & pink)

New Jersey mom Dana Insley steps up to the plate for any opportunity to advocate on behalf of her beloved daughter, Abi. After 2+ years of fighting, Dana and her husband adopted Abi, who needs skilled home nursing to be able to live a safe, healthy life alongside her siblings and loved ones at home. When she isn’t taking care of her family, Dana thinks of many ways to advocate. She has testified at many state hearings for increased home care funding, regularly writes opinion pieces to share with news sources and legislators, and always makes time to share her family’s home care experience with the public. Abi didn’t only get a second chance at life, but she also got a mom whose voice advocates on behalf of all New Jersey children and families with special needs.

This is a mere glimpse into the wide world of patient advocacy. Thank you to the many, many home care clients and families that take the time to advocate in a variety of ways. From a brief video meeting with a legislator, to a home visit with your medically-fragile loved one, to writing to your local paper, sharing your story helps lawmakers see the importance of in-home care, and empowers you to act as a voice for the many who are unable to advocate for themselves. We recognize you and appreciate you. To get involved in advocacy in your community, contact advocacy@bayada.com today!

As Drawbacks of Nursing Homes are Recognized, It’s Time to Recognize Home Care as the Future

Medicaid Home Based Care
Home health aides help keep many families together at home.

Whether you are a professional or family caregiver, home care recipient, or otherwise, you know why home care is safer, more patient-preferred, and less costly than institutional care. Home care provides vulnerable seniors and adults with disabilities with one-on-one care that enables them to stay safe and independent in their own communities. While its benefits—and the inherent drawbacks of institutional care—are evident to us, home care is still not widely recognized as a long-term solution. This is because nursing home care is still often seen as the “default” option for those that need consistent care, particularly under Medicaid.

But tables are beginning to turn: As the COVID-19 pandemic has shed light on the dangers of nursing home care. With recent reports citing that a staggering 40% of COVID-related deaths have occurred in nursing homes, people are more widely recognizing home care as the long-term care setting of the future.

Home care saves state Medicaid programs money and helps vulnerable Americans stay out of costlier and more infectious settings like hospitals and rehab facilities. It enables more than 8.3 million Americans to remain healthy at home, thanks to the 3.2 million compassionate and dedicated frontline direct care workers, including home health aides and personal care assistants, that keep these at-risk populations safe, independent, and out of riskier institutional settings.

In a post-COVID world, home will become recognized much more widely as the care setting of the future. With the US’s aging population growing quickly, and with families’ recently-discovered reservations about placing their loved ones in a long-term care facility, it is important that governments across the country take steps to make sure that the home care industry grows proportionately along with the demand for it. This includes: Increasing state and federal Medicaid rates for home care services so that providers can raise wages and allow more caregivers to be recruited to the home care workforce; Rethinking outdated laws and regulations that allow vulnerable populations to more readily access nursing home care; and instituting built-in protections for Medicaid-based agencies, such as relief funding for extraneous costs that occur during an emergency like COVID-19.

A “Home First” mentality would allow for individuals to stay safe at home and away from group settings that encourage virus spread. Now more than ever, the potential dangers of institutional care are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age, and as more medically-fragile and disabled individuals are able to live independently. By updating laws to prioritize home care, we have the opportunity to create a meaningful, cost-effective and common-sense change to healthcare for the post-COVID future.

If you are ready to advocate for home health care, please contact us at advocacy@bayada.com.

Recognition and Fair Compensation for Frontline Home Care Workers—During COVID and Beyond

By: Dave Totaro, Chairman of the Partnership for Medicaid Home-based Care

Below, please find an opinion piece authored by Dave Totaro—Chairman of the Partnership for Medicaid Home-based Care (PMHC) and BAYADA Home Health Care’s Chief Government Affairs Officer. This was originally published in the Scranton Times-Tribune on May 10, 2020.

Our nation’s frontline healthcare workers have been recognized during the COVID-19 pandemic, arguably more than ever before—and rightfully so. These essential workers put their health and safety on the line in order to make sure that the most vulnerable populations are taken care of. But these workers—particularly the caregivers that keep these individuals at home and out of riskier settings like nursing homes—deserve more than cheers, front lawn signs, and complimentary cups of coffee. It is time that our federal and state governments fairly compensate these brave and compassionate workers for the sacrifices that they are making during this critical time through Hazard Pay—that is, temporary increases in hourly wages for workers who are risking the most yet earning the least.

Congress has passed three stimulus bills so far, and have done so quickly and commendably with an eye toward helping the economy and the unemployed. But these packages have not yet focused on compensation for those who are working—the essential employees that risk their safety to care for the many that can’t help themselves. And while many healthcare professionals within hospitals and institutions have been impacted, the federal government has not yet prioritized the caregivers that keep people healthy at home.

Congress is currently working on the fourth (and likely final) stimulus bill. This presents a vital opportunity to increase Hazard Pay for healthcare workers who put their safety on the line every day. While the first three stimulus packages have increased emergency funding for states, only a handful of states have used those funds to increase pay for frontline healthcare workers. Currently, there are three potential proposals that would serve to increase pay for these workers across the US—either of which would reward home care workers and incentivize many to begin or continue their career in a field that is much-needed during this time.

Home care workers—particularly home health aides—are largely females of color who are making slightly above minimum wage. Yet they are some of the most essential workers—caring for those who are unable to care for themselves. And not only is their job physically and emotionally tolling, but the prioritization of hospital care has made it increasingly harder for home care agencies to access personal protective equipment, such as masks, gloves, hand sanitizer, and gowns, for these workers. And, to top it all off, we are regarding them as heroes without considering fair compensation for their commitment and sacrifice.

Now more than ever, the potential dangers that go hand-in-hand with nursing home living are becoming a frightening reality and we as a nation need to consider the future of healthcare as our population continues to age. Nearly 20% of COVID-related deaths have occurred in nursing homes. Not only is in-home care the best way to ensure that the most at-risk populations—seniors and the medically fragile—stay as isolated as possible rather than be grouped in together, it also ensures that they are in the most cost-effective setting for their families and for the state and federal governments themselves.

COVID-19 has hit many Americans hard, and few are exempt from at least some negative consequences as a result. But it is clear that there are some who are risking more than others, and who are sacrificing their personal safety in order to keep others healthy and independent at home… both in times of crisis and times of normalcy. So while the recognition and support of frontline workers is certainly appreciated, it does little to truly show home care workers how valuable they are. Through the development of the fourth stimulus package, the federal government has the opportunity to meaningfully show at-home caregivers what they mean to America—both now and in the future. Home health care has been making headlines in recent media coverage.

In order to join those who are advocating for better home health care funding and policies on behalf of beneficiaries, their families, and frontline workers, contact us at advocacy@bayada.com

NJ PCA Beneficiary Keith Braswell: New Jersey Paraplegic’s Life Put on Hold When Home Health Aide is not Available

Many New Jersey seniors and adults with disabilities are able to stay safe and independent at home due to assistance from Home Health Aides (HHAs) under the state’s Personal Care Assistant (PCA) program

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 advocacy@bayada.com.

Michelle Lino-Corona: New Jersey Paraplegic’s Life Put on Hold When In-Home Nursing is not Available

NJ Blog Takeover: Michelle, who is the sister of TBI Victim Brandy Lino-Corona, writes about her sister’s life after becoming severely disabled – and how working with nurses through NJ’s Private Duty Nursing (PDN) program has helped her family define their new normal.

Brandy’s family and caregivers surround her bed in her Absecon, NJ home

For the victims of traumatic brain injuries, access to reliable home health care can be the deciding factor that keeps people either permanently institutionalized, or at home with their loving families. My 17-year-old sister, Brandy, suffered a Traumatic Brain Injury (TBI) from a severe car accident in September of 2018. Since then, the state of New Jersey has authorized 16 hours of specialized nursing care per day for Brandy. This care allows her to stay safe at home, and allows my father, mother, and I to lead proactive, fulfilling lives outside the home. However, Brandy rarely receives all of her authorized hours due to New Jersey’s inequitable Medicaid reimbursement rates for their state-funded Private Duty Nursing (PDN) program.

The severity of Brandy’s injuries left her incapable of moving, eating and even breathing on her own. Nurses that work with her need to be up-to-date on life-saving techniques such as tracheostomy care, respiratory treatments, suctioning, monitoring vital signs, feeding tube care and feedings and administering meditations. Additionally, Brandy must be readjusted every two hours in order to combat her risk of skin breakdown and bedsores. This regularly poses as an obstacle when nurses miss their scheduled shifts as this task requires two people due to her size.

Like so many medically-complicated residents of New Jersey, my sister is at risk of institutionalization and/or hospitalization without the proper nursing care she requires. With potential caregivers persuaded by competitive wages and less physically and mentally taxing employment, eligible patients’ access to qualified healthcare professionals diminishes. New Jersey’s legislators need to consider the plight of their most vulnerable constituents and make the decision to increase Medicaid reimbursement rates. An increase in New Jersey’s Medicaid reimbursement rates would provide a second lease on life for Brandy and those like her, as well as instill a sense of hope for their families whose only desire is to be able to continue to care for their loved one in their own home.

-Michelle Lino, Absecon

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 advocacy@bayada.com

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.”

Client Spotlight: BAYADA NJ Client Jim Davies Turns Home Visit into an Opportunity to Fight for Nursing Coverage

BAYADA client Jim Davies (center, seated) hosted a home visit with Assemblyman Benson (upper left)

When BAYADA Home Health Care client Jim Davies received a notice in the mail last year that his insurance would be transitioning to another agency, he tried not to panic. After all, the letter stated there would be no change, he would still receive coverage for his home health care nursing and personal care home health aide services.

However, Jim was not convinced. The 66-year-old, who suffered a spinal cord injury as a result of a diving accident 20 years ago, is nearly paralyzed from the neck down. He relies on his nurses for his complex medical needs, which include wound care, range of motion exercises, mechanical transfers to and from bed, medication administration, catheter care, and care to prevent a serious complication called autonomic dysreflexia, which can lead to seizures, stroke, or even death.   

As a former sheriff and local fire commissioner, Jim is used to working collaboratively with others to make things happen. That’s why he immediately called a case manager at the insurance company, who reiterated what was explained in the letter, his home health care coverage would not change.

Coverage denied

Fast forward to the end of the year when Jim received another letter, this time from the new insurance company. Despite written and verbal assurance that his coverage would not change, the new company denied his home health care services, insisting Jim was stable enough and no longer needed nursing care.

Jim reached out to his BAYADA Mercer County Adults (MCA) office Director Meghan Hansen and Clinical Manager Sharon Wheelock who appealed the decision on his behalf, to no avail. That’s when they turned to BAYADA Government Affairs Area Director Louise Lindenmeier, who suggested Jim reach out to New Jersey Assemblyman Daniel Benson, a member of the state Health and Senior Services Committee.

Legislative home visit leads to positive change

“When I called Assemblyman Benson’s office, I wasn’t sure what the response was going to be, but I was pleasantly surprised,” says Jim. “The assemblyman made me feel that as his constituent, my problem was a major concern, and he owned it.”

Assemblyman Benson visited Jim and his wife of 40 years Rosemary at their home to witness, first-hand, the critical role home care nurses play in Jim’s health and well-being. During the visit, Assemblyman Benson also learned about the catastrophic medical consequences of stopping Jim’s nursing care and BAYADA’s unsuccessful efforts to appeal the denial from the insurance company.

Following the visit with Jim, Assemblyman Benson jumped into action. He joined BAYADA Managed Care (MCO) Director Pamela Soni, BAYADA Area Director for Pediatrics Managed Care (MCP) Stephanie Perna, and Louise for a meeting with the NJ Department of Banking and Insurance to discuss Jim’s case. In addition, he personally contacted the insurance company to negotiate the contract, resulting in a reversal of the denial. Thanks to his efforts, the issue was resolved within two weeks.

“It is really important to educate politicians on how insurance changes can impact their constituents,” says Jim, who encourages others in similar situations to reach out to legislators who may be more than willing to help. “Assemblyman Benson should be recognized for his prompt and professional response to my needs.”

Assemblyman Benson considered it a privilege to play a role in helping Jim. “It was my honor to work with Mr. Davies to ensure that he received the care he needs and deserves,” he says. “As legislators, it is our sworn duty to represent our constituents, and that means lending our assistance whenever possible, whether by simply cutting through red tape or elevating a situation to a higher level so that it is promptly addressed. I would encourage those in need to reach out to their elected representatives to learn what they can do for them.”

Want to Help Make a Difference: Register for Hearts for Home Care

Whether you can give a minute, an hour, or a day, there are many ways to get involved in advocacy. It can be as simple as sending a pre-written email to your local legislators, hosting a legislator in your home, or attending an event at a legislator’s office or your state capitol.To learn more, consider becoming a “Heart for Home Care” advocate. It only takes five minutes to register at heartsforhomecare.com. You’ll receive email updates about current issues and opportunities to make your voice heart.

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!

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.