Home Care and Independence

Lee-Ann Quinn with son Zach. (PBN PHOTO/MICHAEL SALERNO)

My name is Zach Quinn and in many ways, I’m similar to other 22-year-olds that are around me: I love board games, video games, and movies. I love my family—even though my three little sisters get on my nerves sometimes. 

But I’m very different from just about every other 22-year-old I know in one big way:  I have Duchenne Muscular Dystrophy (DMD), and I rely on home health care services for nearly all of my daily activities. These nursing and certified nursing assistant (CNA) services allow me to be as independent as possible—and allow me to live, in many ways, like my non-medically complex peers. 

DMD is a degenerative neuro-muscular disease that causes the muscles in the body to weaken. DMD led to the loss of my ability to walk, and my needing a wheelchair. It has also led to the loss of lung function, which required me getting a trach and vent to breathe for me. I need to be medically monitored to stay independent, which is why I rely on home care in my daily life.

I wanted to write this blog post as a way to show the wider world that being disabled doesn’t make me—and others like me—so different, as long as we have the proper care in place. Home care allows me to maintain my independence. It takes a lot for me to do that, but it is worth it. I need nurses and CNAs to get ready every day. They help me get washed and dressed so I can get up in my wheelchair and start my day without my parents’ help. This makes it so I can hang out with my family, go out in my community, and be myself. I appreciate the life I have because of the care I receive from my nurses and CNAs, and it has changed my life.

Zach with his siblings and home care nurse, Jeff.

I truly believe that home care is the future of healthcare, and that so many more people could benefit from it if it was more readily accessible. Home care keeps disabled adults and seniors out of nursing homes and other facilities, and it keeps medically-complex children and adults like me independent in our communities. From a wider scope, this allows many people to grow up at home, go to school, contribute to the economy, and contribute to the community. Also, by keeping people out of costly places like ERs, hospitals, and long-term rehab and nursing facilities, it saves state budgets’ and families’ money. 

I truly believe that home care is the future of healthcare, and that so many more people could benefit from it if it was more readily accessible.

Another purpose of this blog post is to show what happens when things fall through. There is a huge gap in people’s ability to access home care, even if they and their families prefer to be at home. I’m no exception. I have had great nurses and CNAs leave the home care industry, which has led to my parents having to call out of work. They usually leave for better paying jobs—which is great for them, and often necessary so that they can support their own families. But it really affects me—it makes my care unpredictable for me and my parents, and makes it more difficult for them to count on care and know that they can sleep and work normally.

It also makes it a “revolving door” of caregivers in many ways. This has its own layer of problems, but in the end, the best way to prevent this is to ensure that caregivers like nurses and CNAs can make a sustainable wage and living in home care.  I studied Digital Media in high school, and I wanted to pursue a career in video game design. There are so many individuals in RI and across the US and the world who are able to live good lives, get jobs, and provide to the economy and community as long as good home care coverage is available. I don’t belong in a nursing home—I belong in my own home, and in a place where I can design video games!

Zach and family with Rep. Julie Casimiro during a home visit a few years ago.

But I can’t accomplish any of this without home care. We need to make sure that enough people want to work in home care—that it is a rewarding and compassionate career path. In my home state of Rhode Island, and in nearly every other state in the US, professional caregivers like nurses, CNAs, and home health aides are paid less than their counterparts in other settings—like hospitals. This keeps institutional care as more readily accessible to people who need long-term support. The federal government and state legislators must make sure that home care is a viable career by funding home care programs better. This would allow nurses, aides, and other caregivers to be paid a fairer wage—and would allow more of the workforce to enter home care. 

There will be a long time before we can say that home care is as accessible as care in other places. But this is one way to start.

After all, isn’t celebrating individual independence a huge and important part of our collective American culture?

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.”

Aides Cried Tears of Joy for Much-deserved Raises throughout North Carolina’s Assistive Care State Programs Offices

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO) and Shannon McCarson, Regional Director, Dogwood Group (DOG)

We worked together and made it possible. After many years of advocating for higher reimbursement rates within the state Medicaid programs, we finally received an increase in the hourly rate for personal care services (PCS). This achievement was made possible through the persistent advocacy efforts of our employees, clients, families, and government affairs team. Our Hearts for Home Care Advocates participated in email campaigns, home visits, legislative roundtables, home care lobby days in Raleigh, and professional lobbying efforts.

As a result of working together, this week assistive care state programs directors throughout the state were thrilled to pass along an increase to our deserving CNAs and HHAs who care for our Medicaid clients and have stuck with us through thick and thin.

Directors have been personally speaking to staff to share the great news. “One by one, as I spoke to our aides, I heard the same thing – gratitude, appreciation, tears of joy, and, yes relief, too,” said Mimosa (MIM) Division Director Joe Seidel. “The low Medicaid reimbursement rate made it impossible to pay more. I am glad to do it now.” This rate increase is a good place to start, and more needs to be done.

Let’s keep the momentum going by joining to be a Hearts for Home Care Advocate. We believe our aides deserve even more for the important work they do in keeping our clients safe at home. If you are not already part of our advocacy group, join today at heartsforhomecare.com to receive alerts that could influence future efforts to increase pay rates.

 

Expanding Our Reach Through A NC Home Visit

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

When freshman NC Representative Andy Dulin expressed an interest in home health care, Charlotte Personal Care (CPC) Hearts for Home Care Ambassador and Client Service Manager Shayla Jemmott, and Clinical Manager Deborah Batts jumped into action. They hosted a home visit with CJ, a 24-year old young man with cerebral palsy, and his family. CJ’s mom explained how the three hours per day of certified nursing assistant services allows her to work and gives them a sense of peace knowing CJ is happy and healthy. Rep. Dulin asked great questions and was surprised to learn that the aide rate, at $13.88, is only $0.44 cents higher than back in 2001. He indicated he is willing to help us garner support for the increase.

""
Representative Dulin with CJ