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?

Pancakes And Politics in North Carolina

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

Special thanks to Shelby (SHE) Associate Director Amber Mitchell and Clinical Manager Vickie Deyton for representing BAYADA at the annual legislative breakfast in Shelby.  Community leaders received an update from the General Assembly; Speaker Tim Moore and Representative Kelly Hastings.  Amber is a familiar face at these legislative events and over the years has built a great relationship with Cleveland County lawmakers. In fact, when they approached for a photo, Rep. Hastings called out, “I’ve got to get on your schedule to do a home visit.”  Attending these community events not only builds awareness of the importance of home health care, but also increases our BAYADA visibility in the community.

Photo NC1 (left to right): Speaker Tim Moore, Vickie Deyton, Amber Mitchell, and Rep. Kelly Hasting

DE Governor’s Commission Committee Sets Agenda to Build Access to Quality Home Health Care

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

The Governor’s Commission on Building Access to Community-based Services, Health Committee, determined its new agenda last week.  With support of representatives from Family Voices and Family SHADE, the committee will work on ensuring that all Delawareans eligible for community-based services know what they qualify for and how to access care.  At the suggestion of a representative from Nemours A.I. DuPont Hospital for Children and me, the committee will also be working to ensure that all Delawareans, especially children, have access to quality home health care.

Morris Plains Pediatrics Office Sponsors First Community Advocacy Meeting

Submitted by Tara Montague, Manager, Client and Family Advocacy

Photo (NJ2): Christine Rios with the family and community members at the meeting.

Morris Plains Pediatrics (PED) Director Christine Rios was enthusiastic about working with the Government Affairs Office (GAO) to create the first client and community advocacy group in the state.  Despite the torrential downpours, four family and community members ventured out to the inaugural meeting on April 6, at PED.  The small group shared resources and offered each other support.  I discussed the need for legislative advocacy for home health care and how client and family voices can create a lasting impact with legislators.  A second meeting has already been scheduled for June 7.

Community Home Care Support Group Meeting A Success In Hazleton, PA

Submitted by Rick Hynick, Director, Client and Family Advocacy

On February 23, BAYADA sponsored a community client and family home care support group meeting at a hotel in West Hazleton, PA.  Parents, grandparents, home care staff and health care advocacy groups from different sectors of the community were all in attendance.  State Representative Tarah Toohil was the special guest speaker and was involved in an interactive discussion with everyone in attendance.   Families caring for loved ones with special medical needs had the opportunity to network and talk with other advocates and family members and learn of new ideas.  One of the main topics of discussion revolved around the need for more nurses in home health care.  The group is going to stay in contact through an email platform and share ideas, new events and information and reconvene in the spring at the next meeting.

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Attendees of the support group meeting

Client Advocacy Gains Ground in NJ and PA

Submitted by Tara Montague, Manager, Client and Family Advocacy, NJ and Rick Hynick, Director, Client and Family Advocacy

Client and Family Advocacy Manager Tara Montague has been busy visiting service offices with Government Affairs Office (GAO) Director Louise Lindenmeier to talk about client and family advocacy and the Hearts for Home Care program. So far, we’ve managed to visit with nine offices with more being scheduled every day.

Additionally, on January 27, GAO Director Rick Hynick had the pleasure of meeting with Kim Minor, Pennsylvania’s Northeast Regional Coordinator for the Special Kids Network (SKN). SKN helps to identify services for children and families who care for individuals with physical, developmental, behavioral, and emotional needs. Supporting families in overcoming their challenges by utilizing community support services is a large part of what SKN accomplishes on a daily basis. SKN will be working with BAYADA by promoting home care advocacy as they will be attending and taking part in our community home care support group meetings.

Overall, our offices are excited about having our clients be more involved in our advocacy efforts and supporting our legislative visits.