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?

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.