Dena Kopczynski: Legislature must fund supported living services

When my sister became critically ill last spring, one of my first thoughts was “Who’s going to take care of my nephew?” I was in the delivery room when my sister gave birth to him almost four decades ago, but it wasn’t until I was thrown into the panic of trying to find him a home last year that I fully understood the extent of what it can mean to care for an adult with an intellectual or developmental disability.

Today, my nephew is fortunate to be a recipient of supported living services in Washington state. But my journey through the minutiae of long-term caregiving has compelled me to speak out and ensure that this critical model of care is accessible for the families and individuals who need it. Lawmakers are currently in Olympia debating priorities to support in our state budget. I hope that they can at least help caregivers like those that my nephew relies on keep up with the cost of living. Supported living is more than 99% reliant on Medicaid, set by the state Legislature, for funding care. If our Legislature doesn’t act, we risk falling even further behind in adopting a sustainable, consistent model of care for those with intellectual and developmental disabilities living in their own homes in a community of their choosing.

In Washington there are approximately 4,600 people receiving supported living services, many for 24 hours a day, seven days a week, and there is an unmet need of tens of thousands more individuals who qualify. For many families, including mine, it is simply not possible to provide the extent of care our loved ones require by relying on family members alone. Supported living services center the dignity and humanity of clients while providing a long-term care plan for families.

Until last year, my nephew had lived with his mother for his entire life. But the reality is that my sister will not be here someday, and aging parents cannot care for their aging children in perpetuity. That is why I am grateful to live in a state that prioritizes caring for one another. I firmly believe that caring for the ones who need us most ensures that we will be the best for everyone.

As I researched care for my nephew, I began to understand just how fortunate he had been. When we had to transfer him on short notice to a residential community in his home state, before he moved to Washington, the staff turnover at this home was high. I saw firsthand how his quality of life declined every time a new caregiver had to come in and start over.

In our state, our turnover rate of direct support professionals providing supported living services is in the highest 25% compared to other states. Systemically, the low wages created by funding shortfalls result in less available spots for people like my nephew. What keeps me up at night are the hundreds of families like mine who are sitting on the wait list while they wait for the stars to align. I have heard of families being advised to take their loved one to the hospital until they can get a spot in a program like the excellent one we’re lucky to be a part of. It is heartbreaking and maddening.

Our elected officials know the answers to this crisis. Although they face a dramatic budget shortfall, supported living is the most cost-effective model of care we have. It is 142 to 176% less expensive than other state-run and hospital-based alternatives. The studies that the state Legislature has commissioned make it clear that we must offer a self-sufficient wage to direct support professionals. This work is not easy, but it is essential. Every person I’ve met who cares for my nephew is kind, supportive, and generous. They deserve to have a stable income, just as my nephew deserves stable care.

My nephew is an avid bowler. He has his own special bowling ball made just for him, without holes. His smile can brighten every corner of a room, and I feel so lucky to have known him his entire life. Just like me, he deserves the ability to live a life with agency, dignity, and community. I urge our state legislators to remember him and his caregivers as they weigh priorities in the state budget this legislative session. Together, we are capable of more.

Dena Kopczynski lives in Spokane and is leading the coordination of care for her developmentally disabled nephew alongside multiple members of her family.