I joke that I live with 10 different roommates.
I am a physically disabled woman. Growing up, I dreamed that I would be able to live independently, and this dream is finally a reality. I live in my own home with a 24-7 rotation of caregivers, who assist me with my basic needs throughout the day and make it possible to access my community. My life is intertwined with a network of people, which fosters laughter, chaos, and relationships. It is a life that I wouldn’t trade for anything else.
My life as it exists right now shouldn’t be a dream. It should be a basic right for all disabled people in the state of Minnesota who want to live independently with the support that they need.
The barriers within the long-term care system have turned my independent life into a dream I have had to fight for. I recruit and train my own caregivers, who are hired through external staffing agencies and paid with funding from Minnesota’s Medicaid program. Every agency is different in terms of how they operate their business, use funds to pay caregivers, and communicate with the people they serve. Even though an agency is the official employer of my caregivers right now, I still shoulder the hours of unpaid labor that it takes to coordinate my team. I do so because I want to have a choice in the people I bring into my home and the way I schedule them, and I do not want any agency making these decisions on my behalf.
In the midst of the pandemic, I have recruited my own staff and fought for them to be compensated above minimum wage by the agencies. I have pieced together coverage during a direct care workforce shortage, which continues to restrict options for disabled people across the state. I have switched staffing agencies three times over the last two years due to unethical business practices that have left my caregivers — people I care about dearly — without paychecks for days on end. I have done all of this while balancing on thin ice, worried that I might misstep and appear “too independent,” in the eyes of the county I live in, to qualify for the 24-7 direct support services that I need.
I have refused to accept independent living as only a dream. I have refused to compromise on my autonomy. I choose to fight every day for the life that I have built in Minnesota: a life filled with friendship and love, travel and adventure, and anticipation for the future. It has been a choice to fiercely and stubbornly advocate for myself. It has been a choice to embrace and love my existence as a disabled person, exactly as is.
I have been privileged enough to be defiant. I understood some of the complexities of this system before I moved to Minnesota. I moved to a county with a well-funded human services department. I learned what language to use during intakes and evaluations to qualify for the right level of services. I grew assertive enough to ask questions in meetings with case managers and service coordinators. I have family members who will advocate for my needs if I am unable to. I have the privileges of being a white disabled person with a college degree. I do not have an intellectual disability. I did not learn English as a second language.
My level of privilege within this system is the exception, and not the norm.
I carry the weight of knowing that the long-term care system in Minnesota has failed other disabled community members who need support. Many people have been forced to move into congregate settings because they are unable to find caregivers to work in their own homes.
The low wages set by most direct care agencies has led to an incredibly high turnover rate among caregivers, which jeopardizes people who rely on consistent services. Despite the inequities I have seen, Minnesota’s long-term services are ranked first in the nation, which illustrates the alarming barriers that disabled people face in other regions of the country.
What I Want to See
- Our state’s long-term care system needs to be better designed to support disabled individuals and the people that assist them. Increasing caregivers’ wages is a start. As of July 2022, the statewide minimum wage for caregivers is $15.25 per hour. Prior to October 2021, this wage was set at only $13.25 per hour. The Service Employees International Union has made slow progress in their legislative efforts for wage increases, but it still isn’t enough. We cannot retain invaluable caregivers, who allow us to meet our basic needs and live to our potential, if they cannot also take care of themselves and their families with today’s rising cost of living.
- The voices of disabled people and their allies need to become the driving force of change within this system.
- We need access to care options that meet our individual needs and give us autonomy over who we hire and train. We need our caregivers to be equitably and reliably paid. We need networks of paid and on-call support so that we can safely navigate emergencies. We need structural support in recruiting caregivers so that the burden of finding people is not solely placed on the individual.
- We need a system that operates in the interest of serving individuals, and not in the interest of directing state funds to agencies and group homes.
I do not accept the narrative that baseline survival is all that disabled individuals and their families can hope for. We deserve to thrive in our homes and in our communities. We deserve to lead meaningful and self-directed lives. Even if it means living independently with ten different roommates.