The recent occupation of the New York State Nurses Association headquarters by ADAPT has again shed a spotlight on the role nurses play in our home care system. People with disabilities need caregivers but why should nurses have major input on how we choose to live our lives?
In 2003, after I went into respiratory failure from muscular dystrophy and became vent dependent, I was forced into a nursing home. My home state of North Dakota only allowed a nurse to manage my vent and trach and they wouldn’t pay for this to be provided in a community-based setting. I wanted nothing more than to return to my own apartment but I was stuck in a bureaucratic web of overbearing and unnecessary rules.
Managing medical equipment and devices is intimidating at first but it quickly becomes routine. It was frustrating to have these high priced medical professionals do things that anybody could do with some training. In fact, doing these so-called tasks doesn’t require a medical background. When I went home to visit my family, my father, who is an accountant by trade, took care of any respiratory need I had.
After three plus years in the nursing home, I decided to move to Montana where some home nursing is available. I have a live-in attendant but any other caregiver must be a nurse. The state pays an extreme amount of money on nursing when I could train and manage my own attendants for much cheaper. As an adult, it mystifies me that I’m not allowed to take on an amount of risk that I’m comfortable assuming.
The nursing lobby believes people with disabilities can’t be trusted to hire anybody we choose because it isn’t safe. We shouldn’t be surprised they have this attitude. Healthcare practitioners have been ingrained with the medical model of care when treating a person with a disability. They see us as something that must be cared for by “highly trained medical professionals.”
I doubt this medicalized mentality will completely vanish unless many more people with disabilities rise up and demand more control over our own lives. If we are to make measurable progress, the entire medical community must realize the long held credo that there will be nothing about us without us.
This guest-blog post is by New Mobility’s news correspondent, Mark Boatman. Boatman, who lives in Missoula, Mont., is a 2012 graduate from the University of Montana School of Journalism and is a frequent contributor of feature articles to NM.