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.