While people in society believe that horror stories are just for Halloween, many people with disabilities live in horror stories as they are trapped in nursing facilities where abuse, neglect, and other horrors happen on a daily basis. These are their stories.
My name is Olivia Richard. I lived in a nursing home for a while when I was just 25 years old. I was put there for "rehabilitation" after an infection paralyzed me from the stomach down. I was going through my own grief and acceptance process while surrounded by death, dying, and hopelessness. One day, I got a visit from a few of my close buddies. We were hanging out in my room having a good time, while my two other roommates were yelling at us to shut up and get out. All of a sudden, we hear a loud thud coming from the single-person occupancy infection control room that was tucked in the corner. We and all of the other residents poke our heads out and come into the hallway to see what's happened. The nurse and CNAs were in these yellow disposable gowns with foot covers, masks, and head covers on, covered in blood (which got everywhere in the hallway), screaming back and forth to each other questions like "is she on blood thinners?!" The biggest question was whether she was a Do Not Resuscitate, and nobody was performing CPR on her. Instead, staff members were yelling at all of us to get into our rooms and close the door. They were making sure we wouldn't witness what they did next.
This poor woman died on that floor, bleeding out. And I watched her die.
The memory of this will haunt me forever.
In 2011, a woman at the Whitehall Healthcare System of Ann Arbor in Michigan was hospitalized because of maggots in her catheter and genital area. Staff noticed the maggots around the woman's catheter during routine checks but initially did not document the discovery. Once documented, clinical corporate staff instructed the onsite treatment to be documented as "debridement" – (removal of dead tissue) rather than "maggots." It would be days before she would receive treatment at a hospital, where she was also found to have an undiscovered hip fracture that was causing her severe pain. Later that year, another woman in an Oakland County nursing home who had a trach had been coughing more than usual but she was not immediately assessed because staff was "rushed". The woman’s condition became so severe that emergency medical services were called to the facility where they found her airway obstructed by maggots.
New York Shit Show
The unit I was on was short staffed ... There was one aide assigned to an entire unit of residents. It was during a night shift, so mostly everyone was in bed, including me. I needed to use the bathroom, but when I reached for the call button to ask for assistance, I couldn't find it. I looked to the left and realized the call button was on the nightstand, too far for me to reach. The aide that put me to bed forgot to give me the call button. I knew I was screwed immediately. It was a night shift. I was on my back and comfortable for the moment, but I knew as the night went on, that would change drastically. And let's not forget, I had to use the bathroom ... So I made a choice. I knew my chances of getting someone's attention were slim. I knew that unless someone walks by and hears me screaming for help, I wasn't going to get any help. So I screamed until I got tired. I screamed for hours. I ended up getting tired and fell asleep. I was sleeping in piss and shit, my back was on fire, and I was too tired to even care. I laid there for hours, waking up periodically, hoping someone would be in my room.
Wisconsin Rat Droppings
I had a traumatic brain injury when I was 16 years old. I lived in a TBI unit for 2 years until I turned 18. When I turned 18, I was transferred to a nursing home. My mom pleaded with the Family Care (my long term care provider) to allow her to take me home; an 18 year old does not belong in a nursing home! Family Care fought my mom on installing a chair lift so I could get into her house. They approved that but then we had to fight about widening the door frame so my chair could fit inside. During the 6 months that this occurred, we found rat droppings in my nursing home closet, male residents frequently came into my room unattended, and my blood sugars were not at all stable. Finally, Family Care moved me into a group home because my mom threatened to bring me home even though the construction on her house wasn’t done yet. I’m 21 now and have graduated high school and finally am living in the community.
HOW DO WE STOP THE HORROR?
Implement the Community First Choice Option!
The Community First Choice (CFC) Option will revolutionize the Long Term Supports and Services systems across the nation. CFC is a community-based, Medicaid state plan to provide assistance to people with disabilities and seniors in the community, in their OWN homes, instead of nursing homes. Every state that chooses to implement CFC will receive federal funds, resulting in millions of dollars to the state!
- CFC supports choice, independence, and integration, in accordance with the Olmstead
- CFC is person-centered and directed
- CFC says services must be provided in a home and community-based setting and CANNOT be provided in a nursing facility, institution for mental diseases, or intermediate care facility.
- CFC must be provided on a statewide basis
- CFC will eliminate Home and Community Based Services waiting lists!
- States that implement CFC will receive an additional 6% in federal matching funds, with no sunset.
- California, Maryland, and Oregon have already begun to successfully implement CFC in their states.
OTHER IMPORTANT DETAILS
CFCO offers a unique opportunity to change the way the state, providers, and insurers think about the provision of long term supports and services. CFC was designed to ensure that the supports are provided in a manner that allows people to lead an independent life with a strong focus on consumer direction, and allows for individuals with disabilities to receive vital services without being in an institution -- in other words, in their community! CFC is structured to allow states to work within their unique Medicaid system of state plan services, waivers, and managed care services. The decisions for structure, implementation, and monitoring are the responsibility of the State's CFC Development and Implementation Council, which must be comprised of mostly people with disabilities, seniors, and their representatives.
HOW CAN YOU HELP?
Contact your state Medicaid Director and urge them to work with ADAPT and other disability groups to complete a fiscal analysis and establish the council to make the Community First Choice Option a reality for people with disabilities today!!