My dad, Rick, is a stunning example of a life that was stolen. In August, 1999, he had a heart attack, which led to global brain injury. When he recovered, he was sent to a rehab center, but staff couldn’t deal with the results of his brain injury – agitation, screaming, and swearing, and told my mother, Alice, that he’d have to go “elsewhere”.

Elsewhere turned out to be a nursing facility. My mother protested the arrangement, but the rehab folks swore that she couldn’t care for him at home, so with a sigh of resignation, she put him in one of the “better” nursing homes. That’s when things went south.

The morning after his admission, we came to see Rick, and noticed that he was literally covered in urine and feces. Though in shock, we did take pictures. My dad was screaming about “lizards crawling all over me”, which confused Mom until she took a close look, and discovered mouse droppings all over his body. They were also in his drawers, and in his food, which was placed far out of his reach.

For 11 days, Rick lay in bed. He was not fed or bathed unless Alice did it. His pills were given to him after being dipped into a communal container of yogurt located at the nurse’s station. His catheter was not changed. Worried, my mom went to an independent living center. She knew that they helped people with disabilities to live independently in the community, and she wanted to see if they could do something for Rick. Fortunately, there was a home health agency on the grounds of the Center, and the nurse went to the nursing facility to visit him. Her assessment: Rick wouldn’t last another week in that place.

How right she was! On day 13, we noticed that Rick seemed really ill. He complained that he was hot and cold, but the nurses did nothing. Alice took Rick’s temperature, and found it was 105 degrees! She immediately took him to the emergency room. When she got there, the E.R. staff called the nursing home doctor, who would not give permission to treat, so Alice fired him on the spot, and Rick was able to be treated. His catheter, which had not been changed since he got to the nursing home, became blocked, and Rick needed immediate surgery to save his life. He had also acquired a permanent bacterial illness due to the filthy conditions in the facility.

When Rick got better, his new doctor felt that he could be cared for at home, and set him up with a home health care agency so that he could get attendant services and nurse visits.

Ironically, his incarceration in a nursing facility occurred six weeks after a landmark Supreme Court decision was handed down. The Olmstead decision states that “unnecessary institutionalization is discrimination”. Unfortunately, on the tenth anniversary, many states still have no real Olmstead plan to transition people with disabilities back into the community.

Rick’s placement was the result of the bias inherent in our long-term care system. By law, states must offer nursing home care, while home care is merely optional. During budgetary crises, optional services are among the first items cut.

The Community Choice Act (H.R. 1670, S. 683) addresses this bias by mandating home care, thus providing real choice to people with disabilities and seniors. It must be included in the health reform bill being crafted, which has no provisions for long-term services and supports. Rick would have agreed that health reform without this crucial element is not reform. He died in 2006, of the illness he acquired in the nursing facility, his life ultimately stolen due to biases in our long-term health care system.