Summer 2002 Newsletter
One Consumer's Story
These days we hear much about affordable, accessible housing. We also hear about the lack of affordable, accessible transportation and how difficult it is to work through the often-maddening maze that is "the system." We hear about these things and we even talk about them sometimes, but do we really have a concept of what the words mean?
Following is a true story written by Lucinda Smith, Community Action Specialist, BRILC, that brings some of the immediate problems home.
Disability. What does the word mean to you? Does it remind you of a friend or relative whose life was altered through accident or illness? Is it part of your identity? Does the word "disability" fill you with anger or pity, or do you try to just ignore it? What if you literally couldn't walk away from the word and all it implies?
Centers for Independent Living have been advocating for independent living for people with disabilities for several years. Progress has been made and continues to be made, and everyone shares in the benefits of greater accessibility. Laws like the 1973 Rehabilitation Act, Section 504 Regulations for accessible housing and transportation, and the Americans With Disabilities Act form the foundation for both community access and Civil Rights for people with disabilities. Legal standing unfortunately can't open the doors of access throughout the nation, however. Much remains to be accomplished. As you will see through the eyes of one young woman, the social fabric is far from seamless when it comes to rehabilitation and independent living following catastrophic injury. Here is one person's journey through "the system".
Tracy W. was 33 years old at the turn of the century. She lived in a housing authority property with her fiancé and two children. She had hopes of marriage and watching her children grow. Her family also lives in the area and they had the kind of "stop over and visit" relationship many of us cherish. Tracy had worked at various times in her life, but now she was staying home to care for her daughter and son. Her daughter had ear problems from early childhood, resulting in the eventual rebuilding of her left eardrum. Her son has ADHD. Despite these issues, Tracy was young and full of life and hope. She dreamed of the cozy house with the white picket fence someday and it all seemed within her reach.
All that changed with a single motor vehicle accident on February 19, 2000. Tracy and her fiancé were in a van with relatives, traveling. She has no memory of the accident or the immediate aftermath - she woke up a month later in The University of Virginia Hospital in Charlottesville. Tracy sustained a head injury and a broken back in the accident. When she woke up in her hospital bed, she had a tracheotomy and found her present circumstances far different than before.
In March, soon after waking from the coma, Tracy was transferred to Sheltering Arms Hospital in Richmond because she was still using a ventilator. After she came off the ventilator, it was time for speech therapy and further stabilization. "I had to learn to talk all over again, because of the trach and because of my head injury," Tracy said. In addition to her head injury, the broken back left her paraplegic with no sensation below her waist. Rehabilitation included using a sliding board to get moving again. "I was put through the program so fast - sometimes I was given pain medication and then sent to therapy. It was like being stoned." Just over two weeks later, Tracy was transferred, yet again, to Carilion Roanoke Memorial Rehabilitation Center. At the Rehab Center she began rehabilitation in earnest: lifting weights and doing mat work in addition to using the sliding board to try and regain a sense of her changed body. In order to learn to transfer herself from the bed to the wheelchair and back again, Tracy would have to become much stronger physically. These early exercises were simply to keep her moving and build strength. Tracy stayed at Carilion for two to three months.
When her rehabilitation there was finished, Tracy was sent home to her apartment at Jamestown Place. At the entry were two steps, and the only bathroom in the apartment was upstairs. For now, this didn't matter to Tracy - she was still in a hospital bed. Her fiancé made arrangements with family for her care during the day, and she also had home visits from a physical therapist. Her children had been sent to live with relatives after the accident, but before they could return home, Tracy's caregiver arrangements fell through. Her fiancé had also been injured in the accident, though not as seriously as Tracy. Under the weight of post-accident medical realities, Tracy's dreams of marriage and a stable family life crumbled. Her fiancé left, as did the family members who attempted to help with her care until she could fully rehabilitate. Tracy tried to care for herself, but she couldn't manage without learning the self-care skills she had neither the training nor the physical strength to master. She still could not transfer herself from bed to chair and back. She lost contact with her children and with other family members, although she was still living in the apartment she had before the accident.
Finally, Tracy's aunt reached out for help, because Tracy could not care for herself and there was no one else to help. Five months after the accident, Tracy was moved to a nursing home in Roanoke, a nursing home, because she had no other accommodation. At the nursing home, Tracy was offered physical rehabilitation regularly, but remained unable to use her arms to lift her legs, a major hurdle in achieving self-care. She was still not taught to transfer herself from bed to chair and back, for reasons not known to her.
In December 2000, Tracy suffered yet another setback - she developed pneumonia and had to be hospitalized. Ironically, her physical therapy orders allowed for only a specified number of sick days, and when Tracy exceeded the allotted sick time during recovery from pneumonia, she was dropped from physical therapy. Her only other option was to work with student therapists. Between the students' inexperience as physical therapists in training and Tracy's lack of knowledge and ability to care for herself, she became frustrated and stopped these sessions after a month. She longed for the professional therapist she had before contracting pneumonia, but no longer qualified for those services. When asked what she did during this time, Tracy replied, "Lay here in bed, watch TV, do word search puzzles." The nursing staff would come around and get her out of bed daily and she could go outside with other residents and join group activities. Most activities were geared toward older residents, although she did like the movie showings and Bingo night. However, she could only push her own chair a little way down the halls without tiring.
On occasional outings to the mall with her brother, Tracy experienced the realities of life in a wheelchair. "I never paid attention to wheelchair ramps before," said Tracy. "My brother was pushing me up the ramp to First Union Bank at Tanglewood Mall and I asked myself, 'how steep is this ramp anyway? Will I ever be able to push myself up it'?" Simple tasks, like going to the bank or the grocery store, were different when sitting down rather than standing up. Most public entrance doors lack push plates which allow a person using a wheelchair to open doors themselves. Mostly, though, Tracy stayed at the nursing home and passed the time however she could. Before her accident, a "good day" was that sense of accomplishment many mothers experience: the satisfaction of knowing her children were content and well-cared for. Now, Tracy came to define a "good day" as one spent free from pain, free from the stresses of nursing home life, or a day when time did not drag by.
Tracy did join in a group at the nursing home led by an Independent Living Coordinator from the Blue Ridge Independent Living Center (BRILC). Staff from the center visits the nursing home every week to assist residents with independent living issues, answer questions, and particularly to offer assistance to people like Tracy who are well below the age of most nursing home residents. In March 2001, Tracy became a BRILC Consumer. She set several goals for herself, including wheelchair repairs, entering Woodrow Wilson Rehabilitation Center (WWRC) to complete her rehabilitation and to find another place to live. In another strange twist of burecracy, Tracy needed a permanent residence in order to be accepted for further rehabilitation at WWRC. Without rehabilitation, Tracy was unable to manage self-care, and the biggest impediment to completing rehabilitation was lack of affordable, accessible housing. Her family offered no assistance and living at the nursing home was not an acceptable solution. "Every month, I would hear that they were working on a solution and maybe I'd move out at the end of the month," said Tracy. "But then it would fall through and they'd start all over again."
Within several weeks of coming to BRILC, Tracy had wheelchair repairs made, and had applications in to WWRC and the Medicaid Waiver program which would allow her to live independently once her rehabilitation was complete. Over the course of the next ten months, BRILC staff called several different potential housing providers for Tracy. The older, affordable housing was not accessible. The accessible, newly constructed apartments were not affordable. The places which were both affordable and accessible were already occupied and not available. Although the Housing Authority has accessible units, Tracy could not return there without a personal care attendant. Without an address, she could not qualify for the Waiver program which would allow her to hire an attendant. When asked to name one thing she would like others to know about the experience of moving into a nursing home due to lack of affordable, accessible housing, Tracy said, "It was devastating. I came here when I was 33. Now I'm 35." When asked what she most wanted the community to understand about her experiences, Tracy replied, "The income limitations for people with disabilities, and specialized housing for wheelchair access."
One year after setting independent living goals, Tracy finally signed a lease for an affordable, accessible apartment. "I just want to be able to take care of myself, to live independently," said Tracy. "Self-sufficiency would make me feel whole. I don't want to be dependent on anyone else for care." Rehabilitation is a strictly physical process, and it can produce anger and frustration at not being able to follow simple instructions. Dealing with the emotional aspects of injuries or therapy is a separate issue, not part of the physical rehabilitative process. Tracy remains at the nursing home while completing paperwork and routine medical screening. Participants at WWRC must be free of wounds and sores before beginning the program. When these issues are resolved, Tracy will at last be able to make significant strides toward independent living, more than two years since her accident.
As a community, we need to ask ourselves if localities have kept pace with the medical community in providing services for people with disabilities. "My UVA bill alone was a quarter of a million dollars," said Tracy. "The entire bill is about three million dollars." Another way of looking at this issue is to realize that the medical community has invested three million dollars to save Tracy's life and to restore her to society with as much mobility as possible. As a person with paraplegia, her potential for rehabilitation and quality of life is good. Yet, for the past year Tracy has lived in a nursing home due to lack of affordable, accessible housing.waiting to be fully rehabilitated. As a result of the accident, Tracy lost not only the use of her legs, but her children and fiancé. Her remaining goal is to attain self-sufficiency and community access. Full rehabilitation is now possible for her, barring additional setbacks, but how long will she have to wait for community accessibility?
