by Lori A. Wood
What would you do if you found yourself completely alone in a medical emergency? Would you be desperately calling for help with none in sight? It’s an especially unpleasant thought for anyone with a disability to ponder, but, for one Florida woman, it became a terrifying and tragic reality.
On August 27, 2004, two weeks after her thirty-ninth birthday, Virginia “Ginny” Ellis, a quadriplegic, tragically died. Her mother, Barbara, details what happened:
“She had a small puppy, and was taking him out for a walk. She usually didn’t go in the park. We don’t know whether the puppy got free and went in the park, or whether she followed him. She went into the park, and there was a deep dirty and sandy area, and she got her [motorized] wheelchair stuck in the sand. They [the authorities] surmised that she was hollering for help, and no one heard her. There were houses around the park, but with it being the middle of a day in August, people’s windows were closed up tight and their air conditioners were on, so no one heard her calling for help. Independent as Ginny was, after calling for help for a length of time, she decided that she would get herself out of her wheelchair and onto the ground, and she started dragging her body out of the park. Evidently, between the exhaustion of that effort and the heat, she fainted and became unconscious, with her face going straight down into the sand.”
As she breathed in increasing amounts of sand and dirt, Ginny eventually asphyxiated. Her body was found by neighborhood children, just one hundred and forty-eight feet from her wheelchair.
“She was very strong and independent, and had an amazing attitude. She moved to Florida eighteen years ago, from Middleboro, Massachusetts, and decided that she really liked the area.” She went to school and bought a condo; life seemed to be going her way. Barbara recounts:
“The accident that paralyzed Ginny was on Christmas Eve day, 1998. She was on her way to work, and hit a tree . . ., which left her a C4-5 complete quadriplegic. No other cars were involved. Before the accident, she traveled the state repairing office equipment, but because she couldn’t drive after the accident, she had to learn a new career. She studied Computer Helpdesk. I don’t know the technical term, but if you work in a corporate environment, all departments are connected by a mainframe computer. If a person had a problem, they would call the helpdesk, and they would talk them through it. She enjoyed fixing computers.
Barbara remembers all too well the intense time that followed her daughter’s injury and how far Ginny had come since:
“…there was a short time of anger, but she was bound and determined to succeed and become independent again. She went to a rehab facility in Melbourne, Florida for three months, and worked very hard to be able to hold a spoon and dress herself. We came home, and she continued to work hard in physical and occupational therapy. She was always looking for ways to better herself. Her spirit was phenomenal. It was her feeling that she could do anything she wanted to do, she just had to find a different way to do it.”
Ginny’s determination was paying off; she had regained some movement in her right toe, ankle, knee and hip, as well as her left thigh. Eventually, Ginny was diagnosed as an incomplete quadriplegic.
Ginny’s spinal cord injury changed her life in many ways. As is frequently the case even functioning around her home became a challenge. Since the bedrooms and bathrooms in their condo were upstairs, a certain amount of creative thinking was needed. Ginny’s bed was moved to the dining room, and as Barbara explains, bathing was a bit different:
“We had a fenced-in patio in the back, and a kitchen window above the sink. I showered her with the spray hose that you spray dishes with. You just learn what has to be done, and do with what you have. We spent the next few years searching for a single-level house with big enough rooms to maneuver a wheelchair through.”
The two moved into such a house in Apopka, a suburb of Orlando, in February 2004. “It was one more hurdle toward her independence that we had finally met.”
Barbara related that, sometimes, Ginny would stretch her independence just an inch too far and fall out of her chair. She then would drag herself to the phone for help. “I had cordless phones all over the house, so she had access to a phone, no matter where she was,” says Barbara. “When she fell, paramedics would come and lift her back into her wheelchair.”
For those with disabilities, obtaining access to emergency services isn’t always easy. According to Federal Communications Commission rules, 47 CFR 20.18(b), a call to 911 is free, and you need not buy minutes, or subscribe to any cell phone carrier to take advantage of this, you just need to keep the phone charged and with you. The trouble is: not many people are aware of this capability.
“Ginny would be alive today if she had known of this law,” says Barbara. “I now inform everyone I can about the law. It’s been on the books for quite some time. I’ve talked to probably three hundred people about the law, and only thirty knew about it. It basically says that all cell phone companies will relay 911 calls to the nearest emergency station. It doesn’t have to come from one of their own customers. If you look on your cell phone bill, you see that you’re paying a 911 service fee. People wouldn’t think about not having to call 911, because they have a cell phone. But, for people living on Social Security or disability payments and paying for college, rehab and therapy, cell phones are considered a luxury. Ginny’s Social Security check was seven hundred and forty dollars a month. It doesn’t leave a lot leftover for a cell phone.”
At http://www.usedcellphones.com/contactus/phonerequest.cfm, a person may request a free, used cell phone, specifically for emergency use. But as Barbara expands, “The unfortunate thing is that, after almost six years of contact with the disabled community and its institutions, we got information and flyers on everything from counseling help to proper nutrition. Not in any instance was there ever mention that 911 is free with a cell phone. It doesn’t have to be activated for users to get 911, and that’s the key. I’m trying to get a grant to have posters, flyers and brochures made about this. Hospital caseworkers and social workers really need to get this information out to everyone. For this information never to be told or heard about is just unreal.
Ginny had pockets on either side of her wheelchair, and would carry information about autonomic dysreflexia, lists of her medications and emergency contact numbers, so that, if something were to happen, people could help. We’d have had a cell phone, too, if we’d have known.”
Since Ginny’s death, Barbara carries a cell phone and keeps it charged for emergencies. “I keep one in the glove compartment of my car, one in my purse, and my family has them,” she explains. “They aren’t just for the disabled. A cell phone can be an effective emergency tool for the elderly and young children. You don’t have to be technically proficient to get help. With enhanced 911, they can pinpoint your exact location. With all the cell towers that have since been erected…I doubt that there is any place that a cell phone will not reach to the closest tower.” When you most need it, a cell phone could make the difference. It could save your life or that of your loved one.
Reverse 911 Guardian programs, like the one featured here: http://www.cityofaventura.com/police/r911.htm, also have shortcomings. While its aims are admirable, much more responsibility is required of users, which people with certain disabilities may not be able to fulfill. In the Florida program, for instance, on days specified by those who qualify, a computerized telephone contacts them at home. By way of response to the call, users must press three buttons on their telephone keypads to verify their well-being. If no such response is received, a dispatcher attempts to reach the resident. If that doesn’t work, a designated neighbor on the user’s application form is contacted. Police officers are only dispatched to the home as a last resort. Users must notify police ahead of time if they won’t be home to take the call. It is common for these types of programs to have restrictions, as well, such as requiring users to be past a certain age.
“There are many emergency only cell phones that have been adapted for the disabled. One has a big red button in the center that you can reach with any part of your body. There are others in which just one press of any button will dial 911.”
A more useful option for the disabled might be the LifeFone® Emergency Alert Response Device, found at http://www.lifefone.com, which can be worn as a pendant around the neck. After filling out a profile that contains emergency personal contact, medical, physician and hospital information, as well as directions to their homes, the device is activated. Users simply push a button to get emergency assistance. With the aid of a communicating device that is placed in their homes, a signal is transmitted to a response center where operators are available twenty-four hours a day, seven days a week, and Emergency Services and the designated contact people on the user’s personal profile are notified. According to http://www.lifefone.com/dailynews.pdf, monthly monitoring by LifeFone costs less that one dollar a day. Still, Barbara cautions, “This is fine for a person who is homebound, but they do not work when you are even a very short distance just outside your home, and a little less than a dollar a day is still a lot of money. When Ginny first had the accident, they came around to us in the hospital wanting us to sign up for it, but we just couldn't afford it. It's a great service, but it has a limited use, and they have salesmen pushing their product all over the place, like the hospital just after Ginny's accident and the Orlando-based Center for Independent Living, which is the lead agency in the greater Orlando area for the disabled, but no one is telling you about cell phones’ free 911 service. Would it be so difficult for them to mention this when they try and sell you their product?”
The Lifeline® Medical Alarm, found at http://www.lifelinesys.com/content/how-lifeline-works/index.jsp, works in much the same way, but for slightly more than a dollar a day. The company provides it services in a wide variety of ways. For example, with the CarePartner® Telephone, loved ones of users can provide recorded messages to be played on a one-time, daily or weekly schedule, which can be used as reminders to take medication. Its TelAssure prompt reminds users to check in with the emergency response center at least once a month. Have trouble holding a telephone receiver? No problem. With the remote call answering feature, you can answer the phone with the push of the Lifeline Personal Help button.
The loss of a loved one is always devastating, particularly in cases where it may have been prevented. It is up to each of us in the disability community to make sure that in the event of an emergency no other calls for help go unheard. Perhaps, by doing so, we can see to it that Ginny’s death, as well as her mother’s desire to spread the word about this crucial issue, are not in vain.