Preparing for the Future by Listening to Stories
Still following the lessons of the Teachers (see earlier blogs to know who I am referring to here) I wanted to do something in the aftermath of hurricanes Katrina and Rita so I volunteered at the Red Cross as part of their mental health team. Once or twice a week, I went to the drop-in center and listened to people who had lost their homes in the hurricanes, to volunteers working the phone lines, and later to the volunteers returning from the field. These stories told me what had happened there, what people needed, and what I might do to help. I also learned from the volunteers returning from New Orleans and Mississippi how the work that they did changed their lives after they returned home.
One morning I was assigned to meet with people from New Orleans who were waiting to be interviewed by caseworkers to assign them relief benefits. I noticed an African-American man in his eighties, and I sat down next to him. I asked him what had happened to him during the hurricane. Somewhat reluctantly and so quietly that I had to lean close to hear him, he told me about the people that he had been living with in an assisted-living community in New Orleans. He said that before the hurricane, they had looked out for one another. The hardest part of the hurricane was that during the worst moments they couldn’t help each other. After many hours, they had been rescued by boat and dispersed to shelters where they lost touch with one another.
Now he was far away in Oakland, California. He worried about how his friends had fared. He was living with his sister, whom he hadn’t seen for years, and he felt uncomfortable in her large house. He believed that if he was able to do handyman work for her, he might have something to offer, but he wasn’t up to doing these jobs. He believed that he was a burden to her and that she resented his being there. He said that he had never wondered before where he belonged and who he could count on.
This man cried when he said that he might never return to his community and see his friends again. When I asked him if he might find people in Oakland who shared his experience, he sadly smiled at me and said that he hadn’t told anyone before about the people back home, and that speaking about them helped some. We sat together for a bit longer until he was called to the social services desk. The caseworker who interviewed him told me later that he seemed friendly and hopeful.
When I came into the center another day, I saw a young man with long dreadlocks sitting in the hall. He had come in early before the waiting room was open. I sat down next to him and asked him where he was from and how he had found his way to Oakland. He said that he had been on his own since he was thirteen. He had been living hand to mouth in New Orleans. After the hurricane, he had been sent to a shelter in Texas, but he knew that he had to get out of there. He wasn’t sure why he had come to Oakland, and he knew no one here. He said that he felt terribly depressed and that he didn’t know what to do or where to go. I noticed that he was carrying a Bible, and I asked him about it. He said that he had found it somewhere and that reading the Bible soothed him.
I went and brought another volunteer over, a woman who was a deacon at a local church. The three of us sat together and talked about the hurricane and how frightening it had been. This deacon said that her church might be able to help this young man, and she invited him to meet the pastor of her church that evening.
Later that day, I saw him reading his Bible. As I passed him, he nodded. I stopped to speak with him, and he said that he felt more cared about that day then he had in a long time. It shocked me to realize how little we had done for him and how much it had meant to him.
One afternoon, I came into the center and saw a group of women sitting
stoically and separately in two rows, waiting for help. They were silent and looked exhausted. One of the women spontaneously turned around to a woman behind her and asked her where she was from. Another woman moved over a seat to join them. In a short time, this group of African-American and Caucasian women, who had never met before and in other circumstances might never have spoken to one another, began to tell each what had happened to them and to their families during the hurricane. They leaned closer as they listened to each other’s stories, and their voices got louder and more animated. When one of them was called to meet with a caseworker, the group reluctantly let her go. In a short time, their stories connected them to one another. They gave each other advice and encouragement and even watched each other’s children.
After the first phase of the disaster was over, I was asked by the Red Cross mental health coordinator to interview volunteers who were returning from Louisiana and Mississippi. These volunteers were from Oakland, and some of them had never been to the south before, and some had not been through any previous disasters. They had little training, and they just went and did what they could. Their stories, one step removed from the victims of the hurricanes, gave me added perspective on how stories of action transform the helper and the helped.
An African-American director of a social service agency told me that she had responded to the disaster because she wanted to push herself beyond her comfort zone, even though she felt terrified before she left. She spent six days in the field in Mississippi after Hurricane Rita. At first her group lived in the basement of a Presbyterian Church. The conditions were poor but manageable. The hardest part was the cold at night, which affected her bursitis. After three nights, ten mental health workers were moved to a beauty salon two blocks away, which she said was a palace by comparison in that they had air mattresses, warm showers, and heat at night.
She said that two to three hundred people formed a line every day outside the relief center where she worked with other volunteers. The people in line had to be let into the center one by one to receive benefits. Her job was to act as a traffic cop, keeping people in line and directing them at the right time to the right person. She said that some people had lost everything, and still these people waiting on line for hours were warm and friendly. She said that even when she had to set limits, she could do it with humor. She teasingly told two ladies who kept trying to sneak ahead in line that she would be glad when she would be rid of them. They laughed together about their situation as she sent them back in line. She had many conversations on the fly, checking in with people who came back day after day. The people she spoke with told her how much they appreciated her concern for them and her willingness to ask about their situation. Sometimes she sat with people who were having a hard time emotionally. She listened to their stories and gave them support and asked them what they had done to survive the hurricane. Telling her about their survival had a calming effect.
Now back home, after facing the losses of others, she appreciates what she has. She is taking the possibility of an earthquake in Oakland more seriously, and she has made disaster preparations that she had been meaning to do for years. When she returned to her clinic, she told everyone about her experience. When one of her coworkers said that he would like to volunteer but that he couldn’t imagine working in such a situation, she told him about her anxiety before she left. She told him that she had always seen herself as an introvert and had had to push herself in order to go. She said that in the past, she would have been reluctant to encourage someone else to volunteer, but her experience made her more willing to challenge him.
Recently, when her husband was facing unemployment, she again felt confident rather than afraid and believed that he too would push through. She said, “The more work I do in the field, the less afraid I feel, and the more willing I am to challenge others to join me in stepping out of our comfort zones.”
Phillip, a middle-aged Caucasian computer engineer, spent thirteen days in the field. He thought that he would be working in a shelter, but he was sent to Dallas to set up a call center that handled payment problems for victims of the hurricanes. When his team arrived, they were met with six thousand callers waiting for payments. There were many problems with the software and the payment system. Field caseworkers had not been well trained in filling out the intake forms. Some of the forms that came through to the payment center were incorrect and had to be sent back, and many others were fraudulent and had to be refused. Moving the money to clients was difficult and frustrating. When Philip arrived, the call center had less then ten people working one shift a day. By the time he left, there were thirty people working around the clock, and money was being transferred to the people who needed it.
Phillip felt good about the work that he had done and the people that he had met. He continues to stay in touch with them. He feels that he is more alert in his own life and that he was fortunate to have gone and fortunate to have returned. Now that he is back home, he finds himself telling friends and co-workers the stories of his time in the field. He plans to volunteer on weekends, and he is ready to go again when there is another disaster.
Robert, a sixty-year-old African-American man, is a long-time activist. He has volunteered many times and gone to places far from his home. What impressed him most this time was how people different from one another came together and worked at their best. There were no leaders in the field, almost no training, and the group organized itself by rising to challenges as they came up. His team worked in the parking lot of a Southern Baptist Church that set up a mobile kitchen. In the first days after the hurricane, everyone, rich and poor, came for food. No one had food, heat, or electricity. People who had never come in contact with one another before the hurricane stood in line together. They asked each other about what had happened and how they were doing. Rather than waiting to be told what to do, the volunteers responded to whatever needed to be done. They worked as a team, trusting that if something needed to be done, someone would do it. Robert said that it is too bad that we don’t live this way when there is no disaster.
The water has receded, but the aftermath continues. The victims and helpers are dispersed, but few of the problems have abated and planning for future disasters is still barely underway. We can only hope that the stories of the people closest to these hurricanes won’t be lost, but that instead their stories will be gathered and provide us with the knowledge we will need to meet future disasters.
Tuesday, July 31, 2007
Wednesday, July 25, 2007
Survival Story from India
Ellen's Voice The story above is a survival story from India. It is part of a women's project which encourages women to benefit from the work of stories. As my book, Blowing on Embers, nears publication I am beginning to speak to the media about what I mean when I talk about the work of stories. So here's my current take on it. Disasters, public and private, make us directly aware of the uncertainty of life. In a crisis or during years of struggle we are flooded with emotions while what is required of us is to think clearly and to choose possible actions. We are caught in the tension between what we can't control and what with the help of others we can effect. The work of stories is to help us prepare for what may lie ahead by strenthening our survival narratives. We do this not only by listening to the stories of others, but by choosing threads from those stories that we can weave into stories of our own.
Angur's story above is a great example of a survival story as the work of stories in progress. I hope you know ofothers which you will send to me to post.
Friday, July 13, 2007
Racism and Human Rights Abuses Still Reign
*"The White Tree: Old Hatred in the Deep South"*
This was sent to me by a reader. It offers us another opportunity to take action and refuse to be silent in the face of injustice.
During the past two years a saga has been unfolding in the small town of Jena, Louisiana that takes us back to an era that the United States would like to think has long gone by. An era marked, in this small community, by violent and grotesque hate crimes and inequality, to a time when Black Louisianans were taught to stay in their place or pay the consequences. Sadly it seems that time has passed by unnoticed in this rural southern town, which still clings to the "old" Southern way of life. Blacks and Whites do not socialize, and racism is regarded casually as a natural part of life. The story that proceeds is one that seems out of place in an era when we have a Black Democratic contender for the Oval Office. It is a sobering reminder that old ways run deep, and hate and fear do not fade away easily, especially in the Deep South. Unfair trials, intimidation and notions of White Supremacy still deeply affect people of color living in this sleepy Louisiana town, which has recently been rocked by international news coverage.
"The White Tree" On August 31 of 2006 a small group of Black students at Jena High School asked permission from their school board to sit under the schoolyard tree, dubbed the "White Tree". The White Tree was so named because of an unspoken rule which, since the schools inception, barred Black students from enjoying its shade. The school board told the kids they could sit anywhere they want. However, the next day when the students arrived to school the tree was adorned with three nooses, two of the nooses were black and one was gold-the school colors. To White residents the noose was dismissed as nothing more than a tasteless prank, but to the Black community it was a threat and a harkening back to the times of public lynching and burnings. The racial tension ran high between White and Black students of Jena High in the days that followed. The school board's decision to lessen the punishment of the boys involved in putting up the nooses to simple slap on the wrist- three days suspension instead of the recommended permanent expulsion, only exacerbated the tensions. The school board dismissed the hanging of the nooses as a harmless "prank", and the superintendent told the Chicago Tribune that "adolescents play pranks…I don't think it was a threat against anybody." The harmless "prank" was not taken so lightly by the black community of Jena. Perhaps it is because of Jena's not so "harmless" past. Jena's dark past is no secret, the racism is not veiled. If you search for"Jena Louisiana" on Google images, the first two pages contain photos of lynching, burnings, and Klansmen.On September 6th, Black students staged an impromptu sit in under the "White Tree" to protest the light punishment given to the students who hung the nooses. A school assembly was quickly convened. Surrounded by white police officers, the White District Attorney General, Reed Walters, warned the Black protesters that if they did not stop making a fuss over this "innocent prank…I can make your lives disappear with the stroke of my pen", implying the filing of maximum or death sentences against the Black students involved.The events that followed blatantly show the extreme hatred, fear and institutionalized racism that dogs citizens of color in Jena. About three months after the noose incident a Black student was assaulted by a group of White students as he entered an all-White party held at a locale called the Fair Barn. The victim was struck unaware in the face and then beaten with beer bottles and punches until adults intervened. There is no documentary evidence that any of the White students were ever charged.On December 4, 2006, a few days after this event, during lunch hour at school, the same boy that was beaten at the Fair Barn party was verbally assaulted by one of his attackers. The White boy used the N-word, and taunted the boy for getting his "ass-whipped" at the party over the weekend.The White boy was also close friends with the boys who hung the nooses. An altercation ensued, with the White boy reportedly being knocked to the floor by a group of six boys, although only three of the six boys charged were actually involved, and rendered unconscious. The victim, Justin Barker, was in the hospital for three hours before being released and attending a school ring ceremony that evening.The boys involved in the attack were arrested in under an hour and charged with aggravated assault and premeditated aggravated assault. Then, in an astonishing move, District Attorney Reed Walters, the same man who threatened to "wipe [their] lives out", upgraded the charges against the alleged attackers to conspiracy to commit second-degree murder and attempted second-degree murder, charges that carry a maximum sentence of life in prison.
On June 28th of 2007 Mychal Bell, the first boy to go to stand trial, was found guilty by an all-White jury and a White judge of second degree battery and conspiracy to commit second degree battery. All witnesses called were White.
Clare Bakota www.justdemocracyblog.orgGet Involved:Excellent Timeline of Events:http://friendsofjustice.files.wordpress.com/2007/06/responding_to_the_crisis_in_jena1.doc Sign this Online Petitionhttp://www.petitiononline.com/aZ51CqmR/petition.html The Jena 6 Defense Committee PO Box 2798, Jena, LA 71342 jena6defense@gmail.com
Friends of Justice 507 North Donley Avenue Tulia, TX 79088www.fojtulia.org
ACLU of Louisiana PO Box 56157 New Orleans, LA 70156 www.laaclu.org 417.350.0536.
BBC article:
http://news.bbc.co.uk/2/hi/programmes/this_world/6685441.stm
This was sent to me by a reader. It offers us another opportunity to take action and refuse to be silent in the face of injustice.
During the past two years a saga has been unfolding in the small town of Jena, Louisiana that takes us back to an era that the United States would like to think has long gone by. An era marked, in this small community, by violent and grotesque hate crimes and inequality, to a time when Black Louisianans were taught to stay in their place or pay the consequences. Sadly it seems that time has passed by unnoticed in this rural southern town, which still clings to the "old" Southern way of life. Blacks and Whites do not socialize, and racism is regarded casually as a natural part of life. The story that proceeds is one that seems out of place in an era when we have a Black Democratic contender for the Oval Office. It is a sobering reminder that old ways run deep, and hate and fear do not fade away easily, especially in the Deep South. Unfair trials, intimidation and notions of White Supremacy still deeply affect people of color living in this sleepy Louisiana town, which has recently been rocked by international news coverage.
"The White Tree" On August 31 of 2006 a small group of Black students at Jena High School asked permission from their school board to sit under the schoolyard tree, dubbed the "White Tree". The White Tree was so named because of an unspoken rule which, since the schools inception, barred Black students from enjoying its shade. The school board told the kids they could sit anywhere they want. However, the next day when the students arrived to school the tree was adorned with three nooses, two of the nooses were black and one was gold-the school colors. To White residents the noose was dismissed as nothing more than a tasteless prank, but to the Black community it was a threat and a harkening back to the times of public lynching and burnings. The racial tension ran high between White and Black students of Jena High in the days that followed. The school board's decision to lessen the punishment of the boys involved in putting up the nooses to simple slap on the wrist- three days suspension instead of the recommended permanent expulsion, only exacerbated the tensions. The school board dismissed the hanging of the nooses as a harmless "prank", and the superintendent told the Chicago Tribune that "adolescents play pranks…I don't think it was a threat against anybody." The harmless "prank" was not taken so lightly by the black community of Jena. Perhaps it is because of Jena's not so "harmless" past. Jena's dark past is no secret, the racism is not veiled. If you search for"Jena Louisiana" on Google images, the first two pages contain photos of lynching, burnings, and Klansmen.On September 6th, Black students staged an impromptu sit in under the "White Tree" to protest the light punishment given to the students who hung the nooses. A school assembly was quickly convened. Surrounded by white police officers, the White District Attorney General, Reed Walters, warned the Black protesters that if they did not stop making a fuss over this "innocent prank…I can make your lives disappear with the stroke of my pen", implying the filing of maximum or death sentences against the Black students involved.The events that followed blatantly show the extreme hatred, fear and institutionalized racism that dogs citizens of color in Jena. About three months after the noose incident a Black student was assaulted by a group of White students as he entered an all-White party held at a locale called the Fair Barn. The victim was struck unaware in the face and then beaten with beer bottles and punches until adults intervened. There is no documentary evidence that any of the White students were ever charged.On December 4, 2006, a few days after this event, during lunch hour at school, the same boy that was beaten at the Fair Barn party was verbally assaulted by one of his attackers. The White boy used the N-word, and taunted the boy for getting his "ass-whipped" at the party over the weekend.The White boy was also close friends with the boys who hung the nooses. An altercation ensued, with the White boy reportedly being knocked to the floor by a group of six boys, although only three of the six boys charged were actually involved, and rendered unconscious. The victim, Justin Barker, was in the hospital for three hours before being released and attending a school ring ceremony that evening.The boys involved in the attack were arrested in under an hour and charged with aggravated assault and premeditated aggravated assault. Then, in an astonishing move, District Attorney Reed Walters, the same man who threatened to "wipe [their] lives out", upgraded the charges against the alleged attackers to conspiracy to commit second-degree murder and attempted second-degree murder, charges that carry a maximum sentence of life in prison.
On June 28th of 2007 Mychal Bell, the first boy to go to stand trial, was found guilty by an all-White jury and a White judge of second degree battery and conspiracy to commit second degree battery. All witnesses called were White.
Clare Bakota www.justdemocracyblog.orgGet Involved:Excellent Timeline of Events:http://friendsofjustice.files.wordpress.com/2007/06/responding_to_the_crisis_in_jena1.doc Sign this Online Petitionhttp://www.petitiononline.com/aZ51CqmR/petition.html The Jena 6 Defense Committee PO Box 2798, Jena, LA 71342 jena6defense@gmail.com
Friends of Justice 507 North Donley Avenue Tulia, TX 79088www.fojtulia.org
ACLU of Louisiana PO Box 56157 New Orleans, LA 70156 www.laaclu.org 417.350.0536.
BBC article:
http://news.bbc.co.uk/2/hi/programmes/this_world/6685441.stm
Wednesday, July 11, 2007
Reader's Comment-Getting out the word
Syvlia Paull said...
good fight Ellen. You should submit this story to the Sicko community/URL. All it takes is one person with the courage and grit you have to change the world for the better.
7/10/07 7:35 P.M.
Will do Sylvia.
Ellen
good fight Ellen. You should submit this story to the Sicko community/URL. All it takes is one person with the courage and grit you have to change the world for the better.
7/10/07 7:35 P.M.
Will do Sylvia.
Ellen
Tuesday, July 10, 2007
Teachers show us how to stand up in opposition to injustice
Reflection on Teachers #3
As we continued to try to find a way to keep my husband Ron at home on a ventilator complex legal battles began. A friend introduced me to Bob Lubin an attorney who became our champion, pro bono, for four years. Working with our friends in the Pulleyblank Trust, we developed strategies for addressing the inequities in home care and raised money to keep Ron at home until our legal battles were won.
Ron wrote directly to Mr. Hewlettt and Mr. Packard, the founders of H-P. Neither responded. Through Ron’s human resources representative, Bob requested nursing care during working hours as a “work force accommodation for the handicapped,” a benefit written into the Disabilities Act. This was considered by H-P as an excessive accommodation, even though Ron was still an active member of his team at H-P Labs. H-P also briefly considered providing exceptional health benefits for Ron but decided against it. Ron had a final and unfriendly meeting with a corporate vice president. He was coldly rebuked for having gone over their heads and written directly to Hewlett and Packard. This was not the H-P way. H-P sided with Kaiser. Ron was told that in similar situations, it had been the spouse that provided care. They shut the door in his face. The image of H-P as a big family, loyal to their employees, headed by founders who cared, did not apply in this precedent-setting situation. It would cost the company too much money. Like most companies, H-P’s eye was on the bottom line.
We looked at the possibilities of Medi-Cal, Federal disability, or California state disability. None of them applied. Medi-Cal allowed recipients to keep their homes, but not have an income over $12,000 a year, a figure too low to pay the mortgage. Ron didn’t qualify for disability because he worked half time at home and therefore wasn’t considered disabled.
With Bob’s help, I took on the battle with Children’s Hospital at Stanford my employer who dropped my contract due to Ron's need for home care and Blue Cross my insurer which had been providing us with one shift of home care a day. After months of calls, letters, and meetings, Ron was awarded two hundred more days of care. It was worth every minute of anxiety it took to make the system provide what we deserved, but it was now clear that we would have to continue to fight for Ron’s care after those two hundred days were over.
We increased our fundraising efforts and sent letters asking for money to a wider circle of people. We raised money, but this also raised our anxiety. Ron and I were embarrassed about asking for money. My parents shared our discomfort and discouraged us from going ahead with a wider campaign. They gave us the money they could, but my mother was ill, and they had limited resources. They were unwilling to ask people they knew for money. They believed that such a request would be humiliating. Once again, we faced the question of our responsibility as a family. Ron had a catastrophic illness, and the medical establishment believed that putting him on a ventilator was a viable choice. We had chosen the ventilator, but we didn’t have the means to sustain him at home without the help of the wider community. We wondered what rules applied in this situation. Should we sell our house? Should I quit my job? Should the girls come home from college? Should we ask people of wealth to help us? Should Ron be institutionalized? Should he turn off the ventilator before he was ready? Everyone we knew, other than my parents, put out the word and asked friends and family to contribute to the Trust. People wanted to help and over the years we raised more than $100,000.
When there were only a few months left before we would lose the third shift of nursing and we were scrambling for money, Bob Lubin decided to sue Kaiser, Ron's health care provider who at the time were paying for two shifts of nursing a day. As an HMO, the Federal HMO Act regulated Kaiser. Unlike other laws, the HMO Act was clear. It stated that HMOs were required to provide medically necessary treatment without regard to time or cost. Kaiser doctors had prescribed twenty-four-hour skilled nursing care for Ron. How could they refuse to provide it? All the doctors involved agreed that home care was the treatment of choice. Due to Ron’s condition, he was at a high risk for pneumonia (the only two times he got pneumonia were when he was hospitalized). Hospitalization would put his life at risk. Kaiser argued that the benefit was twenty-four-hour hospitalization. Home care was only available as an alternative to hospitalization. If the family wanted the patient at home, it was up to the family to provide the additional eight hours of care.
In addition to the Federal HMO Act, there was a California law that stated that patients should be put in the least restrictive environments available. Clearly home care was less restrictive than hospitalization.
Bob filed a class action suit in federal court in California on March 20, 1990. On August 24, 1990, with Judge J. Vukasin Jr. presiding, the case was dismissed on the basis that Ron did not have a private right of action to enforce “the basic health services” provision of the federal HMO Act, and that only the federal government had that right. But the game was not over yet.
In Washington, a non-profit agency, the Center for Health Care Law, headed by Jim Murray and William Dombi, had been trying to get home care for other patients in other parts of the country. When they heard about our case, they offered to get involved. They recommended that Bob file a grievance with the federal government, and we ended up suing the government to force it to enforce its own regulations. The government finally agreed with us in March of 1992 and directed Kaiser and all other HMOs that they must provide twenty-four-hour skilled nursing care if that were medically necessary, regardless of cost. We had won the battle but not the war. The federal department that managed the HMOs now had to make Kaiser comply, but in Ron’s case they agreed with Kaiser’s claim that the original prescription was not for home care, but for twenty-four-hour skilled nursing care, and that Kaiser had been willing to offer that in an institutional setting.
As is often the case, each legal decision only makes a small change. It was gratifying to know that, due to our suit, federally funded HMOs were fully informed of their responsibility for home care under the law. Kaiser responded by setting up a home care assessment system that included the option of twenty-four-hour home care. It was devastating, however, to realize that this decision might not help Ron.
Now that we had the federal regulation to stand on, we filed a new suit against Kaiser in California state court on May 4, 1992. The doctor who had written the original prescription for twenty-four-hour care was no longer working for Kaiser. We tracked her down in Seattle. She wouldn’t testify for us, but she would write an affidavit stating that her prescription had been for twenty-four-hour home care. We were back in court with a much stronger case, but the legal process was not fast enough. The progression of Ron’s disease would not wait for the legal system to respond.
While we were fighting Kaiser in court, Ron began to think about turning off his ventilator. His health was deteriorating fast, and only I and one other nurse could understand him. In September of 1992, with me as translator, he began a series of conversations with family, friends, and doctors that led to turning off his ventilator on January 13, 1993.
Months after Ron’s death, Kaiser offered to settle with us out of court. Bob Lubin wanted me to continue the battle in court, but I was exhausted, and I decided to stop the fight and get on with my life. Kaiser paid us $30,000, which I split with Bob. The amount did not come close to our expenses, but it was an acknowledgement of their responsibility.
I have been told that the case has had lasting effects on Kaiser’s care of patients with catastrophic illness. It set a precedent in federal court on which other cases have been built. Over the years, I have worked with many families fighting for health care. I coach them in how to stand up for their rights. When I think about those hard years, it is our fight with Kaiser that I am most proud of. It is Bob Lubin and the members of the Pulleyblank Trust to whom I am most grateful. The disease won out, but our efforts kept Ron at home until the end and changed home health care for many others.
The Teachers I interviewed took me back to my ability to act even when I feel that all the odds are against me. Teachers come into our lives in many ways. Sometimes we read about a famous person who inspires us. Or perhaps a circumstance in our life pulls us out of ourselves toward others with a similar plight. Listening to these stories of resistance is only the first step however. We have to use those stories for building our own platforms for action.
As we continued to try to find a way to keep my husband Ron at home on a ventilator complex legal battles began. A friend introduced me to Bob Lubin an attorney who became our champion, pro bono, for four years. Working with our friends in the Pulleyblank Trust, we developed strategies for addressing the inequities in home care and raised money to keep Ron at home until our legal battles were won.
Ron wrote directly to Mr. Hewlettt and Mr. Packard, the founders of H-P. Neither responded. Through Ron’s human resources representative, Bob requested nursing care during working hours as a “work force accommodation for the handicapped,” a benefit written into the Disabilities Act. This was considered by H-P as an excessive accommodation, even though Ron was still an active member of his team at H-P Labs. H-P also briefly considered providing exceptional health benefits for Ron but decided against it. Ron had a final and unfriendly meeting with a corporate vice president. He was coldly rebuked for having gone over their heads and written directly to Hewlett and Packard. This was not the H-P way. H-P sided with Kaiser. Ron was told that in similar situations, it had been the spouse that provided care. They shut the door in his face. The image of H-P as a big family, loyal to their employees, headed by founders who cared, did not apply in this precedent-setting situation. It would cost the company too much money. Like most companies, H-P’s eye was on the bottom line.
We looked at the possibilities of Medi-Cal, Federal disability, or California state disability. None of them applied. Medi-Cal allowed recipients to keep their homes, but not have an income over $12,000 a year, a figure too low to pay the mortgage. Ron didn’t qualify for disability because he worked half time at home and therefore wasn’t considered disabled.
With Bob’s help, I took on the battle with Children’s Hospital at Stanford my employer who dropped my contract due to Ron's need for home care and Blue Cross my insurer which had been providing us with one shift of home care a day. After months of calls, letters, and meetings, Ron was awarded two hundred more days of care. It was worth every minute of anxiety it took to make the system provide what we deserved, but it was now clear that we would have to continue to fight for Ron’s care after those two hundred days were over.
We increased our fundraising efforts and sent letters asking for money to a wider circle of people. We raised money, but this also raised our anxiety. Ron and I were embarrassed about asking for money. My parents shared our discomfort and discouraged us from going ahead with a wider campaign. They gave us the money they could, but my mother was ill, and they had limited resources. They were unwilling to ask people they knew for money. They believed that such a request would be humiliating. Once again, we faced the question of our responsibility as a family. Ron had a catastrophic illness, and the medical establishment believed that putting him on a ventilator was a viable choice. We had chosen the ventilator, but we didn’t have the means to sustain him at home without the help of the wider community. We wondered what rules applied in this situation. Should we sell our house? Should I quit my job? Should the girls come home from college? Should we ask people of wealth to help us? Should Ron be institutionalized? Should he turn off the ventilator before he was ready? Everyone we knew, other than my parents, put out the word and asked friends and family to contribute to the Trust. People wanted to help and over the years we raised more than $100,000.
When there were only a few months left before we would lose the third shift of nursing and we were scrambling for money, Bob Lubin decided to sue Kaiser, Ron's health care provider who at the time were paying for two shifts of nursing a day. As an HMO, the Federal HMO Act regulated Kaiser. Unlike other laws, the HMO Act was clear. It stated that HMOs were required to provide medically necessary treatment without regard to time or cost. Kaiser doctors had prescribed twenty-four-hour skilled nursing care for Ron. How could they refuse to provide it? All the doctors involved agreed that home care was the treatment of choice. Due to Ron’s condition, he was at a high risk for pneumonia (the only two times he got pneumonia were when he was hospitalized). Hospitalization would put his life at risk. Kaiser argued that the benefit was twenty-four-hour hospitalization. Home care was only available as an alternative to hospitalization. If the family wanted the patient at home, it was up to the family to provide the additional eight hours of care.
In addition to the Federal HMO Act, there was a California law that stated that patients should be put in the least restrictive environments available. Clearly home care was less restrictive than hospitalization.
Bob filed a class action suit in federal court in California on March 20, 1990. On August 24, 1990, with Judge J. Vukasin Jr. presiding, the case was dismissed on the basis that Ron did not have a private right of action to enforce “the basic health services” provision of the federal HMO Act, and that only the federal government had that right. But the game was not over yet.
In Washington, a non-profit agency, the Center for Health Care Law, headed by Jim Murray and William Dombi, had been trying to get home care for other patients in other parts of the country. When they heard about our case, they offered to get involved. They recommended that Bob file a grievance with the federal government, and we ended up suing the government to force it to enforce its own regulations. The government finally agreed with us in March of 1992 and directed Kaiser and all other HMOs that they must provide twenty-four-hour skilled nursing care if that were medically necessary, regardless of cost. We had won the battle but not the war. The federal department that managed the HMOs now had to make Kaiser comply, but in Ron’s case they agreed with Kaiser’s claim that the original prescription was not for home care, but for twenty-four-hour skilled nursing care, and that Kaiser had been willing to offer that in an institutional setting.
As is often the case, each legal decision only makes a small change. It was gratifying to know that, due to our suit, federally funded HMOs were fully informed of their responsibility for home care under the law. Kaiser responded by setting up a home care assessment system that included the option of twenty-four-hour home care. It was devastating, however, to realize that this decision might not help Ron.
Now that we had the federal regulation to stand on, we filed a new suit against Kaiser in California state court on May 4, 1992. The doctor who had written the original prescription for twenty-four-hour care was no longer working for Kaiser. We tracked her down in Seattle. She wouldn’t testify for us, but she would write an affidavit stating that her prescription had been for twenty-four-hour home care. We were back in court with a much stronger case, but the legal process was not fast enough. The progression of Ron’s disease would not wait for the legal system to respond.
While we were fighting Kaiser in court, Ron began to think about turning off his ventilator. His health was deteriorating fast, and only I and one other nurse could understand him. In September of 1992, with me as translator, he began a series of conversations with family, friends, and doctors that led to turning off his ventilator on January 13, 1993.
Months after Ron’s death, Kaiser offered to settle with us out of court. Bob Lubin wanted me to continue the battle in court, but I was exhausted, and I decided to stop the fight and get on with my life. Kaiser paid us $30,000, which I split with Bob. The amount did not come close to our expenses, but it was an acknowledgement of their responsibility.
I have been told that the case has had lasting effects on Kaiser’s care of patients with catastrophic illness. It set a precedent in federal court on which other cases have been built. Over the years, I have worked with many families fighting for health care. I coach them in how to stand up for their rights. When I think about those hard years, it is our fight with Kaiser that I am most proud of. It is Bob Lubin and the members of the Pulleyblank Trust to whom I am most grateful. The disease won out, but our efforts kept Ron at home until the end and changed home health care for many others.
The Teachers I interviewed took me back to my ability to act even when I feel that all the odds are against me. Teachers come into our lives in many ways. Sometimes we read about a famous person who inspires us. Or perhaps a circumstance in our life pulls us out of ourselves toward others with a similar plight. Listening to these stories of resistance is only the first step however. We have to use those stories for building our own platforms for action.
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