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Making It: Tom and Beverly Vais visit their son Bob. When he was 14, Bob was hit by a car and became brain-injured.
Photograph by Kathy De La Torre
Loud Mouth
Beverly Vais wears the title like a badge. If she'd kept quiet, the lives of many brain-injured and their families would be very different.
By Sandy Sims
Beverly Vais isn't shy about picking up the phone and calling people she's never met. That's how she happened to meet Lorna Panelli. And that's how the Summit League, a local nonprofit that raises funds for other nonprofits, eventually learned about Services for Brain Injured (SBI) in the Rose Garden, and how SBI became one of two nonprofit agencies to benefit from this year's Homes for the Holidays, Summit League's annual fundraiser.
Vais and her husband, Tom, helped establish SBI after their own son was brain- injured, while Tom was the CEO of United Way of Santa Clara County. The two were unable to find services that could help them and their son cope with the dramatic changes his injuries created in their lives. Instead, they built the first local organization that addresses the needs of brain-damaged people. Beverly Vais has become a voice for other families affected by brain injuries.
The story of SBI and how Beverly Vais learned to be, by her own definition, "a loud mouth," starts 20 years ago. It was then that Vais, a resident of Monte Sereno, found herself racing down the street in her bare feet wearing her bathrobe. She'd just been told her 14-year-old son Bob had been hit by a car, and she was frantic.
When she found her son, he was lying unconscious in the street. The firefighters came, and finally the ambulance. Vais, still barefoot and in her robe, accompanied him to Good Samaritan Hospital. That was in May 1980.
Bob Vais was just finishing a successful freshman year at Los Gatos High School when he became one of the 2 to 6 million people a year in the United States who receive traumatic brain injuries (TBI). Bob fit the model of the largest group--a young male between the ages of 15 to 24. His injury was severe.
The events of that day catapulted Beverly and Tom Vais into a life that would profoundly affect their family and ultimately thousands of other families with a brain-injured loved one.
Although Tom was the CEO of United Way, the nonprofit organization that raises funds for hundreds of human-care services throughout the county, he would discover that Santa Clara County had no appropriate services for their son.
After years of searching for the correct help, the couple pooled resources. Tom's contacts through United Way and Beverly's fierce determination helped create Services for Brain Injured, the only nonprofit agency for brain-injured in Santa Clara County.
Beverly has received several awards for her work on behalf of the brain-injured, including the Junior League's Silver Bowl Award, the J.C. Penney Golden Rule Award, the Valley of Hearts Award through Parents Helping Parents, and in 1995, Beverly was nominated for the Santa Clara County Women of Achievement award.
On that spring day in 1980, the news at the hospital was grim. Bob had a closed head injury. "It never cracked open," Beverly says. But doctors thought his brain stem was injured. They told the Vaises their son would die. Twenty years ago severely brain-injured people usually did die; only 10 percent lived. Today, with advances in medical care, some 70 percent survive.
Later the Vaises learned that their son's injury was diffused over the whole brain, which, serious as it was, was actually a better sign. But Bob was in a coma for 2 1/2 months, and that was a bad sign. The longer he was in a coma the worse the recovery prognosis. However, Beverly's determination took hold.
She worked to stimulate Bob's senses. She held garlic and onions under his nose. She talked to him all day, and when she was gone she left a tape of the voices of Bob's sister and brother playing beside his ear. She bathed him, slowly rubbing his fingers and toes, talking to him the whole time.
She watched over her son's hospital care. When a nurse roughly twisted his arm, Beverly gently twisted the nurse's arm to make the point that the nurse was hurting him.
When she noticed her son's eyes tracking her around the room, she asked the doctor if that was a good sign. When he said "no," Beverly said, "I don't care what you say, I think it's a good sign." The doctor said her son would not recognize her if he woke up. "Oh, ye of little faith," she said to the doctor.
The worst parts of dealing with brain injury, Beverly says, are the professionals. "They take away your hope." She includes professional agencies that kept telling the Vaises their son didn't qualify for their services.
After one month at Good Samaritan, Bob was transferred to Kaiser Hospital and, after six weeks there, he came out of the coma. He was transferred to Kaiser's rehabilitation center in Vallejo where Beverly says her son got excellent care. He went in on a gurney and couldn't even turn over, she says. Their insurance only paid half the cost, and there were other expenses. Beverly moved into a motel in Vallejo, so she could feed Bob and speak for him. There he barely began to walk and talk and control his bladder.
Photograph by Kathy De La Torre
Rare Rest: Beverly Vais, whose determination over the past 20 years has done much to improve the lives of brain-injured people and their loved ones, visits with her son Bob on the front porch of his mobile home in Campbell
After three months in rehab, he was sent home.
He was still using a wheelchair and his speech was difficult to understand. "It took a year before I could understand him," Tom says.
"The devastation comes after rehab," Beverly says. "You're dropped like a hot potato." As a brain-injured person, what little services were available were too expensive. Valley Medical Center had a brain injury program, but the Vaises couldn't afford it. The program eventually closed.
The rehab program referred the Vaises to Chandler Tripp School, a public school for disabled children where he could get physical and speech therapy. But because of the way Bob's brain was injured in the frontal lobe, his behavior was uninhibited and inappropriate. If someone stared too long, he might hit them with his cane. He'd say whatever came into his head.
The other part of the problem was that Bob is smart, and according to Beverly many of the students at Tripp then were developmentally delayed. "For some reason brain-injured and developmentally delayed groups don't work well together. They clash," she says. More significant, the school had never dealt with a child with TBI before.
Bob was referred to Blackford High School's special education program, but they were not prepared to deal with TBI. Bob was sent to HOPE to work in the warehouse, but he was not developmentally delayed and didn't fit in there, either. Other options came up and failed.
If Bob was struggling, so was his mother. Beverly began staying in her bathrobe all day long. "I went into a depression," she says. "I prayed we'd both get hit by a car." But she says that might have left Tom with two to care for.
Beverly says she asked for a sign from God. "The weather was beautiful that day, and I recalled a book I read years ago, The Power of Positive Thinking." She kept on going. She spent hours on the phone, following any snippet of information. Someone left a Guideposts magazine article about a brain-injured boy. Beverly called the organization listed at the end of the article. She'd hear about the police helping someone with brain injury and she'd call police. She read about and attended any program she could find on the subject and sometime struck a nugget of valuable information.
Beverly attended a head injury conference at Valley Medical Center where she struck up a conversation with a woman carrying a big stack of papers. "I asked her what the papers were and found out they concerned an education code that required school districts to provide appropriate independent education programs (IEP) for their disabled students. "I took a bunch of those papers and handed them out to mothers," Beverly says.
She found that the district was required to pay for the education program appropriate to Bob's disability. But the program needed certain components, including physical, vocational, memory retention, behavior modification and, especially, an education component.
Beverly looked nationwide for such a place and found help at an Austin, Texas, campus of the nationally known Brown schools that offered comprehensive treatment for head-injured persons. The school district checked out the school and approved Bob's admission.
By that time, though, Bob was 21 1/2 years old and the school district would only pay till he was 22. After six months at Brown, Bob had to come home. The Vaises couldn't afford that kind of expensive help. But another resource came unexpectedly to the attention of the Vaises.
"Most of what I find out comes through chitchat," Beverly says. "That's why the support groups are so important."
Beverly was dancing at a United Way function with a director from another county when he mentioned financial aid through regional centers. Beverly got on the phone again and learned of the Lanterman Act.
The act provides state money for people whose "developmental disability" occurred before they turned 18 and falls into one of four categories: mental retardation, cerebral palsy, epilepsy and autism. The state money for those qualified is distributed through regional centers.
On the basis that their son's developmental disability occurred before he was 18, the Vaises applied to the San Andreas Center for financial help. They were turned down.
"We needed a legal advocate," Beverly says, but the lawyers were very expensive. "We couldn't afford it," she says. But one of the legal advocates in Sacramento offered the Vaises a template for a legal brief for their appeal. Tom adapted the brief to fit Bob's case, and Beverly wrote "A Day in the Life of Bob Vais" in diary form. They won their case, and Bob qualified for financial help.
"We got this help, but there was no place here for Bob to go," Beverly says. The Vaises were dealing with an abusive--by now--young man. He'd even punched a hole through the large window in their kitchen, cut himself and Beverly, too, as she rushed to stop his fall through the window. There were times he took off for downtown Los Gatos and they'd find him in the bars. He needed full-time supervision.
Photograph by Kathy De La Torre
Not Hampered: Although Bob Vais receives 24-hour assistance, he does many chores for himself, including his laundry.
In South County there's a place called South Valley Ranch where Bob stayed for almost five years until his running away got him sent back home. Beverly says South Valley Ranch has all the components for brain-injured help. It's very expensive but the Lanterman money paid for it. They found other places for him, too, but they never seemed to work out.
In the meantime, the Vaises were becoming experts on brain injury and on what help was or was not available in Santa Clara County.
What we need she told her husband is something like South County Ranch that is affordable, where brain-injured can get all the facets of help they need.
One day the Vaises were having lunch with George McCarthy, executive director of Community Companions, and the threesome decided to form a task force. They would find out just how big a problem brain injury was in Santa Clara County and what services were available. They would educate the county about brain injury.
The Vaises and McCarthy gathered a group of people from many county agencies, colleges, hospitals and included representatives from then state senators Alquist and McCorquodale's offices.
The study found that over a three-year period a total of 5,663 people in the county suffered traumatic brain injury. After acute care, services for these people were minimal, sometimes buried in programs meant to serve other needs. Brain-injured were often misdiagnosed as either mentally ill or as having learning disabilities, and the treatment for them would not help the brain-injured. Brain-injured often wound up homeless or in the homes of their families who were unable to help them. Housing was poor to nonexistent, and most of what was available was out of the county, hundreds of miles away. The task force found that the brain-injured need long-term, comprehensive help and none was available. Short-term programs had no place to send clients for long-term services.
The need for services was clear.
The task force began to educate the county. Beverly gave talks anywhere she could about the need for brain injury services. Because Beverly was so vocal, word was getting around, and she was getting calls from family members of brain-injured, asking her what they should do. She had some things to tell them. Be aggressive, she'd say. She could tell them about the responsibility of school districts, about the Lanterman Act and all the bits and pieces of information she'd dug up over time.
But not all caregivers have Beverly's energy. Beverly says it's the anger that fueled her. She'll call anyone for help.
Armed with task force information, the next step was providing services. With the idea of creating a South Valley Ranch-type of program here, the task force looked at two programs that had potential. Metropolitan Adult Education had a day program for brain injured that served as a respite for the families. The YMCA's Stepping Stones for Profit program offered some speech and other therapies, but it was expensive.
The end result was the creation in 1991 of a nonprofit agency called Services for Brain Injured (SBI). It would be affordable by offering services on a sliding scale.
"No one would be turned away," Beverly says.
Tom says SBI is the best of its kind in California. "It's not a cookies and milk kind of place," Tom says. The clients and the staff work hard to get as far ahead as they can.
What makes it different from other programs in Santa Clara County is that all the services are under one roof. The facility is at 667 Chapman St., San Jose, and it can now be found on the Internet at www.sbicares.org.
New clients are tested for functional capacities to determine the severity of their disabilities. They are tested for attention, concentration, receptiveness, expressive language, academic skills, and cognitive skills needed for work. They are tested for ability to handle responsibility, the ability to repeat and follow directions, the ability to complete tasks and the potential to learn new skills, and for their interpersonal skills and more.
These tests are critical because brain injury impairment is different for each individual. From test results, SBI creates an individual plan.
"You must never assume the client's limits." Christine Camara, executive director of SBI, says. She says the staff at SBI become anxious when doctors come in and say words like "he'll never be able to ... ."
Photograph by Kathy De La Torre
In Session: Mike Montague, left, attends a personal vocational social-adjustment class at the SBI center in San Jose.
Words of that kind would have kept 38-year-old Mike Montague, injured in a motorcycle accident seven years ago, living indefinitely in a convalescent hospital with elderly people. Montague remained for five years in SBI's day program, a basic skills component where the clients learn cooking, physical hygiene and grooming, crafts and more.
His anger and inappropriate behavior were a stumbling block to progressing into the independent living components. He could exasperate the staff. "If someone even dropped a pencil, I would freak out," Montague says. His behavior also kept him in the convalescent home.
However, because SBI bases its program around client needs, the agency brought in a clinical psychologist to help find strategies to work with Montague. In time, Montague was able to move into a residential care home.
"Moving out of the convalescent home was a catalyst for Mike," Camara says. He started at the independent living program and has moved through all eight components in one year. The department of rehabilitation has picked up his case, and in three months he will be looking for a job.
Montague wouldn't have moved from the basic program into living skills if it hadn't all been under one roof. "We can see what's going on and we can move them from place to place," Camara says.
Mike was seen as hopeless by his doctors.
Beverly explains that those who are older have more life experience to draw from and can recover more faculties. Likewise, Camara says clients who are very bright do better, too. "These people are used to deductive reasoning," Camara says.
The Vaises are now active in supporting SBI. They do an annual auction in March--the next is set for March 24, 2001. Beverly is always on the prowl for help for the program. She cornered Glen George at a Rotary Club dinner and talked him into donating a copy machine and SBI's first computer. Assemblyman Mike Honda donated money out of his own pocket. Hewlett Packard has donated much of SBI's technical equipment, and the list goes on.
One day, she read a story about California State Supreme Court Justice Edward Panelli and a decision that involved a speeding car and two brain-injured victims. Beverly thought Panelli might like to come to the SBI auction. Besides, she reasoned, it was about time the organization attracted a heavy hitter.
She looked in the phone book and found Panelli's phone number; she dialed and Lorna Panelli answered. That's how the Panellis ended up at the SBI fundraiser. A conversation between Lorna and an SBI board member led Lorna to suggest that SBI make a presentation to the Summit League, an organization to which she belonged. Beverly made the presentation, and this year, one of the two organizations that will benefit from Summit League's Homes for the Holidays will be SBI.
The San Andreas regional center for the Lanterman Act funds has made SBI one of its vendors for funds for brain-injured.
Bob is 35 now, and it's just recently that life is somewhat settled for him. He lives in a mobile home with 24-hour supervision, care provided for through the Lanterman Act. A psychologist was able to get the right combination of medications to quiet his seizures. He comes home weekends and calls daily, and Beverly has to educate his caregivers. Bob's difficulties are still very much a part of the Vaises' life. But it feels more manageable these days.
Beverly gets calls from family members of brain-injured people frequently. "I just tell them how we did it." She says. But because the Vaises have been pioneers, paving the way for brain injured in this valley, the newcomers will not have such a hard time finding help.
"When a person gets a head injury, it's traumatic, and it's forever," Beverly says. "I decided I would do whatever I could to make sure another mother would never have to go through the hell I went through."
Contact SBI at 408.295.4119.
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Willow Glen, California Since 1992
