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Tom and Beverly Vais visit their son Bob who became brain-injured when a car struck him 20 years ago.
Photograph by Kathy De La Torre
Coming Home
For 20 years, local super-mom never gave up hope, help
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 eventually learned about Services for Brain Injured (SBI), and how SBI became one of two nonprofit agencies to benefit from this year's Homes for the Holidays, Summit League's annual fundraiser.
Beverly Vais began learning to be, in her own words, "a loudmouth," 20 years ago. It was then that Vais, a resident of Monte Sereno, found herself tearing down the street in her bare feet, with her bathrobe on. 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 in high school when he became one of the 2 million 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.
Tom, her husband, who was at that time the CEO of United Way of Santa Clara County--the nonprofit organization that raises funds for hundreds of human care services throughout the county--would discover that Santa Clara County had no appropriate services for their son.
After years of searching for appropriate 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 live.
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. The longer he was in a coma the worse the recovery prognosis. However, Beverly's determination took hold.
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. After three months in rehab, he was sent home.
He was still using a wheelchair and his speech was difficult to decipher. "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 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. Furthermore, the school had never dealt with a child with TBI before. Other program options came up and failed.
Beverly eventually 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.
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 and the school district would only pay until 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.
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. However, they were initially turned down.
"We needed a legal advocate," Beverly says, but they couldn't afford the lawyers. 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. By now, he Vaises were dealing with an abusive young man. Bob once 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
Bob Vais, 35, pours some cereal for breakfast. Vais sustained a serious brain injury 20 years ago. His parents, Tom and Beverly, were instrumental in establishing the non-profit agency Services for Brain-Injured, or SBI.
In South County there's a place called South Valley Ranch where Bob stayed for almost five years, until his constant 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.
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 some 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, the treatment for which would not help 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, some 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. Hence, 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 told 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.
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 explains. 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..."
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. 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.
A phone conversation between Vais and Lorna Panelli got the Panellis to the SBI fundraiser. Another 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.
Bob is 35 now, and only recently has his life stabilized. 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 and his volatile behavior to some degree. 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."
SBI can be contacted at 408.295.4119.
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Sunnyvale, California Since 1994
