Home Offers Refuge to the Brain-Injured

When Ann MacLean received a phone call at her home in Australia seven years ago, she had no way of knowing that it would change her life--and her son’s life--forever. Her 30-year-old son, Martin, had been hit head-on by a drunk driver while on his way to a business appointment in Malibu. Doctors told her they did not expect him to live through the night.

The Ireland-born widow and mother of seven got on the first available plane to Los Angeles. MacLean spent the next four months at the side of her son’s hospital bed, where he lay in a coma. Except for a brief return to Australia to sell her house and the nursing home she owned, she has remained with him ever since.

Like an increasing number of brain-injury victims, MacLean’s son survived. His accident, however, left him with symptoms typical of head injuries. Unable to speak, feed or clothe himself, Martin does not recognize his mother nor any of his six brothers who have since moved to the United States.

Coping with the reality of her son’s irreversible condition was hard enough. But finding appropriate long-term care for him, she says, was even harder.

“Brain-injured people may be intellectually impaired, but they’re not mentally retarded,” MacLean said in a rolling, Irish accent. “They may have emotional problems, but they’re not insane. And they may need care like the elderly, but they’re certainly not old. Putting Martin in one of those kinds of facilities wasn’t an option.”

Today, MacLean travels each morning from her home in West Hollywood to Sorbonne House in Sylmar, a nonprofit, residential home for brain-injured men that she and several other parents established in 1983. MacLean, who works as house mother for her son and four other brain-injured men, said the parents first met at a support group seven years ago. The idea for creating a residential home came out of anger and frustration at the realization that there was literally nowhere else their children could go.

According to the Long Beach-based Southern California Head Injury Foundation (SCHIF), a local chapter of the National Head Injury Foundation, Sorbonne House is the first of its kind in Southern California.

“There are a number of convalescent-type homes that care for the head-injured, but Sorbonne House is unique in that the parents formed the board of directors and do all of the fund raising, “ said SCHIF founding president Pat Occleschaw. “There are other groups that want to do the same thing, but so far they haven’t opened them up because there’s no funding.”

Sorbonne House’s fund-raising chairman, Shirley Weisberg, whose 39-year-old son was injured in an automobile accident seven years ago, recalled the panic she felt at being told her son would be discharged from a hospital.

“I used to hide from the social workers” there, she said. “He was a 32-year-old with a 3-year-old’s mind, and couldn’t even sit up. Once they no longer need the acute care, they say it’s time for them to go. But where?”

To their dismay, many parents in MacLean’s and Weisberg’s position discovered that, in many cases, the only answer was home.

“Long-term care for head-injury victims hasn’t kept pace with medical technology’s ability to save them,” Occleschaw said. Twenty years ago, she said, 90% of patients with severe head injuries died. Now, modern emergency-room and intensive-care technologies enable 70,000 of the 170,000 Americans who suffer head injuries each year to survive.

Since the average age for head-injury victims is between 18 and 26, Occleschaw said, many parents are older and cannot provide the necessary care for their permanently disabled children. As a result, she said, “Many head-injury victims end up in nursing homes, convalescent homes or mental institutions, where they really don’t belong.” A growing number of nursing homes, she added, no longer accept patients with head injuries.

Wanting more for their children than what many considered “warehousing,” MacLean and nine other parents who met at a support group at Northridge Hospital in 1980 decided to take matters into their own hands.

Out of that group was born Project Headway, now an arm of the nonprofit California Head Injury Rehabilitation Center Inc. Three years later, after raising $25,000 in private donations, they located an empty house on Sorbonne Street that formerly had been rented by the United Cerebral Palsy foundation.

Nestled on a quiet cul-de-sac in Sylmar, against the backdrop of the mountains, Sorbonne House looks no different from the homes beside it or across the street. The four-bedroom, one-story house has a backyard, deck and Jacuzzi, a large kitchen and dining area, and a family dog that at Christmas gave birth to a litter of eight. The garage is filled with exercise bicycles and home gym equipment; the floor is padded for regular physical-therapy sessions.

Every Thursday, weather permitting, the men are driven to a nearby riding stable that donates half-hour, therapeutic riding sessions. On weekends, parents arrive to take their sons to a nearby restaurant for lunch, or to play video games in the living room. Three times a week, a speech therapist comes to the house to work with the men in rebuilding their often-destroyed ability to communicate.

Speech therapy and several other types of rehabilitative services that the parents believe are essential for their children are not considered in many cases to be medically necessary by Medi-Cal. One parent was told that as long as her son could make his needs known, he did not require further speech therapy.

Finding funding to keep the house on steady financial ground, MacLean said, is a constant struggle.

“Each month, our expenses for round-the-clock care, food, entertainment, mortgage payments and transportation run about $10,000,” she said. Social Security, Medi-Cal and Medicare benefits, she added, cover less than two-thirds of that amount. To raise the difference, Sorbonne House’s board of directors--made up of parents of the men in the house, as well as those of other brain-injured children waiting for similar care--put on garage sales, theater parties, golf tournaments, and “anything it takes,” she said.

MacLean pointed out that for many families of head-injury victims, financial debilitation frequently limits their options. If the victim is under 18 when injured, he is eligible for community programs for the developmentally disabled, which include vocational rehabilitation. If the victim is over 18 and has no private health insurance, he is usually eligible only for limited Social Security, Medi-Cal or Medicare benefits. Even if there is private health insurance, it often does not go far enough.

“A million-dollar policy may sound like a lot, but it doesn’t last long when you’re dealing with brain injuries,” said Pat Ames-Hughes, a single mother whose 18-year-old daughter attempted suicide at college last year and as a result became brain-injured. Four weeks later, her 12-year-old son shot and killed himself.

“I’ve been very fortunate to work for a company that’s been very supportive through everything, but in less than a year, Lara’s medical bills are already over $500,000,” she said.

Ames-Hughes and many other parents have found themselves in the emotionally draining situation of wanting to stay home to care for their children, yet needing to work to continue receiving medical benefits. “That’s why it’s doubly important to have a place like Sorbonne House for them to be, where you know they’re getting the therapy and care they need when you can’t be there,” she said.

In late February or early March of this year, Project Headway plans to open a similar home in Woodland Hills for women. Ames-Hughes says she feels confident it will be an environment where her daughter can make the most progress possible. In the meantime, Lara is cared for by United Cerebral Palsy.

Sorbonne House is now home to 36-year-old John James, an artist living in San Francisco when he was struck over the head and robbed six years ago. James spends a great deal of his time painting Van Gogh reproductions in the garage, which doubles as his studio. “Starry Night,” he says, will be his finest one yet.

“This one will take me a long time, but when I am done it will be mine,” he said slowly. “So don’t bother making me an offer.”

MacLean smiled softly with a touch of pride. They may be injured, but they are our children,” she said quietly. “We love them, so what else can we do?”