A Community of Joy : At the Jeffrey Foundation for Disabled Kids, the Sounds You Hear Are Singing, Laughing and Squealing

Jeffrey was 2 weeks old when he was adopted, 2 years old when he was found to have muscular dystrophy and other disabilities, 7 when he went into a wheelchair and 16 when he died, in 1980.

The numbers tell nothing of the joy and fulfillment Jeffrey brought into his adoptive mother’s life--or the love and sense of worth she brought to his. The richness of their time together survives in the Jeffrey Foundation, a day-care center founded and named by Alyce Morris to honor her son.

The beaming kids, from toddlers to teens, who are helped out of vans at the Los Angeles facility each morning have varying degrees of multiple disabilities--autism, Down’s syndrome, mental retardation, muscular dystrophy and cerebral palsy.

They enter the West Washington Boulevard center, where the drab gray exterior, high chain-link fence and bleak industrial neighborhood give no hint to what’s inside. But Morris has little patience for those who judge the surface before examining the depths. “Come inside,” she tells a visitor, “and see how it is.”

Morris and guest sail from room to sun-filled room, absorbing the almost palpable aura of joy. Small groups of closely monitored children sing, act, dance, play with blocks and puzzles, do arts and crafts. In one room, kids squeal delightedly as they jump rope, watched by a smiling girl in a wheelchair--one arm raised in a speechless version of a cheer. “She can’t move her arms,” a counselor says with a wink, observing the allegedly immobile child.

Down a hall, the open door of a large, sky-blue bathroom reveals a 3-year-old smiling smugly as a counselor applauds his mastery of the potty.

The ratio of counselors to children is 1 to 4. The building, purchased by Morris and opened four years ago, is not yet fully furnished (she depends on donations for much of that)--but even the unused corners are spotless. And not a child among the 60 present on this particular afternoon is sitting sadly alone or disengaged from the activity.

“I had four job offers, but after I saw what happens here, none of the others could compare,” says Kirsten Ives, assistant director since September, 1993. A specialist in education for the developmentally disabled, Ives says the center is “not a school, but it is run like one. These children are helped to live up to their potential. I leave here every night knowing I accomplished something wonderful by just being part of it. This place is built on a rock of love.”

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Morris, whose handsome son Jeffrey appears in photos on many of the center’s walls, is seasoned enough by now to know that love does not conquer all.

“One goal is to bring the higher functioning children to a level where they can be included in mainstream facilities in the community,” she says. “But no matter how we try, that’s not always possible for kids with very severe problems. Our feeling is that those kids deserve to be happy, too, to live their lives fully and not just watch others from the sidelines. We do that for them here.”

Things have improved since the 1960s, when Jeffrey was found to be slightly retarded and to have muscular dystrophy. Morris and her husband were told that they should institutionalize him.

“No way,” she said as she began the rounds of doctors to find a treatment or cure. The depressing results made her even more determined to give her son a full life--a commitment so total that her marriage fell apart. She divorced and moved with 5-year-old Jeffrey from Chicago to Los Angeles, where she’d been an actress and model before her marriage.

She needed to work full-time, but there was no day care for children like Jeffrey. Whenever she tried to leave him somewhere, she says, he came home depressed, physically hurt or both.

Morris says the people who offered day care may have meant well, but they didn’t have the energy, knowledge or desire to care for a multiple-handicapped child. They didn’t care that Jeffrey was a kind, loving, sensitive child with a great sense of humor and compassion for others. They ignored him, even left him by himself. Worse yet, they did not meet his most basic needs or learn to interpret his simple requests. And so-called normal children were often cruel to him.

Morris says she went on welfare so she could take care of Jeffrey herself and seek out parents of similarly challenged children near Santa Monica, where she then lived.

She soon organized a group so that Jeffrey would have friends with whom to do arts and crafts, play games and take trips. She wanted him and others like him to experience the beach, amusement parks, concerts and playgrounds--in other words, the joys of childhood she knew they so richly deserved.

Morris’ organization, begun more than two decades ago, has been expanded and transformed many times in attempts to provide help for children like Jeffrey, who became progressively weaker and who learned at age 8, while watching a Jerry Lewis telethon on TV, that he might soon die of his illness.

“I told him we’re all going to die,” she recalls, “and we have to live as fully as we can each day.”

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The facility is Morris’ dream come true. Staffed by about 35 teachers and aides, it offers full-day camp in summer and specially designed year-round programs for different age groups, from 18 months to 18 years.

There are morning and afternoon programs for babies and preschoolers, and after-school programs for older children. Soon to come: infant care that stresses early intervention techniques to help minimize the effects of disabling conditions.

Year-round care would total about $20,000 per child, Morris says, but there is no charge to the parents of children who attend the day-care programs. The private, not-for-profit foundation relies on a variety of sources for funds, including individual and corporate donations, charitable trusts and foundations, the California Department of Developmental Services, the California Department of Education and the Los Angeles City Community Development Department.

There are about 400,000 disabled children in the state’s public schools, according to the California Department of Education. Of those, about 6,715 have multiple handicaps--defined as having two or more disabling conditions, such as mental retardation and muscular dystrophy.

Many of these students, ages 5 to 22, live in Los Angeles County, and the Jeffrey Foundation cares for about 80 of them, with room for expansion. Most others are “mainstreamed” into day care with non-handicapped children, or privately cared for in their own or other people’s homes, Morris says.

Many who attend the Jeffrey Foundation are from low-income families, referred through one of the regional centers of the California Department of Developmental Services. Regional Center officials, for the most part, believe that even multiply handicapped children can be included in regular after-school programs at public schools, the YMCA and the like.

“ Inclusion is the big word these days. We try as much as possible” to include the disabled child with non-handicapped kids, says Valerie Lattanza, intake counselor at Westside Regional Center. “To be honest, there aren’t many options other than that.

“But sometimes,” she adds, “there’s just nowhere for a child to be included.”

Sakina Nawab, 14, and her brother Ali, 10, fell into that category. For them, the Jeffrey Foundation has meant friends and fun. For their mother, Shahina, it has meant salvation of a sort.

“Both my kids were born normal,” Nawab says. “One fine morning, when Sakina was 3, she awoke with a limp.”

The limp got worse, the weakness spread, and over the next dozen years of running to doctors on three continents, she says, her daughter deteriorated to the point where she is now in a wheelchair and must be fed, dressed and taken to the bathroom. She no longer speaks.

“Then when our son was 5, he, too, awoke with a limp,” Nawab continues in her even tone. “And the same thing is happening to him.”

No diagnosis has been made for either child. And Nawab says that by now, even if doctors could figure out what is wrong, there would be little hope of reversing the physical damage done.

She has stayed at home--loving and caring for them and watching them become more disabled--without a significant break or a chance to go to work. Both children are now in special education programs at Los Angeles public schools, she says, but she could find no after-school care to which she would entrust “two of the world’s most precious kids.”

“God has gifted me with the Jeffrey Foundation,” says Nawab, who was referred there by the Westside Regional Center. “My kids are safe, happy and cared for by people who understand. And I have taken a job at a bank.”

Most families with multiply handicapped children aren’t as fortunate. “Programs designed to meet their special needs and to enhance their enjoyment of life are very scarce,” says an official at one of the city’s regional centers.

So Morris keeps at it. Last month, she went to Chicago to open a branch of the Jeffrey Foundation. Jeffrey’s adoptive father, whom she divorced long ago, will be on its board of directors. “He understands what has to be done for these kids,” she says, “and I think he’s proud of me.”