Enabling the Disabled : McIntosh Center Lets Handicapped Take Control of Their Lives

There is much about Dave Shaw--a restless, engaging and active young man--that is so typical, so normal.

He drives daily to his full-time classes at Cypress College, plays basketball two nights a week, goes bowling and is an avid baseball fan.

In his apartment in the Carbon Creek Shores complex in Anaheim, souvenirs from his Hawaiian trip last summer cover the wall, next to autographed pictures of Reggie Jackson, Steve Garvey and Pete Rose.

He cooks for himself, but he prefers takeouts such as pizza. And between homework stints, he will view a Hollywood thriller or comedy from his videocassette collection or browse through the latest sports magazines.

But this image of conventionality goes only so far.

Shaw, 25, is severely disabled, a victim of cerebral palsy. His car has special hand controls. He plays basketball from a wheelchair. When he bowls, he has to crawl to the ball line.

And Carbon Creek Shores, a 40-unit complex opened 2 years ago by the Orange County-based Dayle McIntosh Center for the Disabled, is designed especially for the handicapped--with wheelchair ramps, extra-wide aisles and doors, roll-in showers, Braille-marked controls and adjustable kitchen counters.

The other adult tenants in the federally subsidized, low-rent complex also are severely disabled, including those who have hearing and visual impairments and neuromuscular afflictions.

“But really, we’re pretty lucky. This place is not only affordable but user-friendly,” says Shaw, who plans to major in broadcast communications at Cal State Fullerton. “We can prove to other people--and to ourselves--that, yes, we can take care of ourselves, that you don’t have to keep us in back rooms and institutions.”

Then, his manner turns solemn. “If you know how it is out there for people with disabilities, you’ll know what I mean. You don’t have to ask.”

More than ever, say McIntosh Center leaders, self-sufficiency and self-advocacy are needed to integrate the physically and mentally handicapped into the mainstream community.

If the disabled are to be “truly mainstreamed, we must be given the chance to show we can take charge of our own lives,” says Greg Winterbottom, a paraplegic and founding board chairman of the McIntosh Center.

This means, Winterbottom says, “housing and jobs that allow us the fullest possible independence and that test our fullest capabilities, no matter how seemingly insurmountable the disabilities.”

This also means, says Winterbottom, who is a public administrator and management consultant, “taking charge of protecting our own rights as individuals. We have to break silence. We have to challenge and speak out.”

And this, he says, is where the McIntosh Center comes in.

Founded 11 years ago, the Dayle McIntosh Center for the Disabled is still the only operation of its kind in Orange County. Center officials estimate that there are 370,000 physically and mentally handicapped persons in the county.

The Anaheim center provides traditional programs such as family, job and school counseling; a registry of attendant care; workshops on homemaking, shopping and dealing with transportation, and referrals to services offered by other private and public agencies.

But it also is viewed as a cutting-edge organization, a major departure from the usual low-profile private agencies that serve the physically and mentally handicapped.

More than any other local agency for the disabled, the McIntosh Center deals in direct advocacy.

Most of its 16-member board of directors and 35-member staff are disabled, including executive director Brenda Premo, who is an albino and has only 10% vision. Premo is a member of the National Council on the Handicapped, an advocacy and review panel.

The staff at the McIntosh Center keeps an eye on public facilities to make sure that they are complying with federal and state laws that require ramps, parking spaces and other amenities for the handicapped. The center also offers workshops for the handicapped on their rights regarding housing and jobs, and it provides staff mediators if clients want to appeal disability-benefits cuts and other actions by public agencies.

At the same time, the organization continues to press for more affordable and accessible rental housing for the handicapped. The center in September received a $2.5-million federal grant to build its second 40-unit, low-rent apartment complex, and a site in Fountain Valley is being sought.

The McIntosh Center is one of 24 advocacy-oriented, nonprofit “independent living centers” for the handicapped in California backed by state and federal monies, as well as local public and private funding.

Centers in Los Angeles County and the San Francisco Bay Area have a reputation for pickets and sit-ins but, says Premo, whose $1-million-a-year operation in Anaheim now serves 1,500 disabled persons: “In Orange County, you don’t get militant. It doesn’t work here. You don’t confront--you deal in friendly persuasion.”

“Believe me,” she says, “we’re very assertive, very persistent. We’ve made significant progress. But there’s still far too much to overcome.”

Consider this incident in a local hospital emergency room, as reported by the McIntosh staff:

A woman, hemorrhaging from a recent operation, was greatly agitated, her speech was incoherent and she was making wild gestures with her arms. One of the nurses, believing the woman was mentally disturbed, had her physically restrained.

Later, a sign-language interpreter from McIntosh--notified by the patient before leaving her home for the hospital--arrived and was able to resolve the situation. The woman was deaf, unable to speak clearly and was attempting to use sign language with the nurses.

This case is cited as typical for Commend, the McIntosh Center’s “Communication Medical Emergency Network for the Deaf,” started in 1980 as the first such emergency-room project in the state, and a dramatic example of the vast communication schisms affecting the handicapped.

Initially, there was “considerable resistance” from many hospitals, says Commend coordinator Maureen Commodore. Some didn’t want the interpreter--”an extra person”--in emergency or surgery at all. Others, she says, felt they “could get by just speaking slowly or passing notes to the patient.”

But the number of hospitals accepting the project has grown, and 20 complexes in Orange County now contract with Commend. About 100 cases are served in a year, ranging from possible heart attacks and attempted suicides to mothers giving birth.

The most massive resistance to a McIntosh project was a classic case of community uproar.

This occurred in 1983, when the center had settled on a Southern California Edison easement site in Westminster to build its first federally backed, low-rent apartment complex. The area includes single-family homes, as well as stores and offices.

When city hearings were held, scores of residents opposed what they said was an improper use for that area.

“It’s the same old story--like when people line up against board-and-care homes for the developmentally disabled,” Winterbottom says. “Only this time, people were saying they didn’t want any cripples in the neighborhood.”

A year later, the center found another site--a county parcel in an all-apartment sector in Anaheim next to a flood-control channel and the Riverside Freeway. There was no opposition.

When the $2.9-million, 40-unit Carbon Creek Shores complex, whose underwriting included county and city monies, opened in October, 1986, it was the first such all-disabled complex in the county.

About 300 people are on the ever-growing waiting list for apartments in the complex, and the reasons are all too clear.

All current Carbon Creek Shores residents live on federal disability allotments. They pay 30% of their monthly income for their subsidized units, which generally means rents from $135 to $220.

There are only a scattering of federally subsidized rental units open to the disabled elsewhere in the county, and there is only one other all-disabled, low-rent complex--Casas del Rio in Orange--which was opened last year by the Rehabilitation Institute of Southern California.

Otherwise, there is little choice. Low-income handicapped people have to stay with their relatives or, if they want to live on their own, be subjected to the regular market, where rents consume most or all of their monthly incomes.

According to a recent McIntosh Center survey, rents for disabled-accessible units on the regular market can range from $525 to $695 for a one-bedroom unit and $650 to $850 for two-bedroom units.

“It’s a no-win situation if you’re both disabled and low income,” says housing specialist Paula Margeson, McIntosh’s director of development.

For example, Rodney and Louanna Powell, who are mentally disabled, pay only $211 a month for their three-bedroom unit at Carbon Creek Shores.

But in 1985, they were living in apartments or from week to week in motels, paying rents that left them little for food and other essentials.

Finally, Rodney, who also suffers from epileptic seizures, lost his job at a fast-food restaurant, and Louanna, pregnant with their second child, was laid off from her assembler job.

“We were really lost. We didn’t know what to do, where to go,” says Rodney, 35.

Early in 1986, they found refuge in Project HEARTH, the emergency shelter that the McIntosh Center operates for the disabled in a small Garden Grove house.

HEARTH, which usually houses six adults but also occasionally takes in families, provides food and lodging for up to 30 days. Residents also get counseling and other support services at the shelter or from other agencies.

Later in 1986, the Powells were picked to occupy one of the 14 family units at Carbon Creek Shores. “We have friends here and lots of potluck get-togethers,” says Louanna, 31. “We have a home now, a real place to stay. We’re not scared anymore.”

For Sharon Burton, 40, who is confined to a wheelchair by multiple sclerosis, Carbon Creek Shores is the second such subsidized home.

Four years ago, she lived in another federally assisted complex in Chicago. Then she moved to Texas and Southern California and lived with relatives or “over my head” in regular apartment complexes.

Although she is unable to work, Burton dines out and attends plays, concerts and movies as often as she can.

“People seem to be changing. They don’t seem to stare at us as much as before,” she says. “People want to know more about us now. I mean, we’re on television shows, even sitcoms.

“I hope it’s because they see us as persons first, our disabilities second. It’s what we can do, not what we can’t.”

To Burton, Carbon Creek Shores is a blessing. “It makes me feel that I’m on my own. It gives me a kind of freedom and dignity--not pity.”

The memory of Dayle McIntosh--for whom the center is named--has not faded. She is, apparently, as much a role model today as she was 11 years ago.

Extremely fragile and tiny, she was the victim of a wasting, neuromuscular disease that kept her confined to a wheelchair.

Although she spent years in classes for the handicapped in the public schools, she was accepted for regular courses at Santa Monica City College, then UCLA and Cal State Long Beach.

By the time she had reached her late 20s, despite the severely limited use of her hands, McIntosh, who had moved from Los Angeles County to Huntington Beach, became an accomplished technical writer and computer programmer.

“We knew (that) she was very bright and gifted and that she had an incredibly positive attitude,” recalls her mother, Irene. “But she always amazed us with what she could do, how far she could go.”

In 1976, McIntosh became part of the movement to establish an “independent living center” in Orange County. And she and Premo, another Cal State Long Beach graduate, joined the county task force that paved the way for the advocacy and service facility.

But McIntosh, weakened by a cold that developed into pneumonia, died in August, 1977. She was 35.

“We always felt Dayle had a full life--richer and more productive than that of a lot of other people,” says her father, Fred, a retired aerospace engineer. “Her life had quality and meaning.”

Three months after her death, the center, which had received a $52,000 revenue-sharing grant from the county, opened in a tiny Garden Grove office manned by Premo and two staff aides.

There was no question about what to name the new center.