The Painful Battle for Health Care : Many Find the System Has Shut Them Out of Programs They Have Been Counting On

SANTA ANA —  Wiping tears from her eyes, Shirley Gaw described the seven painful months she spent seeking government assistance for her disabled 64-year-old husband.

During those months, Jose Gaw, whose left arm and leg were paralyzed by strokes, remained bedridden and scarcely able to reach the bathroom without assistance.

Shirley Gaw held up four notebooks she filled with the names of health care workers, politicians and government officials she had called fruitlessly for help.

“No one understands the hell it’s been,” she said.

Although no accurate numbers are kept, health care workers say that Jose Gaw of Santa Ana is typical of the hundreds, perhaps thousands, of people countywide who have been shut out of programs designed to help the disabled and the elderly. Many people discover that when they need help the most, their disabilities are not considered severe enough to qualify for Medi-Cal or that they are too young to be eligible for programs such as Medicare.

Others simply get stuck in the tangled web of programs and paperwork.

Jose Gaw, a World War II veteran and retired auto mechanic, said the seven months he and his wife spent trying to get help was excruciating.

“It is hell to live this way,” he said.

Medi-Cal and other programs rejected him because the couple had more assets than the maximum allowed, the Gaws said. He was ineligible for Medicare because he had not been disabled long enough and was several months shy of age 65 when he could qualify for benefits.

At the time, the couple lived on $1,618 a month from Social Security and his state disability. But they spent $1,000 a month on an aide who would bathe Jose Gaw and provide other help. Once the state disability ran out last November, the couple’s income dropped to $774 a month and they could no longer afford the aide.

Lying on his bed, within arm’s reach of seven bottles of pills used to treat his hypertension and diabetes, Jose Gaw said that he spent months confined to his room, unable to bathe because no one was around who could help move him. His 66-year-old wife, who suffers from arthritis and has a ruptured disk in her back, can’t support him physically.

As the months passed, Jose Gaw’s weight dwindled from about 170 pounds to 140 pounds. While hope for quick aid faded, the couple grew despondent, often taking their frustrations out on each other during increasing arguments.

Shirley Gaw’s search yielded little but a growing list of people who said they would try to help. A few counselors suggested that the pair separate or divorce because that would help Jose Gaw’s eligibility for some programs. Shirley Gaw said she could not leave her husband.

The desperate months left Jose Gaw embittered against the health care system, which he said abandoned him: “Until I die or whatever, they could care less,” he said.

Confidentiality laws prohibit county officials from commenting on Jose Gaw’s case. However, they said that in general, the county does an excellent job of providing aid to those suffering financial or medical hardship.

Angelo Doti, director of financial assistance for the County Social Services Agency, admits the county’s system is complex. But he adds that it doesn’t get the respect it deserves.

“We are providing food and shelter and medical care for over 10% of the county’s population--who would otherwise be homeless or be forced to resort to some other means of surviving,” he said.

“I think we get a bad rap for trying to hide these programs, when in fact we’ve gone out of our way to reach the people who we feel are eligible for these programs,” he said.

Doti said the problem with the multitude of available programs is that they were created at different times for different reasons with little or no integration. “There’s no question about it that these programs are a patchwork,” he said.

As a result, people can feel that they’re getting the runaround, but “it isn’t because people are deliberately trying to do that,” Doti said. “It is just the system itself. That’s why we have been advocating Congress to stop and fix this because it’s insane.”

Tonya Nieman, a consultant and author of “Retire Right--Social Security Made Simple,” makes her living in Costa Mesa by helping people like the Gaws avoid, or extricate themselves from, problems with the health care system. She provides advice for about 500 clients annually, most of whom need help wading through the rules and paperwork.

Nieman said most people know the programs exist to help them, but because the system is fragmented, “they don’t know how to approach it. There’s no central information dispensation center.”

In 1989, Karyn Snell, 40, of Costa Mesa left the Medi-Cal office in tears. At the time, she discovered that her husband, Matthew, 35, was ineligible for benefits.

Eleven months after they were married, Matthew Snell had suffered a severe head injury in a motorcycle accident, which left him a quadriplegic and unable to communicate. Although he had health insurance, his company opposed paying the cost of all but his most basic care, saying that he did not show enough improvement to warrant continued therapy.

The couple lived on his state and work-related disability benefits, which totaled $1,400 a month. However, Matthew Snell did not receive physical rehabilitation therapy under those benefits. Only after being disabled for 2 1/2 years did he finally became eligible for Medicare, which included therapy.

Karen Snell, who had to quit her job to take care of her husband, said that while seeking Medi-Cal, in-home medical care and other support, “I was so discouraged because I had more doors slammed in my face. They said, ‘Oh, you have a sad story, but there’s nothing I can do to help you because you’re married,’ or ‘You have too much income.’ It breaks your heart. It tears you apart every day.”

For many people, the main obstacle to getting the benefits to which they are entitled is the complex and often frustrating maze of programs and paperwork. Forms as long as 20 pages are common, and few are standardized so that they can be transferred to another program or county.

Faye Blix, an Irvine attorney who specializes in law dealing with the elderly and disabled, said that as a result, many people seek out attorneys or consultants to help cut through the red tape. “It’s obscene that people would have to hire an attorney in order to access the health care system,” she said.

Betsy Crimi, human services coordinator for the city of Huntington Beach, said it is not uncommon that patients “fall into the cracks.” On the average, she said, a person must make 40 calls to social service agencies before getting the help he or she needs. For many the process is so discouraging they give up, she said.

Shirley Gaw never gave up.

Her repeated pleas for help prompted the county’s Adult Protective Services to investigate her husband’s case. Last month, the agency, which intervenes in cases of neglect, abandonment or when adults cannot care for themselves, determined that Jose Gaw could not get all the care he needed at home.

Agency workers hastily arranged temporary care for him through the federal Social Security Administration and Medi-Cal. He is now staying at a county convalescent home.

Shirley Gaw is relieved at finally finding help for her husband. She said, however, it is uncertain what will happen once his stay at the convalescent home comes to an end. She also said her husband still needs physical therapy.

Until he receives that therapy, Shirley Gaw vowed to continue her search for help.

“We don’t want food stamps, we don’t want money. We just want treatment so that Jose can walk again,” she said.

Government Health Care Programs

MEDI-CAL

Provides medical services such as prescriptions, operations, doctor visits.

* Who’s eligible: Legal residents of California 65 or older, blind, disabled or with children under 21 and who meet certain financial restrictions.

* Who runs it: Federal and state governments; program is administered locally by the county.

* Financial restrictions: Individuals may have no more than $1,800 cash, savings or other liquid assets; couples no more than $2,400. Items such as homes and cars are exempted. Income does not affect eligibility, although the more money recipients earn, the more they must contribute to defray the costs.

MEDICARE

Provides medical services such as prescriptions, operations, doctor visits.

* Who’s eligible: Generally, anyone 65 and older or disabled for two or more years.

* Who runs it: Social Security Administration.

* Financial restrictions: None.

STATE DISABILITY INSURANCE

Provides weekly cash payments up to $266.

* Who’s eligible: Anyone disabled, although service is provided for one year only.

* Who runs it: State Employment Development Department.

* Financial restrictions: None, as long as recipients are unable to work.

MEDICAL SERVICES FOR INDIGENTS

Provides emergency care for illnesses that are life-threatening or cause severe pain.

* Who’s eligible: Legal residents ages 21 to 64.

* Who runs it: County health care agency.

* Financial restrictions: Same as Medi-Cal.

SOCIAL SECURITY DISABILITY INSURANCE

Provides income averaging about $627 a month to disabled recipients, plus income for children and spouses; after two years in the program recipient is automatically enrolled in Medicare.

* Who’s eligible: Disabled people under 65 who have paid into Social Security for five of the previous 10 years.

* Who runs it: Social Security Administration.

* Financial restrictions: None.

SUPPLEMENTAL SECURITY INCOME

Provides income of up to $620 a month; recipients are automatically enrolled in Medi-Cal.

* Who’s eligible: Anyone 65 or older, or who is blind or disabled.

* Who runs it: Social Security Administration.

* Financial restrictions: Generally, no more than $640-per-month income; no more than $2,000 in cash, savings and other liquid assets for individual; couples, no more than $3,000. First car and home are exempt.

Sources: County, state and federal health care officials; researched by JON NALICK / For The Times