Miami Herald - Wednesday, December 20, 1995
Peggy Rogers, Herald Staff Writer

To get another year's food stamp allotment, he needs documents from his mortgage company, condo board, condo insurer and car insurer. He also needs his birth certificate, Social Security card, phone bill, light bill, bank statement, car title, car registration, driver's license, doctor's statement and a few months worth of medical bills.

For the disabled Miami Beach office manager and thousands of other Dade residents, mustering strength against AIDS is not enough.

They face a sometimes Herculean day-to-day struggle for public assistance, according to patients, experts and a new study that documents the challenges, successes and frustrations of Dade residents with HIV and AIDS.

"We see people who are very weak, very much in pain, who have to take very long bus rides and then wait hours for services," said Martin Terris. He is director of planning and community development for Dade's HIV/AIDS Planning and Management Organization, the nonprofit group producing the study.

"I think the community is doing a good job, but the frustrations are real, the pain is real, and the situation gets more desperate as these people get sicker and sicker," Terris said.

There is no one group that oversees assistance for people with AIDS and HIV.

Money comes from Washington and Tallahassee. Four local public agencies decide where much of it goes. And more than three dozen clinics, charities and church groups dispense different bits. Services range from dental care to drugs, from suicide counseling to bus tokens.

Many people disabled by the virus also receive non-AIDS assistance, like food stamps, Medicaid and disability payments. Those benefits come from other state and federal agencies.

"You can just see the idiosyncrasies. There can be separate eligibility criteria, separate pieces of paperwork required, separate agencies that administer the separate programs," said Margaret Paternek, an associate director of the HIV/AIDS Planning and Management Organization.

"This kind of translates into a whole series of barriers to the person who needs care," Paternek said.

To qualify for some benefits, for instance, people have to document every job they've held for 15 years, who pays for the food they eat and every medical exam or lab test they've undergone.

To arrive for midday appointments at Jackson Memorial Hospital, some South Dade patients must set out for bus stops at dawn.

To obtain grocery vouchers, they must choose between agencies that have no lines but frequently run out of vouchers and agencies that have plenty of vouchers but hours-long waits.

To receive home-delivered prescriptions, some must travel to a caseworker for a referral, which then must be hand-delivered to the drugstore.

Frustrations have grown this year because local authorities made it tougher to qualify for assistance. The authorities either had to tighten eligibility, or run out of money, Dade County AIDS advisers say.

After the rules were tightened, one man said in the HIV/AIDS study: "Everybody at different agencies had a different idea about what was required, so some people were asking for this, others for that, and it was confusing as to what you had to carry around town to show to people."

Some assistance rules seem illogical.

Melford Curry, who has HIV and a disability pension, may be penalized for wanting to work.

Although hospitalized in the past, Curry's health is good enough that he took a part-time job helping other people with AIDS.

But his $140-a-week earnings may jeopardize his $420-a-month disability pension and insurance. A review of his case, set for next year, will determine if he has to give up one or the other, he said.

"Am I supposed to just sit home and wait?" Curry said. Bureaucracies "look at the disease as being deadly, so there's no room for growth and progress."

Curry, who has been an AIDS volunteer and adviser to government panels, said he needs the disability insurance in case he gets sick again. But if he goes to work full-time, he'd have to give up disability coverage and probably face rejection by private health insurers.

The frustrations extend beyond regulations.

The HIV/AIDS study said Dade can barely begin to fill the need for some services, particularly housing. So little housing exists that some people are referred to hospices before the virus becomes full-blown AIDS, the study found.

With other services, the quality is uneven -- great at one place and lousy at another.

Some patients, quoted anonymously in the study, speak of humane doctors and heroic social workers, including one who scoured streets and parks to make sure a patient had medication.

Michael Wheeler, the disabled Miami Beach office manager, found a doctor he liked so much that he followed her to Coconut Grove from a clinic three blocks from his home. "I swear by her. I trust her implicitly," said Wheeler, who has public Medicaid insurance.

Others told of doctors who shun them, including one who hid behind a curtain, and insensitive workers, including hospital staff who urged one mother with HIV to be sterilized.

Often, help exists in Dade but getting to it is a "major problem," according to the study and patient advocates.

When Jackson Memorial Hospital sets 1 p.m. appointments for mothers with the virus, those from places like Homestead and Florida City often show up late.

"In the past, we used to get angry: 'Why aren't these patients coming on time?' " said Jackson case worker Johnnie Mae Carzell. "And then they'd tell us about how long it took for them to get here. And some of them would be traveling with kids who are infected. We became more sensitive to what they were going through.

"They have to leave at 7 a.m. to get here on time," Carzell said, who said she sometimes drives patients to the next place they have to go. "There's no services for them down there. Absolutely nothing."

The hours patients spend on buses and in waiting rooms can yield just a few minutes of someone's time, researchers found. Waiting to be seen is an "all-day affair" at a few places.

So is hunting down assistance for such things as grocery vouchers. People can take two and three trips in a week for a voucher or prescription.

At the Center for Haitian Studies, Little Haiti residents are told they're eligible for $25 vouchers. But the center is often out of them, said case worker Dan Desmond.

Agencies are supposed to spend their own money for vouchers, then seek government reimbursement.

"A small, struggling agency like ours, we'd have to put up $10,000 that we don't have," Desmond said. "We have a hard time putting the money up front, and that comes down on the client."

AIDS AND HIV VIRUS IN DADE

* The numbers: More than 16,000 Dade residents have contracted AIDS -- and 9,700 have died -- since the epidemic's inception. An estimated 38,000 residents now have HIV.

* The need: Eight of every 10 Dade patients who sought public AIDS assistance in a recent three-month period were poor -- living on $155.50 a week for a one-person household.

* The assistance: Tens of millions of dollars from the state and Washington go to four public entities: the county, Miami, the Public Health Trust and Florida's local Health and Rehabilitative Services office. The HIV and AIDS money is distributed among clinics, charities and other groups.

* For information: Health Crisis Network has AIDS hotlines in English, (305) 751-7751; in Spanish, (305) 759-1213; and for the hearing impaired, (305) 758-1971. They are staffed from 9 a.m. to 9 p.m. Monday to Friday, and 10 a.m. to 3 p.m. Saturday.

For housing, a 24-hour hotline provides recorded messages: (800) 515-2557.

SOURCES: Dade County HIV/AIDS Community Needs Assessment, 1995; HIV/AIDS Planning and Management Organization; Florida Department of Health and Rehabilitative Services.

CUTLINES

CANDACE BARBOT/Herald Staff

PAPER TRAIL: Michael Wheeler, who lives in South Miami Beach, sits with his cat among the piles of paperwork and government forms he must deal with to get public assistance.

CANDACE BARBOT/Herald Staff

DAILY STRUGGLE: Michael Wheeler, who has the AIDS virus, faces bureaucratic difficulties shared by thousands of Dade residents.

CAPTION: PHOTO Michael Wheeler (2 - a)
951220
MH951207

Always watch for outdated information. This article first appeared in 1995. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1995. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .