The New York Times - November 9, 1986
Sandra Friedland

On the public front, the state's Department of Human Services has requested a three-year Federal waiver to expand the AIDS outpatient health services covered by Medicaid, the state and Federal health-care program for the poor.

State officials said that the waiver would allow more AIDS patients to receive home care, saving about $10 million a year in hospital costs.

"This is one of those rare opportunities to offer more-compassionate and better care while substantially reducing spending," said Dr. Drew Altman, Commissioner of Human Services.

The waiver also would provide home and community-based services to patients with AIDS-related complex (ARC), a debilitating but less deadly form of the disease and believed to be 10 times more prevalent than full-blown acquired immune deficiency syndrome.

In the private sector, the Princeton-based Robert Wood Johnson Foundation has awarded the state's Department of Health a four-year, $3.2 million grant for a wide range of AIDS services in Newark and Jersey City, which rank 7th and 15th, respectively, in AIDS cases among the nation's cities.

Foundation officials said that the grant, one of nine nationwide, would "help relieve the burden which caring for AIDS patients has placed on many urban hospitals in the absence of alternative, community-based care."

As of last Tuesday, the state had 1,590 confirmed cases of AIDS; only New York, California, Florida and Texas have more.

Sixty-one percent of New Jersey's victims have died of the disorder, which devastates the body's immune system, leaving victims prey to a host of virulent diseases and, in some cases, neurological problems, including dementia and blindness.

Nationwide, the majority of AIDS patients are homosexual men. In New Jersey, however, more than half the victims are intravenous drug users - dirty needles are a prime route for spreading AIDS - their sexual partners and their children, who are some-times born with AIDS. Many lack stable homes or families and have a history of serious medical problems related to drug use.

Delivering home health and community-based services to such patients poses formidable challenges, according to health and social workers.

In the past, advocates for AIDS victims and their families have complained that the state has not responded adequately to patients' needs.

Last week, these advocates said that the Medicaid waiver and the Robert Wood Johnson grant would help, but stressed that there still was a critical shortage of housing for AIDS and ARC victims.

"The greatest need in New Jersey is for residential spots and nursing home or hospice beds," said an AIDS coordinator at a northern New Jersey hospital who asked to remain anonymous.

She noted that many patients stayed in hospitals until they died because they had nowhere else to go.

The state's Department of Health had been trying to set up a 60-bed AIDS unit in a Newark nursing home, but negotiations collapsed last month when Mayor Sharpe James of Newark and several City Council members objected to the plan.

Dr. John Rutledge, a deputy commissioner of health, said that the state would not try another nursing home, but would be a "facilitator" for any community that wanted to arrange such care for AIDS patients.

Dr. Altman acknowledged that the proposed waiver did not address the problems of housing or nursing-home space for AIDS victims, but he predicted that expanded Medicaid coverage would encourage health-care providers to offer more AIDS services.

"This initiative represents a fairly significant philosophical shift in Medicaid in New Jersey," Dr. Altman said. "We are making it serve as a catalyst for better services, rather than function just as a bill payer."

The waiver, which would be the first of its kind in the nation, would increase the type and scope of services that Medicaid covers, as well as relax some of the income requirements that have kept needy AIDS patients from getting Medicaid benefits.

Under the waiver, these benefits would include:

* An interdisciplinary approach to planning for AIDS patients' care.

* Up to 16 hours a day of private nursing for those patients with a live-in primary caretaker.

* Up to 30 days a year of respite care to relieve friends or relatives who care for AIDS patients.

* Medical day care.

* At-home methadone treatment for heroin addiction.

* Home health aide visits.

* Social services and additional payments to foster parents who care for children with AIDS.

State officials estimate that, with these benefits, it would cost Medicaid an average of $22,900 a year for each AIDS or ARC patient, compared with the $30,500 a year that Medicaid now pays.

With the new benefits, Dr. Altman said, many AIDS patients could leave the hospital.

As an example, he cited the case of a 25-year-old male drug abuser with AIDS whose sister could take him home if help were available while she was at work.

The waiver, he said, would allow Medicaid to pay for home health aide and homemaker services and methodone therapy, as well as for transportation to the brother's outpatient appointments.

Dr. Altman, who was a vice president at the Robert Wood Johnson Foundation before his appointment as Human Services Commissioner last July, said the Medicaid proposal was the first step toward permanent financing for the AIDS services that would be established under the foundation's grant to New Jersey.

That grant will pay for AIDS "case managers" at six Newark and Jersey City hospitals. These managers will coordinate post-hospital care, social services and entitlements for AIDS victims and their families.

Grant funds also are going to the New Brunswick-based Hyacinth Foundation, a private AIDS service agency, for education campaigns aimed at bisexual men, as well as women who can pass the AIDS virus to their unborn children.

Although no statistics are available on the number of bisexual men in Newark and Jersey City, experts say there are thousands of women in the two cities who are in their prime child-bearing years and at high risk for getting AIDS because they or their sexual partners are intravenous drug users.

In addition, $168,000 a year from the grant will go to Children's Hospital of New Jersey, part of United Hospitals Medical Center in Newark, to bolster services for children with AIDS.

"Instead of struggling along, we will have a designated AIDS treatment program," said Mary Boland, the registered nurse who directs the Children's Hospital AIDS program.

She said that the grant money would pay her salary and the salaries of coordinators for volunteers and home health services, a data manager, a social worker and a clinical nurse-specialist.

Ms. Boland added that the grant money also would help the hospital set up an all-purpose residence to house AIDS children, provide day care and respite care and serve as a hospice for young AIDS victims in the final stages of the disease.

Such a facility, she said, would help children like a 4-year-old who has been hospitalized with AIDS since last August.

"His mother also has AIDS and cannot cope with his illness," Ms. Boland said. "If we had an intermediate-care facility, he could be treated in a more homelike setting."

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