THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Tuesday, February 14, 1995 TAG: 9502140322
SECTION: LOCAL PAGE: B1 EDITION: FINAL
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: Long : 118 lines
Jim Calloway is a realist. When he learned last March that he had AIDS, he began looking for a warm, loving home so that when the time came, he would have a place in which to die.
The region's in-home AIDS hospice, Full Circle, wasn't what he needed, he realized, because he lives with his parents in Norfolk and didn't want them to have to nurse him through the horrible last stages of the disease.
His doctor, Silverrene Roundtree of Virginia Beach, suggested Northern Virginia, where long-term-care facilities exist. But Calloway wanted to die surrounded by his friends and family, not 200 miles away and alone.
Then Roundtree, a family practitioner who treats AIDS patients, told him she was writing a grant to fund a 150-bed hospice.
Now, the idea has become an obsession for the 38-year-old Calloway. He envisions not just one large hospice for people with AIDS, but also several community homes, designed like bed-and-breakfasts, in which people dying from AIDS-related complications could find medical and social support as well as much-needed housing.
Such facilities are necessary, say advocates for AIDS services, because improved medications mean patients are living longer and requiring more care.
And the demand will continue to grow. Earlier this month, complications from AIDS became the leading killer of young Americans, claiming one of every five who die between ages 25 and 44.
Statewide, more than 420 AIDS patients are enrolled in a 3-year-old Medicaid waiver program designed to keep them out of nursing homes, a fourfold increase since 1991, according to Chris Pruett, manager of community-based care for the Department of Medical Assistance Services.
The Medicaid waiver program provides case management, private nurses, personal and respite care, and nutritional supplements for people with AIDS.
The program's costs have risen from $659,000 in 1991 to $4.5 million in 1994. But it still costs less than hospital or home nursing care, which the state estimates would have cost $6.2 million last year, Pruett said.
The increasing number of waiver recipients has trickled down to the local area. At Personal Touch, a home health care agency in Norfolk, the two AIDS case managers there have each doubled their waiver caseloads in the past month.
``The gamut of services we can give them through the waiver service is amazing,'' said Jennifer Zinn, a case manager with Personal Touch. One of her patients, 34-year-old Steven Wordell of Virginia Beach, who is partially blinded because of AIDS, has a nurse's aide come to his apartment four hours a day, five days a week.
Wordell remembers his reaction upon hearing that the program would pay for all his medical needs, including $1,700 a month for medications.
``Honey, I've heard that before,'' he said.
But he has been surprised. ``They take care of everything,'' he said, including his emotional needs. ``Whenever I need someone to talk to, Jennifer is there.''
But as the AIDS population changes and more intravenous-drug users contract the HIV virus, the need has increased for alternatives to home-based programs like the Medicaid waiver. And finding other options is difficult, said Lynn MacDonald, who finds support services for AIDS patients after discharge from Sentara Norfolk General Hospital.
``That AIDS waiver is wonderful,'' said MacDonald, ``but when they get to the point where they need a nursing home, it's a major problem. Trying to put an IV drug user in a nursing home is almost impossible.''
Indeed, few AIDS patients wind up in nursing homes. One reason is that their care is so intensive and expensive that many nursing homes aren't equipped to provide it.
Another reason, said Betty Freeman, administrator at Hillhaven Rehabilitation and Nursing Center of Virginia Beach, is that the AIDS patients themselves don't want to go into a traditional nursing home.
``It's more the idea of the atmosphere than the atmosphere itself,'' she said. Nursing home populations are elderly, and recreational and social activities are usually geared to that population's needs.
``The need for long-term care, particularly housing, is enormous,'' said Michael Robbins, executive director of the Tidewater AIDS Crisis Taskforce.
AIDS patients deal with grief and family issues in addition to their medical problems, he said. ``They have certain kind of needs I don't think a nursing home can provide.''
Which is why Calloway wants to build his homes.
``I want peace of mind; to go someplace and be taken care of by people who are not afraid of AIDS and have no prejudice of it,'' he said. ``People with AIDS want a place where they're going to be treated with dignity. And when you're sick, you don't want that cold, clinical hospital atmosphere.''
To make their dream a reality, Calloway and Roundtree have formed the Calloway Hospices organization and are seeking nonprofit status.
They have a 21-member multicultural board of directors, a one-room office carved out of an examining room in Roundtree's practice, and a post office box.
Calloway envisions three levels of care for AIDS patients.
The first, a temporary-care facility, would provide assistance and housing for those who have just been released from the hospital or who can't get the care they need at home. It would also serve as a respite facility for caregivers who need a break.
During their stay, residents would be introduced to social programs available and receive pastoral and grief counseling, as well as assistance with drug rehabilitation, if necessary.
The second level would be similar, but permanent, for the very ill who have nowhere to go.
The third would be the 150-bed hospice itself, which would focus on providing support and family counseling.
``We want to give them a place where they can feel real good,'' Calloway said, ``and maybe empower them enough in their mind to get stronger and better.'' MEMO: For more information about Calloway House, call 460-5924. Donations may
be sent to P.O. Box 5648, Virginia Beach, Va. 23455.
ILLUSTRATION: ON A MISSION FOR AIDS PATIENTS
[Color Photo]
PAUL AIKEN/Staff
Jim Calloway, 38, envisions a hospice and community homes, where
people with AIDS can find housing and medical and social support.
KEYWORDS: AIDS LONG-TERM HEALTH CARE by CNB