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Comforts of home

“We have one woman in her late 50s who has very complex problems — she’s diabetic, on dialysis, had leg surgery, eye problems, and needs lots of specialists,” Thornton says. “Her care is very labor-intensive, and she must see a nurse daily. Although shevery disabled, we’re able to care for her in the clinic and the day center, where she’s developing her musical pursuits on piano and harmonica, and other aspects of her personality. She’s thriving here.”

Another participant is a functional quadriplegic who lived in a nursing home for many months. Through On Lok, he was provided with federally subsidized housing, a Hoyer (patient) lift, meals, and regular turning to prevent skin breakdown. The man daily visits the day program for recreational activities.

“We accepted one woman who weighed 600 pounds, was diabetic, and had a mental health diagnosis,” Kefgen says. “She went from agency to agency because it was so difficult to care for her. She was very challenging, but we didn’t have to solve all her health problems, just make her life better. We sustained her at home for over five years with twice-daily visits, and twice-weekly clinic visits. After she had coronary heart failure and was completely bedridden, she spent her last two years in a nursing home. But she still came here some days, and we maintained her care and followed her there. She was quite outgoing, and she knew as much about our staff and other participants as we knew about her.”

A pair of fraternal twins who had always lived together although one had a developmental disability, entered the program when the other developed dementia. “With HUD cluster housing, 24-hour aides, and chore service, they’ve been able to remain together despite the Alzheimer’s progression,” Kefgen says.

When he no longer could provide care at home, one man enrolled both his mother, a centenarian, and his brother, an amputee who has a developmental disability. Both mother and son have since died, but the brother remains in the program. “He really bloomed and blossomed here,” Kefgen says. “He loves to come to the center, and now he’s playful, verbal, and delightful.”

PACE also enabled a woman in her late 70s to leave a nursing home after her aortic aneurysm repair, even though she was paralyzed from the waist down. “We got her into an apartment alone, with twice-daily home and center care,” Filak-Taylor says. “She was at home and cognitively alert for 18 months before she passed away.”

Taking off

The first and subsequent PACE programs are based on the British day hospital model of care. The first to open in the United States, in 1973, was the San Francisco-based On Lok program. During the next 10 years, it expanded its services, and in 1983, was the pilot for new financing that used government funds on a capitated (maximum per person) basis for each participant. With its success, the federal government approved 10 other organizations for similar services and billing, much of it funded by the Robert Wood Johnson Foundation, the John A. Hartford Foundation, and the Retirement Research Foundation.

The federal government subsequently approved PACE programs as qualified recipients of Medicare and Medicaid, although it set limitations on the number of new PACE programs that may open each year. California has approved them as Medi-Cal recipients. Programs also accept private payment from participants who don’t qualify for other benefits.

PACE is not open to everyone. Eligible individuals must live within the designated PACE service area, and be able to live safely at home at the time of their enrollment, yet meet their state’s certification criteria for requiring nursing home care because of their physical and mental needs.

Most programs are funded to accept only participants who are 55 or older, but some are able to accept participants older than 17. If a PACE participant needs nursing home care either for short-term rehabilitation or a longer period, PACE pays for care and continues to coordinate care and services.

Now, 40 PACE programs in 19 states are in operation, with more opening. For a complete list, see www.NPAonline.org or call the National PACE Association in Alexandria, Va., at (703) 535-1565.

Nationally, most PACE participants are similar to their counterparts in nursing homes. According to the National PACE Association, on average a participant is 80 years old, has 7.9 medical conditions, and limitations in about three of the five major activities of daily living (bathing, dressing, feeding, toileting, and transferring). Almost half are diagnosed with dementia. Yet despite the complexity of their conditions and needs, more than 90% continue to live in their community home, according to the National PACE Association website.

The PACE programs pride themselves on culturally sensitive care and multilingual staff to serve immigrants. For example, San Francisco’s On Lok website can be read in any one of nine languages, primarily Asian dialects, and the program provides staff fluent in each. The Bronx, N.Y., PACE program provides staff fluent in English, Russian, Korean, Chinese, and Spanish — and who know the different cultural concerns of, say, Hispanics from Puerto Rico, the Dominican Republic, Mexico, or South America. When Muslim participants in the Sisters of Providence PACE program in Seattle (which serves American Samoan, American Indian, Japanese, Chinese, African, Mexican, and other participants) celebrated Ramadan, which requires extensive fasting, Muslim staff explained the dietary exemptions for elders, tested blood sugar daily for those fasting, and provided home health services for those who would not attend the clinic for the month. PACE programs also strive to integrate family members into regular care planning sessions and in providing whatever services or support they desire.

“PACE allows family members to reclaim and live their own lives,” Kefgen says. “It allows them to be the spouse or child, not the caretaker or boss who restricts the participant’s life. When they’re not just the provider, they can relax and visit, and just be with the person.