A place where elderly find comfort, community
One month from now, thousands of poor elderly and disabled Californians will likely lose access to the day centers where they receive meals, therapy and medical care, as well as companionship and a sense of community.
Advocates say the state’s elimination of the Medi-Cal Adult Day Health Care (ADHC) benefit – slated for Dec. 1 – endangers some of California’s frailest individuals, people who suffer from multiple disabilities including dementia, incontinence, paralysis and traumatic brain injury. As the centers are forced to close, advocates say, many of these people will be left home alone, vulnerable to abuse and neglect, and at high risk of landing in emergency rooms and nursing homes.
“I always hate to say it, but people will die,” said Nina Nolcox, CEO of Graceful Senescence, a center in South Los Angeles that serves 120 people, most of them African-American.
Los Angeles County – especially its many ethnic minority communities –will be hit hardest by the closures. According to state data, the county is home to more than 60 percent of the program’s 38,000 enrollees statewide. One quarter have dementia. Forty percent are incontinent. Nearly half have a psychiatric diagnosis. More than 70 percent do not speak English.
The centers provide them with transportation, meals, exercise, medication management, physical and occupational therapy, as well as robust social programs that many participants say have renewed their will to live.
“I do not want ADHC to be closed, because it helps me a lot,” said Bibiana Viernes, a slim, elegant 85-year-old from the Phillipines who has attended the Silver Lake Adult Day Health Center for the past eight years. Viernes is legally blind. She says the Center’s therapists have improved her asthma and relieved her painful joints. She’s made friends and discovered a talent for public speaking.
“If ADHC is going to be closed I am forced to stay at home alone,” she said. “I live with my son and his wife but they go to work every day. …I will be depressed. I will become lonely.”
The state decided to eliminate the more than 30-year-old ADHC program this past summer in order to save $169 million – part of the administration’s attempt to close a $26.6 billion budget gap. The program costs $76 per participant per day, half paid by the state, half by the federal government. Norman Williams, a spokesman for the Department of Health Care Services, said there wasn’t much left to cut from – many other optional Medi-Cal benefits, including adult dental care, were eliminated in previous years.
“California is operating under a tremendous budgetary crisis,” he said. “The reductions are painful and they are things that would not normally be done in other situations.”
Assemblywoman Mariko Yamada, (D-Davis) chair of the Assembly Aging & Long-Term Care committee, said she and 37 other state legislators signed a letter in August asking the state to push back the elimination deadline until March. She had agreed to vote for the ADHC cuts, she said, with the understanding that $85 million would be allocated in a later bill to create a similar, if smaller, program. She said she was surprised when the governor vetoed the bill this summer.
“I want to be on record now to say, ‘Had I known, I would never have supported this,’” Yamada said. “This is a vote that I will regret for the rest of my career, because I know it’s wrong.”
An advocacy group, Disability Rights California, is suing to halt the closures until the state can assure adequate services to prevent hospitalization or placement in nursing homes. A hearing at a federal district court in Oakland is set for November 8th –just weeks before many centers expect to close.
“We think this is a human disaster and nobody seems to be really listening,” said Lydia Missaelides, Executive Director of the California Association for Adult Day Services. “If there’s no injunction and this doesn’t slow down, we’re going to see hundreds of centers close, almost all in the month of December.”
As the clock ticks, centers are preparing their participants to say goodbye.
The other morning, at the mostly Filipino Silver Lake Adult Day Health Center, Viernes and her friends ate breakfast, participated in a group exercise session, and watched beaming fellow participants perform traditional dances.
Then the center’s program director, Mila Anguluan-Coger, asked them to share a “gift from the heart” for Silver Lake. At first their answers were short. “Hugging each other,” said one. “Pray for Silver Lake,” said another.
But the answers became increasingly emotional.
“In my life, this is the first time I am very happy,” said one participant. “If Silver Lake close, I am sick, I am lonely, I am crying.”
“Here I feel young and strong,” said another. “If it closes, maybe in a week or a month, I’ll be dead. That’s my feeling.”
Advocates worry the closures will force participants’ family members, many of whom depend on centers for a few hours of daily respite, to make impossible choices. Some may have to decide between quitting their jobs, sending loved ones to nursing homes where they will lose their independence– or leaving them home alone.
Coulsander Johnson, 41, became a fulltime caregiver after her 65-year-old mother had a stroke, was diagnosed with Alzheimer’s and came down with ovarian cancer –in rapid succession. The stress of 24-hour-a-day caregiving took a toll on Johnson – who had to quit her job.
“It was hard,” she said. “Very, very, very hard.”
Enrolling her mother in Graceful Senescence in south Los Angeles three years ago was “a blessing” she said. Her mother relearned to walk and talk. Johnson was able to return to work part-time.
“This is like a safe haven for me and for her,” she said.
Assemblywoman Yamada and other critics expect the proposed budget savings will likely disappear as the state finds itself paying expensive bills for patients landing in nursing homes and emergency rooms.
A 2010 report by the healthcare consulting firm, The Lewin Group, added those costs to the predicted budget impacts of job loss for family caregivers and thousands of ADHC employees. By eliminating the ADHC benefit, the Lewin report estimated, the state stands to lose $51 million this year.
Williams, of the Department of Health Care Services, said it’s too soon to predict whether ADHC participants will actually land in nursing homes and emergency rooms. The state plans to pay an additional $60 a month per person to public and commercial managed care plans around California to absorb many of the centers’ participants. Other participants may choose to continue with “fee-for-service” Medi-Cal. Williams says participants are currently being assessed to determine the services they need.
Patrick Johnston, president of the California Association of Health Plans, says managed care plans “will do the best they can with the limited funds available” but said it will be a “challenge” to keep some of the most fragile participants out of nursing homes.
“The short answer: services will not be the same,” he said.
As they prepare for the transition, some centers are trying to reinvent themselves to avoid closure – either by taking in more private pay participants, or getting certified to provide other types of services. But 24 of the state’s 311 centers have already closed this year.
Erin Pak, CEO of the Korean Health, Information, Education and Research center, said her organization closed one of its two centers in August, in preparation for the Dec. 1 elimination date. They were able to send most participants to a nearby center. But, once December hits and more centers close, Pak expects most Korean families will try to keep elderly relatives home because of the shame associated with placing them in nursing homes. Her greatest concern is that many seniors will no longer eat – because they are too feeble, don’t have the money, or don’t have the will.
“I worry,” she said, her eyes welling with tears. “I think all of our staff worry a lot about what’s going to happen to them.”