August 31, 2009 was D-Day for Barbara Porter, director of the Inland Empire Adult Day Health Care Center (ADHC) in Corona, Calif. That is when, due to recent state budget cuts, MediCal (the Medicaid program in California), will slash its funding level for users of ADHCs from five days a week to three.
“Our families are scrambling,” said Porter. “I know of at least 10 elderly participants who will be put into nursing homes immediately because there is no one to care for them those two days they can’t come here.”
The Inland Empire ADHC is one of 340 adult day programs in California. An ADHC is a licensed MediCal-certified health facility that treats the health and other needs of older adults with multiple chronic conditions, such as Alzheimer’s or Parkinson’s disease. The centers provide an organized day program of therapeutic, social and health services and offer a respite for families caring for loved ones who can’t be left alone.
Because two days of the workweek have been cut, the options left for families are not easy. For most family caregivers, reducing their hours or quitting their job to provide care is not an option during these tough economic times. So many will either pay the ADHC out-of-pocket rate, hire a “sitter,” put relatives in a nursing home or risk leaving them home alone.
“Some of our participants require 24-hour care,” said Porter. “Leaving them alone would be considered abuse.”
The elders who come to the Inland Empire ADHC fall into two groups–those who have been developmentally disabled for most of their lives, and others struggling with the ravages of aging, such as dementia and other chronic illnesses.
“People come to us when Grandpa forgets and leaves the stove on, or when Grandma has a stroke and needs daytime care,” said Porter. About 100 participants come to her center regularly.
Years ago, developmentally disabled adults seldom reached old age, however because of advances in treatments over the years, life expectancy is growing longer.
“Some of these people are over 60 and being cared for by aging siblings because the parents have passed on,” Porter observed.
“Because people are living longer, it is not uncommon for us to see frail elderly children caring for sick elderly parents, or vice-versa.”
“Our Son is Helpless”
Family caregivers, such as 63-year-old Corona resident Sandy Davis, depend on ADHCs to give them a break from the constant demands of caring for a severely disabled loved one.
Sandy’s son Desmond, 36, suffers from a complex mental illness called schizoaffective disorder, which includes paranoid bipolar disorder and major depression.
To control the condition, Desmond takes a host of medications. However, prolonged use has caused medically induced Parkinson’s disease.
“There have been times when Desmond has been hospitalized over 20 times in a single year,” said Davis. “My husband and I assist him in taking his medication, eating, dressing, and bathing. Our son is helpless.”
Davis feels “blessed” to have a daughter and grandchildren who can help with Desmond’s future care. For now, though, Inland Empire ADHC has given the family a respite from 24-hour caregiving and provided Desmond a chance to exercise and interact with others in a safe, medically controlled environment.
Davis is still employed, so her retired husband will have to pick up the slack during the additional two days. “I know Desmond will be disappointed,” she says. “He loves the time he spends with friends at the day center.” Family caregivers and advocates for elders are searching for alternative ways to counter the missing two days of service.
While some residents of more affluent coastal cities can afford to pay as much as $200 daily in out-of-pocket costs for adult day health care, many family caregivers in the Inland area cannot afford the $80-a-day rate the Inland Empire ADHC charges.
MediCal covers $76.50 per day for ADHC services, and $170 to $200 per day for nursing home care–so it will cost the state more if caregivers resort to putting their loved ones in nursing homes.
In addition, not all nursing homes accept MediCal. Some only allot a small number of beds to the low-income MediCal patients. Recently, in an impromptu survey of nursing homes within a 50-mile radius of the Inland Empire ADHC, Porter found only one MediCal bed available.
“I Can’t Lose My Job”
The situation is especially grave for family caregivers in the Inland Empire, an area devastated with high unemployment and foreclosure rates. Porter reports, “Families are calling me crying because they don’t know what they are going to do. Few can afford to pay because they are already dealing with housing and employment issues.”
One family member in constant contact with Porter these days is “Louise,” who asked not to be identified by her real name.
An office administrator for a nonprofit, Louise said her mother, 69, suffers from seizures and other repercussions from a stroke she had 17 years ago. She is completely disabled and requires constant care.
Louise is locked in a battle with her boss to restructure her workweek so she can care for her Mom on one of the two days she can’t go to the center. “I want to work 10-hour days Monday through Thursday so that I can stay home with my Mom on Friday’s. My boss is not hearing it–she won’t go for it because I manage the office and she needs me there all five days.”
For the other eliminated day, Louise’s grown daughter and high school-age son will care for their grandmother. “My daughter wants to move out of the house, but she can’t because I need her help with Mom. She is able to cut some hours on her job to be here on Tuesday until my son gets home from school. He can’t participate in after school activities, because even when my Mom is at the center, they bring her home around 3 p.m., and he is the only one who can be home then.”
All three women, Porter, Davis and Louise admit the situation could be much worse.
Gov. Schwarzenegger had initially recommended eliminating funding for ADHCs entirely, prompting family caregivers throughout the state to write impassioned letters to the State Budget Committee asking that the funding be saved.
The lost two days of MediCal funding for adults day health care resulted from a compromise between the governor and state Assembly Democrats.
In a conference call with ethnic media following the budget agreement, Assembly Speaker Karen Bass said her goal was “to prevent the proposed elimination of California’s safety net” for families, children and seniors.
“The governor wanted to eliminate adult day care,” said Speaker Bass. “We fought for it.”
Still, California became the only state in the U.S. to cap ADHC at 3-days-per-week. In the short run the measure will save state an estimated $24 million. However, all agree that these savings will be lost if families are forced to place their loved ones in nursing homes.
Furthermore, experts warn that California is a long way from being out of the woods as property and income tax revenue continues to fall and social service needs rise. The hard-hit Inland Empire region is not expected to see economic recovery before 2011.
The current economic crisis has not only affected families using Inland Empire ADHC– three of the center’s staff members have lost homes to foreclosure this year.
Porter laments that times will get worse as families grapple with caregiving responsibilities, increased stress, and the strain if making ends meet.
“Caregiving burnout is high anyway and now it will only get worse,” she said. “None of us knows where this is going to end,” she said.
About the Author
Attorney Steven Peck has been practicing law since 1981. A former successful business owner, Mr. Peck initially focused his legal career on business law. Within the first three years, after some colleagues and friend’s parents endured nursing home neglect and elder abuse, he continued his education to begin practicing elder law and nursing home abuse law.