Program offers support services to those caring for relatives or friends with cognitive impairments
By Melissa Flores
Nearly 12,000 caregivers across California will feel the effects of Gov. Jerry Brown’s proposal to cut state aid to caregiver resource centers.
The cuts will touch the lives of women like Audrey, 77, who has relied on the Del Mar Caregiver Resource Center in Santa Cruz for the last five years. She cares for her husband, who has multiple sclerosis and is almost 81. She discovered Del Mar five years ago in what she describes as a period of crisis in their lives.
Audrey uses the center’s counseling services and the support groups. She’s taken classes at the Caregiver University, an annual workshop that counsels participants on issues like self-care and how to understand dementia or the other behaviors that results from the illnesses of their loved ones.
The current proposed budget calls for all state funding to be withdrawn from resource centers for a savings of $2.9 million statewide.
The proposed budget calls for a total of $10.3 billion in cuts for the 2012-13 fiscal year, with a revision due in May before the budget is enacted in June. Part of the budget hinges on proposed tax measures that could be on the state ballot in November.
There are 11 centers across the state that provide services to caregivers who are providing support to a family member suffering from a cognitive impairment or ailment, such as Alzheimer’s, dementia, a brain injury or a variety of other illnesses. Del Mar provides support to Santa Cruz, Monterey and San Benito counties.
“It’s one of the only agencies that helps caregivers,” Audrey said, adding that if the services were cut, she would have to continue to care for her husband at home on their fixed income. “It’s a very difficult situation. All the help you get is important.”
In the five years she’s used the services, they have been integral to helping her cope with the stresses of caregiving.
“When I went initially, I used the counseling and went to a spousal caregiver support group,” she said. “It was wonderful. I was really in need. It was a godsend.”
JoAnn Martin, 75, has been caring for her husband for the last three years. She heard about the caregiver support group from a friend. Her husband Gordon, 84, has Parkinson’s Disease. She said he started out with tremors and walked slowly at the initial onset of his illness. As it has progressed, he has had trouble swallowing and going to the bathroom.
“It just means so much,” Martin said, of attending the support group and sharing her concerns about the future. “I started back [to the support group] in September 2011 and in that time three women have lost their husbands. You get an advance [look at] the attitude of dealing with death.”
She said though there are support groups for patients with Parkinson’s or other illnesses, she said the Del Mar Caregiver Resource Center is the only resource she found for herself.
“To lose the funding of an agency that is so powerful at being able to reach out” would be troubling for some families, she said.
She added that she does not have a computer so it is difficult for her to find information from other sources so she relies on the support group and the Caregiver University events as a primary source of information.
Since her husband’s diagnosis, he has been hospitalized for an extended period and then released into her care on hospice. He went off hospice in April 2011 because his condition remained stable. After an attack of colitis in January, he has started physical therapy.
“I can get him up and set him in a wheelchair or set him in other chairs,” she said. “But it’s constant. I have not been able to hire help.”
Audrey can no longer meet her husband’s needs on her own. Del Mar provides funding that pays an aide to help her husband shower and gives Audrey a break from the house so she can run errands.
John Beleutz, the executive director of Health Project Centers, which oversees the Del Mar Caregiver Resource Center, sees the proposed cut as having a potentially drastic impact on the clients at the center.
“We know family caregivers are at high risk for mental and physical problems,” he said. “We try to alleviate that.”
He noted that when it comes to long-term healthcare, “it isn’t most people being in a nursing home. Most are at home being taken care of by family.”
Beleutz said the centers, created 30 years ago, have been a model nationwide.
“It’s been used in other places and it was really innovative when it came out.”
He said the centers saw a 72 percent cut to funding a few years ago, but the complete cut of state funding may lead some centers to close their doors. Others will have to drastically reduce services to stay open. He said the state funding is used to leverage other funding – from private donations, grants or the federal government – so the cut will hamper their efforts beyond the $2.9 million.
If the cuts go into effect, Beleutz foresees more caregivers moving loved ones into nursing homes.
“The annual cost of a nursing home is $74,000 a year – the national average,” he said.
Del Mar Caregiver’s center worked with 700 families last year.
“And there are many more we haven’t served, but we could if we had more funding,” he said.
Kathleen Kelly, the executive director of the National Center on Caregiving and the Family Caregiver Alliance, advocacy groups, said her agency estimates that family caregivers provide at least $8,000 in care each year. The amount of funding paid by the state is 50 cents per person.
“What’s kind of interesting is that this program was the first in the country to recognize family caregivers as the major workforce of long-term care and also to recognize and understand there are special stresses and needs of family and informal caregivers,” Kelly said. “It was signed by Jerry Brown when he was in office the first time.”
The pilot program began 30 years ago.
Kelly spoke on Feb. 23 before the California Assembly Select Committee on Disabilities in Sacramento urging legislators not to cut the funding to the program. She told legislators that more than 80 percent of the care for those who need assistance either due to a mental or physical disability are cared for by family, a friend or neighbor. There are 5.8 million informal caregivers in California, she said.
The state provides two-thirds of the funding for CRCs, but without the funding they would also lose matching funds of more than $10 million from the federal government under the Older Americans Act, which supports senior programs including the caregiver centers.
In an interview after the testimony, Kelly talked about the changing demographics in California.
“We’ve done this long-term development in a state that on a percentage basis may not have the largest percentage of older adults, but we certainly have the largest number,” she said. “The evolution is that there is less facility care and it is more community based. That is almost entirely predicated on having informal support in the community.”
Most of the caregivers are in their 40s or 50s and the majority of them are baby boomer women who are caring for parents or other aging family members, she said. Two-thirds of them work full or part time.
“They are providing 20 to 40 hours of assistance a week,” she said. “It increases if you have someone with cognitive impairments instead of just physical. They are really working two jobs.”
Like Audrey, many of the caregivers who use the Del Mar Caregiver Resource Center are supporting a loved one over the long term. Audrey’s husband was diagnosed with MS in the 1980s. He has not been able to work since a few years after he was diagnosed, so she said they did not have a lot of money in their retirement. Over the last five years, his health has declined rapidly. She described the experience as putting a frog in a pot of water and gradually bringing it up to a boil – she didn’t realize that she was feeling overwhelmed until it got to a point of crisis.
“It got to a point where it was really bad,” she said.
Kelly predicted it would be harder for caregivers without the support of the CRCs.
“If you cut stuff out at the community level, it gets much more difficult for families to juggle all these competing demands,” Kelly said.
Kelly said that the burden of caring for a loved one can be especially hard on middle income families that do not qualify for Medi-Cal.
“These are folks making under $50,000 as a household,” she said. “They can’t qualify for Medi-Cal and can’t afford to pay for services.”
The proposed 2012-13 budget can be viewed online.