Testimony for the California Assembly Select Committee on Disabilities

February 23, 2012

By Kathleen Kelly, MPA, Executive Director, Family Caregiver Alliance on behalf of the 11 Caregiver Resource Centers and 5.8 million family caregivers in California.

Good afternoon, Chairman Chesbro, members of the committee and distinguished panel members. Thank you for allowing me to speak about the California Caregiver Resource Center system that is now at risk for elimination within the Governor’s 2013 budget.

California has been considered a leading state in developing caregiver support services. We were the first state in the country to pass state legislation to identify family caregivers as the main provider of care and as such, deserving of specialized support in 1980. This grew into the California Caregiver Resource Centers that over the years has served hundreds of thousands of caregivers in the state. In the past 30 years since the passage of that landmark legislation, family caregivers have been increasingly recognized as valuable assets in long term care and have been the focus of the research, policy and media communities.

Indeed, informal caregivers – family members, friends, neighbors – form the silent army of care providers who contribute over 80% of the care in the state to those who need assistance. Without the 5.8 million informal caregivers, our state would be overwhelmed. It is often said that the only thing preventing a placement in a nursing home for an older parent is the presence of an adult daughter. It is a very true statement: the presence of an informal caregiver during times of advanced illness, that is, in the last six months of life, means a significant cost savings to Medicare.

The core CRC services include intake, uniform assessment, family consultation, legal information and advice, family and professional education, counseling, respite, support groups all guided by three principles: the family caregiver is the client; family caregivers are the care managers for their loved ones; and the focus is broad across all adult-onset brain impairments, age groups and income levels.The Caregiver Resource Centers provide critical services to all California caregivers regardless of age, diagnosis, income or where they live.

Now the Statewide System of Caregiver Resource Centers are Eliminated in the Governor’s Budget for 2013.

What would elimination of the CRC system mean?

Without CRC support and guidance in care planning and service linking, many working, middle-income family caregivers will be impacted.

Removal of CRC funding would result in a loss of matching funds for over $10 million in federal dollars under the Older Americans Act.

Loss of CRCs means the loss of community based eldercare resources for small and medium sized businesses that directly reduce employee costs in health and absenteeism.

Less evidence-based and model interventions targeting caregivers at high risk of health and mental health problems as well as high quality skill-building classes for direct care education.

What are the key program facts?

The typical profile of a CRC client is a baby boomer woman who juggles work and caring for an older relative – most likely one or both of her parents or in-laws.

CRC system strengthens California economy by helping working families who care for a loved one. Two-thirds of CRC caregivers hold down full or part-time jobs.

CRCs uniformly assess and connect over 12,000 caregivers to specialized consultation, direct care training, legal and financial counseling, short term skill building classes, respite, education and linkage to community services per year.

Family caregivers contribute an average of $8,000 of unpaid services and support to their relative – an aggregate total of over 47 billion dollars per year.

Currently California provides $2.9 million in the budget for the CRC system – an average expenditure of 50 cents for every 5.8 million caregivers in the state.

Medicare and Medi-Cal do not provide these services.

Historical Overview
In 1980, California became the first state in the nation to sign into law a bill that established a pilot project of services – emotional support, care planning assistance, respite care, education and legal consultation – to caregivers of adults with brain-impairments in the San Francisco Bay Area. It was sponsored by then-Assemblyman Art Agnos and signed into law by then-Governor Jerry Brown.

In 1984, Assembly Agnos again sponsored legislation – The Comprehensive Act for Family Caregivers of Brain-Impaired Adults – signed into law by Governor George Deukmejian which established the statewide Caregiver Resource Center (CRC) system. The CRC system serves caregivers of adults with Alzheimer’s disease, stroke, Parkinson’s, traumatic brain injury, Huntington’s disease and other adult-onset cognitive disorders with a variety of service and has been administered by the California Department of Mental Health.

The core CRC services include intake, uniform assessment, family consultation, legal information and advice, family and professional education, counseling, respite, support groups all guided by three principles: the family caregiver is the client; family caregivers are the care managers for their loved ones; and the focus is broad across all adult-onset brain impairments, age groups and income levels.

The CRC system pioneered many innovative programs and diffused evidence-based and model programs throughout the system including psycho-educational and skill-building interventions, web-based caregiver support, online groups and classes and family meetings. The CRC system had consistent, peer-reviewed consumer information, statewide staff development and data analysis functions.

Data from the client assessments were routinely reported to the legislature and back to the CRC’s to use in modifying practices at the local levels. Data analysis about caregivers could be sliced by geographic region, diagnosis of the care receiver, ethnicity of the family or by a myriad of variables for practical use by policy makers, researchers and those in the field.

Unfortunately, the system development efforts, data collection, reporting functions and consumer information dissemination were eliminated with cuts to the Statewide Resource Consultant to the California Department of Mental Health four years ago. Later, budget cuts to the services programs left the CRC system with a current appropriation of $2.9 million from a high of $11.5 million in 2008.

National Family Caregiver Support Program (NFCSP)
In 1999, staff from then-Vice President Al Gore contacted a handful of states for advice and guidance about formulating a federal response to supporting family caregivers. California was one of those states contacted and Family Caregiver Alliance was asked to provide technical assistance in drafting the legislation. Vice President Gore made the announcement of the legislation in Sacramento during the inauguration of Governor Grey Davis. Title IIIE of the Older Americans Act was the first new program in years for the Administration on Aging and Assistant Secretary Jeanette Takamura oversaw the initial implementation efforts.

The NFCSP serves caregivers of those adults over sixty unless the care recipient has Alzheimer’s disease or a related dementia with five main services:

  • information to caregivers about available services;
  • assistance to caregivers in gaining access to the services;
  • individual counseling, organization of support groups, and caregiver training;
  • respite; and
  • supplemental services, on a limited basis.

There are also grandparents caring for grandchildren and Native American caregivers components under the NFCSP with slightly different service categories. The administration of the NFCSP is through the State Unit on Aging and Area Agencies on Aging. There is wide variety in program implementation across the states. In California, the Area Agencies on Aging administer the NFCSP typically with more than one contractor in an area. The NFCSP is undergoing the first national evaluation of the program but the project has not been completed and no data is available at this time.

The CRCs have provided the federal match on the Title IIIE dollars.

The California Department of Aging, the Area Agencies on Aging or the counties have never contributed the federal requirement of 33% match for Title IIIE services.

What Have We Learned in the Past Thirty Years
The caregiver profile has changed from an older spouse to now, a baby boomer adult child. Most often, our callers for services are women in their forties and fifties who are caring for their parents or in-laws. These are women in their peak earning years and who are planning for their own retirements. Two-thirds of caregivers in this category are also in the workforce. The average caregiver spends 20 hours a week providing care – the equivalent of a part-time job. And this number is higher if the person they are providing assistance to is cognitively impaired as a result of Alzheimer’s disease or related dementia, stroke, Parkinson’s, brain injury or other cause.

At this point, everyone has a story about caregiving. It is an equal opportunity employer crossing every boundary: financial, geographical, ethnic, educational and family relationship or partnerships.

And the impacts are great even in the best of families. They include increased stress over prolonged periods impacting health and mental health, impact on work and productivity, impact on personal lives with loss of leisure and activities of personal satisfaction to the caregiver. It is not a trivial matter: there are higher rates of suicide, depression, onset of chronic health conditions, substance abuse and loss of income for caregivers overall.

But we also know that specific interventions work to alleviate a number of these problems that can both improve the quality of life for the caregiver and for those for whom they care.

Now the lifeline of the Caregiver Resource Center system is being pulled away from family caregivers at the exact time when demand for long term assistance and supports are increasing.

Now is the time to stop the Caregiver Resource Center system in the state from elimination. Now is the time to support the 5.8 million caregivers in the state and include the $2.9 million in the budget.

Testimony submitted by:

Kathleen Kelly, MPA, Executive Director
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Ste 750
San Francisco CA 94103
415.434.3388

Editor’s note: The 11 Caregiver Resource Centers started a petition against the cuts. To view or sign the petition, visit this link: “Don’t balance California’s budget on the backs of family caregivers”

2 comments to Testimony for the California Assembly Select Committee on Disabilities

  • There is another hidden, silent and vulnerable population among caregiving families which is yet to be addressed…child caregivers who often, without support, sacrifice their education, childhood, health and well-being to care for family members or to assist others in their family in the provision of that care…kids pick up the pieces, rush home from school and help when mom is still and work and grandpa needs assistance. Or when the single mom is the one who is ill. When caregiving youth drop out of school, there is also an economic effect – not only for them but also for the economy and the government. It’s time to pay attention and support these more than 1.3 million children ages 8-18 years who are also a critical component of the long term care delivery system!

  • [...] testified at the California Assembly Select Committee on Disabilities in Sacramento.  You can read her testimony here  and a story about the hearing on HealthyCal [...]

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