BILL ANALYSIS Ó AB 1526 Page 1 Date of Hearing: April 28, 2015 ASSEMBLY COMMITTEE ON HEALTH Bonta, Chair AB 1526 (Committee on Aging and Long-Term Care) - As Introduced March 16, 2015 SUBJECT: Behavioral Risk Factor Surveillance System survey: caregiver module. SUMMARY: Requires the Department of Public Health (DPH) to include the federal Centers for Disease Control and Prevention's (CDC's) Caregiver Module in the annual Behavioral Risk Factor Surveillance System (BRFSS) survey for five years, beginning on January 1, 2016, unless another act extends before that time. EXISTING LAW: 1)Establishes, under state law, DPH to carry out various duties regarding public health programs. 2)Authorizes, under federal law, CDC to determine behaviors that place the nation at risk for threats to public health, and conduct state surveys to assess factors affecting the nation's public health, such as the BRFSS survey. FISCAL EFFECT: This bill has not yet been analyzed by a fiscal committee. COMMENTS: AB 1526 Page 2 1)PURPOSE OF THIS BILL. The author states that California currently does not have reliable, valid public health data regarding the burden of caregiving. The author states there is a growing body of evidence that reveals that providing care for a chronically ill individual can have harmful physical, mental, and emotional consequences for the caregiver. The author asserts that accurately identifying, thoroughly analyzing, and thoughtfully planning to address caregiver burden in California will improve the health outcomes for the individual in need and the caregiver, in addition to lowering the costs of healthcare and social services. The author contends when the state supports caregivers, it effectively also cares for individuals affected by various diseases, such as Alzheimer's, autism, cancer, and mental health disorders. The author concludes that conducting the survey is necessary to better assess the scope and extent of caregiving in California, and subsequently develop the most effective infrastructure and support for our state's caregivers. 2)BACKGROUND. a) Caregivers in California. California is home to the largest number of seniors in the nation and their numbers continue to expand at a rapid rate. Many within this population become dependent over time and require additional care to perform daily tasks. Oftentimes family members, friends, and others become caregivers to help support the daily needs of dependent individuals. The California Caregiver Alliance estimates that the value of services family caregivers provide at no charge was estimated to be $47 billion in California for 2009. The state has established eleven Caregiver Resource Centers throughout the state to help serve thousands of families and caregivers of those with Alzheimer's disease, stroke, Parkinson's disease, and other disorders. California was the first state in the nation to establish a statewide network of support organizations for caregivers; every resident has access to a Caregiver Resource Center in their area. b) BRFSS. According to the CDC, the BRFSS is the nation's premier system of health-related telephone surveys that AB 1526 Page 3 collect state data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services. Established in 1984 with 15 states, BRFSS now collects data in all 50 states as well as the District of Columbia and three U.S. territories. BRFSS typically completes over 400,000 adult interviews each year, making it the largest continuously conducted health survey system in the world. BRFSS collects state data about U.S. residents regarding their health-related risk behaviors and events, chronic health conditions, and use of preventive services. BRFSS also collects data on important emerging health issues such as vaccine shortage and influenza-like illness. Since September 2009, federal, state, and local health agencies have used BRFSS to monitor the prevalence rates of influenza-like illness to help with pandemic planning. Interviewers administer the annual BRFSS surveys continuously through the year. By collecting behavioral health risk data at the state and local level, BRFSS has become a powerful tool for targeting and building health promotion activities. As a result, BRFSS users have increasingly demanded more data and asked for more questions on the survey. Currently, there is a wide sponsorship of the BRFSS survey, including most divisions in the CDC National Center for Chronic Disease Prevention and Health Promotion; other CDC centers; and federal agencies, such as the Health Resources and Services Administration, Administration on Aging, Department of Veterans Affairs, and Substance Abuse and Mental Health Services Administration. c) BRFSS structure. The BRFSS questionnaire is divided into three parts: i) the core component; ii) optional modules; and, iii) state-added questions. The core component includes queries about current health-related perceptions, conditions, and behaviors (e.g., health AB 1526 Page 4 status, health care access, alcohol consumption, tobacco use, disability, and HIV/AIDS risks), as well as demographic questions. The optional modules contain sets of questions on specific topics, such as excess sun exposure, cancer survivorship, mental illness, and stigma, which states elect to use on their questionnaires depending on their individual needs. In 2013, 22 optional modules were supported by the BRFSS; California chose to complete the modules on Childhood Asthma Prevalence, Health Care Access, and Random Child Selection. The state-added questions are also optional for completion. Individual states develop or acquire these questions and add them to their BRFSS questionnaires. CDC neither edits nor evaluates these questions. d) Caregiver optional module. In 2009, the CDC offered the Caregiver optional module as part of the BRFSS. The survey contained nine questions to determine basic demographic information about the individual receiving care; the relationship of the caregiver to the individual; the length of time the caregiver had been providing care; the major health problem with the individual; in what areas the individual needs the most assistance; the amount of time per week the caregiver provides care; the difficulties faced by the caregiver; and whether or not the individual receiving care has experienced changes in thinking and remembering. Illinois, Louisiana, and the District of Columbia opted to use the Caregiver Module in 2009. 3)SUPPORT. The Alzheimer's Association, this sponsor of this bill, states that prudent planning to create the most efficient and effective infrastructure to support caregivers requires high-level, evidence-based data such as the BRFSS under the appropriate jurisdiction of DPH. The sponsor asserts that as the state's population ages and demographics shift, the pool of available family caregivers to assist individuals is diminishing, and will significantly impact public health programs such as Medi-Cal and other state and federally funded health, education and human services. The sponsor contends that greater data on the scope of caregiving AB 1526 Page 5 within California will help the state better prepare support systems for caregivers in the future. The Association of California Caregiver Resource Centers support the bill, stating California's health and human service programs benefit from unpaid, informal caregivers who provide direct services to family members and friends who need assistance with activities of daily living. The support asserts the state's economy relies on informal caregivers to share the cost of health and human service programs, yet there is no formal mechanism to effectively evaluate the impact of caregiving statewide. Support concludes the inclusion of the Caregiver Module within the 2016 BRFSS survey will help collect reliable data for future use by the Legislature and stakeholders on this important population. 4)RELATED LEGISLATION. ACR 38 (Brown) establishes the California Task Force on Family Caregiving, to collaborate with a broad range of stakeholders to examine resources available to caregivers and make legislative recommendations regarding the development of an Internet Website containing resources for caregivers, the enhancement of outreach and education efforts, and the development of a caregiver screening and assessment tool. The task force would be required to submit an interim report to the Legislature no later than January 1, 2017, and a final report no later than July 1, 2018. 5)PREVIOUS LEGISLATION. AB 1744 (Brown) of 2014 would have required CDA, until January 1, 2018, to establish a blue-ribbon task force comprised of at least 13 members to make recommendations to improve services for unpaid and family caregivers in California. AB 1744 was vetoed by the Governor. The Governor's veto message stated the legislation was not necessary because there is already ample data and evidence from existing sources. 6)DOUBLE REFERRAL. This bill is double referred; it passed out of the Assembly Committee on Aging and Long-term Care with a vote of 6-0 on April 21, 2015. AB 1526 Page 6 REGISTERED SUPPORT / OPPOSITION: Support Alzheimer's Association (sponsor) Association of California Caregiver Resource Centers Opposition None on file. Analysis Prepared by: An-Chi Tsou / HEALTH / (916) 319-2097