BILL ANALYSIS                                                                                                                                                                                                    �



                                                                  AB 1744
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          Date of Hearing:  April 1, 2014

                   ASSEMBLY COMMITTEE ON AGING AND LONG-TERM CARE
                                Mariko Yamada, Chair
                    AB 1744 (Brown) - As Amended:  March 20, 2014
           
          SUBJECT  :  Older Californians Act; Blue Ribbon Committee on  
          Family Caregiving.

           SUMMARY  :  Establishes the California Caregiver Act of 2014.   
          Specifically,  this bill  :  

           1) Makes legislative findings and declarations as follows:

             a.   That a caregiver can be any relative, partner, friend,  
               or neighbor who has a significant relationship with, and  
               who provides a broad range of assistance to, an older  
               person or an adult with a chronic or disabling condition.

             b.   At present, there is no complete inventory of caregiving  
               programs available to Californians performing unpaid  
               caregiving services for an aging or disabled family member,  
               friend, or neighbor.

             c.   Rising demand and shrinking families that provide  
               caregiving support suggest that California needs a  
               comprehensive person-and family-centered policy for  
               long-term services and support systems that would better  
               serve the needs of older persons with disabilities, support  
               family and friends in their caregiving roles, and promote  
               greater efficiencies in public spending.

             d.   California ranked 30th out of 50 states and the District  
               of Columbia on the 2011 State Long-Term Services and  
               Supports Scorecard sponsored by the SCAN Foundation,  
               American Association of Retired Persons (AARP), and the  
               Commonwealth Fund.

             e.   Family support is a key driver to remain in one's home  
               and community, but it comes at substantial costs to the  
               caregivers, their families, and to society.  If family  
               caregivers were no longer available, the economic cost to  
               California's health care and long-term services and support  
               systems would increase astronomically.









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             f.   In 2009, approximately 4 million family caregivers in  
               California provided care to an adult with limitations in  
               daily activities at any given point in time, and over 5.8  
               million provided care at some time during the year.

             g.   In 2009, California's family caregivers provided an  
               estimated 3,850,000 hours of unpaid labor caring for their  
               loved ones. The estimated economic value of their unpaid  
               contributions was approximately $47 billion.

             h.   In 2009, 59% of all family caregivers were employed full  
               or part time.  Family caregivers typically spend 20 hours a  
               week caring for a family member who needs help with  
               bathing, dressing, and other kinds of personal care, as  
               well as household tasks such as shopping and managing  
               finances.

             i.   Nationally, 46% of family caregivers performed medical  
               or nursing tasks for care recipients with multiple chronic  
               physical and cognitive conditions.  More than  
               three-quarters of family caregivers who provided medical or  
               nursing tasks were managing medications, including  
               administering intravenous fluids and injections.

             j.   Almost one-half of family caregivers were administering  
               five to nine prescription medications a day, and one in  
               five was helping with 10 or more prescription medications a  
               day. Yet, 61% of these caregivers reported that they  
               trained themselves to perform medication management.

             aa.  Only 31% of caregivers reported being visited at home by  
               a health care professional. In addition, 27% of caregivers  
               report that they have no additional assistance from a  
               family member, health care professional, or home health  
               aide.

             bb.  Nationally, more than 8 in 10 caregivers are over the  
               age of 50.  Family caregivers are aging and are  
               increasingly from diverse, social, racial, ethnic, and  
               political backgrounds.

             cc.  For many families in the midst of caregiving, there is  
               deep worry and concern about the quality of care and  
               quality of life.









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             dd.  Families do not know who to call or where to go to get  
               the right kind of affordable help when they need it.

             ee.  In just 13 years, as the baby boomers age into their  
               80s, the decline in the caregiver support ratio is  
               projected to shift from a slow decline to a free fall in  
               California.

             ff.  To avoid bankrupting our health and social service  
               systems serving the elderly and persons with disabilities,  
               it is imperative that California prepare by identifying  
               strategies that will promote appropriate, person-centered  
               services for families struggling with providing care to a  
               family member.

             gg.  It is in the interest of the state to better serve the  
               approximately 4,000,000 families statewide who are  
               currently struggling to care for an aging or disabled  
               family member, many of whom are also in the workforce.

             hh.  There is an immense need for caregiving resources and  
               services as California's population ages and as California  
               becomes increasingly diverse.

          1)Directs the California Department of Aging to convene a  
            blue-ribbon panel on family caregiving and long-term services  
            and supports, chaired jointly by the Director of the  
            Department of Aging (or his or her designee) and the AARP;  
            made up of 12 individuals who serve at the pleasure of the  
            director and the AARP.  Except for all decisions regarding the  
            expenditure of state funds, decisions of the body would be  
            joint decisions.

             Membership  :  
              a.   One member shall have experience in the field of  
               academic research on caregiving;
             b.   One member shall be a family caregiver of an adult with  
               a chronic or disabling condition;
             c.   One member shall be a representative of the mental  
               health community;
             d.   One member shall be a representative of the Family  
               Caregiver Resource Centers;
             e.   One member shall be a representative of the National  
               Alzheimer's Association;
             f.   One member shall be a representative of an organization  








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               that provides community-based adult services;
             g.   One member shall be a representative of an organization  
               that provides an adult day program;
             h.   One member shall be a representative of an organization  
               that provides services to caregivers;
             i.   One member shall be a representative of an unpaid or  
               family or family caregiver consumer organization;
             j.   One member shall be a culturally and linguistically  
               diverse caregiver;
             aa.  One member shall be an adult with a chronic or disabling  
               condition who receives care from an unpaid caregiver or  
               family member.
           
          1)The Blue Ribbon Panel would be required to  :  

              a.   Review current policies and practices of state, local  
               and community programs available to caregivers of adults  
               with chronic disabling conditions, and consider how the  
               needs of family caregivers should be assessed and addressed  
               so that they may avoid overburdening themselves, and remain  
               in their caregiving role.

             b.   Consider other state plans, including State Olmstead  
               plan, the Long-Range Strategic Plan on Aging, the State  
               Plan for Alzheimer's disease, and the State Plan on Aging.

             c.   Compile and inventory resources available to family  
               caregivers.

             d.   Determine gaps in services to family caregivers and  
               identify barriers to participation in current programs.

             e.   Consider cultural and linguistic factors that impact  
               caregivers and care recipients who are from diverse  
               backgrounds.

             f.   Consult with a broad range of stakeholders, including  
               but not limited to people diagnosed with Alzheimer's,  
               adults with disabling and chronic conditions, family  
               caregivers, community-based and institutional providers,  
               caregiving researchers and academicians, formal caregivers,  
               the caregiver resource centers, the California commission  
               on aging and other state entities.

             g.   Solicit testimony on the needs of family caregivers  








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               including the designation of caregivers, training, respite  
               services, medical leave policies, delegation of tasks to  
               non-medical aides, and other policies.

             h.   Identify best practice in other states.

             i.   Explore expanding those best practices in caregiving  
               programs to populations that are not currently targeted.

             j.   Develop at least three legislative recommendations to  
               improve the provisions of services for unpaid and family  
               caregivers in California to address the following:

                  i.        Community-based support for California's  
                    diverse populations of caregivers for adults with  
                    chronic or disabling conditions;

                  ii.       Choices for care and residence for persons  
                    with Alzheimer's disease and their families;

                  iii.      The family caregiving "competencies" of health  
                    care professionals.  

             aa.  Prepare a report to the legislature on or before July of  
               2016 in digital format.

             bb.  Provide ongoing advice and assistance to the department  
               and the legislature as to the needs of unpaid and relative  
               caregivers.

          1)Members shall serve without compensation but shall receive  
            reimbursement for travel and other expenses incurred in the  
            performance of their official duties, and meet publicly  
            every-other month.
           
          EXISTING LAW:  

          1)Establishes the Older Californians Act (OCA) and assures older  
            adults have equal access to programs and services provided  
            through the OCA regardless of physical or mental disabilities,  
            language barriers, cultural or social isolation, including  
            that caused by actual or perceived racial and ethnic status,  
            including, but not limited to, African-American, Hispanic,  
            American Indian, and Asian American, ancestry, national  
            origin, religion, sex, gender identity, marital status,  








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            familial status, sexual orientation, or by association with a  
            person or persons with one or more of these actual or  
            perceived characteristics, that restrict an individual's  
            ability to perform normal daily tasks or that threaten his or  
            her capacity to live independently.

          2)Establishes the California Department of Aging (CDA) to  
            provide leadership to the area agencies on aging in developing  
            systems of home-and community-based services that maintain  
            individuals in their own homes or least restrictive, homelike  
            environments.

          3)Establishes 33 area agencies on aging to receive federal,  
            state, and local funds to contract with local organizations  
            for service to seniors. There are 33 area agencies on aging  
            designated by the CDA as the local Planning Services Agencies

          4)Establishes the Title IIIE program, also known as the National  
            Family Caregiver Support Program (NFCSP), established in 2000,  
            to coordinate local community-service systems for assisting  
            caregivers of seniors. Services are available to family and  
            other unpaid caregivers supporting older individuals, as well  
            as grandparents and older relatives caring for children.  Each  
            AAA is responsible for determining the array of services,  
            including caregiver information, assistance in gaining access  
            to services, counseling and training support, temporary  
            respite, and limited supplemental services to complement the  
            care provided by caregivers. Services are provided directly by  
            AAA staff, or through partnerships with other public or  
            private agencies.

          5)Establishes Caregiver Resource Centers to deliver services to  
            and advocate for caregivers of cognitively impaired adults, by  
            offering specialized information on chronic and disabling  
            conditions and diseases, aging, caregiving issues, community  
            resources and family consultation.  Professional staff work  
            with families and caregivers to provide support, alleviate  
            stress, examine options, and enable them to make decisions  
            related to the care, respite, and counseling in legal and  
            financial aid.

           FISCAL EFFECT  :  Unknown

           COMMENTS  :  









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           Author's Statement  :  "This bill is relevant to California's  
          current need, through a collaborative joint study committee, to  
          inventory, assess and report on the status of existing caregiver  
          programs.  Caregivers come from a wide range of economic,  
          social, racial and ethnic backgrounds. Research by the AARP  
          Public Policy Institute indicates that 27% of caregivers have no  
          additional assistance from family members, a healthcare  
          professional or a home health aide. Only 31% report having been  
          visited by a healthcare professional in the home.  For many  
          families in the midst of caregiving, there is deep worry and  
          concern about the quality of care and quality of life of the  
          relative for whom they are providing care. Many caregivers do  
          not know who to call or where to go to get the right kind of  
          affordable help when they need it.  This bill will provide  
          family caregivers, their loved ones and our State invaluable  
          data and information as we move forward in addressing family  
          caregiving and long-term support service issues."

           Background  :  Families are the major provider of long-term care,  
          but research has shown that caregiving exacts a heavy emotional,  
          physical and financial toll.  Many caregivers who work and  
          provide care experience conflicts between their  
          responsibilities. Twenty two percent of caregivers are assisting  
          two individuals, while eight percent are caring for three or  
          more. Almost half of all caregivers are over age 50, making them  
          more vulnerable to a decline in their own health, and one-third  
          describe their own health as fair to poor.  
           
          Women make up the majority of the unpaid caregiver workforce,  
          often interrupting work careers to take on the burden of caring  
          for a relative.  Caregiving women face uncertain economic  
          futures due to breaks from employment and the corresponding  
          reductions to retirement plans and the Social Security system.

          At a joint Hearing of Assembly Committees on Aging and Long-Term  
          Care and the Assembly Committee on Human Services in 2011, the  
          committees heard testimony about caregiving in California.   
          Given the demographics confronting California, it would come as  
          no surprise that most people will become a caregiver at some  
          point during their lives.  According to the Family Caregiver  
          Alliance, caregivers are daughters, wives, husbands, sons,  
          grandchildren, nieces, nephews, partners and friends.  While  
          some people receive care from paid caregivers, most rely on  
          unpaid assistance from families, friends and neighbors.  The  
          National Alliance on Caregiving and AARP report "Caregiving in  








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          the United States, 2009," estimates 31.2% of households in the  
          U.S. had at least one person who served as an unpaid family  
          caregiver during the course of the year.  At any one time the  
          report estimates 37.3 million people are providing care; 66% are  
          women and 34% are men.  The typical family caregiver is a 49  
          year-old woman caring for her widowed 69 year-old mother who  
          does not live with her.  She is married and employed.  1.4  
          million children ages 8 to 18 provide care for an adult  
          relative; 72% are caring for a parent or grandparent; and 64%  
          live in the same household as their care recipient.  The same  
          report estimates the number of caregivers in California at any  
          given time at 4.0 million, with an estimated 5.88 million people  
          serving as caregivers during the course of a year.

           What is Caregiving  :  Caregivers can be paid or unpaid.   
          Caregivers support the needs of dependent individuals in a  
          variety of ways, performing a range of tasks, including  
          companionship, light house-keeping, meal preparation, and  
          personal care tasks.  More complex and sensitive tasks include  
          money management, medication management, communicating with  
          health professionals, and coordinating care.  The Family  
          Caregiver Alliance finds that many family members and friends do  
          not consider such assistance and care "caregiving" - they are  
          just doing what comes naturally to them: taking care of someone  
          they love.  But that care may be required for months or years,  
          and may take an emotional, physical and financial toll on  
          caregiving families.  

          The value of the services family caregivers provide for "free,"  
          when caring, was estimated to be $450 billion in 2009.  The  
          estimated value of unpaid care in California is $47 billion,  
          accounting for over 3.8 billion hours of care at $12.17, the  
          average caregiver wage in 2009.  On the personal side, long term  
          caregiving has significant financial consequences for  
          caregivers, particularly for women.  Informal caregivers  
          personally lose about $659,139 over a lifetime: $25,494 in  
          Social Security benefits; $67,202 in pension benefits; and  
          $566,443 in forgone wages.  Caregivers face the loss of income  
          of the care recipient, loss of their own income if they reduce  
          their work hours or leave their jobs, loss of employer-based  
          medical benefits, shrinking of savings to pay caregiving costs,  
          and a threat to their retirement income due to fewer  
          contributions to pensions and other retirement vehicles.  

           Discussion  :








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          AB 1744 would amend the Older Californians Act to require the  
          California Department of Aging to convene a joint Blue Ribbon  
          Task Force on family caregiving, and long-term supports and  
          services.  The proposed Blue Ribbon Task Force committee would  
          be co-chaired by the AARP and the director of the CDA.  The Task  
          force's joint study mandates would be multi-faceted:

          1)To consult a range of stakeholders, including people living  
            with Alzheimer's disease, people living with chronic and  
            disabling conditions, family caregiver, service providers,  
            researchers, formal caregivers, Caregiver Resource Centers,  
            and the California Commission on Aging, among others.  

          2)To solicit testimony on the needs of family caregivers,  
            including the designation of caregivers, training, respite  
            services, medical leave policies, delegation of tasks to  
            non-medical aides, and other policies.

          3)To identify best practices in California as well as other  
            states, and explore ways to replicate them, and expand them to  
            populations not currently served.

          The Blue Ribbon Panel would prepare a report to the Legislature  
          by July 1, 2016 and provide ongoing advice to the department and  
          the legislature.  

           Questions  :  
           
          1.   Is it the intent of the author to compel the panel to  
               produce three legislative initiatives separate from the  
               report that is due to the legislature on July 1, 2016?

          2.   Given the broad cultural representation of people in  
               California, besides reviewing best practices within the  
               state of California and other states, does it serve the  
               residents of the state to assess best practices developed  
               in other countries as well?
           
          Proposed Amendments  :  

           Amendment #1:

          On Page 2, line 34, replace "3,850,000" with "3,850,000,000"

          Amendment #2:








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          On page 4, lines 20-28, amend as follows:

          9104. (a) The department shall convene a blue-ribbon panel on  
          family caregiving and long-term services and supports. The panel  
          shall be jointly chaired by the director of the department or  
          his or her designee and a representative  elected by the members  
          of the blue-ribbon panel.   of AARP California, except that all   
           All  decisions regarding the expenditure of state funds shall be  
          made by the department representative. The panel shall  serve at  
          the pleasure of the department and  be comprised of at least 12  
          members , each of whom shall be representative of at least one of  
          the following:    who shall serve at the pleasure of the  
          department, and AARP, and shall include all of the following:  
           
           Amendment #3: On Page 5, line 5, amend as follows:

          (10) One  representative with experience and knowledge of the  
          specific needs of  culturally and linguistically diverse  
           caregivers, and the specific challenges of delivering services  
          to family caregivers challenged by cultural or linguistic  
          barriers.   caregiver.  

           REGISTERED SUPPORT / OPPOSITION  :   

           Support  :  
           American Association of Retired Persons (AARP) California  
          (Sponsor)
          Alzheimer's Association
          American Federation of State, County and Municipal Employees  
          (AFSCME), AFL-CIO
          California Assisted Living Association (CALA)
          California Association for Health Services at Home (CAHSAH) -  
          Support if Amended
          California Association of Area Agencies on Aging (C4A)
          California Caregiver Resource Centers
          California Commission on Aging
          Congress of California Seniors
          Family Caregiver Alliance
          Pacific Clinics
          United Domestic Workers of America (UDW) AFSCME Local 3930

           Opposition  :  
           None on file.
           








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          Analysis Prepared by  :    Robert MacLaughlin / AGING & L.T.C. /  
          (916) 319-3990