BILL ANALYSIS                                                                                                                                                                                                    �






                                  SENATE HUMAN
                               SERVICES COMMITTEE
                          Senator Leland Y. Yee, Chair


          BILL NO:       SB 555                                       
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          AUTHOR:        Correa                                       
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          VERSION:       April 1, 2013
          HEARING DATE:  April 9, 2013                                
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          FISCAL:        Yes                                          
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          CONSULTANT:    Mareva Brown                                
                                        

                                     SUBJECT
                                         
                   Developmental services: regional centers: 
           individual program plans and individualized family service  
                                     plans

                                     SUMMARY  

          This bill would require that an individual program plan  
          (IPP) or an individualized family service plan (IFSP) be  
          designed to meet the cultural preferences, values, and  
          lifestyle of the consumer and the consumer's family, and be  
          provided in their native language, as defined; requires the  
          Department of Developmental Services (DDS) and the regional  
          centers to ensure that consumers and their families receive  
          culturally and linguistically competent information,  
          including written documents, about the IPP and the IFSP, as  
          specified; requires each regional center to make this  
          information available to the public in appropriate  
          languages, and on the DDS and regional center Internet Web  
          sites. This bill also would require all communication with  
          the consumer and his or her family, pursuant to intake or  
          assessment, to be in their native language.

                                     ABSTRACT  


                                                         Continued---




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           Existing law
           
             1)   Establishes the Lanterman Developmental  
               Disabilities Services Act, which states  
                that California is responsible for providing an array  
               of services and supports sufficiently complete to meet  
               the needs and choices of each person with  
               developmental disabilities, regardless of age or  
               degree of disability, and at each stage of life and to  
               support their integration into the mainstream life of  
               the community. (WIC 4500, et seq.)  

              2)   Establishes a system of nonprofit regional centers  
               to provide fixed points of contact in the community  
               for all persons with developmental disabilities and  
               their families, and to coordinate services and  
               supports best suited to them throughout their  
               lifetime. (WIC 4620)  

              3)   Establishes that an infant or toddler under age 3  
               who is eligible for regional center services shall  
               have an individualized family service plan (IFSP) to  
               direct services, as specified, and defines the types  
               of services, supports and staffing that should be  
               considered when creating the plan. (WIC 95020)

             4)   Defines various terms used in Welfare and  
               Institutions Code relating to individuals served in  
               the Developmental Disabilities system, and the  
               services provided. (WIC 4512)  
                 
              5)   Requires all regional centers to notify consumers  
               and families of the availability of services in  
               English and such other languages as may be appropriate  
               to the service area, provide outreach services in  
               areas with a high incidence of developmental  
               disabilities, and identify persons who may need  
               services. (WIC 4641)

             6)   Identifies specific guidelines and timelines for  
               conducting an assessment of an individual who is  
               identified as potentially needing services and  
               supports. (WIC 4642)

             7)   Establishes an individual program plan (IPP) and  





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               defines that planning process as the vehicle to ensure  
               that services and supports are customized to meet the  
               needs of consumers who are served by regional centers.  
               (WIC 4512)

             8)   Requires that the planning processes to create an  
               IPP include:

                  a.        A statement of the individual's goals and  
                    objectives, a schedule of the type and nature of  
                    services to be provided and other information and  
                    considerations, as specified.
                  b.        Review and modification, as necessary, by  
                    the regional center's planning team no less  
                    frequently than every three years.
                  c.        Statewide training and review of the IPP  
                    plan creation, as specified. (WIC 4646.5)

             9)   Requires that, in order to achieve the goals and  
               objectives in an individual's IPP, a regional center  
               must provide numerous services and supports, as  
               specified. (WIC 4648)

             10)  Requires that every state agency which serves a  
               substantial number of non-English-speaking people and  
               which provides materials in English explaining  
               services shall also provide the same type of materials  
               in any non-English language spoken by a substantial  
               number of the public served by the agency, as  
               specified. (GOV 7295.2)

             11)   Defines a "substantial number of  
               non-English-speaking people" as members of a group who  
               either do not speak English, or who are unable to  
               effectively communicate in English because it is not  
               their native language, and who comprise 5 percent or  
               more of the people served by any local office or  
               facility of a state agency. (GOV 7296.2)

             12)  Establishes legislative intent that the preferred  
               objective for children who have developmental  
               disabilities is to remain at home with their families  
               and defines regional center goals toward that  
               objective.  (WIC 4685)
                





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          This bill
           
             1)   Declares the following legislative findings:

                  a.        California's diverse language and ethnic  
                    communities account for about 60 percent of its  
                    population. The number of people in the United  
                    States who do not speak English as their native  
                    language has grown 140 percent over the past  
                    three decades. In California, about 40 percent of  
                    Californians speak a language other than English  
                    at home, and the number of individuals whose  
                    first language is not English is rapidly growing.

                  b.        Health disparities can result in  
                    significant health, social, and economic  
                    consequences. Culturally and linguistically  
                    competent health care services can assist in  
                    achieving health equity. Health literacy plays a  
                    central role in promoting quality of life, health  
                    development, and health behaviors across all  
                    groups and life stages.

                  c.        To address any disparities in the  
                    regional center system, it is the intent of the  
                    Legislature that the State Department of  
                    Developmental Services and regional centers  
                    ensure that all consumers and their families  
                    receive culturally and linguistically competent  
                    information, including written documents, about  
                    the IPP and IFSP processes and procedures. It is  
                    also the intent of the Legislature that each  
                    regional center make available culturally and  
                    linguistically competent information to  
                    individuals living in its geographic catchment  
                    area about regional center services, processes,  
                    and procedures.

             2)   Requires that ISFPs and the provision of services  
               and supports be designed to meet the cultural  
               preferences, values, and lifestyle of the infant or  
               toddler and his or her family, and shall be provided  
               in their native language. 

             3)   Requires that a copy of the IFSP be provided in the  





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               family's native language.

             4)   Adds to the list of definitions related to the DDS  
               system the following:  "Native language" means the  
               language normally used by the individual and, when  
               appropriate, his or her parent, legal guardian or  
               conservator, or authorized representative.

             5)   Requires DDS and the regional centers to ensure  
               that consumers and their families receive culturally  
               and linguistically competent information, including  
               written documents, about the IPP and IFSP, as  
               specified. 

             6)   Requires that each regional center make available  
               to the public information about regional center  
               services, processes, and procedures and that they do  
               so under Government Code standards that specify  
               dissemination of materials to non-English speaking  
               residents, including ensuring that materials are  
               written in plain, straightforward language and in an  
               easily readable style. The materials provided by the  
               department and the regional centers shall also be  
               available on the department's and the regional  
               centers' Internet Web sites.

             7)   Adds to the list of required elements of a regional  
               center assessment the requirement that all  
               communication with the consumer and his family be  
               conducted in their native language.

             8)   Requires that the creation of an IPP plan be  
               designed to meet the cultural preferences, values, and  
               lifestyle of the individual and, when appropriate, his  
               or her parent, legal guardian or conservator, or  
               authorized representative, and shall be provided in  
               their native language. 

             9)   Requires that the IPP planning process, as  
               specified, be conducted in a manner that meets the  
               cultural preferences, values, lifestyle, and native  
               language of the individual and, when appropriate, his  
               or her parent, legal guardian or conservator, or  
               authorized representative.






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             10)  Requires a regional center to ensure that IPP and  
               the provision of services and supports, as specified  
               in WIC 4648, be designed to meet the cultural  
               preferences, values, and lifestyle of the individual  
               and, when appropriate, his or her parent, legal  
               guardian or conservator, or authorized representative,  
               and are provided in their native language.

             11)  Expands existing legislative intent language  
               identifying as a priority that children live at home  
               and defines regional center objectives to meet that  
               priority the intent that a family's native language be  
               considered when providing supports.

                                  FISCAL IMPACT  

          This bill has not been analyzed by a fiscal committee.

                            BACKGROUND AND DISCUSSION  

           Purpose of the bill

           This bill is part of a package that arose from a hearing in  
          2012 by the Senate Select Committee on Autism & Related  
          Disorders that focused on disparities in services in  
          underserved communities.

          The author states that for people with developmental  
          disabilities, health disparities can result in significant  
          health, social, and economic consequences. California's  
          diverse language and ethnic communities account for about  
          60% of its population. Ethnic disparities exist within the  
          regional center system.  Consumers and family members who  
          are limited English proficient  have the right to get  
          culturally and linguistically competent information about  
          the  Individual Program Plan (IPP) and the Individual  
          Family Services Plan (IFSP) processes and procedures," the  
          author states.

          "To address any disparities in the regional center system,  
          the Department and regional centers must understand the  
          needs of all consumers and their families in order to  
          provide services and supports in a culturally and  
          linguistically appropriate manner," the author states.  
          "Health literacy is essential to promoting quality of life,  





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          health development, and healthy behaviors across all groups  
          and life stages."

          This bill inserts in a number of key locations in the  
          statute the requirement that assessment, planning for an  
          IPP or IFSP, and other key communication be done in the  
          native language or with cultural sensitivity to the  
          consumer and his or her family, as appropriate.

           Senate Hearing

           The Senate Select Committee on Autism and Related Disorders  
          held an informational hearing on April 30, 2012, to discuss  
          questions surrounding equal access to regional center  
          services for consumers with autism spectrum disorders  
          (ASD). The hearing was prompted by a series of articles in  
          2011 in the Los Angeles Times, which explored the  
          differences that families of children with autism had in  
          accessing services. "Warrior Parents Fare Best in Securing  
          Autism Services" states that people of color, low income,  
          and socio-economically disadvantaged communities receive  
          fewer services compared to their white counterparts, and  
          found that DDS spent an average of $11,723 per child on  
          whites; $11,063 on Asians; $7,634 on Latinos, and $6,593 on  
          blacks.
           
          A key point of the series was that parents who fought more  
          for their children gained more services. Often, these  
          parents are wealthier, more sophisticated in navigating  
          bureaucratic systems, fluent in English, and able to devote  
          significant time to providing for their children. In  
          contrast, the article states, parents who work multiple  
          jobs, single parents, immigrants, those who can't speak  
          English, and those who have multiple children don't have  
          the time and/or ability to fight for the services that  
          their children are legally entitled to receive. 

          Non-English speaking families also are less likely to seek  
          regional center services and tend to be more comfortable  
          going to health clinics or providers who are culturally and  
          linguistically sensitive to their own race/ethnicity.   
          Often times, families of individuals who are eligible for  
          regional center services are engaged with community-based  
          organizations, which provide services and support to  
          communities with cultural and linguistic barriers as well  





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          as socio-economic barriers.

          Though all regional centers are supposed to follow the same  
          criteria, average spending per child varies widely from  
          place to place and race to race, according to data obtained  
          by The Times under the California Public Records Act. The  
          articles also noted that in 2010, the system served 16,367  
          autistic children between the ages of 3 and 6, spending an  
          average of $9,751 per case statewide. But spending ranged  
          from an average of $1,991 per child at the regional center  
          in South Los Angeles to $18,356 at the one in Orange  
          County.

          An outcome of the select committee's hearing was a  
          20-member Taskforce on Equity and Diversity for Regional  
          Center Autism Services, appointed by Senate President pro  
          Tempore Darrell Steinberg. The group was charged with  
          finding recommendations to ensure that consumers of  
          regional center services receive appropriate and timely  
          supports regardless of race, ethnicity, educational  
          background and other socio-economic factors. A 119-page  
          report, "A Preliminary Report by the Taskforce on Equity  
          and Diversity for Regional Center Autism Services," was  
          published on March 18, 2013, and identified 19 recommended  
          changes to practice within the Developmental Services  
          system based on the work of five subcommittees.

          Among them was the recommendation that DDS and regional  
          centers ensure that all consumers and their families  
          receive information, including written documents, about the  
          IPP and IFSP processes and information about supports in a  
          manner that is culturally and linguistically competent. The  
          taskforce made specific recommendations about where to  
          insert requirements for culturally and linguistically  
          appropriate processes, which are largely reflected in this  
          bill. (P. 16)

           Regional Centers
           
          Regional Centers are part of a system of care overseen by  
          the Department of Developmental Services (DDS). With a  
          proposed budget of $4.3 billion for community-based  
          services in 2013-2014, DDS is responsible for coordinating  
          care and providing services for more than 250,000 people  
          with developmental disabilities who receive services and  





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          supports to live in their communities, as well as  
          approximately 1,560 people who resided in developmental  
          centers as of March 6, 2013. 

          California's 21 regional centers are non-profit  
          organizations that provide local services and supports to  
          individuals through contracts with DDS. Services for  
          consumers are determined through an IPP, and those services  
          are provided through contracts with the regional centers. 
           
          Access to Health Care Services

           The U.S. Department of Health and Human Services Office of  
          Minority Health has issued 14 standards for health  
          organizations to ensure Culturally and Linguistically  
          Appropriate Services (CLAS). In 2001, the Office of  
          Minority Health released a report<1> which identified  
          adoption of CLAS standards as a way to correct inequities  
          that currently exist in the provision of health services,  
          and to make these services more responsive to the  
          individual needs of all patients/consumers. 

          Standards are intended to be inclusive of all cultures and  
          not limited to any particular population group or sets of  
          groups. However, they are especially designed to address  
          the needs of racial, ethnic, and linguistic population  
          groups that experience unequal access to health  
          services.<2>




           Related Legislation

           This bill is part of a package of legislation drafted from  
          -------------------------
          <1>  
          http://minorityhealth.hhs.gov/assets/pdf/checked/executive.p 
          df

          <2> US Department of Health and Human Services, Office of  
          Minority Health, "National Standards for Culturally and  
          Linguistically Appropriate Services in Health Care," March  
          2001, 






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          recommendations in the Taskforce's report. Other bills in  
          this 2013 package include: 

          SB 158 (Correa) would establish a pilot project coordinated  
          by a major university to identify underserved communities  
          in regional center catchment areas and improve Autism  
          identification and services in those communities.

          SB 208 (Lara) requires that a request for proposal prepared  
          by DDS or a regional center that relates to consumer  
          services and supports include a section on equity and  
          diversity.

          SB 319 (Price) Requires DDS to ensure that the regional  
          centers collect, analyze, and report data in a way that  
          allows for comparisons across regional centers, and  
          requires regional centers to identify plans to reduce  
          disparities that are identified.

          SB 321 (Price) would require DDS to establish performance  
          contract guidelines and measures relating to issues of  
          cultural and linguistic competency.

          SB 367 (Block) would require Regional Centers to develop a  
          Regional Center Study and Planning Process for Equity and  
          Cultural and Linguistic Competency (RESPECT) to oversee  
          issues related to regional center staff and vendor cultural  
          and linguistic competency.

          AB 1232 (V. Manuel Perez) would require the existing DDS  
          quality assurance instrument to assess the provision of  
          services in a linguistically and culturally competent  
          manner and include an outcome-based measure on issues of  
          equity and diversity. 

                                         
                                   POSITIONS  

           Arguments in support
           
          Disability Rights California, the bill's sponsor, notes  
          that it is the responsibility of DDS and the regional  
          centers to provide services and supports for consumers in a  
          way that is person-centered, individualized, and take into  
          account, the needs, preferences, and choices of the  





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          consumer and the family. 

          Support:       Disability Rights California (sponsor)

          Oppose:   None received



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