BILL ANALYSIS                                                                                                                                                                                                    �



                                                                  SB 555
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          Date of Hearing:   August 13, 2013

                        ASSEMBLY COMMITTEE ON HUMAN SERVICES
                                  Mark Stone, Chair
                    SB 555 (Correa) - As Amended:  August 5, 2013

           SENATE VOTE  :  36-0
           
          SUBJECT  :  Developmental services: regional centers: individual  
          program plans and individualized family service plans

           SUMMARY  :  Clarifies that regional centers must make every  
          reasonable effort to communicate with, and plan services for,  
          consumers and their families in the consumer's or family's  
          native language.   

          Specifically,  this bill  :

          1)Declares the following findings:

             a)   California's diverse language and ethnic communities  
               account for about 60% of its population.  The number of  
               people in the United States who do not speak English as  
               their native language has grown 140% over the past three  
               decades.  In California, about 40% 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; and

             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 individual program  
               plan and individualized family service plan processes and  
               procedures.








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          1)Requires a regional center to make every reasonable effort to  
            communicate in a family's native language during the planning  
            process for the individualized family service plan (IFSP) and  
            to provide a copy of the IFSP in the family's native language.

          2)Requires a regional center to document the family's native  
            language in the IFSP. 

          3)Requires a regional center to make every reasonable effort to  
            communicate in a consumer's native language or, when  
            appropriate, in the native language of his or her family or  
            representative, as specified, during the planning process for  
            the individual program plan (IPP) and to provide a copy of the  
            IPP in the identified native language.

          4)Requires regional centers to document the native language of  
            the consumer or, when appropriate, the consumer's authorized  
            representative, as specified, in the IPP.

          5)Defines every reasonable effort, for purposes of ensuring  
            compliance with requirements of Part C of the federal  
            Individuals with Disabilities Education Act (IDEA), including  
            its implementing regulations, as all effort necessary to meet  
            the regional center requirements with respect to use of a  
            family's native language during the IFSP planning process,  
            unless it is clearly not feasible to do so.

          6)Further defines every reasonable effort, for purposes of  
            ensuring compliance with Government Code Sections 11135  
            through 11139.5, including implementing regulations, as all  
            effort necessary to meet a regional center's requirements with  
            respect to use of a family's or a consumer's native language  
            during consumer intake and assessment, and during the IFSP or  
            IPP planning processes, unless it has been determined that  
            such effort would place undue hardship on the regional center.

          7)Defines "native language" as the language normally used or the  
            preferred language identified by the individual and, when  
            appropriate, his or her parent, legal guardian or conservator,  
            or authorized representative.

           EXISTING LAW  









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          1)Establishes an entitlement to services for individuals with  
            developmental disabilities under the Lanterman Developmental  
            Disabilities Services Act (Lanterman Act).  (WIC 4500 et seq.)

          2)Grants all individuals with developmental disabilities, among  
            all other rights and responsibilities established for any  
            individual by the United States Constitution and laws and the  
            California Constitution and laws, the right to treatment and  
            habilitation services and supports in the least restrictive  
            environment.  (WIC 4502)

          3)Establishes a system of 21 nonprofit regional centers  
            throughout the state to identify needs and coordinate services  
            for eligible individuals with developmental disabilities and  
            requires the Department of Developmental Services (DDS) to  
            contract with those regional centers to provide case  
            management services and arrange for or purchase services that  
            meet the needs of individuals with developmental disabilities,  
            as defined.  (WIC 4620 et seq.)

          4)Requires public and private agencies serving regional center  
            consumers under the Lanterman Act to provide consumers  
            relevant information in an understandable form to aid them in  
            making decisions about their own day-to-day lives.  (WIC  
            4502.1)

          5)Requires the development of an IPP for each regional center  
            consumer, which specifies services to be provided to the  
            consumer, based on his or her individualized needs  
            determination and preferences, and 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)

          6)Requires the IPP planning processes to 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; and









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             c)   Statewide training and review of the IPP plan creation,  
               as specified.  (WIC 4646.5)

          1)Enacts, through federal law, the Early Intervention Program  
            for Infants and Toddlers with Disabilities of 1986 under the  
            Individuals with Disabilities Education Act (IDEA), and  
            requires DDS, regional centers and local education agencies to  
            provide early intervention services to infants and toddlers  
            with developmental delays, as specified.  (20 U.S.C. Sec. 1400  
            et seq., GOV 95000 et seq.)

          2)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.   
            (GOV 95020)

          3)Authorizes regional centers to solicit an individual or agency  
            through a request for proposals or other means to provide  
            needed services or supports not presently available and  
            provided it is necessary to expand the availability of needed  
            services of good quality.  (WIC 4648(e)(1))

          4)Requires all regional centers to conduct casefinding  
            activities, including notification of the availability of  
            services in English and such other languages as may be  
            appropriate to the catchment area, outreach services in areas  
            with a high incidence of developmental disabilities, and  
            identification of persons who may need services.  (WIC 4641) 

          5)Requires a regional center to provide initial intake and  
            assessment services to any person believed to have a  
            developmental disability, as specified, and identifies  
            guidelines and timelines for the intake and assessment  
            process.  (WIC 4642 et seq.)

          6)Requires state agencies, as specified, that are directly  
            involved with providing information or rendering services to a  
            substantial number of members of the public who are  
            non-English speaking to employ a sufficient number of  
            qualified bilingual persons in public contact positions to  
            ensure provision of information and services to the public, in  
            the language of the non-English speaking persons.  (GOV 7292)








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          7)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) 

          8)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) 

          9)Prohibits discrimination against individuals in protected  
            classes, including national origin and ethnic group  
            identification, for purposes of providing full and equal  
            access to benefits or programs that are operated or funded by  
            the state.  (GOV 11135 et seq.)
           
          FISCAL EFFECT  :  According to the Senate Appropriations  
          Committee, this bill will likely result in costs of $1 million  
          to $2 million per year for the regional centers to provide  
          translation services (General Fund) for initial intake and  
          assessment meetings and translation of certain documents. 

           COMMENTS  :  This bill is part of a package of legislation  
          intended to address disparities in the provision of regional  
          center services to underserved communities.  The author of this  
          bill seeks to ensure access to culturally and linguistically  
          competent services and supports by clarifying the current  
          requirement that regional centers communicate with consumers and  
          their families in their native languages when planning and  
          establishing services.
           
            Background  :  The Lanterman Act guides the provision of services  
          and supports for Californians with developmental disabilities.   
          Each individual under the Act, typically referred to as a  
          "consumer," is legally entitled to treatment and habilitation  
          services and supports in the least restrictive environment.   
          Lanterman Act services are designed to enable all consumers to  
          live more independent and productive lives in the community.  









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          The term "developmental disability" means a disability that  
          originates before an individual attains 18 years of age, is  
          expected to continue indefinitely, and constitutes a substantial  
          disability for that individual.  It includes intellectual  
          disabilities, cerebral palsy, epilepsy, and autism spectrum  
          disorders (ASD).  Other developmental disabilities are those  
          disabling conditions similar to an intellectual disability that  
          require treatment (i.e., care and management) similar to that  
          required by individuals with intellectual disabilities.  This  
          does not include conditions that are solely psychiatric or  
          physical in nature, and the conditions must occur before age 18,  
          result in a substantial disability, be likely to continue  
          indefinitely, and involve brain damage or dysfunction.  Examples  
          of conditions might include intracranial neoplasms, degenerative  
          brain disease or brain damage associated with accidents. 

          Direct responsibility for implementation of the Lanterman Act  
          service system is shared by the Department of Developmental  
          Services and 21 regional centers, which are private nonprofit  
          entities, established pursuant to the Lanterman Act, that  
          contract with DDS to carry out many of the state's  
          responsibilities under the Act.  The principal roles of regional  
          centers include intake and assessment, individualized program  
          plan development, case management, and securing services through  
          generic agencies or purchasing services provided by vendors.   
          Regional centers also share primary responsibility with local  
          education agencies (LEAs) for the provision of early  
          intervention services under the California Early Intervention  
          Services Act through Early Start.  In this shared role, LEAs  
          provide services for children with low-incidence disabilities  
          (e.g.: blindness, deafness, hard of hearing, orthopedic  
          impairments).

          Services provided to people with developmental disabilities are  
          determined through an individual planning process.  Under this  
          process, planning teams-which include, among others, the  
          consumer, his or her legally authorized representative, and one  
          or more regional center representatives-jointly prepare an  
          Individual Program Plan (IPP) based on the consumer's needs and  
          choices.  For infants and toddlers under 3 years of age, the  
          plan generated is an individualized family service plan (IFSP),  
          which similarly dictates the services to be provided to a child  
          to meet his or her developmental and early intervention needs.   
          The Lanterman Act requires that the planning process for  








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          developmental services promotes community integration and  
          maximizes opportunities for each consumer to develop  
          relationships, be part of community life, increase control over  
          his or her life, and acquire increasingly positive roles in the  
          community.  

          Regional centers serve roughly 260,000 consumers who receive  
          services such as residential placements, supported living  
          services, respite care, transportation, day treatment programs,  
          work support programs, and various social and therapeutic  
          programs.  Approximately 1,500 consumers reside at one of  
          California's four Developmental Centers-and one state-operated,  
          specialized community facility-which provide 24-hour  
          habilitation and medical and social treatment services.  July  
          2013 consumer characteristic data from the Department of  
          Developmental Services shows that 37% of the individuals served  
          by the regional centers are identified as White, whereas 35% are  
          identified as Hispanic just over 6% identify as Asian, 2.4%  
          identify as Filipino, and nearly 10% identify as Black or  
          African American.  

           Need for the bill  :  A four-part 2011 Los Angeles Times series  
          focused on autism included a report titled "Warrior Parents Fare  
          Best in Securing Autism Services," which addressed disparities  
          in access to developmental services among families from  
          different regions and demographic groups.  Among the conclusions  
          drawn based on the reporter's research, as indicated by the  
          title of the report, was that parents who fight harder for their  
          children gain more services.  This is clearly an unfair  
          situation given that all children who are determined to need  
          regional center services based on their assessment and diagnoses  
          are entitled to such services.  Also revealed in the report was  
          that the "fighter" parents tend to be sophisticated, wealthier  
          white parents who have the time and resources needed to navigate  
          the bureaucracy that stands between their children and necessary  
          services.  On the other hand, parents who work multiple jobs,  
          for example, with linguistic and cultural barriers that don't  
          allow them to navigate the system as easily, can find it nearly  
          impossible to get their children the effective services they  
          need in a timely manner. 

          Prompted, in part, by the Los Angeles Times series, the Senate  
          Select Committee on Autism and Related Disorders held an  
          informational hearing in April 2012 to discuss questions  








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          surrounding equal access to regional center services for  
          consumers with autism spectrum disorders.  The Select Committee  
          then formed a Taskforce on Equity and Diversity for Regional  
          Center Autism Services, which was charged with developing  
          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 report titled "A Preliminary Report by the Taskforce  
          on Equity and Diversity for Regional Center Autism Services" was  
          published on March 18, 2013, identifying a number of  
          recommendations for changes to current practice within the  
          developmental services system.  Among them were recommendations  
          to conduct IPP and IFSP meetings in the consumer or family's  
          preferred language and to provide consumers and family members  
          with the IPP or IFSP document and related documents in the  
          consumer or family's preferred language.

           Current language and communication requirements  :  Existing laws  
          and regulations prohibit discrimination against people with  
          disabilities with respect to their receipt of public services  
          and establish circumstances under which regional centers are  
          required to provide information to consumers and family members  
          in languages other than English.  More specifically, state  
          regulations require the use of an interpreter or translator  
          during IPP meetings if all members of the planning team-which  
          includes the consumer-don't speak the same language, and state  
          law requires that information exchanged by members of the  
          planning team be done so in a way that is understandable to the  
          consumer and his or her family.  State law further requires that  
          the final IPP be prepared in a form that is understandable to  
          the consumer and family. 

           Arguments in support  :  While current law, regulations, and the  
          DDS Manual of Policies and Procedures set forth standards for  
          regional centers to communicate with consumers and their family  
          members in a language they can understand, supporters of this  
          legislation assert that consumers and their families continue to  
          find adequate and appropriate services to be inaccessible due to  
          linguistic and cultural barriers.  The Lanterman Act requires  
          consumer and family voice and choice to be represented in a  
          consumer's IPP or IFSP planning process and in the written IPP  
          or IFSP document that will guide services.  This bill seeks to  
          ensure that consumers and their family members are able to  
          understand and fully participate in the regional center service  








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          planning process by clarifying that regional centers have an  
          obligation to make every reasonable effort to communicate with  
          consumers and their family members in their native language.

          According to the author, "Consumers and family members who are  
          limited English proficient have a right to a planning process  
          for regional center services that is linguistically and  
          culturally appropriate.  Regional centers must make every effort  
          to ensure that the intake process, the planning process for the  
          IPP and the IFSP, and the IPP and IFSP meeting be provided in  
          the consumer's and family's native language.  To address  
          disparities in the regional center system requires that having  
          IPP and IFSP planning process and meeting in the language the  
          consumer and family speaks and understands.  Effective  
          communication and health literacy is essential to promoting  
          quality of life, health development, and health behaviors across  
          all groups and life stages.  Service planning in a culturally  
          and linguistically competent manner can assist in achieving  
          health equity."

           Arguments in opposition  :  In opposition to this bill, the  
          Association of Regional Center Agencies (ARCA) asserts that  
          implementation of this bill would be costly.  ARCA states,  
          "Currently, centers often have the fortune of having staff who  
          are bilingual - with the caveat that the ability to speak a  
          language does not always indicate a fluency in the written word.  
           In other cases, meetings can be functionally conducted in  
          English.  And where neither of those options exists, there are,  
          at times, individuals outside of the nuclear family who  
          volunteer their time to help the family. In all circumstances,  
          the focus is on ensuring that the needs of the client and family  
          are met, and their comfort respected?Regional centers fund  
          formal language assistance when the aforementioned options are  
          unavailable.  But ARCA enquiries of regional centers found this  
          is in no way a standard practice?The translation mandate is  
          therefore neither a minor nor absorbable cost. Conservatively,  
          such a sweeping change in procedure is anticipated to require  
          tens of millions of dollars annually."
           
          RECOMMENDED AMENDMENTS  
          The August 5, 2013 version of the bill includes amendments that  
          require regional centers to make every reasonable effort to  
          provide certain information to consumers and their families,  
          both spoken and written, in their native languages.  Current law  








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          and regulations, which are referenced in provisions defining  
          every reasonable effort in this bill, already provide a hardship  
          exemption in cases where it is not feasible for the  
          communication and translation requirements to be met, thereby  
          making the addition of a new reasonable effort standard  
          redundant and confusing.  In order to clarify the language and  
          ensure that it matches the true intent and meaning of current  
          law and regulations, committee staff recommends the following  
          amendments (in mock-up form):

           1)Page 3, beginning in line 3:

           3       (c)  To address any disparities in the regional center  
          system, it
          4   is the intent of the Legislature that the State Department  
          of
          5  Developmental Services and regional centers ensure that all
          6   consumers and their families receive culturally and  
          linguistically
          7   competent information, including written documents, about  
          the
          8   individual program plan and individualized family service  
                             plan
          9    processes and procedures and that regional centers comply  
          with Part C of the federal Individuals with Disabilities  
          Education Act (20 U.S.C. Sec. 1400 et seq.) and implementing  
          regulations, and Government Code Section 11135-11139.7 and  
          implementing regulations.

           2)Page 10, beginning in line 17 through page 11, line 2:
           
          17       (g)  (1)  A regional center shall  make every reasonable  
          effort to  
          18    communicate and provide written materials in the family's  
          native language during the assessment, evaluation, and planning
          19    process for the individualized family service plan,  
           including during
           20     the individualized family service plan meeting  , as  
          required by Part C of the federal Individuals with  
          Disabilities Education Act (20 U.S.C. Sec. 1400 et seq.) and  
          implementing regulations, and as required by Government Code  
          Sections 11135-11139.7 and implementing regulations,   
          including the provision of alternative communication services  
          as provided in Title 22 California Code of Regulations  








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          Sections 98210-98211.
           21      (2)  A regional center shall make every reasonable  
          effort to
          22   provide a copy of the individualized family service plan in  
          the
          23    family's native language.
           24       (3)   (2)  The family's native language shall be documented  
          in the
          25    individualized family service plan.
           26      (4)  (A)  To ensure compliance with Part C of the  
          federal
          27   Individuals with Disabilities Education Act (20 U.S.C. Sec.  
          1400
          28   et seq.) and implementing regulations, "every reasonable  
          effort"
          29    shall mean all effort necessary to achieve the stated  
          requirements
          30    of this subdivision, unless it is clearly not feasible to  
          do so.
          31      (B)  To ensure compliance with Sections 11135 to  
          11139.5,
          32    inclusive, and implementing regulations, for any  
          requirement other
          33    than the requirements under Part C of the federal  
          Individuals with
          34    Disabilities Education Act and implementing regulations,  
          "every
          35   reasonable effort" shall mean all effort necessary to  
          achieve the
          36    stated requirements of this subdivision, unless it is  
          determined that
          37   the effort would place an undue hardship on the regional  
          center
          38    pursuant to Sections 11135 to 11139.5, inclusive, and  
          implementing
          39  regulations. This subdivision shall not limit the procedural  
          Page 11
           1   safeguards provided under Part C of the federal Individuals  
          with
          2    Disabilities Education Act and implementing regulations.  

           3)Page 14, beginning in line 19:
           
           19      (n)  To ensure compliance with Sections 11135 to  








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          11139.5,
          20    inclusive, of the Government Code and implementing  
          regulations,
          21   "every reasonable effort" means all effort necessary to  
          achieve
          22    the stated requirements of the applicable provisions of  
          this division,
          23   unless it is determined that the effort would place an  
          undue
          24   hardship on the regional center pursuant to Sections 11135  
          to
          25   11139.5, inclusive, of the Government Code and implementing
          26    regulations. This subdivision shall not limit the rights  
          established
          27    in Chapter 7 (commencing with Section 4700).
           
           4)Page 15, beginning in line 15:
           
          15       (b)   Unless it is clearly not feasible to do so, a  A  
          regional center
          16  shall  make every reasonable effort to  communicate with the
          17   consumer and his or her family pursuant to this section in  
          their
          18    native language, including through the provision of  
          alternative communication services, as required by Government  
          Code Sections 11135-11139.7 and implementing regulations.
          
           5)Page 16, beginning in line 11:
           
          11       (d)   Unless it is clearly not feasible to do so, a  A  
          regional center
          12  shall  make every reasonable effort to  communicate with the
          13   consumer and his or her family pursuant to this section in  
          their
          14    native language, including through the provision of  
          alternative communication services, as required by Government  
          Code Sections 11135-11139.7 and implementing regulations.

           6)Page 18, beginning in line 6:
           
          6       (h)  (1)   Unless it is clearly not feasible to do so, a  
           A regional
          7   center shall  make every reasonable effort to communicate in  
          the








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          8   consumer's native language, or, when appropriate, the native
          9   language of his or her family, legal guardian, conservator,  
          or
          10   authorized representative, during the planning process for  
          the
          11  individual program plan, including during the program plan
          12    meeting, including through the provision of alternative  
          communication services, as required by Government Code Section  
          11135-11139.7 and implementing regulations.
          13       (2)   Unless it is clearly not feasible to do so, a  A  
          regional center
          14   shall  make every reasonable effort to  provide alternative  
          communication services, including the provision of a copy of the
          15   individual program plan in the native language of the  
          consumer
          16   or his or her family, legal guardian, conservator, or  
          authorized
          17    representative, or both, as required by Government Code  
          Sections 11135-11139.7 and implementing regulations.

           PENDING RELATED LEGISLATION
           
          SB 158 (Correa) authorizes the establishment of the Regional  
          Center Excellence in Community Autism Partnerships (RE CAP)  
          pilot program to improve regional center services, supports,  
          interventions, and other resources to assist regional center  
          consumers with ASD living in underserved 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 367 (Block) includes issues related to cultural and  
          linguistic competency in regional center governing board  
          operations.

          AB 1232 (V. Manuel Perez) requires 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. 

           REGISTERED SUPPORT / OPPOSITION  :

           Support 








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          American Civil Liberties Union
          Area 4 Developmental Disabilities Board
          California State PTA
          Center for Autism and Related Disorders (CARD)
          Chinese Parents Association of the Disabled
          Disability Rights California
          Fuerza, Inc.
          Japanese Speaking Parents Association of Children with  
          Challenges
          Loving Your Disabled Child
          Public Counsel
          The ARC and United Cerebral Palsy California Collaboration
          Vietnamese Parents with Disabled Children Association, Inc.
           
            Opposition 
           
          Association of Regional Center Agencies (ARCA)

           Analysis Prepared by  :    Myesha Jackson / HUM. S. / (916)  
          319-2089