BILL ANALYSIS                                                                                                                                                                                                    Ó



          SENATE COMMITTEE ON HUMAN SERVICES
                               Senator McGuire, Chair
                                2015 - 2016  Regular 

          Bill No:              SB 982
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          |Author:   |McGuire                                               |
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          |Version:  |March 28, 2016         |Hearing    |April 12, 2016   |
          |          |                       |Date:      |                 |
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          |Urgency:  |No                     |Fiscal:    |Yes              |
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          |Consultant|Mareva Brown                                          |
          |:         |                                                      |
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            Subject:  State Department of Developmental Services:  Sonoma  
                                   State Hospital


            SUMMARY
          
          This bill requires the Department of Developmental Services  
          (DDS) to develop and conduct a three-year longitudinal study, as  
          specified, between 2017 and 2020 to assess the quality of life  
          and outcomes of residents that relocate from the Sonoma  
          Developmental Center as a result of the closure of that center.  
          The bill specifies the contents of the study, including  
          assessments of the residents before they leave the center and at  
          one-year and two-year intervals after they relocate. It requires  
          DDS to submit interim and final reports to the Legislature, as  
          specified.


            ABSTRACT
          
          Existing law:

             1)   Establishes the Lanterman Developmental Disabilities  
               Services Act, which declares California's responsibility  
               for providing an array of services and supports to meet the  
               needs of each person with developmental disabilities in the  
               least restrictive environment, regardless of age or degree  
               of disability, and to support their integration into the  
               mainstream life of the community. (WIC 4500, et seq.) 








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             2)   Establishes the jurisdiction of DDS over state  
               developmental centers, including Sonoma, Fairview and  
               Porterville developmental centers and the responsibility of  
               each facility to create bylaws and rules, as specified.  
               (WIC 4440)


             3)   Requires DDS to submit a detailed plan to the  
               Legislature when it proposes closure of a developmental  
               center no later than April 1 immediately prior to the  
               fiscal year in which the plan is to be implemented, and as  
               a part of the Governor's proposed budget. (WIC 4474.1.   
               (a))

             4)   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,  
               to coordinate services and supports best suited to them  
               throughout their lifetime. (WIC 4620) 


             5)   Requires DDS to implement an improved, unified quality  
               assessment system, and expresses Legislative intent that  
               this system will ensure the well-being of consumers, taking  
               into account their informed and expressed choices. Requires  
               DDS with its stakeholders to identify a valid and reliable  
               quality assurance instrument, as specified, and to contract  
               with an entity with experience in tracking outcomes and  
               developing data systems. (WIC 4571)

             6)   Requires DDS, in consultation with the contractor, to  
               establish the methodology by which the quality assurance  
               instrument shall be administered, including, but not  
               limited to, how often and to whom the quality assurance  
               will be administered, and the design of a stratified,  
               random sample among the entire population of consumers  
               served by regional centers. Requires the contractor to  
               provide aggregate information for regional centers and the  
               state as a whole. (WIC 4571 (e))
          
          This bill:

             1)   Adds a new section, WIC 4474.12, requiring DDS to  








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               develop and conduct a three-year longitudinal study to  
               assess the quality of life and outcomes of developmental  
               center residents that relocate from the Sonoma State  
               Hospital as a result of the closure of that center.  
               Specifies that the study shall be conducted over the course  
               of the 2017-18 through 2019-20, inclusive, fiscal years.

             7)   Requires the study to do all of the following:


                  a.        Measure the residents' quality of life, their  
                    satisfaction with services, the degree to which the  
                    residents achieve their goals, such as independence,  
                    and other dimensions as determined by the department.


                  b.        Include assessments of the residents before  
                    they leave the center and at one-year and two-year  
                    intervals after they relocate from the center.


                  c.        Track the residential locations of the former  
                    residents of the center for purposes of conducting the  
                    one-year and two-year post relocation reassessments.


                  d.        Include a written report that does all of the  
                    following:


                        i.             Summarizes the findings based on  
                         the data collected.


                        ii.            Provides recommendations regarding  
                         how the closure could have been conducted in a  
                         manner that better served the needs of the  
                         residents and their families.


                        iii.           Specifies any community-based  
                         services for former residents that need to be  
                         improved.









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             8)   Requires DDS to maintain and update the addresses of,  
               and contact information for, former residents of the center  
               who relocated as a result of the closure of the center.


             9)   Requires DDS to ensure, to the extent permitted by law,  
               that researchers conducting the study have access to data  
               and other information necessary to conduct the study,  
               including the addresses of, and contact information for,  
               former residents of the center who relocated due to the  
               closure of the center.


             10)  Requires DDS to submit interim reports to the  
               Legislature regarding the study at the end of the first and  
               second years of the study, and to submit the study to the  
               Legislature upon its completion, as specified.


             11)  Sunsets the study on January 1, 2021.


            FISCAL IMPACT
          
          This bill has not been analyzed by a fiscal committee.

            BACKGROUND AND DISCUSSION
          
          Purpose of the bill:

          This bill requires DDS to develop and conduct a three-year  
          longitudinal study to assess the quality of life and outcomes of  
          developmental center residents that relocate from the Sonoma  
          Developmental Center as a result of the closure of that center.  
          According to the author, the longitudinal study would be modeled  
          after study conducted as part of the Stockton Developmental  
          Center closure which measured residents' quality of life,  
          satisfaction with services, and other factors before the  
          individual left the developmental center and one and two years  
          after they had moved. Additionally, developmental center  
          residents and their family members were asked to assess how well  
          the closure was handled and to make recommendations for how the  
          process could be improved, the author states.








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          The author states that requiring a comprehensive longitudinal  
          study would ensure families that their loved ones are receiving  
          quality care, enable the state to learn from and correct any  
          challenges that may arise from the transition and would be a  
          transparency and accountability mechanism. The author further  
          states, "Although there are currently tracking mechanisms, given  
          the fact that there will NO LONGER be any developmental centers  
          to fall back on if a resident has challenges in the community, a  
          comprehensive longitudinal study should be required."

          Developmental Centers
          
          DDS operates three state developmental centers - Sonoma,  
          Fairview and Porterville developmental centers - and one  
          smaller, 55-bed facility in Cathedral City that is often used as  
          a step-down placement for individuals with developmental  
          disabilities and challenging behavioral needs. Each  
          developmental center has three levels of care - a skilled  
          nursing facility, an intermediate care facility for individuals  
          with intellectual disabilities (ICF/IID), and a few beds in a  
          general acute care hospital. 

          In April of 2015, the Administration submitted a proposed plan  
          of closure for the Sonoma Developmental Center. This plan is  
          currently under review of legislative budget committees and must  
          be approved prior to implementation. On April 1, 2016, the  
          Administration submitted proposed closure plans for Fairview  
          Developmental Center and the general treatment program at  
          Porterville Developmental Center. These plans must also be  
          approved by the Legislature.

          The developmental centers once were considered the placement of  
          preference for individuals with significant needs. At its peak  
          in 1968, the developmental center system housed more than 13,400  
          individuals in seven facilities. Of the three remaining  
          facilities, the oldest is Sonoma Developmental Center (1891) and  
          the newest is Fairview Developmental Center (1959). Since then a  
          series of federal and state legal decisions began the movement  
          to provide services for individuals with developmental  
          disabilities in their communities. 

          As of March 30, 2016, the four state-run facilities collectively  
          served 1,005 individuals with significant physical or behavioral  








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          developmental disabilities. Of these, 204 individuals were in  
          the secure treatment program at Porterville Developmental  
          Center, and 158 were in the general treatment program. Another  
          237 individuals lived at Fairview Developmental Center and 359  
          were at Sonoma. The remaining 47 were at Canyon Springs, a  
          smaller state-run facility in Riverside County, which is not  
          slated for closure.

          Licensing and Certification concerns

          In January 2013, four of the 10 ICF units at Sonoma DC were  
          withdrawn from federal certification by DDS, in response to  
          notice that the federal government was moving to decertify, and  
          defund, the entire group of ICF units at the facility. These  
          actions came on the heels of widely reported revelations of  
          multiple instances of abuse, neglect, and other lapses in  
          caregiving at the institution. In March 2013, DDS entered into a  
          Program Improvement Plan agreement with the state Department of  
          Public Health (DPH), which was accepted by the federal Centers  
          for Medicare and Medicaid Services (CMS). As a condition of the  
          Program Improvement Plan, DDS contracted with an outside  
          consultant, the Delmarva Foundation, to conduct a root cause  
          analysis of the problems at Sonoma DC, and to develop an action  
          plan to ensure compliance with federal and state licensing and  
          certification requirements. On October 31, 2013, the DPH  
          accepted the Sonoma DC action plan which included the opening of  
          a new ICF unit, 118.5 new staff positions, three new wheelchair  
          transport vehicles, and extensive staff training. 

          The Administration assumed these corrective actions would result  
          in the restoration of certification and federal funding by July  
          1, 2014. However, this did not occur. A survey of the seven  
          certified ICF units at Sonoma DC in May 2014 resulted in their  
          decertification. Over the next 14 months, while CMS and the  
          Administration negotiated terms of a settlement. On June 30,  
          2015, DDS entered into a settlement agreement with CMS to extend  
          the final termination date for the remaining ICF residences to  
          July 1, 2016 with the potential for one or more extensions,  
          while DDS must continue program improvement activities.  
          Concurrent with these activities is the planned closure of the  
          developmental center.

          Similar concerns and CMS findings followed at the other two  
          developmental centers and on April 1, 2016, DDS revealed plans  








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          for closure of Fairview Developmental Center and the general  
          treatment area at Porterville DC. An agreement with CMS is  
          anticipated to follow within several weeks.

          Community based services


          California's 21 nonprofit regional centers are part of a system  
          of care for individuals with developmental disabilities overseen  
          by DDS. DDS is responsible for coordinating care and providing  
          services for nearly 290,000 people who receive services and  
          supports to live in their communities, as of March 2016.  
          Regional centers provide diagnosis and assessment of eligibility  
          and case managers help to plan, access, coordinate and monitor  
          the services and supports that are needed because of an  
          individual's developmental disability. Services for consumers  
          are determined through an individual program plan (IPP).



          Quality Assessments

          DDS has used a variety of quality assessment measurements,  
          beginning in 1993 with the Coffelt settlement Quality Tracking  
          Project, which focused on individuals who were placed in the  
          community from a developmental center as a result of the  
          lawsuit. According to DDS, The study assessed consumer and  
          family satisfaction, case management activities, independence,  
          productivity, integration, choice and self-determination,  
          service delivery patterns, health, safety, psychoactive  
          medication usage, qualities of home settings, and costs of  
          services. Using six different research designs and more than  
          4000 visits, the survey ultimately was reported in 19 separate  
          reports and found that movers had improvements in self-care  
          abilities, social behaviors, opportunities for choice making and  
          consumer satisfaction, among other domains. Negative outcomes  
          included fewer individuals with paid jobs and making less money  
          than they did in the DCs. Use of sedatives and psychotropic  
          medications had increased. 


          As part of the plan to close Stockton Developmental Center, DDS  
          agreed to complete a three-year longitudinal study in three  
          phases to track consumer outcomes and the quality of life of  








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          individuals upon its closure in 1996.  An interagency agreement  
          was reached with California State University, Sacramento (CSUS)  
          to conduct the study. 


          In 1997, responding to parent concerns, the Legislature codified  
          the state's responsibility to track and evaluate the well-being  
          of individuals moving from DCs, (SB 391, Chapter 294, Statutes  
          of 1997). The obligation was fulfilled by a variety of contracts  
          with researchers. In 2009, as part of the budget process, this  
          section of statute was deleted and replaced by language  
          directing DDS to complete a single survey, the Quality  
          Assessment Project, (WIC 4571) which was intended to provide  
          more appropriate information for CMS in seeking renewal of the  
          Home and Community Based Services (HCBS) Waiver, which provides  
          substantial matching funding for community programs. To satisfy  
          this requirement, DDS chose to use the National Core Indicator  
          survey.


          National Core Indicator survey


          The National Core Indicators (NCI) is a collaborative effort  
          between the National Association of State Directors of  
          Developmental Disabilities Services (NASDDDS) and the Human  
          Services Research Institute (HSRI).  The program began in 1997  
          to support NASDDDS member agencies to gather a standard set of  
          performance and outcome measures that can be used to track their  
          own performance over time, to compare results across states, and  
          to establish national benchmarks. Indicators address key areas  
          of concern including employment, rights, service planning,  
          community inclusion, choice, and health and safety, including  
          loneliness. In California, the NCI Quality Assessment Project  
          operates on a three year cycle, alternating data collection  
          between three distinct groups of people serviced by regional  
          centers: adult consumers, guardians and family members and  
          family members of children who receive services.


          DDS also is conducting a longitudinal study to better understand  
          the experience among movers and their families during the first  
          two years post transition into the community. This longitudinal  
          study will survey the first 100 people transitioning from a  








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          developmental center into the community and their families  
          beginning in January 2016. Study participants will be surveyed  
          at 3 months, 6 months, 1 year, and 2 years post transition using  
          the NCI survey tools. 

          Related legislation:
           
          AB 9 (Evans, Chapter 9, 4th Extraordinary Session) established a  
          requirement in statute for DDS to track outcomes of consumers in  
          the system. 

            COMMENTS
          
          The author may want to consider aligning the language of this  
          bill more closely with the language of the prior statutorily  
          required movers study, in order to ensure consistency in  
          outcomes and greater chances of comparability. Staff also  
          recommends broadening the scope to all three DCs that are slated  
          for closure and removing the sunset date to capture more robust  
          data. Specifically, staff recommends the following amendments: 

           WIC 4474.12.  (a)  To ensure that persons with developmental  
          disabilities who are moved from developmental centers to the  
          community are receiving necessary services and supports,  the  
          department shall  develop and conduct a   three-year   contract with  
          an independent agency or organization for a  longitudinal study,  
           commencing July 1, 2017,  to assess the quality of life and  
          outcomes of developmental center residents that relocate from  
          the Sonoma  State Hospital   Developmental Center, Fairview  
          Developmental Center and the general treatment area of  
          Porterville Developmental Center  as a result of the closure of  
           that   those  center  s  .  The study shall be conducted over the course  
          of the 2017-18 through 2019-20, inclusive, fiscal years.


            (b) The contractor shall be experienced in all of the following:  



               1)   Designing valid tracking instruments


             2)   Tracking the quality of community programs, including  
               outcome-based measures such as health and safety, quality  








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               of life, integration, choice and consumer satisfaction.


             3)   Tracking the quality and appropriateness of community  
               placements for persons moving from large institutions into  
               community settings.


             4)   Developing data systems


             5)   Data analysis and report preparation


            (c)The contractor shall measure consumer and family satisfaction  
          with services provided, including case management and quality of  
          life, including but not limited to health and safety,  
          independence, productivity, integration, opportunities for  
          choice and delivery of needed services. 


                    1)        The contractor shall meet with each person,  
                    and the person's family, legal guardian or  
                    conservator, when appropriate, no less than once a  
                    year to discuss quality of life and observe the  
                    person's services and supports.


                  2)        In cases where the consumer is not capable of  
                    communicating his or her responses and where there is  
                    no family member, guardian or conservator involved,  
                    the contractor shall meet with no less than two  
                    persons familiar with the consumer. Additionally, the  
                    contractor shall interview staff and friends who know  
                    the consumer best and review records, as appropriate.

            (d)   The contract may be satisfied by the same contractor used by  
          DDS to implement the quality assurance instrument pursuant to  
          WIC 4571, if appropriate.


            (b) The study conducted pursuant to this section shall do all  
          of the following:
          (1) Measure the residents' quality of life, their satisfaction  








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          with services, the degree to which the residents achieve their  
          goals, such as independence, and other dimensions as determined  
          by the department.
          (2) Include assessments of the residents before they leave the  
          center and at one-year and two-year intervals after they  
          relocate from the center.
          (3) Track the residential locations of the former residents of  
          the center for purposes of conducting the one-year and two-year  
          postrelocation reassessments.
          (4) Include a written report that does all of the following:
          (A) Summarizes the findings based on the data collected.
          (B) Provides recommendations regarding how the closure could  
          have been conducted in a manner that better served the needs of  
          the residents and their families.
          (C) Specifies any community-based services for former residents  
          that need to be improved.
           
           (c)   (e)  (1) For purposes of conducting the study, the department  
          shall maintain and update the addresses of, and contact  
          information for, former residents of the center who relocated as  
          a result of the closure of the center.
          (2) The department shall ensure, to the extent permitted by law,  
          that researchers conducting the study have access to data and  
          other information necessary to conduct the study, including the  
          addresses of, and contact information for, former residents of  
          the center who relocated due to the closure of the center.

           (d)   (f)  The department shall submit interim reports to the  
          Legislature regarding the study at the end of the first and  
          second years of the study, in accordance with the requirements  
                of Section 9795 of the Government Code. Upon the completion of  
          the study, the department shall submit the study to the  
          Legislature, in accordance with the requirements of Section 9795  
          of the Government Code.
           (e) This section shall remain in effect only until January 1,  
          2021, and as of that date is repealed, unless a later enacted  
          statute, that is enacted before January 1, 2021, deletes or  
          extends that date.
           
          >


            POSITIONS
          








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          Support:       
               Parent Hospital Association
               Sonoma County Board of Supervisors
               Sonoma Land Trust 
               California Association of Psychiatric Technicians

          Oppose:   


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