BILL ANALYSIS Ó SB 468 Page 1 Date of Hearing: August 13, 2013 ASSEMBLY COMMITTEE ON HUMAN SERVICES Mark Stone, Chair SB 468 (Emmerson and Beall) - As Amended: August 6, 2013 SENATE VOTE : 38-0 SUBJECT : Developmental services: statewide Self-Determination Program SUMMARY : Establishes a statewide Self-Determination Program for individuals with developmental disabilities and makes the program available in every regional center catchment area. Specifically, this bill : 1)Declares a number of legislative findings related to the establishment of the Self-Determination Program, including a declaration of legislative intent that participation in the Self-Determination Program be available to all regional center consumers, on a voluntary basis, regardless of geographic location, economic or educational background, or race or ethnicity. 2)Requires the Department of Developmental Services (DDS) to implement a statewide Self-Determination Program that would provide a participant and his or her family an individual budget to maximize choice and flexibility in services provided to implement the participant's individual program plan (IPP). 3)Phases in the statewide Self-Determination Program over three years, initially serving up to 2,500 regional center consumers, which includes the remaining participants in the self-determination pilot project authorized pursuant to Section 13 of Chapter 1043 of the Statutes of 1998, as amended. 4)Makes participation in the Self-Determination Program voluntary and requires the program to be available to individuals who reflect the disability, ethnic and geographic diversity of the state. 5)Requires DDS to ensure that the Self-Determination Program is cost neutral in the aggregate and improves consumer outcomes SB 468 Page 2 over time through increasing consumer and family control over services, comprehensive person-centered planning, consumer and family training on the principle of self-determination, consumer choice of independent facilitators and financial management services providers, and overall innovation that will allow consumers to achieve their goals, as specified. 6)Defines self-determination as a voluntary delivery system consisting of a defined and comprehensive mix of services and supports, selected and directed by a participant through person-centered planning, in order to meet all or some of the objectives in his or her IPP and promote inclusion in the community, as specified. 7)Requires the Self-Determination Program to fund only those services and supports that are deemed eligible for federal financial participation by the federal Centers for Medicare and Medicaid Services. 8)Provides that the Self-Determination Program is fully voluntary and bars a regional center from requiring or prohibiting participation in the program as a condition of receiving services and supports otherwise available through the regional center. 9)Grants eligibility for participation in the Self-Determination Program for any regional center consumer who meets the following requirements: a) Is three years of age or older; b) Has a developmental disability, as defined in WIC Section 4512; c) Does not live in a licensed long-term health care facility, as specified; and d) Agrees to meet the requirements of the Self-Determination program, as specified. 1)Authorizes participation in the Self-Determination Program for consumers who are not eligible for Medi-Cal, provided that they meet all other program eligibility requirements and the services and supports they receive are otherwise eligible for federal financial participation. SB 468 Page 3 2)Allows an individual receiving services and supports under the self-determination pilot programs established pursuant to Section 13 of Chapter 1043 of the Statutes of 1998, as amended, to either continue to receive services and supports under the Self-Determination Program or transition to other services and supports within the regional center system, as specified. 3)Requires additional federal financial participation funds generated by individuals participating in the Self-Determination Program to be used to offset the administrative costs of the program, including training for consumers, family members and regional center staff; regional center caseload ratio improvement; and costs associated with the initial person-centered planning meeting and development of the initial budget amount for individual participants. 4)Requires a regional center to provide for a participant's transition from the Self-Determination Program to other services and supports, as specified, provided that the participant is determined to no longer be eligible for the program or voluntarily chooses to exit. 5)Allows a participant who transitions out of the Self-Determination Program to return to the program upon meeting all applicable eligibility requirements and receiving approval of his or her planning team, except that a participant that exits the program voluntarily cannot return to the program for at least 12 months. 6)Allows a Self-Determination Program participant to continue to receive self-determination services and supports if he or she transfers to another regional center catchment area. 7)Requires a Self-Determination Program participant's IPP team to utilize the person-centered planning process to develop his or her IPP and requires the IPP team to determine the participant's individual budget amount to ensure it will help the participant achieve the goals established in his or her IPP. 8)Requires a participant to choose and purchase the services and supports necessary to implement his or her IPP, and authorizes the purchase certain services, as specified, that were SB 468 Page 4 suspended as a result of budget cost control restrictions. 9)Provides that the individual budget amount shall equal 98% of individual participants' annual purchase of service costs, as specified, during the first two years of the Self-Determination Program, and requires DDS, in consultation with stakeholders, to develop one or more additional methodologies for calculating individual budget amounts prior to the end of the second year of the program. 10)Requires the IPP team, using any of the authorized methodologies, to determine a participant's individual budget amount, which shall be available to the participant each year for the purchase of program services and supports and distributed among uniform budget categories, as specified, until a new individual budget amount is determined. 11)Authorizes participants to annually transfer up to 10% of the funds originally distributed to any budget category to another budget category or categories, and allows transfers in excess of 10% provided the transfer is approved by the regional center or the participant's IPP team. 12)Allows the IPP team to adjust a participant's individual budget amount to address a change in the participant's circumstances, but otherwise prohibits an individual budget amount from being calculated more than once in a 12-month period. 13)Requires the IPP team to annually ascertain any changes in a participant's circumstances in order to make necessary changes to the participant's individual budget amount. 14)Requires DDS to apply for federal Medicaid funding for the Self-Determination Program by December 31, 2014, as specified, makes establishment of the program contingent upon approval of federal funding, and requires DDS to develop regulations to implement the program. 15)Requires DDS, in consultation with stakeholders, to develop informational materials about the Self-Determination Program and ensure that regional centers are trained in all aspects of the program, as specified. 16)Requires each regional center to implement the SB 468 Page 5 Self-Determination Program as a term of its contract with DDS and do all of the following: a) Contract with local consumer or family-run organizations to conduct outreach to consumers and families to provide information about the Self-Determination Program and help ensure that the program is available to a diverse group of participants and underserved communities; b) Collaborate with the local consumer or family-run organizations to jointly conduct training on the Self-Determination Program; and c) Advance funds to a financial management service provider, not to exceed 15% of the individual budget amount at any one time, to facilitate participation in the Self-Determination Program when a participant's IPP team determines the advance is necessary to enable participation in the program. 1)Defines financial management services as functions that assist the participant to manage and direct the distribution of funds contained in the individual budget, to ensure the participant has the financial resources to implement his or her IPP throughout the year, and requires the costs of financial management services to be paid by a participant out of his or her individual budget. Requires a participant to utilize the services of a conflict-of-interest-free financial management services provider of his or her own choosing. 2)Requires the financial management services provider to provide the participant and the regional center service coordinator with a monthly individual budget statement with detailed information about how funds within the budget are allocated, as specified. 3)Requires only the financial management services providers to meet DDS vendorization requirements and requires all other service providers within the Self-Determination Program to have applicable state licenses, certifications, or other state-required documentation but exempts them from the vendorization requirement for purposes of the program. 4)Defines independent facilitator as a conflict-of-interest-free person, selected by the participant and paid by the SB 468 Page 6 participant out of his or her individual budget, who may assist the participant in making informed decisions about his or her individual budget and in locating and coordinating services and supports, as specified. Allows the participant to choose not to use an independent facilitator and instead seek these services and functions from a regional center service coordinator of his or her choosing. 5)Allows a participant to request criminal history background check information for a person seeking employment as a service provider for that participant, at no charge to the participant or the regional center, and describes the process for providing that information to a participant. 6)Requires the establishment of local volunteer advisory committees at each regional center and a volunteer statewide advisory committee, as specified, to ensure the effective implementation of the Self-Determination Program and to facilitate the sharing of best practices and related training materials. 7)Requires DDS, commencing January 10, 2016, to annually provide data pertaining to the Self-Determination Program, as specified, to the appropriate policy and fiscal committees of the Legislature. 8)Authorizes the State Council on Developmental Disabilities (SCDD), in collaboration with the state protection and advocacy agency and the federally-funded University Centers for Excellence in Developmental Disabilities Education, Research and Service, to work with regional centers to survey participants regarding their satisfaction with the Self-Determination Program, and requires the SCDD to issue a report to the Legislature on the status of the Self-Determination Program, no later than three years following the implementation of the program, as specified. EXISTING LAW : 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 SB 468 Page 7 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 c) Statewide training and review of the IPP plan creation, as specified. (WIC 4646.5) 1)Creates a process by which regional centers may "vendorize" service providers, thereby providing a path to contract for services with that provider. (WIC 4648 (a)(3)) SB 468 Page 8 2)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, provided it is necessary to expand the availability of needed services of good quality. (WIC 4648(e)(1)) 3)Requires regional centers to provide the consumer, his or her parent, legal guardian, or other appropriate authorized representative, as specified, at least annually, a statement of services and supports the regional center purchased, for the purpose of ensuring that the services are delivered. (WIC 4648(h)) 4)Requires DDS, in cooperation with the regional centers, to ensure that all providers of services and supports are informed about their responsibility to comply with conditions of any contract between the regional center and the provider or the provider and DDS. (WIC 4648.1 (c)) 5)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.) 6)Suspends the availability of specified services for purchase by the regional center in order to implement cost containment provisions included in the 2009-2010 State Budget Act. (WIC 4648.5, 4686.5) 7)Creates a self-directed services program, contingent upon federal funding approval, under which consumers of regional center services can opt for a set individual budget that allows them to choose from a menu of service options rather than having services coordinated through a regional center case manager. (WIC 4685.7) FISCAL EFFECT : According to the Senate Appropriations Committee: 1)One-time costs likely in the hundreds of thousands for the Department of Developmental Services to establish program requirements and apply for federal approval to draw down federal matching funds (General Fund). SB 468 Page 9 2)Administrative costs to the regional centers in the low millions (General Fund), which are likely to increase initially then decline as consumers shift to using a self-directed budget. 3)No anticipated increase in the overall demand for services and supports under the program because the bill requires the program to be implemented in a manner that is cost-neutral to the state. 4)Potential ongoing state savings of about $2.8 million per year from additional federal funding for current services (General Fund). COMMENTS : This bill establishes a statewide Self-Determination Program within California's regional center system for individuals with developmental disabilities, contingent on federal funding approval. With implementation of this new program, the authors of this bill seek to ensure person-centered planning for participants' services, as well as increase the ability of regional center consumers and their families to choose and direct the services and support they receive through their regional centers. Furthermore, participants will have the flexibility to purchase preferred services and relinquish services that aren't successful in helping them achieve the desired outcomes and goals outlined in their IPPs. The Self-Determination Program will be available to up to 2,500 regional center consumers, on a voluntary basis, for the first three years of implementation, after which the program will be available to all eligible regional center consumers throughout the state. This bill further requires that the program be implemented and administered consistently throughout the state, and provides for extensive oversight to ensure positive participant outcomes are achieved and funds are being allocated and spent appropriately. 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. The term "developmental disability" means a disability that SB 468 Page 10 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 serve roughly 260,000 consumers statewide. Most consumers live and receive services in the community, and approximately 1,500 regional center 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. Regional center service delivery : The state's 21 regional centers plan, coordinate, and pay for services and supports for people with developmental disabilities 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. The Lanterman Act requires that the planning process for 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. SB 468 Page 11 Services and supports coordinated through California's regional centers include, but are not limited to: residential placements and affordable housing; supported living services; respite care; transportation services; day programs; supported employment, work activity and work support programs; dental services; and various social and therapeutic programs. Suspended services : The 2009-2010 Budget Act trailer bill for developmental services (Fourth Extraordinary Session, Chapter 9, Statutes of 2009) enacted a number of provisions intended to achieve a $200 million cut in the developmental services budget. The bill included a requirement to maximize the use of generic services (e.g., In-Home Supportive Services and other existing services used by individuals outside of the regional center system), as well as a suspension of educational services for children ages 3 to 17 years and various nonmedical therapies and services. The suspended services included camping, horseback riding, art, dance, music, and other specialized recreation services. While some exceptions were made to allow consumers to continue to access these services under special circumstances, including cases in which the service is the primary or critical means of ameliorating the consumer's condition, access was eliminated for the vast majority of consumers. The recent history of self-determination in California : The state's efforts to provide a self-determination option to consumers in the developmental services system began with what were intended to be three-year pilot projects launched at five regional centers in January 1999, which were subsequently reauthorized by the Legislature through 2004. Although the statute establishing the pilots was repealed, they continue to successfully operate and currently serve approximately 200 individuals. The 2005-2006 Budget Act included a new Self-Directed Services Program, which was intended to expand the original pilot program statewide, contingent upon approval of a federal waiver for self-directed services. The waiver application was submitted in 2008, but was subsequently stalled when the Centers for Medicare and Medicaid Services (CMS) invoked rules that would have required a redesign of the state's payment structure for developmental services; DDS would have had to assume responsibility for paying providers directly rather than allowing the regional centers to serve as fiscal intermediaries. SB 468 Page 12 Consequently, CMS never approved the Self-Directed Services waiver, and the program was never implemented. With the renewal of California's principal Home and Community Based Services (HCBS) waiver in 2012, CMS redefined DDS as an Organized Health Care System, thereby allowing the state to continue to pay approved service providers through the regional centers rather than requiring direct payment from DDS. As part of the 2009-2010 Budget Act, which included the suspension of various non-medical regional center services, the Legislature approved the development of an Individual Choice Budget; another attempt to provide individual consumers and their families increased flexibility in access to services, including those that had been suspended. Although DDS convened a budget advisory group to discuss what the Individual Choice Budget would entail, it was never implemented, as DDS was not able to certify that the Individual Choice Budget would result in the savings target proposed in the law. Self-determination principles : The five principles of self-determination, as written and defined in this bill, are as follows: 1)Freedom, which includes the ability of adults with developmental disabilities to exercise the same rights as all citizens; to establish, with freely chosen supporters, family and friends, where they want to live, with whom they want to live, how their time will be occupied, and who supports them; and, for families, to have the freedom to receive unbiased assistance of their own choosing when developing a plan and to select all personnel and supports to further the life goals of a minor child; 2)Authority, which includes the ability of a person with a disability, or family, to control a certain sum of dollars in order to purchase services and supports of their choosing; 3)Support, which includes the ability to arrange resources and personnel, both formal and informal, that will assist a person with a disability to live a life in his or her community that is rich in community participation and contributions; 4)Responsibility, which includes the ability of participants to take responsibility for decisions in their own lives and to be accountable for the use of public dollars, and to accept a SB 468 Page 13 valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community; and 5)Confirmation, which includes confirmation of the critical role of participants and their families in making decisions in their own lives and designing and operating the system that they rely on. These five principles are explicitly included in the provisions of this bill as a means of protecting the rights and responsibilities of participants, as well as guiding training and other practices included in the implementation of the Self-Determination Program. Need for the bill : The Self-Determination Program established in this bill is different from the inactive Self-Directed Services program in current law in several key ways, including that it: 1)Allows more flexibility in seeking federal reimbursement; 2)Expands eligibility to consumers living in facilities licensed by DSS (non-medical community facilities), which increases flexibility and choice for those participants with respect to their day programs and work activities; 3)Generates additional financial participation by requiring individuals in the current self-determination pilot program, for whom federal funding is not currently drawn down, to either continue in the new Self-Determination Program or return to the traditional regional center system; 4)Requires the use of a financial management services providers to meet new federal requirements; SB 468 Page 14 5)Requires that there be a uniform methodology to calculate the individual budgets during the phase-in period; and 6)Authorizes the IPP team to adjust a participant's individual budget amount to address a change in the participant's circumstances. The traditional system for delivering regional center services requires regional centers to pay providers directly for the services identified in a consumer's IPP. Conversely, because the Self-Determination Program is built on the concept of increased control over providers and services, and flexibility for consumers and their family members, participants in the program will be provided an individual budget amount based on their IPP, which they will then use to choose and purchase the services and supports they need. This bill requires a participant to use the services of a conflict-of-interest free financial management services provider, which the participant will pay for out of his or her individual budget amount. The financial management services provider will help the participant manage and direct the distribution of funds while making sure the individual budget lasts throughout the year and is not exhausted before a new individual budget amount is authorized. In addition to a financial management services provider, the Self-Determination Program allows a participant to utilize the services of a conflict-of-interest-free independent facilitator to help the participant locate and coordinate services and supports that are in line with the participant's IPP. If a participant desires these services but chooses not to locate and hire an independent facilitator, the participant can seek these services from a regional center services coordinator. For the first two years after implementation of the Self-Determination Program, the individual budget amount provided to participants will be equal to 98% of their individual annual purchase of service costs, which is intended to ensure the program is cost neutral in the aggregate. This bill requires DDS to work with stakeholders to develop additional budget methodologies prior to the end of the second SB 468 Page 15 year. Regardless of which authorized budget methodology is applied, the Self-Determination Program will allow a participant's IPP team to adjust his or her individual budget amount to address a change in the participant's circumstances. In addition to granting participants more say in deciding how and by whom their services and supports are delivered, supporters of this legislation indicate that one of the draws of the Self-Determination Program, despite the 98% individual budget amount cap, is that it renews participants' access to the educational, recreational and non-medical therapeutic services that were suspended as a result of cost-control restrictions in the 2009-2010 Budget Act. Arguments in support : According to the authors of this bill, the Self-Determination Program is an innovative approach to regional center service delivery that will allow consumers and their families to "think outside the box" when choosing and planning services and will help them meet their life goals. The authors go on to say that bureaucracy will be limited through the program, thereby allowing consumers and their family members to easily navigate the system. In support, the Special Needs Network states, "The [current] complicated labyrinth of care systems has been one of the primary barriers to vital therapies and services for these families. Self-Determination will free these families to freely access services based on the best outcomes and individual needs for their special needs." The Self-Advocacy Board of Los Angeles County further states, "For more than a decade, the self-determination pilot project has proved that it is both cost effective and produces positive outcomes for the people who have utilized it to purchase their own services. People should have the option to have greater control over the monies that will be spent on supporting them to live typical lives. This is in line with the intent of the Lanterman Act that puts the decision-making authority in the hands of the person receiving the supports. We believe it is time to allow this forward-thinking approach to service provision to operate across the state in every regional center catchment area." Arguments in opposition : The Association of Regional Center Agencies (ARCA) has indicated that it supports the concept of self-determined services and believes that, when properly SB 468 Page 16 implemented, it empowers individuals with developmental disabilities and can be a powerful tool to address historical funding differences between different demographic groups. However, ARCA opposes this bill, citing a number of areas in which the organization thinks amendments are necessary. ARCA states, "While [self-determined services] has great potential to provide individuals and their families with increased flexibility and control over their services, if not carefully administered, it can make existing service and access inequities more pronounced. Providing some individuals significant opportunities and others with comparable needs with very little is not an acceptable outcome to any proposed system change. Any effort to bring widespread expansion of [self-determined services] to California without adequate planning runs the risk of limiting rather than promoting access to services for individuals with developmental disabilities." Committee staff recommendations : Should this bill pass, the authors should continue to work on language in the bill pertaining to the following details: 1)The budget methodology for the phase-in period : The language should ensure that the methodology addresses opportunities for new regional center consumers to participate and does not further disparities in services for underserved communities. 2)Criminal background checks : The current language specifies that neither participants nor regional centers are required to pay for criminal background checks, but there is no person or entity identified to pay. Procedures for handling and releasing the criminal background check once it is received should also be explained in greater detail to ensure a meaningful background check process. 3)Oversight and monitoring of provider qualifications : There is no structure in the current language to ensure that non-vendorized providers meet the required qualifications prior to serving participants and continue to meet those requirements while they are serving participants. PRIOR LEGISLATION : AB 1244 (Chesbro), created a self-determination program to provide individuals with a single, capitated funding allocation they may use to purchase services that support goals identified SB 468 Page 17 in their individual program plan. Died in the Senate Human Services Committee. AB 9 X4 (Evans), Chapter 9, Statutes of 2009, 4th Extraordinary Session, created an option for the individual choice budget, which allowed for the purchase of otherwise suspended services but required savings of $35.1 million. It has not been implemented. AB 131 (Assembly Budget Committee), Chapter 80 Statutes of 2005, established a self-directed services option statewide, contingent upon approval of a federal waiver. A waiver was never obtained, and it has not been implemented. SB 1038 (Thompson), Chapter 1043, Statutes of 1998, authorized the creation of pilot projects for self-determination at three regional centers. Two other regional centers also created independent self-determination pilots under an alternative service delivery model, bringing to five the number of regional centers engaged in the pilot. These pilots continue today. REGISTERED SUPPORT / OPPOSITION : Support BETTZEDEK Cal TASH California State Council on Developmental Disabilities CASHPCR Creative Solutions for Hope Developmental Disabilities Area Board 10 Disabilities Rights California Disabled Sports Eastern Sierra Easter Seals California Educate. Advocate. Greenhouse Therapy Center North Los Angeles County Regional Center Pasadena Child Development Associates Self-Advocacy Board of Los Angeles County Special Needs Network (SNN) 20 individuals Opposition Association of Regional Center Agencies (ARCA) SB 468 Page 18 Analysis Prepared by : Myesha Jackson / HUM. S. / (916) 319-2089