BILL NUMBER: SB 468AMENDED BILL TEXT AMENDED IN ASSEMBLY AUGUST 6, 2013 AMENDED IN SENATE MAY 28, 2013 AMENDED IN SENATE APRIL 25, 2013 AMENDED IN SENATE APRIL 15, 2013 INTRODUCED BY Senators Emmerson and Beall (Coauthor: Assembly Member Blumenfield Mitchell ) FEBRUARY 21, 2013 An act to add Section 4685.8 to the Welfare and Institutions Code, relating to developmental services. LEGISLATIVE COUNSEL'S DIGEST SB 468, as amended, Emmerson. Developmental services: statewide Self-Determination Program. Under existing law, the Lanterman Developmental Disabilities Services Act, the State Department of Developmental Services contracts with regional centers to provide services and supports to individuals with developmental disabilities. Under existing law, the regional centers purchase needed services and supports for individuals with developmental disabilities through approved service providers, or arrange for their provision through other publicly funded agencies. The services and supports to be provided to a regional center consumer are contained in an individual program plan (IPP), developed in accordance with prescribed requirements. Existing law establishes, contingent upon approval of a federal waiver, the Self-Directed Services Program, and requires the program to be available in every regional center catchment area to provide participants, within an individual budget, greater control over needed services and supports. This bill would require the department, contingent upon approval of federal funding, to establish and implement a state Self-Determination Program, as defined, that would be available in every regional center catchment area to provide participants and their families, within an individual budget amount , increased flexibility and choice, and greater control over decisions, resources, and needed and desired services and supports to implement their IPP, in accordance with prescribed requirements. The statewide program would be phased in over 3 years, initially serving up to 2,500 regional center consumers, and thereafter would be available on a voluntary basis to all eligible regional center consumers. The bill would require the department to, among other things, apply for federal funding for the program by December 31, 2014. This bill would provide that program participants receive an individual budget amount , as prescribed, to be used for the purchase of services and supports necessary to implement the participant's IPP. The bill would require program participants to agree to, among other things, manage self-determination services and supports within the individual budget amount. The individual budget amount would be available to the participant each year for the purchase of services and supports under the program until a new individual budget amount has been determined. The bill would, among other things, require each regional center to be responsible for implementing the program as a term of its contract, and to establish a local voluntary advisory committee to provide oversight of the project. The bill would require the State Council on Developmental Disabilities to form a volunteer statewide committee to, among other things, identify self-determination best practices. The bill would require the State Council on Developmental Disabilities to issue to the Legislature a report regarding the status of the program and recommendations to the program, as specified, and would require the department, beginning January 10, 2016, to provide to the appropriate policy and fiscal committees of the Legislature prescribed information relating to the program. Vote: majority. Appropriation: no. Fiscal committee: yes. State-mandated local program: no. THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS: SECTION 1. The Legislature finds and declares all of the following: (a) In 1998, the Legislature expanded the Lanterman Developmental Disabilities Services Act to include a self-determination pilot program project . That pilot program project was continued by the Legislature in 2002 and 2003. However, the pilot program project was only available at five regional centers and the number of individuals served by the local self-determination pilot program programs remains small, about 200 regional center consumers. (b) As reflected in the State Department of Developmental Services 2002 Report to the Legislature, the pilot program project remains an innovative, cost effective, and successful way of providing services to regional center consumers and their families. The findings in the report show that self-determination pilot program project participants were happy and experienced more freedom and responsibility in controlling the direction of their services and life choices, and the program project was cost neutral in the aggregate. The report also found that good self-determination requires intensive person-centered planning, collaboration, and follow-along services and supports. (c) Most other states have self-directed or self-determination services as a model for providing services. Many California consumers and families have asked for a statewide expansion of the pilot program project believing it will do the following: increase innovative and effective services, eliminate bureaucracy, and increase choices for consumers and parents, thereby allowing them to increase their control of services and supports by easily navigating increasingly complex service systems. (d) Consumers in traditionally underserved linguistic, cultural, socioeconomomic, and ethnic communities have unique challenges in accessing needed regional center services that have been impacted by service limitations imposed as a response to California's recent budget shortfalls. This is particularly true for consumers living at home with a parent or guardian. The Self-Determination Program offers increased service flexibility, which will promote access to needed services for these consumers and their families. (d) (e) The intent of this act is to allow for voluntary participation in the Self-Determination Program while ensuring that the program is available to all consumers regardless of geographic location, economic or educational background, or race or ethnicity, and ensuring a consistent statewide method of administration and comparable services. To ensure these outcomes are achieved, it is the intent of the Legislature that the State Department of Developmental Services and local advisory boards be responsible for oversight and monitoring of funds used for the Self-Determination Program and the achievement of consumer outcomes. (e) (f) In addition, the intent of this act is that the Self-Determination Program be phased in over a three-year period and that the program will continue to be available to all consumers as an option after the initial phase-in period ends. SEC. 2. Section 4685.8 is added to the Welfare and Institutions Code, to read: 4685.8. (a) The department shall implement a statewide Self-Determination Program. The Self-Determination Program shall be available in every regional center catchment area to provide participants and their families, within an individual budget amount , increased flexibility and choice, and greater control over decisions, resources, and needed and desired services and supports to implement their IPP. The statewide Self-Determination Program shall be phased in over three years, initially serving up to 2,500 regional center consumers, inclusive of the remaining participants in the self-determination pilot project authorized pursuant to Section 13 of Chapter 1043 of the Statutes of 1998, as amended, and thereafter shall be available on a voluntary basis to all regional center consumers who are eligible for the Self-Determination Program . The program shall be available to individuals who reflect the disability, ethnic, and geographic diversity of the state. (b) The department in establishing the statewide program shall ensure the following: (1) Participants in the program reflect the disability, ethnic, and geographic diversity of the state. (2) ( 1) The program is cost neutral in the aggregate. (3) ( 2) A statewide method of administration and determining comparable services. (4) ( 3) Oversight of expenditure of self-determined funds and the achievement of consumer outcomes over time. (5) ( 4) Increased consumer and family control over which services and supports best meet their needs and the IPP objectives. A participant's unique support system may include the purchase of existing service offerings from service providers or local businesses, hiring his or her own support workers, or negotiating unique service arrangements with local community resources. (6) ( 5) Comprehensive person-centered planning, including an individual budget and services that are outcome based. (7) ( 6) Consumer and family training to ensure understanding of the principles of self-determination, the planning process process, and the management of budgets, services, and staff. (8) ( 7) Choice of independent facilitators who can assist with the person-centered planning process and choice of financial management services providers vendored by regional centers who can assist with payments and provide employee-related services. (9) ( 8) Innovation that will more effectively allow consumers to achieve their goals. (c) For purposes of this section, the following definitions shall apply: (1) "Financial management services" means services or functions that assist the participant to manage and direct the distribution of funds contained in the individual budget, and ensure that the participant has the financial resources to implement his or her IPP throughout the year. These may include, but are not limited to, bill paying services and activities that facilitate the employment of service and support workers by the participant, including, but not limited to, fiscal accounting, tax withholding, compliance with relevant state and federal employment laws, and expenditure reports. The department shall establish The financial management services provider shall meet the requirements of Sections 58884, 58886, and 58887 of Title 17 of the California Code of Regulations and other specific qualifications that shall be required of a financial management services provider established by the department . The costs of financial management services shall be paid by the participant out of his or her individual budget. (2) "Independent facilitator" means a conflict-of-interest-free person, selected and directed by the participant, who may assist the participant in making informed decisions about the individual budget, and in locating, accessing, and coordinating services and supports consistent with the participant's IPP. He or she is available to assist in identifying immediate and long-term needs, developing options to meet those needs, leading or participating leading, participating, or advocating on behalf of the participant in the person-centered planning process and development of the IPP, and obtaining identified services and supports. The costs of the independent facilitator shall be paid by the participant out of his or her individual budget. An independent facilitator shall receive training in the principles of self-determination and the responsibilities described in this paragraph at his or her own cost. (3) "Individual budget" budget amount " means the amount of funding available to the participant for the purchase of services and supports necessary to implement the IPP. The individual budget amount shall be constructed determined using a fair, equitable, and transparent methodology. (4) "IPP" means individual program plan plan, as described in Section 4646 . (5) "Participant" means an individual, and when appropriate, his or her parents, legal guardian or conservator, or authorized representative, who has been deemed eligible for, and has voluntarily agreed to participate in, the Self-Determination Program. (6) "Self-determination" means 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. Self-determination services and supports are designed to assist the participant to achieve personally defined outcomes in community settings that promote inclusion. The Self-Determination Program shall only fund services and supports that are approved by the federal Centers for Medicare and Medicaid Services has determined are eligible for federal financial participation . (d) Participation in the Self-Determination Program is fully voluntary. A consumer may choose to participate in, and may choose to leave, the Self-Determination Program at any time. A regional center may not require or prohibit participation in the Self-Determination Program as a condition of eligibility for, or the delivery of, services and supports otherwise available under this division. Participation in the Self-Determination Program shall be available to any regional center consumer who meets the following eligibility requirements: (1) The participant is three years of age or older. (2) The participant has a developmental disability, as defined in Section 4512. (3) The participant does not live in a licensed long-term health care facility, as defined in paragraph (44) of subdivision (a) of Section 54302 of Title 17 of the California Code of Regulations. An individual, and when appropriate his or her parent, legal guardian or conservator, or authorized representative, who is not eligible to participate in the Self-Determination Program pursuant to this paragraph may request that the regional center provide person-centered planning services in order to make arrangements for transition to the Self-Determination Program Program, provided that he or she is eligible for the California Community Transitions Project . In that case, the regional center shall initiate person-centered planning services within 60 days of that request. (4) The participant agrees to all of the following terms and conditions: (A) The participant shall receive an orientation to the Self-Determination Program prior to enrollment enrollment, which includes the principles of self-determination, the role of the independent facilitator and the financial management services provider, person-centered planning, and development of a budget . (B) The participant shall agree to utilize the services and supports available within the Self-Determination Program only when generic services and supports cannot be accessed are not available . (C) The participant shall only use purchase services and supports necessary to implement his or her IPP and shall agree to comply with any and all other terms and conditions for participation in the Self-Determination Program described in this section. (D) The participant shall manage Self-Determination Program services and supports within the individual budget amount. (E) The participant shall utilize the services of the a conflict-of-interest-free financial management services provider of his or her own choosing and who is vendored by a regional center . (F) The participant may utilize the services of a conflict-of-interest-free independent facilitator of his or her own choosing for the purpose of providing services and functions as described in paragraph (2) of subdivision (c). The financial management services provider shall determine that the independent facilitator is adequately trained and otherwise qualified. If the participant elects not to use an independent facilitator, he or she may use a regional center service coordinator of his or her choosing to provide the services and functions described in paragraph (2) of subdivision (c). (e) A participant who is not Medi-Cal eligible may participate in the Self-Determination Program and receive self-determination services and supports if all other program eligibility requirements are met and the services and supports are otherwise eligible for federal financial participation . (f) An individual receiving services and supports under the self-determination projects pilot programs authorized pursuant to Section 13 of Chapter 1043 of the Statutes of 1998, as amended, may elect to continue to receive self-determination services and supports pursuant to this section. An individual who participates in the Self-Determination Program may elect to continue to receive self-determination services and supports if he or she transfers to another regional center catchment area. section or the regional center shall provide for the participant's transition from the self-determination pilot program to other services and supports. This transition shall include the development of a new IPP that reflects the services and supports necessary to meet the individual's needs. The regional center shall ensure that there is no gap in services and supports during the transition period. (g) The additional federal financial participation funds generated by individuals participating in the Self-Determination Program pursuant to this section shall be used to offset the administrative costs of the program, including, but not limited to, training for consumers, family members, and regional center staff, caseload ratio improvement, and costs associated with the participant's initial person-centered planning meeting and development of the participant's initial budget amount. (g) ( h) If at any time during participation in the Self-Determination Program a regional center determines that a participant is no longer eligible to continue in, or a participant voluntarily chooses to exit, the Self-Determination Program, the regional center shall provide for the participant's transition from the Self-Determination Program to other services and supports. This transition shall include the development of a new IPP that reflects the services and supports necessary to meet the individual's needs. The regional center shall ensure that there is no gap in services and supports during the transition period. (h) ( i) An individual determined to be ineligible for or who voluntarily exits the Self-Determination Program shall be permitted to return to the Self-Determination Program upon meeting all applicable eligibility criteria and upon approval of the participant's IPP planning team, as described in subdivision (j) of Section 4512. An individual who has voluntarily exited the Self-Determination Program may not return to the program for at least 12 months. (j) An individual who participates in the Self-Determination Program may elect to continue to receive self-determination services and supports if he or she transfers to another regional center catchment area. (i) ( k) The IPP team shall utilize the person-centered planning process to develop the IPP for a participant. The IPP shall detail the goals and objectives of the participant that are to be met through the purchase of participant-selected services and supports. The IPP team shall determine the individual budget amount to ensure the budget amount assists the participant to achieve the outcomes set forth in his or her IPP and ensures his or her health and safety. The completed individual budget amount shall be attached to the IPP. (j) ( l ) The participant shall implement his or her IPP, including choosing and purchasing the services and supports allowable under this section necessary to implement the plan. A participant is exempt from Section 4783, the Family Cost Participation Program, and the cost control restrictions, including, but not limited to, restrictions regarding the purchases of services and supports pursuant to Sections 4648.35, 4648.5, and 4659, subparagraph (B) of paragraph (3) of subdivision (c) of Section 4685, Sections 4648.55, 4686.2, 4686.5, and 4689, and purchase of services best practices enacted pursuant to Section 4620.3 4648.5 and 4686.5 . A regional center shall not prohibit the purchase of any service or support that is otherwise allowable under this section. (k) ( m) A participant shall have all the rights established in Sections 4646 to 4646.6, inclusive, and Chapter 7 (commencing with Section 4700). (l) The department, in consultation with stakeholders, shall develop a methodology for individual budgets that ensures the budgets are computed in a fair, transparent, and equitable manner and are based on consumer characteristics and needs, and a method for adjusting individual budgets to address a participant's unanticipated needs. In developing this methodology, the department shall ensure that budgets of all participants are cost neutral in the aggregate within each regional center. (m) The IPP team, using the methodology developed in subdivision (l), shall determine the individual budget for the participant. That individual budget amount shall be available to the participant each year for the purchase of program services and supports until a new individual budget has been determined. An individual budget shall be calculated no more than once in a 12-month period, unless revised to reflect the unanticipated needs of the participant. The individual budget shall be distributed among uniform budget categories developed by the department in consultation with stakeholders. (n) (1) During the first two years of the Self-Determination Program, the individual budget amount shall equal 98 percent of the annual purchase of service costs for the individual. The annual costs shall reflect the average annual costs for the previous two fiscal years for the individual. In addition, the IPP team may adjust the individual budget amount to address a change in the participant's circumstances. (2) Prior to the end of the second year of the Self-Determination Program, the department, in consultation with stakeholders, shall develop one or more additional methodologies for individual budget amounts that are computed in a fair, transparent, and equitable manner and are based on consumer characteristics and needs, and that include a method for adjusting individual budget amounts to address a participant's change in circumstances. (o) The IPP team, using any of the methodologies developed in subdivision (n), shall determine the individual budget amount for the participant. That individual budget amount shall be available to the participant each year for the purchase of program services and supports until a new individual budget amount has been determined. An individual budget amount shall be calculated no more than once in a 12-month period, unless revised to address a participant's change in circumstances. The IPP team shall annually ascertain from the participant whether there are any circumstances that require a change to the annual individual budget amount. The individual budget amount shall be distributed among uniform budget categories developed by the department in consultation with stakeholders and in accordance with the timing of the expenditures anticipated in the IPP. (n) ( p) Annually, participants may transfer up to 20 10 percent of the funds originally distributed to any budget category set forth in subdivision (m) , (o) to another budget category or categories. Transfers in excess of 20 10 percent of the original amount allocated to any budget category may be made upon the approval of the regional center or the participant's IPP team. Regional centers or the IPP team may only deny a transfer if necessary to protect the health and safety of the participant. (o) ( q) Consistent with the implementation date of the IPP, the IPP team shall annually ascertain from the participant whether there are any circumstances that require a change to the annual individual budget amount . Based on that review, the IPP team shall calculate a new individual budget amount consistent with the methodology identified in subdivision (l) ( n) . (p) ( r) On or before December 31, 2014, the department shall apply for federal Medicaid funding for the Self-Determination Program by applying for a state plan amendment, an amendment to a current home- and community-based waiver for individuals with developmental disabilities, for a new waiver, or by seeking to maximize federal financial participation through other means. Contingent upon approval of federal funding, the Self-Determination Program shall be established. The department shall adopt regulations to implement the procedures set forth in this section. (q) ( s) The department, in consultation with stakeholders, shall develop informational materials about the Self-Determination Program. The department shall ensure that regional centers are trained in the principles of self-determination, the mechanics of the Self-Determination Program, and the rights of consumers and families as candidates for, and participants in, the Self-Determination Program. (r) ( t) Each regional center shall be responsible for implementing the Self-Determination Program as a term of its contract under Section 4629. As part of implementing the program, the regional center shall do all of the following: (1) Contract with local consumer or family-run consumer organizations to conduct outreach and training through local meetings or forums to provide regional center consumers and their families with to provide information about the Self-Determination Program and to help ensure that the program is available to a diverse group of participants, with special outreach to underserved communities. (2) Collaborate with the local consumer or family-run organizations identified in paragraph (1) to jointly conduct training about the Self-Determination Program. (2) (3) Advance funds to a financial management services provider to facilitate participation in the Self-Determination Program, as determined necessary by a participant's IPP team. when the participant's IPP team determines it is necessary to enable participation in the Self-Determination Program. The regional center shall not, at any one time, advance more than 15 percent of the budget amount. (s) ( u) The financial management services provider shall provide the participant, or his or her authorized representative, participant and the regional center service coordinator with a monthly individual budget statement that describes the amount of funds allocated by budget category, the amount spent in the previous 30-day period, and the amount of funding that remains available under the participant's individual budget amount . (t) ( v) Only the financial management services provider is required to apply for vendorization in accordance with Subchapter 2 (commencing with Section 54300) of Chapter 3 of Title 17 of the California Code of Regulations, for the Self-Determination Program. All other service providers shall have applicable state licenses, certifications, or other state required documentation, but are exempt from the vendorization requirements set forth in Title 17 of the California Code of Regulations when serving participants in the Self-Determination Program, and shall not be on the federal debarment list . The financial management services provider shall ensure and document that all service providers meet specified requirements for any service that may be delivered to the participant. (u) (w) (1) A participant may request, at no charge to the participant or the regional center, criminal history background checks for persons seeking employment as a provider of services and supports and providing direct care services and supports to the participant. (1) Criminal participant. The criminal history record checks pursuant to this subdivision shall be performed and administered as described in subdivision (b) and subdivisions (d) to (h), inclusive, of Section 4689.2, and Sections 4689.4 to 4689.6, inclusive, and shall apply to vendorization of providers and hiring of employees to provide services and supports for family home agencies and family homes. (2) The of Section 4689.2. The department may enter into a written agreement with the Department of Justice to implement this subdivision. (2) Upon receipt of information relating to the criminal history background check, the department shall do one of the following: (A) Advise the participant that the person seeking employment declined to allow any information to be reported. (B) With the consent of the person who is seeking employment, provide the participant with a copy of the criminal history background check. (x) To ensure the effective implementation of the Self-Determination Program and facilitate the sharing of best practices and training materials commencing with the implementation of the Self-Determination Program, local and statewide advisory committees shall be established as follows: (v) ( 1) Each regional center shall establish a local volunteer advisory committee to provide oversight of the Self-Determination Program. The regional center , and the area board , and the Office of Clients' Rights Advocacy of Disability Rights California shall each appoint one-third one-half of the membership of the committee , which . The committee shall consist of the regional center clients' rights advocate, consumers, family members, clients' rights advocates and other advocates, and community leaders. A majority of the committee shall be consumers and their family members. The committee shall reflect the multicultural diversity and geographic profile of the catchment area. The committee shall review the development and ongoing progress of the Self-Determination Program, including whether the program advances the principles of self-determination and is operating consistent with the requirements of this section, and may make ongoing recommendations for improvement to the regional center and the department. (w) (2) The State Council on Developmental Disabilities shall form a volunteer committee, to be known as the Statewide Self-Determination Advisory Committee, comprised of the chairs of the 21 local advisory committees or their designees. The council shall convene the Statewide Self-Determination Advisory Committee at least semiannually by teleconference or other means established by the council, to identify self-determination best practices, effective consumer and family training materials, implementation concerns, systemic issues, and ways to enhance the program. The council shall synthesize information received from the Statewide Self-Determination Advisory Committee, local advisory committees, and other sources, shall share the information with consumers, families, regional centers and the department, and shall make recommendations, as appropriate, to increase the program's effectiveness in furthering the principles of self-determination. ( y) Commencing January 10, 2016, the department shall annually provide the following information to the appropriate policy and fiscal committees of the Legislature: (1) Number and characteristics of participants, by regional center. (2) Types and ranking of services and supports purchased under the Self-Determination Program, by regional center. (3) Range and average of individual budgets budget amounts , by regional center, including adjustments to the budget amounts to address unanticipated need change in circumstances . (4) Information regarding participant satisfaction under the Self-Determination Program and, when data is available, the traditional service delivery system, by regional center. (5) The proportion of participants who report that their choices and decisions are respected and supported. (6) The proportion of participants who report that they are able to recruit and hire qualified service providers. (7) ( 4) The number and outcome of individual budget amount appeals, by regional center. (8) ( 5) The number and outcome of fair hearing appeals, by regional center. (9) ( 6) The number of participants who voluntarily withdraw from the Self-Determination Program and a summary of the reasons why, by regional center. (10) ( 7) The number of participants who are subsequently determined to no longer be eligible for the Self-Determination Program and a summary of the reasons why, by regional center. (11) Identification of barriers to participation and recommendations for program improvements. (12) A comparison of average annual expenditures for individuals with similar characteristics not participating in the Self-Determination Program. (x) ( z) The State Council on Developmental Disabilities, in collaboration with the protection and advocacy agency identified in Section 4900 and the federally funded University Centers for Excellence in Developmental Disabilities Education, Research, and Service, may work with regional centers to survey participants regarding participant satisfaction under the Self-Determination Program, and, when data is available, the traditional service delivery system, including the proportion of participants who report that their choices and decisions are respected and supported and who report that they are able to recruit and hire qualified service providers, and to identify barriers to participation and recommendations for improvement. The council shall issue a report to the Legislature , in compliance with Section 9795 of the Government Code, no later than three years following the approval of the federal funding on the status of the Self-Determination Program authorized by this section, and provide recommendations to enhance the effectiveness of the program. This review shall include the program's effectiveness in furthering the principles of self-determination, including all of the following: (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 valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community. (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.