BILL ANALYSIS Ó SENATE HUMAN SERVICES COMMITTEE Senator Leland Y. Yee, Chair BILL NO: SB 468 S AUTHOR: Emmerson B VERSION: April 15, 2013 HEARING DATE: April 23, 2013 4 FISCAL: Yes 6 8 CONSULTANT: Mareva Brown SUBJECT Developmental services: statewide Self-Determination Program SUMMARY This bill requires the Department of Developmental Services (DDS) to implement a statewide Self-Determination Program to provide participants and their families with an individual budget to purchase service and supports necessary to implement the consumer's Individual Program Plan. Implementation is contingent upon federal funding. Requires program participants to agree to manage self-determination services within the individual budget amount and with the assistance of an independent financial manager, vendorized by the regional center, among other agreements. Requires the State Council on Developmental Disabilities to issue to the Legislature a report on the program and requires DDS to report data on the program to the Legislature, as specified. ABSTRACT Continued--- STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageB 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.) 2) Establishes a system of nonprofit Regional Centers to provide fixed points of contact in the community for all persons with developmental disabilities and their families, to coordinate services and supports best suited to them throughout their lifetime. (WIC 4620) 3) Establishes an Individual Program Plan (IPP) 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) 4) Establishes, contingent upon approval of a federal waiver, the Self-Directed Services Program (SDS Program) statewide to provide participants, within an individual budget, greater control over needed services and supports. (WIC 4685.7) 5) Defines the duties of a financial services manager, and other support personnel; provides a definition of the types of services available through an individual budget; identifies the purpose and formula for funding a risk pool to cover unanticipated expenses, and other elements of the program, as specified. (WIC 4685.7) 6) Establishes that a consumer may choose between one of two individual budget amounts and requires that methodologies for determining those two budgets amounts be detailed in departmental regulations, as follows: a. One individual budget amount shall equal 90 percent of the annual purchase of services STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageC costs for the individual. The annual costs shall reflect the average annual costs for the previous two fiscal years for the individual. b. One individual budget amount shall equal 90 percent of the annual per capita purchase of service costs for the previous two fiscal years for consumers with similar characteristics, who do not receive services through the SDS Program, based on factors including, but not limited to, age, type of residence, type of disability and ability, functional skills, and whether the individual is in transition. This budget methodology shall be constructed using data available from DDS, as specified. 7) Defines the categories of services that an individual may fund through the individual budget to include community living, health and clinical services, employment, training and education, environmental and medical supports and transportation. 8) Provides that an individual who is determined to be ineligible, or who voluntarily exits the SDS Program, shall be permitted to return to the SDS Program upon meeting all applicable eligibility criteria and after a minimum of 12 months' time has elapsed. 9) Creates other requirements and guidelines, as specified, for the program. This bill: 1) Makes a series of Legislative findings and declarations about the efficacy of and need for self-determination services and the intent that the program will continue after the initial three-year phase-in of the program. 2) Requires DDS to implement a statewide Self-Determination Program to provide participants and their families with an individualized budget that provides increased flexibility and choice, greater control over decisions, resources and desired STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageD services, as specified. 3) Requires that the program be phased in over three years, initially serving up to 2,500 regional center consumers and thereafter to be available on a voluntary basis to all regional center consumers. 4) Requires DDS to ensure the following: a. Self-Determination is a choice for up to 2,500 regional center consumers. b. Participants reflect the diversity of disability, ethnicity and geography of the state. c. The program is cost-neutral in the aggregate. d. A statewide method of administration and of determining comparable services. e. Oversight of the self-determined funds and achievement of consumer outcomes over time. f. Increased consumer and family control over which services best meet their needs and the IPP objectives. g. Comprehensive person-centered planning, including an individual budget and services that are outcome-based. h. Consumer and family training to ensure understanding of the planning process and management of budgets, services and staff. i. A choice of independent facilitators who can assist with the person-centered planning process and financial management services providers who can assist with payments and provide employee-related services. j. Innovation that will more effectively allow consumers to achieve their goals. 5) Defines the following terms related to Self-Determination Services: a. "Financial management services" means a service to manage and direct the distribution of funds contained in the individual budget, as specified. The department shall establish specific qualifications that shall be required of a financial management services provider. STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageE b. "Independent facilitator" means a 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 consistent with the participant's IPP, as specified. c. "Individual budget" means the funding available to the participant to purchase services necessary to implement the IPP. The individual budget shall be constructed using a fair, equitable, and transparent methodology. d. "IPP" means individual program plan. e. "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. f. "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. 6) Establishes that the Self-Determination Program shall only fund services and supports that are approved by the federal Center for Medicare and Medicaid Services. 7) Requires that participation in the Self-Determination Program be fully voluntary and be available to any eligible regional center consumer. A consumer may choose to participate in, and may choose to leave, the program at any time. A regional center may not require or prohibit participation as a condition of eligibility services and supports otherwise available under this division. 8) Defines eligibility for the program as follows: a. The participant is three years of age or older. b. The participant has a developmental STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageF disability, as defined in Section 4512. c. The participant does not live in a licensed long-term health care facility, as defined. 9) Requires that an individual who is not eligible to participate in the Self-Determination Program because they live in a long-term health care may request that the regional center make arrangements for transition to the Self-Determination Program, as specified. In that case, the regional center shall initiate person-centered planning services within 60 days of that request. 10) Requires a participant to agree to all of the following terms and conditions: a. Receive an orientation to the Self-Determination Program prior to enrollment. b. Agree to utilize the services and supports available within the Self-Determination Program only when generic services and supports cannot be accessed. c. Use only 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, as specified. d. Shall manage Self-Determination Program services and supports within the individual budget amount. e. Must use the services of the conflict-of-interest-free financial management services provider of his or her own choosing. f. May use the services of a conflict-of-interest-free independent facilitator of his or her own choosing, as specified. The financial management services provider shall determine that the independent facilitator is adequately trained and otherwise qualified. 11) Requires that 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 STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageG are met. 12) Requires that individuals who are participating in the 1998 self-directed pilot project be included in the new Self-Determination Project, and that a consumer who elects to participate in the Self-Determination Project may transfer to another regional center without losing the right to participate in the program. 13) Requires that when a participant exits the program, either voluntarily or because a regional center determines that a participant is no longer eligible to continue, the regional center shall provide for the participant's transition from the Self-Determination Program to other services and supports, including developing a new IPP. 14) Requires that if a participant exits the program, the regional center ensures that there is no gap in services and supports during the transition period. 15) Requires that a participant who exits the program for any reason be permitted to return upon meeting eligibility criteria and approval of the IPP team, as specified. 16) Requires that a consumer's IPP team detail the goals and objectives that are to be met through participant-selected services and design the individual budget to ensure it helps participants achieve the outcomes set forth the IPP, as specified. The completed individual budget shall be attached to the IPP. 17) Requires that the participant shall implement his or her IPP, including choosing the services and supports, as specified. 18) Exempts participants from the Family Cost Participation Program and other cost control restrictions, including purchases of services that were suspended in the 2009 budget, rate reductions, and others, as specified. Bars a regional center from prohibiting the purchase of any service or support STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageH that is otherwise allowable. 19) Requires that a participant have all the appeal rights established under WIC 4700. 20) Requires DDS, in consultation with stakeholders, to develop a methodology that ensures individual 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. 21) Requires the department to ensure that budgets of all participants are cost neutral in the aggregate. 22) Requires the regional center's IPP team, using the methodology developed by DDS and the stakeholders, to determine the individual budget for the participant. 23) Requires that the individual budget amount be available to the participant each year until a new individual budget has been determined and provides that an individual budget be calculated no more than once in a 12-month period, unless revised to reflect the unanticipated needs of the participant. 24) Requires that the individual budget be distributed among uniform budget categories developed by the DDS in consultation with stakeholders. 25) Permits participants to transfer up to 20 percent of the funds originally distributed to any budget category, as defined, to another budget category or categories, as specified, and permits regional centers or the IPP team to deny a transfer only if necessary to protect the health and safety of the participant. 26) Requires an IPP team to annually ascertain from the participant whether there are any circumstances that require a change to the annual individual budget. 27) Requires DDS to apply on or before March 1, 2014, for federal Medicaid funding for the Self-Determination Program by applying for a state plan amendment, an amendment to a current home- and STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageI community-based waiver for individuals with developmental disabilities, for a new waiver, or by seeking to maximize federal financial participation through other means. 28) Provides that the establishment of the Self-Determination Program shall be contingent upon federal funding. 29) Requires DDS, in consultation with stakeholders, to develop informational materials about the Self-Determination Program, as specified. 30) Requires that each regional center's implementation of the Self-Determination Program be included in its contract with DDS and contain these requirements: a. Contract with local or family-run consumer organizations to conduct outreach and training, as specified. b. Advance funds to a financial management services provider to facilitate participation in the program, as determined by a participant's IPP team. 31) Requires the financial management services provider to give the participant and regional center, as specified, with a monthly individual budget statement describing the funds allocated by budget category, the amount spent in the previous 30-day period, and the amount of funding that remains available. 32) Requires that only the financial management services provider must apply for vendorization, as specified. All other service providers shall have applicable state licenses, certifications, or other state required documentation, but are exempt from the vendorization requirements. 33) Requires the financial management services provider to ensure and document that all service providers meet specified requirements for any service that may be delivered to the participant. 34) Requires that if a participant chooses to request a STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageJ 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 that the check be provided cost-free and according to current law, as specified. 35) Requires each regional center to establish a local advisory committee to provide oversight of the Self-Determination Program, as specified. 36) Requires DDS to annually provide data to the legislature beginning January 10, 2016, as specified, including: a. Number and characteristics of participants, by regional center. b. Types and ranking of services and supports purchased under the Self-Determination Program, by regional center c. Range and average of individual budgets, by regional center, including adjustments to the budget to address unanticipated need. d. Participant satisfaction, as specified. e. The number and outcome of individual budget appeals and fair hearing appeals by regional center. f. The number of participants who voluntary withdrew from the program, as well as those who were subsequently determined to no longer be eligible, and a summary of the reasons why, as specified. g. Identification of barriers to participation and recommendations for program improvements. h. A comparison of average annual expenditures for individuals with similar characteristics not participating in the Self-Determination Program. 37) Requires the State Council on Developmental Disabilities, in collaboration with others, as specified, to issue a report to the Legislature no later than three years following the approval of the federal funding on the status of the Self-Determination Program, and provide STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageK recommendations to enhance the effectiveness of the program. FISCAL IMPACT This bill has not been analyzed by a fiscal committee. BACKGROUND AND DISCUSSION Purpose of the bill The author states that this bill is intended to increase choices of services for families of consumers with developmental disabilities to allow them to have more control and flexibility in their service plans. This is important because due to our recent budget constraints and lack of funding, many types of effective services have been cut, according to the author. He states that this bill creates a Self-Determination Program, which will allow the consumer and parents to create a service plan that is more beneficial to the individual receiving the services. Regional Center system California's 21 nonprofit regional centers are part of a system of care for individuals with developmental disabilities overseen by DDS. With a proposed budget of $4.3 billion for community- based services in 2013-2014, DDS is responsible for coordinating care and providing services for more than 250,000 people who receive services and supports to live in their communities, as well as approximately 1,560 people who resided in developmental centers as of March 6, 2013. California's 21 regional centers are non-profit organizations that provide local services and supports to individuals through contracts with DDS. Regional centers provide diagnosis and assessment of eligibility and help 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). STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageL Self-Determination The concept of facilitating a way for individuals with developmental disabilities to choose their own services and supports, rather than be prescribed a list of customized services began in the mid 1990s. According to a 2007 Robert Wood Johnson Foundation report, the growing move toward de-institutionalization and the home and community based waivers associated with that move allowed states to serve more people. However, most states did not have the resources to meet the long-term care needs of everyone who sought help.<1> The foundation created a Self-Determination for Persons with Developmental Disabilities Program in 1996 to help 18 states implement a more cost-effective system, while simultaneously giving consumers and their families more choice in determining the services they receive. The program - inspired by the success of a 1993 self-determination grant that the foundation gave to the state of New Hampshire - authorized grant funding of up to $5 million nationwide. While each program was unique, they had common tenets including person-centered planning, an independent support broker, individual budgets and a designated fiscal intermediary. An outcomes study commissioned by the foundation found improvement in some but not all quality of life indicators. A related study found that a system wide approach and the availability of direct support workers were critical factors in the success of self-determination initiatives. Since then, at least 29 states have implemented self-determination programs. Self-determination in California In 1998 the Legislature passed a Self-Determination Pilot Project that was conducted in five regional centers and included about 200 participants. A subsequent report to the legislature showed that the participants were happy and ------------------------- <1> http://www.rwjf.org/content/dam/farm/reports/program_results _reports/2007/rwjf70028 STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageM had experienced more freedom and responsibility in controlling the direction of their services and their life choices. The report also indicated that good self-determination practices required intensive person-centered planning, collaboration, and follow-along support. Since then, there have been several attempts to bring the program statewide, including a 2005 effort that was signed by the Governor but never implemented due to problems obtaining a federal waiver. In 2009, amid stakeholder budget workgroup meetings that were directed to find hundreds of millions of dollars of cuts within the DDS system, a suggestion was made to use the self-determination idea to trim costs and provide greater independence for consumers. This concept, dubbed the Individual Choice Budget, would have had to achieve savings in order to be implemented within the budget. Despite extensive conversations, and a proposal to fund the individual budget at 90 percent of a consumer's existing services, talks broke down over how to achieve savings without making the program mandatory for all consumers, and over how to fairly craft an individual budget. In 2011, AB 1244 (Chesbro) attempted to rewrite the existing statute in order to move DDS beyond the waiver impasse with the federal government. This bill's language reflects a combination of SB 1244 and existing statute but leaves to DDS to determine how to calculate the individual budget. It also eliminates the language around employment of support workers and identifies new federal waivers that could be used to support the program. The sponsor has stated that CMS has approved other, similar programs in other states since California originally applied for a waiver for self-determination services and that this bill provides additional vehicles that are more likely to succeed. Related legislation AB 1244 (Chesbro, 2011) would have created a self-determination program to provide individuals with a single, capitated funding allocation to purchase services that support goals identified in the IPP. It would have STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageN replaced the existing statutory language creating a statewide self-directed services program, which required a federal waiver for implementation. It died in the Senate Human Services Committee. AB 131 (Omnibus health trailer bill, Chapter 80, Statutes of 2005) created a statewide self-directed services project contingent upon approval of a waiver for federal funding by the Centers for Medicaid and Medicare Services. The waiver application remains pending. SB 1038 (Thompson, Chapter 1043 Statutes of 1998) created a 3-year pilot project for local self-determination programs and re-appropriated $750,000 to DDS from specified funds appropriated pursuant to the Budget Act of 1998 for these programs. Comments Individual budget Concerns have been raised about the lack of oversight of the consumer's budget to ensure that funds are distributed equitably throughout the year. While the author states this is an implied responsibility of the independent fiscal manager, staff suggests clarifying that role: Staff recommends the following amendment: 4685.8. (c) (1) "Financial management services" means a service or function that assists 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. This may include, but is not limited to, federal, state, and local tax withholding payments, bill paying services and activities that facilitate the employment of support workers by the participant, including, but not limited to fiscal accounting, and expenditure reports. The department shall establish specific qualifications which shall be required of a financial management services provider. Cost neutrality STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageO This bill requires the Self-Determination program achieve budget neutrality in the aggregate. Concerns have been raised about how to ensure neutrality across regional centers. Staff suggests cost neutrality be achieved within each regional center. Staff recommends the following amendment: 4658.8 (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 . Number of participants This bill establishes that initially, "up to 2,500 regional center consumers may participate in the Self-Determination Program statewide, and that regional centers must continue to add any clients who want to participate in the program after three years." Should this bill move forward, Staff recommends that the author work with stakeholders to clarify how to allocate the slots across the regional center system so the cap is met but not exceeded during the first three years. Budget methodology This bill leaves to DDS the methodology for determining the individual budget. Historically, this issue has been controversial. The existing statute required the consumer be provided two budget calculations - one based on the consumer's previous two-year purchase of service average and the other based on the average cost of services for consumers with similar needs for the prior two fiscal years. The consumer could then choose which budget to accept. AB 1244 (Chesbro, 2011) established the same budget methodology. While the author has deliberately left this issue to the Department to decide in SB 468, staff suggests providing some direction to DDS in deciding the STAFF ANALYSIS OF SENATE BILL 468 (Emmerson) PageP methodology. Should this bill move forward, Staff recommends that the author work with stakeholders to better define a methodology or methodologies that DDS should consider in establishing the individual budget. POSITIONS Support: Disability Rights California (sponsor) Autism Society Los Angeles Easter Seals California State Council on Developmental Disabilities Oppose: None received -- END --