[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

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AMENDED IN SENATE APRIL 25, 2013

AMENDED IN SENATE APRIL 15, 2013

SENATE BILLNo. 468

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Introduced by Senators Emmerson and Beall

(Coauthor: Assembly Member Blumenfield)

February 21, 2013

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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 support and services 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, 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 regional center consumers. The bill would require the department to, among other things, apply for federal funding for the program by March 1, 2014.

Under the bill, program participants would receive an individual budget, 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 within the individual budget amount. Under the bill, 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 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 advisory committee to provide oversight of the project. 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:

P2    1

SECTION 1.  

The Legislature finds and declares all of the 
2following:

3(a) In 1998, the Legislature expanded the Lanterman 
4Developmental Disabilities Services Act to include a 
5self-determination pilot program. That pilot program was continued 
6by the Legislature in 2002 and 2003. However, the pilot program 
7was only available at five regional centers and the number of 
8individuals served by the self-determination pilot program remains 
9small, about 200 regional center consumers.

P3    1(b) As reflected in the State Department of Developmental 
2Services 2002 Report to the Legislature, the pilot program remains 
3an innovative, cost effective and successful way of providing 
4services to regional center consumers and their families. The 
5findings in the report show that self-determination pilot program 
6participants were happy and experienced more freedom and 
7responsibility in controlling the direction of their services and life 
8choices, and the program was cost neutral in the aggregate. The 
9report also found that good self-determination requires intensive 
10person-centered planning, collaboration, and follow-along services 
11and supports.

12(c) Most other states have self-directed or self-determination 
13services as a model for providing services. Many California 
14consumers and families have asked for a statewide expansion of 
15the pilot program believing it will do the following: increase 
16innovative and effective services, eliminate bureaucracy, and 
17increase choices for consumers and parents, thereby allowing them 
18to increase their control of services and supports by easily 
19navigating increasingly complex service systems.

20(d) The intent of this act is to allow for voluntary participation 
21in the Self-Determination Program while ensuring that the program 
22is available to all consumers regardless of geographic location, 
23economic or educational background, or race or ethnicity, and 
24ensuring a consistent statewide method of administration and 
25comparable services. To ensure these outcomes are achieved, it is 
26the intent of the Legislature that the State Department of 
27Developmental Services and local advisory boards be responsible 
28for oversight and monitoring of funds used for the 
29Self-Determination Program and the achievement of consumer 
30outcomes.

31(e) In addition, the intent of this act is that the
32Self-Determination Program be phased in over a three-year period 
33and that the program will continue to be available to all consumers 
34as an option after the initial phase-in period ends.

35

SEC. 2.  

Section 4685.8 is added to the Welfare and Institutions 
36Code, to read:

37

4685.8.  

(a) The department shall implement a statewide
38Self-Determination Program. The Self-Determination Program 
39shall be available in every regional center catchment area to provide 
40participants and their families, within an individual budget, 
P4    1increased flexibility and choice, and greater control over decisions, 
2resources, and needed and desired services and supports to 
3implement their IPP. The statewide Self-Determination Program 
4shall be phased in over three years, initially serving up to 2,500 
5regional center consumers, and thereafter shall be available on a 
6voluntary basis to all regional center consumers.

7(b) The department in establishing the statewide program shall 
8ensure the following:begin delete

9(1) That self-determination is available as a choice for up to 
102500 regional center consumers.end delete

11(1) Participants in the program reflect the disability, ethnic, and 
12geographic diversity of the state.

13(2) The program is cost neutral in the aggregate.

14(3) A statewide method of administration and determining 
15comparable services.

16(4) Oversight of expenditure of self-determined funds and the 
17achievement of consumer outcomes over time.

18(5) Increased consumer and family control over which services 
19best meet their needs and the IPP objectives.

20(6) Comprehensive person-centered planning, including an 
21individual budget and services that are outcome based.

22(7) Consumer and family training to ensure understanding of 
23the planning process and management of budgets, services, and 
24staff.

25(8) Choice of independent facilitators who can assist with the 
26person-centered planning process and financial management 
27services providers who can assist with payments and provide 
28employee-related services.

29(9) Innovation that will more effectively allow consumers to 
30achieve their goals.

31(c) For purposes of this section, the following definitions shall 
32apply:

33(1) “Financial management services” means services or 
34functions thatbegin delete assistsend deletebegin insert assistend insert the participant to manage and direct 
35the distribution of funds contained in the individualbegin delete budgetend deletebegin insert budget, 
36and ensure that the participant has the financial resources to 
37implement his or her IPP throughout the yearend insert. These may include, 
38but are not limited to, bill paying services and activities that 
39facilitate the employment of service and support workers by the 
40participant, including, but not limited to, fiscal accounting, tax 
P5    1withholding, and expenditure reports. The department shall 
2establish specific qualifications that shall be required of a financial 
3management services provider.

4(2) “Independent facilitator” means a person, selected and 
5directed by the participant, who may assist the participant in 
6making informed decisions about the individual budget, and in 
7locating, accessing, and coordinating services consistent with the 
8participant’s IPP. He or she is available to assist in identifying 
9immediate and long-term needs, developing options to meet those 
10needs, leading or participating in the person-centered planning 
11process and development of the IPP, and obtaining identified 
12services and supports.

13(3) “Individual budget” means the amount of funding available 
14to the participant for the purchase of services and supports 
15necessary to implement the IPP. The individual budget shall be 
16constructed using a fair, equitable, and transparent methodology.

17(4) “IPP” means individual program plan.

18(5) “Participant” means an individual, and when appropriate, 
19his or her parents, legal guardian or conservator, or authorized 
20representative, who has been deemed eligible for, and has 
21voluntarily agreed to participate in, the Self-Determination 
22Program.

23(6) “Self-determination” means a voluntary delivery system 
24consisting of a defined and comprehensive mix of services and 
25supports, selected and directed by a participant through 
26person-centered planning, in order to meet all or some of the 
27objectives in his or her IPP. Self-determination services and 
28supports are designed to assist the participant to achieve personally 
29defined outcomes in community settings that promote inclusion. 
30The Self-Determination Program shall only fund services and 
31supports that are approved by the federal Center for Medicare and 
32Medicaid Services.

33(d) Participation in the Self-Determination Program is fully 
34voluntary. A consumer may choose to participate in, and may 
35choose to leave, the Self-Determination Program at any time. A 
36regional center may not require or prohibit participation in the
37Self-Determination Program as a condition of eligibility for, or 
38the delivery of, services and supports otherwise available under 
39this division. Participation in the Self-Determination Program shall 
P6    1be available to any regional center consumer who meets the 
2following eligibility requirements:

3(1) The participant is three years of age or older.

4(2) The participant has a developmental disability, as defined 
5in Section 4512.

6(3) The participant does not live in a licensed long-term health 
7care facility, as defined in paragraph (44) of subdivision (a) of 
8Section 54302 of Title 17 of the California Code of Regulations. 
9An individual, and when appropriate his or her parent, legal 
10guardian or conservator, or authorized representative, who is not 
11eligible to participate in the Self-Determination Program pursuant 
12to this paragraph may request that the regional center provide 
13person-centered planning services in order to make arrangements 
14for transition to the Self-Determination Program. In that case, the 
15regional center shall initiate person-centered planning services 
16within 60 days of that request.

17(4) The participant agrees to all of the following terms and 
18conditions:

19(A) The participant shall receive an orientation to the 
20Self-Determination Program prior to enrollment.

21(B) The participant shall agree to utilize the services and 
22supports available within the Self-Determination Program only 
23when generic services and supports cannot be accessed.

24(C) The participant shall only use services and supports 
25necessary to implement his or her IPP and shall agree to comply 
26with any and all other terms and conditions for participation in the 
27Self-Determination Program described in this section.

28(D) The participant shall manage Self-Determination Program 
29services and supports within the individual budget amount.

30(E) The participant shall utilize the services of the 
31conflict-of-interest-free financial management services provider 
32of his or her own choosing.

33(F) The participant may utilize the services of a 
34conflict-of-interest-free independent facilitator of his or her own 
35choosing for the purpose of providing services and functions as 
36described in paragraph (2) of subdivision (c). The financial 
37management services provider shall determine that the independent 
38facilitator is adequately trained and otherwise qualified.

39(e) A participant who is not Medi-Cal eligible may participate 
40in the Self-Determination Program and receive self-determination 
P7    1services and supports if all other program eligibility requirements 
2are met.

3(f) An individual receiving services and supports under the 
4self-determination projects authorized pursuant to Section 13 of 
5Chapter 80 of the Statutes of 1998, as amended, may elect to 
6continue to receive self-determination services and supports 
7pursuant to this section. An individual who participates in the 
8Self-Determination Program may elect to continue to receive 
9self-determination services and supports if he or she transfers to 
10another regional center catchment area.

11(g) If at any time during participation in the Self-Determination 
12Program a regional center determines that a participant is no longer 
13eligible to continue in, or a participant voluntarily chooses to exit, 
14the Self-Determination Program, the regional center shall provide 
15for the participant’s transition from the Self-Determination Program 
16to other services and supports. This transition shall include the 
17development of a new IPP that reflects the services and supports 
18necessary to meet the individual’s needs. The regional center shall 
19ensure that there is no gap in services and supports during the 
20transition period.

21(h) An individual determined to be ineligible for or who 
22voluntarily exits the Self-Determination Program shall be permitted 
23to return to the Self-Determination Program upon meeting all 
24applicable eligibility criteria and upon approval of the participant’s 
25IPP team, as described in subdivision (j) of Section 4512.

26(i) The IPP team shall utilize the person-centered planning 
27process to develop the IPP for a participant. The IPP shall detail 
28the goals and objectives of the participant that are to be met through 
29the purchase of participant-selected services and supports. The 
30IPP team shall determine the individual budget to ensure the budget 
31assists the participant to achieve the outcomes set forth in his or 
32her IPP and ensures his or her health and safety. The completed 
33individual budget shall be attached to the IPP.

34(j) The participant shall implement his or her IPP, including 
35choosing the services and supports allowable under this section 
36necessary to implement the plan. A participant is exempt from 
37Section 4783, the Family Cost Participation Program, and cost 
38control restrictions, including, but not limited to, purchases of 
39services and supports pursuant to Sections 4648.35, 4648.5, and 
404659, subparagraph (B) of paragraph (3) of subdivision (c) of 
P8    1Section 4685, Sections 4648.55, 4686.2, 4686.5, and 4689, and 
2purchase of services best practices enacted pursuant to Section 
34620.3. A regional center shall not prohibit the purchase of any 
4service or support that is otherwise allowable under this section.

5(k) A participant shall have all the rights established in Chapter 
67 (commencing with Section 4700).

7(l) The department, in consultation with stakeholders, shall 
8develop a methodology for individual budgets that ensures the 
9budgets are computed in a fair, transparent, and equitable manner 
10and are based on consumer characteristics and needs, and a method 
11for adjusting individual budgets to address a participant’s 
12unanticipated needs. In developing this methodology, the 
13department shall ensure that budgets of all participants are cost 
14neutral in the aggregatebegin insert within each regional centerend insert.

15(m) The IPP team, using the methodology developed in 
16subdivision (l), shall determine the individual budget for the 
17participant. That individual budget amount shall be available to 
18the participant each year for the purchase of program services and
19supports until a new individual budget has been determined. An 
20individual budget shall be calculated no more than once in a 
2112-month period, unless revised to reflect the unanticipated needs 
22of the participant. The individual budget shall be distributed among 
23uniform budget categories developed by the department in 
24consultation with stakeholders.

25(n) Annually, participants may transfer up to 20 percent of the 
26funds originally distributed to any budget category set forth in 
27subdivision (m), to another budget category or categories. Transfers 
28in excess of 20 percent of the original amount allocated to any 
29budget category may be made upon the approval of the regional 
30center or the participant’s IPP team. Regional centers or the IPP 
31team may only deny a transfer if necessary to protect the health 
32and safety of the participant.

33(o) Consistent with the implementation date of the IPP, the IPP 
34team shall annually ascertain from the participant whether there 
35are any circumstances that require a change to the annual individual
36budget. Based on that review, the IPP team shall calculate a new 
37individual budget consistent with the methodology identified in 
38subdivision (l).

39(p) On or before March 1, 2014, the department shall apply for 
40federal Medicaid funding for the Self-Determination Program by 
P9    1applying for a state plan amendment, an amendment to a current 
2home- and community-based waiver for individuals with 
3developmental disabilities, for a new waiver, or by seeking to 
4maximize federal financial participation through other means. 
5Contingent upon approval of federal funding, the 
6Self-Determination Program shall be established. The department 
7shall adopt regulations to implement the procedures set forth in 
8this section.

9(q) The department, in consultation with stakeholders, shall 
10develop informational materials about the Self-Determination 
11Program. The department shall ensure that regional centers are 
12trained in the principles of self-determination, the mechanics of 
13the Self-Determination Program, and the rights of consumers and 
14families as candidates for, and participants in, the 
15Self-Determination Program.

16(r) Each regional center shall be responsible for implementing 
17the Self-Determination Program as a term of its contract under 
18Section 4629. As part of implementing the program, the regional 
19center shall do all of the following:

20(1) Contract with local or family-run consumer organizations 
21to conduct outreach and training through local meetings or forums 
22to provide regional center consumers and their families with
23information about the Self-Determination Program and to help 
24ensure that the program is available to a diverse group of 
25participants, with special outreach to underserved communities.

26(2) Advance funds to a financial management services provider 
27to facilitate participation in the Self-Determination Program, as 
28determined necessary by a participant’s IPP team.

29(s) The financial management services provider shall provide 
30the participant, or his or her authorized representative, and the 
31regional center service coordinator with a monthly individual 
32budget statement that describes the amount of funds allocated by 
33budget category, the amount spent in the previous 30-day period, 
34and the amount of funding that remains available under the 
35participant’s individual budget.

36(t) Only the financial management services provider is required 
37to apply for vendorization in accordance with Subchapter 2 
38(commencing with Section 54300) of Chapter 3 of Title 17 of the 
39California Code of Regulations, for the Self-Determination 
40Program. All other service providers shall have applicable state 
P10   1licenses, certifications, or other state required documentation, but 
2are exempt from the vendorization requirements set forth in Title 
317 of the California Code of Regulations. The financial 
4management services provider shall ensure and document that all 
5service providers meet specified requirements for any service that 
6may be delivered to the participant.

7(u) A participant may request, at no charge to the participant or 
8the regional center, criminal history background checks for persons 
9seeking employment as a provider of services and supports and 
10providing direct care services and supports to the participant.

11(1) Criminal history record checks pursuant to this subdivision 
12shall be performed and administered as described in subdivision 
13(b) and subdivisions (d) to (h), inclusive, of Section 4689.2, and 
14Sections 4689.4 to 4689.6, inclusive, and shall apply to 
15vendorization of providers and hiring of employees to provide 
16services and supports for family home agencies and family homes.

17(2) The department may enter into a written agreement with the 
18Department of Justice to implement this subdivision.

19(v) Each regional center shall establish a local advisory 
20committee to provide oversight of the Self-Determination Program. 
21The regional center, area board, and the Office of Clients’ Rights 
22Advocacy of Disability Rights California shall each appoint 
23one-third of the membership of the committee, which shall consist 
24of consumers, family members, clients’ rights advocates and other 
25advocates, and community leaders. A majority of the committee 
26shall be consumers and their family members. The committee shall 
27reflect the multicultural diversity and geographic profile of the 
28catchment area. The committee shall review the development and 
29ongoing progress of the Self-Determination Program, including 
30whether the program is operating consistent with the requirements 
31of this section, and may make ongoing recommendations for 
32improvement to the regional center and the department.

33(w) Commencing January 10, 2016, the department shall 
34annually provide the following information to the appropriate 
35policy and fiscal committees of the Legislature:

36(1) Number and characteristics of participants, by regional 
37center.

38(2) Types and ranking of services and supports purchased under 
39the Self-Determination Program, by regional center.

P11   1(3) Range and average of individual budgets, by regional center, 
2including adjustments to the budget to address unanticipated need.

3(4) Information regarding participant satisfaction under the 
4Self-Determination Program and, when data is available, the 
5traditional service delivery system, by regional center.

6(5) The proportion of participants who report that their choices 
7and decisions are respected and supported.

8(6) The proportion of participants who report that they are able 
9to recruit and hire qualified service providers.

10(7) The number and outcome of individual budget appeals, by 
11regional center.

12(8) The number and outcome of fair hearing appeals, by regional 
13center.

14(9) The number of participants who voluntarily withdraw from 
15the Self-Determination Program and a summary of the reasons 
16why, by regional center.

17(10) The number of participants who are subsequently 
18determined to no longer be eligible for the Self-Determination 
19Program and a summary of the reasons why, by regional center.

20(11) Identification of barriers to participation and 
21recommendations for program improvements.

22(12) A comparison of average annual expenditures for 
23individuals with similar characteristics not participating in the 
24Self-Determination Program. 

25(x) The State Council on Developmental Disabilities, in 
26collaboration with the protection and advocacy agency identified 
27in Section 4900 and the federally funded University Centers for 
28Excellence in Developmental Disabilities Education, Research, 
29and Service, shall issue a report to the Legislature no later than
30three years following the approval of the federal funding on the 
31status of the Self-Determination Program authorized by this section, 
32and provide recommendations to enhance the effectiveness of the 
33program. 

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Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

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[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

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Fact: Vaccines Do Not Cause Autism.

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