4519.5. (Amended by Stats. 2023, Ch. 44, Sec. 15.)

(a) The department and the regional centers shall annually collaborate to compile and report, consistent with applicable federal and state privacy laws, data, including deidentified data in accordance with subdivision (m), in a uniform manner relating to purchase of service authorization, utilization, and expenditure by each regional center with respect to all of the following:

(1) The age of the consumer, categorized by the following:

(A) Birth to two years of age, inclusive.

(B) Three to 21 years of age, inclusive.

(C) Twenty-two years of age and older.

(2) Race or ethnicity of the consumer.

(3) Preferred language spoken by the consumer, and other related details, as feasible.

(4) Disability detail, in accordance with the categories established by subdivision (a) of Section 4512, and, if applicable, a category specifying that the disability is unknown.

(5) Residence type, subcategorized by age, race or ethnicity, and preferred language.

(6) Number of instances when the written copy of the individual program plan was provided at the request of the consumer and, when appropriate, the consumer’s parents, legal guardian or conservator, or authorized representative, in a language other than a threshold language, as defined by paragraph (3) of subdivision (a) of Section 1810.410 of Title 9 of the California Code of Regulations, if that written copy was provided more than 60 days after the request.

(7) Number of instances when the written copy of the individual program plan was provided at the request of the consumer and, when appropriate, the consumer’s parents, legal guardian or conservator, or authorized representative, in a threshold language, as defined by paragraph (3) of subdivision (a) of Section 1810.410 of Title 9 of the California Code of Regulations, if that written copy was provided more than 45 days after the request, in violation of paragraph (5) of subdivision (a) of Section 4646.5.

(8) Beginning with data for the fiscal year of 2023–24, the numbers, percentages, and total and per capita expenditure and authorization amounts, by age, as applicable, according to race or ethnicity and preferred language, for all combined residence types and for consumers living in the family home, regarding the following service types:

(A) Camping and associated travel expenses.

(B) Social recreation activities.

(C) Educational services.

(D) Nonmedical therapies, including, but not limited to, specialized recreation, art, dance, and music.

(b) The data reported pursuant to subdivision (a) shall also include the number and percentage of individuals, categorized by age, race or ethnicity, and disability, and by residence type, as set forth in paragraph (5) of subdivision (a), who have been determined to be eligible for regional center services, but are not receiving purchase of service funds.

(c) (1) (A) By March 31, 2013, each regional center shall post the data described in this section that are specific to the regional center on its website. Commencing on December 31, 2013, each regional center shall annually post these data by December 31. Each regional center shall maintain all previous years’ data on its website.

(B) Commencing December 31, 2023, each regional center shall post its data uniformly with all other regional centers, using the same criteria, format, and organization.

(2) Notwithstanding the requirement pursuant to paragraph (1), if the information required to be posted pursuant to this section is produced and posted by the department for each regional center, each regional center instead may link to that information from its internet website.

(e) In addition to maintaining hyperlinks to each regional center’s reports on its internet website, commencing December 1, 2024, the department shall also post the data compiled pursuant to subdivisions (a) and (b), and the data compiled pursuant to Section 4519.6, in the same uniform manner as reported by the regional centers, as follows:

(1) On a statewide aggregate basis.

(2) On an aggregate basis according to particular geographical areas, as determined by the department in consultation with stakeholders.

(3) The department shall provide trend analysis on the changes observed in data over time, including increasing and decreasing utilization of services by any of the characteristics cited in subdivision (a).

(f) After December 1, 2024, the department and regional centers shall post information required to be posted pursuant to this section in machine-readable format.

(g) Within three months of compiling the data with the department, and annually thereafter, each regional center shall meet with stakeholders in one or more public meetings regarding the data. The meeting or meetings shall be held separately from any meetings held pursuant to Section 4660. The regional center shall provide participants of these meetings with the data and any associated information related to improvements in the provision of developmental services to underserved communities and shall conduct a discussion of the data and the associated information in a manner that is culturally and linguistically appropriate for that community, including providing alternative communication services, as required by Sections 11135 to 11139.7, inclusive, of the Government Code and implementing regulations. Regional centers shall inform the department of the scheduling of those public meetings 30 days prior to the meeting. Notice of the meetings shall also be posted on the regional center’s website 30 days prior to the meeting and shall be sent to individual stakeholders and groups representing underserved communities in a timely manner. Each regional center shall, in holding the meetings required by this subdivision, consider the language needs of the community and shall schedule the meetings at times and locations designed to result in a high turnout by the public and underserved communities.

(h) (1) Consistent with subdivision (h) of Section 4648, regional centers shall annually provide each individual with their purchase of services data and any associated information related to improvements in the provision of developmental services to them. If requested, regional centers shall conduct a discussion of the data and the associated information in a manner that is culturally and linguistically appropriate for that individual, including providing alternative communication services, as required by Sections 11135 to 11139.7, inclusive, of the Government Code and implementing regulations.

(2) When implemented in the statewide case management system, the information described in paragraph (1) shall be available to individuals through the consumer portal. If requested, regional centers shall conduct a discussion of the data and the associated information in a manner that is culturally and linguistically appropriate for that individual, including providing alternative communication services, as required by Sections 11135 to 11139.7, inclusive, of the Government Code and implementing regulations.

(i) (1) Each regional center shall annually report to the department regarding its implementation of the requirements of this section. The report shall include, but shall not be limited to, all of the following:

(A) Actions the regional center took to improve public attendance and participation at stakeholder meetings, including, but not limited to, attendance and participation by underserved communities.

(B) Copies of minutes from the meeting and attendee comments.

(C) Whether the data described in this section, including data deidentified pursuant to subdivision (m) of this section, indicate a need to reduce disparities in the purchase of services among consumers in the regional center’s catchment area. If the data do indicate that need, the regional center’s recommendations and plan to promote equity, and reduce disparities, in the purchase of services.

(2) Each regional center and the department shall annually post the reports required by paragraph (1) on its website by August 31.

(j) (1) The department shall, on a twice-a-year basis, consult with stakeholders, including consumers and families that reflect the ethnic and language diversity of regional center consumers, regional centers, advocates, providers, family resource centers, the protection and advocacy agency described in Section 4901, and those entities designated as University Centers for Excellence in Developmental Disabilities Education, Research, and Service pursuant to Section 15061 of Title 42 of the United States Code, to achieve the following objectives:

(A) Review the data compiled pursuant to subdivisions (a) and (b).

(B) Identify barriers to equitable access to services and supports among consumers, including consumers whose purchase of services data have been deidentified pursuant to subdivision (m), and develop recommendations to help reduce disparities in purchase of service expenditures.

(C) Identify gaps in, and encourage the development and expansion of, culturally appropriate services, service delivery, and service coordination.

(D) Identify best practices to reduce disparity and promote equity.

(E) Maximize transparency whenever possible, including aggregation by region or display as percentages, as necessary.

(2) The department shall notify the Legislature when information is posted on its internet website pursuant to this section.

(k) (1) Subject to available funding, the department shall allocate funding to regional centers or community-based organizations with department oversight to assist with implementation of the recommendations and plans developed pursuant to subdivisions (i) and (j). Activities funded through these allocations may include, but are not limited to, pay differentials supporting direct care bilingual staff of community-based service providers, parent or caregiver education programs, cultural competency training for regional center staff, outreach to underserved populations, or additional culturally appropriate service types or service delivery models.

(2) Each regional center shall consult with stakeholders regarding activities that may be effective in addressing disparities in the receipt of regional center services and the regional center’s proposed requests for the funding specified in paragraph (1). Each regional center shall identify the stakeholders it consulted with, including groups whose purchase of services data have been deidentified, and include information on how it incorporated the input of stakeholders into its requests.

(3) A community-based organization may submit a request for grant funding pursuant to this subdivision. In order to protect confidential data, the department or a regional center may waive a grant application requirement to provide data supporting that application, if that data would be subject to deidentification pursuant to applicable federal or state privacy laws. The organization shall submit the request concurrently to the regional center of the jurisdiction in which the organization is located and to the department. The regional center shall provide the department with input regarding the request prior to the department’s final determination on the request.

(4) The department shall review requests for funding within 45 days from the deadline specified in the department’s guidance to regional centers and community-based organizations.

(5) Each regional center and community-based organization receiving funding shall report annually to the department, in a manner determined by the department, on how the funding allocations were used and shall include recommendations of priorities for activities that may be effective in addressing disparities, based on the consultation with stakeholders.

(6) The department shall post the following information on its website:

(A) By September 1 of any year in which grant funding is available and has not been allocated, a structure for the grant program, including all of the following information:

(i) How community-based organizations reflecting groups that are disadvantaged by disparities in the purchase of services will be invited to participate in the grant program, including groups whose purchase of services data have been deidentified.

(ii) How statewide strategies were considered.

(iii) How the department will ensure grant funds are not used for activities that regional centers are otherwise required by statute or regulation to conduct.

(iv) How funded activities will be evaluated.

(v) How community-based organizations reflecting groups that are impacted by disparities can receive a waiver for the submission of data supporting that application, if that data would be subject to deidentification pursuant to applicable federal or state privacy laws.

(B) By October 1 of any year in which grant funding is available and has not been allocated, the final invitation for requests for funding or another mechanism through which requests for funding are solicited.

(C) By January 1 of any year in which grant funding has been allocated, a list of grant recipients, funding level per grant, and a description of the funded project.

(D) By May 1 of any year in which the information is available, evaluation results from prior grants. To ensure the department complies with this subparagraph, regional centers and community-based organizations receiving funding shall provide the department, by March 1 of the same year, with an evaluation of funded activities and the effectiveness of those activities in reducing disparities in the purchase of services, to the extent information is available. The provision of data by community-based organizations reflecting groups that are impacted by disparities whose purchase of services data otherwise would have to be deidentified pursuant to applicable federal or state privacy laws may be waived for the purpose of reporting grant outcomes pursuant to this subdivision.

( l ) On or before December 31, 2021, the department shall contract with an entity or entities with demonstrated experience in quantitative and qualitative data evaluation to design and conduct an independent evaluation of the efforts to promote equity and reduce disparities pursuant to subdivision (k).

(m) (1) The data compiled pursuant to subdivisions (a) and (b) shall be deidentified in accordance with Section 164.514 of Title 45 of the Code of Federal Regulations or with updated regulations regarding the deidentification of data in accordance with the federal Health Insurance Portability and Accountability Act of 1996 (Public Law 104-191) prior to that data being disclosed publicly to third parties, including, but not limited to, stakeholders, or posted on internet websites.

(2) The department shall deidentify purchase of services data pertaining to any regional center in a manner that maximizes transparency.