AB1220 - Developmental services: denials of services and notices of actions.

Amended IN Senate June 18, 2025 Amended IN Senate June 10, 2025 Amended IN Assembly March 24, 2025 CALIFORNIA LEGISLATURE— 2025–2026 REGULAR SESSION Assembly Bill No. 1220 Introduced by Assembly Member Arambula February 21, 2025 An act to amend Sections 4519.5 and 4646 of the Welfare and Institutions Code, relating to developmental services. LEGISLATIVE COUNSEL'S DIGEST AB 1220, as amended, Arambula. Developmental services: denials of services and notices of actions. Existing law, the Lanterman Developmental Disabilities Services Act, requires the State Department of Developmental Services to contract with regional centers to provide services and supports to individuals with developmental disabilities and their families. Under existing law, the services and supports to be provided to a regional center consumer are contained in an individual program plan, developed in accordance with prescribed requirements. Existing law requires the department and regional centers to annually collaborate to compile specified data relating to purchase of service authorization, utilization, and expenditure by each regional center, as specified, and to post that information on its internet website. This bill would require a regional center to document in each consumer’s individual program plan all of the consumer’s denials of services, notices of actions, and appeals. The bill would also require the department and regional centers to include in their annual report data relating to disagreements and denials of services, and would make related findings and declarations. Digest Key Vote: MAJORITY Appropriation: NO Fiscal Committee: YES Local Program: NO Bill Text The people of the State of California do enact as follows: SECTION 1. This act shall be known, and may be cited, as the Access to Disability Services Transparency Act. SEC. 2. The Legislature finds and declares all of the following: (a) Transparency and accountability in the regional center system are essential to ensuring equitable access to services for individuals with developmental disabilities. (b) Existing law requires regional centers to provide adequate notice if the regional center determines that an applicant is not eligible for services or that a recipient is no longer eligible for services, or if the regional center makes a decision to reduce, terminate, or change services set forth in an individual program plan. (c) While regional centers currently report appeals data to the State Department of Developmental Services, there is no public reporting mechanism in place for tracking service disagreements and denials and notices of action (NOAs). (d) Disparities exist in service access, particularly among Latino and non-English-speaking families, due to a lack of information and accessibility. (e) Establishing a statewide reporting mechanism will improve oversight, address disparities, and enhance public trust in the developmental services system. (f) While regional centers have made tremendous strides in providing fair and equitable access for consumers, service disparities persist, particularly among Latino, Black, Asian, Indigenous, and non-English-speaking communities, as well as low-income families. (g) Current public reporting requirements focus only on service approvals and appeals, but do not capture the data on service disagreements and denials, leaving gaps in oversight and accountability that contribute to systemic inequities. (h) Public reporting of service disagreements and denials and appeals will allow lawmakers, advocates, and families to monitor disparities and hold regional centers accountable for fair and consistent decisionmaking. (i) Mandating the inclusion of service disagreements and denials in individualized program plans will create a permanent, trackable record of service requests and decisions ensuring transparency and fairness in service allocation. (j) A standardized and accessible data dashboard, available in multiple languages and user-friendly formats, will ensure families, advocacy organizations, and policymakers have the necessary tools to track and address systemic inequities. (k) Ensuring the department collects and publishes data on service disagreements and denials, NOAs, and appeals will provide a critical foundation for evaluating equity, effectiveness, and accountability within the regional center system. (l) The implementation of this act will provide a structured and enforceable mechanism for the department to ensure compliance across all 21 regional centers and improve the overall integrity of the service system. SEC. 3. Section 4519.5 of the Welfare and Institutions Code is amended to read: 4519.5. (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, expenditure, and disagreement and denials of services, related to each consumer’s individual program plan 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. (9) Beginning with data for the fiscal year of 2026–27, the number of disagreements or denials of services. The data reported shall include the identified type of services disagreed upon, upon or denied, or requests for notices of action made during the individual program plan meeting. (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 internet 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 internet 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. (d) By March 31, 2013, the department shall post the information described in this section on a statewide basis on its internet website. Commencing December 31, 2013, the department shall annually post this information by December 31. The department shall maintain all previous years’ data on its internet website. The department shall also post notice of any regional center stakeholder meetings on 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, 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 internet 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, 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, 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 internet 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-ba [Text truncated for display. Full text available on Congress.gov.]