42 U.S.C. § 15025 — State Councils on Developmental Disabilities and designated State agencies

(a) In general. Every State getting funding under this part must set up and keep a Council. The Council does advocacy, capacity building, and systemic change work, consistent with the purposes in section 15001(b) and (c), to build a coordinated, family-centered system of community services for people with developmental disabilities. The Council has authority to carry out the duties listed in subsection (c). (b) Council membership. (1) Council appointments. (A) The Governor appoints Council members from state residents. (B) The Governor picks members after asking for recommendations from groups representing a wide range of people with developmental disabilities and others interested in them, including the Council's non-state-agency members; the Council may help coordinate public input to the Governor about these recommendations. (C) Council membership must reflect the State's geography and its racial and ethnic diversity. (2) Membership rotation. The Governor must set up a system to rotate members, but members can keep serving until their replacements are named. The Council must tell the Governor about membership rules and about vacancies left unfilled too long. (3) Representation of individuals with developmental disabilities. At least 60% of each Council must be: (A) people with developmental disabilities, parents or guardians of children with developmental disabilities, or close relatives or guardians of adults with developmental disabilities who cannot advocate for themselves; and (B) not employees, or managing employees, of any state agency or other entity that gets funds or provides services under this part. (4) Representation of agencies and organizations. (A) Each Council must include representatives of relevant state agencies — those handling federal disability-related funds (under the Rehabilitation Act, Individuals with Disabilities Education Act, Older Americans Act, and Social Security Act titles V and XIX), university Centers in the State, and the State's protection and advocacy system — plus representatives of local, nongovernmental, and private nonprofit groups that serve people with developmental disabilities in the State. (B) These representatives must have enough authority to plan and carry out policy for their agency, and must step out of any discussion of grants or contracts their own agency is applying for, following the conflict-of-interest rule in section 15024(c)(5)(D). (5) Composition of membership with developmental disabilities. Of the members counted under paragraph (3): one-third must be people with developmental disabilities themselves; one-third must be parents, guardians, or close relatives of people with developmental disabilities; and one-third must be a mix of both groups. (6) Institutionalized individuals. (A) At least one of these members must be, or be a close relative or guardian of, someone with a developmental disability who lives or lived in an institution. (B) This rule doesn't apply if no such person lives in the State. (c) Council responsibilities. (1) In general. The Council carries out the duties in paragraphs (2) through (10), using its members, staff, consultants, contractors, or subgrantees. (2) Advocacy, capacity building, and systemic change activities. The Council must advocate for people with developmental disabilities and run programs that carry out the law's purpose. (3) Examination of goals. At the end of each grant year, the Council must: (A) check how much of each goal it met; (B) find what got in the way of unmet goals; (C) decide if the 5-year State plan needs changes; (D) separately track progress on the self-advocacy goal from section 15024(c)(4)(A)(ii); and (E) check how satisfied people were with the Council's activities. (4) State plan development. The Council writes the State plan and sends it to the Secretary, after consulting the designated State agency only to get state assurances and check consistency with state law. (5) State plan implementation. The Council carries out the plan through activities like: (B) Outreach — finding people with developmental disabilities and families who might otherwise be missed, and helping them access services; (C) Training — teaching people with developmental disabilities, families, and staff how to get or provide services; (D) Technical assistance — helping public and private groups further the law's purpose; (E) Supporting and educating communities — helping neighborhoods respond well to people with developmental disabilities, through local networks, education, and access to resources; (F) Interagency collaboration and coordination — promoting teamwork among agencies serving these individuals; (G) Coordination with related councils, committees, and programs — working with similar bodies like state interagency coordinating councils, rehabilitation councils, parent training centers, and other disability-advocacy groups; (H) Barrier elimination, systems design and redesign — removing obstacles to community services and improving how systems work; (I) Coalition development and citizen participation — educating the public and building coalitions, including self-advocacy and policymaker education training; (J) Informing policymakers — giving federal, state, and local officials information, studies, and model policies; (K) Demonstration of new approaches — testing new service methods for a limited time as part of a bigger systemic-change strategy, funded either through this part or other sources; and (L) Other activities — any other advocacy or systemic-change work that furthers the law's purpose. (6) Review of designated State agency. The Council must periodically review the designated State agency's work and recommend changes to the Governor. (7) Reports. Starting in fiscal year 2002, the Council must send the Secretary an annual report, in the Secretary's required format, covering: (A) how much of each goal was achieved; (B) what strategies helped; (C) what got in the way of unmet goals; (D) separate tracking of the self-advocacy goal; (E) an update on the comprehensive needs review and consumer satisfaction information; (F) the adequacy of care for people in Intermediate Care Facilities and for people served through home and community-based waivers; (G) how the year's funds were spent; (H) resources used directly by the Council and resources used in partnership with others; and (I) how the Council will share the report with the public in accessible formats. (8) Budget. Each Council must prepare, approve, and run a budget covering: (A) holding hearings and forums, and — as set by Council policy — reimbursing members for expenses (including child care and personal assistance), paying stipends to unpaid or wage-losing members, funding travel to training, and handling subcontracts; (B) hiring and keeping the staff (professional, consulting, technical, clerical) the Council needs — states cannot apply hiring freezes, layoffs, travel bans, or similar policies to Council staff if doing so would hurt federally funded staff or functions; and (C) directing spending on grants, contracts, and other activities approved in the State plan. (9) Staff hiring and supervision. Consistent with State law, the Council hires and evaluates its Director when the position opens, and the Director hires and evaluates the rest of the staff. Hiring and firing must follow federal and state nondiscrimination and personnel laws. (10) Staff assignments. Council staff work only for the Council and cannot be given other duties by the designated State agency or any other state agency. (11) Construction. Nothing here lets a Council control or direct policy or administration of programs under the Rehabilitation Act of 1973 or the Individuals with Disabilities Education Act. (d) Designated State agency. (1) In general. Each State getting funding must name a state agency to support the Council. Any naming done after April 6, 1994 must follow this subsection's rules. (2) Designation. (A) The designated agency must be: the Council itself (if state law allows), a state agency that doesn't provide or pay for services to people with developmental disabilities, or a state office (including the Governor's office or a state planning office). (B) If a service-providing agency was already the designated agency before April 6, 1994, and the Governor (or legislature) decided by June 30, 1994 not to change it, that agency can keep the role — but only after the Governor considered public and Council comments and independently found the arrangement won't interfere with the Council's budget, staff, priorities, or independence. (C) The Council can ask the Governor (or legislature) to review and change the designated agency, giving reasons and a preferred replacement. (D) After that review, a majority of the Council's non-state-agency members can appeal to the Secretary if the designated agency's actions or inactions are undermining the Council's independence. (3) Responsibilities. The designated agency must: (B) give required assurances and support services the Council asks for; (C) receive, track, and pay out funds under the State plan, with proper fiscal controls; (D) keep records and give the Council timely financial reports on spending and the federal/non-federal funding split; (E) provide the required non-federal matching share; (F) help the Council get State plan assurances and check state-law consistency; and (G) sign a memorandum of understanding with the Council, if asked, spelling out each side's role. (4) Use of funds for designated State agency responsibilities. (A) The Secretary only pays a State for the designated agency's costs under section 15024(c)(5)(B)(vi) if the State spends at least as much of its own money on those duties as it did the year before — unless the Council itself is the designated agency, in which case this rule doesn't apply. (B) With the designated agency's agreement, the Council may use or contract with other agencies to do the designated agency's work instead.