Title 42 — The Public Health and WelfareRelease 119-73
§15025 State Councils on Developmental Disabilities and designated State agencies
Title 42 › Chapter CHAPTER 144— - DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF RIGHTS › Subchapter SUBCHAPTER I— - PROGRAMS FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES › Part Part B— - Federal Assistance to State Councils on Developmental Disabilities › § 15025
Summary
States that get money under this program must set up and keep a Council to speak up for people with developmental disabilities, build community supports, and push for system-wide improvements so services are consumer- and family-centered. The Governor picks Council members from state residents, after asking for recommendations if the Governor wants to. The Council must be spread across the State and reflect racial and ethnic diversity. The Governor must rotate members, and members may stay until successors are named. At least 60% of the Council must be people with developmental disabilities, parents or guardians of children with developmental disabilities, or immediate relatives/guardians of adults with developmental disabilities who cannot advocate for themselves. Those people cannot be employees or managing employees of state agencies or other entities that get funds or provide services under this program. Of that 60%, one-third must be people with developmental disabilities, one-third parents/guardians or immediate relatives, and one-third a mix of those groups. At least one member must be (or be a relative of) someone who lives or used to live in an institution, unless no such person lives in the State. The Council must also include officials from relevant State programs, Centers in the State, the State protection and advocacy system, and local nonprofit or nongovernmental groups; those officials must have authority to work on policy and must avoid conflicts of interest in grant or contract discussions. The Council must act as an advocate and run or support projects that carry out its plan. Each year it must check how well its goals were met, why goals were missed, what changes the 5-year State plan needs, report separately on self-advocacy, and measure customer satisfaction. The Council creates the State plan and sends it to the Secretary after consulting the designated State agency about State assurances and legal consistency. To carry out the plan, the Council may do outreach, training, technical help, neighborhood and community supports, interagency coordination, work with other disability councils and parent centers, remove access barriers, educate the public and policymakers, run short-term demonstrations, and other actions to build a coordinated community system. The Council reviews the designated State agency’s work and can recommend changes to the Governor. Starting in fiscal year 2002, the Council must send an annual report to the Secretary with details on goal progress, strategies, barriers, self-advocacy, consumer satisfaction, the adequacy of health care in institutions and in home- and community-based waivers, how funds were spent, resources created by Council actions, and how the report will be shared in accessible formats. The Council must make and follow a budget, may reimburse or pay stipends to members, hire staff and a Director, and the staff must work only for the Council. The Council may not control programs under the Rehabilitation Act or the Individuals with Disabilities Education Act. Each State must name a designated State agency to support the Council; that agency can be the Council itself (if allowed), an agency that does not provide or pay for developmental disability services, or a State office such as the Governor’s office. Agencies that were designated on April 6, 1994 may stay designated if the Governor (or legislature) decides so by June 30, 1994 after considering public comment and non‑State Council members’ views and finding no interference with Council independence. The Council can ask for a review of the designation and a majority of non‑State agency Council members can appeal to the Secretary. The designated State agency must give assurances and support, handle and account for funds, provide records and financial reports, provide the required non‑Federal match, help with plan assurances, and enter an MOU with the Council if asked. The Secretary will provide certain funds only if the State spends at least as much from State sources on those agency responsibilities as it did the previous year, unless the Council itself is the designated agency. With the designated agency’s agreement, the Council may use other agencies to carry out designated agency tasks.
Full Legal Text
Title 42, §15025
The Public Health and Welfare — Source: USLM XML via OLRC
(a)Each State that receives assistance under this part shall establish and maintain a Council to undertake advocacy, capacity building, and systemic change activities (consistent with subsections (b) and (c) of section 15001 of this title) that contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system of community services, individualized supports, and other forms of assistance that contribute to the achievement of the purpose of this part. The Council shall have the authority to fulfill the responsibilities described in subsection (c).
(b)(1)(A)The members of the Council of a State shall be appointed by the Governor of the State from among the residents of that State.
(B)The Governor shall select members of the Council, at the discretion of the Governor, after soliciting recommendations from organizations representing a broad range of individuals with developmental disabilities and individuals interested in individuals with developmental disabilities, including the non-State agency members of the Council. The Council may, at the initiative of the Council, or on the request of the Governor, coordinate Council and public input to the Governor regarding all recommendations.
(C)The membership of the Council shall be geographically representative of the State and reflect the diversity of the State with respect to race and ethnicity.
(2)The Governor shall make appropriate provisions to rotate the membership of the Council. Such provisions shall allow members to continue to serve on the Council until such members’ successors are appointed. The Council shall notify the Governor regarding membership requirements of the Council, and shall notify the Governor when vacancies on the Council remain unfilled for a significant period of time.
(3)Not less than 60 percent of the membership of each Council shall consist of individuals who are—
(A)(i)individuals with developmental disabilities;
(ii)parents or guardians of children with developmental disabilities; or
(iii)immediate relatives or guardians of adults with mentally impairing developmental disabilities who cannot advocate for themselves; and
(B)not employees of a State agency that receives funds or provides services under this part, and who are not managing employees (as defined in section 1126(b) of the Social Security Act (42 U.S.C. 1320a–5(b)) of any other entity that receives funds or provides services under this part.
(4)(A)Each Council shall include—
(i)representatives of relevant State entities, including—
(I)State entities that administer funds provided under Federal laws related to individuals with disabilities, including the Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.), the Individuals with Disabilities Education Act (20 U.S.C. 1400 et seq.), the Older Americans Act of 1965 (42 U.S.C. 3001 et seq.), and titles V and XIX of the Social Security Act (42 U.S.C. 701 et seq. and 1396 et seq.);
(II)Centers in the State; and
(III)the State protection and advocacy system; and
(ii)representatives, at all times, of local and nongovernmental agencies, and private nonprofit groups concerned with services for individuals with developmental disabilities in the State in which such agencies and groups are located.
(B)The representatives described in subparagraph (A) shall—
(i)have sufficient authority to engage in policy planning and implementation on behalf of the department, agency, or program such representatives represent; and
(ii)recuse themselves from any discussion of grants or contracts for which such representatives’ departments, agencies, or programs are grantees, contractors, or applicants and comply with the conflict of interest assurance requirement under section 15024(c)(5)(D) of this title.
(5)Of the members of the Council described in paragraph (3)—
(A)⅓ shall be individuals with developmental disabilities described in paragraph (3)(A)(i);
(B)⅓ shall be parents or guardians of children with developmental disabilities described in paragraph (3)(A)(ii), or immediate relatives or guardians of adults with developmental disabilities described in paragraph (3)(A)(iii); and
(C)⅓ shall be a combination of individuals described in paragraph (3)(A).
(6)(A)Of the members of the Council described in paragraph (5), at least 1 shall be an immediate relative or guardian of an individual with a developmental disability who resides or previously resided in an institution or shall be an individual with a developmental disability who resides or previously resided in an institution.
(B)Subparagraph (A) shall not apply with respect to a State if such an individual does not reside in that State.
(c)(1)A Council, through Council members, staff, consultants, contractors, or subgrantees, shall have the responsibilities described in paragraphs (2) through (10).
(2)The Council shall serve as an advocate for individuals with developmental disabilities and conduct or support programs, projects, and activities that carry out the purpose of this part.
(3)At the end of each grant year, each Council shall—
(A)determine the extent to which each goal of the Council was achieved for that year;
(B)determine to the extent that each goal was not achieved, the factors that impeded the achievement;
(C)determine needs that require amendment of the 5-year strategic State plan required under section 15024 of this title;
(D)separately determine the information on the self-advocacy goal described in section 15024(c)(4)(A)(ii) of this title; and
(E)determine customer satisfaction with Council supported or conducted activities.
(4)The Council shall develop the State plan and submit the State plan to the Secretary after consultation with the designated State agency under the State plan. Such consultation shall be solely for the purposes of obtaining State assurances and ensuring consistency of the plan with State law.
(5)(A)The Council shall implement the State plan by conducting and supporting advocacy, capacity building, and systemic change activities such as those described in subparagraphs (B) through (L).
(B)The Council may support and conduct outreach activities to identify individuals with developmental disabilities and their families who otherwise might not come to the attention of the Council and assist and enable the individuals and families to obtain services, individualized supports, and other forms of assistance, including access to special adaptation of generic community services or specialized services.
(C)The Council may support and conduct training for persons who are individuals with developmental disabilities, their families, and personnel (including professionals, paraprofessionals, students, volunteers, and other community members) to enable such persons to obtain access to, or to provide, community services, individualized supports, and other forms of assistance, including special adaptation of generic community services or specialized services for individuals with developmental disabilities and their families. To the extent that the Council supports or conducts training activities under this subparagraph, such activities shall contribute to the achievement of the purpose of this part.
(D)The Council may support and conduct technical assistance activities to assist public and private entities to contribute to the achievement of the purpose of this part.
(E)The Council may support and conduct activities to assist neighborhoods and communities to respond positively to individuals with developmental disabilities and their families—
(i)by encouraging local networks to provide informal and formal supports;
(ii)through education; and
(iii)by enabling neighborhoods and communities to offer such individuals and their families access to and use of services, resources, and opportunities.
(F)The Council may support and conduct activities to promote interagency collaboration and coordination to better serve, support, assist, or advocate for individuals with developmental disabilities and their families.
(G)The Council may support and conduct activities to enhance coordination of services with—
(i)other councils, entities, or committees, authorized by Federal or State law, concerning individuals with disabilities (such as the State interagency coordinating council established under part C of the Individuals with Disabilities Education Act (20 U.S.C. 1431 et seq.), the State Rehabilitation Council and the Statewide Independent Living Council established under the Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.), the State mental health planning council established under subtitle B 11 See References in Text note below. of title XIX of the Public Health Service Act [42 U.S.C. 300x et seq.], and the activities authorized under section 3003 or 3004 of title 29, and entities carrying out other similar councils, entities, or committees);
(ii)parent training and information centers under part D of the Individuals with Disabilities Education Act (20 U.S.C. 1451 et seq.) and other entities carrying out federally funded projects that assist parents of children with disabilities; and
(iii)other groups interested in advocacy, capacity building, and systemic change activities to benefit individuals with disabilities.
(H)The Council may support and conduct activities to eliminate barriers to access and use of community services by individuals with developmental disabilities, enhance systems design and redesign, and enhance citizen participation to address issues identified in the State plan.
(I)The Council may support and conduct activities to educate the public about the capabilities, preferences, and needs of individuals with developmental disabilities and their families and to develop and support coalitions that support the policy agenda of the Council, including training in self-advocacy, education of policymakers, and citizen leadership skills.
(J)The Council may support and conduct activities to provide information to policymakers by supporting and conducting studies and analyses, gathering information, and developing and disseminating model policies and procedures, information, approaches, strategies, findings, conclusions, and recommendations. The Council may provide the information directly to Federal, State, and local policymakers, including Congress, the Federal executive branch, the Governors, State legislatures, and State agencies, in order to increase the ability of such policymakers to offer opportunities and to enhance or adapt generic services to meet the needs of, or provide specialized services to, individuals with developmental disabilities and their families.
(K)(i)The Council may support and conduct, on a time-limited basis, activities to demonstrate new approaches to serving individuals with developmental disabilities that are a part of an overall strategy for systemic change. The strategy may involve the education of policymakers and the public about how to deliver effectively, to individuals with developmental disabilities and their families, services, supports, and assistance that contribute to the achievement of the purpose of this part.
(ii)The Council may carry out this subparagraph by supporting and conducting demonstration activities through sources of funding other than funding provided under this part, and by assisting entities conducting demonstration activities to develop strategies for securing funding from other sources.
(L)The Council may support and conduct other advocacy, capacity building, and systemic change activities to promote the development of a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system of community services, individualized supports, and other forms of assistance that contribute to the achievement of the purpose of this part.
(6)The Council shall periodically review the designated State agency and activities carried out under this part by the designated State agency and make any recommendations for change to the Governor.
(7)Beginning in fiscal year 2002, the Council shall annually prepare and transmit to the Secretary a report. Each report shall be in a form prescribed by the Secretary by regulation under section 15004(b) of this title. Each report shall contain information about the progress made by the Council in achieving the goals of the Council (as specified in section 15024(c)(4) of this title), including—
(A)a description of the extent to which the goals were achieved;
(B)a description of the strategies that contributed to achieving the goals;
(C)to the extent to which the goals were not achieved, a description of factors that impeded the achievement;
(D)separate information on the self-advocacy goal described in section 15024(c)(4)(A)(ii) of this title;
(E)(i)as appropriate, an update on the results of the comprehensive review and analysis described in section 15024(c)(3) of this title; and
(ii)information on consumer satisfaction with Council supported or conducted activities;
(F)(i)a description of the adequacy of health care and other services, supports, and assistance that individuals with developmental disabilities in Intermediate Care Facilities (Mental Retardation) receive; and
(ii)a description of the adequacy of health care and other services, supports, and assistance that individuals with developmental disabilities served through home and community-based waivers (authorized under section 1915(c) of the Social Security Act (42 U.S.C. 1396n(c)) receive;
(G)an accounting of the manner in which funds paid to the State under this part for a fiscal year were expended;
(H)a description of—
(i)resources made available to carry out activities to assist individuals with developmental disabilities that are directly attributable to Council actions; and
(ii)resources made available for such activities that are undertaken by the Council in collaboration with other entities; and
(I)a description of the method by which the Council will widely disseminate the annual report to affected constituencies and the general public and will assure that the report is available in accessible formats.
(8)Each Council shall prepare, approve, and implement a budget using amounts paid to the State under this part to fund and implement all programs, projects, and activities carried out under this part, including—
(A)(i)conducting such hearings and forums as the Council may determine to be necessary to carry out the duties of the Council; and
(ii)as determined in Council policy—
(I)reimbursing members of the Council for reasonable and necessary expenses (including expenses for child care and personal assistance services) for attending Council meetings and performing Council duties;
(II)paying a stipend to a member of the Council, if such member is not employed or must forfeit wages from other employment, to attend Council meetings and perform other Council duties;
(III)supporting Council member and staff travel to authorized training and technical assistance activities including in-service training and leadership development activities; and
(IV)carrying out appropriate subcontracting activities;
(B)hiring and maintaining such numbers and types of staff (qualified by training and experience) and obtaining the services of such professional, consulting, technical, and clerical staff (qualified by training and experience), consistent with State law, as the Council determines to be necessary to carry out the functions of the Council under this part, except that such State shall not apply hiring freezes, reductions in force, prohibitions on travel, or other policies to the staff of the Council, to the extent that such policies would impact the staff or functions funded with Federal funds, or would prevent the Council from carrying out the functions of the Council under this part; and
(C)directing the expenditure of funds for grants, contracts, interagency agreements that are binding contracts, and other activities authorized by the State plan approved under section 15024 of this title.
(9)The Council shall, consistent with State law, recruit and hire a Director of the Council, should the position of Director become vacant, and supervise and annually evaluate the Director. The Director shall hire, supervise, and annually evaluate the staff of the Council. Council recruitment, hiring, and dismissal of staff shall be conducted in a manner consistent with Federal and State nondiscrimination laws. Dismissal of personnel shall be conducted in a manner consistent with State law and personnel policies.
(10)The staff of the Council, while working for the Council, shall be responsible solely for assisting the Council in carrying out the duties of the Council under this part and shall not be assigned duties by the designated State agency or any other agency or entity of the State.
(11)Nothing in this subchapter shall be construed to authorize a Council to direct, control, or exercise any policymaking authority or administrative authority over any program assisted under the Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.) or the Individuals with Disabilities Education Act (20 U.S.C. 1400 et seq.).
(d)(1)Each State that receives assistance under this part shall designate a State agency that shall, on behalf of the State, provide support to the Council. After April 6, 1994, any designation of a State agency under this paragraph shall be made in accordance with the requirements of this subsection.
(2)(A)Except as provided in this subsection, the designated State agency shall be—
(i)the Council if such Council may be the designated State agency under the laws of the State;
(ii)a State agency that does not provide or pay for services for individuals with developmental disabilities; or
(iii)a State office, including the immediate office of the Governor of the State or a State planning office.
(B)(i)If a State agency that provides or pays for services for individuals with developmental disabilities was a designated State agency for purposes of part B of the Developmental Disabilities Assistance and Bill of Rights Act on April 6, 1994, and the Governor of the State (or the legislature, where appropriate and in accordance with State law) determines prior to June 30, 1994, not to change the designation of such agency, such agency may continue to be a designated State agency for purposes of this part.
(ii)The determination, at the discretion of the Governor (or the legislature, as the case may be), shall be made after—
(I)the Governor has considered the comments and recommendations of the general public and a majority of the non-State agency members of the Council with respect to the designation of such State agency; and
(II)the Governor (or the legislature, as the case may be) has made an independent assessment that the designation of such agency will not interfere with the budget, personnel, priorities, or other action of the Council, and the ability of the Council to serve as an independent advocate for individuals with developmental disabilities.
(C)The Council may request a review of and change in the designation of the designated State agency by the Governor (or the legislature, as the case may be). The Council shall provide documentation concerning the reason the Council desires a change to be made and make a recommendation to the Governor (or the legislature, as the case may be) regarding a preferred designated State agency.
(D)After the review is completed under subparagraph (C), a majority of the non-State agency members of the Council may appeal to the Secretary for a review of and change in the designation of the designated State agency if the ability of the Council to serve as an independent advocate is not assured because of the actions or inactions of the designated State agency.
(3)(A)The designated State agency shall, on behalf of the State, have the responsibilities described in subparagraphs (B) through (G).
(B)The designated State agency shall provide required assurances and support services as requested by and negotiated with the Council.
(C)The designated State agency shall—
(i)receive, account for, and disburse funds under this part based on the State plan required in section 15024 of this title; and
(ii)provide for such fiscal control and fund accounting procedures as may be necessary to assure the proper disbursement of, and accounting for, funds paid to the State under this part.
(D)The designated State agency shall keep and provide access to such records as the Secretary and the Council may determine to be necessary. The designated State agency, if other than the Council, shall provide timely financial reports at the request of the Council regarding the status of expenditures, obligations, and liquidation by the agency or the Council, and the use of the Federal and non-Federal shares described in section 15026 of this title, by the agency or the Council.
(E)The designated State agency, if other than the Council, shall provide the required non-Federal share described in section 15026(c) of this title.
(F)The designated State agency shall assist the Council in obtaining the appropriate State plan assurances and in ensuring that the plan is consistent with State law.
(G)On the request of the Council, the designated State agency shall enter into a memorandum of understanding with the Council delineating the roles and responsibilities of the designated State agency.
(4)(A)(i)The Secretary shall provide amounts to a State under section 15024(c)(5)(B)(vi) of this title for a fiscal year only if the State expends an amount from State sources for carrying out the responsibilities of the designated State agency under paragraph (3) for the fiscal year that is not less than the total amount the State expended from such sources for carrying out similar responsibilities for the previous fiscal year.
(ii)Clause (i) shall not apply in a year in which the Council is the designated State agency.
(B)With the agreement of the designated State agency, the Council may use or contract with agencies other than the designated State agency to perform the functions of the designated State agency.
Legislative History
Notes & Related Subsidiaries
Editorial Notes
References in Text
The Rehabilitation Act of 1973, referred to in subsecs. (b)(4)(A)(i)(I) and (c)(5)(G)(i), (11), is Pub. L. 93–112, Sept. 26, 1973, 87 Stat. 355, which is classified generally to chapter 16 (§ 701 et seq.) of Title 29, Labor. For complete classification of this Act to the Code, see
Short Title
note set out under section 701 of Title 29 and Tables. The Individuals with Disabilities Education Act, referred to in subsecs. (b)(4)(A)(i)(I) and (c)(5)(G)(i), (ii), (11), is title VI of Pub. L. 91–230, Apr. 13, 1970, 84 Stat. 175, which is classified generally to chapter 33 (§ 1400 et seq.) of Title 20, Education. Part C of the Act is classified generally to subchapter III (§ 1431 et seq.) of chapter 33 of Title 20. Part D of the Act is classified generally to subchapter IV (§ 1450 et seq.) of chapter 33 of Title 20. For complete classification of this Act to the Code, see section 1400 of Title 20 and Tables. The Older Americans Act of 1965, referred to in subsec. (b)(4)(A)(i)(I), is Pub. L. 89–73, July 14, 1965, 79 Stat. 218, which is classified generally to chapter 35 (§ 3001 et seq.) of this title. For complete classification of this Act to the Code, see
Short Title
note set out under section 3001 of this title and Tables. The Social Security Act, referred to in subsec. (b)(4)(A)(i)(I), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Titles V and XIX of the Act are classified generally to subchapters V (§ 701 et seq.) and XIX (§ 1396 et seq.), respectively, of chapter 7 of this title. For complete classification of this Act to the Code, see section 1305 of this title and Tables. The Public Health Service Act, referred to in subsec. (c)(5)(G)(i), is act July 1, 1944, ch. 373, 58 Stat. 682. The reference to subtitle B of title XIX of the Act probably means part B of title XIX of the Act which is classified generally to part B (§ 300x et seq.) of subchapter XVII of chapter 6A of this title. For complete classification of this Act to the Code, see
Short Title
note set out under section 201 of this title and Tables. The Developmental Disabilities Assistance and Bill of Rights Act, referred to in subsec. (d)(2)(B)(i), is title I of Pub. L. 88–164, as added by Pub. L. 98–527, § 2, Oct. 19, 1984, 98 Stat. 2662, which was repealed by Pub. L. 106–402, title IV, § 401(a), Oct. 30, 2000, 114 Stat. 1737. Part B of the Act was classified generally to subchapter II (§ 6021 et seq.) of chapter 75 of this title. For complete classification of this Act to the Code, see Tables.
Amendments
2004—Subsec. (c)(5)(G)(i). Pub. L. 108–446 substituted “part C” for “subtitle C”. Pub. L. 108–364 substituted “section 3003 or 3004 of title 29” for “section 3011 or 3012 of title 29”.
Reference
Citations & Metadata
Citation
42 U.S.C. § 15025
Title 42 — The Public Health and Welfare
Last Updated
Apr 6, 2026
Release point: 119-73