Title 42The Public Health and WelfareRelease 119-73

§15044 Administration

Title 42 › Chapter CHAPTER 144— - DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF RIGHTS › Subchapter SUBCHAPTER I— - PROGRAMS FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES › Part Part C— - Protection and Advocacy of Individual Rights › § 15044

Last updated Apr 6, 2026|Official source

Summary

Pick the system’s governing board using the system’s own rules, but the board must meet specific limits. Most members must know or represent the people served. More than half of the board must be either people with disabilities who get or have gotten services, or their parents, family members, guardians, advocates, or authorized representatives. The board can include a representative from the State Council on Developmental Disabilities, the State Centers, and the named self-advocacy group. No more than one-third of members may be appointed by the State’s chief executive if that official has appointment power. The system must set term limits so membership rotates, fill any vacancy within 60 days, and if the State has no multi-member public board it must create an advisory council that advises on priorities and also has a majority of members who are people with developmental disabilities or their family/advocates. The system may sue a State or its agencies for individuals with developmental disabilities, but any money won by judgment may only be used to carry out the system’s purpose and not for extra payments to legal contractors or personal bonuses. The system must use funds consistent with section 14404 of this title. For audits or reports, the Secretary cannot force the program to reveal anyone’s identity or other personal information when someone asks for help. The Secretary must give public notice and ask for comments before any federal onsite review, include those comments in a written report, and send the report to the Governor and others. Beginning in fiscal year 2002, each system must send the Secretary an annual report on its activities, results, spending, goals, barriers, and how it got and used public input.

Full Legal Text

Title 42, §15044

The Public Health and Welfare — Source: USLM XML via OLRC

(a)In a State in which the system described in section 15043 of this title is organized as a private nonprofit entity with a multimember governing board, or a public system with a multimember governing board, such governing board shall be selected according to the policies and procedures of the system, except that—
(1)(A)the governing board shall be composed of members who broadly represent or are knowledgeable about the needs of the individuals served by the system;
(B)a majority of the members of the board shall be—
(i)individuals with disabilities, including individuals with developmental disabilities, who are eligible for services, or have received or are receiving services through the system; or
(ii)parents, family members, guardians, advocates, or authorized representatives of individuals referred to in clause (i); and
(C)the board may include a representative of the State Council on Developmental Disabilities, the Centers in the State, and the self-advocacy organization described in section 15024(c)(4)(A)(ii)(I) of this title;
(2)not more than ⅓ of the members of the governing board may be appointed by the chief executive officer of the State involved, in the case of any State in which such officer has the authority to appoint members of the board;
(3)the membership of the governing board shall be subject to term limits set by the system to ensure rotating membership;
(4)any vacancy in the board shall be filled not later than 60 days after the date on which the vacancy occurs; and
(5)in a State in which the system is organized as a public system without a multimember governing or advisory board, the system shall establish an advisory council—
(A)that shall advise the system on policies and priorities to be carried out in protecting and advocating the rights of individuals with developmental disabilities; and
(B)on which a majority of the members shall be—
(i)individuals with developmental disabilities who are eligible for services, or have received or are receiving services, through the system; or
(ii)parents, family members, guardians, advocates, or authorized representatives of individuals referred to in clause (i).
(b)(1)Nothing in this subchapter shall preclude a system from bringing a suit on behalf of individuals with developmental disabilities against a State, or an agency or instrumentality of a State.
(2)An amount received pursuant to a suit described in paragraph (1) through a court judgment may only be used by the system to further the purpose of this part and shall not be used to augment payments to legal contractors or to award personal bonuses.
(3)The system shall use assistance provided under this part in a manner consistent with section 14404 of this title.
(c)For purposes of any periodic audit, report, or evaluation required under this part, the Secretary shall not require an entity carrying out a program to disclose the identity of, or any other personally identifiable information related to, any individual requesting assistance under such program.
(d)The Secretary shall provide advance public notice of any Federal programmatic or administrative onsite review of a system conducted under this part and solicit public comment on the system through such notice. The Secretary shall prepare an onsite visit report containing the results of such review, which shall be distributed to the Governor of the State and to other interested public and private parties. The comments received in response to the public comment solicitation notice shall be included in the onsite visit report.
(e)Beginning in fiscal year 2002, each system established in a State pursuant to this part shall annually prepare and transmit to the Secretary a report that describes the activities, accomplishments, and expenditures of the system during the preceding fiscal year, including a description of the system’s goals, the extent to which the goals were achieved, barriers to their achievement, the process used to obtain public input, the nature of such input, and how such input was used.

Reference

Citations & Metadata

Citation

42 U.S.C. § 15044

Title 42The Public Health and Welfare

Last Updated

Apr 6, 2026

Release point: 119-73