P.L. 106–402, Approved October 30, 2000 (114 Stat. 1677 )

SEC. 143 [42 U.S.C. 15043] SYSTEM REQUIRED

(a)  System Required.—In order for a State to receive an allotment under subtitle B or this subtitle—

(1)  the State shall have in effect a system to protect and advocate the rights of individuals with developmental disabilities;

(2)  such system shall—

(A)  have the authority to—

(i)  pursue legal, administrative, and other appropriate remedies or approaches to ensure the protection of, and advocacy for, the rights of such individuals within the State who are or who may be eligible for treatment, services, or habilitation, or who are being considered for a change in living arrangements, with particular attention to members of ethnic and racial minority groups; and

(ii)  provide information on and referral to programs and services addressing the needs of individuals with developmental disabilities;

(B)  have the authority to investigate incidents of abuse and neglect of individuals with developmental disabilities if the incidents are reported to the system or if there is probable cause to believe that the incidents occurred;

(F)  not be administered by the State Council on Developmental Disabilities;

(G)  be independent of any agency that provides treatment, services, or habilitation to individuals with developmental disabilities;

(H)  have access at reasonable times to any individual with a developmental disability in a location in which services, supports, and other assistance are provided to such an individual, in order to carry out the purpose of this subtitle;

(I)  have access to all records of—

(i)  any individual with a developmental disability who is a client of the system if such individual, or the legal guardian, conservator, or other legal representative of such individual, has authorized the system to have such access;

(ii)  any individual with a developmental disability, in a situation in which—

(I)  the individual, by reason of such individual’s mental or physical condition, is unable to authorize the system to have such access;

(II)  the individual does not have a legal guardian, conservator, or other legal representative, or the legal guardian of the individual is the State; and

(III)  a complaint has been received by the system about the individual with regard to the status or treatment of the individual or, as a result of monitoring or other activities, there is probable cause to believe that such individual has been subject to abuse or neglect; and

(iii)  any individual with a developmental disability, in a situation in which—

(I)  the individual has a legal guardian, conservator, or other legal representative;

(II)  a complaint has been received by the system about the individual with regard to the status or treatment of the individual or, as a result of monitoring or other activities, there is probable cause to believe that such individual has been subject to abuse or neglect;

(III)  such representative has been contacted by such system, upon receipt of the name and address of such representative;

(IV)  such system has offered assistance to such representative to resolve the situation; and

(V)  such representative has failed or refused to act on behalf of the individual;

(J) (i)  have access to the records of individuals described in subparagraphs (B) and (I), and other records that are relevant to conducting an investigation, under the circumstances described in those subparagraphs, not later than 3 business days after the system makes a written request for the records involved; and

(ii)  have immediate access, not later than 24 hours after the system makes such a request, to the records without consent from another party, in a situation in which services, supports, and other assistance are provided to an individual with a developmental disability—

(I)  if the system determines there is probable cause to believe that the health or safety of the individual is in serious and immediate jeopardy; or

(II)  in any case of death of an individual with a developmental disability;

(3)  to the extent that information is available, the State shall provide to the system—

(A)  a copy of each independent review, pursuant to section 1902(a)(30)(C)^[397] of the Social Security Act (42 U.S.C. 1396a(a)(30)(C)), of an Intermediate Care Facility (Mental Retardation) within the State, not later than 30 days after the availability of such a review; and

(B)  information about the adequacy of health care and other services, supports, and assistance that individuals with developmental disabilities who are served through home and community-based waivers (authorized under section 1915(c) of the Social Security Act (42 U.S.C. 1396n(c))) receive;

(b)  American Indian Consortium.—Upon application to the Secretary, an American Indian consortium established to provide protection and advocacy services under this subtitle, shall receive funding pursuant to section 142(a)(6) to provide the services. Such consortium shall be considered to be a system for purposes of this subtitle and shall coordinate the services with other systems serving the same geographic area. The tribal council that designates the consortium shall carry out the responsibilities and exercise the authorities specified for a State in this subtitle, with regard to the consortium.

(c)  Record.—In this section, the term ‘‘record’’ includes—

(1)  a report prepared or received by any staff at any location at which services, supports, or other assistance is provided to individuals with developmental disabilities;

(2)  a report prepared by an agency or staff person charged with investigating reports of incidents of abuse or neglect, injury, or death occurring at such location, that describes such incidents and the steps taken to investigate such incidents; and

(3)  a discharge planning record.