(405 ILCS 40/1) (from Ch. 91 1/2, par. 1151)
Sec. 1.
The Governor may designate a private not-for-profit corporation as
the agency to administer a State plan to protect and advocate the rights of
persons with developmental disabilities pursuant to the requirements of the
federal Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C.
6001 to 6081, as now or hereafter amended. The designated
agency may pursue legal, administrative, and other appropriate remedies to
ensure the protection of the rights of such persons who are receiving
treatment, services or habilitation within this State. The agency
designated by the Governor shall be independent of any agency which
provides treatment, services, guardianship, or habilitation to persons with
developmental disabilities, and such agency shall not be administered by
the Governor's Planning Council on Developmental Disabilities or any
successor State Planning Council organized pursuant to federal law.
The designated agency may receive and expend funds to protect and advocate
the rights of persons with developmental disabilities. In order to properly
exercise its powers and duties, such agency shall have access to developmental
disability facilities and mental health facilities, as defined under Sections
1-107 and 1-114 of the Mental Health and Developmental Disabilities Code,
facilities as defined in Section 1-113 of the Nursing Home Care Act, Section 1-113 of the ID/DD Community Care Act, or Section 1-113 of the MC/DD Act, and community-integrated living arrangements as defined in Section 3 of the Community-Integrated Living Arrangements Licensure and Certification Act. Such
access shall be granted for the purposes of meeting with residents and staff,
informing them of services available from the agency, distributing written
information about the agency and the rights of persons with developmental
disabilities, conducting scheduled and unscheduled visits, and performing other
activities designed to protect the rights of persons with developmental
disabilities. The agency also shall have access, for the purpose of inspection
and copying, to the records of a person with developmental disabilities who
resides in any such facility subject to the limitations of this Act, the Mental
Health and Developmental Disabilities Confidentiality Act, the Nursing Home
Care Act, the ID/DD Community Care Act, and the MC/DD Act. The agency also shall have access, for the purpose of inspection and
copying, to the records of a person with developmental disabilities who resides
in any such facility if (1) a complaint is received by the agency from or on
behalf of the person with a developmental disability, and (2) such person does
not have a legal guardian or the State or the designee of the State is the
legal guardian of such person. The designated agency shall provide written
notice to the person with developmental disabilities and the State guardian of
the nature of the complaint based upon which the designated agency has gained
access to the records. No record or the contents of any record shall be
redisclosed by the designated agency unless the person with developmental
disabilities and the State guardian are provided 7 days advance written notice,
except in emergency situations, of the designated agency's intent to redisclose
such record, during which time the person with developmental disabilities or
the State guardian may seek to judicially enjoin the designated agency's
redisclosure of such record on the grounds that such redisclosure is contrary
to the interests of the person with developmental disabilities. Any person who
in good faith complains to the designated agency on behalf of a person with
developmental disabilities, or provides information or participates in the
investigation of any such complaint shall have immunity from any liability,
civil, criminal or otherwise, and shall not be subject to any penalties,
sanctions, restrictions or retaliation as a consequence of making such
complaint, providing such information or participating in such investigation.
Upon request, the designated agency shall be entitled to inspect and copy
any records or other materials which may further the agency's investigation
of problems affecting numbers of persons with developmental disabilities. When
required by law any personally identifiable information of persons with
developmental disabilities shall be removed from the records.
However, the designated agency may not inspect or copy any records or other
materials when the removal of personally identifiable information imposes
an unreasonable burden on mental health and developmental disabilities
facilities pursuant to the Mental Health and Developmental Disabilities
Code or facilities as defined in the Nursing Home Care Act, the ID/DD Community Care Act, or the MC/DD Act.
The Governor shall not redesignate the agency to administer the State
plan to protect and advocate the rights of persons with developmental
disabilities unless there is good cause for the redesignation and unless
notice of the intent to make such redesignation is given to persons with
developmental disabilities or their representatives, the federal Secretary
of Health and Human Services, and the General Assembly at least 60 days
prior thereto.
The designated agency shall submit to the Department of Human Services an annual report to be made available to
the public. The annual report shall include, but is not limited to: (1) how many visits were made by the designated |
| agency to developmental disability facilities in the year preceding the report;
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(2) which community provider agencies or
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| State-operated developmental centers were visited in the year preceding the report; and
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(3) the nature of each visit, such as meeting with
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| residents and staff of the developmental disability facility, distributing written information to the developmental disability facility, or whether the visit was scheduled or unscheduled.
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As used in this Act, the term "developmental disability" means a severe,
chronic disability of a person which:
(A) is attributable to a mental or physical
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| impairment or combination of mental and physical impairments;
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(B) is manifested before the person attains age 22;
(C) is likely to continue indefinitely;
(D) results in substantial functional limitations in
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| 3 or more of the following areas of major life activity: (i) self-care, (ii) receptive and expressive language, (iii) learning, (iv) mobility, (v) self-direction, (vi) capacity for independent living, and (vii) economic self-sufficiency; and
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(E) reflects the person's need for combination and
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| sequence of special, interdisciplinary or generic care, treatment or other services which are of lifelong or extended duration and are individually planned and coordinated.
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(Source: P.A. 99-180, eff. 7-29-15; 100-694, eff. 1-1-19.)
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