Public Act 100-0694
 
HB5636 EnrolledLRB100 20699 RLC 36160 b

    AN ACT concerning health.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 5. The Protection and Advocacy for Persons with
Developmental Disabilities Act is amended by changing Section 1
as follows:
 
    (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, and 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;
        (2) which community provider agencies or
    State-operated developmental centers were visited in the
    year preceding the report; and
        (3) the nature of each visit, such as meeting with
    residents and staff of the developmental disability
    facility, distributing written information to the
    developmental disability facility, or whether the visit
    was scheduled or unscheduled.
    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 impairment
    or combination of mental and physical impairments;
        (B) is manifested before the person attains age 22;
        (C) is likely to continue indefinitely;
        (D) results in substantial functional limitations in 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
        (E) reflects the person's need for combination and
    sequence of special, interdisciplinary or generic care,
    treatment or other services which are of lifelong or
    extended duration and are individually planned and
    coordinated.
(Source: P.A. 99-180, eff. 7-29-15.)
 
    Section 99. Effective date. This Act takes effect January
1, 2019.

Effective Date: 1/1/2019