H1363B3796A07581 MAB:CMD 10/06/20 #90 A07581
AMENDMENTS TO HOUSE BILL NO. 1363
Sponsor: SENATOR BROOKS
Printer's No. 3796
Amend Bill, page 1, lines 2 and 3, by striking out
"conferring powers and duties on the Department of Human
Services" and inserting
providing for waiting lists for intellectual disability or
autism services and report
Amend Bill, page 1, lines 6 through 16; pages 2 through 13,
lines 1 through 30; page 14, lines 1 through 20; by striking out
all of said lines on said pages and inserting
Section 1. Short title.
This act shall be known and may be cited as the Individuals
with Intellectual Disabilities or Autism Bill of Rights Act.
Section 2. Findings.
The General Assembly finds and declares as follows:
(1) Disability is a natural part of the human
experience, which does not diminish the right of individuals
with intellectual disabilities or autism to:
(i) enjoy the opportunity to live independently, to
the maximum extent possible;
(ii) make choices and decisions;
(iii) contribute to society and participate in the
community; and
(iv) experience full integration and inclusion in
the economic, political, social, cultural, educational
and all other aspects of society in this Commonwealth.
(2) Individuals with intellectual disabilities or autism
continually encounter various forms of discrimination in all
areas.
(3) There is a lack of public awareness of the
capabilities and competencies of individuals with
intellectual disabilities or autism.
(4) A substantial number of individuals with
intellectual disabilities or autism do not have access to
appropriate supports and services from generic and
specialized service systems and remain unserved or
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underserved.
(5) Communities can be enriched by the full and active
participation and the contributions by individuals with
intellectual disabilities or autism and their families or
legal guardians.
(6) The long-time commitment of the General Assembly to
secure for individuals with intellectual disabilities or
autism in partnership with their families or legal guardians
the opportunity to choose where they live is affirmed.
(7) For true choice to exist, individuals with
intellectual disabilities or autism and their families or
legal guardians must be provided with information about
options for supports and services.
(8) The goals of the General Assembly properly include
the goal of providing individuals with intellectual
disabilities or autism with the opportunities and support to:
(i) make informed choices and decisions;
(ii) pursue meaningful and productive lives;
(iii) live in a home of their choice; and
(iv) achieve full integration and inclusion in
society in an individualized manner consistent with the
unique strengths, resources, priorities, concerns,
abilities and capabilities of each individual.
(9) It is the policy of the General Assembly that all
programs, projects and activities operating in this
Commonwealth be carried out in a manner consistent with the
following principles:
(i) Individuals with intellectual disabilities or
autism are capable of pursuing independence, productivity
and integration and inclusion into the community and
often require the provision of services, supports and
other assistance to achieve independence, productivity
and integration and inclusion.
(ii) Individuals with intellectual disabilities or
autism have competencies, capabilities and personal goals
which shall be recognized, supported and encouraged, and
any assistance to the individuals shall be provided in an
individualized manner consistent with the unique
strengths, resources, priorities, concerns, abilities and
capabilities of the individuals.
(iii) Individuals with intellectual disabilities or
autism and their families or legal guardians are
instrumental decision makers regarding the services and
supports the individuals receive and inform policies and
programs which affect the lives of the individuals and
their families.
(iv) The Commonwealth shall, within budgetary
accountability and Federal funding availability, provide
services, supports and other assistance which reflect the
principles of everyday life and self-determination that
have been the cornerstone of this Commonwealth's human
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services for people with intellectual disabilities or
autism.
Section 3. Definitions.
The following words and phrases when used in this act shall
have the meanings given to them in this section unless the
context clearly indicates otherwise:
"Autism" or "autism spectrum disorder." Any of the pervasive
developmental disorders defined by the Diagnostic and
Statistical Manual of Mental Disorders, 5th Edition (DSM-5),
including autistic disorder, Asperger's syndrome and pervasive
developmental disorder not otherwise specified.
"Department." The Department of Human Services of the
Commonwealth.
"Home." The community or facility in which individuals with
intellectual disabilities or autism reside.
"Intellectual disability." As defined in section 102 of the
act of October 20, 1966 (3rd Sp.Sess., P.L.96, No.6), known as
the Mental Health and Intellectual Disability Act of 1966.
"Intermediate care facility." A facility for individuals
with intellectual disabilities as defined in section 1396d(d) of
the Social Security Act (49 Stat. 620, 42 U.S.C. § 1396d(d)).
"PUNS." The prioritization of urgency of need for services
tool.
"Supports and services." Integrated services in the home,
including the integrated settings where the services are
provided, as defined in 42 CFR 440.180 (relating to home and
community-based waiver services) and 441.301(c)(4) and (5)
(relating to contents of request for a waiver), which are
developed in accordance with the person-centered planning
requirements of 42 CFR 441.301(c)(1), (2) and (3).
"Waiting list." A list maintained by the department with the
individuals with intellectual disabilities or autism who are
waiting for supports and services to meet their needs.
Section 4. Individualized supports and services.
(a) Community-based services.--The Commonwealth shall, based
on available funding, provide individualized supports and
services for an individual with intellectual disabilities or
autism if all of the following apply:
(1) The individual has intellectual disabilities or
autism.
(2) The individual chooses certain supports and services
or does not oppose the supports and services.
(3) The supports and services are included in an
approved individualized services plan developed in accordance
with the person-centered planning requirements under 42 CFR
441.301(c)(1), (2) and (3) (relating to contents of request
for a waiver) by an authorized State or county supports
coordinator with the input of the individual and the
individual's guardian and advocate.
(b) Family.--
(1) If the individual so chooses, family members of an
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individual with intellectual disabilities or autism shall be
involved in meetings regarding the planning for and
arrangement of supports and services or other allowable
services. Legal guardians shall, in accordance with 20
Pa.C.S. § 5521(a) (relating to provisions concerning powers,
duties and liabilities), have all of the following duties:
(i) Asserting the rights and interests of the
individual.
(ii) Respecting the wishes and preferences of the
individual to the greatest extent possible.
(iii) Encouraging the individual to participate to
the maximum extent of the individual's abilities in all
decisions that affect the individual, to act on the
individual's own behalf when the individual is able to do
so and to develop or regain the individual's capacity to
manage the individual's personal affairs to the maximum
extent feasible.
(2) Nothing in this act shall be construed to prohibit a
legal guardian from exercising the legal guardian's duties
and liabilities on behalf of the individual.
(c) Contact.--Nothing in this act shall be construed to
prohibit an individual with intellectual disabilities or autism
from maintaining contact with family and friends. The individual
shall also have the choice to not have contact with family and
friends.
(d) Complaints.--An individual with intellectual
disabilities or autism or a family member or legal guardian of
the individual who believes that the needs as identified or as
detailed in the individualized service plan are not being met
may provide the State or county a letter expressing concerns.
The State or county shall, within 30 days, address the concerns
and, if necessary, take corrective action. All Federal and State
due process rights, including written notice and a fair hearing,
also continue to apply for each individual.
Section 5. Waiting lists for intellectual disability or autism
services and report.
(a) Waiting list.--The department shall, within six months
of the effective date of this section, reorganize its waiting
list or interest list for individuals with intellectual
disabilities or autism into a waiting list that utilizes PUNS.
This data shall not limit assessment data collection based on
the geographic area where intellectual disabilities or autism
services are provided in this Commonwealth. The department shall
make this data available to the Legislative Budget and Finance
Committee for the purpose of the report required under
subsection (b).
(b) Report.--Within one year of the effective date of this
section, the Legislative Budget and Finance Committee shall
submit a report on the department's waiting list or interest
list specified under subsection (a) to the Governor, the General
Assembly and the county intellectual disability program
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administrators.
(c) Contents of report.--The report required under
subsection (b) shall include all of the following information:
(1) Statistical information on the current and projected
annual increase in the waiting lists on a county basis. The
department shall develop a Statewide standardized form to
collect the information from the counties and the
department's Bureau of Autism Services.
(2) Budget projections taking into consideration the
department's current budget year, projected annual costs
associated with the elimination of the waiting lists,
financial information on the amount of additional Federal,
State or other funds in each county and with the department's
Bureau of Autism Services which may be required annually for
the operational costs associated with the elimination of the
waiting list in each county and of the waiting list with the
department's Bureau of Autism Services and the projected
annual waiting lists in each annual report.
(3) The total number of individuals with intellectual
disabilities or autism on the department's waiting list for
supports and services on the effective date of this section,
organized as follows:
(i) By age range, as follows:
(A) Under 18 years of age.
(B) 18 to 21 years of age.
(C) Over 21 years of age.
(ii) By emergency need, critical need or planning
for need, as organized in PUNS.
(iii) By their home, including any of the following
settings for supports and services:
(A) A State center.
(B) A private intermediate care facility for
individuals with intellectual disabilities or persons
with other related conditions.
(C) A State hospital.
(D) A private psychiatric hospital.
(E) A residential treatment facility.
(F) Any other public or private facility or
other institutional setting.
(4) The number of individuals removed from the
department's waiting list in the last year.
(5) The total estimated cost and per-individual cost to
serve eligible individuals with intellectual disabilities or
autism on the waiting list.
(d) Public hearings and comment.--In the development of the
report required under subsection (b), the Legislative Budget and
Finance Committee shall conduct public hearings and obtain
public comment from individuals with disabilities, including
those with intellectual disabilities or autism, their families
and legal guardians and providers of services to the disability
community, including the intellectual disabilities and autism
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community.
(e) Annual submission of updated report.--The Legislative
Budget and Finance Committee shall update the budget,
statistical and financial data in the report required under
subsection (b) annually and submit an updated report to all of
the following:
(1) The Governor.
(2) The chair and minority chair of the Appropriations
Committee of the Senate.
(3) The chair and minority chair of the Appropriations
Committee of the House of Representatives.
(4) The chair and minority chair of the Health and Human
Services Committee of the Senate.
(5) The chair and minority chair of the Health Committee
of the House of Representatives.
(6) The chair and minority chair of the Human Services
Committee of the House of Representatives.
(7) The Medical Assistance Advisory Committee within the
department.
(f) Posting of report.--The department shall post the report
required under subsection (b) on the department's publicly
accessible Internet website in an accessible format.
Section 6. Funding.
Services under this act shall be made available across this
Commonwealth, taking into account the budget constraints and
financial resources available to the Commonwealth and the needs
of individuals with intellectual disabilities or autism. Nothing
under this act shall constitute an entitlement derived from the
Commonwealth or a claim on any funds of the Commonwealth.
Section 7. Choice of care options.
The department shall review the report required under section
5(b) annually and work to identify individuals with intellectual
disabilities or autism on the waiting list or interested in
receiving supports and services through a public intermediate
care facility. The department shall collaborate with county
intellectual disability program administrators to contact
individuals with intellectual disabilities or autism on the
waiting list or their legal guardians to provide the option of
receiving care at a public intermediate care facility or
remaining on the waiting list for home and community-based
waiver enrollment. The department shall disclose to individuals
with intellectual disabilities or autism or their legal
guardians any plans that may result in the change or elimination
of their services.
Section 8. Effective date.
This act shall take effect immediately.
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See A07581 in
the context
of HB1363