PRINTER'S NO. 420
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE BILL
No.
414
Session of
2017
INTRODUCED BY MURT, D. MILLER, BARRAR, BOBACK, R. BROWN,
V. BROWN, BULLOCK, CALTAGIRONE, D. COSTA, DEAN, DONATUCCI,
DRISCOLL, FREEMAN, GOODMAN, KINSEY, NEILSON, PASHINSKI,
ROZZI, SCHLOSSBERG, SOLOMON, STURLA AND WARD,
FEBRUARY 8, 2017
REFERRED TO COMMITTEE ON HUMAN SERVICES, FEBRUARY 8, 2017
AN ACT
Establishing a bill of rights for individuals with intellectual
disabilities or autism; and conferring powers and duties on
the Department of Human Services.
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
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, to the maximum
extent possible, independently and in the community;
(ii) make choices and decisions;
(iii) contribute to society and participate in the
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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 community-integrated supports and services from
generic and specialized service systems and remain unserved
or 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; and
there is a need to ensure that, within this Commonwealth,
there is the availability and equitable provision of
necessary community-integrated supports and services for
individuals with intellectual disabilities or autism,
regardless of religion, race, color, national origin,
economic or social status and degree or type of disability.
(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 in the community is
affirmed. The General Assembly encourages individuals with
intellectual disabilities or autism to remain in their homes
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or community to the maximum extent possible.
(7) Services must ensure accountability, credibility,
responsiveness and quality assurance, whether the funding is
Federal, State, local or community.
(8) As of April 30, 2015, there are approximately 10,234
people with intellectual disabilities or autism with
emergency and critical needs waiting for home-based and
community-based services. As of June 3, 2015, there are
approximately 1,675 individuals on the autism home-based and
community-based services waiting list, or interest list. The
waiting lists for these persons are expected to grow
substantially into the foreseeable future.
(9) The Department of Human Services needs to develop an
adequate plan to address the needs and services for the
individuals on the waiting list for intellectual disability
services, for the individuals on the waiting list or interest
list for autism services, and for all individuals with
disabilities to prevent institutionalization.
(10) For true choice to exist, individuals with
intellectual disabilities or autism and their families or
legal guardians must be provided with information about
individuals' options for supports and services.
(11) 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 and community of their choice.
(iv) Achieve full integration and inclusion in
society in an individualized manner consistent with the
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unique strengths, resources, priorities, concerns,
abilities and capabilities of the individual.
(12) The purpose of this act is to reflect the United
States Supreme Court decision of Olmstead v. L.C., 119 S.Ct.
2176 (1999) (No.98-536 U.S. 1999) and the integration
mandates of the Americans with Disabilities Act and the
Rehabilitation Act.
(13) 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 such 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, if chosen by the individual, their families
or legal guardians are instrumental decision makers
regarding the services and supports such individuals
receive and inform policies and programs which affect the
lives of such individuals and their families.
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(iv) The Commonwealth shall, within budgetary
accountability, provide services, supports and other
assistance which reflect the principles of everyday life
and self-determination that have been the cornerstone of
the Commonwealth's human 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 most recent edition of
the Diagnostic and Statistical Manual of Mental Disorders (DSM),
or its successor, including autistic disorder, Asperger's
syndrome and pervasive developmental disorder not otherwise
specified.
"Community-integrated supports and services options," "home
and community-based services" or "supports and services."
Integrated services in the home and community, including the
integrated settings where such services are provided, as defined
by Federal regulations at 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).
"Department." The Department of Human Services of the
Commonwealth.
"Intellectual disability." Significantly subaverage general
intellectual functioning that is accompanied by significant
limitations in adaptive functioning in at least two of the
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following skill areas:
(1) Communication.
(2) Self-care.
(3) Home living.
(4) Social and interpersonal skills.
(5) Use of community resources.
(6) Self-direction.
(7) Functional academic skills.
(8) Work.
(9) Health.
(10) Safety.
The onset must occur before the individual reaches 22 years of
age, as defined by 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.
Section 4. Choice.
(a) Community-based services.--The Commonwealth shall, based
on available funding, provide individualized community-
integrated 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 of 42 CFR §
441.301(c)(1), (2) and (3) (relating to contents of request
for a waiver) by an authorized State or county supports
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coordinator with the input of the individual and, if chosen
by the individual, the individual's guardian and advocate.
(b) Family.--If the individual so chooses, family members
and legal guardians of an individual with intellectual
disabilities or autism shall be involved in meetings regarding
the planning for and arrangement of community-based services or
other allowable services. Legal guardians shall, under 20
Pa.C.S. § 5521(a) (relating to provisions concerning powers,
duties and liabilities):
(1) Assert the rights and interests of the individual.
(2) Respect the wishes and preferences of the individual
to the greatest extent possible.
(3) Encourage the individual to participate to the
maximum extent of his or her abilities in all decisions that
affect him or her, to act on his or her behalf when he or she
is able to do so and to develop or regain his or her capacity
to manage his or her personal affairs to the maximum extent
feasible.
(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 not to have contact with family and
friends.
(d) Complaints.--An individual with intellectual
disabilities or autism, or a family member or a legal guardian
of such 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
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due process rights, including, but not limited to, written
notice and a fair hearing, also continue to apply for each
individual.
Section 5. Waiting lists for intellectual disability or autism
services.
(a) General rule.--The department shall, within four months
of the effective date of this act, reorganize its waiting list
or interest list for individuals with autism into a waiting list
that prioritizes individuals according to the categories of
emergency needs, critical needs and planning needs. This data
shall be collected using a tool that measures the level of care
needed and that does not limit such assessment data collection
based on the geographic area where autism services are provided
in this Commonwealth. Additionally, the prioritization of need
shall not include consideration of services the individual with
autism currently receives.
(b) Waiting list plan.--Within one year of the effective
date of this section, the department shall, as part of a
stakeholder process with participation by individuals with
disabilities or autism and their family members, develop a five-
year plan to eliminate the current as well as any future
additions to the critical and emergency waiting list for
individuals with intellectual disabilities or autism who are in
need of home-based and community-based supports and services.
Within one year of the effective date of this section, the
department shall develop a two-year plan to eliminate the
current as well as any future additions to the home-based and
community-based services waiting list for individuals with
autism and to prevent future home-based and community-based
services waiting lists for all other persons with disabilities,
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including those with physical and developmental disabilities,
including brain injury. The department shall submit the plans to
the Governor, the General Assembly and the county intellectual
disability program administrators.
(c) Contents of plan.--The plans required by subsection (b)
shall include:
(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 plan update.
(d) Public hearings and comment.--In the development of the
plans required by subsection (b), the department shall conduct
public hearings and obtain public comment from individuals with
disabilities, including those with intellectual disabilities or
autism, their families and guardians and providers of services
to the disability community, including the intellectual
disabilities and autism community.
(e) Annual submission of updated plan.--The department shall
update the budget, statistical and financial data to the plans
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required by subsection (b) annually and submit updated plans to
the Governor, the General Assembly and the county intellectual
disability program administrators on the anniversary date of the
department's original submission of the plans.
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. Report.
(a) General rule.--The department shall submit a written
report by September 30, 2017, and every four months thereafter,
to the following:
(1) The Governor.
(2) The chairperson and minority chairperson of the
Public Health and Welfare Committee of the Senate.
(3) The chairperson and minority chairperson of the
Appropriations Committee of the Senate.
(4) The chairperson and minority chairperson of the
Health Committee of the House of Representatives.
(5) The chairperson and minority chairperson of the
Human Services Committee of the House of Representatives.
(6) The chairperson and minority chairperson of the
Appropriations Committee of the House of Representatives.
(7) The department's Medical Assistance Advisory
Committee.
(b) Posting of report.--The report shall be posted on the
department's publicly accessible Internet website in an
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accessible format.
(c) Contents of report.--The report shall include the
following:
(1) The total number and age ranges, including under 18
years of age, 18 to 21 years of age and over 21 years of age,
of individuals currently on the department's waiting list for
home-based and community-based services for individuals with
intellectual disabilities or autism.
(2) The number and age ranges, including under 18 years
of age, 18 to 21 years of age and over 21 years of age, of
individuals currently on the department's waiting list for
home-based and community-based services for individuals with
intellectual disabilities or autism:
(i) with emergency needs;
(ii) with critical needs; and
(iii) the combined number of those with emergency
needs and critical needs.
(3) The number of individuals added to the department's
waiting list for home-based and community-based services for
individuals with intellectual disabilities or autism in the
last four months and the reasons they were added to the
waiting list.
(4) The number of individuals removed from the
department's waiting list for home-based and community-based
services for individuals with intellectual disabilities or
autism in the last four months and the reasons they were
removed from the waiting list.
(5) The number of months or years that individuals with
emergency needs currently on the department's waiting list
for home-based and community-based services for individuals
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with intellectual disabilities or autism have been on the
waiting list.
(6) The number of months or years that individuals with
critical needs currently on the department's waiting list for
home-based and community-based services for individuals with
intellectual disabilities or autism have been on the waiting
list.
(7) The number and age ranges, including under 18 years
of age, 18 to 21 years of age and over 21 years of age, of
individuals currently on the department's waiting list for
home-based and community-based services for individuals with
intellectual disabilities or autism who are in:
(i) a State center;
(ii) a private intermediate care facility for
individuals with intellectual disabilities (ICF/IID) or
persons with other related conditions (ICF/ORC);
(iii) a State hospital;
(iv) a private psychiatric hospital;
(v) a residential treatment facility; or
(vi) any other public or private facility or other
institutional setting.
(8) The total number and age ranges, including under 18
years of age, 18 to 21 years of age and over 21 years of age,
of individuals currently on the department's waiting list or
interest list for the adult community autism program and the
adult autism waiver.
(9) The total number and age ranges, including under 18
years of age, 18 to 21 years of age and over 21 years of age,
of individuals currently on the department's waiting list or
interest list for the adult community autism program and the
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adult autism waiver:
(i) with emergency needs;
(ii) with critical needs; and
(iii) the combined number of those with emergency
needs and critical needs.
(10) The number of individuals added to the department's
waiting list or interest list for the adult community autism
program and the adult autism waiver in the last four months
and the reasons they were added to the waiting list.
(11) The number of individuals removed from the
department's waiting list or interest list for the adult
community autism program and the adult autism waiver in the
last four months and the reasons they were removed from the
waiting list.
(12) The number of months or years that individuals with
emergency needs currently on the department's waiting list or
interest list for the adult community autism program and the
adult autism waiver have been on the waiting list.
(13) The number of months or years that individuals with
critical needs currently on the department's waiting list or
interest list for the adult community autism program and the
adult autism waiver have been on the waiting list.
(14) The total number and age ranges, including under 18
years of age, 18 to 21 years of age and over 21 years of age,
of individuals currently on the department's waiting list or
interest list for the adult community autism program and the
adult autism waiver who are in:
(i) a State center;
(ii) a private intermediate care facility for
individuals with intellectual disabilities (ICF/IID) or
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persons with other related conditions (ICF/ORC);
(iii) a State hospital;
(iv) a private psychiatric hospital;
(v) a residential treatment facility; or
(vi) any other public or private facility or other
institutional setting.
(15) The estimated per-person cost to serve an eligible
individual on the waiting list under paragraph (1).
(16) The estimated per-person cost to serve an eligible
individual on the waiting list or interest list under
paragraph (8).
(17) The total estimated cost to serve all eligible
individuals on the waiting list under paragraph (1) and the
estimated cost to serve all eligible individuals in each
category listed under paragraph (2).
(18) The total estimated cost to serve all eligible
individuals on the waiting list or interest list under
paragraph (8) and the estimated cost to serve all eligible
individuals in each category listed under paragraph (9).
Section 8. Effective date.
This act shall take effect immediately.
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