I
106TH CONGRESS
2D SESSION
H. R. 4920
To improve service systems for individuals with developmental disabilities,
and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
JULY 24, 2000
Mr. LAZIO (for himself, Mr. HOYER, Mr. BLILEY, Mr. DINGELL, Mr. BILI-
RAKIS, and Mr. BROWN of Ohio) introduced the following bill; which was
referred to the Committee on Commerce, and in addition to the Com-
mittee on Education and the Workforce, for a period to be subsequently
determined by the Speaker, in each case for consideration of such provi-
sions as fall within the jurisdiction of the committee concerned
A BILL
To improve service systems for individuals with
developmental disabilities, and for other purposes.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) SHORT TITLE.—This Act may be cited as the
‘‘Developmental Disabilities Assistance and Bill of Rights
Act of 2000’’.
(b) TABLE OF CONTENTS.—The table of contents of
this Act is as follows:
Sec. 1. Short title; table of contents.
TITLE I—PROGRAMS FOR INDIVIDUALS WITH DEVELOPMENTAL
DISABILITIES
Subtitle A—General Provisions
Sec. 101. Findings, purposes, and policy.
Sec. 102. Definitions.
Sec. 103. Records and audits.
Sec. 104. Responsibilities of the Secretary.
Sec. 105. Reports of the Secretary.
Sec. 106. State control of operations.
Sec. 107. Employment of individuals with disabilities.
Sec. 108. Construction.
Sec. 109. Rights of individuals with developmental disabilities.
Subtitle B—Federal Assistance to State Councils on Developmental
Disabilities
Sec. 121. Purpose.
Sec. 122. State allotments.
Sec. 123. Payments to the States for planning, administration, and services.
Sec. 124. State plan.
Sec. 125. State Councils on Developmental Disabilities and designated State
agencies.
Sec. 126. Federal and non-Federal share.
Sec. 127. Withholding of payments for planning, administration, and services.
Sec. 128. Appeals by States.
Sec. 129. Authorization of appropriations.
Subtitle C—Protection and Advocacy of Individual Rights
Sec. 141. Purpose.
Sec. 142. Allotments and payments.
Sec. 143. System required.
Sec. 144. Administration.
Sec. 145. Authorization of appropriations.
Subtitle D—National Network of University Centers for Excellence in
Developmental Disabilities Education, Research, and Service
Sec. 151. Grant authority.
Sec. 152. Grant awards.
Sec. 153. Purpose and scope of activities.
Sec. 154. Applications.
Sec. 155. Definition.
Sec. 156. Authorization of appropriations.
Subtitle E—Projects of National Significance
Sec. 161. Purpose.
Sec. 162. Grant authority.
Sec. 163. Authorization of appropriations.
TITLE II—FAMILY SUPPORT
Sec. 201. Short title.
(2) in 1999, there were between 3,200,000 and
4,500,000 individuals with developmental disabilities
in the United States, and recent studies indicate
that individuals with developmental disabilities com-
prise between 1.2 and 1.65 percent of the United
States population;
(3) individuals whose disabilities occur during
their developmental period frequently have severe
disabilities that are likely to continue indefinitely;
(4) individuals with developmental disabilities
often encounter discrimination in the provision of
critical services, such as services in the areas of em-
phasis (as defined in section 102);
(5) individuals with developmental disabilities
are at greater risk than the general population of
abuse, neglect, financial and sexual exploitation, and
the violation of their legal and human rights;
(6) a substantial portion of individuals with de-
velopmental disabilities and their families do not
have access to appropriate support and services, in-
cluding access to assistive technology, from generic
and specialized service systems, and remain unserved
or underserved;
(7) individuals with developmental disabilities
often require lifelong community services, individual-
ized supports, and other forms of assistance, that
are most effective when provided in a coordinated
manner;
(8) there is a need to ensure that services, sup-
ports, and other assistance are provided in a cul-
turally competent manner, that ensures that individ-
uals from racial and ethnic minority backgrounds
are fully included in all activities provided under this
title;
(9) family members, friends, and members of
the community can play an important role in en-
hancing the lives of individuals with developmental
disabilities, especially when the family members,
friends, and community members are provided with
the necessary community services, individualized
supports, and other forms of assistance;
(10) current research indicates that 88 percent
of individuals with developmental disabilities live
with their families or in their own households;
(11) many service delivery systems and commu-
nities are not prepared to meet the impending needs
of the 479,862 adults with developmental disabilities
who are living at home with parents who are 60
years old or older and who serve as the primary
caregivers of the adults;
(12) in almost every State, individuals with de-
velopmental disabilities are waiting for appropriate
services in their communities, in the areas of empha-
sis;
(13) the public needs to be made more aware
of the capabilities and competencies of individuals
with developmental disabilities, particularly in cases
in which the individuals are provided with necessary
services, supports, and other assistance;
(14) as increasing numbers of individuals with
developmental disabilities are living, learning, work-
ing, and participating in all aspects of community
life, there is an increasing need for a well trained
workforce that is able to provide the services, sup-
ports, and other forms of direct assistance required
to enable the individuals to carry out those activities;
(15) there needs to be greater effort to recruit
individuals from minority backgrounds into profes-
sions serving individuals with developmental disabil-
ities and their families;
(16) the goals of the Nation properly include a
goal of providing individuals with developmental dis-
abilities with the information, skills, opportunities,
and support to—
(A) make informed choices and decisions
about their lives;
(B) live in homes and communities in
which such individuals can exercise their full
rights and responsibilities as citizens;
(C) pursue meaningful and productive
lives;
(D) contribute to their families, commu-
nities, and States, and the Nation;
(E) have interdependent friendships and
relationships with other persons;
(F) live free of abuse, neglect, financial
and sexual exploitation, and violations of their
legal and human rights; and
(G) achieve full integration and inclusion
in society, in an individualized manner, con-
sistent with the unique strengths, resources,
priorities, concerns, abilities, and capabilities of
each individual; and
(17) as the Nation, States, and communities
maintain and expand community living options for
individuals with developmental disabilities, there is a
need to evaluate the access to those options by indi-
viduals with developmental disabilities and the ef-
fects of those options on individuals with develop-
mental disabilities.
(b) PURPOSE.—The purpose of this title is to assure
that individuals with developmental disabilities and their
families participate in the design of and have access to
needed community services, individualized supports, and
other forms of assistance that promote self-determination,
independence, productivity, and integration and inclusion
in all facets of community life, through culturally com-
petent programs authorized under this title, including
specifically—
(1) State Councils on Developmental Disabil-
ities in each State to engage in advocacy, capacity
building, and systemic change activities that—
(A) are consistent with the purpose de-
scribed in this subsection and the policy de-
scribed in subsection (c); and
(B) contribute to a coordinated, consumer-
and family-centered, consumer- and family-di-
rected, comprehensive system that includes
needed community services, individualized sup-
ports, and other forms of assistance that pro-
mote self-determination for individuals with de-
velopmental disabilities and their families;
(2) protection and advocacy systems in each
State to protect the legal and human rights of indi-
viduals with developmental disabilities;
(3) University Centers for Excellence in Devel-
opmental Disabilities Education, Research, and
Service—
(A) to provide interdisciplinary pre-service
preparation and continuing education of stu-
dents and fellows, which may include the prepa-
ration and continuing education of leadership,
direct service, clinical, or other personnel to
strengthen and increase the capacity of States
and communities to achieve the purpose of this
title;
(B) to provide community services—
(i) that provide training and technical
assistance for individuals with develop-
mental disabilities, their families, profes-
sionals, paraprofessionals, policymakers,
students, and other members of the com-
munity; and
(ii) that may provide services, sup-
ports, and assistance for the persons de-
scribed in clause (i) through demonstration
and model activities;
(C) to conduct research, which may include
basic or applied research, evaluation, and the
analysis of public policy in areas that affect or
could affect, either positively or negatively, indi-
viduals with developmental disabilities and their
families; and
(D) to disseminate information related to
activities undertaken to address the purpose of
this title, especially dissemination of informa-
tion that demonstrates that the network author-
ized under this subtitle is a national and inter-
national resource that includes specific sub-
stantive areas of expertise that may be accessed
and applied in diverse settings and cir-
cumstances; and
(4) funding for—
(A) national initiatives to collect necessary
data on issues that are directly or indirectly rel-
evant to the lives of individuals with develop-
mental disabilities;
(B) technical assistance to entities who en-
gage in or intend to engage in activities con-
sistent with the purpose described in this sub-
section or the policy described in subsection (c);
and
(C) other nationally significant activities.
(c) POLICY.—It is the policy of the United States
that all programs, projects, and activities receiving assist-
ance under this title shall be carried out in a manner con-
sistent with the principles that—
(1) individuals with developmental disabilities,
including those with the most severe developmental
disabilities, are capable of self-determination, inde-
pendence, productivity, and integration and inclusion
in all facets of community life, but often require the
provision of community services, individualized sup-
ports, and other forms of assistance;
(2) individuals with developmental disabilities
and their families have competencies, capabilities,
and personal goals that should be recognized, sup-
ported, and encouraged, and any assistance to such
individuals should be provided in an individualized
manner, consistent with the unique strengths, re-
sources, priorities, concerns, abilities, and capabili-
ties of such individuals;
(3) individuals with developmental disabilities
and their families are the primary decisionmakers
regarding the services and supports such individuals
and their families receive, including regarding choos-
ing where the individuals live from available options,
and play decisionmaking roles in policies and pro-
grams that affect the lives of such individuals and
their families;
(4) services, supports, and other assistance
should be provided in a manner that demonstrates
respect for individual dignity, personal preferences,
and cultural differences;
(5) specific efforts must be made to ensure that
individuals with developmental disabilities from ra-
cial and ethnic minority backgrounds and their fami-
lies enjoy increased and meaningful opportunities to
access and use community services, individualized
supports, and other forms of assistance available to
other individuals with developmental disabilities and
their families;
(6) recruitment efforts in disciplines related to
developmental disabilities relating to pre-service
training, community training, practice, administra-
tion, and policymaking must focus on bringing larg-
er numbers of racial and ethnic minorities into the
disciplines in order to provide appropriate skills,
knowledge, role models, and sufficient personnel to
address the growing needs of an increasingly diverse
population;
(7) with education and support, communities
can be accessible to and responsive to the needs of
individuals with developmental disabilities and their
families and are enriched by full and active partici-
pation in community activities, and contributions, by
individuals with developmental disabilities and their
families;
(8) individuals with developmental disabilities
have access to opportunities and the necessary sup-
port to be included in community life, have inter-
dependent relationships, live in homes and commu-
nities, and make contributions to their families, com-
munities, and States, and the Nation;
(9) efforts undertaken to maintain or expand
community-based living options for individuals with
disabilities should be monitored in order to deter-
mine and report to appropriate individuals and enti-
ties the extent of access by individuals with develop-
mental disabilities to those options and the extent of
compliance by entities providing those options with
quality assurance standards;
(10) families of children with developmental dis-
abilities need to have access to and use of safe and
appropriate child care and before-school and after-
school programs, in the most integrated settings, in
order to enrich the participation of the children in
community life;
(11) individuals with developmental disabilities
need to have access to and use of public transpor-
tation, in order to be independent and directly con-
tribute to and participate in all facets of community
life; and
(12) individuals with developmental disabilities
need to have access to and use of recreational, lei-
sure, and social opportunities in the most integrated
settings, in order to enrich their participation in
community life.
SEC. 102. DEFINITIONS.
In this title:
(1) AMERICAN INDIAN CONSORTIUM.—The term
‘‘American Indian Consortium’’ means any confed-
eration of 2 or more recognized American Indian
tribes, created through the official action of each
participating tribe, that has a combined total resi-
dent population of 150,000 enrolled tribal members
and a contiguous territory of Indian lands in 2 or
more States.
(2) AREAS OF EMPHASIS.—The term ‘‘areas of
emphasis’’ means the areas related to quality assur-
ance activities, education activities and early inter-
vention activities, child care-related activities, health-
related 
activities, 
employment-related 
activities,
housing-related activities, transportation-related ac-
tivities, recreation-related activities, and other serv-
ices available or offered to individuals in a commu-
nity, including formal and informal community sup-
ports, that affect their quality of life.
(3) ASSISTIVE
TECHNOLOGY
DEVICE.—The
term ‘‘assistive technology device’’ means any item,
piece of equipment, or product system, whether ac-
quired commercially, modified or customized, that is
used to increase, maintain, or improve functional ca-
pabilities of individuals with developmental disabil-
ities.
(4) ASSISTIVE
TECHNOLOGY
SERVICE.—The
term ‘‘assistive technology service’’ means any serv-
ice that directly assists an individual with a develop-
mental disability in the selection, acquisition, or use
of an assistive technology device. Such term
includes—
(A) conducting an evaluation of the needs
of an individual with a developmental disability,
including a functional evaluation of the indi-
vidual in the individual’s customary environ-
ment;
(B) purchasing, leasing, or otherwise pro-
viding for the acquisition of an assistive tech-
nology device by an individual with a develop-
mental disability;
(C) selecting, designing, fitting, custom-
izing, adapting, applying, maintaining, repair-
ing or replacing an assistive technology device;
(D) coordinating and using another ther-
apy, intervention, or service with an assistive
technology device, such as a therapy, interven-
tion, or service associated with an education or
rehabilitation plan or program;
(E) providing training or technical assist-
ance for an individual with a developmental dis-
ability, or, where appropriate, a family member,
guardian, advocate, or authorized representative
of an individual with a developmental disability;
and
(F) providing training or technical assist-
ance for professionals (including individuals
providing education and rehabilitation services),
employers, or other individuals who provide
services to, employ, or are otherwise substan-
tially involved in the major life functions of, an
individual with developmental disabilities.
(5) CENTER.—The term ‘‘Center’’ means a
University Center for Excellence in Developmental
Disabilities Education, Research, and Service estab-
lished under subtitle D.
(6) CHILD
CARE-RELATED
ACTIVITIES.—The
term ‘‘child care-related activities’’ means advocacy,
capacity building, and systemic change activities
that result in families of children with developmental
disabilities having access to and use of child care
services, including before-school, after-school, and
out-of-school services, in their communities.
(7) CULTURALLY COMPETENT.—The term ‘‘cul-
turally competent’’, used with respect to services,
supports, or other assistance, means services, sup-
ports, or other assistance that is conducted or pro-
vided in a manner that is responsive to the beliefs,
interpersonal styles, attitudes, language, and behav-
iors of individuals who are receiving the services,
supports, or other assistance, and in a manner that
has the greatest likelihood of ensuring their max-
imum participation in the program involved.
(8) DEVELOPMENTAL DISABILITY.—
(A) IN
GENERAL.—The term ‘‘develop-
mental disability’’ means a severe, chronic dis-
ability of an individual that—
and are individually planned and coordi-
nated.
(B) INFANTS AND YOUNG CHILDREN.—An
individual from birth to age 9, inclusive, who
has a substantial developmental delay or spe-
cific congenital or acquired condition, may be
considered to have a developmental disability
without meeting 3 or more of the criteria de-
scribed in clauses (i) through (v) of subpara-
graph (A) if the individual, without services and
supports, has a high probability of meeting
those criteria later in life.
(9) EARLY
INTERVENTION
ACTIVITIES.—The
term ‘‘early intervention activities’’ means advocacy,
capacity building, and systemic change activities pro-
vided to individuals described in paragraph (8)(B)
and their families to enhance—
(A) the development of the individuals to
maximize their potential; and
(B) the capacity of families to meet the
special needs of the individuals.
(10) EDUCATION ACTIVITIES.—The term ‘‘edu-
cation activities’’ means advocacy, capacity building,
and systemic change activities that result in individ-
uals with developmental disabilities being able to ac-
cess appropriate supports and modifications when
necessary, to maximize their educational potential,
to benefit from lifelong educational activities, and to
be integrated and included in all facets of student
life.
(11) EMPLOYMENT-RELATED ACTIVITIES.—The
term ‘‘employment-related activities’’ means advo-
cacy, capacity building, and systemic change activi-
ties that result in individuals with developmental dis-
abilities acquiring, retaining, or advancing in paid
employment, including supported employment or
self-employment, in integrated settings in a commu-
nity.
(12) FAMILY SUPPORT SERVICES.—
(A) IN GENERAL.—The term ‘‘family sup-
port services’’ means services, supports, and
other assistance, provided to families with mem-
bers who have developmental disabilities, that
are designed to—
(i) strengthen the family’s role as pri-
mary caregiver;
(ii) prevent inappropriate out-of-the-
home placement of the members and main-
tain family unity; and
(iii) reunite families with members
who have been placed out of the home
whenever possible.
(B) SPECIFIC
SERVICES.—Such term in-
cludes respite care, provision of rehabilitation
technology and assistive technology, personal
assistance services, parent training and coun-
seling, support for families headed by aging
caregivers, vehicular and home modifications,
and assistance with extraordinary expenses, as-
sociated with the needs of individuals with de-
velopmental disabilities.
(13) HEALTH-RELATED ACTIVITIES.—The term
‘‘health-related activities’’ means advocacy, capacity
building, and systemic change activities that result
in individuals with developmental disabilities having
access to and use of coordinated health, dental, men-
tal health, and other human and social services, in-
cluding prevention activities, in their communities.
(14) 
HOUSING-RELATED
ACTIVITIES.—The
term ‘‘housing-related activities’’ means advocacy,
capacity building, and systemic change activities
that result in individuals with developmental disabil-
ities having access to and use of housing and hous-
ing supports and services in their communities, in-
cluding assistance related to renting, owning, or
modifying an apartment or home.
(15) INCLUSION.—The term ‘‘inclusion’’, used
with respect to individuals with developmental dis-
abilities, means the acceptance and encouragement
of the presence and participation of individuals with
developmental disabilities, by individuals without dis-
abilities, in social, educational, work, and community
activities, that enables individuals with develop-
mental disabilities to—
(A) have friendships and relationships with
individuals and families of their own choice;
(B) live in homes close to community re-
sources, with regular contact with individuals
without disabilities in their communities;
(C) enjoy full access to and active partici-
pation in the same community activities and
types of employment as individuals without dis-
abilities; and
(D) take full advantage of their integration
into the same community resources as individ-
uals without disabilities, living, learning, work-
ing, and enjoying life in regular contact with in-
dividuals without disabilities.
(16) INDIVIDUALIZED
SUPPORTS.—The term
‘‘individualized supports’’ means supports that—
(A) enable an individual with a develop-
mental disability to exercise self-determination,
be independent, be productive, and be inte-
grated and included in all facets of community
life;
(B) are designed to—
(i) enable such individual to control
such individual’s environment, permitting
the most independent life possible;
(ii) prevent placement into a more re-
strictive living arrangement than is nec-
essary; and
(iii) enable such individual to live,
learn, work, and enjoy life in the commu-
nity; and
(C) include—
(i) early intervention services;
(ii) respite care;
(iii) personal assistance services;
(iv) family support services;
(v) supported employment services;
(vi) support services for families head-
ed by aging caregivers of individuals with
developmental disabilities; and
(vii) provision of rehabilitation tech-
nology and assistive technology, and assist-
ive technology services.
(17) INTEGRATION.—The term ‘‘integration’’,
used with respect to individuals with developmental
disabilities, means exercising the equal right of indi-
viduals with developmental disabilities to access and
use the same community resources as are used by
and available to other individuals.
(18) NOT-FOR-PROFIT.—The term ‘‘not-for-
profit’’, used with respect to an agency, institution,
or organization, means an agency, institution, or or-
ganization that is owned or operated by 1 or more
corporations or associations, no part of the net earn-
ings of which inures, or may lawfully inure, to the
benefit of any private shareholder or individual.
(19) PERSONAL
ASSISTANCE
SERVICES.—The
term ‘‘personal assistance services’’ means a range
of services, provided by 1 or more individuals, de-
signed to assist an individual with a disability to
perform daily activities, including activities on or off
a job that such individual would typically perform if
(B) engagement in work that contributes
to a household or community.
(22) PROTECTION AND ADVOCACY SYSTEM.—
The term ‘‘protection and advocacy system’’ means
a protection and advocacy system established in ac-
cordance with section 143.
(23) QUALITY
ASSURANCE
ACTIVITIES.—The
term ‘‘quality assurance activities’’ means advocacy,
capacity building, and systemic change activities
that result in improved consumer- and family-cen-
tered quality assurance and that result in systems of
quality assurance and consumer protection that—
(A) include monitoring of services, sup-
ports, and assistance provided to an individual
with developmental disabilities that ensures that
the individual—
(i) will not experience abuse, neglect,
sexual or financial exploitation, or violation
of legal or human rights; and
(ii) will not be subject to the inappro-
priate use of restraints or seclusion;
(B) include training in leadership, self-ad-
vocacy, and self-determination for individuals
with developmental disabilities, their families,
and their guardians to ensure that those
individuals—
(i) will not experience abuse, neglect,
sexual or financial exploitation, or violation
of legal or human rights; and
(ii) will not be subject to the inappro-
priate use of restraints or seclusion; or
(C) include activities related to interagency
coordination and systems integration that result
in improved and enhanced services, supports,
and other assistance that contribute to and pro-
tect the self-determination, independence, pro-
ductivity, and integration and inclusion in all
facets of community life, of individuals with de-
velopmental disabilities.
(24) RECREATION-RELATED
ACTIVITIES.—The
term ‘‘recreation-related activities’’ means advocacy,
capacity building, and systemic change activities
that result in individuals with developmental disabil-
ities having access to and use of recreational, leisure,
and social activities, in their communities.
(25) 
REHABILITATION
TECHNOLOGY.—The
term ‘‘rehabilitation technology’’ means the system-
atic application of technologies, engineering meth-
odologies, or scientific principles to meet the needs
of, and address the barriers confronted by, individ-
uals with developmental disabilities in areas that in-
clude education, rehabilitation, employment, trans-
portation, independent living, and recreation. Such
term includes rehabilitation engineering, and the
provision of assistive technology devices and assistive
technology services.
(26) 
SECRETARY.—The 
term 
‘‘Secretary’’
means the Secretary of Health and Human Services.
(27) SELF-DETERMINATION
ACTIVITIES.—The
term ‘‘self-determination activities’’ means activities
that result in individuals with developmental disabil-
ities, with appropriate assistance, having—
(A) the ability and opportunity to commu-
nicate and make personal decisions;
(B) the ability and opportunity to commu-
nicate choices and exercise control over the type
and intensity of services, supports, and other
assistance the individuals receive;
(C) the authority to control resources to
obtain needed services, supports, and other as-
sistance;
(D) opportunities to participate in, and
contribute to, their communities; and
(E) support, including financial support, to
advocate for themselves and others, to develop
leadership skills, through training in self-advo-
cacy, to participate in coalitions, to educate pol-
icymakers, and to play a role in the develop-
ment of public policies that affect individuals
with developmental disabilities.
(28) STATE.—The term ‘‘State’’, except as oth-
erwise provided, includes, in addition to each of the
several States of the United States, the District of
Columbia, the Commonwealth of Puerto Rico, the
United States Virgin Islands, Guam, American
Samoa, and the Commonwealth of the Northern
Mariana Islands.
(29) STATE COUNCIL ON DEVELOPMENTAL DIS-
ABILITIES.—The term ‘‘State Council on Develop-
mental Disabilities’’ means a Council established
under section 125.
(30) SUPPORTED
EMPLOYMENT
SERVICES.—
The term ‘‘supported employment services’’ means
services that enable individuals with developmental
disabilities to perform competitive work in integrated
work settings, in the case of individuals with devel-
opmental disabilities—
(A)(i) for whom competitive employment
has not traditionally occurred; or
(ii) for whom competitive employment has
been interrupted or intermittent as a result of
significant disabilities; and
(B) who, because of the nature and sever-
ity of their disabilities, need intensive supported
employment services or extended services in
order to perform such work.
(31) TRANSPORTATION-RELATED ACTIVITIES.—
The term ‘‘transportation-related activities’’ means
advocacy, capacity building, and systemic change ac-
tivities that result in individuals with developmental
disabilities having access to and use of transpor-
tation.
(32) UNSERVED
AND
UNDERSERVED.—The
term ‘‘unserved and underserved’’ includes popu-
lations such as individuals from racial and ethnic
minority backgrounds, disadvantaged individuals, in-
dividuals with limited English proficiency, individ-
uals from underserved geographic areas (rural or
urban), and specific groups of individuals within the
population of individuals with developmental disabil-
ities, including individuals who require assistive tech-
nology in order to participate in and contribute to
community life.
SEC. 103. RECORDS AND AUDITS.
(a) RECORDS.—Each recipient of assistance under
this title shall keep such records as the Secretary shall
prescribe, including—
(1) records that fully disclose—
(A) the amount and disposition by such re-
cipient of the assistance;
(B) the total cost of the project or under-
taking in connection with which such assistance
is given or used; and
(C) the amount of that portion of the cost
of the project or undertaking that is supplied
by other sources; and
(2) such other records as will facilitate an effec-
tive audit.
(b) ACCESS.—The Secretary and the Comptroller
General of the United States, or any of their duly author-
ized representatives, shall have access for the purpose of
audit and examination to any books, documents, papers,
and records of the recipients of assistance under this title
that are pertinent to such assistance.
SEC. 104. RESPONSIBILITIES OF THE SECRETARY.
(a) PROGRAM ACCOUNTABILITY.—
(1) IN GENERAL.—In order to monitor entities
that received funds under this Act to carry out ac-
tivities under subtitles B, C, and D and determine
the extent to which the entities have been responsive
to the purpose of this title and have taken actions
consistent with the policy described in section
101(c), the Secretary shall develop and implement
an accountability process as described in this sub-
section, with respect to activities conducted after Oc-
tober 1, 2001.
(2) AREAS OF EMPHASIS.—The Secretary shall
develop a process for identifying and reporting (pur-
suant to section 105) on progress achieved through
advocacy, capacity building, and systemic change ac-
tivities, undertaken by the entities described in para-
graph (1), that resulted in individuals with develop-
mental disabilities and their families participating in
the design of and having access to needed commu-
nity services, individualized supports, and other
forms of assistance that promote self-determination,
independence, productivity, and integration and in-
clusion in all facets of community life. Specifically,
the Secretary shall develop a process for identifying
and reporting on progress achieved, through advo-
cacy, capacity building, and systemic change activi-
ties, by the entities in the areas of emphasis.
(3) INDICATORS OF PROGRESS.—
(A) IN GENERAL.—In identifying progress
made by the entities described in paragraph (1)
in the areas of emphasis, the Secretary, in con-
sultation with the Commissioner of the Admin-
istration on Developmental Disabilities and the
entities, shall develop indicators for each area
of emphasis.
(B) PROPOSED
INDICATORS.—Not later
than 180 days after the date of enactment of
this Act, the Secretary shall develop and pub-
lish in the Federal Register for public comment
proposed indicators of progress for monitoring
how entities described in paragraph (1) have
addressed the areas of emphasis described in
paragraph (2) in a manner that is responsive to
the purpose of this title and consistent with the
policy described in section 101(c).
(C) FINAL
INDICATORS.—Not later than
October 1, 2001, the Secretary shall revise the
proposed indicators of progress, to the extent
necessary based on public comment, and pub-
lish final indicators of progress in the Federal
Register.
(D) SPECIFIC MEASURES.—At a minimum,
the indicators of progress shall be used to de-
scribe and measure—
(i) the satisfaction of individuals with
developmental disabilities with the advo-
cacy, capacity building, and systemic
change activities provided under subtitles
B, C, and D;
(ii) the extent to which the advocacy,
capacity building, and systemic change ac-
tivities provided through subtitles B, C,
and D result in improvements in—
(I) the ability of individuals with
developmental disabilities to make
choices and exert control over the
type, intensity, and timing of services,
supports, and assistance that the indi-
viduals have used;
(II) the ability of individuals with
developmental disabilities to partici-
pate in the full range of community
life with persons of the individuals’
choice; and
(III) the ability of individuals
with developmental disabilities to ac-
cess services, supports, and assistance
in a manner that ensures that such an
individual is free from abuse, neglect,
sexual and financial exploitation, vio-
lation of legal and human rights, and
the inappropriate use of restraints
and seclusion; and
(iii) the extent to which the entities
described in paragraph (1) collaborate with
each other to achieve the purpose of this
title and the policy described in section
101(c).
(4) TIME LINE FOR COMPLIANCE WITH INDICA-
TORS OF PROGRESS.—The Secretary shall require
entities described in paragraph (1) to meet the indi-
cators of progress described in paragraph (3). For
fiscal year 2002 and each year thereafter, the Sec-
retary shall apply the indicators in monitoring enti-
ties described in paragraph (1), with respect to ac-
tivities conducted after October 1, 2001.
(b) TIME LINE FOR REGULATIONS.—Except as oth-
erwise expressly provided in this title, the Secretary, not
later than 1 year after the date of enactment of this Act,
shall promulgate such regulations as may be required for
the implementation of this title.
(c) INTERAGENCY COMMITTEE.—
(1) IN GENERAL.—The Secretary shall main-
tain the interagency committee authorized in section
108 of the Developmental Disabilities Assistance
and Bill of Rights Act (42 U.S.C. 6007) as in effect
on the day before the date of enactment of this Act,
except as otherwise provided in this subsection.
(2) COMPOSITION.—The interagency committee
shall be composed of representatives of—
(A) the Administration on Developmental
Disabilities, the Administration on Children,
Youth, and Families, the Administration on
Aging, and the Health Resources and Services
Administration, of the Department of Health
and Human Services; and
(B) such other Federal departments and
agencies as the Secretary of Health and Human
Services considers to be appropriate.
(3) DUTIES.—Such interagency committee shall
meet regularly to coordinate and plan activities con-
ducted by Federal departments and agencies for in-
dividuals with developmental disabilities.
(4) MEETINGS.—Each meeting of the inter-
agency committee (except for any meetings of any
subcommittees of the committee) shall be open to
the public. Notice of each meeting, and a statement
of the agenda for the meeting, shall be published in
the Federal Register not later than 14 days before
the date on which the meeting is to occur.
SEC. 105. REPORTS OF THE SECRETARY.
At least once every 2 years, the Secretary, using in-
formation submitted in the reports and information re-
quired under subtitles B, C, D, and E, shall prepare and
submit to the President, Congress, and the National
Council on Disability, a report that describes the goals and
outcomes of programs supported under subtitles B, C, D,
and E. In preparing the report, the Secretary shall
provide—
(1) meaningful examples of how the councils,
protection and advocacy systems, centers, and enti-
ties funded under subtitles B, C, D, and E,
respectively—
(A) have undertaken coordinated activities
with each other;
(B) have enhanced the ability of individ-
uals with developmental disabilities and their
families to participate in the design of and have
uals are at no greater risk of harm than other
persons in the general population; and
(B) reports of deaths of and serious inju-
ries to individuals with developmental disabil-
ities; and
(3) a summary of any incidents of noncompli-
ance of the programs authorized under this title
with the provisions of this title, and corrections
made or actions taken to obtain compliance.
SEC. 106. STATE CONTROL OF OPERATIONS.
Except as otherwise specifically provided, nothing in
this title shall be construed as conferring on any Federal
officer or employee the right to exercise any supervision
or control over the administration, personnel, mainte-
nance, or operation of any programs, services, and sup-
ports for individuals with developmental disabilities with
respect to which any funds have been or may be expended
under this title.
SEC. 107. EMPLOYMENT OF INDIVIDUALS WITH DISABIL-
ITIES.
As a condition of providing assistance under this title,
the Secretary shall require that each recipient of such as-
sistance take affirmative action to employ and advance in
employment qualified individuals with disabilities on the
same terms and conditions required with respect to the
employment of such individuals under the provisions of
title V of the Rehabilitation Act of 1973 (29 U.S.C. 791
et seq.) and the Americans with Disabilities Act of 1990
(42 U.S.C. 12101 et seq.), that govern employment.
SEC. 108. CONSTRUCTION.
Nothing in this title shall be construed to preclude
an entity funded under this title from engaging in advo-
cacy, capacity building, and systemic change activities for
individuals with developmental disabilities that may also
have a positive impact on individuals with other disabil-
ities.
SEC. 109. RIGHTS OF INDIVIDUALS WITH DEVELOPMENTAL
DISABILITIES.
(a) IN GENERAL.—Congress makes the following
findings respecting the rights of individuals with develop-
mental disabilities:
(1) Individuals with developmental disabilities
have a right to appropriate treatment, services, and
habilitation for such disabilities, consistent with sec-
tion 101(c).
(2) The treatment, services, and habitation for
an individual with developmental disabilities should
be designed to maximize the potential of the indi-
vidual and should be provided in the setting that is
least restrictive of the individual’s personal liberty.
(3) The Federal Government and the States
both have an obligation to ensure that public funds
are provided only to institutional programs, residen-
tial programs, and other community programs, in-
cluding educational programs in which individuals
with developmental disabilities participate, that—
(A) provide treatment, services, and habili-
tation that are appropriate to the needs of such
individuals; and
(B) meet minimum standards relating to—
(i) provision of care that is free of
abuse, neglect, sexual and financial exploi-
tation, and violations of legal and human
rights and that subjects individuals with
developmental disabilities to no greater
risk of harm than others in the general
population;
(ii) provision to such individuals of
appropriate and sufficient medical and
dental services;
(iii) prohibition of the use of physical
restraint and seclusion for such an indi-
vidual unless absolutely necessary to en-
sure the immediate physical safety of the
individual or others, and prohibition of the
use of such restraint and seclusion as a
punishment or as a substitute for a habili-
tation program;
(iv) prohibition of the excessive use of
chemical restraints on such individuals and
the use of such restraints as punishment
or as a substitute for a habilitation pro-
gram or in quantities that interfere with
services, treatment, or habilitation for such
individuals; and
(v) provision for close relatives or
guardians of such individuals to visit the
individuals without prior notice.
(4) All programs for individuals with develop-
mental disabilities should meet standards—
(A) that are designed to assure the most
favorable possible outcome for those served; and
(B)(i) in the case of residential programs
serving individuals in need of comprehensive
health-related, habilitative, assistive technology
or rehabilitative services, that are at least
equivalent to those standards applicable to in-
termediate care facilities for the mentally re-
tarded, promulgated in regulations of the Sec-
retary on June 3, 1988, as appropriate, taking
into account the size of the institutions and the
service delivery arrangements of the facilities of
the programs;
(ii) in the case of other residential pro-
grams for individuals with developmental dis-
abilities, that assure that—
(I) care is appropriate to the needs of
the individuals being served by such pro-
grams;
(II) the individuals admitted to facili-
ties of such programs are individuals
whose needs can be met through services
provided by such facilities; and
(III) the facilities of such programs
provide for the humane care of the resi-
dents of the facilities, are sanitary, and
protect their rights; and
(iii) in the case of nonresidential programs,
that assure that the care provided by such pro-
grams is appropriate to the individuals served
by the programs.
(b) CLARIFICATION.—The rights of individuals with
developmental disabilities described in findings made in
this section shall be considered to be in addition to any
constitutional or other rights otherwise afforded to all in-
dividuals.
Subtitle B—Federal Assistance to
State 
Councils 
on 
Develop-
mental Disabilities
SEC. 121. PURPOSE.
The purpose of this subtitle is to provide for allot-
ments to support State Councils on Developmental Dis-
abilities (referred to individually in this subtitle as a
‘‘Council’’) in each State to—
(1) engage in advocacy, capacity building, and
systemic change activities that are consistent with
the purpose described in section 101(b) and the pol-
icy described in section 101(c); and
(2) contribute to a coordinated, consumer- and
family-centered, consumer- and family-directed, com-
prehensive system of community services, individual-
ized supports, and other forms of assistance that en-
able individuals with developmental disabilities to ex-
ercise self-determination, be independent, be produc-
tive, and be integrated and included in all facets of
community life.
SEC. 122. STATE ALLOTMENTS.
(a) ALLOTMENTS.—
(1) IN GENERAL.—
(A) AUTHORITY.—For each fiscal year, the
Secretary shall, in accordance with regulations
and this paragraph, allot the sums appropriated
for such year under section 129 among the
States on the basis of—
(i) the population;
(ii) the extent of need for services for
individuals with developmental disabilities;
and
(iii) the financial need,
of the respective States.
(B) USE OF FUNDS.—Sums allotted to the
States under this section shall be used to pay
for the Federal share of the cost of carrying out
projects in accordance with State plans ap-
proved under section 124 for the provision
under such plans of services for individuals with
developmental disabilities.
(2) ADJUSTMENTS.—The Secretary may make
adjustments in the amounts of State allotments
based on clauses (i), (ii), and (iii) of paragraph
(1)(A) not more often than annually. The Secretary
shall notify each State of any adjustment made
under this paragraph and the percentage of the total
sums appropriated under section 129 that the ad-
justed allotment represents not later than 6 months
before the beginning of the fiscal year in which such
adjustment is to take effect.
(3) MINIMUM
ALLOTMENT
FOR
APPROPRIA-
TIONS LESS THAN OR EQUAL TO $70,000,000.—
(A) IN GENERAL.—Except as provided in
paragraph (4), for any fiscal year the allotment
under this section—
(i) to each of American Samoa,
Guam, the United States Virgin Islands, or
the Commonwealth of the Northern Mar-
iana Islands may not be less than
$210,000; and
(ii) to any State not described in
clause (i) may not be less than $400,000.
(B) REDUCTION
OF
ALLOTMENT.—Not-
withstanding subparagraph (A), if the aggre-
gate of the amounts to be allotted to the States
pursuant to subparagraph (A) for any fiscal
year exceeds the total amount appropriated
under section 129 for such fiscal year, the
amount to be allotted to each State for such fis-
cal year shall be proportionately reduced.
(4) MINIMUM
ALLOTMENT
FOR
APPROPRIA-
TIONS IN EXCESS OF $70,000,000.—
(A) IN GENERAL.—In any case in which
the total amount appropriated under section
129 for a fiscal year is more than $70,000,000,
the allotment under this section for such fiscal
year—
(i) to each of American Samoa,
Guam, the United States Virgin Islands, or
the Commonwealth of the Northern Mar-
iana Islands may not be less than
$220,000; and
(ii) to any State not described in
clause (i) may not be less than $450,000.
(B) REDUCTION OF ALLOTMENT.—The re-
quirements of paragraph (3)(B) shall apply
with respect to amounts to be allotted to States
under subparagraph (A), in the same manner
and to the same extent as such requirements
apply with respect to amounts to be allotted to
States under paragraph (3)(A).
(5) STATE SUPPORTS, SERVICES, AND OTHER
ACTIVITIES.—In determining, for purposes of para-
graph (1)(A)(ii), the extent of need in any State for
services for individuals with developmental disabil-
ities, the Secretary shall take into account the scope
and extent of the services, supports, and assistance
described, pursuant to section 124(c)(3)(A), in the
State plan of the State.
(6) INCREASE IN ALLOTMENTS.—In any year in
which the total amount appropriated under section
129 for a fiscal year exceeds the total amount appro-
priated under such section (or a corresponding pro-
vision) for the preceding fiscal year by a percentage
greater than the most recent percentage change in
the Consumer Price Index published by the Sec-
retary of Labor under section 100(c)(1) of the Reha-
bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the
percentage change indicates an increase), the Sec-
retary shall increase each of the minimum allot-
ments described in paragraphs (3) and (4). The Sec-
retary shall increase each minimum allotment by an
amount that bears the same ratio to the amount of
such minimum allotment (including any increases in
such minimum allotment under this paragraph (or a
corresponding provision) for prior fiscal years) as
the amount that is equal to the difference between—
(A) the total amount appropriated under
section 129 for the fiscal year for which the in-
crease in the minimum allotment is being made;
minus
(B) the total amount appropriated under
section 129 (or a corresponding provision) for
the immediately preceding fiscal year,
bears to the total amount appropriated under section
129 (or a corresponding provision) for such pre-
ceding fiscal year.
(b) UNOBLIGATED FUNDS.—Any amount paid to a
State for a fiscal year and remaining unobligated at the
end of such year shall remain available to such State for
the next fiscal year for the purposes for which such
amount was paid.
(c) OBLIGATION OF FUNDS.—For the purposes of
this subtitle, State Interagency Agreements are considered
valid obligations for the purpose of obligating Federal
funds allotted to the State under this subtitle.
(d) COOPERATIVE EFFORTS BETWEEN STATES.—If
a State plan approved in accordance with section 124 pro-
vides for cooperative or joint effort between or among
States or agencies, public or private, in more than 1 State,
portions of funds allotted to 1 or more States described
in this subsection may be combined in accordance with the
agreements between the States or agencies involved.
(e) REALLOTMENTS.—
(1) IN GENERAL.—If the Secretary determines
that an amount of an allotment to a State for a pe-
riod (of a fiscal year or longer) will not be required
by the State during the period for the purpose for
which the allotment was made, the Secretary may
reallot the amount.
(2) TIMING.—The Secretary may make such a
reallotment from time to time, on such date as the
Secretary may fix, but not earlier than 30 days after
the Secretary has published notice of the intention
of the Secretary to make the reallotment in the Fed-
eral Register.
(3) AMOUNTS.—The Secretary shall reallot the
amount to other States with respect to which the
Secretary has not made that determination. The
Secretary shall reallot the amount in proportion to
the original allotments of the other States for such
fiscal year, but shall reduce such proportionate
amount for any of the other States to the extent the
proportionate amount exceeds the sum that the Sec-
retary estimates the State needs and will be able to
use during such period.
(4) REALLOTMENT OF REDUCTIONS.—The Sec-
retary shall similarly reallot the total of the reduc-
tions 
among 
the 
States 
whose 
proportionate
amounts were not so reduced.
(5) TREATMENT.—Any amount reallotted to a
State under this subsection for a fiscal year shall be
deemed to be a part of the allotment of the State
under subsection (a) for such fiscal year.
SEC. 123. PAYMENTS TO THE STATES FOR PLANNING, AD-
MINISTRATION, AND SERVICES.
(a) STATE
PLAN
EXPENDITURES.—From each
State’s allotments for a fiscal year under section 122, the
Secretary shall pay to the State the Federal share of the
cost, other than the cost for construction, incurred during
such year for activities carried out under the State plan
approved under section 124. The Secretary shall make
such payments from time to time in advance on the basis
of estimates by the Secretary of the sums the State will
expend for the cost under the State plan. The Secretary
shall make such adjustments as may be necessary to the
payments on account of previously made underpayments
or overpayments under this section.
(b) DESIGNATED STATE AGENCY EXPENDITURES.—
The Secretary may make payments to a State for the por-
tion described in section 124(c)(5)(B)(vi) in advance or
by way of reimbursement, and in such installments as the
Secretary may determine.
SEC. 124. STATE PLAN.
(a) IN GENERAL.—Any State desiring to receive as-
sistance under this subtitle shall submit to the Secretary,
and obtain approval of, a 5-year strategic State plan under
this section.
(b) PLANNING CYCLE.—The plan described in sub-
section (a) shall be updated as appropriate during the 5-
year period.
(c) STATE PLAN REQUIREMENTS.—In order to be
approved by the Secretary under this section, a State plan
shall meet each of the following requirements:
(1) STATE COUNCIL.—The plan shall provide
for the establishment and maintenance of a Council
in accordance with section 125 and describe the
membership of such Council.
(2) DESIGNATED
STATE
AGENCY.—The plan
shall identify the agency or office within the State
designated to support the Council in accordance with
this section and section 125(d) (referred to in this
subtitle as a ‘‘designated State agency’’).
(3) COMPREHENSIVE REVIEW AND ANALYSIS.—
The plan shall describe the results of a comprehen-
sive review and analysis of the extent to which serv-
ices, supports, and other assistance are available to
individuals with developmental disabilities and their
families, and the extent of unmet needs for services,
supports, and other assistance for those individuals
and their families, in the State. The results of the
comprehensive review and analysis shall include—
(A) a description of the services, supports,
and other assistance being provided to individ-
uals with developmental disabilities and their
families under other federally assisted State
programs, plans, and policies under which the
State operates and in which individuals with de-
velopmental disabilities are or may be eligible to
participate, including particularly programs re-
lating to the areas of emphasis, including—
(i) medical assistance, maternal and
child health care, services for children with
special health care needs, children’s mental
health services, comprehensive health and
mental health services, and institutional
care options;
(ii) job training, job placement, work-
site accommodation, and vocational reha-
bilitation, and other work assistance pro-
grams; and
(iii) social, child welfare, aging, inde-
pendent living, and rehabilitation and as-
sistive technology services, and such other
services as the Secretary may specify;
(B) a description of the extent to which
agencies operating such other federally assisted
State programs, including activities authorized
under section 101 or 102 of the Assistive Tech-
nology Act of 1998 (29 U.S.C. 3011, 3012),
pursue interagency initiatives to improve and
enhance community services, individualized sup-
ports, and other forms of assistance for individ-
uals with developmental disabilities;
(C) an analysis of the extent to which com-
munity services and opportunities related to the
areas of emphasis directly benefit individuals
with developmental disabilities, especially with
regard to their ability to access and use services
provided in their communities, to participate in
opportunities, activities, and events offered in
their communities, and to contribute to commu-
nity life, identifying particularly—
(i) the degree of support for individ-
uals with developmental disabilities that
are attributable to either physical impair-
ment, mental impairment, or a combina-
tion of physical and mental impairments;
(ii) criteria for eligibility for services,
including specialized services and special
adaptation of generic services provided by
agencies within the State, that may ex-
clude individuals with developmental dis-
abilities from receiving services described
in this clause;
(iii) the barriers that impede full par-
ticipation of members of unserved and un-
derserved groups of individuals with devel-
opmental disabilities and their families;
(iv) the availability of assistive tech-
nology, assistive technology services, or re-
habilitation technology, or information
about assistive technology, assistive tech-
nology services, or rehabilitation tech-
nology to individuals with developmental
disabilities;
(v) the numbers of individuals with
developmental disabilities on waiting lists
for services described in this subparagraph;
(vi) a description of the adequacy of
current resources and projected availability
of future resources to fund services de-
scribed in this subparagraph;
(vii) a description of the adequacy of
health care and other services, supports,
and assistance that individuals with devel-
opmental disabilities who are in facilities
receive (based in part on each independent
review (pursuant to section 1902(a)(30)(C)
of the Social Security Act (42 U.S.C.
1396a(a)(30)(C))) of an Intermediate Care
Facility (Mental Retardation) within the
State, which the State shall provide to the
Council not later than 30 days after the
availability of the review); and
(viii) to the extent that information is
available, a description of the adequacy of
health care and other services, supports,
and assistance that individuals with devel-
opmental 
disabilities 
who 
are 
served
through home and community-based waiv-
ers (authorized under section 1915(c) of
the 
Social 
Security 
Act 
(42 
U.S.C.
1396n(c))) receive;
(D) a description of how entities funded
under subtitles C and D, through interagency
agreements or other mechanisms, collaborated
with the entity funded under this subtitle in the
State, each other, and other entities to con-
tribute to the achievement of the purpose of
this subtitle; and
(E) the rationale for the goals related to
advocacy, capacity building, and systemic
change to be undertaken by the Council to con-
tribute to the achievement of the purpose of
this subtitle.
(4) PLAN
GOALS.—The plan shall focus on
Council efforts to bring about the purpose of this
subtitle, by—
(A) specifying 5-year goals, as developed
through data driven strategic planning, for ad-
vocacy, capacity building, and systemic change
related to the areas of emphasis, to be under-
taken by the Council, that—
(i) are derived from the unmet needs
of individuals with developmental disabil-
ities and their families identified under
paragraph (3); and
(ii) include a goal, for each year of the
grant, to—
(I) establish or strengthen a pro-
gram for the direct funding of a State
self-advocacy organization led by indi-
viduals with developmental disabilities;
(II) support opportunities for in-
dividuals with developmental disabil-
ities who are considered leaders to
provide leadership training to individ-
uals with developmental disabilities
who may become leaders; and
(III) support and expand partici-
pation of individuals with develop-
mental disabilities in cross-disability
and culturally diverse leadership coali-
tions; and
(B) 
for 
each 
year 
of 
the 
grant,
describing—
(i) the goals to be achieved through
the grant, which, beginning in fiscal year
2002, shall be consistent with applicable
indicators of progress described in section
104(a)(3);
(ii) the strategies to be used in achiev-
ing each goal; and
(iii) the method to be used to deter-
mine if each goal has been achieved.
(5) ASSURANCES.—
(A) IN GENERAL.—The plan shall contain
or be supported by assurances and information
described in subparagraphs (B) through (N)
that are satisfactory to the Secretary.
(B) USE OF FUNDS.—With respect to the
funds paid to the State under section 122, the
plan shall provide assurances that—
(i) not less than 70 percent of such
funds will be expended for activities related
to the goals described in paragraph (4);
(ii) such funds will contribute to the
achievement of the purpose of this subtitle
in various political subdivisions of the
State;
(iii) such funds will be used to supple-
ment, and not supplant, the non-Federal
funds that would otherwise be made avail-
able for the purposes for which the funds
paid under section 122 are provided;
(iv) such funds will be used to com-
plement and augment rather than dupli-
cate or replace services for individuals with
developmental disabilities and their fami-
lies who are eligible for Federal assistance
under other State programs;
(v) part of such funds will be made
available by the State to public or private
entities;
(vi) at the request of any State, a por-
tion of such funds provided to such State
under this subtitle for any fiscal year shall
be available to pay up to 1⁄2 (or the entire
amount if the Council is the designated
State agency) of the expenditures found to
be necessary by the Secretary for the prop-
er and efficient exercise of the functions of
the designated State agency, except that
not more than 5 percent of such funds pro-
vided to such State for any fiscal year, or
$50,000, whichever is less, shall be made
available for total expenditures for such
purpose by the designated State agency;
and
(vii) not more than 20 percent of such
funds will be allocated to the designated
State agency for service demonstrations by
such agency that—
(I) contribute to the achievement
of the purpose of this subtitle; and
(II) are explicitly authorized by
the Council.
(C) STATE
FINANCIAL
PARTICIPATION.—
The plan shall provide assurances that there
will be reasonable State financial participation
in the cost of carrying out the plan.
(D) CONFLICT
OF
INTEREST.—The plan
shall provide an assurance that no member of
such Council will cast a vote on any matter that
would provide direct financial benefit to the
member or otherwise give the appearance of a
conflict of interest.
(E) 
URBAN
AND
RURAL
POVERTY
AREAS.—The plan shall provide assurances that
special financial and technical assistance will be
given to organizations that provide community
services, individualized supports, and other
forms of assistance to individuals with develop-
mental disabilities who live in areas designated
as urban or rural poverty areas.
(F) 
PROGRAM
ACCESSIBILITY
STAND-
ARDS.—The plan shall provide assurances that
programs, projects, and activities funded under
the plan, and the buildings in which such pro-
grams, projects, and activities are operated, will
meet standards prescribed by the Secretary in
regulations and all applicable Federal and State
accessibility standards, including accessibility
requirements of the Americans with Disabilities
Act of 1990 (42 U.S.C. 12101 et seq.), section
508 of the Rehabilitation Act of 1973 (29
U.S.C. 794d), and the Fair Housing Act (42
U.S.C. 3601 et seq.).
(G) INDIVIDUALIZED SERVICES.—The plan
shall provide assurances that any direct services
provided to individuals with developmental dis-
abilities and funded under the plan will be pro-
vided in an individualized manner, consistent
with the unique strengths, resources, priorities,
concerns, abilities, and capabilities of such indi-
vidual.
(H) HUMAN RIGHTS.—The plan shall pro-
vide assurances that the human rights of the
individuals with developmental disabilities (es-
pecially individuals without familial protection)
who are receiving services under programs as-
sisted under this subtitle will be protected con-
sistent with section 109 (relating to rights of
individuals with developmental disabilities).
(I) MINORITY PARTICIPATION.—The plan
shall provide assurances that the State has
taken affirmative steps to assure that participa-
tion in programs funded under this subtitle is
geographically representative of the State, and
reflects the diversity of the State with respect
to race and ethnicity.
(J) EMPLOYEE PROTECTIONS.—The plan
shall provide assurances that fair and equitable
arrangements (as determined by the Secretary
after consultation with the Secretary of Labor)
will be provided to protect the interests of em-
ployees affected by actions taken under the plan
to provide community living activities, including
arrangements designed to preserve employee
rights and benefits and provide training and re-
training of such employees where necessary,
and arrangements under which maximum ef-
forts will be made to guarantee the employment
of such employees.
(K) STAFF ASSIGNMENTS.—The plan shall
provide assurances that the staff and other per-
sonnel of the Council, while working for the
Council, will be responsible solely for assisting
the Council in carrying out the duties of the
(d) PUBLIC INPUT AND REVIEW, SUBMISSION, AND
APPROVAL.—
(1) PUBLIC
INPUT
AND
REVIEW.—The plan
shall be based on public input. The Council shall
make the plan available for public review and com-
ment, after providing appropriate and sufficient no-
tice in accessible formats of the opportunity for such
review and comment. The Council shall revise the
plan to take into account and respond to significant
comments.
(2) CONSULTATION
WITH
THE
DESIGNATED
STATE AGENCY.—Before the plan is submitted to
the Secretary, the Council shall consult with the des-
ignated State agency to ensure that the State plan
is consistent with State law and to obtain appro-
priate State plan assurances.
(3) PLAN APPROVAL.—The Secretary shall ap-
prove any State plan and, as appropriate, amend-
ments of such plan that comply with the provisions
of subsections (a), (b), and (c) and this subsection.
The Secretary may take final action to disapprove a
State plan after providing reasonable notice and an
opportunity for a hearing to the State.
SEC. 125. STATE COUNCILS ON DEVELOPMENTAL DISABIL-
ITIES AND DESIGNATED STATE AGENCIES.
(a) IN GENERAL.—Each State that receives assist-
ance under this subtitle shall establish and maintain a
Council to undertake advocacy, capacity building, and sys-
temic change activities (consistent with subsections (b)
and (c) of section 101) that contribute to a coordinated,
consumer- and family-centered, consumer- and family-di-
rected, comprehensive system of community services, indi-
vidualized supports, and other forms of assistance that
contribute to the achievement of the purpose of this sub-
title. The Council shall have the authority to fulfill the
responsibilities described in subsection (c).
(b) COUNCIL MEMBERSHIP.—
(1) COUNCIL APPOINTMENTS.—
(A) IN
GENERAL.—The members of the
Council of a State shall be appointed by the
Governor of the State from among the residents
of that State.
(B) RECOMMENDATIONS.—The Governor
shall select members of the Council, at the dis-
cretion of the Governor, after soliciting rec-
ommendations from organizations representing
a broad range of individuals with developmental
disabilities and individuals interested in individ-
uals with developmental disabilities, including
the non-State agency members of the Council.
The Council may, at the initiative of the Coun-
cil, or on the request of the Governor, coordi-
nate Council and public input to the Governor
regarding all recommendations.
(C) REPRESENTATION.—The membership
of the Council shall be geographically represent-
ative of the State and reflect the diversity of
the State with respect to race and ethnicity.
(2) MEMBERSHIP
ROTATION.—The Governor
shall make appropriate provisions to rotate the mem-
bership of the Council. Such provisions shall allow
members to continue to serve on the Council until
such members’ successors are appointed. The Coun-
cil shall notify the Governor regarding membership
requirements of the Council, and shall notify the
Governor when vacancies on the Council remain un-
filled for a significant period of time.
(3) REPRESENTATION
OF
INDIVIDUALS
WITH
DEVELOPMENTAL DISABILITIES.—Not less than 60
percent of the membership of each Council shall con-
sist of individuals who are—
(A)(i) individuals with developmental dis-
abilities;
(ii) parents or guardians of children with
developmental disabilities; or
(iii) immediate relatives or guardians of
adults with mentally impairing developmental
disabilities who cannot advocate for themselves;
and
(B) not employees of a State agency that
receives funds or provides services under this
subtitle, and who are not managing employees
(as defined in section 1126(b) of the Social Se-
curity Act (42 U.S.C. 1320a–5(b)) of any other
entity that receives funds or provides services
under this subtitle.
(4) REPRESENTATION OF AGENCIES AND ORGA-
NIZATIONS.—
(A) IN
GENERAL.—Each Council shall
include—
(i) representatives of relevant State
entities, including—
(I) State entities that administer
funds provided under Federal laws re-
lated to individuals with disabilities,
including the Rehabilitation Act of
1973 (29 U.S.C. 701 et seq.), the In-
dividuals with Disabilities Education
Act (20 U.S.C. 1400 et seq.), the
Older Americans Act of 1965 (42
U.S.C. 3001 et seq.), and titles V and
XIX of the Social Security Act (42
U.S.C. 701 et seq. and 1396 et seq.);
(II) Centers in the State; and
(III) the State protection and ad-
vocacy system; and
(ii) representatives, at all times,
of local and nongovernmental agen-
cies, and private nonprofit groups
concerned with services for individuals
with developmental disabilities in the
State in which such agencies and
groups are located.
(B) AUTHORITY AND LIMITATIONS.—The
representatives described in subparagraph (A)
shall—
(i) have sufficient authority to engage
in policy planning and implementation on
behalf of the department, agency, or pro-
gram such representatives represent; and
(ii) recuse themselves from any dis-
cussion of grants or contracts for which
such representatives’ departments, agen-
cies, or programs are grantees, contrac-
tors, or applicants and comply with the
conflict of interest assurance requirement
under section 124(c)(5)(D).
(5) COMPOSITION OF MEMBERSHIP WITH DE-
VELOPMENTAL DISABILITIES.—Of the members of
the Council described in paragraph (3)—
(A) 1⁄3 shall be individuals with develop-
mental disabilities described in paragraph
(3)(A)(i);
(B) 1⁄3 shall be parents or guardians of
children with developmental disabilities de-
scribed in paragraph (3)(A)(ii), or immediate
relatives or guardians of adults with develop-
mental disabilities described in paragraph
(3)(A)(iii); and
(C) 1⁄3 shall be a combination of individ-
uals described in paragraph (3)(A).
(6) INSTITUTIONALIZED INDIVIDUALS.—
(A) IN GENERAL.—Of the members of the
Council described in paragraph (5), at least 1
shall be an immediate relative or guardian of an
individual with a developmental disability who
resides or previously resided in an institution or
shall be an individual with a developmental dis-
ability who resides or previously resided in an
institution.
(B) LIMITATION.—Subparagraph (A) shall
not apply with respect to a State if such an in-
dividual does not reside in that State.
(c) COUNCIL RESPONSIBILITIES.—
(1) IN GENERAL.—A Council, through Council
members, staff, consultants, contractors, or sub-
grantees, shall have the responsibilities described in
paragraphs (2) through (10).
(2) ADVOCACY, CAPACITY BUILDING, AND SYS-
TEMIC
CHANGE
ACTIVITIES.—The Council shall
serve as an advocate for individuals with develop-
mental disabilities and conduct or support programs,
projects, and activities that carry out the purpose of
this subtitle.
(3) EXAMINATION OF GOALS.—At the end of
each grant year, each Council shall—
(A) determine the extent to which each
goal of the Council was achieved for that year;
(B) determine to the extent that each goal
was not achieved, the factors that impeded the
achievement;
(C) determine needs that require amend-
ment of the 5-year strategic State plan required
under section 124;
(D) separately determine the information
on the self-advocacy goal described in section
124(c)(4)(A)(ii); and
(E) determine customer satisfaction with
Council supported or conducted activities.
(4) STATE PLAN DEVELOPMENT.—The Council
shall develop the State plan and submit the State
plan to the Secretary after consultation with the des-
ignated State agency under the State plan. Such
consultation shall be solely for the purposes of ob-
taining State assurances and ensuring consistency of
the plan with State law.
(5) STATE PLAN IMPLEMENTATION.—
(A) IN GENERAL.—The Council shall im-
plement the State plan by conducting and sup-
porting advocacy, capacity building, and sys-
temic change activities such as those described
in subparagraphs (B) through (L).
(B) OUTREACH.—The Council may sup-
port and conduct outreach activities to identify
individuals with developmental disabilities and
their families who otherwise might not come to
the attention of the Council and assist and en-
able the individuals and families to obtain serv-
ices, individualized supports, and other forms of
assistance, including access to special adapta-
tion of generic community services or special-
ized services.
(C) TRAINING.—The Council may support
and conduct training for persons who are indi-
viduals with developmental disabilities, their
families, and personnel (including professionals,
paraprofessionals, students, volunteers, and
other community members) to enable such per-
sons to obtain access to, or to provide, commu-
nity services, individualized supports, and other
forms of assistance, including special adapta-
tion of generic community services or special-
ized services for individuals with developmental
disabilities and their families. To the extent
that the Council supports or conducts training
activities under this subparagraph, such activi-
ties shall contribute to the achievement of the
purpose of this subtitle.
(D) TECHNICAL ASSISTANCE.—The Coun-
cil may support and conduct technical assist-
ance activities to assist public and private enti-
ties to contribute to the achievement of the pur-
pose of this subtitle.
(E) SUPPORTING AND EDUCATING COMMU-
NITIES.—The Council may support and conduct
activities to assist neighborhoods and commu-
nities to respond positively to individuals with
developmental disabilities and their families—
(i) by encouraging local networks to
provide informal and formal supports;
(ii) through education; and
(iii) by enabling neighborhoods and
communities to offer such individuals and
their families access to and use of services,
resources, and opportunities.
(F) INTERAGENCY
COLLABORATION
AND
COORDINATION.—The Council may support and
conduct activities to promote interagency col-
laboration and coordination to better serve, sup-
port, assist, or advocate for individuals with de-
velopmental disabilities and their families.
(G) COORDINATION WITH RELATED COUN-
CILS, 
COMMITTEES, 
AND
PROGRAMS.—The
Council may support and conduct activities to
enhance coordination of services with—
(i) other councils, entities, or commit-
tees, authorized by Federal or State law,
concerning individuals with disabilities
(such as the State interagency coordi-
nating council established under subtitle C
of the Individuals with Disabilities Edu-
cation Act (20 U.S.C. 1431 et seq.), the
State Rehabilitation Council and the State-
wide Independent Living Council estab-
lished under the Rehabilitation Act of
1973 (29 U.S.C. 701 et seq.), the State
mental health planning council established
under subtitle B of title XIX of the Public
Health Service Act (42 U.S.C. 300x–1 et
seq.), and the activities authorized under
section 101 or 102 of the Assistive Tech-
nology Act of 1998 (29 U.S.C. 3011,
3012), and entities carrying out other
similar councils, entities, or committees);
(ii) parent training and information
centers under part D of the Individuals
with Disabilities Education Act (20 U.S.C.
1451 et seq.) and other entities carrying
out federally funded projects that assist
parents of children with disabilities; and
(iii) other groups interested in advo-
cacy, capacity building, and systemic
change activities to benefit individuals with
disabilities.
(H) BARRIER ELIMINATION, SYSTEMS DE-
SIGN AND REDESIGN.—The Council may sup-
port and conduct activities to eliminate barriers
to assess and use of community services by in-
dividuals with developmental disabilities, en-
hance systems design and redesign, and en-
hance citizen participation to address issues
identified in the State plan.
(I) COALITION
DEVELOPMENT
AND
CIT-
IZEN PARTICIPATION.—The Council may sup-
port and conduct activities to educate the public
about the capabilities, preferences, and needs of
individuals with developmental disabilities and
their families and to develop and support coali-
tions that support the policy agenda of the
Council, including training in self-advocacy,
education of policymakers, and citizen leader-
ship skills.
(J) 
INFORMING
POLICYMAKERS.—The
Council may support and conduct activities to
provide information to policymakers by sup-
porting and conducting studies and analyses,
gathering information, and developing and dis-
seminating model policies and procedures, infor-
mation, approaches, strategies, findings, conclu-
sions, and recommendations. The Council may
provide the information directly to Federal,
State, and local policymakers, including Con-
gress, the Federal executive branch, the Gov-
ernors, State legislatures, and State agencies,
in order to increase the ability of such policy-
makers to offer opportunities and to enhance or
adapt generic services to meet the needs of, or
provide specialized services to, individuals with
developmental disabilities and their families.
(K) 
DEMONSTRATION
OF
NEW
AP-
PROACHES TO SERVICES AND SUPPORTS.—
(i) IN
GENERAL.—The Council may
support and conduct, on a time-limited
basis, activities to demonstrate new ap-
proaches to serving individuals with devel-
opmental disabilities that are a part of an
overall strategy for systemic change. The
strategy may involve the education of pol-
icymakers and the public about how to de-
liver effectively, to individuals with devel-
opmental disabilities and their families,
services, supports, and assistance that con-
tribute to the achievement of the purpose
of this subtitle.
(ii) 
SOURCES
OF
FUNDING.—The
Council may carry out this subparagraph
by supporting and conducting demonstra-
tion activities through sources of funding
other than funding provided under this
subtitle, and by assisting entities con-
ducting demonstration activities to develop
strategies for securing funding from other
sources.
(L) OTHER ACTIVITIES.—The Council may
support and conduct other advocacy, capacity
building, and systemic change activities to pro-
mote 
the 
development 
of 
a 
coordinated,
consumer- and family-centered, consumer- and
family-directed, comprehensive system of com-
munity services, individualized supports, and
other forms of assistance that contribute to the
achievement of the purpose of this subtitle.
(6) REVIEW OF DESIGNATED STATE AGENCY.—
The Council shall periodically review the designated
State agency and activities carried out under this
subtitle by the designated State agency and make
any recommendations for change to the Governor.
(7) REPORTS.—Beginning in fiscal year 2002,
the Council shall annually prepare and transmit to
the Secretary a report. Each report shall be in a
form prescribed by the Secretary by regulation
under section 104(b). Each report shall contain in-
formation about the progress made by the Council in
achieving the goals of the Council (as specified in
section 124(c)(4)), including—
(A) a description of the extent to which the
goals were achieved;
(B) a description of the strategies that
contributed to achieving the goals;
(C) to the extent to which the goals were
not achieved, a description of factors that im-
peded the achievement;
(D) separate information on the self-advo-
cacy goal described in section 124(c)(4)(A)(ii);
(E)(i) as appropriate, an update on the re-
sults of the comprehensive review and analysis
described in section 124(c)(3); and
(ii) information on consumer satisfaction
with Council supported or conducted activities;
(F)(i) a description of the adequacy of
health care and other services, supports, and
assistance that individuals with developmental
disabilities in Intermediate Care Facilities
(Mental Retardation) receive; and
(ii) a description of the adequacy of health
care and other services, supports, and assist-
ance that individuals with developmental dis-
abilities served through home and community-
based 
waivers 
(authorized 
under 
section
1915(c) of the Social Security Act (42 U.S.C.
1396n(c)) receive;
(G) an accounting of the manner in which
funds paid to the State under this subtitle for
a fiscal year were expended;
(H) a description of—
(i) resources made available to carry
out activities to assist individuals with de-
velopmental disabilities that are directly at-
tributable to Council actions; and
(ii) resources made available for such
activities that are undertaken by the Coun-
cil in collaboration with other entities; and
(I) a description of the method by which
the Council will widely disseminate the annual
report to affected constituencies and the general
public and will assure that the report is avail-
able in accessible formats.
(8) BUDGET.—Each Council shall prepare, ap-
prove, and implement a budget using amounts paid
to the State under this subtitle to fund and imple-
ment all programs, projects, and activities carried
out under this subtitle, including—
(A)(i) conducting such hearings and fo-
rums as the Council may determine to be nec-
essary to carry out the duties of the Council;
and
(ii) as determined in Council policy—
(I) reimbursing members of the Coun-
cil for reasonable and necessary expenses
(including expenses for child care and per-
sonal assistance services) for attending
Council meetings and performing Council
duties;
(II) paying a stipend to a member of
the Council, if such member is not em-
ployed or must forfeit wages from other
employment, to attend Council meetings
and perform other Council duties;
(III) supporting Council member and
staff travel to authorized training and
technical assistance activities including in-
service training and leadership develop-
ment activities; and
(IV) carrying out appropriate subcon-
tracting activities;
(B) hiring and maintaining such numbers
and types of staff (qualified by training and ex-
perience) and obtaining the services of such
professional, consulting, technical, and clerical
staff (qualified by training and experience),
consistent with State law, as the Council deter-
mines to be necessary to carry out the functions
of the Council under this subtitle, except that
such State shall not apply hiring freezes, reduc-
tions in force, prohibitions on travel, or other
policies to the staff of the Council, to the extent
that such policies would impact the staff or
functions funded with Federal funds, or would
prevent the Council from carrying out the func-
tions of the Council under this subtitle; and
(C) directing the expenditure of funds for
grants, contracts, interagency agreements that
are binding contracts, and other activities au-
thorized by the State plan approved under sec-
tion 124.
(9) STAFF
HIRING
AND
SUPERVISION.—The
Council shall, consistent with State law, recruit and
hire a Director of the Council, should the position of
Director become vacant, and supervise and annually
evaluate the Director. The Director shall hire, super-
vise, and annually evaluate the staff of the Council.
Council recruitment, hiring, and dismissal of staff
shall be conducted in a manner consistent with Fed-
eral and State nondiscrimination laws. Dismissal of
personnel shall be conducted in a manner consistent
with State law and personnel policies.
(10) STAFF ASSIGNMENTS.—The staff of the
Council, while working for the Council, shall be re-
sponsible solely for assisting the Council in carrying
out the duties of the Council under this subtitle and
shall not be assigned duties by the designated State
agency or any other agency or entity of the State.
(11) CONSTRUCTION.—Nothing in this title
shall be construed to authorize a Council to direct,
control, or exercise any policymaking authority or
administrative authority over any program assisted
under the Rehabilitation Act of 1973 (29 U.S.C.
701 et seq.) or the Individuals with Disabilities Edu-
cation Act (20 U.S.C. 1400 et seq.).
(d) DESIGNATED STATE AGENCY.—
(1) IN GENERAL.—Each State that receives as-
sistance under this subtitle shall designate a State
agency that shall, on behalf of the State, provide
support to the Council. After the date of enactment
of the Developmental Disabilities Assistance and Bill
of Rights Act Amendments of 1994 (Public Law
103–230), any designation of a State agency under
this paragraph shall be made in accordance with the
requirements of this subsection.
(2) DESIGNATION.—
(A) TYPE
OF
AGENCY.—Except as pro-
vided in this subsection, the designated State
agency shall be—
(i) the Council if such Council may be
the designated State agency under the laws
of the State;
(ii) a State agency that does not pro-
vide or pay for services for individuals with
developmental disabilities; or
(iii) a State office, including the im-
mediate office of the Governor of the State
or a State planning office.
(B) CONDITIONS FOR CONTINUATION OF
STATE SERVICE AGENCY DESIGNATION.—
(i) DESIGNATION
BEFORE
ENACT-
MENT.—If a State agency that provides or
pays for services for individuals with devel-
opmental disabilities was a designated
State agency for purposes of part B of the
Developmental Disabilities Assistance and
Bill of Rights Act on the date of enact-
ment of the Developmental Disabilities As-
sistance and Bill of Rights Act Amend-
ments of 1994, and the Governor of the
State (or the legislature, where appropriate
and in accordance with State law) deter-
mines prior to June 30, 1994, not to
change the designation of such agency,
such agency may continue to be a des-
ignated State agency for purposes of this
subtitle.
(ii) CRITERIA FOR CONTINUED DES-
IGNATION.—The determination, at the dis-
cretion of the Governor (or the legislature,
as the case may be), shall be made after—
(I) the Governor has considered
the comments and recommendations
of the general public and a majority
of the non-State agency members of
the Council with respect to the des-
ignation of such State agency; and
(II) the Governor (or the legisla-
ture, as the case may be) has made an
independent assessment that the des-
ignation of such agency will not inter-
fere with the budget, personnel, prior-
ities, or other action of the Council,
and the ability of the Council to serve
as an independent advocate for indi-
viduals with developmental disabilities.
(C) 
REVIEW
OF
DESIGNATION.—The
Council may request a review of and change in
the designation of the designated State agency
by the Governor (or the legislature, as the case
may be). The Council shall provide documenta-
tion concerning the reason the Council desires
a change to be made and make a recommenda-
tion to the Governor (or the legislature, as the
case may be) regarding a preferred designated
State agency.
(D) APPEAL OF DESIGNATION.—After the
review is completed under subparagraph (C), a
majority of the non-State agency members of
the Council may appeal to the Secretary for a
review of and change in the designation of the
designated State agency if the ability of the
Council to serve as an independent advocate is
not assured because of the actions or inactions
of the designated State agency.
(3) RESPONSIBILITIES.—
(A) IN GENERAL.—The designated State
agency shall, on behalf of the State, have the
responsibilities described in subparagraphs (B)
through (G).
(B) SUPPORT SERVICES.—The designated
State agency shall provide required assurances
and support services as requested by and nego-
tiated with the Council.
(C) FISCAL RESPONSIBILITIES.—The des-
ignated State agency shall—
(i) receive, account for, and disburse
funds under this subtitle based on the
State plan required in section 124; and
(ii) provide for such fiscal control and
fund accounting procedures as may be nec-
essary to assure the proper disbursement
of, and accounting for, funds paid to the
State under this subtitle.
(D) RECORDS, ACCESS, AND
FINANCIAL
REPORTS.—The designated State agency shall
keep and provide access to such records as the
Secretary and the Council may determine to be
necessary. The designated State agency, if
other than the Council, shall provide timely fi-
nancial reports at the request of the Council re-
garding the status of expenditures, obligations,
and liquidation by the agency or the Council,
and the use of the Federal and non-Federal
shares described in section 126, by the agency
or the Council.
(E) 
NON-FEDERAL
SHARE.—The 
des-
ignated State agency, if other than the Council,
shall provide the required non-Federal share de-
scribed in section 126(c).
(F) ASSURANCES.—The designated State
agency shall assist the Council in obtaining the
appropriate State plan assurances and in ensur-
ing that the plan is consistent with State law.
(G) MEMORANDUM OF UNDERSTANDING.—
On the request of the Council, the designated
State agency shall enter into a memorandum of
understanding with the Council delineating the
roles and responsibilities of the designated
State agency.
(4) USE OF FUNDS FOR DESIGNATED STATE
AGENCY RESPONSIBILITIES.—
(A) CONDITION FOR FEDERAL FUNDING.—
(i) IN GENERAL.—The Secretary shall
provide amounts to a State under section
124(c)(5)(B)(vi) for a fiscal year only if
the State expends an amount from State
sources for carrying out the responsibilities
of the designated State agency under para-
graph (3) for the fiscal year that is not
less than the total amount the State ex-
pended from such sources for carrying out
similar responsibilities for the previous fis-
cal year.
(ii) EXCEPTION.—Clause (i) shall not
apply in a year in which the Council is the
designated State agency.
(B) SUPPORT
SERVICES
PROVIDED
BY
OTHER AGENCIES.—With the agreement of the
designated State agency, the Council may use
or contract with agencies other than the des-
ignated State agency to perform the functions
of the designated State agency.
SEC. 126. FEDERAL AND NON-FEDERAL SHARE.
(a) AGGREGATE COST.—
(1) IN GENERAL.—Except as provided in para-
graphs (2) and (3), the Federal share of the cost of
all projects in a State supported by an allotment to
the State under this subtitle may not be more than
75 percent of the aggregate necessary cost of such
projects, as determined by the Secretary.
(2) URBAN OR RURAL POVERTY AREAS.—In the
case of projects whose activities or products target
individuals with developmental disabilities who live
in urban or rural poverty areas, as determined by
the Secretary, the Federal share of the cost of all
such projects may not be more than 90 percent of
the aggregate necessary cost of such projects, as de-
termined by the Secretary.
(3) STATE PLAN ACTIVITIES.—In the case of
projects undertaken by the Council or Council staff
to implement State plan activities, the Federal share
of the cost of all such projects may be not more than
100 percent of the aggregate necessary cost of such
activities.
(b) NONDUPLICATION.—In determining the amount
of any State’s Federal share of the cost of such projects
incurred by such State under a State plan approved under
section 124, the Secretary shall not consider—
(1) any portion of such cost that is financed by
Federal funds provided under any provision of law
other than section 122; and
(2) the amount of any non-Federal funds re-
quired to be expended as a condition of receipt of
the Federal funds described in paragraph (1).
(c) NON-FEDERAL SHARE.—
(1) IN-KIND
CONTRIBUTIONS.—The non-Fed-
eral share of the cost of any project supported by an
allotment under this subtitle may be provided in
cash or in kind, fairly evaluated, including plant,
equipment, or services.
(2) CONTRIBUTIONS
OF
POLITICAL
SUBDIVI-
SIONS AND PUBLIC OR PRIVATE ENTITIES.—
(A) 
IN
GENERAL.—Contributions 
to
projects by a political subdivision of a State or
by a public or private entity under an agree-
ment with the State shall, subject to such limi-
tations and conditions as the Secretary may by
regulation prescribe under section 104(b), be
considered to be contributions by such State, in
the case of a project supported under this sub-
title.
(B) STATE
CONTRIBUTIONS.—State con-
tributions, including contributions by the des-
ignated State agency to provide support services
to the Council pursuant to section 125(d)(4),
may be counted as part of such State’s non-
Federal share of the cost of projects supported
under this subtitle.
(3) 
VARIATIONS
OF
THE
NON-FEDERAL
SHARE.—The non-Federal share required of each re-
cipient of a grant from a Council under this subtitle
may vary.
SEC. 127. WITHHOLDING OF PAYMENTS FOR PLANNING, AD-
MINISTRATION, AND SERVICES.
Whenever the Secretary, after providing reasonable
notice and an opportunity for a hearing to the Council
and the designated State agency, finds that—
(1) the Council or agency has failed to comply
substantially with any of the provisions required by
section 124 to be included in the State plan, particu-
larly provisions required by paragraphs (4)(A) and
(5)(B)(vii) of section 124(c), or with any of the pro-
visions required by section 125(b)(3); or
(2) the Council or agency has failed to comply
substantially with any regulations of the Secretary
that are applicable to this subtitle,
the Secretary shall notify such Council and agency that
the Secretary will not make further payments to the State
under section 122 (or, in the discretion of the Secretary,
that further payments to the State under section 122 for
activities for which there is such failure), until the Sec-
retary is satisfied that there will no longer be such failure.
Until the Secretary is so satisfied, the Secretary shall
make no further payments to the State under section 122,
or shall limit further payments under section 122 to such
State to activities for which there is no such failure.
SEC. 128. APPEALS BY STATES.
(a) APPEAL.—If any State is dissatisfied with the
Secretary’s action under section 124(d)(3) or 127, such
State may appeal to the United States court of appeals
for the circuit in which such State is located, by filing a
petition with such court not later than 60 days after such
action.
(b) FILING.—The clerk of the court shall transmit
promptly a copy of the petition to the Secretary, or any
officer designated by the Secretary for that purpose. The
Secretary shall file promptly with the court the record of
the proceedings on which the Secretary based the action,
as provided in section 2112 of title 28, United States
Code.
(c) JURISDICTION.—Upon the filing of the petition,
the court shall have jurisdiction to affirm the action of
the Secretary or to set the action aside, in whole or in
part, temporarily or permanently. Until the filing of the
record, the Secretary may modify or set aside the order
of the Secretary relating to the action.
(d) FINDINGS AND REMAND.—The findings of the
Secretary about the facts, if supported by substantial evi-
dence, shall be conclusive, but the court, for good cause
shown, may remand the case involved to the Secretary for
further proceedings to take further evidence. On remand,
the Secretary may make new or modified findings of fact
and may modify the previous action of the Secretary, and
shall file with the court the record of the further pro-
ceedings. Such new or modified findings of fact shall like-
wise be conclusive if supported by substantial evidence.
(e) FINALITY.—The judgment of the court affirming
or setting aside, in whole or in part, any action of the
Secretary shall be final, subject to review by the Supreme
Court of the United States upon certiorari or certification
as provided in section 1254 of title 28, United States
Code.
(f) EFFECT.—The commencement of proceedings
under this section shall not, unless so specifically ordered
by a court, operate as a stay of the Secretary’s action.
SEC. 129. AUTHORIZATION OF APPROPRIATIONS.
(a) FUNDING FOR STATE ALLOTMENTS.—Except as
described in subsection (b), there are authorized to be ap-
propriated for allotments under section 122 $76,000,000
for fiscal year 2001 and such sums as may be necessary
for each of fiscal years 2002 through 2007.
(b) RESERVATION FOR TECHNICAL ASSISTANCE.—
(1) LOWER APPROPRIATION YEARS.—For any
fiscal year for which the amount appropriated under
subsection (a) is less than $76,000,000, the Sec-
retary shall reserve funds in accordance with section
163(c) to provide technical assistance to entities
funded under this subtitle.
(2) HIGHER APPROPRIATION YEARS.—For any
fiscal year for which the amount appropriated under
subsection (a) is not less than $76,000,000, the Sec-
retary shall reserve not less than $300,000 and not
more than 1 percent of the amount appropriated
under subsection (a) to provide technical assistance
to entities funded under this subtitle.
Subtitle C—Protection and
Advocacy of Individual Rights
SEC. 141. PURPOSE.
The purpose of this subtitle is to provide for allot-
ments to support a protection and advocacy system (re-
ferred to in this subtitle as a ‘‘system’’) in each State to
protect the legal and human rights of individuals with de-
velopmental disabilities in accordance with this subtitle.
SEC. 142. ALLOTMENTS AND PAYMENTS.
(a) ALLOTMENTS.—
(1) IN GENERAL.—To assist States in meeting
the requirements of section 143(a), the Secretary
shall allot to the States the amounts appropriated
under section 145 and not reserved under paragraph
(6). Allotments and reallotments of such sums shall
be made on the same basis as the allotments and re-
allotments are made under subsections (a)(1)(A) and
(e) of section 122, except as provided in paragraph
(2).
(2) MINIMUM
ALLOTMENTS.—In any case in
which—
(A) the total amount appropriated under
section 145 for a fiscal year is not less than
$20,000,000, the allotment under paragraph
(1) for such fiscal year—
(i) to each of American Samoa,
Guam, the United States Virgin Islands,
and the Commonwealth of the Northern
Mariana Islands may not be less than
$107,000; and
(ii) to any State not described in
clause (i) may not be less than $200,000;
or
(B) the total amount appropriated under
section 145 for a fiscal year is less than
$20,000,000, the allotment under paragraph
(1) for such fiscal year—
(i) to each of American Samoa,
Guam, the United States Virgin Islands,
and the Commonwealth of the Northern
Mariana Islands may not be less than
$80,000; and
(ii) to any State not described in
clause (i) may not be less than $150,000.
(3) REDUCTION
OF
ALLOTMENT.—Notwith-
standing paragraphs (1) and (2), if the aggregate of
the amounts to be allotted to the States pursuant to
such paragraphs for any fiscal year exceeds the total
amount appropriated for such allotments under sec-
tion 145 for such fiscal year, the amount to be allot-
ted to each State for such fiscal year shall be pro-
portionately reduced.
(4) INCREASE IN ALLOTMENTS.—In any year in
which the total amount appropriated under section
145 for a fiscal year exceeds the total amount appro-
priated under such section (or a corresponding pro-
vision) for the preceding fiscal year by a percentage
greater than the most recent percentage change in
the Consumer Price Index published by the Sec-
retary of Labor under section 100(c)(1) of the Reha-
bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the
percentage change indicates an increase), the Sec-
retary shall increase each of the minimum allot-
ments described in subparagraphs (A) and (B) of
paragraph (2). The Secretary shall increase each
minimum allotment by an amount that bears the
same ratio to the amount of such minimum allot-
ment (including any increases in such minimum al-
lotment under this paragraph (or a corresponding
provision) for prior fiscal years) as the amount that
is equal to the difference between—
(A) the total amount appropriated under
section 145 for the fiscal year for which the in-
crease in the minimum allotment is being made;
minus
(B) the total amount appropriated under
section 145 (or a corresponding provision) for
the immediately preceding fiscal year,
bears to the total amount appropriated under section
145 (or a corresponding provision) for such pre-
ceding fiscal year.
(5) MONITORING THE ADMINISTRATION OF THE
SYSTEM.—In a State in which the system is housed
in a State agency, the State may use not more than
5 percent of any allotment under this subsection for
the costs of monitoring the administration of the
system required under section 143(a).
(6) TECHNICAL ASSISTANCE AND AMERICAN IN-
DIAN CONSORTIUM.—In any case in which the total
amount appropriated under section 145 for a fiscal
year is more than $24,500,000, the Secretary
shall—
(A) use not more than 2 percent of the
amount appropriated to provide technical assist-
ance to eligible systems with respect to activi-
ties carried out under this subtitle (consistent
with requests by such systems for such assist-
ance for the year); and
(B) provide a grant in accordance with sec-
tion 143(b), and in an amount described in
100
paragraph (2)(A)(i), to an American Indian
consortium to provide protection and advocacy
services.
(b) PAYMENT TO SYSTEMS.—Notwithstanding any
other provision of law, the Secretary shall pay directly to
any system in a State that complies with the provisions
of this subtitle the amount of the allotment made for the
State under this section, unless the system specifies other-
wise.
(c) UNOBLIGATED FUNDS.—Any amount paid to a
system under this subtitle for a fiscal year and remaining
unobligated at the end of such year shall remain available
to such system for the next fiscal year, for the purposes
for which such amount was paid.
SEC. 143. SYSTEM REQUIRED.
(a) SYSTEM REQUIRED.—In order for a State to re-
ceive 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
101
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 atten-
tion to members of ethnic and racial mi-
nority groups; and
(ii) provide information on and refer-
ral to programs and services addressing
the needs of individuals with developmental
disabilities;
(B) have the authority to investigate inci-
dents 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;
(C) on an annual basis, develop, submit to
the Secretary, and take action with regard to
goals (each of which is related to 1 or more
areas of emphasis) and priorities, developed
through data driven strategic planning, for the
system’s activities;
(D) on an annual basis, provide to the
public, including individuals with developmental
disabilities attributable to either physical im-
103
Technology Act of 1998 (29 U.S.C. 3011,
3012);
(E) establish a grievance procedure for cli-
ents or prospective clients of the system to en-
sure that individuals with developmental disabil-
ities have full access to services of the system;
(F) not be administered by the State
Council on Developmental Disabilities;
(G) be independent of any agency that pro-
vides treatment, services, or habilitation to indi-
viduals 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 develop-
mental disability who is a client of the sys-
tem if such individual, or the legal guard-
ian, conservator, or other legal representa-
tive of such individual, has authorized the
system to have such access;
(ii) any individual with a develop-
mental disability, in a situation in which—
104
(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 re-
ceived by the system about the indi-
vidual with regard to the status or
treatment of the individual or, as a
result of monitoring or other activi-
ties, there is probable cause to believe
that such individual has been subject
to abuse or neglect; and
(iii) any individual with a develop-
mental disability, in a situation in which—
(I) the individual has a legal
guardian, conservator, or other legal
representative;
(II) a complaint has been re-
ceived by the system about the indi-
vidual with regard to the status or
105
treatment of the individual or, as a
result of monitoring or other activi-
ties, 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 as-
sistance to such representative to re-
solve the situation; and
(V) such representative has failed
or refused to act on behalf of the indi-
vidual;
(J)(i) have access to the records of individ-
uals described in subparagraphs (B) and (I),
and other records that are relevant to con-
ducting 
an 
investigation, 
under 
the 
cir-
cumstances described in those subparagraphs,
not later than 3 business days after the system
makes a written request for the records in-
volved; and
(ii) have immediate access, not later than
24 hours after the system makes such a re-
106
quest, to the records without consent from an-
other 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 indi-
vidual with a developmental disability;
(K) hire and maintain sufficient numbers
and types of staff (qualified by training and ex-
perience) to carry out such system’s functions,
except that the State involved shall not apply
hiring freezes, reductions in force, prohibitions
on travel, or other policies to the staff of the
system, to the extent that such policies would
impact the staff or functions of the system
funded with Federal funds or would prevent the
system from carrying out the functions of the
system under this subtitle;
(L) have the authority to educate policy-
makers; and
(M) provide assurances to the Secretary
that funds allotted to the State under section
107
142 will be used to supplement, and not sup-
plant, the non-Federal funds that would other-
wise be made available for the purposes for
which the allotted funds are provided;
(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) of the So-
cial Security Act (42 U.S.C. 1396a(a)(30)(C)),
of an Intermediate Care Facility (Mental Retar-
dation) 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; and
(4) the agency implementing the system shall
not be redesignated unless—
(A) there is good cause for the redesigna-
tion;
(B) the State has given the agency notice
of the intention to make such redesignation, in-
108
cluding notice regarding the good cause for
such redesignation, and given the agency an op-
portunity to respond to the assertion that good
cause has been shown;
(C) the State has given timely notice and
an opportunity for public comment in an acces-
sible format to individuals with developmental
disabilities or their representatives; and
(D) the system has an opportunity to ap-
peal the redesignation to the Secretary, on the
basis that the redesignation was not for good
cause.
(b) AMERICAN INDIAN CONSORTIUM.—Upon applica-
tion to the Secretary, an American Indian consortium es-
tablished to provide protection and advocacy services
under this subtitle, shall receive funding pursuant to sec-
tion 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 sys-
tems serving the same geographic area. The tribal council
that designates the consortium shall carry out the respon-
sibilities 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—
109
(1) a report prepared or received by any staff
at any location at which services, supports, or other
assistance is provided to individuals with develop-
mental disabilities;
(2) a report prepared by an agency or staff per-
son 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.
SEC. 144. ADMINISTRATION.
(a) GOVERNING BOARD.—In a State in which the
system described in section 143 is organized as a private
nonprofit entity with a multimember governing board, or
a public system with a multimember governing board, such
governing board shall be selected according to the policies
and procedures of the system, except that—
(1)(A) the governing board shall be composed
of members who broadly represent or are knowledge-
able about the needs of the individuals served by the
system;
(B) a majority of the members of the board
shall be—
(i) individuals with disabilities, including
individuals with developmental disabilities, who
110
are eligible for services, or have received or are
receiving services through the system; or
(ii) parents, family members, guardians,
advocates, or authorized representatives of indi-
viduals referred to in clause (i); and
(C) the board may include a representative of
the State Council on Developmental Disabilities, the
Centers in the State, and the self-advocacy organiza-
tion described in section 124(c)(4)(A)(ii)(I);
(2) not more than 1⁄3 of the members of the
governing board may be appointed by the chief exec-
utive officer of the State involved, in the case of any
State in which such officer has the authority to ap-
point members of the board;
(3) the membership of the governing board
shall be subject to term limits set by the system to
ensure rotating membership;
(4) any vacancy in the board shall be filled not
later than 60 days after the date on which the va-
cancy occurs; and
(5) in a State in which the system is organized
as a public system without a multimember governing
or advisory board, the system shall establish an advi-
sory council—
111
(A) that shall advise the system on policies
and priorities to be carried out in protecting
and advocating the rights of individuals with
developmental disabilities; and
(B) on which a majority of the members
shall be—
(i) individuals with developmental dis-
abilities who are eligible for services, or
have received or are receiving services,
through the system; or
(ii) parents, family members, guard-
ians, advocates, or authorized representa-
tives of individuals referred to in clause (i).
(b) LEGAL ACTION.—
(1) IN GENERAL.—Nothing in this title shall
preclude a system from bringing a suit on behalf of
individuals with developmental disabilities against a
State, or an agency or instrumentality of a State.
(2) USE OF AMOUNTS FROM JUDGMENT.—An
amount received pursuant to a suit described in
paragraph (1) through a court judgment may only
be used by the system to further the purpose of this
subtitle and shall not be used to augment payments
to legal contractors or to award personal bonuses.
112
(3) LIMITATION.—The system shall use assist-
ance provided under this subtitle in a manner con-
sistent with section 5 of the Assisted Suicide Fund-
ing Restriction Act of 1997 (42 U.S.C. 14404).
(c) DISCLOSURE OF INFORMATION.—For purposes of
any periodic audit, report, or evaluation required under
this subtitle, the Secretary shall not require an entity car-
rying out a program to disclose the identity of, or any
other personally identifiable information related to, any in-
dividual requesting assistance under such program.
(d) PUBLIC NOTICE
OF FEDERAL ONSITE RE-
VIEW.—The Secretary shall provide advance public notice
of any Federal programmatic or administrative onsite re-
view of a system conducted under this subtitle and solicit
public comment on the system through such notice. The
Secretary shall prepare an onsite visit report containing
the results of such review, which shall be distributed to
the Governor of the State and to other interested public
and private parties. The comments received in response
to the public comment solicitation notice shall be included
in the onsite visit report.
(e) REPORTS.—Beginning in fiscal year 2002, each
system established in a State pursuant to this subtitle
shall annually prepare and transmit to the Secretary a re-
port that describes the activities, accomplishments, and
113
expenditures of the system during the preceding fiscal
year, including a description of the system’s goals, the ex-
tent to which the goals were achieved, barriers to their
achievement, the process used to obtain public input, the
nature of such input, and how such input was used.
SEC. 145. AUTHORIZATION OF APPROPRIATIONS.
For allotments under section 142, there are author-
ized to be appropriated $32,000,000 for fiscal year 2001
and such sums as may be necessary for each of fiscal years
2002 through 2007.
Subtitle D—National Network of
University Centers for Excel-
lence in Developmental Disabil-
ities Education, Research, and
Service
SEC. 151. GRANT AUTHORITY.
(a) NATIONAL NETWORK.—From appropriations au-
thorized under section 156(a)(1), the Secretary shall make
5-year grants to entities in each State designated as Uni-
versity Centers for Excellence in Developmental Disabil-
ities Education, Research, and Service to carry out activi-
ties described in section 153(a).
(b) NATIONAL TRAINING INITIATIVES.—From appro-
priations authorized under section 156(a)(1) and reserved
under section 156(a)(2), the Secretary shall make grants
114
to Centers to carry out activities described in section
153(b).
(c) TECHNICAL ASSISTANCE.—From appropriations
authorized under section 156(a)(1) and reserved under
section 156(a)(3) (or from funds reserved under section
163, as appropriate), the Secretary shall enter into 1 or
more cooperative agreements or contracts for the purpose
of providing technical assistance described in section
153(c).
SEC. 152. GRANT AWARDS.
(a) EXISTING CENTERS.—
(1) IN GENERAL.—In awarding and distributing
grant funds under section 151(a) for a fiscal year,
the Secretary, subject to the availability of appro-
priations and the condition specified in subsection
(d), shall award and distribute grant funds in equal
amounts of $500,000 (adjusted in accordance with
subsection (b)), to each Center that existed during
the preceding fiscal year and that meets the require-
ments of this subtitle, prior to making grants under
subsection (c) or (d).
(2) REDUCTION OF AWARD.—Notwithstanding
paragraph (1), if the aggregate of the funds to be
awarded to the Centers pursuant to paragraph (1)
for any fiscal year exceeds the total amount appro-
115
priated under section 156 for such fiscal year, the
amount to be awarded to each Center for such fiscal
year shall be proportionately reduced.
(b) ADJUSTMENTS.—Subject to the availability of ap-
propriations, for any fiscal year following a year in which
each Center described in subsection (a) received a grant
award of not less than $500,000 under subsection (a) (ad-
justed in accordance with this subsection), the Secretary
shall adjust the awards to take into account the most re-
cent percentage change in the Consumer Price Index pub-
lished by the Secretary of Labor under section 100(c)(1)
of the Rehabilitation Act of 1973 (29 U.S.C. 720(c)(1))
(if the percentage change indicates an increase), prior to
making grants under subsection (c) or (d).
(c) NATIONAL TRAINING INITIATIVES ON CRITICAL
AND EMERGING NEEDS.—Subject to the availability of ap-
propriations, for any fiscal year in which each Center de-
scribed in subsection (a) receives a grant award of not less
than $500,000, under subsection (a) (adjusted in accord-
ance with subsection (b)), after making the grant awards,
the Secretary shall make grants under section 151(b) to
Centers to pay for the Federal share of the cost of training
initiatives related to the unmet needs of individuals with
developmental disabilities and their families, as described
in section 153(b).
116
(d) ADDITIONAL GRANTS.—For any fiscal year in
which each Center described in subsection (a) receives a
grant award of not less than $500,000 under subsection
(a) (adjusted in accordance with subsection (b)), after
making the grant awards, the Secretary may make grants
under section 151(a) for activities described in section
153(a) to additional Centers, or additional grants to Cen-
ters, for States or populations that are unserved or under-
served by Centers due to such factors as—
(1) population;
(2) a high concentration of rural or urban
areas; or
(3) a high concentration of unserved or under-
served populations.
SEC. 153. PURPOSE AND SCOPE OF ACTIVITIES.
(a) NATIONAL NETWORK OF UNIVERSITY CENTERS
FOR EXCELLENCE
IN DEVELOPMENTAL DISABILITIES
EDUCATION, RESEARCH, AND SERVICE.—
(1) IN GENERAL.—In order to provide leader-
ship in, advise Federal, State, and community pol-
icymakers about, and promote opportunities for indi-
viduals with developmental disabilities to exercise
self-determination, be independent, be productive,
and be integrated and included in all facets of com-
munity life, the Secretary shall award grants to eli-
117
gible entities designated as Centers in each State to
pay for the Federal share of the cost of the adminis-
tration and operation of the Centers. The Centers
shall be interdisciplinary education, research, and
public service units of universities (as defined by the
Secretary) or public or not-for-profit entities associ-
ated with universities that engage in core functions,
described in paragraph (2), addressing, directly or
indirectly, 1 or more of the areas of emphasis.
(2) CORE FUNCTIONS.—The core functions re-
ferred to in paragraph (1) shall include the fol-
lowing:
(A) Provision of interdisciplinary pre-serv-
ice preparation and continuing education of stu-
dents and fellows, which may include the prepa-
ration and continuing education of leadership,
direct service, clinical, or other personnel to
strengthen and increase the capacity of States
and communities to achieve the purpose of this
title.
(B) Provision of community services—
(i) that provide training or technical
assistance for individuals with develop-
mental disabilities, their families, profes-
sionals, paraprofessionals, policymakers,
118
students, and other members of the com-
munity; and
(ii) that may provide services, sup-
ports, and assistance for the persons de-
scribed in clause (i) through demonstration
and model activities.
(C) Conduct of research, which may in-
clude basic or applied research, evaluation, and
the analysis of public policy in areas that affect
or could affect, either positively or negatively,
individuals with developmental disabilities and
their families.
(D) Dissemination of information related
to activities undertaken to address the purpose
of this title, especially dissemination of informa-
tion that demonstrates that the network author-
ized under this subtitle is a national and inter-
national resource that includes specific sub-
stantive areas of expertise that may be accessed
and applied in diverse settings and cir-
cumstances.
(b) NATIONAL TRAINING INITIATIVES ON CRITICAL
AND EMERGING NEEDS.—
(1) SUPPLEMENTAL GRANTS.—After consulta-
tion with relevant, informed sources, including indi-
119
viduals with developmental disabilities and their
families, the Secretary shall award, under section
151(b), supplemental grants to Centers to pay for
the Federal share of the cost of training initiatives
related to the unmet needs of individuals with devel-
opmental disabilities and their families. The Sec-
retary shall make the grants on a competitive basis,
and for periods of not more than 5 years.
(2) ESTABLISHMENT OF CONSULTATION PROC-
ESS BY THE SECRETARY.—Not later than 1 year
after the date of enactment of this Act, the Sec-
retary shall establish a consultation process that, on
an ongoing basis, allows the Secretary to identify
and address, through supplemental grants author-
ized under paragraph (1), training initiatives related
to the unmet needs of individuals with developmental
disabilities and their families.
(c) TECHNICAL ASSISTANCE.—In order to strengthen
and support the national network of Centers, the Sec-
retary may enter into 1 or more cooperative agreements
or contracts to—
(1) assist in national and international dissemi-
nation of specific information from multiple Centers
and, in appropriate cases, other entities whose work
120
affects the lives of individuals with developmental
disabilities;
(2) compile, analyze, and disseminate state-of-
the-art training, research, and demonstration results
policies, and practices from multiple Centers and, in
appropriate cases, other entities whose work affects
the lives of persons with developmental disabilities;
(3) convene experts from multiple Centers to
discuss and make recommendations with regard to
national emerging needs of individuals with develop-
mental disabilities;
(4)(A) develop portals that link users with every
Center’s website; and
(B) facilitate electronic information sharing
using state-of-the-art Internet technologies such as
real-time online discussions, multipoint video confer-
encing, and web-based audio/video broadcasts, on
emerging topics that impact individuals with disabil-
ities and their families;
(5) serve as a research-based resource for Fed-
eral and State policymakers on information con-
cerning and issues impacting individuals with devel-
opmental disabilities and entities that assist or serve
those individuals; or
121
(6) undertake any other functions that the Sec-
retary determines to be appropriate;
to promote the viability and use of the resources and ex-
pertise of the Centers nationally and internationally.
SEC. 154. APPLICATIONS.
(a) APPLICATIONS FOR CORE CENTER GRANTS.—
(1) IN GENERAL.—To be eligible to receive a
grant under section 151(a) for a Center, an entity
shall submit to the Secretary, and obtain approval
of, an application at such time, in such manner, and
containing such information, as the Secretary may
require.
(2) APPLICATION CONTENTS.—Each application
described in paragraph (1) shall describe a 5-year
plan, including a projected goal related to 1 or more
areas of emphasis for each of the core functions de-
scribed in section 153(a).
(3) ASSURANCES.—The application shall be ap-
proved by the Secretary only if the application con-
tains or is supported by reasonable assurances that
the entity designated as the Center will—
(A) meet regulatory standards as estab-
lished by the Secretary for Centers;
(B) address the projected goals, and carry
out goal-related activities, based on data driven
122
strategic planning and in a manner consistent
with the objectives of this subtitle, that—
(i) are developed in collaboration with
the consumer advisory committee estab-
lished pursuant to subparagraph (E);
(ii) are consistent with, and to the ex-
tent feasible complement and further, the
Council goals contained in the State plan
submitted under section 124 and the sys-
tem goals established under section 143;
and
(iii) will be reviewed and revised annu-
ally as necessary to address emerging
trends and needs;
(C) use the funds made available through
the grant to supplement, and not supplant, the
funds that would otherwise be made available
for activities described in section 153(a);
(D) protect, consistent with the policy
specified in section 101(c) (relating to rights of
individuals with developmental disabilities), the
legal and human rights of all individuals with
developmental disabilities (especially those indi-
viduals under State guardianship) who are in-
123
volved in activities carried out under programs
assisted under this subtitle;
(E) 
establish 
a 
consumer 
advisory
committee—
(i) of which a majority of the mem-
bers shall be individuals with develop-
mental disabilities and family members of
such individuals;
(ii) that is comprised of—
(I) 
individuals 
with 
develop-
mental disabilities and related disabil-
ities;
(II) family members of individ-
uals with developmental disabilities;
(III) a representative of the State
protection and advocacy system;
(IV) a representative of the State
Council on Developmental Disabilities;
(V) a representative of a self-ad-
vocacy organization described in sec-
tion 124(c)(4)(A)(ii)(I); and
(VI) representatives of organiza-
tions that may include parent training
and 
information 
centers 
assisted
under section 682 or 683 of the Indi-
124
viduals with Disabilities Education
Act (20 U.S.C. 1482, 1483), entities
carrying 
out 
activities 
authorized
under section 101 or 102 of the As-
sistive Technology Act of 1998 (29
U.S.C. 3011, 3012), relevant State
agencies, and other community groups
concerned with the welfare of individ-
uals with developmental disabilities
and their families;
(iii) that reflects the racial and ethnic
diversity of the State; and
(iv) that shall—
(I) consult with the Director of
the Center regarding the development
of the 5-year plan, and shall partici-
pate in an annual review of, and com-
ment on, the progress of the Center in
meeting the projected goals contained
in the plan, and shall make rec-
ommendations to the Director of the
Center regarding any proposed revi-
sions of the plan that might be nec-
essary; and
125
(II) meet as often as necessary to
carry out the role of the committee,
but at a minimum twice during each
grant year;
(F) to the extent possible, utilize the infra-
structure and resources obtained through funds
made available under the grant to leverage ad-
ditional public and private funds to successfully
achieve the projected goals developed in the 5-
year plan;
(G)(i) have a director with appropriate
academic credentials, demonstrated leadership,
expertise regarding developmental disabilities,
significant experience in managing grants and
contracts, and the ability to leverage public and
private funds; and
(ii) allocate adequate staff time to carry
out activities related to each of the core func-
tions described in section 153(a); and
(H) educate, and disseminate information
related to the purpose of this title to, the legis-
lature of the State in which the Center is lo-
cated, and to Members of Congress from such
State.
126
(b) SUPPLEMENTAL GRANT APPLICATIONS PER-
TAINING TO NATIONAL TRAINING INITIATIVES IN CRIT-
ICAL AND EMERGING NEEDS.—To be eligible to receive
a supplemental grant under section 151(b), a Center may
submit a supplemental application to the Secretary at such
time, in such manner, and containing such information as
the Secretary may require, pursuant to the terms and con-
ditions set by the Secretary consistent with section 153(b).
(c) PEER REVIEW.—
(1) IN GENERAL.—The Secretary shall require
that all applications submitted under this subtitle be
subject to technical and qualitative review by peer
review groups established under paragraph (2). The
Secretary may approve an application under this
subtitle only if such application has been rec-
ommended by a peer review group that has con-
ducted the peer review required under this para-
graph. In conducting the review, the group may con-
duct onsite visits or inspections of related activities
as necessary.
(2) 
ESTABLISHMENT
OF
PEER
REVIEW
GROUPS.—
(A) IN GENERAL.—The Secretary, acting
through the Commissioner of the Administra-
127
tion 
on 
Developmental 
Disabilities, 
may,
notwithstanding—
(i) the provisions of title 5, United
States Code, concerning appointments to
the competitive service; and
(ii) the provisions of chapter 51, and
subchapter III of chapter 53 of title 5,
United States Code, concerning classifica-
tion and General Schedule pay rates;
establish such peer review groups and appoint
and set the rates of pay of members of such
groups.
(B) 
COMPOSITION.—Each 
peer 
review
group shall include such individuals with dis-
abilities and parents, guardians, or advocates of
or for individuals with developmental disabil-
ities, as are necessary to carry out this sub-
section.
(3) WAIVERS
OF
APPROVAL.—The Secretary
may waive the provisions of paragraph (1) with re-
spect to review and approval of an application if the
Secretary determines that exceptional circumstances
warrant such a waiver.
(d) FEDERAL SHARE.—
128
(1) IN GENERAL.—The Federal share of the
cost of administration or operation of a Center, or
the cost of carrying out a training initiative, sup-
ported by a grant made under this subtitle may not
be more than 75 percent of the necessary cost of
such project, as determined by the Secretary.
(2) URBAN OR RURAL POVERTY AREAS.—In the
case of a project whose activities or products target
individuals with developmental disabilities who live
in an urban or rural poverty area, as determined by
the Secretary, the Federal share of the cost of the
project may not be more than 90 percent of the nec-
essary costs of the project, as determined by the
Secretary.
(3) GRANT EXPENDITURES.—For the purpose
of determining the Federal share with respect to the
project, expenditures on that project by a political
subdivision of a State or by a public or private entity
shall, subject to such limitations and conditions as
the Secretary may by regulation prescribe under sec-
tion 104(b), be considered to be expenditures made
by a Center under this subtitle.
(e) ANNUAL REPORT.—Each Center shall annually
prepare and transmit to the Secretary a report
containing—
129
(1) information on progress made in achieving
the projected goals of the Center for the previous
year, including—
(A) the extent to which the goals were
achieved;
(B) a description of the strategies that
contributed to achieving the goals;
(C) to the extent to which the goals were
not achieved, a description of factors that im-
peded the achievement; and
(D) an accounting of the manner in which
funds paid to the Center under this subtitle for
a fiscal year were expended;
(2) information on proposed revisions to the
goals; and
(3) a description of successful efforts to lever-
age funds, other than funds made available under
this subtitle, to pursue goals consistent with this
subtitle.
SEC. 155. DEFINITION.
In this subtitle, the term ‘‘State’’ means each of the
several States of the United States, the District of Colum-
bia, the Commonwealth of Puerto Rico, the United States
Virgin Islands, and Guam.
130
SEC. 156. AUTHORIZATION OF APPROPRIATIONS.
(a) AUTHORIZATION AND RESERVATIONS.—
(1) AUTHORIZATION.—There are authorized to
be appropriated to carry out this subtitle (other than
section 153(c)(4)) $30,000,000 for fiscal year 2001
and such sums as may be necessary for each of fis-
cal years 2002 through 2007.
(2) 
RESERVATION
FOR
TRAINING
INITIA-
TIVES.—From any amount appropriated for a fiscal
year under paragraph (1) and remaining after each
Center described in section 152(a) has received a
grant award of not less than $500,000, as described
in section 152, the Secretary shall reserve funds for
the training initiatives authorized under section
153(b).
(3) RESERVATION
FOR
TECHNICAL
ASSIST-
ANCE.—
(A) YEARS BEFORE APPROPRIATION TRIG-
GER.—For any covered year, the Secretary
shall reserve funds in accordance with section
163(c) to fund technical assistance activities
under section 153(c) (other than section
153(c)(4)).
(B) YEARS AFTER APPROPRIATION TRIG-
GER.—For any fiscal year that is not a covered
year, the Secretary shall reserve not less than
131
$300,000 and not more than 2 percent of the
amount appropriated under paragraph (1) to
fund technical assistance activities under sec-
tion 153(c) (other than section 153(c)(4)).
(C) COVERED YEAR.—In this paragraph,
the term ‘‘covered year’’ means a fiscal year
prior to the first fiscal year for which the
amount appropriated under paragraph (1) is
not less than $20,000,000.
(b) LIMITATION.—The Secretary may not use, for
peer review or other activities directly related to peer re-
view conducted under this subtitle—
(1) for fiscal year 2001, more than $300,000 of
the funds made available under subsection (a); and
(2) for any succeeding fiscal year, more than
the amount of funds used for the peer review and
related activities in fiscal year 2001, adjusted to
take into account the most recent percentage change
in the Consumer Price Index published by the Sec-
retary of Labor under section 100(c)(1) of the Reha-
bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the
percentage change indicates an increase).
132
Subtitle E—Projects of National
Significance
SEC. 161. PURPOSE.
The purpose of this subtitle is to provide grants, con-
tracts, or cooperative agreements for projects of national
significance that—
(1) create opportunities for individuals with de-
velopmental disabilities to directly and fully con-
tribute to, and participate in, all facets of commu-
nity life; and
(2) support the development of national and
State policies that reinforce and promote, with the
support of families, guardians, advocates, and com-
munities, of individuals with developmental disabil-
ities, the self-determination, independence, produc-
tivity, and integration and inclusion in all facets of
community life of such individuals through—
(A) family support activities;
(B) data collection and analysis;
(C) technical assistance to entities funded
under subtitles B and D, subject to the limita-
tions described in sections 129(b), 156(a)(3),
and 163(c); and
133
(D) other projects of sufficient size and
scope that hold promise to expand or improve
opportunities for such individuals, including—
(i) projects that provide technical as-
sistance for the development of information
and referral systems;
(ii) projects that provide technical as-
sistance to self-advocacy organizations of
individuals with developmental disabilities;
(iii) projects that provide education
for policymakers;
(iv) Federal interagency initiatives;
(v) projects that enhance the partici-
pation of racial and ethnic minorities in
public and private sector initiatives in de-
velopmental disabilities;
(vi) projects that provide aid to tran-
sition youth with developmental disabilities
from school to adult life, especially in find-
ing employment and postsecondary edu-
cation opportunities and in upgrading and
changing any assistive technology devices
that may be needed as a youth matures;
(vii) initiatives that address the devel-
opment of community quality assurance
134
systems and the training related to the de-
velopment, implementation, and evaluation
of such systems, including training of indi-
viduals with developmental disabilities and
their families;
(viii) initiatives that address the needs
of aging individuals with developmental
disabilities and aging caregivers of adults
with developmental disabilities in the com-
munity;
(ix) initiatives that create greater ac-
cess to and use of generic services systems,
community organizations, and associations,
and initiatives that assist in community
economic development;
(x) initiatives that create access to in-
creased living options;
(xi) initiatives that address the chal-
lenging behaviors of individuals with devel-
opmental disabilities, including initiatives
that promote positive alternatives to the
use of restraints and seclusion; and
(xii) initiatives that address other
areas of emerging need.
135
SEC. 162. GRANT AUTHORITY.
(a) IN GENERAL.—The Secretary shall award grants,
contracts, or cooperative agreements to public or private
nonprofit entities for projects of national significance re-
lating to individuals with developmental disabilities to
carry out activities described in section 161(2).
(b) FEDERAL INTERAGENCY INITIATIVES.—
(1) IN GENERAL.—
(A) AUTHORITY.—The Secretary may—
(i) enter into agreements with Federal
agencies to jointly carry out activities de-
scribed in section 161(2) or to jointly carry
out activities of common interest related to
the objectives of such section; and
(ii) transfer to such agencies for such
purposes funds appropriated under this
subtitle, and receive and use funds from
such agencies for such purposes.
(B) RELATION TO PROGRAM PURPOSES.—
Funds transferred or received pursuant to this
paragraph shall be used only in accordance with
statutes authorizing the appropriation of such
funds. Such funds shall be made available
through grants, contracts, or cooperative agree-
ments only to recipients eligible to receive such
funds under such statutes.
136
(C) PROCEDURES AND CRITERIA.—If the
Secretary enters into an agreement under this
subsection for the administration of a jointly
funded project—
(i) the agreement shall specify which
agency’s procedures shall be used to award
grants, contracts, or cooperative agree-
ments and to administer such awards;
(ii) the participating agencies may de-
velop a single set of criteria for the jointly
funded project, and may require applicants
to submit a single application for joint re-
view by such agencies; and
(iii) unless the heads of the partici-
pating agencies develop joint eligibility re-
quirements, an applicant for an award for
the project shall meet the eligibility re-
quirements of each program involved.
(2) LIMITATION.—The Secretary may not con-
strue the provisions of this subsection to take prece-
dence over a limitation on joint funding contained in
an applicable statute.
SEC. 163. AUTHORIZATION OF APPROPRIATIONS.
(a) IN GENERAL.—There are authorized to be appro-
priated to carry out the projects specified in this section
137
$16,000,000 for fiscal year 2001, and such sums as may
be necessary for each of fiscal years 2002 through 2007.
(b) USE OF FUNDS.—
(1) GRANTS, CONTRACTS, AND AGREEMENTS.—
Except as provided in paragraph (2), the amount
appropriated under subsection (a) for each fiscal
year shall be used to award grants, or enter into
contracts, cooperative agreements, or other agree-
ments, under section 162.
(2) ADMINISTRATIVE COSTS.—Not more than 1
percent of the amount appropriated under sub-
section (a) for each fiscal year may be used to pro-
vide for the administrative costs (other than com-
pensation of Federal employees) of the Administra-
tion on Developmental Disabilities for administering
this subtitle and subtitles B, C, and D, including
monitoring the performance of and providing tech-
nical assistance to, entities that receive funds under
this title.
(c) TECHNICAL ASSISTANCE
FOR COUNCILS
AND
CENTERS.—
(1) IN GENERAL.—For each covered year, the
Secretary shall expend, to provide technical assist-
ance for entities funded under subtitle B or D, an
amount from funds appropriated under subsection
138
(a) that is not less than the amount the Secretary
expended on technical assistance for entities funded
under that subtitle (or a corresponding provision) in
the previous fiscal year.
(2) COVERED
YEAR.—In this subsection, the
term ‘‘covered year’’ means—
(A) in the case of an expenditure for enti-
ties funded under subtitle B, a fiscal year for
which the amount appropriated under section
129(a) is less than $76,000,000; and
(B) in the case of an expenditure for enti-
ties funded under subtitle D, a fiscal year prior
to the first fiscal year for which the amount ap-
propriated under section 156(a)(1) is not less
than $20,000,000.
(3) REFERENCES.—References in this sub-
section to subtitle D shall not be considered to in-
clude section 153(c)(4).
(d) TECHNICAL ASSISTANCE ON ELECTRONIC INFOR-
MATION SHARING.—In addition to any funds reserved
under subsection (c), the Secretary shall reserve $100,000
from the amount appropriated under subsection (a) for
each fiscal year to carry out section 153(c)(4).
(e) LIMITATION.—For any fiscal year for which the
amount appropriated under subsection (a) is not less than
139
$10,000,000, not more than 50 percent of such amount
shall be used for activities carried out under section
161(2)(A).
TITLE II—FAMILY SUPPORT
SEC. 201. SHORT TITLE.
This title may be cited as the ‘‘Families of Children
With Disabilities Support Act of 1999’’.
SEC. 202. FINDINGS, PURPOSES, AND POLICY.
(a) FINDINGS.—Congress makes the following find-
ings:
(1) It is in the best interest of our Nation to
preserve, strengthen, and maintain the family.
(2) Families of children with disabilities provide
support, care, and training to their children that can
save States millions of dollars. Without the efforts of
family caregivers, many persons with disabilities
would receive care through State-supported out-of-
home placements.
(3) Most families of children with disabilities,
especially families in unserved and underserved pop-
ulations, do not have access to family-centered and
family-directed services to support such families in
their efforts to care for such children at home.
(4) Medical advances and improved health care
have increased the life span of many people with dis-
140
abilities, and the combination of the longer life
spans and the aging of family caregivers places a
continually increasing demand on the finite service
delivery systems of the States.
(5) In 1996, 49 States provided family support
initiatives in response to the needs of families of
children with disabilities. Such initiatives included
the provision of cash subsidies, respite care, and
other forms of support. There is a need in each
State, however, to strengthen, expand, and coordi-
nate the activities of a system of family support
services for families of children with disabilities that
is easily accessible, avoids duplication, uses resources
efficiently, and prevents gaps in services to families
in all areas of the State.
(6) The goals of the Nation properly include the
goal of providing to families of children with disabil-
ities the family support services necessary—
(A) to support the family;
(B) to enable families of children with dis-
abilities to nurture and enjoy their children at
home;
(C) to enable families of children with dis-
abilities to make informed choices and decisions
regarding the nature of supports, resources,
141
services, and other assistance made available to
such families; and
(D) to support family caregivers of adults
with disabilities.
(b) PURPOSES.—The purposes of this title are—
(1) to promote and strengthen the implementa-
tion of comprehensive State systems of family sup-
port services, for families with children with disabil-
ities, that are family-centered and family-directed,
and that provide families with the greatest possible
decisionmaking authority and control regarding the
nature and use of services and support;
(2) to promote leadership by families in plan-
ning, policy development, implementation, and eval-
uation of family support services for families of chil-
dren with disabilities;
(3) to promote and develop interagency coordi-
nation and collaboration between agencies respon-
sible for providing the services; and
(4) to increase the availability of, funding for,
access to, and provision of family support services
for families of children with disabilities.
(c) POLICY.—It is the policy of the United States
that all programs, projects, and activities funded under
this title shall be family-centered and family-directed, and
142
shall be provided in a manner consistent with the goal of
providing families of children with disabilities with the
support the families need to raise their children at home.
SEC. 203. DEFINITIONS AND SPECIAL RULE.
(a) DEFINITIONS.—In this title:
(1) CHILD
WITH
A
DISABILITY.—The term
‘‘child with a disability’’ means an individual who—
(A) has a significant physical or mental
impairment, as defined pursuant to State policy
to the extent that such policy is established
without regard to type of disability; or
(B) is an infant or a young child from
birth through age 8 and has a substantial de-
velopmental delay or specific congenital or ac-
quired condition that presents a high prob-
ability of resulting in a disability if services are
not provided to the infant or child.
(2) FAMILY.—
(A) IN
GENERAL.—Subject to subpara-
graph (B), for purposes of the application of
this title in a State, the term ‘‘family’’ has the
meaning given the term by the State.
(B) EXCLUSION
OF
EMPLOYEES.—The
term does not include an employee who, acting
in a paid employment capacity, provides serv-
143
ices to a child with a disability in an out-of-
home setting such as a hospital, nursing home,
personal care home, board and care home,
group home, or other facility.
(3) FAMILY SUPPORT FOR FAMILIES OF CHIL-
DREN WITH DISABILITIES.—The term ‘‘family sup-
port for families of children with disabilities’’ means
supports, resources, services, and other assistance
provided to families of children with disabilities pur-
suant to State policy that are designed to—
(A) support families in the efforts of such
families to raise their children with disabilities
in the home;
(B) strengthen the role of the family as
primary caregiver for such children;
(C) prevent involuntary out-of-the-home
placement of such children and maintain family
unity; and
(D) reunite families with children with dis-
abilities who have been placed out of the home,
whenever possible.
(4) SECRETARY.—The term ‘‘Secretary’’ means
the Secretary of Health and Human Services.
(5) STATE.—The term ‘‘State’’ means each of
the 50 States of the United States, the District of
144
Columbia, the Commonwealth of Puerto Rico, the
United States Virgin Islands, Guam, American
Samoa, and the Commonwealth of the Northern
Mariana Islands.
(6) SYSTEMS CHANGE ACTIVITIES.—The term
‘‘systems change activities’’ means efforts that result
in laws, regulations, policies, practices, or organiza-
tional structures—
(A) that are family-centered and family-di-
rected;
(B) that facilitate and increase access to,
provision of, and funding for, family support
services for families of children with disabilities;
and
(C) that otherwise accomplish the purposes
of this title.
(b) SPECIAL RULE.—References in this title to a
child with a disability shall be considered to include ref-
erences to an individual who is not younger than age 18
who—
(1) has a significant impairment described in
subsection (a)(1)(A); and
(2) is residing with and receiving assistance
from a family member.
145
SEC. 204. GRANTS TO STATES.
(a) IN GENERAL.—The Secretary shall make grants
to States on a competitive basis, in accordance with the
provisions of this title, to support systems change activi-
ties designed to assist States to develop and implement,
or expand and enhance, a statewide system of family sup-
port services for families of children with disabilities that
accomplishes the purposes of this title.
(b) AWARD PERIOD AND GRANT LIMITATION.—No
grant shall be awarded under this section for a period of
more than 3 years. No State shall be eligible for more
than 1 grant under this section.
(c) AMOUNT OF GRANTS.—
(1) GRANTS TO STATES.—
(A) FEDERAL
MATCHING
SHARE.—From
amounts appropriated under section 212(a), the
Secretary shall pay to each State that has an
application approved under section 205, for
each year of the grant period, an amount that
is—
(i) equal to not more than 75 percent
of the cost of the systems change activities
to be carried out by the State; and
(ii) not less than $100,000 and not
more than $500,000.
146
(B) NON-FEDERAL SHARE.—The non-Fed-
eral share of the cost of the systems change ac-
tivities may be in cash or in kind, fairly evalu-
ated, including plant, equipment, or services.
(2) CALCULATION
OF
AMOUNTS.—The Sec-
retary shall calculate a grant amount described in
paragraph (1) on the basis of—
(A) the amounts available for making
grants under this section; and
(B) the child population of the State con-
cerned.
(d) PRIORITY
FOR
PREVIOUSLY
PARTICIPATING
STATES.—For the second and third fiscal years for which
amounts are appropriated to carry out this section, the
Secretary, in providing payments under this section, shall
give priority to States that received payments under this
section during the preceding fiscal year.
(e) PRIORITIES FOR DISTRIBUTION.—To the extent
practicable, the Secretary shall award grants to States
under this section in a manner that—
(1) is geographically equitable;
(2) distributes the grants among States that
have differing levels of development of statewide sys-
tems of family support services for families of chil-
dren with disabilities; and
147
(3) distributes the grants among States that at-
tempt to meet the needs of unserved and under-
served populations, such as individuals from racial
and ethnic minority backgrounds, disadvantaged in-
dividuals, individuals with limited English pro-
ficiency, and individuals from underserved geo-
graphic areas (rural or urban).
SEC. 205. APPLICATION.
To be eligible to receive a grant under this title, a
State shall submit an application to the Secretary at such
time, in such manner, and containing such information
and assurances as the Secretary may require, including
information about the designation of a lead entity, a de-
scription of available State resources, and assurances that
systems change activities will be family-centered and fam-
ily-directed.
SEC. 206. DESIGNATION OF THE LEAD ENTITY.
(a) DESIGNATION.—The Chief Executive Officer of
a State that desires to receive a grant under section 204,
shall designate the office or entity (referred to in this title
as the ‘‘lead entity’’) responsible for—
(1) submitting the application described in sec-
tion 205 on behalf of the State;
(2) administering and supervising the use of the
amounts made available under the grant;
148
(3) coordinating efforts related to and super-
vising the preparation of the application;
(4) coordinating the planning, development, im-
plementation (or expansion and enhancement), and
evaluation of a statewide system of family support
services for families of children with disabilities
among public agencies and between public agencies
and private agencies, including coordinating efforts
related to entering into interagency agreements;
(5) coordinating efforts related to the participa-
tion by families of children with disabilities in activi-
ties carried out under a grant made under this title;
and
(6) submitting the report described in section
208 on behalf of the State.
(b) QUALIFICATIONS.—In designating the lead entity,
the Chief Executive Officer may designate—
(1) an office of the Chief Executive Officer;
(2) a commission appointed by the Chief Execu-
tive Officer;
(3) a public agency;
(4) a council established under Federal or State
law; or
(5) another appropriate office, agency, or enti-
ty.
149
SEC. 207. AUTHORIZED ACTIVITIES.
(a) IN GENERAL.—A State that receives a grant
under section 204 shall use the funds made available
through the grant to carry out systems change activities
that accomplish the purposes of this title.
(b) SPECIAL RULE.—In carrying out activities au-
thorized under this title, a State shall ensure that such
activities address the needs of families of children with dis-
abilities from unserved or underserved populations.
SEC. 208. REPORTING.
A State that receives a grant under this title shall
prepare and submit to the Secretary, at the end of the
grant period, a report containing the results of State ef-
forts to develop and implement, or expand and enhance,
a statewide system of family support services for families
of children with disabilities.
SEC. 209. TECHNICAL ASSISTANCE.
(a) IN GENERAL.—The Secretary shall enter into
contracts or cooperative agreements with appropriate pub-
lic or private agencies and organizations, including institu-
tions of higher education, with documented experience, ex-
pertise, and capacity, for the purpose of providing tech-
nical assistance and information with respect to the devel-
opment and implementation, or expansion and enhance-
ment, of a statewide system of family support services for
families of children with disabilities.
150
(b) PURPOSE.—An agency or organization that pro-
vides technical assistance and information under this sec-
tion in a State that receives a grant under this title shall
provide the technical assistance and information to the
lead entity of the State, family members of children with
disabilities, organizations, service providers, and policy-
makers involved with children with disabilities and their
families. Such an agency or organization may also provide
technical assistance and information to a State that does
not receive a grant under this title.
(c) REPORTS TO THE SECRETARY.—An entity pro-
viding technical assistance and information under this sec-
tion shall prepare and submit to the Secretary periodic
reports regarding Federal policies and procedures identi-
fied within the States that facilitate or impede the delivery
of family support services to families of children with dis-
abilities. The report shall include recommendations to the
Secretary regarding the delivery of services, coordination
with other programs, and integration of the policies de-
scribed in section 202 in Federal law, other than this title.
SEC. 210. EVALUATION.
(a) IN GENERAL.—The Secretary shall conduct a na-
tional evaluation of the program of grants to States au-
thorized by this title.
(b) PURPOSE.—
151
(1) IN GENERAL.—The Secretary shall conduct
the evaluation under subsection (a) to assess the sta-
tus and effects of State efforts to develop and imple-
ment, or expand and enhance, statewide systems of
family support services for families of children with
disabilities in a manner consistent with the provi-
sions of this title. In particular, the Secretary shall
assess the impact of such efforts on families of chil-
dren with disabilities, and recommend amendments
to this title that are necessary to assist States to ac-
complish fully the purposes of this title.
(2) INFORMATION
SYSTEMS.—The Secretary
shall work with the States to develop an information
system designed to compile and report, from infor-
mation provided by the States, qualitative and quan-
titative descriptions of the impact of the program of
grants to States authorized by this title on—
(A) families of children with disabilities,
including families from unserved and under-
served populations;
(B) access to and funding for family sup-
port services for families of children with dis-
abilities;
152
(C) interagency coordination and collabora-
tion between agencies responsible for providing
the services; and
(D) the involvement of families of children
with disabilities at all levels of the statewide
systems.
(c) REPORT
TO CONGRESS.—Not later than 21⁄2
years after the date of enactment of this Act, the Sec-
retary shall prepare and submit to the appropriate com-
mittees of Congress a report concerning the results of the
evaluation conducted under this section.
SEC. 211. PROJECTS OF NATIONAL SIGNIFICANCE.
(a) STUDY
BY
THE SECRETARY.—The Secretary
shall review Federal programs to determine the extent to
which such programs facilitate or impede access to, provi-
sion of, and funding for family support services for fami-
lies of children with disabilities, consistent with the poli-
cies described in section 202.
(b) PROJECTS OF NATIONAL SIGNIFICANCE.—The
Secretary shall make grants or enter into contracts for
projects of national significance to support the develop-
ment of national and State policies and practices related
to the development and implementation, or expansion and
enhancement, of family-centered and family-directed sys-
153
tems of family support services for families of children
with disabilities.
SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
(a) IN GENERAL.—There are authorized to be appro-
priated to carry out this title such sums as may be nec-
essary for each of fiscal years 2001 through 2007.
(b) RESERVATION.—
(1) IN GENERAL.—The Secretary shall reserve
for each fiscal year 10 percent, or $400,000 (which-
ever is greater), of the amount appropriated pursu-
ant to subsection (a) to carry out—
(A) section 209 (relating to the provision
of technical assistance and information to
States); and
(B) section 210 (relating to the conduct of
evaluations).
(2) SPECIAL RULE.—For each year that the
amount appropriated pursuant to subsection (a) is
$10,000,000 or greater, the Secretary may reserve 5
percent of such amount to carry out section 211.
154
TITLE III—PROGRAM FOR DI-
RECT 
SUPPORT 
WORKERS
WHO 
ASSIST 
INDIVIDUALS
WITH DEVELOPMENTAL DIS-
ABILITIES
SEC. 301. FINDINGS.
Congress finds that—
(1) direct support workers, especially young
adults, have played essential roles in providing the
support needed by individuals with developmental
disabilities and expanding community options for
those individuals;
(2) 4 factors have contributed to a decrease in
the available pool of direct support workers,
specifically—
(A) the small population of individuals who
are age 18 through 25, an age group that has
been attracted to direct support work in the
past;
(B) the rapid expansion of the service sec-
tor, which attracts individuals who previously
would have elected to pursue employment as di-
rect support workers;
155
(C) the failure of wages in the human serv-
ices sector to keep pace with wages in other
service sectors; and
(D) the lack of quality training and career
advancement opportunities available to direct
support workers; and
(3) individuals with developmental disabilities
benefit from assistance from direct support workers
who are well trained, and benefit from receiving
services from professionals who have spent time as
direct support workers.
SEC. 302. DEFINITIONS.
In this title:
(1) DEVELOPMENTAL
DISABILITY.—The term
‘‘developmental disability’’ has the meaning given
the term in section 102.
(2) INSTITUTION OF HIGHER EDUCATION.—The
term ‘‘institution of higher education’’ has the
meaning given the term in section 1201 of the High-
er Education Act of 1965 (20 U.S.C. 1141).
(3) SECRETARY.—The term ‘‘Secretary’’ means
the Secretary of Health and Human Services.
SEC. 303. REACHING UP SCHOLARSHIP PROGRAM.
(a) PROGRAM AUTHORIZATION.—The Secretary may
award grants to eligible entities, on a competitive basis,
156
to enable the entities to carry out scholarship programs
by providing vouchers for postsecondary education to di-
rect support workers who assist individuals with develop-
mental disabilities residing in diverse settings. The Sec-
retary shall award the grants to pay for the Federal share
of the cost of providing the vouchers.
(b) ELIGIBLE ENTITY.—To be eligible to receive a
grant under this section, an entity shall be—
(1) an institution of higher education;
(2) a State agency; or
(3) a consortium of such institutions or agen-
cies.
(c) APPLICATION REQUIREMENTS.—To be eligible to
receive a grant under this section, an eligible entity shall
submit to the Secretary an application at such time, in
such manner, and containing such information as the Sec-
retary may require, including a description of—
(1) the basis for awarding the vouchers;
(2) the number of individuals to receive the
vouchers; and
(3) the amount of funds that will be made
available by the eligible entity to pay for the non-
Federal share of the cost of providing the vouchers.
(d) SELECTION CRITERIA.—In awarding a grant
under this section for a scholarship program, the Sec-
157
retary shall give priority to an entity submitting an appli-
cation that—
(1) specifies that individuals who receive vouch-
ers through the program will be individuals—
(A) who are direct support workers who
assist individuals with developmental disabilities
residing in diverse settings, while pursuing
postsecondary education; and
(B) each of whom verifies, prior to receiv-
ing the voucher, that the worker has completed
250 hours as a direct support worker in the
past 90 days;
(2) states that the vouchers that will be pro-
vided through the program will be in amounts of not
more than $2,000 per year;
(3) provides an assurance that the eligible enti-
ty (or another specified entity that is not a voucher
recipient) will contribute the non-Federal share of
the cost of providing the vouchers; and
(4) meets such other conditions as the Sec-
retary may specify.
(e) FEDERAL SHARE.—The Federal share of the cost
of providing the vouchers shall be not more than 80 per-
cent.
158
SEC. 304. STAFF DEVELOPMENT CURRICULUM AUTHORIZA-
TION.
(a) FUNDING.—
(1) IN GENERAL.—The Secretary shall award
funding, on a competitive basis, through a grant, co-
operative agreement, or contract, to a public or pri-
vate entity or a combination of such entities, for the
development, evaluation, and dissemination of a staff
development curriculum, and related guidelines, for
computer-assisted, competency-based, multimedia,
interactive instruction, relating to service as a direct
support worker.
(2) PARTICIPANTS.—The curriculum shall be
developed for individuals who—
(A) seek to become direct support workers
who assist individuals with developmental dis-
abilities or are such direct support workers; and
(B) seek to upgrade their skills and com-
petencies related to being a direct support
worker.
(b) APPLICATION REQUIREMENTS.—To be eligible to
receive an award under this section, an entity shall submit
to the Secretary an application at such time, in such man-
ner, and containing such information as the Secretary may
require, including—
159
(1) a comprehensive analysis of the content of
direct support roles;
(2) information identifying an advisory group
that—
(A) is comprised of individuals with experi-
ence and expertise with regard to the support
provided by direct support workers, and effec-
tive ways to provide the support, for individuals
with developmental disabilities in diverse set-
tings; and
(B) will advise the entity throughout the
development, evaluation, and dissemination of
the staff development curriculum and guide-
lines;
(3) information describing how the entity will—
(A) develop, field test, and validate a staff
development curriculum that—
(i) relates to the appropriate reading
level for direct service workers who assist
individuals with disabilities;
(ii) allows for multiple levels of in-
struction;
(iii) provides instruction appropriate
for direct support workers who work in di-
verse settings; and
160
(iv) is consistent with subsections (b)
and (c) of section 101 and section 109;
(B) develop, field test, and validate guide-
lines for the organizations that use the cur-
riculum that provide for—
(i) providing necessary technical and
instructional support to trainers and men-
tors for the participants;
(ii) ensuring easy access to and use of
such curriculum by workers that choose to
participate in using, and agencies that
choose to use, the curriculum;
(iii) evaluating the proficiency of the
participants with respect to the content of
the curriculum;
(iv) providing necessary support to the
participants to assure that the participants
have access to, and proficiency in using, a
computer in order to participate in the de-
velopment, testing, and validation process;
(v) providing necessary technical and
instructional support to trainers and men-
tors for the participants in conjunction
with the development, testing, and valida-
tion process;
161
(vi) addressing the satisfaction of par-
ticipants, individuals with developmental
disabilities and their families, providers of
services for such individuals and families,
and other relevant entities with the cur-
riculum; and
(vii) developing methods to maintain a
record of the instruction completed, and
the content mastered, by each participant
under the curriculum; and
(C) nationally disseminate the curriculum
and 
guidelines, 
including 
dissemination
through—
(i) parent training and information
centers funded under part D of the Indi-
viduals with Disabilities Education Act (20
U.S.C. 1451 et seq.);
(ii) community-based organizations of
and for individuals with developmental dis-
abilities and their families;
(iii) entities funded under title I;
(iv) centers for independent living;
(v) State educational agencies and
local educational agencies;
162
(vi) entities operating appropriate
medical facilities;
(vii) postsecondary education entities;
and
(viii) other appropriate entities; and
(4) such other information as the Secretary
may require.
SEC. 305. AUTHORIZATION OF APPROPRIATIONS.
(a) SCHOLARSHIPS.—There are authorized to be ap-
propriated to carry out section 303 $800,000 for fiscal
year 2001 and such sums as may be necessary for each
of fiscal years 2002 through 2007.
(b) STAFF DEVELOPMENT CURRICULUM.—There are
authorized to be appropriated to carry out section 304
$800,000 for fiscal year 2001 and such sums as may be
necessary for each of fiscal years 2002 and 2003.
TITLE IV—REPEAL
SEC. 401. REPEAL.
(a) IN GENERAL.—The Developmental Disabilities
Assistance and Bill of Rights Act (42 U.S.C. 6000 et seq.)
is repealed.
(b) CONFORMING AMENDMENTS.—
(1) INDIVIDUALS
WITH
DISABILITIES
EDU-
CATION ACT.—Sections 644(b)(4) and 685(b)(4) of
the Individuals with Disabilities Education Act (20
171
Disabilities Assistance and Bill of Rights
Act of 1999’’.
(B) Section 5(b)(1) of the Assisted Suicide
Funding Restriction Act of 1997 (42 U.S.C.
14404(b)(1)) is amended by striking subpara-
graph (A) and inserting the following:
‘‘(A) PROTECTION
AND
ADVOCACY
SYS-
TEMS UNDER THE DEVELOPMENTAL DISABIL-
ITIES ASSISTANCE AND BILL OF RIGHTS ACT OF
1999.—Subtitle C of the Developmental Disabil-
ities Assistance and Bill of Rights Act of
1999.’’.
Æ