S. 1809

One Hundred Sixth Congress

of the

United States of America

AT THE SECOND SESSION

Begun and held at the City of Washington on Monday,

the twenty-fourth day of January, two thousand

An Act

To improve service systems for individuals with developmental disabilities, and

for other purposes.

Be it enacted by the Senate and House of Representatives 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.
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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.

Sec. 202. Findings, purposes, and policy.

Sec. 203. Definitions and special rule.

Sec. 204. Grants to States.

Sec. 205. Application.

Sec. 206. Designation of the lead entity.

Sec. 207. Authorized activities.

Sec. 208. Reporting.

Sec. 209. Technical assistance.

Sec. 210. Evaluation.

Sec. 211. Projects of national significance.

Sec. 212. Authorization of appropriations.

TITLE III—PROGRAM FOR DIRECT SUPPORT WORKERS WHO ASSIST

INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES

Sec. 301. Findings.

Sec. 302. Definitions.

Sec. 303. Reaching up scholarship program.

Sec. 304. Staff development curriculum authorization.

Sec. 305. Authorization of appropriations.

TITLE IV—REPEAL

Sec. 401. Repeal.

TITLE I—PROGRAMS FOR INDIVIDUALS

WITH DEVELOPMENTAL DISABILITIES

Subtitle A—General Provisions

SEC. 101. FINDINGS, PURPOSES, AND POLICY.

(a) FINDINGS.—Congress finds that—

(1) disability is a natural part of the human experience

that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and

choice over their own lives, and to fully participate in and

contribute to their communities through full integration and

inclusion in the economic, political, social, cultural, and educational mainstream of United States society;

(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 comprise 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 emphasis (as defined in section

102);

(5) individuals with developmental disabilities are at

greater risk than the general population of abuse, neglect,
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financial and sexual exploitation, and the violation of their

legal and human rights;

(6) a substantial portion of individuals with developmental

disabilities and their families do not have access to appropriate

support and services, including 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, individualized 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, supports, and

other assistance are provided in a culturally competent manner,

that ensures that individuals 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 enhancing 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 communities 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 developmental

disabilities are waiting for appropriate services in their communities, in the areas of emphasis;

(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, working, 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, supports, 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 professions serving individuals

with developmental disabilities and their families;

(16) the goals of the Nation properly include a goal of

providing individuals with developmental disabilities 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, communities, and

States, and the Nation;
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(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, consistent 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 individuals with developmental disabilities

and the effects of those options on individuals with developmental 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 competent programs authorized under this title, including specifically—

(1) State Councils on Developmental Disabilities in each

State to engage in advocacy, capacity building, and systemic

change activities that—

(A) are consistent with the purpose described in this

subsection and the policy described in subsection (c); and

(B) contribute to a coordinated, consumer- and familycentered, consumer- and family-directed, comprehensive

system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental

disabilities and their families;

(2) protection and advocacy systems in each State to protect

the legal and human rights of individuals with developmental

disabilities;

(3) University Centers for Excellence in Developmental

Disabilities Education, Research, and Service—

(A) to provide interdisciplinary pre-service preparation

and continuing education of students and fellows, which

may include the preparation 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 developmental disabilities, their

families, professionals, paraprofessionals, policymakers, students, and other members of the community; and

(ii) that may provide services, supports, and assistance for the persons described 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
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or negatively, individuals 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 information that demonstrates that the

network authorized under this subtitle is a national and

international resource that includes specific substantive

areas of expertise that may be accessed and applied in

diverse settings and circumstances; and

(4) funding for—

(A) national initiatives to collect necessary data on

issues that are directly or indirectly relevant to the lives

of individuals with developmental disabilities;

(B) technical assistance to entities who engage in or

intend to engage in activities consistent with the purpose

described in this subsection 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 assistance under this title

shall be carried out in a manner consistent with the principles

that—

(1) individuals with developmental disabilities, including

those with the most severe developmental disabilities, are

capable of self-determination, independence, productivity, and

integration and inclusion in all facets of community life, but

often require the provision of community services, individualized supports, and other forms of assistance;

(2) individuals with developmental disabilities and their

families have competencies, capabilities, and personal goals

that should be recognized, supported, and encouraged, and

any assistance to such individuals should be provided in an

individualized manner, consistent with the unique strengths,

resources, priorities, concerns, abilities, and capabilities 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 choosing where the individuals live from

available options, and play decisionmaking roles in policies

and programs 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 racial and ethnic minority

backgrounds and their families 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, administration, and policymaking must focus

on bringing larger numbers of racial and ethnic minorities
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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 participation 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 support to be included in

community life, have interdependent relationships, live in

homes and communities, and make contributions to their families, communities, and States, and the Nation;

(9) efforts undertaken to maintain or expand communitybased living options for individuals with disabilities should

be monitored in order to determine and report to appropriate

individuals and entities the extent of access by individuals

with developmental disabilities to those options and the extent

of compliance by entities providing those options with quality

assurance standards;

(10) families of children with developmental disabilities

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 transportation, in order to

be independent and directly contribute to and participate in

all facets of community life; and

(12) individuals with developmental disabilities need to

have access to and use of recreational, leisure, 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 confederation of 2 or more

recognized American Indian tribes, created through the official

action of each participating tribe, that has a combined total

resident 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 assurance activities, education activities and early intervention activities, child carerelated activities, health-related activities, employment-related

activities, housing-related activities, transportation-related

activities, recreation-related activities, and other services available or offered to individuals in a community, including formal

and informal community supports, 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 acquired commercially, modified or

customized, that is used to increase, maintain, or improve
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functional capabilities of individuals with developmental

disabilities.

(4) ASSISTIVE TECHNOLOGY SERVICE.—The term ‘‘assistive

technology service’’ means any service that directly assists an

individual with a developmental 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 individual in the individual’s customary environment;

(B) purchasing, leasing, or otherwise providing for the

acquisition of an assistive technology device by an individual with a developmental disability;

(C) selecting, designing, fitting, customizing, adapting,

applying, maintaining, repairing or replacing an assistive

technology device;

(D) coordinating and using another therapy, intervention, or service with an assistive technology device, such

as a therapy, intervention, or service associated with an

education or rehabilitation plan or program;

(E) providing training or technical assistance for an

individual with a developmental disability, or, where appropriate, a family member, guardian, advocate, or authorized

representative of an individual with a developmental disability; and

(F) providing training or technical assistance for professionals (including individuals providing education and

rehabilitation services), employers, or other individuals who

provide services to, employ, or are otherwise substantially

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 established under subtitle D.

(6) CHILD CARE-RELATED ACTIVITIES.—The term ‘‘child carerelated 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-ofschool services, in their communities.

(7) CULTURALLY COMPETENT.—The term ‘‘culturally competent’’, used with respect to services, supports, or other assistance, means services, supports, or other assistance that is conducted or provided in a manner that is responsive to the beliefs,

interpersonal styles, attitudes, language, and behaviors of

individuals who are receiving the services, supports, or other

assistance, and in a manner that has the greatest likelihood

of ensuring their maximum participation in the program

involved.

(8) DEVELOPMENTAL DISABILITY.—

(A) IN GENERAL.—The term ‘‘developmental disability’’

means a severe, chronic disability of an individual that—

(i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
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(ii) is manifested before the individual attains age

22;

(iii) is likely to continue indefinitely;

(iv) results in substantial functional limitations

in 3 or more of the following areas of major life activity:

(I) Self-care.

(II) Receptive and expressive language.

(III) Learning.

(IV) Mobility.

(V) Self-direction.

(VI) Capacity for independent living.

(VII) Economic self-sufficiency; and

(v) reflects the individual’s need for a combination

and sequence of special, interdisciplinary, or generic

services, individualized supports, or other forms of

assistance that are of lifelong or extended duration

and are individually planned and coordinated.

(B) INFANTS AND YOUNG CHILDREN.—An individual

from birth to age 9, inclusive, who has a substantial

developmental delay or specific congenital or acquired

condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described

in clauses (i) through (v) of subparagraph (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 provided 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 ‘‘education activities’’ means advocacy, capacity building, and systemic change

activities that result in individuals with developmental disabilities being able to access 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 advocacy, capacity building, and

systemic change activities that result in individuals with

developmental disabilities acquiring, retaining, or advancing

in paid employment, including supported employment or selfemployment, in integrated settings in a community.

(12) FAMILY SUPPORT SERVICES.—

(A) IN GENERAL.—The term ‘‘family support services’’

means services, supports, and other assistance, provided

to families with members who have developmental disabilities, that are designed to—

(i) strengthen the family’s role as primary caregiver;

(ii) prevent inappropriate out-of-the-home placement of the members and maintain family unity; and

(iii) reunite families with members who have been

placed out of the home whenever possible.
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(B) SPECIFIC SERVICES.—Such term includes respite

care, provision of rehabilitation technology and assistive

technology, personal assistance services, parent training

and counseling, support for families headed by aging caregivers, vehicular and home modifications, and assistance

with extraordinary expenses, associated with the needs

of individuals with developmental disabilities.

(13) HEALTH-RELATED ACTIVITIES.—The term ‘‘healthrelated 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, mental health, and other human and social

services, including prevention activities, in their communities.

(14) HOUSING-RELATED ACTIVITIES.—The term ‘‘housingrelated activities’’ means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities having access to and use of housing and

housing supports and services in their communities, including

assistance related to renting, owning, or modifying an apartment or home.

(15) INCLUSION.—The term ‘‘inclusion’’, used with respect

to individuals with developmental disabilities, means the

acceptance and encouragement of the presence and participation of individuals with developmental disabilities, by individuals without disabilities, in social, educational, work, and

community activities, that enables individuals with developmental disabilities to—

(A) have friendships and relationships with individuals

and families of their own choice;

(B) live in homes close to community resources, with

regular contact with individuals without disabilities in their

communities;

(C) enjoy full access to and active participation in

the same community activities and types of employment

as individuals without disabilities; and

(D) take full advantage of their integration into the

same community resources as individuals without disabilities, living, learning, working, and enjoying life in regular

contact with individuals without disabilities.

(16) INDIVIDUALIZED SUPPORTS.—The term ‘‘individualized

supports’’ means supports that—

(A) enable an individual with a developmental disability to exercise self-determination, be independent, be

productive, and be integrated 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 restrictive living

arrangement than is necessary; and

(iii) enable such individual to live, learn, work,

and enjoy life in the community; and

(C) include—

(i) early intervention services;

(ii) respite care;

(iii) personal assistance services;
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(iv) family support services;

(v) supported employment services;

(vi) support services for families headed by aging

caregivers of individuals with developmental disabilities; and

(vii) provision of rehabilitation technology and

assistive technology, and assistive technology services.

(17) INTEGRATION.—The term ‘‘integration’’, used with

respect to individuals with developmental disabilities, means

exercising the equal right of individuals 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 organization that is owned or operated

by 1 or more corporations or associations, no part of the net

earnings 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, designed 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

such individual did not have a disability. Such services shall

be designed to increase such individual’s control in life and

ability to perform everyday activities, including activities on

or off a job.

(20) PREVENTION ACTIVITIES.—The term ‘‘prevention activities’’ means activities that address the causes of developmental

disabilities and the exacerbation of functional limitation, such

as activities that—

(A) eliminate or reduce the factors that cause or predispose individuals to developmental disabilities or that

increase the prevalence of developmental disabilities;

(B) increase the early identification of problems to

eliminate circumstances that create or increase functional

limitations; and

(C) mitigate against the effects of developmental

disabilities throughout the lifespan of an individual.

(21) PRODUCTIVITY.—The term ‘‘productivity’’ means—

(A) engagement in income-producing work that is

measured by increased income, improved employment

status, or job advancement; or

(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 accordance with section 143.

(23) QUALITY ASSURANCE ACTIVITIES.—The term ‘‘quality

assurance activities’’ means advocacy, capacity building, and

systemic change activities that result in improved consumerand family-centered quality assurance and that result in systems of quality assurance and consumer protection that—

(A) include monitoring of services, supports, and assistance provided to an individual with developmental disabilities that ensures that the individual—
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(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 inappropriate use

of restraints or seclusion;

(B) include training in leadership, self-advocacy, 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 inappropriate 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 protect the self-determination, independence,

productivity, and integration and inclusion in all facets

of community life, of individuals with developmental

disabilities.

(24) RECREATION-RELATED ACTIVITIES.—The term ‘‘recreation-related activities’’ means advocacy, capacity building, and

systemic change activities that result in individuals with

developmental disabilities having access to and use of recreational, leisure, and social activities, in their communities.

(25) REHABILITATION TECHNOLOGY.—The term ‘‘rehabilitation technology’’ means the systematic application of technologies, engineering methodologies, or scientific principles to

meet the needs of, and address the barriers confronted by,

individuals with developmental disabilities in areas that include

education, rehabilitation, employment, transportation, 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 ‘‘selfdetermination activities’’ means activities that result in individuals with developmental disabilities, with appropriate assistance, having—

(A) the ability and opportunity to communicate and

make personal decisions;

(B) the ability and opportunity to communicate 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 assistance;

(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-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the

development of public policies that affect individuals with

developmental disabilities.
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(28) STATE.—The term ‘‘State’’, except as otherwise 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 DISABILITIES.—

The term ‘‘State Council on Developmental 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 developmental 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 severity 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 activities that result in individuals with developmental disabilities having access to and use

of transportation.

(32) UNSERVED AND UNDERSERVED.—The term ‘‘unserved

and underserved’’ includes populations such as individuals from

racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals

from underserved geographic areas (rural or urban), and specific groups of individuals within the population of individuals

with developmental disabilities, including individuals who

require assistive technology 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 recipient of

the assistance;

(B) the total cost of the project or undertaking 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 effective audit.

(b) ACCESS.—The Secretary and the Comptroller General of

the United States, or any of their duly authorized 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.—
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(1) IN GENERAL.—In order to monitor entities that received

funds under this Act to carry out activities 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 subsection, with respect

to activities conducted after October 1, 2001.

(2) AREAS OF EMPHASIS.—The Secretary shall develop a

process for identifying and reporting (pursuant to section 105)

on progress achieved through advocacy, capacity building, and

systemic change activities, undertaken by the entities described

in paragraph (1), that resulted in individuals with developmental disabilities and their families participating in the design

of and having access to needed community services, individualized supports, and other forms of assistance that promote selfdetermination, independence, productivity, and integration and

inclusion in all facets of community life. Specifically, the Secretary shall develop a process for identifying and reporting

on progress achieved, through advocacy, capacity building, and

systemic change activities, 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 consultation with the Commissioner of

the Administration 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 publish 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 publish final indicators of progress in the Federal

Register.

(D) SPECIFIC MEASURES.—At a minimum, the indicators

of progress shall be used to describe and measure—

(i) the satisfaction of individuals with developmental disabilities with the advocacy, 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 activities 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 individuals have

used;
S. 1809—14

(II) the ability of individuals with developmental disabilities to participate in the full range

of community life with persons of the individuals’

choice; and

(III) the ability of individuals with developmental disabilities to access services, supports, and

assistance in a manner that ensures that such

an individual is free from abuse, neglect, sexual

and financial exploitation, violation 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 INDICATORS OF

PROGRESS.—The Secretary shall require entities described in

paragraph (1) to meet the indicators of progress described in

paragraph (3). For fiscal year 2002 and each year thereafter,

the Secretary shall apply the indicators in monitoring entities

described in paragraph (1), with respect to activities conducted

after October 1, 2001.

(b) TIME LINE FOR REGULATIONS.—Except as otherwise

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 maintain 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 conducted by Federal

departments and agencies for individuals with developmental

disabilities.

(4) MEETINGS.—Each meeting of the interagency 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 information

submitted in the reports and information required under subtitles
S. 1809—15

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 entities funded under subtitles B, C, D, and E, respectively—

(A) have undertaken coordinated activities with each

other;

(B) have enhanced the ability of individuals with

developmental disabilities and their families to 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;

(C) have brought about advocacy, capacity building,

and systemic change activities (including policy reform),

and other actions on behalf of individuals with developmental disabilities and their families, including individuals

who are traditionally unserved or underserved, particularly

individuals who are members of ethnic and racial minority

groups and individuals from underserved geographic areas;

and

(D) have brought about advocacy, capacity building,

and systemic change activities that affect individuals with

disabilities other than individuals with developmental

disabilities;

(2) information on the extent to which programs authorized

under this title have addressed—

(A) protecting individuals with developmental disabilities from abuse, neglect, sexual and financial exploitation,

and violations of legal and human rights, so that those

individuals are at no greater risk of harm than other

persons in the general population; and

(B) reports of deaths of and serious injuries to individuals with developmental disabilities; and

(3) a summary of any incidents of noncompliance 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, maintenance, or operation of any programs, services, and supports 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 DISABILITIES.

As a condition of providing assistance under this title, the

Secretary shall require that each recipient of such assistance 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
S. 1809—16

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 advocacy, capacity building,

and systemic change activities for individuals with developmental

disabilities that may also have a positive impact on individuals

with other disabilities.

SEC. 109. RIGHTS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES.

(a) IN GENERAL.—Congress makes the following findings

respecting the rights of individuals with developmental disabilities:

(1) Individuals with developmental disabilities have a right

to appropriate treatment, services, and habilitation for such

disabilities, consistent with section 101(c).

(2) The treatment, services, and habitation for an individual

with developmental disabilities should be designed to maximize

the potential of the individual 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, residential programs, and other

community programs, including educational programs in which

individuals with developmental disabilities participate, that—

(A) provide treatment, services, and habilitation 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 exploitation, 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 individual unless absolutely

necessary to ensure 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 habilitation 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 program 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 developmental 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,
S. 1809—17

habilitative, assistive technology or rehabilitative services,

that are at least equivalent to those standards applicable

to intermediate care facilities for the mentally retarded,

promulgated in regulations of the Secretary 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 programs for individuals with developmental disabilities, that assure that—

(I) care is appropriate to the needs of the individuals being served by such programs;

(II) the individuals admitted to facilities 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 residents 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 programs 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 individuals.

Subtitle B—Federal Assistance to State

Councils on Developmental Disabilities

SEC. 121. PURPOSE.

The purpose of this subtitle is to provide for allotments to

support State Councils on Developmental Disabilities (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 policy described in section 101(c);

and

(2) contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system

of community services, individualized supports, and other forms

of assistance that enable individuals with developmental

disabilities to exercise self-determination, be independent, be

productive, 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.
S. 1809—18

(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 approved 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 adjusted 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 APPROPRIATIONS 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 Mariana 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.—Notwithstanding

subparagraph (A), if the aggregate 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 fiscal year shall be proportionately reduced.

(4) MINIMUM ALLOTMENT FOR APPROPRIATIONS 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 Mariana 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 requirements 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 paragraph (1)(A)(ii), the extent

of need in any State for services for individuals with developmental disabilities, 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.
S. 1809—19

(6) INCREASE IN ALLOTMENTS.—In any year in which the

total amount appropriated under section 129 for a fiscal year

exceeds the total amount appropriated under such section (or

a corresponding provision) for the preceding fiscal year by a

percentage greater than the most recent percentage change

in the Consumer Price Index published 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), the Secretary shall increase each of the minimum

allotments described in paragraphs (3) and (4). The Secretary

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 increase 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 preceding 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 provides 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 period (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 Federal 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 Secretary estimates the State

needs and will be able to use during such period.
S. 1809—20

(4) REALLOTMENT OF REDUCTIONS.—The Secretary shall

similarly reallot the total of the reductions 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, ADMINISTRATION, 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 portion 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 assistance 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 subsection (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 comprehensive review and analysis

of the extent to which services, 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 individuals 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 developmental disabilities are or may be eligible to participate,

including particularly programs relating to the areas of

emphasis, including—
S. 1809—21

(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, worksite accommodation, and vocational rehabilitation, and other work

assistance programs; and

(iii) social, child welfare, aging, independent living,

and rehabilitation and assistive 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 Technology Act of 1998 (29 U.S.C. 3011,

3012), pursue interagency initiatives to improve and

enhance community services, individualized supports, and

other forms of assistance for individuals with developmental disabilities;

(C) an analysis of the extent to which community 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 community life, identifying

particularly—

(i) the degree of support for individuals with

developmental disabilities that are attributable to

either physical impairment, mental impairment, or a

combination 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 exclude individuals with developmental disabilities from receiving services described in this clause;

(iii) the barriers that impede full participation of

members of unserved and underserved groups of

individuals with developmental disabilities and their

families;

(iv) the availability of assistive technology,

assistive technology services, or rehabilitation technology, or information about assistive technology,

assistive technology services, or rehabilitation technology 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 described in this subparagraph;

(vii) a description of the adequacy of health care

and other services, supports, and assistance that

individuals with developmental disabilities who are

in facilities receive (based in part on each independent

review (pursuant to section 1902(a)(30)(C) of the Social
S. 1809—22

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

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;

(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 contribute 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 contribute 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 advocacy, capacity building,

and systemic change related to the areas of emphasis,

to be undertaken by the Council, that—

(i) are derived from the unmet needs of individuals

with developmental disabilities and their families

identified under paragraph (3); and

(ii) include a goal, for each year of the grant,

to—

(I) establish or strengthen a program for the

direct funding of a State self-advocacy organization

led by individuals with developmental disabilities;

(II) support opportunities for individuals with

developmental disabilities who are considered

leaders to provide leadership training to individuals with developmental disabilities who may

become leaders; and

(III) support and expand participation of

individuals with developmental disabilities in

cross-disability and culturally diverse leadership

coalitions; 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 achieving each

goal; and

(iii) the method to be used to determine if each

goal has been achieved.

(5) ASSURANCES.—
S. 1809—23

(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 supplement, and

not supplant, the non-Federal funds that would otherwise be made available for the purposes for which

the funds paid under section 122 are provided;

(iv) such funds will be used to complement and

augment rather than duplicate or replace services for

individuals with developmental disabilities and their

families 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 portion 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 proper and efficient exercise

of the functions of the designated State agency, except

that not more than 5 percent of such funds provided

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 developmental

disabilities who live in areas designated as urban or rural

poverty areas.
S. 1809—24

(F) PROGRAM ACCESSIBILITY STANDARDS.—The plan

shall provide assurances that programs, projects, and

activities funded under the plan, and the buildings in which

such programs, 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 disabilities and funded under the plan

will be provided in an individualized manner, consistent

with the unique strengths, resources, priorities, concerns,

abilities, and capabilities of such individual.

(H) HUMAN RIGHTS.—The plan shall provide assurances

that the human rights of the individuals with developmental disabilities (especially individuals without familial

protection) who are receiving services under programs

assisted under this subtitle will be protected consistent

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 participation 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 employees 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 retraining of such employees

where necessary, and arrangements under which maximum

efforts will be made to guarantee the employment of such

employees.

(K) STAFF ASSIGNMENTS.—The plan shall provide assurances that the staff and other personnel of the Council,

while working for the Council, will be responsible solely

for assisting the Council in carrying out the duties of

the Council under this subtitle and will not be assigned

duties by the designated State agency, or any other agency,

office, or entity of the State.

(L) NONINTERFERENCE.—The plan shall provide assurances that the designated State agency, and any other

agency, office, or entity of the State, will not interfere

with the advocacy, capacity building, and systemic change

activities, budget, personnel, State plan development, or

plan implementation of the Council, except that the designated State agency shall have the authority necessary

to carry out the responsibilities described in section

125(d)(3).
S. 1809—25

(M) STATE QUALITY ASSURANCE.—The plan shall provide assurances that the Council will participate in the

planning, design or redesign, and monitoring of State

quality assurance systems that affect individuals with

developmental disabilities.

(N) OTHER ASSURANCES.—The plan shall contain such

additional information and assurances as the Secretary

may find necessary to carry out the provisions (including

the purpose) of this subtitle.

(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 comment, after providing appropriate

and sufficient notice 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 designated State agency to ensure that

the State plan is consistent with State law and to obtain

appropriate State plan assurances.

(3) PLAN APPROVAL.—The Secretary shall approve any State

plan and, as appropriate, amendments 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 DISABILITIES AND

DESIGNATED STATE AGENCIES.

(a) IN GENERAL.—Each State that receives assistance under

this subtitle shall establish and maintain a Council to undertake

advocacy, capacity building, and systemic change activities (consistent with subsections (b) and (c) of section 101) that contribute

to a coordinated, consumer- and family-centered, consumer- and

family-directed, comprehensive system of community services,

individualized supports, and other forms of assistance that contribute to the achievement of the purpose of this subtitle. 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 discretion of the Governor,

after soliciting recommendations from organizations representing a broad range of individuals with developmental

disabilities and individuals interested in individuals with

developmental disabilities, including the non-State agency

members of the Council. The Council may, at the initiative

of the Council, or on the request of the Governor, coordinate

Council and public input to the Governor regarding all

recommendations.

(C) REPRESENTATION.—The membership of the Council

shall be geographically representative of the State and
S. 1809—26

reflect the diversity of the State with respect to race and

ethnicity.

(2) MEMBERSHIP ROTATION.—The Governor shall make

appropriate provisions to rotate the membership of the Council.

Such provisions shall allow members to continue to serve on

the Council until such members’ successors are appointed. The

Council shall notify the Governor regarding membership

requirements of the Council, and shall notify the Governor

when vacancies on the Council remain unfilled 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 consist of individuals who are—

(A)(i) individuals with developmental disabilities;

(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 Security 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 ORGANIZATIONS.—

(A) IN GENERAL.—Each Council shall include—

(i) representatives of relevant State entities,

including—

(I) State entities that administer funds provided under Federal laws related to individuals

with disabilities, including the Rehabilitation Act

of 1973 (29 U.S.C. 701 et seq.), the Individuals

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 advocacy system;

and

(ii) representatives, at all times, of local and nongovernmental agencies, 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 program such representatives represent; and

(ii) recuse themselves from any discussion of

grants or contracts for which such representatives’

departments, agencies, or programs are grantees, contractors, or applicants and comply with the conflict
S. 1809—27

of interest assurance requirement under section

124(c)(5)(D).

(5) COMPOSITION OF MEMBERSHIP WITH DEVELOPMENTAL

DISABILITIES.—Of the members of the Council described in paragraph (3)—

(A) 1⁄3 shall be individuals with developmental disabilities described in paragraph (3)(A)(i);

(B) 1⁄3 shall be parents or guardians of children with

developmental disabilities described in paragraph (3)(A)(ii),

or immediate relatives or guardians of adults with developmental disabilities described in paragraph (3)(A)(iii); and

(C) 1⁄3 shall be a combination of individuals 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 disability

who resides or previously resided in an institution.

(B) LIMITATION.—Subparagraph (A) shall not apply

with respect to a State if such an individual does not

reside in that State.

(c) COUNCIL RESPONSIBILITIES.—

(1) IN GENERAL.—A Council, through Council members,

staff, consultants, contractors, or subgrantees, shall have the

responsibilities described in paragraphs (2) through (10).

(2) ADVOCACY, CAPACITY BUILDING, AND SYSTEMIC CHANGE

ACTIVITIES.—The Council shall serve as an advocate for individuals with developmental 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 amendment of the

5-year strategic State plan required under section 124;

(D) separately determine the information on the selfadvocacy 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 designated State agency under the

State plan. Such consultation shall be solely for the purposes

of obtaining State assurances and ensuring consistency of the

plan with State law.

(5) STATE PLAN IMPLEMENTATION.—

(A) IN GENERAL.—The Council shall implement the

State plan by conducting and supporting advocacy, capacity

building, and systemic change activities such as those

described in subparagraphs (B) through (L).
S. 1809—28

(B) OUTREACH.—The Council may support 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

enable the individuals and families to obtain services,

individualized supports, and other forms of assistance,

including access to special adaptation of generic community

services or specialized services.

(C) TRAINING.—The Council may support and conduct

training for persons who are individuals with developmental disabilities, their families, and personnel (including

professionals, paraprofessionals, students, volunteers, and

other community members) to enable such persons to

obtain access to, or to provide, community services, individualized supports, and other forms of assistance, including

special adaptation of generic community services or specialized services for individuals with developmental disabilities

and their families. To the extent that the Council supports

or conducts training activities under this subparagraph,

such activities shall contribute to the achievement of the

purpose of this subtitle.

(D) TECHNICAL ASSISTANCE.—The Council may support

and conduct technical assistance activities to assist public

and private entities to contribute to the achievement of

the purpose of this subtitle.

(E) SUPPORTING AND EDUCATING COMMUNITIES.—The

Council may support and conduct activities to assist

neighborhoods and communities 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 COORDINA- TION.—The Council may support and conduct activities to

promote interagency collaboration and coordination to

better serve, support, assist, or advocate for individuals

with developmental disabilities and their families.

(G) COORDINATION WITH RELATED COUNCILS, COMMIT- TEES, AND PROGRAMS.—The Council may support and conduct activities to enhance coordination of services with—

(i) other councils, entities, or committees, authorized by Federal or State law, concerning individuals

with disabilities (such as the State interagency coordinating council established under subtitle C of the

Individuals with Disabilities Education Act (20 U.S.C.

1431 et seq.), the State Rehabilitation Council and

the Statewide Independent Living Council established

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 Technology Act of 1998 (29 U.S.C. 3011,
S. 1809—29

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 advocacy, capacity

building, and systemic change activities to benefit

individuals with disabilities.

(H) BARRIER ELIMINATION, SYSTEMS DESIGN AND

REDESIGN.—The Council may support and conduct activities

to eliminate barriers to access and use of community services by individuals with developmental disabilities, enhance

systems design and redesign, and enhance citizen participation to address issues identified in the State plan.

(I) COALITION DEVELOPMENT AND CITIZEN PARTICIPATION.—The Council may support 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 coalitions that

support the policy agenda of the Council, including training

in self-advocacy, education of policymakers, and citizen

leadership skills.

(J) INFORMING POLICYMAKERS.—The Council may support and conduct activities to provide information to policymakers by supporting and conducting studies and analyses,

gathering information, and developing and disseminating

model policies and procedures, information, approaches,

strategies, findings, conclusions, and recommendations. The

Council may provide the information directly to Federal,

State, and local policymakers, including Congress, the Federal executive branch, the Governors, State legislatures,

and State agencies, in order to increase the ability of such

policymakers 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 APPROACHES TO SERVICES

AND SUPPORTS.— (i) IN GENERAL.—The Council may support and

conduct, on a time-limited basis, activities to demonstrate new approaches to serving individuals with

developmental disabilities that are a part of an overall

strategy for systemic change. The strategy may involve

the education of policymakers and the public about

how to deliver effectively, to individuals with developmental disabilities and their families, services, supports, and assistance that contribute to the achievement of the purpose of this subtitle.

(ii) SOURCES OF FUNDING.—The Council may carry

out this subparagraph by supporting and conducting

demonstration activities through sources of funding

other than funding provided under this subtitle, and

by assisting entities conducting demonstration activities to develop strategies for securing funding from

other sources.
S. 1809—30

(L) OTHER ACTIVITIES.—The Council may support and

conduct other advocacy, capacity building, and systemic

change activities to promote the development of a coordinated, consumer- and family-centered, consumer- and

family-directed, comprehensive system of community 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

information 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 impeded the achievement;

(D) separate information on the self-advocacy goal

described in section 124(c)(4)(A)(ii);

(E)(i) as appropriate, an update on the results 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 assistance that individuals

with developmental disabilities 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 developmental disabilities

that are directly attributable to Council actions; and

(ii) resources made available for such activities

that are undertaken by the Council 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 available in accessible formats.
S. 1809—31

(8) BUDGET.—Each Council shall prepare, approve, and

implement a budget using amounts paid to the State under

this subtitle to fund and implement all programs, projects,

and activities carried out under this subtitle, including—

(A)(i) conducting such hearings and forums as the

Council may determine to be necessary to carry out the

duties of the Council; and

(ii) as determined in Council policy—

(I) reimbursing members of the Council for reasonable and necessary expenses (including expenses for

child care and personal 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 employed 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

development activities; and

(IV) carrying out appropriate subcontracting activities;

(B) hiring and maintaining such numbers and types

of staff (qualified by training and experience) and obtaining

the services of such professional, consulting, technical, and

clerical staff (qualified by training and experience), consistent with State law, as the Council determines to be

necessary to carry out the functions of the Council under

this subtitle, except that such State shall not apply hiring

freezes, reductions 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 functions 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 authorized by the State plan approved

under section 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, supervise, and annually evaluate the staff of the

Council. Council recruitment, hiring, and dismissal of staff

shall be conducted in a manner consistent with Federal 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 responsible 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
S. 1809—32

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

Education Act (20 U.S.C. 1400 et seq.).

(d) DESIGNATED STATE AGENCY.—

(1) IN GENERAL.—Each State that receives assistance 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 provided 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 provide or pay

for services for individuals with developmental disabilities; or

(iii) a State office, including the immediate office

of the Governor of the State or a State planning office.

(B) CONDITIONS FOR CONTINUATION OF STATE SERVICE

AGENCY DESIGNATION.—

(i) DESIGNATION BEFORE ENACTMENT.—If a State

agency that provides or pays for services for individuals

with developmental 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 enactment of the Developmental Disabilities

Assistance and Bill of Rights Act Amendments of 1994,

and the Governor of the State (or the legislature, where

appropriate and in accordance with State law) determines prior to June 30, 1994, not to change the designation of such agency, such agency may continue

to be a designated State agency for purposes of this

subtitle.

(ii) CRITERIA FOR CONTINUED DESIGNATION.—The

determination, at the discretion 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 designation of such

State agency; and

(II) the Governor (or the legislature, as the

case may be) has made an independent assessment

that the designation of such agency will not interfere with the budget, personnel, priorities, or other

action of the Council, and the ability of the Council

to serve as an independent advocate for individuals

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 documentation
S. 1809—33

concerning the reason the Council desires a change to

be made and make a recommendation 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 nonState 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 negotiated with the Council.

(C) FISCAL RESPONSIBILITIES.—The designated 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 necessary 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 financial reports

at the request of the Council regarding 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 designated State

agency, if other than the Council, shall provide the required

non-Federal share described in section 126(c).

(F) ASSURANCES.—The designated State agency shall

assist the Council in obtaining the appropriate State plan

assurances and in ensuring 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 paragraph (3)
S. 1809—34

for the fiscal year that is not less than the total amount

the State expended from such sources for carrying

out similar responsibilities for the previous fiscal 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

designated 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 paragraphs (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 determined

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 required 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-Federal 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 SUBDIVISIONS 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 agreement with the State shall, subject to such

limitations 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 subtitle.

(B) STATE CONTRIBUTIONS.—State contributions,

including contributions by the designated State agency to
S. 1809—35

provide support services to the Council pursuant to section

125(d)(4), may be counted as part of such State’s nonFederal share of the cost of projects supported under this

subtitle.

(3) VARIATIONS OF THE NON-FEDERAL SHARE.—The nonFederal share required of each recipient of a grant from a

Council under this subtitle may vary.

SEC. 127. WITHHOLDING OF PAYMENTS FOR PLANNING, ADMINISTRATION, 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, particularly provisions required by paragraphs (4)(A) and (5)(B)(vii) of section 124(c), or with any of

the provisions 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 Secretary 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 evidence, 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 proceedings.

Such new or modified findings of fact shall likewise be conclusive

if supported by substantial evidence.
S. 1809—36

(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 appropriated 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 Secretary 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 Secretary 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 allotments to

support a protection and advocacy system (referred to in this subtitle as a ‘‘system’’) in each State to protect the legal and human

rights of individuals with developmental 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 reallotments 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
S. 1809—37

(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.—Notwithstanding 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 section 145 for such fiscal year, the amount

to be allotted to each State for such fiscal year shall be proportionately 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 appropriated under such section (or

a corresponding provision) for the preceding fiscal year by a

percentage greater than the most recent percentage change

in the Consumer Price Index published 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), the Secretary shall increase each of the minimum

allotments 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 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 145

for the fiscal year for which the increase 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 preceding 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 INDIAN 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 assistance to eligible systems

with respect to activities carried out under this subtitle

(consistent with requests by such systems for such assistance for the year); and
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(B) provide a grant in accordance with section 143(b),

and in an amount described in 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 otherwise.

(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 receive 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 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 attention to members of ethnic and racial

minority groups; and

(ii) provide information on and referral to programs

and services addressing the needs of individuals with

developmental disabilities;

(B) have the authority to investigate incidents 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 impairment, mental impairment, or a combination of physical and mental impairment, and their

representatives, and as appropriate, non-State agency representatives of the State Councils on Developmental

Disabilities, and Centers, in the State, an opportunity to

comment on—

(i) the goals and priorities established by the

system and the rationale for the establishment of such

goals; and

(ii) the activities of the system, including the

coordination of services with the entities carrying out

advocacy programs under the Rehabilitation Act of

1973 (29 U.S.C. 701 et seq.), the Older Americans
S. 1809—39

Act of 1965 (42 U.S.C. 3001 et seq.), and the Protection

and Advocacy for Mentally Ill Individuals Act of 1986

(42 U.S.C. 10801 et seq.), and with entities carrying

out other related programs, including the parent

training and information centers funded under the

Individuals with Disabilities Education Act (20 U.S.C.

1400 et seq.), and activities authorized under section

101 or 102 of the Assistive Technology Act of 1998

(29 U.S.C. 3011, 3012);

(E) establish a grievance procedure for clients or

prospective clients of the system to ensure that individuals

with developmental disabilities 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 provides treatment, services, or habilitation to individuals 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 developmental disability

who is a client of the system if such individual, or

the legal guardian, conservator, or other legal representative of such individual, has authorized the

system to have such access;

(ii) any individual with a developmental disability,

in a situation in which—

(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 received by the

system about the individual with regard to the

status or treatment of the individual or, as a result

of monitoring or other activities, there is probable

cause to believe that such individual has been

subject to abuse or neglect; and

(iii) any individual with a developmental disability,

in a situation in which—

(I) the individual has a legal guardian, conservator, or other legal representative;

(II) a complaint has been received by the

system about the individual with regard to the

status or treatment of the individual or, as a result

of monitoring or other activities, 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;
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(IV) such system has offered assistance to such

representative to resolve the situation; and

(V) such representative has failed or refused

to act on behalf of the individual;

(J)(i) have access to the records of individuals described

in subparagraphs (B) and (I), and other records that are

relevant to conducting an investigation, under the circumstances described in those subparagraphs, not later

than 3 business days after the system makes a written

request for the records involved; and

(ii) have immediate access, not later than 24 hours

after the system makes such a request, to the records

without consent from another 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 individual with

a developmental disability;

(K) hire and maintain sufficient numbers and types

of staff (qualified by training and experience) 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 policymakers; and

(M) provide assurances to the Secretary that funds

allotted to the State under section 142 will be used to

supplement, and not supplant, the non-Federal funds that

would otherwise 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 Social Security Act (42 U.S.C.

1396a(a)(30)(C)), of an Intermediate Care Facility (Mental

Retardation) 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 redesignation;

(B) the State has given the agency notice of the

intention to make such redesignation, including notice

regarding the good cause for such redesignation, and given

the agency an opportunity to respond to the assertion that

good cause has been shown;
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(C) the State has given timely notice and an opportunity for public comment in an accessible format to

individuals with developmental disabilities or their representatives; and

(D) the system has an opportunity to appeal the

redesignation to the Secretary, on the basis that the

redesignation was not for good cause.

(b) AMERICAN INDIAN CONSORTIUM.—Upon application to the

Secretary, an American Indian consortium established to provide

protection and advocacy services under this subtitle, shall receive

funding pursuant to section 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 systems

serving the same geographic area. The tribal council that designates

the consortium shall carry out the responsibilities 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—

(1) a report prepared or received by any staff at any location

at which services, supports, or other assistance is provided

to individuals with developmental disabilities;

(2) a report prepared by an agency or staff person 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 knowledgeable 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 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 individuals 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 organization 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 executive officer of the

State involved, in the case of any State in which such officer

has the authority to appoint 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;
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(4) any vacancy in the board shall be filled not later than

60 days after the date on which the vacancy 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 advisory council—

(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 disabilities who

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 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.

(3) LIMITATION.—The system shall use assistance provided

under this subtitle in a manner consistent with section 5 of

the Assisted Suicide Funding 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 carrying out a program to disclose

the identity of, or any other personally identifiable information

related to, any individual requesting assistance under such program.

(d) PUBLIC NOTICE OF FEDERAL ONSITE REVIEW.—The Secretary

shall provide advance public notice of any Federal programmatic

or administrative onsite review 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 report that describes the activities,

accomplishments, and expenditures of the system during the preceding fiscal year, including a description of the system’s goals,

the extent 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 authorized 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.
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Subtitle D—National Network of University Centers for Excellence in Developmental Disabilities Education, Research,

and Service

SEC. 151. GRANT AUTHORITY.

(a) NATIONAL NETWORK.—From appropriations authorized

under section 156(a)(1), the Secretary shall make 5-year grants

to entities in each State designated as University Centers for Excellence in Developmental Disabilities Education, Research, and

Service to carry out activities described in section 153(a).

(b) NATIONAL TRAINING INITIATIVES.—From appropriations

authorized under section 156(a)(1) and reserved under section

156(a)(2), the Secretary shall make grants 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 appropriations 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 requirements 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 appropriated 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 appropriations,

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) (adjusted in accordance with this subsection),

the Secretary shall adjust the awards to take into account the

most recent percentage change in the Consumer Price Index published 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 appropriations, 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 shall make grants under section 151(b) to
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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).

(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 Centers,

for States or populations that are unserved or underserved 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 underserved 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 leadership in, advise

Federal, State, and community policymakers about, and promote opportunities for individuals with developmental disabilities to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community

life, the Secretary shall award grants to eligible entities designated as Centers in each State to pay for the Federal share

of the cost of the administration 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 associated 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 referred to in

paragraph (1) shall include the following:

(A) Provision of interdisciplinary pre-service preparation and continuing education of students and fellows,

which may include the preparation 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 developmental disabilities, their

families, professionals, paraprofessionals, policymakers, students, and other members of the community; and

(ii) that may provide services, supports, and assistance for the persons described in clause (i) through

demonstration and model activities.

(C) Conduct of 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, individuals with developmental disabilities

and their families.
S. 1809—45

(D) Dissemination of information related to activities

undertaken to address the purpose of this title, especially

dissemination of information that demonstrates that the

network authorized under this subtitle is a national and

international resource that includes specific substantive

areas of expertise that may be accessed and applied in

diverse settings and circumstances.

(b) NATIONAL TRAINING INITIATIVES ON CRITICAL AND EMERGING

NEEDS.—

(1) SUPPLEMENTAL GRANTS.—After consultation with relevant, informed sources, including individuals 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 developmental

disabilities and their families. The Secretary shall make the

grants on a competitive basis, and for periods of not more

than 5 years.

(2) ESTABLISHMENT OF CONSULTATION PROCESS BY THE SECRETARY.—Not later than 1 year after the date of enactment

of this Act, the Secretary shall establish a consultation process

that, on an ongoing basis, allows the Secretary to identify

and address, through supplemental grants authorized 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 Secretary may enter into

1 or more cooperative agreements or contracts to—

(1) assist in national and international dissemination of

specific information from multiple Centers and, in appropriate

cases, other entities whose work 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 developmental disabilities;

(4)(A) develop portals that link users with every Center’s

website; and

(B) facilitate electronic information sharing using stateof-the-art Internet technologies such as real-time online discussions, multipoint video conferencing, and web-based audio/video

broadcasts, on emerging topics that impact individuals with

disabilities and their families;

(5) serve as a research-based resource for Federal and

State policymakers on information concerning and issues

impacting individuals with developmental disabilities and entities that assist or serve those individuals; or

(6) undertake any other functions that the Secretary determines to be appropriate;

to promote the viability and use of the resources and expertise

of the Centers nationally and internationally.
S. 1809—46

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 described in section 153(a).

(3) ASSURANCES.—The application shall be approved by

the Secretary only if the application contains or is supported

by reasonable assurances that the entity designated as the

Center will—

(A) meet regulatory standards as established by the

Secretary for Centers;

(B) address the projected goals, and carry out goalrelated activities, based on data driven strategic planning

and in a manner consistent with the objectives of this

subtitle, that—

(i) are developed in collaboration with the consumer advisory committee established pursuant to

subparagraph (E);

(ii) are consistent with, and to the extent feasible

complement and further, the Council goals contained

in the State plan submitted under section 124 and

the system goals established under section 143; and

(iii) will be reviewed and revised annually 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

individuals under State guardianship) who are involved

in activities carried out under programs assisted under

this subtitle;

(E) establish a consumer advisory committee—

(i) of which a majority of the members shall be

individuals with developmental disabilities and family

members of such individuals;

(ii) that is comprised of—

(I) individuals with developmental disabilities

and related disabilities;

(II) family members of individuals 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-advocacy

organization described in section 124(c)(4)(A)(ii)(I);

and
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(VI) representatives of organizations that may

include parent training and information centers

assisted under section 682 or 683 of the Individuals

with Disabilities Education Act (20 U.S.C. 1482,

1483), entities carrying out activities authorized

under section 101 or 102 of the Assistive Technology Act of 1998 (29 U.S.C. 3011, 3012), relevant

State agencies, and other community groups concerned with the welfare of individuals 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 participate in an annual review of, and comment on, the progress of the Center in meeting

the projected goals contained in the plan, and shall

make recommendations to the Director of the

Center regarding any proposed revisions of the

plan that might be necessary; and

(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 infrastructure

and resources obtained through funds made available under

the grant to leverage additional 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 functions described in section

153(a); and

(H) educate, and disseminate information related to

the purpose of this title to, the legislature of the State

in which the Center is located, and to Members of Congress

from such State.

(b) SUPPLEMENTAL GRANT APPLICATIONS PERTAINING TO

NATIONAL TRAINING INITIATIVES IN CRITICAL 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 conditions 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 recommended by a peer review group that has conducted the

peer review required under this paragraph. In conducting the
S. 1809—48

review, the group may conduct 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 Administration 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 classification 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 disabilities and parents,

guardians, or advocates of or for individuals with developmental disabilities, as are necessary to carry out this subsection.

(3) WAIVERS OF APPROVAL.—The Secretary may waive the

provisions of paragraph (1) with respect to review and approval

of an application if the Secretary determines that exceptional

circumstances warrant such a waiver.

(d) FEDERAL SHARE.—

(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, supported 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 necessary 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 section 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—

(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 impeded 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
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(3) a description of successful efforts to leverage 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 Columbia, the Commonwealth of Puerto Rico, the United States Virgin Islands, and Guam.

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 fiscal years 2002 through 2007.

(2) RESERVATION FOR TRAINING INITIATIVES.—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 ASSISTANCE.—

(A) YEARS BEFORE APPROPRIATION TRIGGER.—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 TRIGGER.—For any

fiscal year that is not a covered year, the Secretary shall

reserve not less than $300,000 and not more than 2 percent

of the amount appropriated under paragraph (1) to fund

technical assistance activities under section 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 review 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 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).

Subtitle E—Projects of National

Significance

SEC. 161. PURPOSE.

The purpose of this subtitle is to provide grants, contracts,

or cooperative agreements for projects of national significance that—
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(1) create opportunities for individuals with developmental

disabilities to directly and fully contribute to, and participate

in, all facets of community life; and

(2) support the development of national and State policies

that reinforce and promote, with the support of families, guardians, advocates, and communities, of individuals with developmental disabilities, the self-determination, independence,

productivity, 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 limitations described in

sections 129(b), 156(a)(3), and 163(c); and

(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 assistance for

the development of information and referral systems;

(ii) projects that provide technical assistance 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 participation of racial

and ethnic minorities in public and private sector initiatives in developmental disabilities;

(vi) projects that provide aid to transition youth

with developmental disabilities from school to adult

life, especially in finding employment and postsecondary education opportunities and in upgrading and

changing any assistive technology devices that may

be needed as a youth matures;

(vii) initiatives that address the development of

community quality assurance systems and the training

related to the development, implementation, and

evaluation of such systems, including training of

individuals 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 community;

(ix) initiatives that create greater access 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 increased living

options;

(xi) initiatives that address the challenging behaviors of individuals with developmental disabilities,

including initiatives that promote positive alternatives

to the use of restraints and seclusion; and

(xii) initiatives that address other areas of

emerging need.
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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 relating 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 described 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 agreements only to recipients eligible to receive such funds under

such statutes.

(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 agreements and to administer such

awards;

(ii) the participating agencies may develop a single

set of criteria for the jointly funded project, and may

require applicants to submit a single application for

joint review by such agencies; and

(iii) unless the heads of the participating agencies

develop joint eligibility requirements, an applicant for

an award for the project shall meet the eligibility

requirements of each program involved.

(2) LIMITATION.—The Secretary may not construe the provisions of this subsection to take precedence over a limitation

on joint funding contained in an applicable statute.

SEC. 163. AUTHORIZATION OF APPROPRIATIONS.

(a) IN GENERAL.—There are authorized to be appropriated to carry out the projects specified in this section $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 agreements, under section 162.

(2) ADMINISTRATIVE COSTS.—Not more than 1 percent of

the amount appropriated under subsection (a) for each fiscal

year may be used to provide for the administrative costs (other

than compensation of Federal employees) of the Administration
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on Developmental Disabilities for administering this subtitle

and subtitles B, C, and D, including monitoring the performance

of and providing technical 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 assistance for entities funded under

subtitle B or D, an amount from funds appropriated under

subsection (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 entities 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 entities funded

under subtitle D, a fiscal year prior to the first fiscal

year for which the amount appropriated under section

156(a)(1) is not less than $20,000,000.

(3) REFERENCES.—References in this subsection to subtitle

D shall not be considered to include section 153(c)(4).

(d) TECHNICAL ASSISTANCE ON ELECTRONIC INFORMATION

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 $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 2000’’.

SEC. 202. FINDINGS, PURPOSES, AND POLICY.

(a) FINDINGS.—Congress makes the following findings:

(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 populations, 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 disabilities, and

the combination of the longer life spans and the aging of family
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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 coordinate 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 disabilities the family

support services necessary—

(A) to support the family;

(B) to enable families of children with disabilities to

nurture and enjoy their children at home;

(C) to enable families of children with disabilities to

make informed choices and decisions regarding the nature

of supports, resources, 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 implementation of comprehensive State systems of family support services, for families

with children with disabilities, 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 planning, policy

development, implementation, and evaluation of family support

services for families of children with disabilities;

(3) to promote and develop interagency coordination and

collaboration between agencies responsible 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 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 developmental delay or specific
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congenital or acquired condition that presents a high probability of resulting in a disability if services are not provided to the infant or child.

(2) FAMILY.—

(A) IN GENERAL.—Subject to subparagraph (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 services 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 CHILDREN WITH

DISABILITIES.—The term ‘‘family support for families of children

with disabilities’’ means supports, resources, services, and other

assistance provided to families of children with disabilities

pursuant 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 disabilities 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 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 organizational structures—

(A) that are family-centered and family-directed;

(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 references 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.

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 activities designed to assist States

to develop and implement, or expand and enhance, a statewide

system of family support services for families of children with

disabilities that accomplishes the purposes of this title.
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(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.

(B) NON-FEDERAL SHARE.—The non-Federal share of

the cost of the systems change activities may be in cash

or in kind, fairly evaluated, including plant, equipment,

or services.

(2) CALCULATION OF AMOUNTS.—The Secretary 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 concerned.

(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 systems of family support

services for families of children with disabilities; and

(3) distributes the grants among States that attempt to

meet the needs of unserved and underserved populations, such

as individuals from racial and ethnic minority backgrounds,

disadvantaged individuals, individuals with limited English

proficiency, and individuals from underserved geographic 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 description of available State resources, and assurances

that systems change activities will be family-centered and familydirected.

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—
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(1) submitting the application described in section 205 on

behalf of the State;

(2) administering and supervising the use of the amounts

made available under the grant;

(3) coordinating efforts related to and supervising the

preparation of the application;

(4) coordinating the planning, development, implementation (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 participation by families of children with disabilities in activities 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 Executive Officer;

(3) a public agency;

(4) a council established under Federal or State law; or

(5) another appropriate office, agency, or entity.

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 authorized under

this title, a State shall ensure that such activities address the

needs of families of children with disabilities 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 efforts 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 public or private agencies

and organizations, including institutions of higher education, with

documented experience, expertise, and capacity, for the purpose

of providing technical assistance and information with respect to

the development and implementation, or expansion and enhancement, of a statewide system of family support services for families

of children with disabilities.

(b) PURPOSE.—An agency or organization that provides technical assistance and information under this section 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 policymakers involved with children with disabilities

and their families. Such an agency or organization may also provide
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technical assistance and information to a State that does not receive

a grant under this title.

(c) REPORTS TO THE SECRETARY.—An entity providing technical

assistance and information under this section shall prepare and

submit to the Secretary periodic reports regarding Federal policies

and procedures identified within the States that facilitate or impede

the delivery of family support services to families of children with

disabilities. The report shall include recommendations to the Secretary regarding the delivery of services, coordination with other

programs, and integration of the policies described in section 202

in Federal law, other than this title.

SEC. 210. EVALUATION.

(a) IN GENERAL.—The Secretary shall conduct a national

evaluation of the program of grants to States authorized by this

title.

(b) PURPOSE.— (1) IN GENERAL.—The Secretary shall conduct the evaluation under subsection (a) to assess the status and effects of

State efforts to develop and implement, or expand and enhance,

statewide systems of family support services for families of

children with disabilities in a manner consistent with the provisions of this title. In particular, the Secretary shall assess

the impact of such efforts on families of children with disabilities, and recommend amendments to this title that are necessary to assist States to accomplish 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 information provided by the States, qualitative

and quantitative 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 underserved populations;

(B) access to and funding for family support services

for families of children with disabilities;

(C) interagency coordination and collaboration 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 Secretary shall prepare and

submit to the appropriate committees 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, provision of, and funding for family

support services for families of children with disabilities, consistent

with the policies 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 development of national and State policies

and practices related to the development and implementation, or

expansion and enhancement, of family-centered and family-directed

systems of family support services for families of children with

disabilities.
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SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

(a) IN GENERAL.—There are authorized to be appropriated to

carry out this title such sums as may be necessary 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 (whichever is greater), of the

amount appropriated pursuant 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 appro- priated pursuant to subsection (a) is $10,000,000 or greater,

the Secretary may reserve 5 percent of such amount to carry

out section 211.

TITLE III—PROGRAM FOR DIRECT SUPPORT WORKERS WHO ASSIST INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES

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 sector, which

attracts individuals who previously would have elected to

pursue employment as direct support workers;

(C) the failure of wages in the human services 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 Higher Education Act of 1965 (20 U.S.C.

1141).

(3) SECRETARY.—The term ‘‘Secretary’’ means the Secretary

of Health and Human Services.
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SEC. 303. REACHING UP SCHOLARSHIP PROGRAM.

(a) PROGRAM AUTHORIZATION.—The Secretary may award

grants to eligible entities, on a competitive basis, to enable the

entities to carry out scholarship programs by providing vouchers

for postsecondary education to direct support workers who assist

individuals with developmental disabilities residing in diverse settings. The Secretary 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 agencies.

(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 Secretary 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 Secretary shall give priority

to an entity submitting an application that—

(1) specifies that individuals who receive vouchers 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 receiving 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 provided through

the program will be in amounts of not more than $2,000 per

year;

(3) provides an assurance that the eligible entity (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 Secretary may

specify.

(e) FEDERAL SHARE.—The Federal share of the cost of providing

the vouchers shall be not more than 80 percent.

SEC. 304. STAFF DEVELOPMENT CURRICULUM AUTHORIZATION.

(a) FUNDING.—

(1) IN GENERAL.—The Secretary shall award funding, on

a competitive basis, through a grant, cooperative agreement,

or contract, to a public or private 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—
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(A) seek to become direct support workers who assist

individuals with developmental disabilities or are such

direct support workers; and

(B) seek to upgrade their skills and competencies

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 manner, and containing such

information as the Secretary may require, including—

(1) a comprehensive analysis of the content of direct support

roles;

(2) information identifying an advisory group that—

(A) is comprised of individuals with experience and

expertise with regard to the support provided by direct

support workers, and effective ways to provide the support,

for individuals with developmental disabilities in diverse

settings; and

(B) will advise the entity throughout the development,

evaluation, and dissemination of the staff development curriculum and guidelines;

(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 instruction;

(iii) provides instruction appropriate for direct support workers who work in diverse settings; and

(iv) is consistent with subsections (b) and (c) of

section 101 and section 109;

(B) develop, field test, and validate guidelines for the

organizations that use the curriculum that provide for—

(i) providing necessary technical and instructional

support to trainers and mentors 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 development, testing, and validation process;

(v) providing necessary technical and instructional

support to trainers and mentors for the participants

in conjunction with the development, testing, and

validation process;

(vi) addressing the satisfaction of participants,

individuals with developmental disabilities and their

families, providers of services for such individuals and

families, and other relevant entities with the curriculum; 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—
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(i) parent training and information centers funded

under part D of the Individuals with Disabilities Education Act (20 U.S.C. 1451 et seq.);

(ii) community-based organizations of and for

individuals with developmental disabilities and their

families;

(iii) entities funded under title I;

(iv) centers for independent living;

(v) State educational agencies and local educational agencies;

(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 appropriated

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 EDUCATION ACT.—Sections 644(b)(4) and 685(b)(4) of the Individuals with Disabilities

Education Act (20 U.S.C. 1444(b)(4), 1484a(b)(4)) are amended

by striking ‘‘the Developmental Disabilities Assistance and Bill

of Rights Act’’ and inserting ‘‘the Developmental Disabilities

Assistance and Bill of Rights Act of 2000’’.

(2) NATIVE AMERICAN HOUSING ASSISTANCE AND SELF- DETERMINATION ACT OF 1996.—Section 4(17)(C) of the Native

American Housing Assistance and Self-Determination Act of

1996 (25 U.S.C. 4103(17)(C)) is amended by striking ‘‘as defined

in’’ and all that follows and inserting ‘‘as defined in section

102 of the Developmental Disabilities Assistance and Bill of

Rights Act of 2000.’’.

(3) REHABILITATION ACT OF 1973.—(A) Section 105(c)(6) of

the Rehabilitation Act of 1973 (29 U.S.C. 725(c)(6)) is amended

by striking ‘‘the State Developmental Disabilities Council

described in section 124 of the Developmental Disabilities

Assistance and Bill of Rights Act (42 U.S.C. 6024)’’ and

inserting ‘‘the State Council on Developmental Disabilities

established under section 125 of the Developmental Disabilities

Assistance and Bill of Rights Act of 2000’’.

(B) Sections 202(h)(2)(D)(iii) and 401(a)(5)(A) of the

Rehabilitation Act of 1973 (29 U.S.C. 762(h)(2)(D)(iii),
S. 1809—62

781(a)(5)(A)) are amended by striking ‘‘Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6000 et

seq.)’’ and inserting ‘‘Developmental Disabilities Assistance and

Bill of Rights Act of 2000’’.

(C) Subsections (a)(1)(B)(i), (f)(2), and (m)(1) of section 509

of the Rehabilitation Act of 1973 (29 U.S.C. 794e) are amended

by striking ‘‘part C of the Developmental Disabilities Assistance

and Bill of Rights Act (42 U.S.C. 6041 et seq.)’’ and inserting

‘‘subtitle C of the Developmental Disabilities Assistance and

Bill of Rights Act of 2000’’.

(D) Section 509(f)(5)(B) of the Rehabilitation Act of 1973

(29 U.S.C. 794e(f)(5)(B)) is amended by striking ‘‘Developmental

Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6000

et seq.)’’ and inserting ‘‘Developmental Disabilities Assistance

and Bill of Rights Act of 2000’’.

(4) ASSISTIVE TECHNOLOGY ACT OF 1998.—(A) Section

3(a)(11)(A) of the Assistive Technology Act of 1998 (29 U.S.C.

3002(a)(11)(A)) is amended by striking ‘‘part C of the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C.

6041 et seq.)’’ and inserting ‘‘subtitle C of the Developmental

Disabilities Assistance and Bill of Rights Act of 2000’’.

(B) Paragraphs (1) and (2) of section 102(a) of the Assistive

Technology Act of 1998 (29 U.S.C. 3012(a)) are amended by

striking ‘‘Developmental Disabilities Assistance and Bill of

Rights Act (42 U.S.C. 6000 et seq.)’’ and inserting ‘‘Developmental Disabilities Assistance and Bill of Rights Act of 2000’’.

(5) HEALTH PROGRAMS EXTENSION ACT OF 1973.—Section

401(e) of the Health Programs Extension Act of 1973 (42 U.S.C.

300a–7(e)) is amended by striking ‘‘or the’’ and all that follows

through ‘‘may deny’’ and inserting ‘‘or the Developmental

Disabilities Assistance and Bill of Rights Act of 2000 may

deny’’.

(6) SOCIAL SECURITY ACT.—(A) Section 1919(c)(2)(B)(iii)(III)

of the Social Security Act (42 U.S.C. 1396r(c)(2)(B)(iii)(III)) is

amended by striking ‘‘part C of the Developmental Disabilities

Assistance and Bill of Rights Act’’ and inserting ‘‘subtitle C

of the Developmental Disabilities Assistance and Bill of Rights

Act of 2000’’.

(B) Section 1930(d)(7) of the Social Security Act (42 U.S.C.

1396u(d)(7)) is amended by striking ‘‘State Planning Council

established under section 124 of the Developmental Disabilities

Assistance and Bill of Rights Act, and the Protection and

Advocacy System established under section 142 of such Act’’

and inserting ‘‘State Council on Developmental Disabilities

established under section 125 of the Developmental Disabilities

Assistance and Bill of Rights Act of 2000 and the protection

and advocacy system established under subtitle C of that Act’’.

(7) UNITED STATES HOUSING ACT OF 1937.—Section

3(b)(3)(E)(iii) of the United States Housing Act of 1937 (42

U.S.C. 1437a(b)(3)(E)(iii)) is amended by striking ‘‘developmental disability’’ and all that follows and inserting ‘‘developmental disability as defined in section 102 of the Developmental

Disabilities Assistance and Bill of Rights Act of 2000.’’.

(8) HOUSING ACT OF 1949.—The third sentence of section

501(b)(3) of the Housing Act of 1949 (42 U.S.C. 1471(b)(3))

is amended by striking ‘‘developmental disability’’ and all that

follows and inserting ‘‘developmental disability as defined in
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section 102 of the Developmental Disabilities Assistance and

Bill of Rights Act of 2000.’’.

(9) OLDER AMERICANS ACT OF 1965.—(A) Section 203(b)(17)

of the Older Americans Act of 1965 (42 U.S.C. 3013(b)(17))

is amended by striking ‘‘Developmental Disabilities and Bill

of Rights Act’’ and inserting ‘‘Developmental Disabilities Assistance and Bill of Rights Act of 2000’’.

(B) Section 427(a) of the Older Americans Act of 1965

(42 U.S.C. 3035f(a)) is amended by striking ‘‘part A of the

Developmental Disabilities Assistance and Bill of Rights Act

(42 U.S.C. 6001 et seq.)’’ and inserting ‘‘subtitle C of the

Developmental Disabilities Assistance and Bill of Rights Act

of 2000’’.

(C) Section 429F(a)(1) of the Older Americans Act of 1965

(42 U.S.C. 3035n(a)(1)) is amended by striking ‘‘section 102(5)

of the Developmental Disabilities Assistance and Bill of Rights

Act (42 U.S.C. 6001(5))’’ and inserting ‘‘section 102 of the

Developmental Disabilities Assistance and Bill of Rights Act

of 2000’’.

(D) Section 712(h)(6)(A) of the Older Americans Act of

1965 (42 U.S.C. 3058g(h)(6)(A)) is amended by striking ‘‘part

A of the Developmental Disabilities Assistance and Bill of

Rights Act (42 U.S.C. 6001 et seq.)’’ and inserting ‘‘subtitle

C of the Developmental Disabilities Assistance and Bill of

Rights Act of 2000’’.

(10) CRIME VICTIMS WITH DISABILITIES AWARENESS ACT.—

Section 3 of the Crime Victims With Disabilities Awareness

Act (42 U.S.C. 3732 note) is amended by striking ‘‘term’’ and

all that follows and inserting the following ‘‘term in section

102 of the Developmental Disabilities Assistance and Bill of

Rights Act of 2000.’’.

(11) CRANSTON-GONZALEZ NATIONAL AFFORDABLE HOUSING

ACT.—The third sentence of section 811(k)(2) of the CranstonGonzalez National Affordable Housing Act (42 U.S.C.

8013(k)(2)) is amended by striking ‘‘as defined’’ and all that

follows and inserting ‘‘as defined in section 102 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000.’’.

(12) STATE DEPENDENT CARE DEVELOPMENT GRANTS ACT.—

Section 670G(3) of the State Dependent Care Development

Grants Act (42 U.S.C. 9877(3)) is amended by striking ‘‘section

102(7) of the Developmental Disabilities Assistance and Bill

of Rights Act’’ and inserting ‘‘section 102 of the Developmental

Disabilities Assistance and Bill of Rights Act of 2000’’.

(13) PROTECTION AND ADVOCACY FOR MENTALLY ILL INDIVIDUALS ACT OF 1986.—(A) Section 102(2) of the Protection and

Advocacy for Mentally Ill Individuals Act of 1986 (42 U.S.C.

10802(2)) is amended by striking ‘‘part C of the Developmental

Disabilities Assistance and Bill of Rights Act’’ and inserting

‘‘subtitle C of the Developmental Disabilities Assistance and

Bill of Rights Act of 2000’’.

(B) Section 114 of the Protection and Advocacy for Mentally

Ill Individuals Act of 1986 (42 U.S.C. 10824) is amended by

striking ‘‘section 107(c) of the Developmental Disabilities Assistance and Bill of Rights Act’’ and inserting ‘‘section 105 of

the Developmental Disabilities Assistance and Bill of Rights

Act of 2000’’.
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(14) STEWART B. MCKINNEY HOMELESS ASSISTANCE ACT.—

Section 422(2)(C) of the Stewart B. McKinney Homeless Assistance Act (42 U.S.C. 11382(2)(C)) is amended by striking ‘‘as

defined’’ and all that follows and inserting ‘‘as defined in section

102 of the Developmental Disabilities Assistance and Bill of

Rights Act of 2000, or’’.

(15) ASSISTED SUICIDE FUNDING RESTRICTION ACT OF 1997.—

(A) Section 4 of the Assisted Suicide Funding Restriction Act

of 1997 (42 U.S.C. 14403) is amended—

(i) by striking the section heading and inserting the

following:

‘‘SEC. 4. RESTRICTION ON USE OF FEDERAL FUNDS UNDER CERTAIN

GRANT PROGRAMS.’’;

and

(ii) by striking ‘‘part B, D, or E of the Developmental

Disabilities Assistance and Bill of Rights Act’’ and inserting

‘‘subtitle B, D, or E of the Developmental Disabilities

Assistance and Bill of Rights Act of 2000’’.

(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

subparagraph (A) and inserting the following:

‘‘(A) PROTECTION AND ADVOCACY SYSTEMS UNDER THE

DEVELOPMENTAL DISABILITIES ASSISTANCE AND BILL OF

RIGHTS ACT OF 2000.—Subtitle C of the Developmental

Disabilities Assistance and Bill of Rights Act of 2000.’’.

Speaker of the House of Representatives.

Vice President of the United States and

President of the Senate.