I

106TH CONGRESS

2D SESSION H. R. 4920

To improve service systems for individuals with developmental disabilities,

and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

JULY 24, 2000

Mr. LAZIO (for himself, Mr. HOYER, Mr. BLILEY, Mr. DINGELL, Mr. BILIRAKIS, and Mr. BROWN of Ohio) introduced the following bill; which was

referred to the Committee on Commerce, and in addition to the Committee on Education and the Workforce, for a period to be subsequently

determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned

A BILL

To improve service systems for individuals with

developmental disabilities, and for other purposes.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

4 (a) SHORT TITLE.—This Act may be cited as the

5 ‘‘Developmental Disabilities Assistance and Bill of Rights

6 Act of 2000’’.

7 (b) TABLE OF CONTENTS.—The table of contents of

8 this Act is as follows:
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Sec. 1. Short title; table of contents.

TITLE I—PROGRAMS FOR INDIVIDUALS WITH DEVELOPMENTAL

DISABILITIES

Subtitle A—General Provisions

Sec. 101. Findings, purposes, and policy.

Sec. 102. Definitions.

Sec. 103. Records and audits.

Sec. 104. Responsibilities of the Secretary.

Sec. 105. Reports of the Secretary.

Sec. 106. State control of operations.

Sec. 107. Employment of individuals with disabilities.

Sec. 108. Construction.

Sec. 109. Rights of individuals with developmental disabilities.

Subtitle B—Federal Assistance to State Councils on Developmental

Disabilities

Sec. 121. Purpose.

Sec. 122. State allotments.

Sec. 123. Payments to the States for planning, administration, and services.

Sec. 124. State plan.

Sec. 125. State Councils on Developmental Disabilities and designated State

agencies.

Sec. 126. Federal and non-Federal share.

Sec. 127. Withholding of payments for planning, administration, and services.

Sec. 128. Appeals by States.

Sec. 129. Authorization of appropriations.

Subtitle C—Protection and Advocacy of Individual Rights

Sec. 141. Purpose.

Sec. 142. Allotments and payments.

Sec. 143. System required.

Sec. 144. Administration.

Sec. 145. Authorization of appropriations.

Subtitle D—National Network of University Centers for Excellence in

Developmental Disabilities Education, Research, and Service

Sec. 151. Grant authority.

Sec. 152. Grant awards.

Sec. 153. Purpose and scope of activities.

Sec. 154. Applications.

Sec. 155. Definition.

Sec. 156. Authorization of appropriations.

Subtitle E—Projects of National Significance

Sec. 161. Purpose.

Sec. 162. Grant authority.

Sec. 163. Authorization of appropriations.

TITLE II—FAMILY SUPPORT

Sec. 201. Short title.
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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.

1 TITLE I—PROGRAMS FOR INDI2 VIDUALS WITH DEVELOP3 MENTAL DISABILITIES

4 Subtitle A—General Provisions

5 SEC. 101. FINDINGS, PURPOSES, AND POLICY.

6 (a) FINDINGS.—Congress finds that—

7 (1) disability is a natural part of the human ex8 perience that does not diminish the right of individ9 uals with developmental disabilities to live independ10 ently, to exert control and choice over their own

11 lives, and to fully participate in and contribute to

12 their communities through full integration and inclu13 sion in the economic, political, social, cultural, and

14 educational mainstream of United States society;
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1 (2) in 1999, there were between 3,200,000 and

2 4,500,000 individuals with developmental disabilities

3 in the United States, and recent studies indicate

4 that individuals with developmental disabilities com5 prise between 1.2 and 1.65 percent of the United

6 States population;

7 (3) individuals whose disabilities occur during

8 their developmental period frequently have severe

9 disabilities that are likely to continue indefinitely;

10 (4) individuals with developmental disabilities

11 often encounter discrimination in the provision of

12 critical services, such as services in the areas of em13 phasis (as defined in section 102);

14 (5) individuals with developmental disabilities

15 are at greater risk than the general population of

16 abuse, neglect, financial and sexual exploitation, and

17 the violation of their legal and human rights;

18 (6) a substantial portion of individuals with de19 velopmental disabilities and their families do not

20 have access to appropriate support and services, in21 cluding access to assistive technology, from generic

22 and specialized service systems, and remain unserved

23 or underserved;

24 (7) individuals with developmental disabilities

25 often require lifelong community services, individual-
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1 ized supports, and other forms of assistance, that

2 are most effective when provided in a coordinated

3 manner;

4 (8) there is a need to ensure that services, sup5 ports, and other assistance are provided in a cul6 turally competent manner, that ensures that individ7 uals from racial and ethnic minority backgrounds

8 are fully included in all activities provided under this

9 title;

10 (9) family members, friends, and members of

11 the community can play an important role in en12 hancing the lives of individuals with developmental

13 disabilities, especially when the family members,

14 friends, and community members are provided with

15 the necessary community services, individualized

16 supports, and other forms of assistance;

17 (10) current research indicates that 88 percent

18 of individuals with developmental disabilities live

19 with their families or in their own households;

20 (11) many service delivery systems and commu21 nities are not prepared to meet the impending needs

22 of the 479,862 adults with developmental disabilities

23 who are living at home with parents who are 60

24 years old or older and who serve as the primary

25 caregivers of the adults;
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1 (12) in almost every State, individuals with de2 velopmental disabilities are waiting for appropriate

3 services in their communities, in the areas of empha4 sis;

5 (13) the public needs to be made more aware

6 of the capabilities and competencies of individuals

7 with developmental disabilities, particularly in cases

8 in which the individuals are provided with necessary

9 services, supports, and other assistance;

10 (14) as increasing numbers of individuals with

11 developmental disabilities are living, learning, work12 ing, and participating in all aspects of community

13 life, there is an increasing need for a well trained

14 workforce that is able to provide the services, sup15 ports, and other forms of direct assistance required

16 to enable the individuals to carry out those activities;

17 (15) there needs to be greater effort to recruit

18 individuals from minority backgrounds into profes19 sions serving individuals with developmental disabil20 ities and their families;

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

22 goal of providing individuals with developmental dis23 abilities with the information, skills, opportunities,

24 and support to—
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1 (A) make informed choices and decisions

2 about their lives;

3 (B) live in homes and communities in

4 which such individuals can exercise their full

5 rights and responsibilities as citizens;

6 (C) pursue meaningful and productive

7 lives;

8 (D) contribute to their families, commu9 nities, and States, and the Nation;

10 (E) have interdependent friendships and

11 relationships with other persons;

12 (F) live free of abuse, neglect, financial

13 and sexual exploitation, and violations of their

14 legal and human rights; and

15 (G) achieve full integration and inclusion

16 in society, in an individualized manner, con17 sistent with the unique strengths, resources,

18 priorities, concerns, abilities, and capabilities of

19 each individual; and

20 (17) as the Nation, States, and communities

21 maintain and expand community living options for

22 individuals with developmental disabilities, there is a

23 need to evaluate the access to those options by indi24 viduals with developmental disabilities and the ef-
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1 fects of those options on individuals with develop2 mental disabilities.

3 (b) PURPOSE.—The purpose of this title is to assure

4 that individuals with developmental disabilities and their

5 families participate in the design of and have access to

6 needed community services, individualized supports, and

7 other forms of assistance that promote self-determination,

8 independence, productivity, and integration and inclusion

9 in all facets of community life, through culturally com10 petent programs authorized under this title, including

11 specifically—

12 (1) State Councils on Developmental Disabil13 ities in each State to engage in advocacy, capacity

14 building, and systemic change activities that—

15 (A) are consistent with the purpose de16 scribed in this subsection and the policy de17 scribed in subsection (c); and

18 (B) contribute to a coordinated, consumer19 and family-centered, consumer- and family-di20 rected, comprehensive system that includes

21 needed community services, individualized sup22 ports, and other forms of assistance that pro23 mote self-determination for individuals with de24 velopmental disabilities and their families;
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1 (2) protection and advocacy systems in each

2 State to protect the legal and human rights of indi3 viduals with developmental disabilities;

4 (3) University Centers for Excellence in Devel5 opmental Disabilities Education, Research, and

6 Service—

7 (A) to provide interdisciplinary pre-service

8 preparation and continuing education of stu9 dents and fellows, which may include the prepa10 ration and continuing education of leadership,

11 direct service, clinical, or other personnel to

12 strengthen and increase the capacity of States

13 and communities to achieve the purpose of this

14 title;

15 (B) to provide community services—

16 (i) that provide training and technical

17 assistance for individuals with develop18 mental disabilities, their families, profes19 sionals, paraprofessionals, policymakers,

20 students, and other members of the com21 munity; and

22 (ii) that may provide services, sup23 ports, and assistance for the persons de24 scribed in clause (i) through demonstration

25 and model activities;
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1 (C) to conduct research, which may include

2 basic or applied research, evaluation, and the

3 analysis of public policy in areas that affect or

4 could affect, either positively or negatively, indi5 viduals with developmental disabilities and their

6 families; and

7 (D) to disseminate information related to

8 activities undertaken to address the purpose of

9 this title, especially dissemination of informa10 tion that demonstrates that the network author11 ized under this subtitle is a national and inter12 national resource that includes specific sub13 stantive areas of expertise that may be accessed

14 and applied in diverse settings and cir15 cumstances; and

16 (4) funding for—

17 (A) national initiatives to collect necessary

18 data on issues that are directly or indirectly rel19 evant to the lives of individuals with develop20 mental disabilities;

21 (B) technical assistance to entities who en22 gage in or intend to engage in activities con23 sistent with the purpose described in this sub24 section or the policy described in subsection (c);

25 and
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1 (C) other nationally significant activities.

2 (c) POLICY.—It is the policy of the United States

3 that all programs, projects, and activities receiving assist4 ance under this title shall be carried out in a manner con5 sistent with the principles that—

6 (1) individuals with developmental disabilities,

7 including those with the most severe developmental

8 disabilities, are capable of self-determination, inde9 pendence, productivity, and integration and inclusion

10 in all facets of community life, but often require the

11 provision of community services, individualized sup12 ports, and other forms of assistance;

13 (2) individuals with developmental disabilities

14 and their families have competencies, capabilities,

15 and personal goals that should be recognized, sup16 ported, and encouraged, and any assistance to such

17 individuals should be provided in an individualized

18 manner, consistent with the unique strengths, re19 sources, priorities, concerns, abilities, and capabili20 ties of such individuals;

21 (3) individuals with developmental disabilities

22 and their families are the primary decisionmakers

23 regarding the services and supports such individuals

24 and their families receive, including regarding choos25 ing where the individuals live from available options,
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1 and play decisionmaking roles in policies and pro2 grams that affect the lives of such individuals and

3 their families;

4 (4) services, supports, and other assistance

5 should be provided in a manner that demonstrates

6 respect for individual dignity, personal preferences,

7 and cultural differences;

8 (5) specific efforts must be made to ensure that

9 individuals with developmental disabilities from ra10 cial and ethnic minority backgrounds and their fami11 lies enjoy increased and meaningful opportunities to

12 access and use community services, individualized

13 supports, and other forms of assistance available to

14 other individuals with developmental disabilities and

15 their families;

16 (6) recruitment efforts in disciplines related to

17 developmental disabilities relating to pre-service

18 training, community training, practice, administra19 tion, and policymaking must focus on bringing larg20 er numbers of racial and ethnic minorities into the

21 disciplines in order to provide appropriate skills,

22 knowledge, role models, and sufficient personnel to

23 address the growing needs of an increasingly diverse

24 population;
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1 (7) with education and support, communities

2 can be accessible to and responsive to the needs of

3 individuals with developmental disabilities and their

4 families and are enriched by full and active partici5 pation in community activities, and contributions, by

6 individuals with developmental disabilities and their

7 families;

8 (8) individuals with developmental disabilities

9 have access to opportunities and the necessary sup10 port to be included in community life, have inter11 dependent relationships, live in homes and commu12 nities, and make contributions to their families, com13 munities, and States, and the Nation;

14 (9) efforts undertaken to maintain or expand

15 community-based living options for individuals with

16 disabilities should be monitored in order to deter17 mine and report to appropriate individuals and enti18 ties the extent of access by individuals with develop19 mental disabilities to those options and the extent of

20 compliance by entities providing those options with

21 quality assurance standards;

22 (10) families of children with developmental dis23 abilities need to have access to and use of safe and

24 appropriate child care and before-school and after25 school programs, in the most integrated settings, in
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1 order to enrich the participation of the children in

2 community life;

3 (11) individuals with developmental disabilities

4 need to have access to and use of public transpor5 tation, in order to be independent and directly con6 tribute to and participate in all facets of community

7 life; and

8 (12) individuals with developmental disabilities

9 need to have access to and use of recreational, lei10 sure, and social opportunities in the most integrated

11 settings, in order to enrich their participation in

12 community life.

13 SEC. 102. DEFINITIONS.

14 In this title:

15 (1) AMERICAN INDIAN CONSORTIUM.—The term

16 ‘‘American Indian Consortium’’ means any confed17 eration of 2 or more recognized American Indian

18 tribes, created through the official action of each

19 participating tribe, that has a combined total resi20 dent population of 150,000 enrolled tribal members

21 and a contiguous territory of Indian lands in 2 or

22 more States.

23 (2) AREAS OF EMPHASIS.—The term ‘‘areas of

24 emphasis’’ means the areas related to quality assur25 ance activities, education activities and early inter-
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1 vention activities, child care-related activities, health2 related activities, employment-related activities,

3 housing-related activities, transportation-related ac4 tivities, recreation-related activities, and other serv5 ices available or offered to individuals in a commu6 nity, including formal and informal community sup7 ports, that affect their quality of life.

8 (3) ASSISTIVE TECHNOLOGY DEVICE.—The

9 term ‘‘assistive technology device’’ means any item,

10 piece of equipment, or product system, whether ac11 quired commercially, modified or customized, that is

12 used to increase, maintain, or improve functional ca13 pabilities of individuals with developmental disabil14 ities.

15 (4) ASSISTIVE TECHNOLOGY SERVICE.—The

16 term ‘‘assistive technology service’’ means any serv17 ice that directly assists an individual with a develop18 mental disability in the selection, acquisition, or use

19 of an assistive technology device. Such term

20 includes—

21 (A) conducting an evaluation of the needs

22 of an individual with a developmental disability,

23 including a functional evaluation of the indi24 vidual in the individual’s customary environ25 ment;
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1 (B) purchasing, leasing, or otherwise pro2 viding for the acquisition of an assistive tech3 nology device by an individual with a develop4 mental disability;

5 (C) selecting, designing, fitting, custom6 izing, adapting, applying, maintaining, repair7 ing or replacing an assistive technology device;

8 (D) coordinating and using another ther9 apy, intervention, or service with an assistive

10 technology device, such as a therapy, interven11 tion, or service associated with an education or

12 rehabilitation plan or program;

13 (E) providing training or technical assist14 ance for an individual with a developmental dis15 ability, or, where appropriate, a family member,

16 guardian, advocate, or authorized representative

17 of an individual with a developmental disability;

18 and

19 (F) providing training or technical assist20 ance for professionals (including individuals

21 providing education and rehabilitation services),

22 employers, or other individuals who provide

23 services to, employ, or are otherwise substan24 tially involved in the major life functions of, an

25 individual with developmental disabilities.
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1 (5) CENTER.—The term ‘‘Center’’ means a

2 University Center for Excellence in Developmental

3 Disabilities Education, Research, and Service estab4 lished under subtitle D.

5 (6) CHILD CARE-RELATED ACTIVITIES.—The

6 term ‘‘child care-related activities’’ means advocacy,

7 capacity building, and systemic change activities

8 that result in families of children with developmental

9 disabilities having access to and use of child care

10 services, including before-school, after-school, and

11 out-of-school services, in their communities.

12 (7) CULTURALLY COMPETENT.—The term ‘‘cul13 turally competent’’, used with respect to services,

14 supports, or other assistance, means services, sup15 ports, or other assistance that is conducted or pro16 vided in a manner that is responsive to the beliefs,

17 interpersonal styles, attitudes, language, and behav18 iors of individuals who are receiving the services,

19 supports, or other assistance, and in a manner that

20 has the greatest likelihood of ensuring their max21 imum participation in the program involved.

22 (8) DEVELOPMENTAL DISABILITY.—

23 (A) IN GENERAL.—The term ‘‘develop24 mental disability’’ means a severe, chronic dis25 ability of an individual that—
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1 (i) is attributable to a mental or phys2 ical impairment or combination of mental

3 and physical impairments;

4 (ii) is manifested before the individual

5 attains age 22;

6 (iii) is likely to continue indefinitely;

7 (iv) results in substantial functional

8 limitations in 3 or more of the following

9 areas of major life activity:

10 (I) Self-care.

11 (II) Receptive and expressive lan12 guage.

13 (III) Learning.

14 (IV) Mobility.

15 (V) Self-direction.

16 (VI) Capacity for independent

17 living.

18 (VII) Economic self-sufficiency;

19 and

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

21 combination and sequence of special, inter22 disciplinary, or generic services, individual23 ized supports, or other forms of assistance

24 that are of lifelong or extended duration
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1 and are individually planned and coordi2 nated.

3 (B) INFANTS AND YOUNG CHILDREN.—An

4 individual from birth to age 9, inclusive, who

5 has a substantial developmental delay or spe6 cific congenital or acquired condition, may be

7 considered to have a developmental disability

8 without meeting 3 or more of the criteria de9 scribed in clauses (i) through (v) of subpara10 graph (A) if the individual, without services and

11 supports, has a high probability of meeting

12 those criteria later in life.

13 (9) EARLY INTERVENTION ACTIVITIES.—The

14 term ‘‘early intervention activities’’ means advocacy,

15 capacity building, and systemic change activities pro16 vided to individuals described in paragraph (8)(B)

17 and their families to enhance—

18 (A) the development of the individuals to

19 maximize their potential; and

20 (B) the capacity of families to meet the

21 special needs of the individuals.

22 (10) EDUCATION ACTIVITIES.—The term ‘‘edu23 cation activities’’ means advocacy, capacity building,

24 and systemic change activities that result in individ25 uals with developmental disabilities being able to ac-
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1 cess appropriate supports and modifications when

2 necessary, to maximize their educational potential,

3 to benefit from lifelong educational activities, and to

4 be integrated and included in all facets of student

5 life.

6 (11) EMPLOYMENT-RELATED ACTIVITIES.—The

7 term ‘‘employment-related activities’’ means advo8 cacy, capacity building, and systemic change activi9 ties that result in individuals with developmental dis10 abilities acquiring, retaining, or advancing in paid

11 employment, including supported employment or

12 self-employment, in integrated settings in a commu13 nity.

14 (12) FAMILY SUPPORT SERVICES.—

15 (A) IN GENERAL.—The term ‘‘family sup16 port services’’ means services, supports, and

17 other assistance, provided to families with mem18 bers who have developmental disabilities, that

19 are designed to—

20 (i) strengthen the family’s role as pri21 mary caregiver;

22 (ii) prevent inappropriate out-of-the23 home placement of the members and main24 tain family unity; and
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1 (iii) reunite families with members

2 who have been placed out of the home

3 whenever possible.

4 (B) SPECIFIC SERVICES.—Such term in5 cludes respite care, provision of rehabilitation

6 technology and assistive technology, personal

7 assistance services, parent training and coun8 seling, support for families headed by aging

9 caregivers, vehicular and home modifications,

10 and assistance with extraordinary expenses, as11 sociated with the needs of individuals with de12 velopmental disabilities.

13 (13) HEALTH-RELATED ACTIVITIES.—The term

14 ‘‘health-related activities’’ means advocacy, capacity

15 building, and systemic change activities that result

16 in individuals with developmental disabilities having

17 access to and use of coordinated health, dental, men18 tal health, and other human and social services, in19 cluding prevention activities, in their communities.

20 (14) HOUSING-RELATED ACTIVITIES.—The

21 term ‘‘housing-related activities’’ means advocacy,

22 capacity building, and systemic change activities

23 that result in individuals with developmental disabil24 ities having access to and use of housing and hous25 ing supports and services in their communities, in-
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1 cluding assistance related to renting, owning, or

2 modifying an apartment or home.

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

4 with respect to individuals with developmental dis5 abilities, means the acceptance and encouragement

6 of the presence and participation of individuals with

7 developmental disabilities, by individuals without dis8 abilities, in social, educational, work, and community

9 activities, that enables individuals with develop10 mental disabilities to—

11 (A) have friendships and relationships with

12 individuals and families of their own choice;

13 (B) live in homes close to community re14 sources, with regular contact with individuals

15 without disabilities in their communities;

16 (C) enjoy full access to and active partici17 pation in the same community activities and

18 types of employment as individuals without dis19 abilities; and

20 (D) take full advantage of their integration

21 into the same community resources as individ22 uals without disabilities, living, learning, work23 ing, and enjoying life in regular contact with in24 dividuals without disabilities.
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1 (16) INDIVIDUALIZED SUPPORTS.—The term

2 ‘‘individualized supports’’ means supports that—

3 (A) enable an individual with a develop4 mental disability to exercise self-determination,

5 be independent, be productive, and be inte6 grated and included in all facets of community

7 life;

8 (B) are designed to—

9 (i) enable such individual to control

10 such individual’s environment, permitting

11 the most independent life possible;

12 (ii) prevent placement into a more re13 strictive living arrangement than is nec14 essary; and

15 (iii) enable such individual to live,

16 learn, work, and enjoy life in the commu17 nity; and

18 (C) include—

19 (i) early intervention services;

20 (ii) respite care;

21 (iii) personal assistance services;

22 (iv) family support services;

23 (v) supported employment services;
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1 (vi) support services for families head2 ed by aging caregivers of individuals with

3 developmental disabilities; and

4 (vii) provision of rehabilitation tech5 nology and assistive technology, and assist6 ive technology services.

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

8 used with respect to individuals with developmental

9 disabilities, means exercising the equal right of indi10 viduals with developmental disabilities to access and

11 use the same community resources as are used by

12 and available to other individuals.

13 (18) NOT-FOR-PROFIT.—The term ‘‘not-for14 profit’’, used with respect to an agency, institution,

15 or organization, means an agency, institution, or or16 ganization that is owned or operated by 1 or more

17 corporations or associations, no part of the net earn18 ings of which inures, or may lawfully inure, to the

19 benefit of any private shareholder or individual.

20 (19) PERSONAL ASSISTANCE SERVICES.—The

21 term ‘‘personal assistance services’’ means a range

22 of services, provided by 1 or more individuals, de23 signed to assist an individual with a disability to

24 perform daily activities, including activities on or off

25 a job that such individual would typically perform if
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1 such individual did not have a disability. Such serv2 ices shall be designed to increase such individual’s

3 control in life and ability to perform everyday activi4 ties, including activities on or off a job.

5 (20) PREVENTION ACTIVITIES.—The term ‘‘pre6 vention activities’’ means activities that address the

7 causes of developmental disabilities and the exacer8 bation of functional limitation, such as activities

9 that—

10 (A) eliminate or reduce the factors that

11 cause or predispose individuals to developmental

12 disabilities or that increase the prevalence of

13 developmental disabilities;

14 (B) increase the early identification of

15 problems to eliminate circumstances that create

16 or increase functional limitations; and

17 (C) mitigate against the effects of develop18 mental disabilities throughout the lifespan of an

19 individual.

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

21 means—

22 (A) engagement in income-producing work

23 that is measured by increased income, improved

24 employment status, or job advancement; or
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1 (B) engagement in work that contributes

2 to a household or community.

3 (22) PROTECTION AND ADVOCACY SYSTEM.—

4 The term ‘‘protection and advocacy system’’ means

5 a protection and advocacy system established in ac6 cordance with section 143.

7 (23) QUALITY ASSURANCE ACTIVITIES.—The

8 term ‘‘quality assurance activities’’ means advocacy,

9 capacity building, and systemic change activities

10 that result in improved consumer- and family-cen11 tered quality assurance and that result in systems of

12 quality assurance and consumer protection that—

13 (A) include monitoring of services, sup14 ports, and assistance provided to an individual

15 with developmental disabilities that ensures that

16 the individual—

17 (i) will not experience abuse, neglect,

18 sexual or financial exploitation, or violation

19 of legal or human rights; and

20 (ii) will not be subject to the inappro21 priate use of restraints or seclusion;

22 (B) include training in leadership, self-ad23 vocacy, and self-determination for individuals

24 with developmental disabilities, their families,
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1 and their guardians to ensure that those

2 individuals—

3 (i) will not experience abuse, neglect,

4 sexual or financial exploitation, or violation

5 of legal or human rights; and

6 (ii) will not be subject to the inappro7 priate use of restraints or seclusion; or

8 (C) include activities related to interagency

9 coordination and systems integration that result

10 in improved and enhanced services, supports,

11 and other assistance that contribute to and pro12 tect the self-determination, independence, pro13 ductivity, and integration and inclusion in all

14 facets of community life, of individuals with de15 velopmental disabilities.

16 (24) RECREATION-RELATED ACTIVITIES.—The

17 term ‘‘recreation-related activities’’ means advocacy,

18 capacity building, and systemic change activities

19 that result in individuals with developmental disabil20 ities having access to and use of recreational, leisure,

21 and social activities, in their communities.

22 (25) REHABILITATION TECHNOLOGY.—The

23 term ‘‘rehabilitation technology’’ means the system24 atic application of technologies, engineering meth25 odologies, or scientific principles to meet the needs
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1 of, and address the barriers confronted by, individ2 uals with developmental disabilities in areas that in3 clude education, rehabilitation, employment, trans4 portation, independent living, and recreation. Such

5 term includes rehabilitation engineering, and the

6 provision of assistive technology devices and assistive

7 technology services.

8 (26) SECRETARY.—The term ‘‘Secretary’’

9 means the Secretary of Health and Human Services.

10 (27) SELF-DETERMINATION ACTIVITIES.—The

11 term ‘‘self-determination activities’’ means activities

12 that result in individuals with developmental disabil13 ities, with appropriate assistance, having—

14 (A) the ability and opportunity to commu15 nicate and make personal decisions;

16 (B) the ability and opportunity to commu17 nicate choices and exercise control over the type

18 and intensity of services, supports, and other

19 assistance the individuals receive;

20 (C) the authority to control resources to

21 obtain needed services, supports, and other as22 sistance;

23 (D) opportunities to participate in, and

24 contribute to, their communities; and
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1 (E) support, including financial support, to

2 advocate for themselves and others, to develop

3 leadership skills, through training in self-advo4 cacy, to participate in coalitions, to educate pol5 icymakers, and to play a role in the develop6 ment of public policies that affect individuals

7 with developmental disabilities.

8 (28) STATE.—The term ‘‘State’’, except as oth9 erwise provided, includes, in addition to each of the

10 several States of the United States, the District of

11 Columbia, the Commonwealth of Puerto Rico, the

12 United States Virgin Islands, Guam, American

13 Samoa, and the Commonwealth of the Northern

14 Mariana Islands.

15 (29) STATE COUNCIL ON DEVELOPMENTAL DIS16 ABILITIES.—The term ‘‘State Council on Develop17 mental Disabilities’’ means a Council established

18 under section 125.

19 (30) SUPPORTED EMPLOYMENT SERVICES.—

20 The term ‘‘supported employment services’’ means

21 services that enable individuals with developmental

22 disabilities to perform competitive work in integrated

23 work settings, in the case of individuals with devel24 opmental disabilities—
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1 (A)(i) for whom competitive employment

2 has not traditionally occurred; or

3 (ii) for whom competitive employment has

4 been interrupted or intermittent as a result of

5 significant disabilities; and

6 (B) who, because of the nature and sever7 ity of their disabilities, need intensive supported

8 employment services or extended services in

9 order to perform such work.

10 (31) TRANSPORTATION-RELATED ACTIVITIES.—

11 The term ‘‘transportation-related activities’’ means

12 advocacy, capacity building, and systemic change ac13 tivities that result in individuals with developmental

14 disabilities having access to and use of transpor15 tation.

16 (32) UNSERVED AND UNDERSERVED.—The

17 term ‘‘unserved and underserved’’ includes popu18 lations such as individuals from racial and ethnic

19 minority backgrounds, disadvantaged individuals, in20 dividuals with limited English proficiency, individ21 uals from underserved geographic areas (rural or

22 urban), and specific groups of individuals within the

23 population of individuals with developmental disabil24 ities, including individuals who require assistive tech-
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1 nology in order to participate in and contribute to

2 community life.

3 SEC. 103. RECORDS AND AUDITS.

4 (a) RECORDS.—Each recipient of assistance under

5 this title shall keep such records as the Secretary shall

6 prescribe, including—

7 (1) records that fully disclose—

8 (A) the amount and disposition by such re9 cipient of the assistance;

10 (B) the total cost of the project or under11 taking in connection with which such assistance

12 is given or used; and

13 (C) the amount of that portion of the cost

14 of the project or undertaking that is supplied

15 by other sources; and

16 (2) such other records as will facilitate an effec17 tive audit.

18 (b) ACCESS.—The Secretary and the Comptroller

19 General of the United States, or any of their duly author20 ized representatives, shall have access for the purpose of

21 audit and examination to any books, documents, papers,

22 and records of the recipients of assistance under this title

23 that are pertinent to such assistance.

24 SEC. 104. RESPONSIBILITIES OF THE SECRETARY.

25 (a) PROGRAM ACCOUNTABILITY.—
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1 (1) IN GENERAL.—In order to monitor entities

2 that received funds under this Act to carry out ac3 tivities under subtitles B, C, and D and determine

4 the extent to which the entities have been responsive

5 to the purpose of this title and have taken actions

6 consistent with the policy described in section

7 101(c), the Secretary shall develop and implement

8 an accountability process as described in this sub9 section, with respect to activities conducted after Oc10 tober 1, 2001.

11 (2) AREAS OF EMPHASIS.—The Secretary shall

12 develop a process for identifying and reporting (pur13 suant to section 105) on progress achieved through

14 advocacy, capacity building, and systemic change ac15 tivities, undertaken by the entities described in para16 graph (1), that resulted in individuals with develop17 mental disabilities and their families participating in

18 the design of and having access to needed commu19 nity services, individualized supports, and other

20 forms of assistance that promote self-determination,

21 independence, productivity, and integration and in22 clusion in all facets of community life. Specifically,

23 the Secretary shall develop a process for identifying

24 and reporting on progress achieved, through advo-
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1 cacy, capacity building, and systemic change activi2 ties, by the entities in the areas of emphasis.

3 (3) INDICATORS OF PROGRESS.—

4 (A) IN GENERAL.—In identifying progress

5 made by the entities described in paragraph (1)

6 in the areas of emphasis, the Secretary, in con7 sultation with the Commissioner of the Admin8 istration on Developmental Disabilities and the

9 entities, shall develop indicators for each area

10 of emphasis.

11 (B) PROPOSED INDICATORS.—Not later

12 than 180 days after the date of enactment of

13 this Act, the Secretary shall develop and pub14 lish in the Federal Register for public comment

15 proposed indicators of progress for monitoring

16 how entities described in paragraph (1) have

17 addressed the areas of emphasis described in

18 paragraph (2) in a manner that is responsive to

19 the purpose of this title and consistent with the

20 policy described in section 101(c).

21 (C) FINAL INDICATORS.—Not later than

22 October 1, 2001, the Secretary shall revise the

23 proposed indicators of progress, to the extent

24 necessary based on public comment, and pub-
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1 lish final indicators of progress in the Federal

2 Register.

3 (D) SPECIFIC MEASURES.—At a minimum,

4 the indicators of progress shall be used to de5 scribe and measure—

6 (i) the satisfaction of individuals with

7 developmental disabilities with the advo8 cacy, capacity building, and systemic

9 change activities provided under subtitles

10 B, C, and D;

11 (ii) the extent to which the advocacy,

12 capacity building, and systemic change ac13 tivities provided through subtitles B, C,

14 and D result in improvements in—

15 (I) the ability of individuals with

16 developmental disabilities to make

17 choices and exert control over the

18 type, intensity, and timing of services,

19 supports, and assistance that the indi20 viduals have used;

21 (II) the ability of individuals with

22 developmental disabilities to partici23 pate in the full range of community

24 life with persons of the individuals’

25 choice; and
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1 (III) the ability of individuals

2 with developmental disabilities to ac3 cess services, supports, and assistance

4 in a manner that ensures that such an

5 individual is free from abuse, neglect,

6 sexual and financial exploitation, vio7 lation of legal and human rights, and

8 the inappropriate use of restraints

9 and seclusion; and

10 (iii) the extent to which the entities

11 described in paragraph (1) collaborate with

12 each other to achieve the purpose of this

13 title and the policy described in section

14 101(c).

15 (4) TIME LINE FOR COMPLIANCE WITH INDICA16 TORS OF PROGRESS.—The Secretary shall require

17 entities described in paragraph (1) to meet the indi18 cators of progress described in paragraph (3). For

19 fiscal year 2002 and each year thereafter, the Sec20 retary shall apply the indicators in monitoring enti21 ties described in paragraph (1), with respect to ac22 tivities conducted after October 1, 2001.

23 (b) TIME LINE FOR REGULATIONS.—Except as oth24 erwise expressly provided in this title, the Secretary, not

25 later than 1 year after the date of enactment of this Act,
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1 shall promulgate such regulations as may be required for

2 the implementation of this title.

3 (c) INTERAGENCY COMMITTEE.—

4 (1) IN GENERAL.—The Secretary shall main5 tain the interagency committee authorized in section

6 108 of the Developmental Disabilities Assistance

7 and Bill of Rights Act (42 U.S.C. 6007) as in effect

8 on the day before the date of enactment of this Act,

9 except as otherwise provided in this subsection.

10 (2) COMPOSITION.—The interagency committee

11 shall be composed of representatives of—

12 (A) the Administration on Developmental

13 Disabilities, the Administration on Children,

14 Youth, and Families, the Administration on

15 Aging, and the Health Resources and Services

16 Administration, of the Department of Health

17 and Human Services; and

18 (B) such other Federal departments and

19 agencies as the Secretary of Health and Human

20 Services considers to be appropriate.

21 (3) DUTIES.—Such interagency committee shall

22 meet regularly to coordinate and plan activities con23 ducted by Federal departments and agencies for in24 dividuals with developmental disabilities.
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1 (4) MEETINGS.—Each meeting of the inter2 agency committee (except for any meetings of any

3 subcommittees of the committee) shall be open to

4 the public. Notice of each meeting, and a statement

5 of the agenda for the meeting, shall be published in

6 the Federal Register not later than 14 days before

7 the date on which the meeting is to occur.

8 SEC. 105. REPORTS OF THE SECRETARY.

9 At least once every 2 years, the Secretary, using in10 formation submitted in the reports and information re11 quired under subtitles B, C, D, and E, shall prepare and

12 submit to the President, Congress, and the National

13 Council on Disability, a report that describes the goals and

14 outcomes of programs supported under subtitles B, C, D,

15 and E. In preparing the report, the Secretary shall

16 provide—

17 (1) meaningful examples of how the councils,

18 protection and advocacy systems, centers, and enti19 ties funded under subtitles B, C, D, and E,

20 respectively—

21 (A) have undertaken coordinated activities

22 with each other;

23 (B) have enhanced the ability of individ24 uals with developmental disabilities and their

25 families to participate in the design of and have
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•HR 4920 IH

1 access to needed community services, individ2 ualized supports, and other forms of assistance

3 that promote self-determination, independence,

4 productivity, and integration and inclusion in

5 all facets of community life;

6 (C) have brought about advocacy, capacity

7 building, and systemic change activities (includ8 ing policy reform), and other actions on behalf

9 of individuals with developmental disabilities

10 and their families, including individuals who are

11 traditionally unserved or underserved, particu12 larly individuals who are members of ethnic and

13 racial minority groups and individuals from un14 derserved geographic areas; and

15 (D) have brought about advocacy, capacity

16 building, and systemic change activities that af17 fect individuals with disabilities other than indi18 viduals with developmental disabilities;

19 (2) information on the extent to which pro20 grams authorized under this title have addressed—

21 (A) protecting individuals with develop22 mental disabilities from abuse, neglect, sexual

23 and financial exploitation, and violations of

24 legal and human rights, so that those individ-
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1 uals are at no greater risk of harm than other

2 persons in the general population; and

3 (B) reports of deaths of and serious inju4 ries to individuals with developmental disabil5 ities; and

6 (3) a summary of any incidents of noncompli7 ance of the programs authorized under this title

8 with the provisions of this title, and corrections

9 made or actions taken to obtain compliance.

10 SEC. 106. STATE CONTROL OF OPERATIONS.

11 Except as otherwise specifically provided, nothing in

12 this title shall be construed as conferring on any Federal

13 officer or employee the right to exercise any supervision

14 or control over the administration, personnel, mainte15 nance, or operation of any programs, services, and sup16 ports for individuals with developmental disabilities with

17 respect to which any funds have been or may be expended

18 under this title.

19 SEC. 107. EMPLOYMENT OF INDIVIDUALS WITH DISABIL20 ITIES.

21 As a condition of providing assistance under this title,

22 the Secretary shall require that each recipient of such as23 sistance take affirmative action to employ and advance in

24 employment qualified individuals with disabilities on the

25 same terms and conditions required with respect to the
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1 employment of such individuals under the provisions of

2 title V of the Rehabilitation Act of 1973 (29 U.S.C. 791

3 et seq.) and the Americans with Disabilities Act of 1990

4 (42 U.S.C. 12101 et seq.), that govern employment.

5 SEC. 108. CONSTRUCTION.

6 Nothing in this title shall be construed to preclude

7 an entity funded under this title from engaging in advo8 cacy, capacity building, and systemic change activities for

9 individuals with developmental disabilities that may also

10 have a positive impact on individuals with other disabil11 ities.

12 SEC. 109. RIGHTS OF INDIVIDUALS WITH DEVELOPMENTAL

13 DISABILITIES.

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

15 findings respecting the rights of individuals with develop16 mental disabilities:

17 (1) Individuals with developmental disabilities

18 have a right to appropriate treatment, services, and

19 habilitation for such disabilities, consistent with sec20 tion 101(c).

21 (2) The treatment, services, and habitation for

22 an individual with developmental disabilities should

23 be designed to maximize the potential of the indi24 vidual and should be provided in the setting that is

25 least restrictive of the individual’s personal liberty.
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1 (3) The Federal Government and the States

2 both have an obligation to ensure that public funds

3 are provided only to institutional programs, residen4 tial programs, and other community programs, in5 cluding educational programs in which individuals

6 with developmental disabilities participate, that—

7 (A) provide treatment, services, and habili8 tation that are appropriate to the needs of such

9 individuals; and

10 (B) meet minimum standards relating to—

11 (i) provision of care that is free of

12 abuse, neglect, sexual and financial exploi13 tation, and violations of legal and human

14 rights and that subjects individuals with

15 developmental disabilities to no greater

16 risk of harm than others in the general

17 population;

18 (ii) provision to such individuals of

19 appropriate and sufficient medical and

20 dental services;

21 (iii) prohibition of the use of physical

22 restraint and seclusion for such an indi23 vidual unless absolutely necessary to en24 sure the immediate physical safety of the

25 individual or others, and prohibition of the
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1 use of such restraint and seclusion as a

2 punishment or as a substitute for a habili3 tation program;

4 (iv) prohibition of the excessive use of

5 chemical restraints on such individuals and

6 the use of such restraints as punishment

7 or as a substitute for a habilitation pro8 gram or in quantities that interfere with

9 services, treatment, or habilitation for such

10 individuals; and

11 (v) provision for close relatives or

12 guardians of such individuals to visit the

13 individuals without prior notice.

14 (4) All programs for individuals with develop15 mental disabilities should meet standards—

16 (A) that are designed to assure the most

17 favorable possible outcome for those served; and

18 (B)(i) in the case of residential programs

19 serving individuals in need of comprehensive

20 health-related, habilitative, assistive technology

21 or rehabilitative services, that are at least

22 equivalent to those standards applicable to in23 termediate care facilities for the mentally re24 tarded, promulgated in regulations of the Sec25 retary on June 3, 1988, as appropriate, taking
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1 into account the size of the institutions and the

2 service delivery arrangements of the facilities of

3 the programs;

4 (ii) in the case of other residential pro5 grams for individuals with developmental dis6 abilities, that assure that—

7 (I) care is appropriate to the needs of

8 the individuals being served by such pro9 grams;

10 (II) the individuals admitted to facili11 ties of such programs are individuals

12 whose needs can be met through services

13 provided by such facilities; and

14 (III) the facilities of such programs

15 provide for the humane care of the resi16 dents of the facilities, are sanitary, and

17 protect their rights; and

18 (iii) in the case of nonresidential programs,

19 that assure that the care provided by such pro20 grams is appropriate to the individuals served

21 by the programs.

22 (b) CLARIFICATION.—The rights of individuals with

23 developmental disabilities described in findings made in

24 this section shall be considered to be in addition to any
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1 constitutional or other rights otherwise afforded to all in2 dividuals.

3 Subtitle B—Federal Assistance to

4 State Councils on Develop5 mental Disabilities

6 SEC. 121. PURPOSE.

7 The purpose of this subtitle is to provide for allot8 ments to support State Councils on Developmental Dis9 abilities (referred to individually in this subtitle as a

10 ‘‘Council’’) in each State to—

11 (1) engage in advocacy, capacity building, and

12 systemic change activities that are consistent with

13 the purpose described in section 101(b) and the pol14 icy described in section 101(c); and

15 (2) contribute to a coordinated, consumer- and

16 family-centered, consumer- and family-directed, com17 prehensive system of community services, individual18 ized supports, and other forms of assistance that en19 able individuals with developmental disabilities to ex20 ercise self-determination, be independent, be produc21 tive, and be integrated and included in all facets of

22 community life.

23 SEC. 122. STATE ALLOTMENTS.

24 (a) ALLOTMENTS.—

25 (1) IN GENERAL.—
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1 (A) AUTHORITY.—For each fiscal year, the

2 Secretary shall, in accordance with regulations

3 and this paragraph, allot the sums appropriated

4 for such year under section 129 among the

5 States on the basis of—

6 (i) the population;

7 (ii) the extent of need for services for

8 individuals with developmental disabilities;

9 and

10 (iii) the financial need,

11 of the respective States.

12 (B) USE OF FUNDS.—Sums allotted to the

13 States under this section shall be used to pay

14 for the Federal share of the cost of carrying out

15 projects in accordance with State plans ap16 proved under section 124 for the provision

17 under such plans of services for individuals with

18 developmental disabilities.

19 (2) ADJUSTMENTS.—The Secretary may make

20 adjustments in the amounts of State allotments

21 based on clauses (i), (ii), and (iii) of paragraph

22 (1)(A) not more often than annually. The Secretary

23 shall notify each State of any adjustment made

24 under this paragraph and the percentage of the total

25 sums appropriated under section 129 that the ad-
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1 justed allotment represents not later than 6 months

2 before the beginning of the fiscal year in which such

3 adjustment is to take effect.

4 (3) MINIMUM ALLOTMENT FOR APPROPRIA5 TIONS LESS THAN OR EQUAL TO $70,000,000.—

6 (A) IN GENERAL.—Except as provided in

7 paragraph (4), for any fiscal year the allotment

8 under this section—

9 (i) to each of American Samoa,

10 Guam, the United States Virgin Islands, or

11 the Commonwealth of the Northern Mar12 iana Islands may not be less than

13 $210,000; and

14 (ii) to any State not described in

15 clause (i) may not be less than $400,000.

16 (B) REDUCTION OF ALLOTMENT.—Not17 withstanding subparagraph (A), if the aggre18 gate of the amounts to be allotted to the States

19 pursuant to subparagraph (A) for any fiscal

20 year exceeds the total amount appropriated

21 under section 129 for such fiscal year, the

22 amount to be allotted to each State for such fis23 cal year shall be proportionately reduced.

24 (4) MINIMUM ALLOTMENT FOR APPROPRIA25 TIONS IN EXCESS OF $70,000,000.—
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1 (A) IN GENERAL.—In any case in which

2 the total amount appropriated under section

3 129 for a fiscal year is more than $70,000,000,

4 the allotment under this section for such fiscal

5 year—

6 (i) to each of American Samoa,

7 Guam, the United States Virgin Islands, or

8 the Commonwealth of the Northern Mar9 iana Islands may not be less than

10 $220,000; and

11 (ii) to any State not described in

12 clause (i) may not be less than $450,000.

13 (B) REDUCTION OF ALLOTMENT.—The re14 quirements of paragraph (3)(B) shall apply

15 with respect to amounts to be allotted to States

16 under subparagraph (A), in the same manner

17 and to the same extent as such requirements

18 apply with respect to amounts to be allotted to

19 States under paragraph (3)(A).

20 (5) STATE SUPPORTS, SERVICES, AND OTHER

21 ACTIVITIES.—In determining, for purposes of para22 graph (1)(A)(ii), the extent of need in any State for

23 services for individuals with developmental disabil24 ities, the Secretary shall take into account the scope

25 and extent of the services, supports, and assistance
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1 described, pursuant to section 124(c)(3)(A), in the

2 State plan of the State.

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

4 which the total amount appropriated under section

5 129 for a fiscal year exceeds the total amount appro6 priated under such section (or a corresponding pro7 vision) for the preceding fiscal year by a percentage

8 greater than the most recent percentage change in

9 the Consumer Price Index published by the Sec10 retary of Labor under section 100(c)(1) of the Reha11 bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the

12 percentage change indicates an increase), the Sec13 retary shall increase each of the minimum allot14 ments described in paragraphs (3) and (4). The Sec15 retary shall increase each minimum allotment by an

16 amount that bears the same ratio to the amount of

17 such minimum allotment (including any increases in

18 such minimum allotment under this paragraph (or a

19 corresponding provision) for prior fiscal years) as

20 the amount that is equal to the difference between—

21 (A) the total amount appropriated under

22 section 129 for the fiscal year for which the in23 crease in the minimum allotment is being made;

24 minus
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1 (B) the total amount appropriated under

2 section 129 (or a corresponding provision) for

3 the immediately preceding fiscal year,

4 bears to the total amount appropriated under section

5 129 (or a corresponding provision) for such pre6 ceding fiscal year.

7 (b) UNOBLIGATED FUNDS.—Any amount paid to a

8 State for a fiscal year and remaining unobligated at the

9 end of such year shall remain available to such State for

10 the next fiscal year for the purposes for which such

11 amount was paid.

12 (c) OBLIGATION OF FUNDS.—For the purposes of

13 this subtitle, State Interagency Agreements are considered

14 valid obligations for the purpose of obligating Federal

15 funds allotted to the State under this subtitle.

16 (d) COOPERATIVE EFFORTS BETWEEN STATES.—If

17 a State plan approved in accordance with section 124 pro18 vides for cooperative or joint effort between or among

19 States or agencies, public or private, in more than 1 State,

20 portions of funds allotted to 1 or more States described

21 in this subsection may be combined in accordance with the

22 agreements between the States or agencies involved.

23 (e) REALLOTMENTS.—

24 (1) IN GENERAL.—If the Secretary determines

25 that an amount of an allotment to a State for a pe-
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1 riod (of a fiscal year or longer) will not be required

2 by the State during the period for the purpose for

3 which the allotment was made, the Secretary may

4 reallot the amount.

5 (2) TIMING.—The Secretary may make such a

6 reallotment from time to time, on such date as the

7 Secretary may fix, but not earlier than 30 days after

8 the Secretary has published notice of the intention

9 of the Secretary to make the reallotment in the Fed10 eral Register.

11 (3) AMOUNTS.—The Secretary shall reallot the

12 amount to other States with respect to which the

13 Secretary has not made that determination. The

14 Secretary shall reallot the amount in proportion to

15 the original allotments of the other States for such

16 fiscal year, but shall reduce such proportionate

17 amount for any of the other States to the extent the

18 proportionate amount exceeds the sum that the Sec19 retary estimates the State needs and will be able to

20 use during such period.

21 (4) REALLOTMENT OF REDUCTIONS.—The Sec22 retary shall similarly reallot the total of the reduc23 tions among the States whose proportionate

24 amounts were not so reduced.
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1 (5) TREATMENT.—Any amount reallotted to a

2 State under this subsection for a fiscal year shall be

3 deemed to be a part of the allotment of the State

4 under subsection (a) for such fiscal year.

5 SEC. 123. PAYMENTS TO THE STATES FOR PLANNING, AD6 MINISTRATION, AND SERVICES.

7 (a) STATE PLAN EXPENDITURES.—From each

8 State’s allotments for a fiscal year under section 122, the

9 Secretary shall pay to the State the Federal share of the

10 cost, other than the cost for construction, incurred during

11 such year for activities carried out under the State plan

12 approved under section 124. The Secretary shall make

13 such payments from time to time in advance on the basis

14 of estimates by the Secretary of the sums the State will

15 expend for the cost under the State plan. The Secretary

16 shall make such adjustments as may be necessary to the

17 payments on account of previously made underpayments

18 or overpayments under this section.

19 (b) DESIGNATED STATE AGENCY EXPENDITURES.—

20 The Secretary may make payments to a State for the por21 tion described in section 124(c)(5)(B)(vi) in advance or

22 by way of reimbursement, and in such installments as the

23 Secretary may determine.
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1 SEC. 124. STATE PLAN.

2 (a) IN GENERAL.—Any State desiring to receive as3 sistance under this subtitle shall submit to the Secretary,

4 and obtain approval of, a 5-year strategic State plan under

5 this section.

6 (b) PLANNING CYCLE.—The plan described in sub7 section (a) shall be updated as appropriate during the 5-

8 year period.

9 (c) STATE PLAN REQUIREMENTS.—In order to be

10 approved by the Secretary under this section, a State plan

11 shall meet each of the following requirements:

12 (1) STATE COUNCIL.—The plan shall provide

13 for the establishment and maintenance of a Council

14 in accordance with section 125 and describe the

15 membership of such Council.

16 (2) DESIGNATED STATE AGENCY.—The plan

17 shall identify the agency or office within the State

18 designated to support the Council in accordance with

19 this section and section 125(d) (referred to in this

20 subtitle as a ‘‘designated State agency’’).

21 (3) COMPREHENSIVE REVIEW AND ANALYSIS.—

22 The plan shall describe the results of a comprehen23 sive review and analysis of the extent to which serv24 ices, supports, and other assistance are available to

25 individuals with developmental disabilities and their

26 families, and the extent of unmet needs for services,
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1 supports, and other assistance for those individuals

2 and their families, in the State. The results of the

3 comprehensive review and analysis shall include—

4 (A) a description of the services, supports,

5 and other assistance being provided to individ6 uals with developmental disabilities and their

7 families under other federally assisted State

8 programs, plans, and policies under which the

9 State operates and in which individuals with de10 velopmental disabilities are or may be eligible to

11 participate, including particularly programs re12 lating to the areas of emphasis, including—

13 (i) medical assistance, maternal and

14 child health care, services for children with

15 special health care needs, children’s mental

16 health services, comprehensive health and

17 mental health services, and institutional

18 care options;

19 (ii) job training, job placement, work20 site accommodation, and vocational reha21 bilitation, and other work assistance pro22 grams; and

23 (iii) social, child welfare, aging, inde24 pendent living, and rehabilitation and as-
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1 sistive technology services, and such other

2 services as the Secretary may specify;

3 (B) a description of the extent to which

4 agencies operating such other federally assisted

5 State programs, including activities authorized

6 under section 101 or 102 of the Assistive Tech7 nology Act of 1998 (29 U.S.C. 3011, 3012),

8 pursue interagency initiatives to improve and

9 enhance community services, individualized sup10 ports, and other forms of assistance for individ11 uals with developmental disabilities;

12 (C) an analysis of the extent to which com13 munity services and opportunities related to the

14 areas of emphasis directly benefit individuals

15 with developmental disabilities, especially with

16 regard to their ability to access and use services

17 provided in their communities, to participate in

18 opportunities, activities, and events offered in

19 their communities, and to contribute to commu20 nity life, identifying particularly—

21 (i) the degree of support for individ22 uals with developmental disabilities that

23 are attributable to either physical impair24 ment, mental impairment, or a combina25 tion of physical and mental impairments;
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1 (ii) criteria for eligibility for services,

2 including specialized services and special

3 adaptation of generic services provided by

4 agencies within the State, that may ex5 clude individuals with developmental dis6 abilities from receiving services described

7 in this clause;

8 (iii) the barriers that impede full par9 ticipation of members of unserved and un10 derserved groups of individuals with devel11 opmental disabilities and their families;

12 (iv) the availability of assistive tech13 nology, assistive technology services, or re14 habilitation technology, or information

15 about assistive technology, assistive tech16 nology services, or rehabilitation tech17 nology to individuals with developmental

18 disabilities;

19 (v) the numbers of individuals with

20 developmental disabilities on waiting lists

21 for services described in this subparagraph;

22 (vi) a description of the adequacy of

23 current resources and projected availability

24 of future resources to fund services de25 scribed in this subparagraph;
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1 (vii) a description of the adequacy of

2 health care and other services, supports,

3 and assistance that individuals with devel4 opmental disabilities who are in facilities

5 receive (based in part on each independent

6 review (pursuant to section 1902(a)(30)(C)

7 of the Social Security Act (42 U.S.C.

8 1396a(a)(30)(C))) of an Intermediate Care

9 Facility (Mental Retardation) within the

10 State, which the State shall provide to the

11 Council not later than 30 days after the

12 availability of the review); and

13 (viii) to the extent that information is

14 available, a description of the adequacy of

15 health care and other services, supports,

16 and assistance that individuals with devel17 opmental disabilities who are served

18 through home and community-based waiv19 ers (authorized under section 1915(c) of

20 the Social Security Act (42 U.S.C.

21 1396n(c))) receive;

22 (D) a description of how entities funded

23 under subtitles C and D, through interagency

24 agreements or other mechanisms, collaborated

25 with the entity funded under this subtitle in the
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1 State, each other, and other entities to con2 tribute to the achievement of the purpose of

3 this subtitle; and

4 (E) the rationale for the goals related to

5 advocacy, capacity building, and systemic

6 change to be undertaken by the Council to con7 tribute to the achievement of the purpose of

8 this subtitle.

9 (4) PLAN GOALS.—The plan shall focus on

10 Council efforts to bring about the purpose of this

11 subtitle, by—

12 (A) specifying 5-year goals, as developed

13 through data driven strategic planning, for ad14 vocacy, capacity building, and systemic change

15 related to the areas of emphasis, to be under16 taken by the Council, that—

17 (i) are derived from the unmet needs

18 of individuals with developmental disabil19 ities and their families identified under

20 paragraph (3); and

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

22 grant, to—

23 (I) establish or strengthen a pro24 gram for the direct funding of a State
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•HR 4920 IH

1 self-advocacy organization led by indi2 viduals with developmental disabilities;

3 (II) support opportunities for in4 dividuals with developmental disabil5 ities who are considered leaders to

6 provide leadership training to individ7 uals with developmental disabilities

8 who may become leaders; and

9 (III) support and expand partici10 pation of individuals with develop11 mental disabilities in cross-disability

12 and culturally diverse leadership coali13 tions; and

14 (B) for each year of the grant,

15 describing—

16 (i) the goals to be achieved through

17 the grant, which, beginning in fiscal year

18 2002, shall be consistent with applicable

19 indicators of progress described in section

20 104(a)(3);

21 (ii) the strategies to be used in achiev22 ing each goal; and

23 (iii) the method to be used to deter24 mine if each goal has been achieved.

25 (5) ASSURANCES.—
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1 (A) IN GENERAL.—The plan shall contain

2 or be supported by assurances and information

3 described in subparagraphs (B) through (N)

4 that are satisfactory to the Secretary.

5 (B) USE OF FUNDS.—With respect to the

6 funds paid to the State under section 122, the

7 plan shall provide assurances that—

8 (i) not less than 70 percent of such

9 funds will be expended for activities related

10 to the goals described in paragraph (4);

11 (ii) such funds will contribute to the

12 achievement of the purpose of this subtitle

13 in various political subdivisions of the

14 State;

15 (iii) such funds will be used to supple16 ment, and not supplant, the non-Federal

17 funds that would otherwise be made avail18 able for the purposes for which the funds

19 paid under section 122 are provided;

20 (iv) such funds will be used to com21 plement and augment rather than dupli22 cate or replace services for individuals with

23 developmental disabilities and their fami24 lies who are eligible for Federal assistance

25 under other State programs;
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•HR 4920 IH

1 (v) part of such funds will be made

2 available by the State to public or private

3 entities;

4 (vi) at the request of any State, a por5 tion of such funds provided to such State

6 under this subtitle for any fiscal year shall

be available to pay up to 1 7 ⁄2 (or the entire

8 amount if the Council is the designated

9 State agency) of the expenditures found to

10 be necessary by the Secretary for the prop11 er and efficient exercise of the functions of

12 the designated State agency, except that

13 not more than 5 percent of such funds pro14 vided to such State for any fiscal year, or

15 $50,000, whichever is less, shall be made

16 available for total expenditures for such

17 purpose by the designated State agency;

18 and

19 (vii) not more than 20 percent of such

20 funds will be allocated to the designated

21 State agency for service demonstrations by

22 such agency that—

23 (I) contribute to the achievement

24 of the purpose of this subtitle; and
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•HR 4920 IH

1 (II) are explicitly authorized by

2 the Council.

3 (C) STATE FINANCIAL PARTICIPATION.—

4 The plan shall provide assurances that there

5 will be reasonable State financial participation

6 in the cost of carrying out the plan.

7 (D) CONFLICT OF INTEREST.—The plan

8 shall provide an assurance that no member of

9 such Council will cast a vote on any matter that

10 would provide direct financial benefit to the

11 member or otherwise give the appearance of a

12 conflict of interest.

13 (E) URBAN AND RURAL POVERTY

14 AREAS.—The plan shall provide assurances that

15 special financial and technical assistance will be

16 given to organizations that provide community

17 services, individualized supports, and other

18 forms of assistance to individuals with develop19 mental disabilities who live in areas designated

20 as urban or rural poverty areas.

21 (F) PROGRAM ACCESSIBILITY STAND22 ARDS.—The plan shall provide assurances that

23 programs, projects, and activities funded under

24 the plan, and the buildings in which such pro25 grams, projects, and activities are operated, will
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•HR 4920 IH

1 meet standards prescribed by the Secretary in

2 regulations and all applicable Federal and State

3 accessibility standards, including accessibility

4 requirements of the Americans with Disabilities

5 Act of 1990 (42 U.S.C. 12101 et seq.), section

6 508 of the Rehabilitation Act of 1973 (29

7 U.S.C. 794d), and the Fair Housing Act (42

8 U.S.C. 3601 et seq.).

9 (G) INDIVIDUALIZED SERVICES.—The plan

10 shall provide assurances that any direct services

11 provided to individuals with developmental dis12 abilities and funded under the plan will be pro13 vided in an individualized manner, consistent

14 with the unique strengths, resources, priorities,

15 concerns, abilities, and capabilities of such indi16 vidual.

17 (H) HUMAN RIGHTS.—The plan shall pro18 vide assurances that the human rights of the

19 individuals with developmental disabilities (es20 pecially individuals without familial protection)

21 who are receiving services under programs as22 sisted under this subtitle will be protected con23 sistent with section 109 (relating to rights of

24 individuals with developmental disabilities).
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•HR 4920 IH

1 (I) MINORITY PARTICIPATION.—The plan

2 shall provide assurances that the State has

3 taken affirmative steps to assure that participa4 tion in programs funded under this subtitle is

5 geographically representative of the State, and

6 reflects the diversity of the State with respect

7 to race and ethnicity.

8 (J) EMPLOYEE PROTECTIONS.—The plan

9 shall provide assurances that fair and equitable

10 arrangements (as determined by the Secretary

11 after consultation with the Secretary of Labor)

12 will be provided to protect the interests of em13 ployees affected by actions taken under the plan

14 to provide community living activities, including

15 arrangements designed to preserve employee

16 rights and benefits and provide training and re17 training of such employees where necessary,

18 and arrangements under which maximum ef19 forts will be made to guarantee the employment

20 of such employees.

21 (K) STAFF ASSIGNMENTS.—The plan shall

22 provide assurances that the staff and other per23 sonnel of the Council, while working for the

24 Council, will be responsible solely for assisting

25 the Council in carrying out the duties of the
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•HR 4920 IH

1 Council under this subtitle and will not be as2 signed duties by the designated State agency, or

3 any other agency, office, or entity of the State.

4 (L) NONINTERFERENCE.—The plan shall

5 provide assurances that the designated State

6 agency, and any other agency, office, or entity

7 of the State, will not interfere with the advo8 cacy, capacity building, and systemic change ac9 tivities, budget, personnel, State plan develop10 ment, or plan implementation of the Council,

11 except that the designated State agency shall

12 have the authority necessary to carry out the

13 responsibilities described in section 125(d)(3).

14 (M) STATE QUALITY ASSURANCE.—The

15 plan shall provide assurances that the Council

16 will participate in the planning, design or rede17 sign, and monitoring of State quality assurance

18 systems that affect individuals with develop19 mental disabilities.

20 (N) OTHER ASSURANCES.—The plan shall

21 contain such additional information and assur22 ances as the Secretary may find necessary to

23 carry out the provisions (including the purpose)

24 of this subtitle.
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•HR 4920 IH

1 (d) PUBLIC INPUT AND REVIEW, SUBMISSION, AND

2 APPROVAL.—

3 (1) PUBLIC INPUT AND REVIEW.—The plan

4 shall be based on public input. The Council shall

5 make the plan available for public review and com6 ment, after providing appropriate and sufficient no7 tice in accessible formats of the opportunity for such

8 review and comment. The Council shall revise the

9 plan to take into account and respond to significant

10 comments.

11 (2) CONSULTATION WITH THE DESIGNATED

12 STATE AGENCY.—Before the plan is submitted to

13 the Secretary, the Council shall consult with the des14 ignated State agency to ensure that the State plan

15 is consistent with State law and to obtain appro16 priate State plan assurances.

17 (3) PLAN APPROVAL.—The Secretary shall ap18 prove any State plan and, as appropriate, amend19 ments of such plan that comply with the provisions

20 of subsections (a), (b), and (c) and this subsection.

21 The Secretary may take final action to disapprove a

22 State plan after providing reasonable notice and an

23 opportunity for a hearing to the State.
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•HR 4920 IH

1 SEC. 125. STATE COUNCILS ON DEVELOPMENTAL DISABIL2 ITIES AND DESIGNATED STATE AGENCIES.

3 (a) IN GENERAL.—Each State that receives assist4 ance under this subtitle shall establish and maintain a

5 Council to undertake advocacy, capacity building, and sys6 temic change activities (consistent with subsections (b)

7 and (c) of section 101) that contribute to a coordinated,

8 consumer- and family-centered, consumer- and family-di9 rected, comprehensive system of community services, indi10 vidualized supports, and other forms of assistance that

11 contribute to the achievement of the purpose of this sub12 title. The Council shall have the authority to fulfill the

13 responsibilities described in subsection (c).

14 (b) COUNCIL MEMBERSHIP.—

15 (1) COUNCIL APPOINTMENTS.—

16 (A) IN GENERAL.—The members of the

17 Council of a State shall be appointed by the

18 Governor of the State from among the residents

19 of that State.

20 (B) RECOMMENDATIONS.—The Governor

21 shall select members of the Council, at the dis22 cretion of the Governor, after soliciting rec23 ommendations from organizations representing

24 a broad range of individuals with developmental

25 disabilities and individuals interested in individ26 uals with developmental disabilities, including
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•HR 4920 IH

1 the non-State agency members of the Council.

2 The Council may, at the initiative of the Coun3 cil, or on the request of the Governor, coordi4 nate Council and public input to the Governor

5 regarding all recommendations.

6 (C) REPRESENTATION.—The membership

7 of the Council shall be geographically represent8 ative of the State and reflect the diversity of

9 the State with respect to race and ethnicity.

10 (2) MEMBERSHIP ROTATION.—The Governor

11 shall make appropriate provisions to rotate the mem12 bership of the Council. Such provisions shall allow

13 members to continue to serve on the Council until

14 such members’ successors are appointed. The Coun15 cil shall notify the Governor regarding membership

16 requirements of the Council, and shall notify the

17 Governor when vacancies on the Council remain un18 filled for a significant period of time.

19 (3) REPRESENTATION OF INDIVIDUALS WITH

20 DEVELOPMENTAL DISABILITIES.—Not less than 60

21 percent of the membership of each Council shall con22 sist of individuals who are—

23 (A)(i) individuals with developmental dis24 abilities;
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•HR 4920 IH

1 (ii) parents or guardians of children with

2 developmental disabilities; or

3 (iii) immediate relatives or guardians of

4 adults with mentally impairing developmental

5 disabilities who cannot advocate for themselves;

6 and

7 (B) not employees of a State agency that

8 receives funds or provides services under this

9 subtitle, and who are not managing employees

10 (as defined in section 1126(b) of the Social Se11 curity Act (42 U.S.C. 1320a–5(b)) of any other

12 entity that receives funds or provides services

13 under this subtitle.

14 (4) REPRESENTATION OF AGENCIES AND ORGA15 NIZATIONS.—

16 (A) IN GENERAL.—Each Council shall

17 include—

18 (i) representatives of relevant State

19 entities, including—

20 (I) State entities that administer

21 funds provided under Federal laws re22 lated to individuals with disabilities,

23 including the Rehabilitation Act of

24 1973 (29 U.S.C. 701 et seq.), the In25 dividuals with Disabilities Education
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•HR 4920 IH

1 Act (20 U.S.C. 1400 et seq.), the

2 Older Americans Act of 1965 (42

3 U.S.C. 3001 et seq.), and titles V and

4 XIX of the Social Security Act (42

5 U.S.C. 701 et seq. and 1396 et seq.);

6 (II) Centers in the State; and

7 (III) the State protection and ad8 vocacy system; and

9 (ii) representatives, at all times,

10 of local and nongovernmental agen11 cies, and private nonprofit groups

12 concerned with services for individuals

13 with developmental disabilities in the

14 State in which such agencies and

15 groups are located.

16 (B) AUTHORITY AND LIMITATIONS.—The

17 representatives described in subparagraph (A)

18 shall—

19 (i) have sufficient authority to engage

20 in policy planning and implementation on

21 behalf of the department, agency, or pro22 gram such representatives represent; and

23 (ii) recuse themselves from any dis24 cussion of grants or contracts for which

25 such representatives’ departments, agen-
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•HR 4920 IH

1 cies, or programs are grantees, contrac2 tors, or applicants and comply with the

3 conflict of interest assurance requirement

4 under section 124(c)(5)(D).

5 (5) COMPOSITION OF MEMBERSHIP WITH DE6 VELOPMENTAL DISABILITIES.—Of the members of

7 the Council described in paragraph (3)—

(A) 1 8 ⁄3 shall be individuals with develop9 mental disabilities described in paragraph

10 (3)(A)(i);

(B) 1 11 ⁄3 shall be parents or guardians of

12 children with developmental disabilities de13 scribed in paragraph (3)(A)(ii), or immediate

14 relatives or guardians of adults with develop15 mental disabilities described in paragraph

16 (3)(A)(iii); and

(C) 1 17 ⁄3 shall be a combination of individ18 uals described in paragraph (3)(A).

19 (6) INSTITUTIONALIZED INDIVIDUALS.—

20 (A) IN GENERAL.—Of the members of the

21 Council described in paragraph (5), at least 1

22 shall be an immediate relative or guardian of an

23 individual with a developmental disability who

24 resides or previously resided in an institution or

25 shall be an individual with a developmental dis-
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•HR 4920 IH

1 ability who resides or previously resided in an

2 institution.

3 (B) LIMITATION.—Subparagraph (A) shall

4 not apply with respect to a State if such an in5 dividual does not reside in that State.

6 (c) COUNCIL RESPONSIBILITIES.—

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

8 members, staff, consultants, contractors, or sub9 grantees, shall have the responsibilities described in

10 paragraphs (2) through (10).

11 (2) ADVOCACY, CAPACITY BUILDING, AND SYS12 TEMIC CHANGE ACTIVITIES.—The Council shall

13 serve as an advocate for individuals with develop14 mental disabilities and conduct or support programs,

15 projects, and activities that carry out the purpose of

16 this subtitle.

17 (3) EXAMINATION OF GOALS.—At the end of

18 each grant year, each Council shall—

19 (A) determine the extent to which each

20 goal of the Council was achieved for that year;

21 (B) determine to the extent that each goal

22 was not achieved, the factors that impeded the

23 achievement;
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•HR 4920 IH

1 (C) determine needs that require amend2 ment of the 5-year strategic State plan required

3 under section 124;

4 (D) separately determine the information

5 on the self-advocacy goal described in section

6 124(c)(4)(A)(ii); and

7 (E) determine customer satisfaction with

8 Council supported or conducted activities.

9 (4) STATE PLAN DEVELOPMENT.—The Council

10 shall develop the State plan and submit the State

11 plan to the Secretary after consultation with the des12 ignated State agency under the State plan. Such

13 consultation shall be solely for the purposes of ob14 taining State assurances and ensuring consistency of

15 the plan with State law.

16 (5) STATE PLAN IMPLEMENTATION.—

17 (A) IN GENERAL.—The Council shall im18 plement the State plan by conducting and sup19 porting advocacy, capacity building, and sys20 temic change activities such as those described

21 in subparagraphs (B) through (L).

22 (B) OUTREACH.—The Council may sup23 port and conduct outreach activities to identify

24 individuals with developmental disabilities and

25 their families who otherwise might not come to
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•HR 4920 IH

1 the attention of the Council and assist and en2 able the individuals and families to obtain serv3 ices, individualized supports, and other forms of

4 assistance, including access to special adapta5 tion of generic community services or special6 ized services.

7 (C) TRAINING.—The Council may support

8 and conduct training for persons who are indi9 viduals with developmental disabilities, their

10 families, and personnel (including professionals,

11 paraprofessionals, students, volunteers, and

12 other community members) to enable such per13 sons to obtain access to, or to provide, commu14 nity services, individualized supports, and other

15 forms of assistance, including special adapta16 tion of generic community services or special17 ized services for individuals with developmental

18 disabilities and their families. To the extent

19 that the Council supports or conducts training

20 activities under this subparagraph, such activi21 ties shall contribute to the achievement of the

22 purpose of this subtitle.

23 (D) TECHNICAL ASSISTANCE.—The Coun24 cil may support and conduct technical assist25 ance activities to assist public and private enti-
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•HR 4920 IH

1 ties to contribute to the achievement of the pur2 pose of this subtitle.

3 (E) SUPPORTING AND EDUCATING COMMU4 NITIES.—The Council may support and conduct

5 activities to assist neighborhoods and commu6 nities to respond positively to individuals with

7 developmental disabilities and their families—

8 (i) by encouraging local networks to

9 provide informal and formal supports;

10 (ii) through education; and

11 (iii) by enabling neighborhoods and

12 communities to offer such individuals and

13 their families access to and use of services,

14 resources, and opportunities.

15 (F) INTERAGENCY COLLABORATION AND

16 COORDINATION.—The Council may support and

17 conduct activities to promote interagency col18 laboration and coordination to better serve, sup19 port, assist, or advocate for individuals with de20 velopmental disabilities and their families.

21 (G) COORDINATION WITH RELATED COUN22 CILS, COMMITTEES, AND PROGRAMS.—The

23 Council may support and conduct activities to

24 enhance coordination of services with—
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•HR 4920 IH

1 (i) other councils, entities, or commit2 tees, authorized by Federal or State law,

3 concerning individuals with disabilities

4 (such as the State interagency coordi5 nating council established under subtitle C

6 of the Individuals with Disabilities Edu7 cation Act (20 U.S.C. 1431 et seq.), the

8 State Rehabilitation Council and the State9 wide Independent Living Council estab10 lished under the Rehabilitation Act of

11 1973 (29 U.S.C. 701 et seq.), the State

12 mental health planning council established

13 under subtitle B of title XIX of the Public

14 Health Service Act (42 U.S.C. 300x–1 et

15 seq.), and the activities authorized under

16 section 101 or 102 of the Assistive Tech17 nology Act of 1998 (29 U.S.C. 3011,

18 3012), and entities carrying out other

19 similar councils, entities, or committees);

20 (ii) parent training and information

21 centers under part D of the Individuals

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

23 1451 et seq.) and other entities carrying

24 out federally funded projects that assist

25 parents of children with disabilities; and
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1 (iii) other groups interested in advo2 cacy, capacity building, and systemic

3 change activities to benefit individuals with

4 disabilities.

5 (H) BARRIER ELIMINATION, SYSTEMS DE6 SIGN AND REDESIGN.—The Council may sup7 port and conduct activities to eliminate barriers

8 to assess and use of community services by in9 dividuals with developmental disabilities, en10 hance systems design and redesign, and en11 hance citizen participation to address issues

12 identified in the State plan.

13 (I) COALITION DEVELOPMENT AND CIT14 IZEN PARTICIPATION.—The Council may sup15 port and conduct activities to educate the public

16 about the capabilities, preferences, and needs of

17 individuals with developmental disabilities and

18 their families and to develop and support coali19 tions that support the policy agenda of the

20 Council, including training in self-advocacy,

21 education of policymakers, and citizen leader22 ship skills.

23 (J) INFORMING POLICYMAKERS.—The

24 Council may support and conduct activities to

25 provide information to policymakers by sup-
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•HR 4920 IH

1 porting and conducting studies and analyses,

2 gathering information, and developing and dis3 seminating model policies and procedures, infor4 mation, approaches, strategies, findings, conclu5 sions, and recommendations. The Council may

6 provide the information directly to Federal,

7 State, and local policymakers, including Con8 gress, the Federal executive branch, the Gov9 ernors, State legislatures, and State agencies,

10 in order to increase the ability of such policy11 makers to offer opportunities and to enhance or

12 adapt generic services to meet the needs of, or

13 provide specialized services to, individuals with

14 developmental disabilities and their families.

15 (K) DEMONSTRATION OF NEW AP16 PROACHES TO SERVICES AND SUPPORTS.—

17 (i) IN GENERAL.—The Council may

18 support and conduct, on a time-limited

19 basis, activities to demonstrate new ap20 proaches to serving individuals with devel21 opmental disabilities that are a part of an

22 overall strategy for systemic change. The

23 strategy may involve the education of pol24 icymakers and the public about how to de25 liver effectively, to individuals with devel-
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•HR 4920 IH

1 opmental disabilities and their families,

2 services, supports, and assistance that con3 tribute to the achievement of the purpose

4 of this subtitle.

5 (ii) SOURCES OF FUNDING.—The

6 Council may carry out this subparagraph

7 by supporting and conducting demonstra8 tion activities through sources of funding

9 other than funding provided under this

10 subtitle, and by assisting entities con11 ducting demonstration activities to develop

12 strategies for securing funding from other

13 sources.

14 (L) OTHER ACTIVITIES.—The Council may

15 support and conduct other advocacy, capacity

16 building, and systemic change activities to pro17 mote the development of a coordinated,

18 consumer- and family-centered, consumer- and

19 family-directed, comprehensive system of com20 munity services, individualized supports, and

21 other forms of assistance that contribute to the

22 achievement of the purpose of this subtitle.

23 (6) REVIEW OF DESIGNATED STATE AGENCY.—

24 The Council shall periodically review the designated

25 State agency and activities carried out under this
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•HR 4920 IH

1 subtitle by the designated State agency and make

2 any recommendations for change to the Governor.

3 (7) REPORTS.—Beginning in fiscal year 2002,

4 the Council shall annually prepare and transmit to

5 the Secretary a report. Each report shall be in a

6 form prescribed by the Secretary by regulation

7 under section 104(b). Each report shall contain in8 formation about the progress made by the Council in

9 achieving the goals of the Council (as specified in

10 section 124(c)(4)), including—

11 (A) a description of the extent to which the

12 goals were achieved;

13 (B) a description of the strategies that

14 contributed to achieving the goals;

15 (C) to the extent to which the goals were

16 not achieved, a description of factors that im17 peded the achievement;

18 (D) separate information on the self-advo19 cacy goal described in section 124(c)(4)(A)(ii);

20 (E)(i) as appropriate, an update on the re21 sults of the comprehensive review and analysis

22 described in section 124(c)(3); and

23 (ii) information on consumer satisfaction

24 with Council supported or conducted activities;
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1 (F)(i) a description of the adequacy of

2 health care and other services, supports, and

3 assistance that individuals with developmental

4 disabilities in Intermediate Care Facilities

5 (Mental Retardation) receive; and

6 (ii) a description of the adequacy of health

7 care and other services, supports, and assist8 ance that individuals with developmental dis9 abilities served through home and community10 based waivers (authorized under section

11 1915(c) of the Social Security Act (42 U.S.C.

12 1396n(c)) receive;

13 (G) an accounting of the manner in which

14 funds paid to the State under this subtitle for

15 a fiscal year were expended;

16 (H) a description of—

17 (i) resources made available to carry

18 out activities to assist individuals with de19 velopmental disabilities that are directly at20 tributable to Council actions; and

21 (ii) resources made available for such

22 activities that are undertaken by the Coun23 cil in collaboration with other entities; and

24 (I) a description of the method by which

25 the Council will widely disseminate the annual
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•HR 4920 IH

1 report to affected constituencies and the general

2 public and will assure that the report is avail3 able in accessible formats.

4 (8) BUDGET.—Each Council shall prepare, ap5 prove, and implement a budget using amounts paid

6 to the State under this subtitle to fund and imple7 ment all programs, projects, and activities carried

8 out under this subtitle, including—

9 (A)(i) conducting such hearings and fo10 rums as the Council may determine to be nec11 essary to carry out the duties of the Council;

12 and

13 (ii) as determined in Council policy—

14 (I) reimbursing members of the Coun15 cil for reasonable and necessary expenses

16 (including expenses for child care and per17 sonal assistance services) for attending

18 Council meetings and performing Council

19 duties;

20 (II) paying a stipend to a member of

21 the Council, if such member is not em22 ployed or must forfeit wages from other

23 employment, to attend Council meetings

24 and perform other Council duties;
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•HR 4920 IH

1 (III) supporting Council member and

2 staff travel to authorized training and

3 technical assistance activities including in4 service training and leadership develop5 ment activities; and

6 (IV) carrying out appropriate subcon7 tracting activities;

8 (B) hiring and maintaining such numbers

9 and types of staff (qualified by training and ex10 perience) and obtaining the services of such

11 professional, consulting, technical, and clerical

12 staff (qualified by training and experience),

13 consistent with State law, as the Council deter14 mines to be necessary to carry out the functions

15 of the Council under this subtitle, except that

16 such State shall not apply hiring freezes, reduc17 tions in force, prohibitions on travel, or other

18 policies to the staff of the Council, to the extent

19 that such policies would impact the staff or

20 functions funded with Federal funds, or would

21 prevent the Council from carrying out the func22 tions of the Council under this subtitle; and

23 (C) directing the expenditure of funds for

24 grants, contracts, interagency agreements that

25 are binding contracts, and other activities au-
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•HR 4920 IH

1 thorized by the State plan approved under sec2 tion 124.

3 (9) STAFF HIRING AND SUPERVISION.—The

4 Council shall, consistent with State law, recruit and

5 hire a Director of the Council, should the position of

6 Director become vacant, and supervise and annually

7 evaluate the Director. The Director shall hire, super8 vise, and annually evaluate the staff of the Council.

9 Council recruitment, hiring, and dismissal of staff

10 shall be conducted in a manner consistent with Fed11 eral and State nondiscrimination laws. Dismissal of

12 personnel shall be conducted in a manner consistent

13 with State law and personnel policies.

14 (10) STAFF ASSIGNMENTS.—The staff of the

15 Council, while working for the Council, shall be re16 sponsible solely for assisting the Council in carrying

17 out the duties of the Council under this subtitle and

18 shall not be assigned duties by the designated State

19 agency or any other agency or entity of the State.

20 (11) CONSTRUCTION.—Nothing in this title

21 shall be construed to authorize a Council to direct,

22 control, or exercise any policymaking authority or

23 administrative authority over any program assisted

24 under the Rehabilitation Act of 1973 (29 U.S.C.
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•HR 4920 IH

1 701 et seq.) or the Individuals with Disabilities Edu2 cation Act (20 U.S.C. 1400 et seq.).

3 (d) DESIGNATED STATE AGENCY.—

4 (1) IN GENERAL.—Each State that receives as5 sistance under this subtitle shall designate a State

6 agency that shall, on behalf of the State, provide

7 support to the Council. After the date of enactment

8 of the Developmental Disabilities Assistance and Bill

9 of Rights Act Amendments of 1994 (Public Law

10 103–230), any designation of a State agency under

11 this paragraph shall be made in accordance with the

12 requirements of this subsection.

13 (2) DESIGNATION.—

14 (A) TYPE OF AGENCY.—Except as pro15 vided in this subsection, the designated State

16 agency shall be—

17 (i) the Council if such Council may be

18 the designated State agency under the laws

19 of the State;

20 (ii) a State agency that does not pro21 vide or pay for services for individuals with

22 developmental disabilities; or

23 (iii) a State office, including the im24 mediate office of the Governor of the State

25 or a State planning office.
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1 (B) CONDITIONS FOR CONTINUATION OF

2 STATE SERVICE AGENCY DESIGNATION.—

3 (i) DESIGNATION BEFORE ENACT4 MENT.—If a State agency that provides or

5 pays for services for individuals with devel6 opmental disabilities was a designated

7 State agency for purposes of part B of the

8 Developmental Disabilities Assistance and

9 Bill of Rights Act on the date of enact10 ment of the Developmental Disabilities As11 sistance and Bill of Rights Act Amend12 ments of 1994, and the Governor of the

13 State (or the legislature, where appropriate

14 and in accordance with State law) deter15 mines prior to June 30, 1994, not to

16 change the designation of such agency,

17 such agency may continue to be a des18 ignated State agency for purposes of this

19 subtitle.

20 (ii) CRITERIA FOR CONTINUED DES21 IGNATION.—The determination, at the dis22 cretion of the Governor (or the legislature,

23 as the case may be), shall be made after—

24 (I) the Governor has considered

25 the comments and recommendations
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1 of the general public and a majority

2 of the non-State agency members of

3 the Council with respect to the des4 ignation of such State agency; and

5 (II) the Governor (or the legisla6 ture, as the case may be) has made an

7 independent assessment that the des8 ignation of such agency will not inter9 fere with the budget, personnel, prior10 ities, or other action of the Council,

11 and the ability of the Council to serve

12 as an independent advocate for indi13 viduals with developmental disabilities.

14 (C) REVIEW OF DESIGNATION.—The

15 Council may request a review of and change in

16 the designation of the designated State agency

17 by the Governor (or the legislature, as the case

18 may be). The Council shall provide documenta19 tion concerning the reason the Council desires

20 a change to be made and make a recommenda21 tion to the Governor (or the legislature, as the

22 case may be) regarding a preferred designated

23 State agency.

24 (D) APPEAL OF DESIGNATION.—After the

25 review is completed under subparagraph (C), a
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1 majority of the non-State agency members of

2 the Council may appeal to the Secretary for a

3 review of and change in the designation of the

4 designated State agency if the ability of the

5 Council to serve as an independent advocate is

6 not assured because of the actions or inactions

7 of the designated State agency.

8 (3) RESPONSIBILITIES.—

9 (A) IN GENERAL.—The designated State

10 agency shall, on behalf of the State, have the

11 responsibilities described in subparagraphs (B)

12 through (G).

13 (B) SUPPORT SERVICES.—The designated

14 State agency shall provide required assurances

15 and support services as requested by and nego16 tiated with the Council.

17 (C) FISCAL RESPONSIBILITIES.—The des18 ignated State agency shall—

19 (i) receive, account for, and disburse

20 funds under this subtitle based on the

21 State plan required in section 124; and

22 (ii) provide for such fiscal control and

23 fund accounting procedures as may be nec24 essary to assure the proper disbursement
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1 of, and accounting for, funds paid to the

2 State under this subtitle.

3 (D) RECORDS, ACCESS, AND FINANCIAL

4 REPORTS.—The designated State agency shall

5 keep and provide access to such records as the

6 Secretary and the Council may determine to be

7 necessary. The designated State agency, if

8 other than the Council, shall provide timely fi9 nancial reports at the request of the Council re10 garding the status of expenditures, obligations,

11 and liquidation by the agency or the Council,

12 and the use of the Federal and non-Federal

13 shares described in section 126, by the agency

14 or the Council.

15 (E) NON-FEDERAL SHARE.—The des16 ignated State agency, if other than the Council,

17 shall provide the required non-Federal share de18 scribed in section 126(c).

19 (F) ASSURANCES.—The designated State

20 agency shall assist the Council in obtaining the

21 appropriate State plan assurances and in ensur22 ing that the plan is consistent with State law.

23 (G) MEMORANDUM OF UNDERSTANDING.—

24 On the request of the Council, the designated

25 State agency shall enter into a memorandum of
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1 understanding with the Council delineating the

2 roles and responsibilities of the designated

3 State agency.

4 (4) USE OF FUNDS FOR DESIGNATED STATE

5 AGENCY RESPONSIBILITIES.—

6 (A) CONDITION FOR FEDERAL FUNDING.—

7 (i) IN GENERAL.—The Secretary shall

8 provide amounts to a State under section

9 124(c)(5)(B)(vi) for a fiscal year only if

10 the State expends an amount from State

11 sources for carrying out the responsibilities

12 of the designated State agency under para13 graph (3) for the fiscal year that is not

14 less than the total amount the State ex15 pended from such sources for carrying out

16 similar responsibilities for the previous fis17 cal year.

18 (ii) EXCEPTION.—Clause (i) shall not

19 apply in a year in which the Council is the

20 designated State agency.

21 (B) SUPPORT SERVICES PROVIDED BY

22 OTHER AGENCIES.—With the agreement of the

23 designated State agency, the Council may use

24 or contract with agencies other than the des-
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1 ignated State agency to perform the functions

2 of the designated State agency.

3 SEC. 126. FEDERAL AND NON-FEDERAL SHARE.

4 (a) AGGREGATE COST.—

5 (1) IN GENERAL.—Except as provided in para6 graphs (2) and (3), the Federal share of the cost of

7 all projects in a State supported by an allotment to

8 the State under this subtitle may not be more than

9 75 percent of the aggregate necessary cost of such

10 projects, as determined by the Secretary.

11 (2) URBAN OR RURAL POVERTY AREAS.—In the

12 case of projects whose activities or products target

13 individuals with developmental disabilities who live

14 in urban or rural poverty areas, as determined by

15 the Secretary, the Federal share of the cost of all

16 such projects may not be more than 90 percent of

17 the aggregate necessary cost of such projects, as de18 termined by the Secretary.

19 (3) STATE PLAN ACTIVITIES.—In the case of

20 projects undertaken by the Council or Council staff

21 to implement State plan activities, the Federal share

22 of the cost of all such projects may be not more than

23 100 percent of the aggregate necessary cost of such

24 activities.
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1 (b) NONDUPLICATION.—In determining the amount

2 of any State’s Federal share of the cost of such projects

3 incurred by such State under a State plan approved under

4 section 124, the Secretary shall not consider—

5 (1) any portion of such cost that is financed by

6 Federal funds provided under any provision of law

7 other than section 122; and

8 (2) the amount of any non-Federal funds re9 quired to be expended as a condition of receipt of

10 the Federal funds described in paragraph (1).

11 (c) NON-FEDERAL SHARE.—

12 (1) IN-KIND CONTRIBUTIONS.—The non-Fed13 eral share of the cost of any project supported by an

14 allotment under this subtitle may be provided in

15 cash or in kind, fairly evaluated, including plant,

16 equipment, or services.

17 (2) CONTRIBUTIONS OF POLITICAL SUBDIVI18 SIONS AND PUBLIC OR PRIVATE ENTITIES.—

19 (A) IN GENERAL.—Contributions to

20 projects by a political subdivision of a State or

21 by a public or private entity under an agree22 ment with the State shall, subject to such limi23 tations and conditions as the Secretary may by

24 regulation prescribe under section 104(b), be

25 considered to be contributions by such State, in
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1 the case of a project supported under this sub2 title.

3 (B) STATE CONTRIBUTIONS.—State con4 tributions, including contributions by the des5 ignated State agency to provide support services

6 to the Council pursuant to section 125(d)(4),

7 may be counted as part of such State’s non8 Federal share of the cost of projects supported

9 under this subtitle.

10 (3) VARIATIONS OF THE NON-FEDERAL

11 SHARE.—The non-Federal share required of each re12 cipient of a grant from a Council under this subtitle

13 may vary.

14 SEC. 127. WITHHOLDING OF PAYMENTS FOR PLANNING, AD15 MINISTRATION, AND SERVICES.

16 Whenever the Secretary, after providing reasonable

17 notice and an opportunity for a hearing to the Council

18 and the designated State agency, finds that—

19 (1) the Council or agency has failed to comply

20 substantially with any of the provisions required by

21 section 124 to be included in the State plan, particu22 larly provisions required by paragraphs (4)(A) and

23 (5)(B)(vii) of section 124(c), or with any of the pro24 visions required by section 125(b)(3); or
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1 (2) the Council or agency has failed to comply

2 substantially with any regulations of the Secretary

3 that are applicable to this subtitle,

4 the Secretary shall notify such Council and agency that

5 the Secretary will not make further payments to the State

6 under section 122 (or, in the discretion of the Secretary,

7 that further payments to the State under section 122 for

8 activities for which there is such failure), until the Sec9 retary is satisfied that there will no longer be such failure.

10 Until the Secretary is so satisfied, the Secretary shall

11 make no further payments to the State under section 122,

12 or shall limit further payments under section 122 to such

13 State to activities for which there is no such failure.

14 SEC. 128. APPEALS BY STATES.

15 (a) APPEAL.—If any State is dissatisfied with the

16 Secretary’s action under section 124(d)(3) or 127, such

17 State may appeal to the United States court of appeals

18 for the circuit in which such State is located, by filing a

19 petition with such court not later than 60 days after such

20 action.

21 (b) FILING.—The clerk of the court shall transmit

22 promptly a copy of the petition to the Secretary, or any

23 officer designated by the Secretary for that purpose. The

24 Secretary shall file promptly with the court the record of

25 the proceedings on which the Secretary based the action,
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1 as provided in section 2112 of title 28, United States

2 Code.

3 (c) JURISDICTION.—Upon the filing of the petition,

4 the court shall have jurisdiction to affirm the action of

5 the Secretary or to set the action aside, in whole or in

6 part, temporarily or permanently. Until the filing of the

7 record, the Secretary may modify or set aside the order

8 of the Secretary relating to the action.

9 (d) FINDINGS AND REMAND.—The findings of the

10 Secretary about the facts, if supported by substantial evi11 dence, shall be conclusive, but the court, for good cause

12 shown, may remand the case involved to the Secretary for

13 further proceedings to take further evidence. On remand,

14 the Secretary may make new or modified findings of fact

15 and may modify the previous action of the Secretary, and

16 shall file with the court the record of the further pro17 ceedings. Such new or modified findings of fact shall like18 wise be conclusive if supported by substantial evidence.

19 (e) FINALITY.—The judgment of the court affirming

20 or setting aside, in whole or in part, any action of the

21 Secretary shall be final, subject to review by the Supreme

22 Court of the United States upon certiorari or certification

23 as provided in section 1254 of title 28, United States

24 Code.
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1 (f) EFFECT.—The commencement of proceedings

2 under this section shall not, unless so specifically ordered

3 by a court, operate as a stay of the Secretary’s action.

4 SEC. 129. AUTHORIZATION OF APPROPRIATIONS.

5 (a) FUNDING FOR STATE ALLOTMENTS.—Except as

6 described in subsection (b), there are authorized to be ap7 propriated for allotments under section 122 $76,000,000

8 for fiscal year 2001 and such sums as may be necessary

9 for each of fiscal years 2002 through 2007.

10 (b) RESERVATION FOR TECHNICAL ASSISTANCE.—

11 (1) LOWER APPROPRIATION YEARS.—For any

12 fiscal year for which the amount appropriated under

13 subsection (a) is less than $76,000,000, the Sec14 retary shall reserve funds in accordance with section

15 163(c) to provide technical assistance to entities

16 funded under this subtitle.

17 (2) HIGHER APPROPRIATION YEARS.—For any

18 fiscal year for which the amount appropriated under

19 subsection (a) is not less than $76,000,000, the Sec20 retary shall reserve not less than $300,000 and not

21 more than 1 percent of the amount appropriated

22 under subsection (a) to provide technical assistance

23 to entities funded under this subtitle.
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1 Subtitle C—Protection and

2 Advocacy of Individual Rights

3 SEC. 141. PURPOSE.

4 The purpose of this subtitle is to provide for allot5 ments to support a protection and advocacy system (re6 ferred to in this subtitle as a ‘‘system’’) in each State to

7 protect the legal and human rights of individuals with de8 velopmental disabilities in accordance with this subtitle.

9 SEC. 142. ALLOTMENTS AND PAYMENTS.

10 (a) ALLOTMENTS.—

11 (1) IN GENERAL.—To assist States in meeting

12 the requirements of section 143(a), the Secretary

13 shall allot to the States the amounts appropriated

14 under section 145 and not reserved under paragraph

15 (6). Allotments and reallotments of such sums shall

16 be made on the same basis as the allotments and re17 allotments are made under subsections (a)(1)(A) and

18 (e) of section 122, except as provided in paragraph

19 (2).

20 (2) MINIMUM ALLOTMENTS.—In any case in

21 which—

22 (A) the total amount appropriated under

23 section 145 for a fiscal year is not less than

24 $20,000,000, the allotment under paragraph

25 (1) for such fiscal year—
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1 (i) to each of American Samoa,

2 Guam, the United States Virgin Islands,

3 and the Commonwealth of the Northern

4 Mariana Islands may not be less than

5 $107,000; and

6 (ii) to any State not described in

7 clause (i) may not be less than $200,000;

8 or

9 (B) the total amount appropriated under

10 section 145 for a fiscal year is less than

11 $20,000,000, the allotment under paragraph

12 (1) for such fiscal year—

13 (i) to each of American Samoa,

14 Guam, the United States Virgin Islands,

15 and the Commonwealth of the Northern

16 Mariana Islands may not be less than

17 $80,000; and

18 (ii) to any State not described in

19 clause (i) may not be less than $150,000.

20 (3) REDUCTION OF ALLOTMENT.—Notwith21 standing paragraphs (1) and (2), if the aggregate of

22 the amounts to be allotted to the States pursuant to

23 such paragraphs for any fiscal year exceeds the total

24 amount appropriated for such allotments under sec25 tion 145 for such fiscal year, the amount to be allot-
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1 ted to each State for such fiscal year shall be pro2 portionately reduced.

3 (4) INCREASE IN ALLOTMENTS.—In any year in

4 which the total amount appropriated under section

5 145 for a fiscal year exceeds the total amount appro6 priated under such section (or a corresponding pro7 vision) for the preceding fiscal year by a percentage

8 greater than the most recent percentage change in

9 the Consumer Price Index published by the Sec10 retary of Labor under section 100(c)(1) of the Reha11 bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the

12 percentage change indicates an increase), the Sec13 retary shall increase each of the minimum allot14 ments described in subparagraphs (A) and (B) of

15 paragraph (2). The Secretary shall increase each

16 minimum allotment by an amount that bears the

17 same ratio to the amount of such minimum allot18 ment (including any increases in such minimum al19 lotment under this paragraph (or a corresponding

20 provision) for prior fiscal years) as the amount that

21 is equal to the difference between—

22 (A) the total amount appropriated under

23 section 145 for the fiscal year for which the in24 crease in the minimum allotment is being made;

25 minus
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1 (B) the total amount appropriated under

2 section 145 (or a corresponding provision) for

3 the immediately preceding fiscal year,

4 bears to the total amount appropriated under section

5 145 (or a corresponding provision) for such pre6 ceding fiscal year.

7 (5) MONITORING THE ADMINISTRATION OF THE

8 SYSTEM.—In a State in which the system is housed

9 in a State agency, the State may use not more than

10 5 percent of any allotment under this subsection for

11 the costs of monitoring the administration of the

12 system required under section 143(a).

13 (6) TECHNICAL ASSISTANCE AND AMERICAN IN14 DIAN CONSORTIUM.—In any case in which the total

15 amount appropriated under section 145 for a fiscal

16 year is more than $24,500,000, the Secretary

17 shall—

18 (A) use not more than 2 percent of the

19 amount appropriated to provide technical assist20 ance to eligible systems with respect to activi21 ties carried out under this subtitle (consistent

22 with requests by such systems for such assist23 ance for the year); and

24 (B) provide a grant in accordance with sec25 tion 143(b), and in an amount described in
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1 paragraph (2)(A)(i), to an American Indian

2 consortium to provide protection and advocacy

3 services.

4 (b) PAYMENT TO SYSTEMS.—Notwithstanding any

5 other provision of law, the Secretary shall pay directly to

6 any system in a State that complies with the provisions

7 of this subtitle the amount of the allotment made for the

8 State under this section, unless the system specifies other9 wise.

10 (c) UNOBLIGATED FUNDS.—Any amount paid to a

11 system under this subtitle for a fiscal year and remaining

12 unobligated at the end of such year shall remain available

13 to such system for the next fiscal year, for the purposes

14 for which such amount was paid.

15 SEC. 143. SYSTEM REQUIRED.

16 (a) SYSTEM REQUIRED.—In order for a State to re17 ceive an allotment under subtitle B or this subtitle—

18 (1) the State shall have in effect a system to

19 protect and advocate the rights of individuals with

20 developmental disabilities;

21 (2) such system shall—

22 (A) have the authority to—

23 (i) pursue legal, administrative, and

24 other appropriate remedies or approaches

25 to ensure the protection of, and advocacy
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1 for, the rights of such individuals within

2 the State who are or who may be eligible

3 for treatment, services, or habilitation, or

4 who are being considered for a change in

5 living arrangements, with particular atten6 tion to members of ethnic and racial mi7 nority groups; and

8 (ii) provide information on and refer9 ral to programs and services addressing

10 the needs of individuals with developmental

11 disabilities;

12 (B) have the authority to investigate inci13 dents of abuse and neglect of individuals with

14 developmental disabilities if the incidents are

15 reported to the system or if there is probable

16 cause to believe that the incidents occurred;

17 (C) on an annual basis, develop, submit to

18 the Secretary, and take action with regard to

19 goals (each of which is related to 1 or more

20 areas of emphasis) and priorities, developed

21 through data driven strategic planning, for the

22 system’s activities;

23 (D) on an annual basis, provide to the

24 public, including individuals with developmental

25 disabilities attributable to either physical im-
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1 pairment, mental impairment, or a combination

2 of physical and mental impairment, and their

3 representatives, and as appropriate, non-State

4 agency representatives of the State Councils on

5 Developmental Disabilities, and Centers, in the

6 State, an opportunity to comment on—

7 (i) the goals and priorities established

8 by the system and the rationale for the es9 tablishment of such goals; and

10 (ii) the activities of the system, in11 cluding the coordination of services with

12 the entities carrying out advocacy pro13 grams under the Rehabilitation Act of

14 1973 (29 U.S.C. 701 et seq.), the Older

15 Americans Act of 1965 (42 U.S.C. 3001 et

16 seq.), and the Protection and Advocacy for

17 Mentally Ill Individuals Act of 1986 (42

18 U.S.C. 10801 et seq.), and with entities

19 carrying out other related programs, in20 cluding the parent training and informa21 tion centers funded under the Individuals

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

23 1400 et seq.), and activities authorized

24 under section 101 or 102 of the Assistive
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1 Technology Act of 1998 (29 U.S.C. 3011,

2 3012);

3 (E) establish a grievance procedure for cli4 ents or prospective clients of the system to en5 sure that individuals with developmental disabil6 ities have full access to services of the system;

7 (F) not be administered by the State

8 Council on Developmental Disabilities;

9 (G) be independent of any agency that pro10 vides treatment, services, or habilitation to indi11 viduals with developmental disabilities;

12 (H) have access at reasonable times to any

13 individual with a developmental disability in a

14 location in which services, supports, and other

15 assistance are provided to such an individual, in

16 order to carry out the purpose of this subtitle;

17 (I) have access to all records of—

18 (i) any individual with a develop19 mental disability who is a client of the sys20 tem if such individual, or the legal guard21 ian, conservator, or other legal representa22 tive of such individual, has authorized the

23 system to have such access;

24 (ii) any individual with a develop25 mental disability, in a situation in which—
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1 (I) the individual, by reason of

2 such individual’s mental or physical

3 condition, is unable to authorize the

4 system to have such access;

5 (II) the individual does not have

6 a legal guardian, conservator, or other

7 legal representative, or the legal

8 guardian of the individual is the

9 State; and

10 (III) a complaint has been re11 ceived by the system about the indi12 vidual with regard to the status or

13 treatment of the individual or, as a

14 result of monitoring or other activi15 ties, there is probable cause to believe

16 that such individual has been subject

17 to abuse or neglect; and

18 (iii) any individual with a develop19 mental disability, in a situation in which—

20 (I) the individual has a legal

21 guardian, conservator, or other legal

22 representative;

23 (II) a complaint has been re24 ceived by the system about the indi25 vidual with regard to the status or
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1 treatment of the individual or, as a

2 result of monitoring or other activi3 ties, there is probable cause to believe

4 that such individual has been subject

5 to abuse or neglect;

6 (III) such representative has

7 been contacted by such system, upon

8 receipt of the name and address of

9 such representative;

10 (IV) such system has offered as11 sistance to such representative to re12 solve the situation; and

13 (V) such representative has failed

14 or refused to act on behalf of the indi15 vidual;

16 (J)(i) have access to the records of individ17 uals described in subparagraphs (B) and (I),

18 and other records that are relevant to con19 ducting an investigation, under the cir20 cumstances described in those subparagraphs,

21 not later than 3 business days after the system

22 makes a written request for the records in23 volved; and

24 (ii) have immediate access, not later than

25 24 hours after the system makes such a re-
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1 quest, to the records without consent from an2 other party, in a situation in which services,

3 supports, and other assistance are provided to

4 an individual with a developmental disability—

5 (I) if the system determines there is

6 probable cause to believe that the health or

7 safety of the individual is in serious and

8 immediate jeopardy; or

9 (II) in any case of death of an indi10 vidual with a developmental disability;

11 (K) hire and maintain sufficient numbers

12 and types of staff (qualified by training and ex13 perience) to carry out such system’s functions,

14 except that the State involved shall not apply

15 hiring freezes, reductions in force, prohibitions

16 on travel, or other policies to the staff of the

17 system, to the extent that such policies would

18 impact the staff or functions of the system

19 funded with Federal funds or would prevent the

20 system from carrying out the functions of the

21 system under this subtitle;

22 (L) have the authority to educate policy23 makers; and

24 (M) provide assurances to the Secretary

25 that funds allotted to the State under section
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1 142 will be used to supplement, and not sup2 plant, the non-Federal funds that would other3 wise be made available for the purposes for

4 which the allotted funds are provided;

5 (3) to the extent that information is available,

6 the State shall provide to the system—

7 (A) a copy of each independent review,

8 pursuant to section 1902(a)(30)(C) of the So9 cial Security Act (42 U.S.C. 1396a(a)(30)(C)),

10 of an Intermediate Care Facility (Mental Retar11 dation) within the State, not later than 30 days

12 after the availability of such a review; and

13 (B) information about the adequacy of

14 health care and other services, supports, and

15 assistance that individuals with developmental

16 disabilities who are served through home and

17 community-based waivers (authorized under

18 section 1915(c) of the Social Security Act (42

19 U.S.C. 1396n(c))) receive; and

20 (4) the agency implementing the system shall

21 not be redesignated unless—

22 (A) there is good cause for the redesigna23 tion;

24 (B) the State has given the agency notice

25 of the intention to make such redesignation, in-
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1 cluding notice regarding the good cause for

2 such redesignation, and given the agency an op3 portunity to respond to the assertion that good

4 cause has been shown;

5 (C) the State has given timely notice and

6 an opportunity for public comment in an acces7 sible format to individuals with developmental

8 disabilities or their representatives; and

9 (D) the system has an opportunity to ap10 peal the redesignation to the Secretary, on the

11 basis that the redesignation was not for good

12 cause.

13 (b) AMERICAN INDIAN CONSORTIUM.—Upon applica14 tion to the Secretary, an American Indian consortium es15 tablished to provide protection and advocacy services

16 under this subtitle, shall receive funding pursuant to sec17 tion 142(a)(6) to provide the services. Such consortium

18 shall be considered to be a system for purposes of this

19 subtitle and shall coordinate the services with other sys20 tems serving the same geographic area. The tribal council

21 that designates the consortium shall carry out the respon22 sibilities and exercise the authorities specified for a State

23 in this subtitle, with regard to the consortium.

24 (c) RECORD.—In this section, the term ‘‘record’’

25 includes—
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1 (1) a report prepared or received by any staff

2 at any location at which services, supports, or other

3 assistance is provided to individuals with develop4 mental disabilities;

5 (2) a report prepared by an agency or staff per6 son charged with investigating reports of incidents

7 of abuse or neglect, injury, or death occurring at

8 such location, that describes such incidents and the

9 steps taken to investigate such incidents; and

10 (3) a discharge planning record.

11 SEC. 144. ADMINISTRATION.

12 (a) GOVERNING BOARD.—In a State in which the

13 system described in section 143 is organized as a private

14 nonprofit entity with a multimember governing board, or

15 a public system with a multimember governing board, such

16 governing board shall be selected according to the policies

17 and procedures of the system, except that—

18 (1)(A) the governing board shall be composed

19 of members who broadly represent or are knowledge20 able about the needs of the individuals served by the

21 system;

22 (B) a majority of the members of the board

23 shall be—

24 (i) individuals with disabilities, including

25 individuals with developmental disabilities, who
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1 are eligible for services, or have received or are

2 receiving services through the system; or

3 (ii) parents, family members, guardians,

4 advocates, or authorized representatives of indi5 viduals referred to in clause (i); and

6 (C) the board may include a representative of

7 the State Council on Developmental Disabilities, the

8 Centers in the State, and the self-advocacy organiza9 tion described in section 124(c)(4)(A)(ii)(I);

(2) not more than 1 10 ⁄3 of the members of the

11 governing board may be appointed by the chief exec12 utive officer of the State involved, in the case of any

13 State in which such officer has the authority to ap14 point members of the board;

15 (3) the membership of the governing board

16 shall be subject to term limits set by the system to

17 ensure rotating membership;

18 (4) any vacancy in the board shall be filled not

19 later than 60 days after the date on which the va20 cancy occurs; and

21 (5) in a State in which the system is organized

22 as a public system without a multimember governing

23 or advisory board, the system shall establish an advi24 sory council—
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1 (A) that shall advise the system on policies

2 and priorities to be carried out in protecting

3 and advocating the rights of individuals with

4 developmental disabilities; and

5 (B) on which a majority of the members

6 shall be—

7 (i) individuals with developmental dis8 abilities who are eligible for services, or

9 have received or are receiving services,

10 through the system; or

11 (ii) parents, family members, guard12 ians, advocates, or authorized representa13 tives of individuals referred to in clause (i).

14 (b) LEGAL ACTION.—

15 (1) IN GENERAL.—Nothing in this title shall

16 preclude a system from bringing a suit on behalf of

17 individuals with developmental disabilities against a

18 State, or an agency or instrumentality of a State.

19 (2) USE OF AMOUNTS FROM JUDGMENT.—An

20 amount received pursuant to a suit described in

21 paragraph (1) through a court judgment may only

22 be used by the system to further the purpose of this

23 subtitle and shall not be used to augment payments

24 to legal contractors or to award personal bonuses.
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1 (3) LIMITATION.—The system shall use assist2 ance provided under this subtitle in a manner con3 sistent with section 5 of the Assisted Suicide Fund4 ing Restriction Act of 1997 (42 U.S.C. 14404).

5 (c) DISCLOSURE OF INFORMATION.—For purposes of

6 any periodic audit, report, or evaluation required under

7 this subtitle, the Secretary shall not require an entity car8 rying out a program to disclose the identity of, or any

9 other personally identifiable information related to, any in10 dividual requesting assistance under such program.

11 (d) PUBLIC NOTICE OF FEDERAL ONSITE RE12 VIEW.—The Secretary shall provide advance public notice

13 of any Federal programmatic or administrative onsite re14 view of a system conducted under this subtitle and solicit

15 public comment on the system through such notice. The

16 Secretary shall prepare an onsite visit report containing

17 the results of such review, which shall be distributed to

18 the Governor of the State and to other interested public

19 and private parties. The comments received in response

20 to the public comment solicitation notice shall be included

21 in the onsite visit report.

22 (e) REPORTS.—Beginning in fiscal year 2002, each

23 system established in a State pursuant to this subtitle

24 shall annually prepare and transmit to the Secretary a re25 port that describes the activities, accomplishments, and
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1 expenditures of the system during the preceding fiscal

2 year, including a description of the system’s goals, the ex3 tent to which the goals were achieved, barriers to their

4 achievement, the process used to obtain public input, the

5 nature of such input, and how such input was used.

6 SEC. 145. AUTHORIZATION OF APPROPRIATIONS.

7 For allotments under section 142, there are author8 ized to be appropriated $32,000,000 for fiscal year 2001

9 and such sums as may be necessary for each of fiscal years

10 2002 through 2007.

11 Subtitle D—National Network of

12 University Centers for Excel13 lence in Developmental Disabil14 ities Education, Research, and

15 Service

16 SEC. 151. GRANT AUTHORITY.

17 (a) NATIONAL NETWORK.—From appropriations au18 thorized under section 156(a)(1), the Secretary shall make

19 5-year grants to entities in each State designated as Uni20 versity Centers for Excellence in Developmental Disabil21 ities Education, Research, and Service to carry out activi22 ties described in section 153(a).

23 (b) NATIONAL TRAINING INITIATIVES.—From appro24 priations authorized under section 156(a)(1) and reserved

25 under section 156(a)(2), the Secretary shall make grants
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1 to Centers to carry out activities described in section

2 153(b).

3 (c) TECHNICAL ASSISTANCE.—From appropriations

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

5 section 156(a)(3) (or from funds reserved under section

6 163, as appropriate), the Secretary shall enter into 1 or

7 more cooperative agreements or contracts for the purpose

8 of providing technical assistance described in section

9 153(c).

10 SEC. 152. GRANT AWARDS.

11 (a) EXISTING CENTERS.—

12 (1) IN GENERAL.—In awarding and distributing

13 grant funds under section 151(a) for a fiscal year,

14 the Secretary, subject to the availability of appro15 priations and the condition specified in subsection

16 (d), shall award and distribute grant funds in equal

17 amounts of $500,000 (adjusted in accordance with

18 subsection (b)), to each Center that existed during

19 the preceding fiscal year and that meets the require20 ments of this subtitle, prior to making grants under

21 subsection (c) or (d).

22 (2) REDUCTION OF AWARD.—Notwithstanding

23 paragraph (1), if the aggregate of the funds to be

24 awarded to the Centers pursuant to paragraph (1)

25 for any fiscal year exceeds the total amount appro-
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1 priated under section 156 for such fiscal year, the

2 amount to be awarded to each Center for such fiscal

3 year shall be proportionately reduced.

4 (b) ADJUSTMENTS.—Subject to the availability of ap5 propriations, for any fiscal year following a year in which

6 each Center described in subsection (a) received a grant

7 award of not less than $500,000 under subsection (a) (ad8 justed in accordance with this subsection), the Secretary

9 shall adjust the awards to take into account the most re10 cent percentage change in the Consumer Price Index pub11 lished by the Secretary of Labor under section 100(c)(1)

12 of the Rehabilitation Act of 1973 (29 U.S.C. 720(c)(1))

13 (if the percentage change indicates an increase), prior to

14 making grants under subsection (c) or (d).

15 (c) NATIONAL TRAINING INITIATIVES ON CRITICAL

16 AND EMERGING NEEDS.—Subject to the availability of ap17 propriations, for any fiscal year in which each Center de18 scribed in subsection (a) receives a grant award of not less

19 than $500,000, under subsection (a) (adjusted in accord20 ance with subsection (b)), after making the grant awards,

21 the Secretary shall make grants under section 151(b) to

22 Centers to pay for the Federal share of the cost of training

23 initiatives related to the unmet needs of individuals with

24 developmental disabilities and their families, as described

25 in section 153(b).
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1 (d) ADDITIONAL GRANTS.—For any fiscal year in

2 which each Center described in subsection (a) receives a

3 grant award of not less than $500,000 under subsection

4 (a) (adjusted in accordance with subsection (b)), after

5 making the grant awards, the Secretary may make grants

6 under section 151(a) for activities described in section

7 153(a) to additional Centers, or additional grants to Cen8 ters, for States or populations that are unserved or under9 served by Centers due to such factors as—

10 (1) population;

11 (2) a high concentration of rural or urban

12 areas; or

13 (3) a high concentration of unserved or under14 served populations.

15 SEC. 153. PURPOSE AND SCOPE OF ACTIVITIES.

16 (a) NATIONAL NETWORK OF UNIVERSITY CENTERS

17 FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES

18 EDUCATION, RESEARCH, AND SERVICE.—

19 (1) IN GENERAL.—In order to provide leader20 ship in, advise Federal, State, and community pol21 icymakers about, and promote opportunities for indi22 viduals with developmental disabilities to exercise

23 self-determination, be independent, be productive,

24 and be integrated and included in all facets of com25 munity life, the Secretary shall award grants to eli-
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1 gible entities designated as Centers in each State to

2 pay for the Federal share of the cost of the adminis3 tration and operation of the Centers. The Centers

4 shall be interdisciplinary education, research, and

5 public service units of universities (as defined by the

6 Secretary) or public or not-for-profit entities associ7 ated with universities that engage in core functions,

8 described in paragraph (2), addressing, directly or

9 indirectly, 1 or more of the areas of emphasis.

10 (2) CORE FUNCTIONS.—The core functions re11 ferred to in paragraph (1) shall include the fol12 lowing:

13 (A) Provision of interdisciplinary pre-serv14 ice preparation and continuing education of stu15 dents and fellows, which may include the prepa16 ration and continuing education of leadership,

17 direct service, clinical, or other personnel to

18 strengthen and increase the capacity of States

19 and communities to achieve the purpose of this

20 title.

21 (B) Provision of community services—

22 (i) that provide training or technical

23 assistance for individuals with develop24 mental disabilities, their families, profes25 sionals, paraprofessionals, policymakers,
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1 students, and other members of the com2 munity; and

3 (ii) that may provide services, sup4 ports, and assistance for the persons de5 scribed in clause (i) through demonstration

6 and model activities.

7 (C) Conduct of research, which may in8 clude basic or applied research, evaluation, and

9 the analysis of public policy in areas that affect

10 or could affect, either positively or negatively,

11 individuals with developmental disabilities and

12 their families.

13 (D) Dissemination of information related

14 to activities undertaken to address the purpose

15 of this title, especially dissemination of informa16 tion that demonstrates that the network author17 ized under this subtitle is a national and inter18 national resource that includes specific sub19 stantive areas of expertise that may be accessed

20 and applied in diverse settings and cir21 cumstances.

22 (b) NATIONAL TRAINING INITIATIVES ON CRITICAL

23 AND EMERGING NEEDS.—

24 (1) SUPPLEMENTAL GRANTS.—After consulta25 tion with relevant, informed sources, including indi-
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1 viduals with developmental disabilities and their

2 families, the Secretary shall award, under section

3 151(b), supplemental grants to Centers to pay for

4 the Federal share of the cost of training initiatives

5 related to the unmet needs of individuals with devel6 opmental disabilities and their families. The Sec7 retary shall make the grants on a competitive basis,

8 and for periods of not more than 5 years.

9 (2) ESTABLISHMENT OF CONSULTATION PROC10 ESS BY THE SECRETARY.—Not later than 1 year

11 after the date of enactment of this Act, the Sec12 retary shall establish a consultation process that, on

13 an ongoing basis, allows the Secretary to identify

14 and address, through supplemental grants author15 ized under paragraph (1), training initiatives related

16 to the unmet needs of individuals with developmental

17 disabilities and their families.

18 (c) TECHNICAL ASSISTANCE.—In order to strengthen

19 and support the national network of Centers, the Sec20 retary may enter into 1 or more cooperative agreements

21 or contracts to—

22 (1) assist in national and international dissemi23 nation of specific information from multiple Centers

24 and, in appropriate cases, other entities whose work
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1 affects the lives of individuals with developmental

2 disabilities;

3 (2) compile, analyze, and disseminate state-of4 the-art training, research, and demonstration results

5 policies, and practices from multiple Centers and, in

6 appropriate cases, other entities whose work affects

7 the lives of persons with developmental disabilities;

8 (3) convene experts from multiple Centers to

9 discuss and make recommendations with regard to

10 national emerging needs of individuals with develop11 mental disabilities;

12 (4)(A) develop portals that link users with every

13 Center’s website; and

14 (B) facilitate electronic information sharing

15 using state-of-the-art Internet technologies such as

16 real-time online discussions, multipoint video confer17 encing, and web-based audio/video broadcasts, on

18 emerging topics that impact individuals with disabil19 ities and their families;

20 (5) serve as a research-based resource for Fed21 eral and State policymakers on information con22 cerning and issues impacting individuals with devel23 opmental disabilities and entities that assist or serve

24 those individuals; or
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1 (6) undertake any other functions that the Sec2 retary determines to be appropriate;

3 to promote the viability and use of the resources and ex4 pertise of the Centers nationally and internationally.

5 SEC. 154. APPLICATIONS.

6 (a) APPLICATIONS FOR CORE CENTER GRANTS.—

7 (1) IN GENERAL.—To be eligible to receive a

8 grant under section 151(a) for a Center, an entity

9 shall submit to the Secretary, and obtain approval

10 of, an application at such time, in such manner, and

11 containing such information, as the Secretary may

12 require.

13 (2) APPLICATION CONTENTS.—Each application

14 described in paragraph (1) shall describe a 5-year

15 plan, including a projected goal related to 1 or more

16 areas of emphasis for each of the core functions de17 scribed in section 153(a).

18 (3) ASSURANCES.—The application shall be ap19 proved by the Secretary only if the application con20 tains or is supported by reasonable assurances that

21 the entity designated as the Center will—

22 (A) meet regulatory standards as estab23 lished by the Secretary for Centers;

24 (B) address the projected goals, and carry

25 out goal-related activities, based on data driven
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1 strategic planning and in a manner consistent

2 with the objectives of this subtitle, that—

3 (i) are developed in collaboration with

4 the consumer advisory committee estab5 lished pursuant to subparagraph (E);

6 (ii) are consistent with, and to the ex7 tent feasible complement and further, the

8 Council goals contained in the State plan

9 submitted under section 124 and the sys10 tem goals established under section 143;

11 and

12 (iii) will be reviewed and revised annu13 ally as necessary to address emerging

14 trends and needs;

15 (C) use the funds made available through

16 the grant to supplement, and not supplant, the

17 funds that would otherwise be made available

18 for activities described in section 153(a);

19 (D) protect, consistent with the policy

20 specified in section 101(c) (relating to rights of

21 individuals with developmental disabilities), the

22 legal and human rights of all individuals with

23 developmental disabilities (especially those indi24 viduals under State guardianship) who are in-
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1 volved in activities carried out under programs

2 assisted under this subtitle;

3 (E) establish a consumer advisory

4 committee—

5 (i) of which a majority of the mem6 bers shall be individuals with develop7 mental disabilities and family members of

8 such individuals;

9 (ii) that is comprised of—

10 (I) individuals with develop11 mental disabilities and related disabil12 ities;

13 (II) family members of individ14 uals with developmental disabilities;

15 (III) a representative of the State

16 protection and advocacy system;

17 (IV) a representative of the State

18 Council on Developmental Disabilities;

19 (V) a representative of a self-ad20 vocacy organization described in sec21 tion 124(c)(4)(A)(ii)(I); and

22 (VI) representatives of organiza23 tions that may include parent training

24 and information centers assisted

25 under section 682 or 683 of the Indi-
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1 viduals with Disabilities Education

2 Act (20 U.S.C. 1482, 1483), entities

3 carrying out activities authorized

4 under section 101 or 102 of the As5 sistive Technology Act of 1998 (29

6 U.S.C. 3011, 3012), relevant State

7 agencies, and other community groups

8 concerned with the welfare of individ9 uals with developmental disabilities

10 and their families;

11 (iii) that reflects the racial and ethnic

12 diversity of the State; and

13 (iv) that shall—

14 (I) consult with the Director of

15 the Center regarding the development

16 of the 5-year plan, and shall partici17 pate in an annual review of, and com18 ment on, the progress of the Center in

19 meeting the projected goals contained

20 in the plan, and shall make rec21 ommendations to the Director of the

22 Center regarding any proposed revi23 sions of the plan that might be nec24 essary; and
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1 (II) meet as often as necessary to

2 carry out the role of the committee,

3 but at a minimum twice during each

4 grant year;

5 (F) to the extent possible, utilize the infra6 structure and resources obtained through funds

7 made available under the grant to leverage ad8 ditional public and private funds to successfully

9 achieve the projected goals developed in the 5-

10 year plan;

11 (G)(i) have a director with appropriate

12 academic credentials, demonstrated leadership,

13 expertise regarding developmental disabilities,

14 significant experience in managing grants and

15 contracts, and the ability to leverage public and

16 private funds; and

17 (ii) allocate adequate staff time to carry

18 out activities related to each of the core func19 tions described in section 153(a); and

20 (H) educate, and disseminate information

21 related to the purpose of this title to, the legis22 lature of the State in which the Center is lo23 cated, and to Members of Congress from such

24 State.
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1 (b) SUPPLEMENTAL GRANT APPLICATIONS PER2 TAINING TO NATIONAL TRAINING INITIATIVES IN CRIT3 ICAL AND EMERGING NEEDS.—To be eligible to receive

4 a supplemental grant under section 151(b), a Center may

5 submit a supplemental application to the Secretary at such

6 time, in such manner, and containing such information as

7 the Secretary may require, pursuant to the terms and con8 ditions set by the Secretary consistent with section 153(b).

9 (c) PEER REVIEW.—

10 (1) IN GENERAL.—The Secretary shall require

11 that all applications submitted under this subtitle be

12 subject to technical and qualitative review by peer

13 review groups established under paragraph (2). The

14 Secretary may approve an application under this

15 subtitle only if such application has been rec16 ommended by a peer review group that has con17 ducted the peer review required under this para18 graph. In conducting the review, the group may con19 duct onsite visits or inspections of related activities

20 as necessary.

21 (2) ESTABLISHMENT OF PEER REVIEW

22 GROUPS.—

23 (A) IN GENERAL.—The Secretary, acting

24 through the Commissioner of the Administra-
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1 tion on Developmental Disabilities, may,

2 notwithstanding—

3 (i) the provisions of title 5, United

4 States Code, concerning appointments to

5 the competitive service; and

6 (ii) the provisions of chapter 51, and

7 subchapter III of chapter 53 of title 5,

8 United States Code, concerning classifica9 tion and General Schedule pay rates;

10 establish such peer review groups and appoint

11 and set the rates of pay of members of such

12 groups.

13 (B) COMPOSITION.—Each peer review

14 group shall include such individuals with dis15 abilities and parents, guardians, or advocates of

16 or for individuals with developmental disabil17 ities, as are necessary to carry out this sub18 section.

19 (3) WAIVERS OF APPROVAL.—The Secretary

20 may waive the provisions of paragraph (1) with re21 spect to review and approval of an application if the

22 Secretary determines that exceptional circumstances

23 warrant such a waiver.

24 (d) FEDERAL SHARE.—
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1 (1) IN GENERAL.—The Federal share of the

2 cost of administration or operation of a Center, or

3 the cost of carrying out a training initiative, sup4 ported by a grant made under this subtitle may not

5 be more than 75 percent of the necessary cost of

6 such project, as determined by the Secretary.

7 (2) URBAN OR RURAL POVERTY AREAS.—In the

8 case of a project whose activities or products target

9 individuals with developmental disabilities who live

10 in an urban or rural poverty area, as determined by

11 the Secretary, the Federal share of the cost of the

12 project may not be more than 90 percent of the nec13 essary costs of the project, as determined by the

14 Secretary.

15 (3) GRANT EXPENDITURES.—For the purpose

16 of determining the Federal share with respect to the

17 project, expenditures on that project by a political

18 subdivision of a State or by a public or private entity

19 shall, subject to such limitations and conditions as

20 the Secretary may by regulation prescribe under sec21 tion 104(b), be considered to be expenditures made

22 by a Center under this subtitle.

23 (e) ANNUAL REPORT.—Each Center shall annually

24 prepare and transmit to the Secretary a report

25 containing—
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1 (1) information on progress made in achieving

2 the projected goals of the Center for the previous

3 year, including—

4 (A) the extent to which the goals were

5 achieved;

6 (B) a description of the strategies that

7 contributed to achieving the goals;

8 (C) to the extent to which the goals were

9 not achieved, a description of factors that im10 peded the achievement; and

11 (D) an accounting of the manner in which

12 funds paid to the Center under this subtitle for

13 a fiscal year were expended;

14 (2) information on proposed revisions to the

15 goals; and

16 (3) a description of successful efforts to lever17 age funds, other than funds made available under

18 this subtitle, to pursue goals consistent with this

19 subtitle.

20 SEC. 155. DEFINITION.

21 In this subtitle, the term ‘‘State’’ means each of the

22 several States of the United States, the District of Colum23 bia, the Commonwealth of Puerto Rico, the United States

24 Virgin Islands, and Guam.
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1 SEC. 156. AUTHORIZATION OF APPROPRIATIONS.

2 (a) AUTHORIZATION AND RESERVATIONS.—

3 (1) AUTHORIZATION.—There are authorized to

4 be appropriated to carry out this subtitle (other than

5 section 153(c)(4)) $30,000,000 for fiscal year 2001

6 and such sums as may be necessary for each of fis7 cal years 2002 through 2007.

8 (2) RESERVATION FOR TRAINING INITIA9 TIVES.—From any amount appropriated for a fiscal

10 year under paragraph (1) and remaining after each

11 Center described in section 152(a) has received a

12 grant award of not less than $500,000, as described

13 in section 152, the Secretary shall reserve funds for

14 the training initiatives authorized under section

15 153(b).

16 (3) RESERVATION FOR TECHNICAL ASSIST17 ANCE.—

18 (A) YEARS BEFORE APPROPRIATION TRIG19 GER.—For any covered year, the Secretary

20 shall reserve funds in accordance with section

21 163(c) to fund technical assistance activities

22 under section 153(c) (other than section

23 153(c)(4)).

24 (B) YEARS AFTER APPROPRIATION TRIG25 GER.—For any fiscal year that is not a covered

26 year, the Secretary shall reserve not less than
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1 $300,000 and not more than 2 percent of the

2 amount appropriated under paragraph (1) to

3 fund technical assistance activities under sec4 tion 153(c) (other than section 153(c)(4)).

5 (C) COVERED YEAR.—In this paragraph,

6 the term ‘‘covered year’’ means a fiscal year

7 prior to the first fiscal year for which the

8 amount appropriated under paragraph (1) is

9 not less than $20,000,000.

10 (b) LIMITATION.—The Secretary may not use, for

11 peer review or other activities directly related to peer re12 view conducted under this subtitle—

13 (1) for fiscal year 2001, more than $300,000 of

14 the funds made available under subsection (a); and

15 (2) for any succeeding fiscal year, more than

16 the amount of funds used for the peer review and

17 related activities in fiscal year 2001, adjusted to

18 take into account the most recent percentage change

19 in the Consumer Price Index published by the Sec20 retary of Labor under section 100(c)(1) of the Reha21 bilitation Act of 1973 (29 U.S.C. 720(c)(1)) (if the

22 percentage change indicates an increase).
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1 Subtitle E—Projects of National

2 Significance

3 SEC. 161. PURPOSE.

4 The purpose of this subtitle is to provide grants, con5 tracts, or cooperative agreements for projects of national

6 significance that—

7 (1) create opportunities for individuals with de8 velopmental disabilities to directly and fully con9 tribute to, and participate in, all facets of commu10 nity life; and

11 (2) support the development of national and

12 State policies that reinforce and promote, with the

13 support of families, guardians, advocates, and com14 munities, of individuals with developmental disabil15 ities, the self-determination, independence, produc16 tivity, and integration and inclusion in all facets of

17 community life of such individuals through—

18 (A) family support activities;

19 (B) data collection and analysis;

20 (C) technical assistance to entities funded

21 under subtitles B and D, subject to the limita22 tions described in sections 129(b), 156(a)(3),

23 and 163(c); and
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1 (D) other projects of sufficient size and

2 scope that hold promise to expand or improve

3 opportunities for such individuals, including—

4 (i) projects that provide technical as5 sistance for the development of information

6 and referral systems;

7 (ii) projects that provide technical as8 sistance to self-advocacy organizations of

9 individuals with developmental disabilities;

10 (iii) projects that provide education

11 for policymakers;

12 (iv) Federal interagency initiatives;

13 (v) projects that enhance the partici14 pation of racial and ethnic minorities in

15 public and private sector initiatives in de16 velopmental disabilities;

17 (vi) projects that provide aid to tran18 sition youth with developmental disabilities

19 from school to adult life, especially in find20 ing employment and postsecondary edu21 cation opportunities and in upgrading and

22 changing any assistive technology devices

23 that may be needed as a youth matures;

24 (vii) initiatives that address the devel25 opment of community quality assurance
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1 systems and the training related to the de2 velopment, implementation, and evaluation

3 of such systems, including training of indi4 viduals with developmental disabilities and

5 their families;

6 (viii) initiatives that address the needs

7 of aging individuals with developmental

8 disabilities and aging caregivers of adults

9 with developmental disabilities in the com10 munity;

11 (ix) initiatives that create greater ac12 cess to and use of generic services systems,

13 community organizations, and associations,

14 and initiatives that assist in community

15 economic development;

16 (x) initiatives that create access to in17 creased living options;

18 (xi) initiatives that address the chal19 lenging behaviors of individuals with devel20 opmental disabilities, including initiatives

21 that promote positive alternatives to the

22 use of restraints and seclusion; and

23 (xii) initiatives that address other

24 areas of emerging need.
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1 SEC. 162. GRANT AUTHORITY.

2 (a) IN GENERAL.—The Secretary shall award grants,

3 contracts, or cooperative agreements to public or private

4 nonprofit entities for projects of national significance re5 lating to individuals with developmental disabilities to

6 carry out activities described in section 161(2).

7 (b) FEDERAL INTERAGENCY INITIATIVES.—

8 (1) IN GENERAL.—

9 (A) AUTHORITY.—The Secretary may—

10 (i) enter into agreements with Federal

11 agencies to jointly carry out activities de12 scribed in section 161(2) or to jointly carry

13 out activities of common interest related to

14 the objectives of such section; and

15 (ii) transfer to such agencies for such

16 purposes funds appropriated under this

17 subtitle, and receive and use funds from

18 such agencies for such purposes.

19 (B) RELATION TO PROGRAM PURPOSES.—

20 Funds transferred or received pursuant to this

21 paragraph shall be used only in accordance with

22 statutes authorizing the appropriation of such

23 funds. Such funds shall be made available

24 through grants, contracts, or cooperative agree25 ments only to recipients eligible to receive such

26 funds under such statutes.
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1 (C) PROCEDURES AND CRITERIA.—If the

2 Secretary enters into an agreement under this

3 subsection for the administration of a jointly

4 funded project—

5 (i) the agreement shall specify which

6 agency’s procedures shall be used to award

7 grants, contracts, or cooperative agree8 ments and to administer such awards;

9 (ii) the participating agencies may de10 velop a single set of criteria for the jointly

11 funded project, and may require applicants

12 to submit a single application for joint re13 view by such agencies; and

14 (iii) unless the heads of the partici15 pating agencies develop joint eligibility re16 quirements, an applicant for an award for

17 the project shall meet the eligibility re18 quirements of each program involved.

19 (2) LIMITATION.—The Secretary may not con20 strue the provisions of this subsection to take prece21 dence over a limitation on joint funding contained in

22 an applicable statute.

23 SEC. 163. AUTHORIZATION OF APPROPRIATIONS.

24 (a) IN GENERAL.—There are authorized to be appro25 priated to carry out the projects specified in this section
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1 $16,000,000 for fiscal year 2001, and such sums as may

2 be necessary for each of fiscal years 2002 through 2007.

3 (b) USE OF FUNDS.—

4 (1) GRANTS, CONTRACTS, AND AGREEMENTS.—

5 Except as provided in paragraph (2), the amount

6 appropriated under subsection (a) for each fiscal

7 year shall be used to award grants, or enter into

8 contracts, cooperative agreements, or other agree9 ments, under section 162.

10 (2) ADMINISTRATIVE COSTS.—Not more than 1

11 percent of the amount appropriated under sub12 section (a) for each fiscal year may be used to pro13 vide for the administrative costs (other than com14 pensation of Federal employees) of the Administra15 tion on Developmental Disabilities for administering

16 this subtitle and subtitles B, C, and D, including

17 monitoring the performance of and providing tech18 nical assistance to, entities that receive funds under

19 this title.

20 (c) TECHNICAL ASSISTANCE FOR COUNCILS AND

21 CENTERS.—

22 (1) IN GENERAL.—For each covered year, the

23 Secretary shall expend, to provide technical assist24 ance for entities funded under subtitle B or D, an

25 amount from funds appropriated under subsection
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1 (a) that is not less than the amount the Secretary

2 expended on technical assistance for entities funded

3 under that subtitle (or a corresponding provision) in

4 the previous fiscal year.

5 (2) COVERED YEAR.—In this subsection, the

6 term ‘‘covered year’’ means—

7 (A) in the case of an expenditure for enti8 ties funded under subtitle B, a fiscal year for

9 which the amount appropriated under section

10 129(a) is less than $76,000,000; and

11 (B) in the case of an expenditure for enti12 ties funded under subtitle D, a fiscal year prior

13 to the first fiscal year for which the amount ap14 propriated under section 156(a)(1) is not less

15 than $20,000,000.

16 (3) REFERENCES.—References in this sub17 section to subtitle D shall not be considered to in18 clude section 153(c)(4).

19 (d) TECHNICAL ASSISTANCE ON ELECTRONIC INFOR20 MATION SHARING.—In addition to any funds reserved

21 under subsection (c), the Secretary shall reserve $100,000

22 from the amount appropriated under subsection (a) for

23 each fiscal year to carry out section 153(c)(4).

24 (e) LIMITATION.—For any fiscal year for which the

25 amount appropriated under subsection (a) is not less than
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1 $10,000,000, not more than 50 percent of such amount

2 shall be used for activities carried out under section

3 161(2)(A).

4 TITLE II—FAMILY SUPPORT

5 SEC. 201. SHORT TITLE.

6 This title may be cited as the ‘‘Families of Children

7 With Disabilities Support Act of 1999’’.

8 SEC. 202. FINDINGS, PURPOSES, AND POLICY.

9 (a) FINDINGS.—Congress makes the following find10 ings:

11 (1) It is in the best interest of our Nation to

12 preserve, strengthen, and maintain the family.

13 (2) Families of children with disabilities provide

14 support, care, and training to their children that can

15 save States millions of dollars. Without the efforts of

16 family caregivers, many persons with disabilities

17 would receive care through State-supported out-of18 home placements.

19 (3) Most families of children with disabilities,

20 especially families in unserved and underserved pop21 ulations, do not have access to family-centered and

22 family-directed services to support such families in

23 their efforts to care for such children at home.

24 (4) Medical advances and improved health care

25 have increased the life span of many people with dis-
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1 abilities, and the combination of the longer life

2 spans and the aging of family caregivers places a

3 continually increasing demand on the finite service

4 delivery systems of the States.

5 (5) In 1996, 49 States provided family support

6 initiatives in response to the needs of families of

7 children with disabilities. Such initiatives included

8 the provision of cash subsidies, respite care, and

9 other forms of support. There is a need in each

10 State, however, to strengthen, expand, and coordi11 nate the activities of a system of family support

12 services for families of children with disabilities that

13 is easily accessible, avoids duplication, uses resources

14 efficiently, and prevents gaps in services to families

15 in all areas of the State.

16 (6) The goals of the Nation properly include the

17 goal of providing to families of children with disabil18 ities the family support services necessary—

19 (A) to support the family;

20 (B) to enable families of children with dis21 abilities to nurture and enjoy their children at

22 home;

23 (C) to enable families of children with dis24 abilities to make informed choices and decisions

25 regarding the nature of supports, resources,
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1 services, and other assistance made available to

2 such families; and

3 (D) to support family caregivers of adults

4 with disabilities.

5 (b) PURPOSES.—The purposes of this title are—

6 (1) to promote and strengthen the implementa7 tion of comprehensive State systems of family sup8 port services, for families with children with disabil9 ities, that are family-centered and family-directed,

10 and that provide families with the greatest possible

11 decisionmaking authority and control regarding the

12 nature and use of services and support;

13 (2) to promote leadership by families in plan14 ning, policy development, implementation, and eval15 uation of family support services for families of chil16 dren with disabilities;

17 (3) to promote and develop interagency coordi18 nation and collaboration between agencies respon19 sible for providing the services; and

20 (4) to increase the availability of, funding for,

21 access to, and provision of family support services

22 for families of children with disabilities.

23 (c) POLICY.—It is the policy of the United States

24 that all programs, projects, and activities funded under

25 this title shall be family-centered and family-directed, and
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1 shall be provided in a manner consistent with the goal of

2 providing families of children with disabilities with the

3 support the families need to raise their children at home.

4 SEC. 203. DEFINITIONS AND SPECIAL RULE.

5 (a) DEFINITIONS.—In this title:

6 (1) CHILD WITH A DISABILITY.—The term

7 ‘‘child with a disability’’ means an individual who—

8 (A) has a significant physical or mental

9 impairment, as defined pursuant to State policy

10 to the extent that such policy is established

11 without regard to type of disability; or

12 (B) is an infant or a young child from

13 birth through age 8 and has a substantial de14 velopmental delay or specific congenital or ac15 quired condition that presents a high prob16 ability of resulting in a disability if services are

17 not provided to the infant or child.

18 (2) FAMILY.—

19 (A) IN GENERAL.—Subject to subpara20 graph (B), for purposes of the application of

21 this title in a State, the term ‘‘family’’ has the

22 meaning given the term by the State.

23 (B) EXCLUSION OF EMPLOYEES.—The

24 term does not include an employee who, acting

25 in a paid employment capacity, provides serv-
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1 ices to a child with a disability in an out-of2 home setting such as a hospital, nursing home,

3 personal care home, board and care home,

4 group home, or other facility.

5 (3) FAMILY SUPPORT FOR FAMILIES OF CHIL6 DREN WITH DISABILITIES.—The term ‘‘family sup7 port for families of children with disabilities’’ means

8 supports, resources, services, and other assistance

9 provided to families of children with disabilities pur10 suant to State policy that are designed to—

11 (A) support families in the efforts of such

12 families to raise their children with disabilities

13 in the home;

14 (B) strengthen the role of the family as

15 primary caregiver for such children;

16 (C) prevent involuntary out-of-the-home

17 placement of such children and maintain family

18 unity; and

19 (D) reunite families with children with dis20 abilities who have been placed out of the home,

21 whenever possible.

22 (4) SECRETARY.—The term ‘‘Secretary’’ means

23 the Secretary of Health and Human Services.

24 (5) STATE.—The term ‘‘State’’ means each of

25 the 50 States of the United States, the District of
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1 Columbia, the Commonwealth of Puerto Rico, the

2 United States Virgin Islands, Guam, American

3 Samoa, and the Commonwealth of the Northern

4 Mariana Islands.

5 (6) SYSTEMS CHANGE ACTIVITIES.—The term

6 ‘‘systems change activities’’ means efforts that result

7 in laws, regulations, policies, practices, or organiza8 tional structures—

9 (A) that are family-centered and family-di10 rected;

11 (B) that facilitate and increase access to,

12 provision of, and funding for, family support

13 services for families of children with disabilities;

14 and

15 (C) that otherwise accomplish the purposes

16 of this title.

17 (b) SPECIAL RULE.—References in this title to a

18 child with a disability shall be considered to include ref19 erences to an individual who is not younger than age 18

20 who—

21 (1) has a significant impairment described in

22 subsection (a)(1)(A); and

23 (2) is residing with and receiving assistance

24 from a family member.
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1 SEC. 204. GRANTS TO STATES.

2 (a) IN GENERAL.—The Secretary shall make grants

3 to States on a competitive basis, in accordance with the

4 provisions of this title, to support systems change activi5 ties designed to assist States to develop and implement,

6 or expand and enhance, a statewide system of family sup7 port services for families of children with disabilities that

8 accomplishes the purposes of this title.

9 (b) AWARD PERIOD AND GRANT LIMITATION.—No

10 grant shall be awarded under this section for a period of

11 more than 3 years. No State shall be eligible for more

12 than 1 grant under this section.

13 (c) AMOUNT OF GRANTS.—

14 (1) GRANTS TO STATES.—

15 (A) FEDERAL MATCHING SHARE.—From

16 amounts appropriated under section 212(a), the

17 Secretary shall pay to each State that has an

18 application approved under section 205, for

19 each year of the grant period, an amount that

20 is—

21 (i) equal to not more than 75 percent

22 of the cost of the systems change activities

23 to be carried out by the State; and

24 (ii) not less than $100,000 and not

25 more than $500,000.
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1 (B) NON-FEDERAL SHARE.—The non-Fed2 eral share of the cost of the systems change ac3 tivities may be in cash or in kind, fairly evalu4 ated, including plant, equipment, or services.

5 (2) CALCULATION OF AMOUNTS.—The Sec6 retary shall calculate a grant amount described in

7 paragraph (1) on the basis of—

8 (A) the amounts available for making

9 grants under this section; and

10 (B) the child population of the State con11 cerned.

12 (d) PRIORITY FOR PREVIOUSLY PARTICIPATING

13 STATES.—For the second and third fiscal years for which

14 amounts are appropriated to carry out this section, the

15 Secretary, in providing payments under this section, shall

16 give priority to States that received payments under this

17 section during the preceding fiscal year.

18 (e) PRIORITIES FOR DISTRIBUTION.—To the extent

19 practicable, the Secretary shall award grants to States

20 under this section in a manner that—

21 (1) is geographically equitable;

22 (2) distributes the grants among States that

23 have differing levels of development of statewide sys24 tems of family support services for families of chil25 dren with disabilities; and
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1 (3) distributes the grants among States that at2 tempt to meet the needs of unserved and under3 served populations, such as individuals from racial

4 and ethnic minority backgrounds, disadvantaged in5 dividuals, individuals with limited English pro6 ficiency, and individuals from underserved geo7 graphic areas (rural or urban).

8 SEC. 205. APPLICATION.

9 To be eligible to receive a grant under this title, a

10 State shall submit an application to the Secretary at such

11 time, in such manner, and containing such information

12 and assurances as the Secretary may require, including

13 information about the designation of a lead entity, a de14 scription of available State resources, and assurances that

15 systems change activities will be family-centered and fam16 ily-directed.

17 SEC. 206. DESIGNATION OF THE LEAD ENTITY.

18 (a) DESIGNATION.—The Chief Executive Officer of

19 a State that desires to receive a grant under section 204,

20 shall designate the office or entity (referred to in this title

21 as the ‘‘lead entity’’) responsible for—

22 (1) submitting the application described in sec23 tion 205 on behalf of the State;

24 (2) administering and supervising the use of the

25 amounts made available under the grant;
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1 (3) coordinating efforts related to and super2 vising the preparation of the application;

3 (4) coordinating the planning, development, im4 plementation (or expansion and enhancement), and

5 evaluation of a statewide system of family support

6 services for families of children with disabilities

7 among public agencies and between public agencies

8 and private agencies, including coordinating efforts

9 related to entering into interagency agreements;

10 (5) coordinating efforts related to the participa11 tion by families of children with disabilities in activi12 ties carried out under a grant made under this title;

13 and

14 (6) submitting the report described in section

15 208 on behalf of the State.

16 (b) QUALIFICATIONS.—In designating the lead entity,

17 the Chief Executive Officer may designate—

18 (1) an office of the Chief Executive Officer;

19 (2) a commission appointed by the Chief Execu20 tive Officer;

21 (3) a public agency;

22 (4) a council established under Federal or State

23 law; or

24 (5) another appropriate office, agency, or enti25 ty.
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1 SEC. 207. AUTHORIZED ACTIVITIES.

2 (a) IN GENERAL.—A State that receives a grant

3 under section 204 shall use the funds made available

4 through the grant to carry out systems change activities

5 that accomplish the purposes of this title.

6 (b) SPECIAL RULE.—In carrying out activities au7 thorized under this title, a State shall ensure that such

8 activities address the needs of families of children with dis9 abilities from unserved or underserved populations.

10 SEC. 208. REPORTING.

11 A State that receives a grant under this title shall

12 prepare and submit to the Secretary, at the end of the

13 grant period, a report containing the results of State ef14 forts to develop and implement, or expand and enhance,

15 a statewide system of family support services for families

16 of children with disabilities.

17 SEC. 209. TECHNICAL ASSISTANCE.

18 (a) IN GENERAL.—The Secretary shall enter into

19 contracts or cooperative agreements with appropriate pub20 lic or private agencies and organizations, including institu21 tions of higher education, with documented experience, ex22 pertise, and capacity, for the purpose of providing tech23 nical assistance and information with respect to the devel24 opment and implementation, or expansion and enhance25 ment, of a statewide system of family support services for

26 families of children with disabilities.
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1 (b) PURPOSE.—An agency or organization that pro2 vides technical assistance and information under this sec3 tion in a State that receives a grant under this title shall

4 provide the technical assistance and information to the

5 lead entity of the State, family members of children with

6 disabilities, organizations, service providers, and policy7 makers involved with children with disabilities and their

8 families. Such an agency or organization may also provide

9 technical assistance and information to a State that does

10 not receive a grant under this title.

11 (c) REPORTS TO THE SECRETARY.—An entity pro12 viding technical assistance and information under this sec13 tion shall prepare and submit to the Secretary periodic

14 reports regarding Federal policies and procedures identi15 fied within the States that facilitate or impede the delivery

16 of family support services to families of children with dis17 abilities. The report shall include recommendations to the

18 Secretary regarding the delivery of services, coordination

19 with other programs, and integration of the policies de20 scribed in section 202 in Federal law, other than this title.

21 SEC. 210. EVALUATION.

22 (a) IN GENERAL.—The Secretary shall conduct a na23 tional evaluation of the program of grants to States au24 thorized by this title.

25 (b) PURPOSE.—
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1 (1) IN GENERAL.—The Secretary shall conduct

2 the evaluation under subsection (a) to assess the sta3 tus and effects of State efforts to develop and imple4 ment, or expand and enhance, statewide systems of

5 family support services for families of children with

6 disabilities in a manner consistent with the provi7 sions of this title. In particular, the Secretary shall

8 assess the impact of such efforts on families of chil9 dren with disabilities, and recommend amendments

10 to this title that are necessary to assist States to ac11 complish fully the purposes of this title.

12 (2) INFORMATION SYSTEMS.—The Secretary

13 shall work with the States to develop an information

14 system designed to compile and report, from infor15 mation provided by the States, qualitative and quan16 titative descriptions of the impact of the program of

17 grants to States authorized by this title on—

18 (A) families of children with disabilities,

19 including families from unserved and under20 served populations;

21 (B) access to and funding for family sup22 port services for families of children with dis23 abilities;
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1 (C) interagency coordination and collabora2 tion between agencies responsible for providing

3 the services; and

4 (D) the involvement of families of children

5 with disabilities at all levels of the statewide

6 systems.

(c) REPORT TO CONGRESS.—Not later than 21 7 ⁄2

8 years after the date of enactment of this Act, the Sec9 retary shall prepare and submit to the appropriate com10 mittees of Congress a report concerning the results of the

11 evaluation conducted under this section.

12 SEC. 211. PROJECTS OF NATIONAL SIGNIFICANCE.

13 (a) STUDY BY THE SECRETARY.—The Secretary

14 shall review Federal programs to determine the extent to

15 which such programs facilitate or impede access to, provi16 sion of, and funding for family support services for fami17 lies of children with disabilities, consistent with the poli18 cies described in section 202.

19 (b) PROJECTS OF NATIONAL SIGNIFICANCE.—The

20 Secretary shall make grants or enter into contracts for

21 projects of national significance to support the develop22 ment of national and State policies and practices related

23 to the development and implementation, or expansion and

24 enhancement, of family-centered and family-directed sys-
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1 tems of family support services for families of children

2 with disabilities.

3 SEC. 212. AUTHORIZATION OF APPROPRIATIONS.

4 (a) IN GENERAL.—There are authorized to be appro5 priated to carry out this title such sums as may be nec6 essary for each of fiscal years 2001 through 2007.

7 (b) RESERVATION.—

8 (1) IN GENERAL.—The Secretary shall reserve

9 for each fiscal year 10 percent, or $400,000 (which10 ever is greater), of the amount appropriated pursu11 ant to subsection (a) to carry out—

12 (A) section 209 (relating to the provision

13 of technical assistance and information to

14 States); and

15 (B) section 210 (relating to the conduct of

16 evaluations).

17 (2) SPECIAL RULE.—For each year that the

18 amount appropriated pursuant to subsection (a) is

19 $10,000,000 or greater, the Secretary may reserve 5

20 percent of such amount to carry out section 211.
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1 TITLE III—PROGRAM FOR DI2 RECT SUPPORT WORKERS

3 WHO ASSIST INDIVIDUALS

4 WITH DEVELOPMENTAL DIS5 ABILITIES

6 SEC. 301. FINDINGS.

7 Congress finds that—

8 (1) direct support workers, especially young

9 adults, have played essential roles in providing the

10 support needed by individuals with developmental

11 disabilities and expanding community options for

12 those individuals;

13 (2) 4 factors have contributed to a decrease in

14 the available pool of direct support workers,

15 specifically—

16 (A) the small population of individuals who

17 are age 18 through 25, an age group that has

18 been attracted to direct support work in the

19 past;

20 (B) the rapid expansion of the service sec21 tor, which attracts individuals who previously

22 would have elected to pursue employment as di23 rect support workers;
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1 (C) the failure of wages in the human serv2 ices sector to keep pace with wages in other

3 service sectors; and

4 (D) the lack of quality training and career

5 advancement opportunities available to direct

6 support workers; and

7 (3) individuals with developmental disabilities

8 benefit from assistance from direct support workers

9 who are well trained, and benefit from receiving

10 services from professionals who have spent time as

11 direct support workers.

12 SEC. 302. DEFINITIONS.

13 In this title:

14 (1) DEVELOPMENTAL DISABILITY.—The term

15 ‘‘developmental disability’’ has the meaning given

16 the term in section 102.

17 (2) INSTITUTION OF HIGHER EDUCATION.—The

18 term ‘‘institution of higher education’’ has the

19 meaning given the term in section 1201 of the High20 er Education Act of 1965 (20 U.S.C. 1141).

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

22 the Secretary of Health and Human Services.

23 SEC. 303. REACHING UP SCHOLARSHIP PROGRAM.

24 (a) PROGRAM AUTHORIZATION.—The Secretary may

25 award grants to eligible entities, on a competitive basis,
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1 to enable the entities to carry out scholarship programs

2 by providing vouchers for postsecondary education to di3 rect support workers who assist individuals with develop4 mental disabilities residing in diverse settings. The Sec5 retary shall award the grants to pay for the Federal share

6 of the cost of providing the vouchers.

7 (b) ELIGIBLE ENTITY.—To be eligible to receive a

8 grant under this section, an entity shall be—

9 (1) an institution of higher education;

10 (2) a State agency; or

11 (3) a consortium of such institutions or agen12 cies.

13 (c) APPLICATION REQUIREMENTS.—To be eligible to

14 receive a grant under this section, an eligible entity shall

15 submit to the Secretary an application at such time, in

16 such manner, and containing such information as the Sec17 retary may require, including a description of—

18 (1) the basis for awarding the vouchers;

19 (2) the number of individuals to receive the

20 vouchers; and

21 (3) the amount of funds that will be made

22 available by the eligible entity to pay for the non23 Federal share of the cost of providing the vouchers.

24 (d) SELECTION CRITERIA.—In awarding a grant

25 under this section for a scholarship program, the Sec-
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1 retary shall give priority to an entity submitting an appli2 cation that—

3 (1) specifies that individuals who receive vouch4 ers through the program will be individuals—

5 (A) who are direct support workers who

6 assist individuals with developmental disabilities

7 residing in diverse settings, while pursuing

8 postsecondary education; and

9 (B) each of whom verifies, prior to receiv10 ing the voucher, that the worker has completed

11 250 hours as a direct support worker in the

12 past 90 days;

13 (2) states that the vouchers that will be pro14 vided through the program will be in amounts of not

15 more than $2,000 per year;

16 (3) provides an assurance that the eligible enti17 ty (or another specified entity that is not a voucher

18 recipient) will contribute the non-Federal share of

19 the cost of providing the vouchers; and

20 (4) meets such other conditions as the Sec21 retary may specify.

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

23 of providing the vouchers shall be not more than 80 per24 cent.
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1 SEC. 304. STAFF DEVELOPMENT CURRICULUM AUTHORIZA2 TION.

3 (a) FUNDING.—

4 (1) IN GENERAL.—The Secretary shall award

5 funding, on a competitive basis, through a grant, co6 operative agreement, or contract, to a public or pri7 vate entity or a combination of such entities, for the

8 development, evaluation, and dissemination of a staff

9 development curriculum, and related guidelines, for

10 computer-assisted, competency-based, multimedia,

11 interactive instruction, relating to service as a direct

12 support worker.

13 (2) PARTICIPANTS.—The curriculum shall be

14 developed for individuals who—

15 (A) seek to become direct support workers

16 who assist individuals with developmental dis17 abilities or are such direct support workers; and

18 (B) seek to upgrade their skills and com19 petencies related to being a direct support

20 worker.

21 (b) APPLICATION REQUIREMENTS.—To be eligible to

22 receive an award under this section, an entity shall submit

23 to the Secretary an application at such time, in such man24 ner, and containing such information as the Secretary may

25 require, including—
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1 (1) a comprehensive analysis of the content of

2 direct support roles;

3 (2) information identifying an advisory group

4 that—

5 (A) is comprised of individuals with experi6 ence and expertise with regard to the support

7 provided by direct support workers, and effec8 tive ways to provide the support, for individuals

9 with developmental disabilities in diverse set10 tings; and

11 (B) will advise the entity throughout the

12 development, evaluation, and dissemination of

13 the staff development curriculum and guide14 lines;

15 (3) information describing how the entity will—

16 (A) develop, field test, and validate a staff

17 development curriculum that—

18 (i) relates to the appropriate reading

19 level for direct service workers who assist

20 individuals with disabilities;

21 (ii) allows for multiple levels of in22 struction;

23 (iii) provides instruction appropriate

24 for direct support workers who work in di25 verse settings; and
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1 (iv) is consistent with subsections (b)

2 and (c) of section 101 and section 109;

3 (B) develop, field test, and validate guide4 lines for the organizations that use the cur5 riculum that provide for—

6 (i) providing necessary technical and

7 instructional support to trainers and men8 tors for the participants;

9 (ii) ensuring easy access to and use of

10 such curriculum by workers that choose to

11 participate in using, and agencies that

12 choose to use, the curriculum;

13 (iii) evaluating the proficiency of the

14 participants with respect to the content of

15 the curriculum;

16 (iv) providing necessary support to the

17 participants to assure that the participants

18 have access to, and proficiency in using, a

19 computer in order to participate in the de20 velopment, testing, and validation process;

21 (v) providing necessary technical and

22 instructional support to trainers and men23 tors for the participants in conjunction

24 with the development, testing, and valida25 tion process;
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1 (vi) addressing the satisfaction of par2 ticipants, individuals with developmental

3 disabilities and their families, providers of

4 services for such individuals and families,

5 and other relevant entities with the cur6 riculum; and

7 (vii) developing methods to maintain a

8 record of the instruction completed, and

9 the content mastered, by each participant

10 under the curriculum; and

11 (C) nationally disseminate the curriculum

12 and guidelines, including dissemination

13 through—

14 (i) parent training and information

15 centers funded under part D of the Indi16 viduals with Disabilities Education Act (20

17 U.S.C. 1451 et seq.);

18 (ii) community-based organizations of

19 and for individuals with developmental dis20 abilities and their families;

21 (iii) entities funded under title I;

22 (iv) centers for independent living;

23 (v) State educational agencies and

24 local educational agencies;
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1 (vi) entities operating appropriate

2 medical facilities;

3 (vii) postsecondary education entities;

4 and

5 (viii) other appropriate entities; and

6 (4) such other information as the Secretary

7 may require.

8 SEC. 305. AUTHORIZATION OF APPROPRIATIONS.

9 (a) SCHOLARSHIPS.—There are authorized to be ap10 propriated to carry out section 303 $800,000 for fiscal

11 year 2001 and such sums as may be necessary for each

12 of fiscal years 2002 through 2007.

13 (b) STAFF DEVELOPMENT CURRICULUM.—There are

14 authorized to be appropriated to carry out section 304

15 $800,000 for fiscal year 2001 and such sums as may be

16 necessary for each of fiscal years 2002 and 2003.

17 TITLE IV—REPEAL

18 SEC. 401. REPEAL.

19 (a) IN GENERAL.—The Developmental Disabilities

20 Assistance and Bill of Rights Act (42 U.S.C. 6000 et seq.)

21 is repealed.

22 (b) CONFORMING AMENDMENTS.—

23 (1) INDIVIDUALS WITH DISABILITIES EDU24 CATION ACT.—Sections 644(b)(4) and 685(b)(4) of

25 the Individuals with Disabilities Education Act (20
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1 U.S.C. 1444(b)(4), 1484a(b)(4)) are amended by

2 striking ‘‘the Developmental Disabilities Assistance

3 and Bill of Rights Act’’ and inserting ‘‘the Develop4 mental Disabilities Assistance and Bill of Rights Act

5 of 1999’’.

6 (2) NATIVE AMERICAN HOUSING ASSISTANCE

7 AND SELF-DETERMINATION ACT OF 1996.—Section

8 4(17)(C) of the Native American Housing Assist9 ance and Self-Determination Act of 1996 (25 U.S.C.

10 4103(17)(C)) is amended by striking ‘‘as defined in’’

11 and all that follows and inserting ‘‘as defined in sec12 tion 102 of the Developmental Disabilities Assist13 ance and Bill of Rights Act of 1999.’’.

14 (3) REHABILITATION ACT OF 1973.—

15 (A) Section 105(c)(6) of the Rehabilitation

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

17 by striking ‘‘the State Developmental Disabil18 ities Council described in section 124 of the De19 velopmental Disabilities Assistance and Bill of

20 Rights Act (42 U.S.C. 6024)’’ and inserting

21 ‘‘the State Council on Developmental Disabil22 ities established under section 125 of the Devel23 opmental Disabilities Assistance and Bill of

24 Rights Act of 1999’’.
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1 (B) Sections 202(h)(2)(D)(iii) and

2 401(a)(5)(A) of the Rehabilitation Act of 1973

3 (29 U.S.C. 762(h)(2)(D)(iii), 781(a)(5)(A)) are

4 amended by striking ‘‘Developmental Disabil5 ities Assistance and Bill of Rights Act (42

6 U.S.C. 6000 et seq.)’’ and inserting ‘‘Develop7 mental Disabilities Assistance and Bill of

8 Rights Act of 1999’’.

9 (C) Subsections (a)(1)(B)(i), (f)(2), and

10 (m)(1) of section 509 of the Rehabilitation Act

11 of 1973 (29 U.S.C. 794e) are amended by

12 striking ‘‘part C of the Developmental Disabil13 ities Assistance and Bill of Rights Act (42

14 U.S.C. 6041 et seq.)’’ and inserting ‘‘subtitle C

15 of the Developmental Disabilities Assistance

16 and Bill of Rights Act of 1999’’.

17 (D) Section 509(f)(5)(B) of the Rehabilita18 tion Act of 1973 (29 U.S.C. 794e(f)(5)(B)) is

19 amended by striking ‘‘Developmental Disabil20 ities Assistance and Bill of Rights Act (42

21 U.S.C. 6000 et seq.)’’ and inserting ‘‘Develop22 mental Disabilities Assistance and Bill of

23 Rights Act of 1999’’.

24 (4) ASSISTIVE TECHNOLOGY ACT OF 1998.—
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1 (A) Section 3(a)(11)(A) of the Assistive

2 Technology Act of 1998 (29 U.S.C.

3 3002(a)(11)(A)) is amended by striking ‘‘part

4 C of the Developmental Disabilities Assistance

5 and Bill of Rights Act (42 U.S.C. 6041 et

6 seq.)’’ and inserting ‘‘subtitle C of the Develop7 mental Disabilities Assistance and Bill of

8 Rights Act of 1999’’.

9 (B) Paragraphs (1) and (2) of section

10 102(a) of the Assistive Technology Act of 1998

11 (29 U.S.C. 3012(a)) are amended by striking

12 ‘‘Developmental Disabilities Assistance and Bill

13 of Rights Act (42 U.S.C. 6000 et seq.)’’ and in14 serting ‘‘Developmental Disabilities Assistance

15 and Bill of Rights Act of 1999’’.

16 (5) HEALTH PROGRAMS EXTENSION ACT OF

17 1973.—Section 401(e) of the Health Programs Ex18 tension Act of 1973 (42 U.S.C. 300a–7(e)) is

19 amended by striking ‘‘or the’’ and all that follows

20 through ‘‘may deny’’ and inserting ‘‘or the Develop21 mental Disabilities Assistance and Bill of Rights Act

22 of 1999 may deny’’.

23 (6) SOCIAL SECURITY ACT.—

24 (A) Section 1919(c)(2)(B)(iii)(III) of the

25 Social Security Act (42 U.S.C.
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•HR 4920 IH

1 1396r(c)(2)(B)(iii)(III)) is amended by striking

2 ‘‘part C of the Developmental Disabilities As3 sistance and Bill of Rights Act’’ and inserting

4 ‘‘subtitle C of the Developmental Disabilities

5 Assistance and Bill of Rights Act of 1999’’.

6 (B) Section 1930(d)(7) of the Social Secu7 rity Act (42 U.S.C. 1396u(d)(7)) is amended by

8 striking ‘‘State Planning Council established

9 under section 124 of the Developmental Dis10 abilities Assistance and Bill of Rights Act, and

11 the Protection and Advocacy System established

12 under section 142 of such Act’’ and inserting

13 ‘‘State Council on Developmental Disabilities

14 established under section 125 of the Develop15 mental Disabilities Assistance and Bill of

16 Rights Act of 1999 and the protection and ad17 vocacy system established under subtitle C of

18 that Act’’.

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

20 Section 3(b)(3)(E)(iii) of the United States Housing

21 Act of 1937 (42 U.S.C. 1437a(b)(3)(E)(iii)) is

22 amended by striking ‘‘developmental disability’’ and

23 all that follows and inserting ‘‘developmental dis24 ability as defined in section 102 of the Develop-
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•HR 4920 IH

1 mental Disabilities Assistance and Bill of Rights Act

2 of 1999.’’.

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

4 of section 501(b)(3) of the Housing Act of 1949 (42

5 U.S.C. 1471(b)(3)) is amended by striking ‘‘develop6 mental disability’’ and all that follows and inserting

7 ‘‘developmental disability as defined in section 102

8 of the Developmental Disabilities Assistance and Bill

9 of Rights Act of 1999.’’.

10 (9) OLDER AMERICANS ACT OF 1965.—

11 (A) Section 203(b)(17) of the Older Amer12 icans Act of 1965 (42 U.S.C. 3013(b)(17)) is

13 amended by striking ‘‘Developmental Disabil14 ities and Bill of Rights Act’’ and inserting ‘‘De15 velopmental Disabilities Assistance and Bill of

16 Rights Act of 1999’’.

17 (B) Section 427(a) of the Older Americans

18 Act of 1965 (42 U.S.C. 3035f(a)) is amended

19 by striking ‘‘part A of the Developmental Dis20 abilities Assistance and Bill of Rights Act (42

21 U.S.C. 6001 et seq.)’’ and inserting ‘‘subtitle C

22 of the Developmental Disabilities Assistance

23 and Bill of Rights Act of 1999’’.

24 (C) Section 429F(a)(1) of the Older Amer25 icans Act of 1965 (42 U.S.C. 3035n(a)(1)) is
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•HR 4920 IH

1 amended by striking ‘‘section 102(5) of the De2 velopmental Disabilities Assistance and Bill of

3 Rights Act (42 U.S.C. 6001(5))’’ and inserting

4 ‘‘section 102 of the Developmental Disabilities

5 Assistance and Bill of Rights Act of 1999’’.

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

7 Americans Act of 1965 (42 U.S.C.

8 3058g(h)(6)(A)) is amended by striking ‘‘part

9 A of the Developmental Disabilities Assistance

10 and Bill of Rights Act (42 U.S.C. 6001 et

11 seq.)’’ and inserting ‘‘subtitle C of the Develop12 mental Disabilities Assistance and Bill of

13 Rights Act of 1999’’.

14 (10) CRIME VICTIMS WITH DISABILITIES

15 AWARENESS ACT.—Section 3 of the Crime Victims

16 With Disabilities Awareness Act (42 U.S.C. 3732

17 note) is amended by striking ‘‘term’’ and all that fol18 lows and inserting the following ‘‘term in section

19 102 of the Developmental Disabilities Assistance

20 and Bill of Rights Act of 1999.’’.

21 (11) CRANSTON-GONZALEZ NATIONAL AFFORD22 ABLE HOUSING ACT.—The third sentence of section

23 811(k)(2) of the Cranston-Gonzalez National Afford24 able Housing Act (42 U.S.C. 8013(k)(2)) is amend25 ed by striking ‘‘as defined’’ and all that follows and
169

•HR 4920 IH

1 inserting ‘‘as defined in section 102 of the Develop2 mental Disabilities Assistance and Bill of Rights Act

3 of 1999.’’.

4 (12) STATE DEPENDENT CARE DEVELOPMENT

5 GRANTS ACT.—Section 670G(3) of the State De6 pendent Care Development Grants Act (42 U.S.C.

7 9877(3)) is amended by striking ‘‘section 102(7) of

8 the Developmental Disabilities Assistance and Bill of

9 Rights Act’’ and inserting ‘‘section 102 of the Devel10 opmental Disabilities Assistance and Bill of Rights

11 Act of 1999’’.

12 (13) PROTECTION AND ADVOCACY FOR MEN13 TALLY ILL INDIVIDUALS ACT OF 1986.—

14 (A) Section 102(2) of the Protection and

15 Advocacy for Mentally Ill Individuals Act of

16 1986 (42 U.S.C. 10802(2)) is amended by

17 striking ‘‘part C of the Developmental Disabil18 ities Assistance and Bill of Rights Act’’ and in19 serting ‘‘subtitle C of the Developmental Dis20 abilities Assistance and Bill of Rights Act of

21 1999’’.

22 (B) Section 114 of the Protection and Ad23 vocacy for Mentally Ill Individuals Act of 1986

24 (42 U.S.C. 10824) is amended by striking ‘‘sec25 tion 107(c) of the Developmental Disabilities
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1 Assistance and Bill of Rights Act’’ and insert2 ing ‘‘section 105 of the Developmental Disabil3 ities Assistance and Bill of Rights Act of

4 1999’’.

5 (14) STEWART B. MCKINNEY HOMELESS AS6 SISTANCE ACT.—Section 422(2)(C) of the Stewart

7 B. McKinney Homeless Assistance Act (42 U.S.C.

8 11382(2)(C)) is amended by striking ‘‘as defined’’

9 and all that follows and inserting ‘‘as defined in sec10 tion 102 of the Developmental Disabilities Assist11 ance and Bill of Rights Act of 1999, or’’.

12 (15) ASSISTED SUICIDE FUNDING RESTRICTION

13 ACT OF 1997.—

14 (A) Section 4 of the Assisted Suicide

15 Funding Restriction Act of 1997 (42 U.S.C.

16 14403) is amended—

17 (i) by striking the section heading and

18 inserting the following:

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

20 CERTAIN GRANT PROGRAMS.’’;

21 and

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

23 the Developmental Disabilities Assistance

24 and Bill of Rights Act’’ and inserting

25 ‘‘subtitle B, D, or E of the Developmental
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1 Disabilities Assistance and Bill of Rights

2 Act of 1999’’.

3 (B) Section 5(b)(1) of the Assisted Suicide

4 Funding Restriction Act of 1997 (42 U.S.C.

5 14404(b)(1)) is amended by striking subpara6 graph (A) and inserting the following:

7 ‘‘(A) PROTECTION AND ADVOCACY SYS8 TEMS UNDER THE DEVELOPMENTAL DISABIL9 ITIES ASSISTANCE AND BILL OF RIGHTS ACT OF

10 1999.—Subtitle C of the Developmental Disabil11 ities Assistance and Bill of Rights Act of

12 1999.’’.

Æ