II

106TH CONGRESS

1ST SESSION S. 1809

To improve service systems for individuals with developmental disabilities,

and for other purposes.

IN THE SENATE OF THE UNITED STATES

OCTOBER 27, 1999

Mr. JEFFORDS (for himself, Mr. KENNEDY, Mr. HARKIN, Mr. FRIST, Ms.

COLLINS, Mr. WELLSTONE, Mr. REED, Mr. DODD, and Mrs. MURRAY)

introduced the following bill; which was read twice and referred to the

Committee on Health, Education, Labor, and Pensions

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 1999’’.

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

8 this Act is as follows:

Sec. 1. Short title; table of contents.
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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.

Sec. 202. Findings, purposes, and policy.

Sec. 203. Definitions and special rule.
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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 are 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 from racial and ethnic minority back10 grounds and their families enjoy increased and

11 meaningful opportunities to access and use commu12 nity services, individualized supports, and other

13 forms of assistance available to other individuals

14 with developmental disabilities and their families;

15 (6) recruitment efforts in disciplines related to

16 developmental disabilities relating to pre-service

17 training, community training, practice, administra18 tion, and policymaking must focus on bringing larg19 er numbers of racial and ethnic minorities into the

20 disciplines in order to provide appropriate skills,

21 knowledge, role models, and sufficient personnel to

22 address the growing needs of an increasingly diverse

23 population;

24 (7) with education and support, communities

25 can be accessible to and responsive to the needs of
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1 individuals with developmental disabilities and their

2 families and are enriched by full and active partici3 pation in community activities, and contributions, by

4 individuals with developmental disabilities and their

5 families;

6 (8) individuals with developmental disabilities

7 have access to opportunities and the necessary sup8 port to be included in community life, have inter9 dependent relationships, live in homes and commu10 nities, and make contributions to their families, com11 munities, and States, and the Nation;

12 (9) efforts undertaken to maintain or expand

13 community-based living options for individuals with

14 disabilities should be monitored in order to deter15 mine and report to appropriate individuals and enti16 ties the extent of access by individuals with develop17 mental disabilities to those options and the extent of

18 compliance by entities providing those options with

19 quality assurance standards;

20 (10) families of children with developmental dis21 abilities need to have access to and use of safe and

22 appropriate child care and before-school and after23 school programs, in the most integrated settings, in

24 order to enrich the participation of the children in

25 community life;
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1 (11) individuals with developmental disabilities

2 need to have access to and use of public transpor3 tation, in order to be independent and directly con4 tribute to and participate in all facets of community

5 life; and

6 (12) individuals with developmental disabilities

7 need to have access to and use of recreational, lei8 sure, and social opportunities in the most integrated

9 settings, in order to enrich their participation in

10 community life.

11 SEC. 102. DEFINITIONS.

12 In this title:

13 (1) AMERICAN INDIAN CONSORTIUM.—The term

14 ‘‘American Indian Consortium’’ means any confed15 eration of 2 or more recognized American Indian

16 tribes, created through the official action of each

17 participating tribe, that has a combined total resi18 dent population of 150,000 enrolled tribal members

19 and a contiguous territory of Indian lands in 2 or

20 more States.

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

22 emphasis’’ means the areas related to quality assur23 ance activities, education activities and early inter24 vention activities, child care-related activities, health25 related activities, employment-related activities,
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1 housing-related activities, transportation-related ac2 tivities, recreation-related activities, and other serv3 ices available or offered to individuals in a commu4 nity, including formal and informal community sup5 ports, that affect their quality of life.

6 (3) ASSISTIVE TECHNOLOGY DEVICE.—The

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

8 piece of equipment, or product system, whether ac9 quired commercially, modified or customized, that is

10 used to increase, maintain, or improve functional ca11 pabilities of individuals with developmental disabil12 ities.

13 (4) ASSISTIVE TECHNOLOGY SERVICE.—The

14 term ‘‘assistive technology service’’ means any serv15 ice that directly assists an individual with a develop16 mental disability in the selection, acquisition, or use

17 of an assistive technology device. Such term

18 includes—

19 (A) conducting an evaluation of the needs

20 of an individual with a developmental disability,

21 including a functional evaluation of the indi22 vidual in the individual’s customary environ23 ment;

24 (B) purchasing, leasing, or otherwise pro25 viding for the acquisition of an assistive tech-
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1 nology device by an individual with a develop2 mental disability;

3 (C) selecting, designing, fitting, custom4 izing, adapting, applying, maintaining, repair5 ing or replacing an assistive technology device;

6 (D) coordinating and using another ther7 apy, intervention, or service with an assistive

8 technology device, such as a therapy, interven9 tion, or service associated with an education or

10 rehabilitation plan or program;

11 (E) providing training or technical assist12 ance for an individual with a developmental dis13 ability, or, where appropriate, a family member,

14 guardian, advocate, or authorized representative

15 of an individual with a developmental disability;

16 and

17 (F) providing training or technical assist18 ance for professionals (including individuals

19 providing education and rehabilitation services),

20 employers, or other individuals who provide

21 services to, employ, or are otherwise substan22 tially involved in the major life functions of, an

23 individual with developmental disabilities.

24 (5) CENTER.—The term ‘‘Center’’ means a

25 University Center for Excellence in Developmental
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1 Disabilities Education, Research, and Service estab2 lished under subtitle D.

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

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

5 capacity building, and systemic change activities

6 that result in families of children with developmental

7 disabilities having access to and use of child care

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

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

10 (7) CULTURALLY COMPETENT.—The term ‘‘cul11 turally competent’’, used with respect to services,

12 supports, or other assistance, means services, sup13 ports, or other assistance that is conducted or pro14 vided in a manner that is responsive to the beliefs,

15 interpersonal styles, attitudes, language, and behav16 iors of individuals who are receiving the services,

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

18 has the greatest likelihood of ensuring their max19 imum participation in the program involved.

20 (8) DEVELOPMENTAL DISABILITY.—

21 (A) IN GENERAL.—The term ‘‘develop22 mental disability’’ means a severe, chronic dis23 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 citizens.

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.