Part A—General Provisions
§15001. Findings, purposes, and policy
(a) Findings
Congress finds that—
(1) disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society;
(2) in 1999, there were between 3,200,000 and 4,500,000 individuals with developmental disabilities in the United States, and recent studies indicate that individuals with developmental disabilities comprise between 1.2 and 1.65 percent of the United States population;
(3) individuals whose disabilities occur during their developmental period frequently have severe disabilities that are likely to continue indefinitely;
(4) individuals with developmental disabilities often encounter discrimination in the provision of critical services, such as services in the areas of emphasis (as defined in
(5) individuals with developmental disabilities are at greater risk than the general population of abuse, neglect, financial and sexual exploitation, and the violation of their legal and human rights;
(6) a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support and services, including access to assistive technology, from generic and specialized service systems, and remain unserved or underserved;
(7) individuals with developmental disabilities often require lifelong community services, individualized supports, and other forms of assistance, that are most effective when provided in a coordinated manner;
(8) there is a need to ensure that services, supports, and other assistance are provided in a culturally competent manner, that ensures that individuals from racial and ethnic minority backgrounds are fully included in all activities provided under this subchapter;
(9) family members, friends, and members of the community can play an important role in enhancing the lives of individuals with developmental disabilities, especially when the family members, friends, and community members are provided with the necessary community services, individualized supports, and other forms of assistance;
(10) current research indicates that 88 percent of individuals with developmental disabilities live with their families or in their own households;
(11) many service delivery systems and communities are not prepared to meet the impending needs of the 479,862 adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve as the primary caregivers of the adults;
(12) in almost every State, individuals with developmental disabilities are waiting for appropriate services in their communities, in the areas of emphasis;
(13) the public needs to be made more aware of the capabilities and competencies of individuals with developmental disabilities, particularly in cases in which the individuals are provided with necessary services, supports, and other assistance;
(14) as increasing numbers of individuals with developmental disabilities are living, learning, working, and participating in all aspects of community life, there is an increasing need for a well trained workforce that is able to provide the services, supports, and other forms of direct assistance required to enable the individuals to carry out those activities;
(15) there needs to be greater effort to recruit individuals from minority backgrounds into professions serving individuals with developmental disabilities and their families;
(16) the goals of the Nation properly include a goal of providing individuals with developmental disabilities with the information, skills, opportunities, and support to—
(A) make informed choices and decisions about their lives;
(B) live in homes and communities in which such individuals can exercise their full rights and responsibilities as citizens;
(C) pursue meaningful and productive lives;
(D) contribute to their families, communities, and States, and the Nation;
(E) have interdependent friendships and relationships with other persons;
(F) live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights; and
(G) achieve full integration and inclusion in society, in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of each individual; and
(17) as the Nation, States, and communities maintain and expand community living options for individuals with developmental disabilities, there is a need to evaluate the access to those options by individuals with developmental disabilities and the effects of those options on individuals with developmental disabilities.
(b) Purpose
The purpose of this subchapter is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this subchapter, including specifically—
(1) State Councils on Developmental Disabilities in each State to engage in advocacy, capacity building, and systemic change activities that—
(A) are consistent with the purpose described in this subsection and the policy described in subsection (c); and
(B) contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families;
(2) protection and advocacy systems in each State to protect the legal and human rights of individuals with developmental disabilities;
(3) University Centers for Excellence in Developmental Disabilities Education, Research, and Service—
(A) to provide interdisciplinary pre-service preparation and continuing education of students and fellows, which may include the preparation and continuing education of leadership, direct service, clinical, or other personnel to strengthen and increase the capacity of States and communities to achieve the purpose of this subchapter;
(B) to provide community services—
(i) that provide training and technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policymakers, students, and other members of the community; and
(ii) that may provide services, supports, and assistance for the persons described in clause (i) through demonstration and model activities;
(C) to conduct research, which may include basic or applied research, evaluation, and the analysis of public policy in areas that affect or could affect, either positively or negatively, individuals with developmental disabilities and their families; and
(D) to disseminate information related to activities undertaken to address the purpose of this subchapter, especially dissemination of information that demonstrates that the network authorized under this part is a national and international resource that includes specific substantive areas of expertise that may be accessed and applied in diverse settings and circumstances; and
(4) funding for—
(A) national initiatives to collect necessary data on issues that are directly or indirectly relevant to the lives of individuals with developmental disabilities;
(B) technical assistance to entities who engage in or intend to engage in activities consistent with the purpose described in this subsection or the policy described in subsection (c); and
(C) other nationally significant activities.
(c) Policy
It is the policy of the United States that all programs, projects, and activities receiving assistance under this subchapter shall be carried out in a manner consistent with the principles that—
(1) individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination, independence, productivity, and integration and inclusion in all facets of community life, but often require the provision of community services, individualized supports, and other forms of assistance;
(2) individuals with developmental disabilities and their families have competencies, capabilities, and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;
(3) individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families;
(4) services, supports, and other assistance should be provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;
(5) specific efforts must be made to ensure that individuals with developmental disabilities from racial and ethnic minority backgrounds and their families enjoy increased and meaningful opportunities to access and use community services, individualized supports, and other forms of assistance available to other individuals with developmental disabilities and their families;
(6) recruitment efforts in disciplines related to developmental disabilities relating to pre-service training, community training, practice, administration, and policymaking must focus on bringing larger numbers of racial and ethnic minorities into the disciplines in order to provide appropriate skills, knowledge, role models, and sufficient personnel to address the growing needs of an increasingly diverse population;
(7) with education and support, communities can be accessible to and responsive to the needs of individuals with developmental disabilities and their families and are enriched by full and active participation in community activities, and contributions, by individuals with developmental disabilities and their families;
(8) individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and States, and the Nation;
(9) efforts undertaken to maintain or expand community-based living options for individuals with disabilities should be monitored in order to determine and report to appropriate individuals and entities the extent of access by individuals with developmental disabilities to those options and the extent of compliance by entities providing those options with quality assurance standards;
(10) families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before-school and after-school programs, in the most integrated settings, in order to enrich the participation of the children in community life;
(11) individuals with developmental disabilities need to have access to and use of public transportation, in order to be independent and directly contribute to and participate in all facets of community life; and
(12) individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings, in order to enrich their participation in community life.
(
Statutory Notes and Related Subsidiaries
Short Title
Special Olympics Sport and Empowerment
"SECTION 1. SHORT TITLE.
"This Act may be cited as the 'Special Olympics Sport and Empowerment Act of 2004'.
"SEC. 2. FINDINGS AND PURPOSE.
"(a)
"(1) Special Olympics celebrates the possibilities of a world where everybody matters, everybody counts, every person has value, and every person has worth.
"(2) The Government and the people of the United States recognize the dignity and value the giftedness of children and adults with an intellectual disability.
"(3) The Government and the people of the United States are determined to end the isolation and stigmatization of people with an intellectual disability.
"(4) For more than 36 years, Special Olympics has encouraged skill, sharing, courage, and joy through year-round sports training and athletic competition for children and adults with intellectual disabilities.
"(5) Special Olympics provides year-round sports training and competitive opportunities to 1,500,000 athletes with intellectual disabilities in 26 sports and plans to expand the joy of participation through sport to hundreds of thousands of people with intellectual disabilities within the United States and worldwide over the next 5 years.
"(6) Special Olympics has demonstrated its ability to provide a major positive effect on the quality of life of people with intellectual disabilities, improving their health and physical well-being, building their confidence and self-esteem, and giving them a voice to become active and productive members of their communities.
"(7) In society as a whole, Special Olympics has become a vehicle and platform for breaking down artificial barriers, improving public health, changing negative attitudes in education, and helping athletes overcome the prejudice that people with intellectual disabilities face in too many places.
"(8) The Government of the United States enthusiastically supports Special Olympics, recognizes its importance in improving the lives of people with intellectual disabilities, and recognizes Special Olympics as a valued and important component of the global community.
"(b)
"(1) provide support to Special Olympics to increase athlete participation in and public awareness about the Special Olympics movement;
"(2) dispel negative stereotypes about people with intellectual disabilities;
"(3) build athletic and family involvement through sport; and
"(4) promote the extraordinary gifts of people with intellectual disabilities.
"SEC. 3. ASSISTANCE FOR SPECIAL OLYMPICS.
"(a)
"(1) Activities to promote the expansion of Special Olympics, including activities to increase the participation of individuals with intellectual disabilities within the United States.
"(2) The design and implementation of Special Olympics education programs, including character education and volunteer programs that support the purposes of this Act, that can be integrated into classroom instruction and are consistent with academic content standards.
"(b)
"(1) Activities to increase the participation of individuals with intellectual disabilities in Special Olympics outside of the United States.
"(2) Activities to improve the awareness outside of the United States of the abilities and unique contributions that individuals with intellectual disabilities can make to society.
"(c)
"(1)
"(2)
"(d)
"SEC. 4. APPLICATION AND ANNUAL REPORT.
"(a)
"(1)
"(2)
"(A)
"(B)
"(b)
"(1)
"(2)
"SEC. 5. AUTHORIZATION OF APPROPRIATIONS.
"There are authorized to be appropriated—
"(1) for grants, contracts, or cooperative agreements under section 3(a), such sums as may be necessary for fiscal year 2017 and each of the 4 succeeding fiscal years;
"(2) for grants, contracts, or cooperative agreements under section 3(b), such sums as may be necessary for fiscal year 2017 and each of the 4 succeeding fiscal years; and
"(3) for grants, contracts, or cooperative agreements under section 3(c), such sums as may be necessary for fiscal year 2017 and each of the 4 succeeding fiscal years."
Executive Documents
Ex. Ord. No. 12994. President's Committee for People with Intellectual Disabilities
Ex. Ord. No. 12994, Mar. 21, 1996, 61 F.R. 13047, as amended by Ex. Ord. No. 13309, July 25, 2003, 68 F.R. 44851; Ex. Ord. No. 13446, §5, Sept. 28, 2007, 72 F.R. 56176, provided:
By the authority vested in me as President by the Constitution and the laws of the United States of America, and in order to promote full participation of people with intellectual disabilities in their communities, it is hereby ordered as follows:
(1) The Attorney General;
(2) The Secretary of the Interior;
(3) The Secretary of Commerce;
(4) The Secretary of Labor;
(5) The Secretary of Health and Human Services;
(6) The Secretary of Housing and Urban Development;
(7) The Secretary of Transportation;
(8) The Secretary of Education;
(9) The Secretary of Homeland Security;
(10) The Chief Executive Officer of the Corporation for National and Community Service;
(11) The Commissioner of Social Security;
(12) The Chairman of the Equal Employment Opportunity Commission;
(13) The Chairperson of the National Council on Disability; and
(14) No more than 21 other members who shall be appointed to the Committee by the President. These citizen members shall consist of individuals who represent a broad spectrum of perspectives, experience, and expertise on intellectual disabilities; persons with intellectual disabilities and members of families with a child or adult with intellectual disabilities; and persons employed in either the public or the private sector. Except as the President may from time to time otherwise direct, appointees under this paragraph shall serve for two-year terms, except that an appointment made to fill a vacancy occurring before the expiration of a term shall be made for the balance of the unexpired term.
(b) The President shall designate the Chair of the Committee from the 21 citizen members. The Chair shall preside over meetings of the Committee and represent the Committee on appropriate occasions.
(1) provide such advice concerning intellectual disabilities as the President or the Secretary of Health and Human Services may request; and
(2) provide advice to the President concerning the following for people with intellectual disabilities:
(A) expansion of educational opportunities;
(B) promotion of homeownership;
(C) assurance of workplace integration;
(D) improvement of transportation options;
(E) expansion of full access to community living; and
(F) increasing access to assistive and universally designed technologies.
(b) The Committee shall provide an annual report to the President through the Secretary of Health and Human Services. Such additional reports may be made as the President may direct or as the Committee may deem appropriate.
(c) The members shall advise the President and carry out their advisory role consistent with the requirements of the Federal Advisory Committee Act, as amended ([former] 5 U.S.C. App.) [see
(a) designate, when requested by the Secretary of Health and Human Services, an officer or employee of such department or agency to serve as a liaison with the Committee; and
(b) furnish such information and assistance to the Committee, to the extent permitted by law, as the Secretary of Health and Human Services may request to assist the Committee in performing its functions under this order.
(b) Each member of the Committee, except any member who receives other compensation from the United States Government, may receive compensation for each day engaged in the work of the Committee, as authorized by law (
(c) The Secretary of Health and Human Services shall perform such other functions with respect to the Committee as may be required by the Federal Advisory Committee Act, as amended ([former] 5 U.S.C. App.) [see
(b) This order is not intended to, and does not, create any right or benefit, substantive or procedural, enforceable at law or in equity by any party against the United States, its departments, agencies, instrumentalities, or entities, its officers or employees, or any other person.
Extension of Term of President's Committee for People with Intellectual Disabilities
Term of the President's Committee for People with Intellectual Disabilities extended until Sept. 30, 2025, by Ex. Ord. No. 14109, Sept. 29, 2023, 88 F.R. 68447, set out as a note under
Previous extensions of term of the President's Committee for People with Intellectual Disabilities (formerly President's Committee on Mental Retardation) were contained in the following prior Executive Orders:
Ex. Ord. No. 14048, Sept. 30, 2021, 86 F.R. 55465, extended term until Sept. 30, 2023.
Ex. Ord. No. 13889, Sept. 27, 2019, 84 F.R. 52743, extended term until Sept. 30, 2021.
Ex. Ord. No. 13811, Sept. 29, 2017, 82 F.R. 46363, extended term until Sept. 30, 2019.
Ex. Ord. No. 13708, Sept. 30, 2015, 80 F.R. 60271, extended term until Sept. 30, 2017.
Ex. Ord. No. 13652, Sept. 30, 2013, 78 F.R. 61817, extended term until Sept. 30, 2015.
Ex. Ord. No. 13585, Sept. 30, 2011, 76 F.R. 62281, extended term until Sept. 30, 2013.
Ex. Ord. No. 13511, Sept. 29, 2009, 74 F.R. 50909, extended term until Sept. 30, 2011.
Ex. Ord. No. 13446, Sept. 28, 2007, 72 F.R. 56175, extended term until Sept. 30, 2009.
Ex. Ord. No. 13385, Sept. 29, 2005, 70 F.R. 57989, extended term until Sept. 30, 2007.
Ex. Ord. No. 13309, §5, July 25, 2003, 68 F.R. 44851, changed name to Committee for People with Intellectual Disabilities and extended term until Sept. 30, 2005.
Ex. Ord. No. 13225, Sept. 28, 2001, 66 F.R. 50291, extended term until Sept. 30, 2003.
Ex. Ord. No. 13138, Sept. 30, 1999, 64 F.R. 53879, extended term until Sept. 30, 2001.
Ex. Ord. No. 13062, §1(k), Sept. 29, 1997, 62 F.R. 51755, extended term until Sept. 30, 1999.
Ex. Ord. No. 12974, Sept. 29, 1995, 60 F.R. 51875, extended term until Sept. 30, 1997.
Ex. Ord. No. 12869, Sept. 30, 1993, 58 F.R. 51751, extended term until Sept. 30, 1995.
Ex. Ord. No. 12774, Sept. 27, 1991, 56 F.R. 49835, extended term until Sept. 30, 1993.
Ex. Ord. No. 12692, Sept. 29, 1989, 54 F.R. 40627, extended term until Sept. 30, 1991.
Ex. Ord. No. 12610, Sept. 30, 1987, 52 F.R. 36901, extended term until Sept. 30, 1989.
Ex. Ord. No. 12534, Sept. 30, 1985, 50 F.R. 40319, extended term until Sept. 30, 1987.
Ex. Ord. No. 12489, Sept. 28, 1984, 49 F.R. 38927, extended term until Sept. 30, 1985.
Ex. Ord. No. 12399, Dec. 31, 1982, 48 F.R. 379, extended term until Sept. 30, 1984.
Ex. Ord. No. 12258, Dec. 31, 1980, 46 F.R. 1251, extended term of President's Committee on Mental Retardation until Dec. 31, 1982.
§15002. Definitions
In this subchapter:
(1) American Indian Consortium
The term "American Indian Consortium" means any confederation of 2 or more recognized American Indian tribes, created through the official action of each participating tribe, that has a combined total resident population of 150,000 enrolled tribal members and a contiguous territory of Indian lands in 2 or more States.
(2) Areas of emphasis
The term "areas of emphasis" means the areas related to quality assurance activities, education activities and early intervention activities, child care-related activities, health-related activities, employment-related activities, housing-related activities, transportation-related activities, recreation-related activities, and other services available or offered to individuals in a community, including formal and informal community supports, that affect their quality of life.
(3) Assistive technology device
The term "assistive technology device" means any item, piece of equipment, or product system, whether acquired commercially, modified or customized, that is used to increase, maintain, or improve functional capabilities of individuals with developmental disabilities.
(4) Assistive technology service
The term "assistive technology service" means any service that directly assists an individual with a developmental disability in the selection, acquisition, or use of an assistive technology device. Such term includes—
(A) conducting an evaluation of the needs of an individual with a developmental disability, including a functional evaluation of the individual in the individual's customary environment;
(B) purchasing, leasing, or otherwise providing for the acquisition of an assistive technology device by an individual with a developmental disability;
(C) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing or replacing an assistive technology device;
(D) coordinating and using another therapy, intervention, or service with an assistive technology device, such as a therapy, intervention, or service associated with an education or rehabilitation plan or program;
(E) providing training or technical assistance for an individual with a developmental disability, or, where appropriate, a family member, guardian, advocate, or authorized representative of an individual with a developmental disability; and
(F) providing training or technical assistance for professionals (including individuals providing education and rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of, an individual with developmental disabilities.
(5) Center
The term "Center" means a University Center for Excellence in Developmental Disabilities Education, Research, and Service established under part D.
(6) Child care-related activities
The term "child care-related activities" means advocacy, capacity building, and systemic change activities that result in families of children with developmental disabilities having access to and use of child care services, including before-school, after-school, and out-of-school services, in their communities.
(7) Culturally competent
The term "culturally competent", used with respect to services, supports, or other assistance, means services, supports, or other assistance that is conducted or provided in a manner that is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals who are receiving the services, supports, or other assistance, and in a manner that has the greatest likelihood of ensuring their maximum participation in the program involved.
(8) Developmental disability
(A) In general
The term "developmental disability" means a severe, chronic disability of an individual that—
(i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
(ii) is manifested before the individual attains age 22;
(iii) is likely to continue indefinitely;
(iv) results in substantial functional limitations in 3 or more of the following areas of major life activity:
(I) Self-care.
(II) Receptive and expressive language.
(III) Learning.
(IV) Mobility.
(V) Self-direction.
(VI) Capacity for independent living.
(VII) Economic self-sufficiency; and
(v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.
(B) Infants and young children
An individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described in clauses (i) through (v) of subparagraph (A) if the individual, without services and supports, has a high probability of meeting those criteria later in life.
(9) Early intervention activities
The term "early intervention activities" means advocacy, capacity building, and systemic change activities provided to individuals described in paragraph (8)(B) and their families to enhance—
(A) the development of the individuals to maximize their potential; and
(B) the capacity of families to meet the special needs of the individuals.
(10) Education activities
The term "education activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities being able to access appropriate supports and modifications when necessary, to maximize their educational potential, to benefit from lifelong educational activities, and to be integrated and included in all facets of student life.
(11) Employment-related activities
The term "employment-related activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities acquiring, retaining, or advancing in paid employment, including supported employment or self-employment, in integrated settings in a community.
(12) Family support services
(A) In general
The term "family support services" means services, supports, and other assistance, provided to families with members who have developmental disabilities, that are designed to—
(i) strengthen the family's role as primary caregiver;
(ii) prevent inappropriate out-of-the-home placement of the members and maintain family unity; and
(iii) reunite families with members who have been placed out of the home whenever possible.
(B) Specific services
Such term includes respite care, provision of rehabilitation technology and assistive technology, personal assistance services, parent training and counseling, support for families headed by aging caregivers, vehicular and home modifications, and assistance with extraordinary expenses, associated with the needs of individuals with developmental disabilities.
(13) Health-related activities
The term "health-related activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities having access to and use of coordinated health, dental, mental health, and other human and social services, including prevention activities, in their communities.
(14) Housing-related activities
The term "housing-related activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities having access to and use of housing and housing supports and services in their communities, including assistance related to renting, owning, or modifying an apartment or home.
(15) Inclusion
The term "inclusion", used with respect to individuals with developmental disabilities, means the acceptance and encouragement of the presence and participation of individuals with developmental disabilities, by individuals without disabilities, in social, educational, work, and community activities, that enables individuals with developmental disabilities to—
(A) have friendships and relationships with individuals and families of their own choice;
(B) live in homes close to community resources, with regular contact with individuals without disabilities in their communities;
(C) enjoy full access to and active participation in the same community activities and types of employment as individuals without disabilities; and
(D) take full advantage of their integration into the same community resources as individuals without disabilities, living, learning, working, and enjoying life in regular contact with individuals without disabilities.
(16) Individualized supports
The term "individualized supports" means supports that—
(A) enable an individual with a developmental disability to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community life;
(B) are designed to—
(i) enable such individual to control such individual's environment, permitting the most independent life possible;
(ii) prevent placement into a more restrictive living arrangement than is necessary; and
(iii) enable such individual to live, learn, work, and enjoy life in the community; and
(C) include—
(i) early intervention services;
(ii) respite care;
(iii) personal assistance services;
(iv) family support services;
(v) supported employment services;
(vi) support services for families headed by aging caregivers of individuals with developmental disabilities; and
(vii) provision of rehabilitation technology and assistive technology, and assistive technology services.
(17) Integration
The term "integration", used with respect to individuals with developmental disabilities, means exercising the equal right of individuals with developmental disabilities to access and use the same community resources as are used by and available to other individuals.
(18) Not-for-profit
The term "not-for-profit", used with respect to an agency, institution, or organization, means an agency, institution, or organization that is owned or operated by 1 or more corporations or associations, no part of the net earnings of which inures, or may lawfully inure, to the benefit of any private shareholder or individual.
(19) Personal assistance services
The term "personal assistance services" means a range of services, provided by 1 or more individuals, designed to assist an individual with a disability to perform daily activities, including activities on or off a job that such individual would typically perform if such individual did not have a disability. Such services shall be designed to increase such individual's control in life and ability to perform everyday activities, including activities on or off a job.
(20) Prevention activities
The term "prevention activities" means activities that address the causes of developmental disabilities and the exacerbation of functional limitation, such as activities that—
(A) eliminate or reduce the factors that cause or predispose individuals to developmental disabilities or that increase the prevalence of developmental disabilities;
(B) increase the early identification of problems to eliminate circumstances that create or increase functional limitations; and
(C) mitigate against the effects of developmental disabilities throughout the lifespan of an individual.
(21) Productivity
The term "productivity" means—
(A) engagement in income-producing work that is measured by increased income, improved employment status, or job advancement; or
(B) engagement in work that contributes to a household or community.
(22) Protection and advocacy system
The term "protection and advocacy system" means a protection and advocacy system established in accordance with
(23) Quality assurance activities
The term "quality assurance activities" means advocacy, capacity building, and systemic change activities that result in improved consumer- and family-centered quality assurance and that result in systems of quality assurance and consumer protection that—
(A) include monitoring of services, supports, and assistance provided to an individual with developmental disabilities that ensures that the individual—
(i) will not experience abuse, neglect, sexual or financial exploitation, or violation of legal or human rights; and
(ii) will not be subject to the inappropriate use of restraints or seclusion;
(B) include training in leadership, self-advocacy, and self-determination for individuals with developmental disabilities, their families, and their guardians to ensure that those individuals—
(i) will not experience abuse, neglect, sexual or financial exploitation, or violation of legal or human rights; and
(ii) will not be subject to the inappropriate use of restraints or seclusion; or
(C) include activities related to interagency coordination and systems integration that result in improved and enhanced services, supports, and other assistance that contribute to and protect the self-determination, independence, productivity, and integration and inclusion in all facets of community life, of individuals with developmental disabilities.
(24) Recreation-related activities
The term "recreation-related activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities having access to and use of recreational, leisure, and social activities, in their communities.
(25) Rehabilitation technology
The term "rehabilitation technology" means the systematic application of technologies, engineering methodologies, or scientific principles to meet the needs of, and address the barriers confronted by, individuals with developmental disabilities in areas that include education, rehabilitation, employment, transportation, independent living, and recreation. Such term includes rehabilitation engineering, and the provision of assistive technology devices and assistive technology services.
(26) Secretary
The term "Secretary" means the Secretary of Health and Human Services.
(27) Self-determination activities
The term "self-determination activities" means activities that result in individuals with developmental disabilities, with appropriate assistance, having—
(A) the ability and opportunity to communicate and make personal decisions;
(B) the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individuals receive;
(C) the authority to control resources to obtain needed services, supports, and other assistance;
(D) opportunities to participate in, and contribute to, their communities; and
(E) support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.
(28) State
The term "State", except as otherwise provided, includes, in addition to each of the several States of the United States, the District of Columbia, the Commonwealth of Puerto Rico, the United States Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands.
(29) State Council on Developmental Disabilities
The term "State Council on Developmental Disabilities" means a Council established under
(30) Supported employment services
The term "supported employment services" means services that enable individuals with developmental disabilities to perform competitive work in integrated work settings, in the case of individuals with developmental disabilities—
(A)(i) for whom competitive employment has not traditionally occurred; or
(ii) for whom competitive employment has been interrupted or intermittent as a result of significant disabilities; and
(B) who, because of the nature and severity of their disabilities, need intensive supported employment services or extended services in order to perform such work.
(31) Transportation-related activities
The term "transportation-related activities" means advocacy, capacity building, and systemic change activities that result in individuals with developmental disabilities having access to and use of transportation.
(32) Unserved and underserved
The term "unserved and underserved" includes populations such as individuals from racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals from underserved geographic areas (rural or urban), and specific groups of individuals within the population of individuals with developmental disabilities, including individuals who require assistive technology in order to participate in and contribute to community life.
(
§15003. Records and audits
(a) Records
Each recipient of assistance under this subchapter shall keep such records as the Secretary shall prescribe, including—
(1) records that fully disclose—
(A) the amount and disposition by such recipient of the assistance;
(B) the total cost of the project or undertaking in connection with which such assistance is given or used; and
(C) the amount of that portion of the cost of the project or undertaking that is supplied by other sources; and
(2) such other records as will facilitate an effective audit.
(b) Access
The Secretary and the Comptroller General of the United States, or any of their duly authorized representatives, shall have access for the purpose of audit and examination to any books, documents, papers, and records of the recipients of assistance under this subchapter that are pertinent to such assistance.
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§15004. Responsibilities of the Secretary
(a) Program accountability
(1) In general
In order to monitor entities that received funds under this chapter to carry out activities under parts B, C, and D and determine the extent to which the entities have been responsive to the purpose of this subchapter and have taken actions consistent with the policy described in
(2) Areas of emphasis
The Secretary shall develop a process for identifying and reporting (pursuant to
(3) Indicators of progress
(A) In general
In identifying progress made by the entities described in paragraph (1) in the areas of emphasis, the Secretary, in consultation with the Commissioner of the Administration on Developmental Disabilities and the entities, shall develop indicators for each area of emphasis.
(B) Proposed indicators
Not later than 180 days after October 30, 2000, the Secretary shall develop and publish in the Federal Register for public comment proposed indicators of progress for monitoring how entities described in paragraph (1) have addressed the areas of emphasis described in paragraph (2) in a manner that is responsive to the purpose of this subchapter and consistent with the policy described in
(C) Final indicators
Not later than October 1, 2001, the Secretary shall revise the proposed indicators of progress, to the extent necessary based on public comment, and publish final indicators of progress in the Federal Register.
(D) Specific measures
At a minimum, the indicators of progress shall be used to describe and measure—
(i) the satisfaction of individuals with developmental disabilities with the advocacy, capacity building, and systemic change activities provided under parts B, C, and D;
(ii) the extent to which the advocacy, capacity building, and systemic change activities provided through parts B, C, and D result in improvements in—
(I) the ability of individuals with developmental disabilities to make choices and exert control over the type, intensity, and timing of services, supports, and assistance that the individuals have used;
(II) the ability of individuals with developmental disabilities to participate in the full range of community life with persons of the individuals' choice; and
(III) the ability of individuals with developmental disabilities to access services, supports, and assistance in a manner that ensures that such an individual is free from abuse, neglect, sexual and financial exploitation, violation of legal and human rights, and the inappropriate use of restraints and seclusion; and
(iii) the extent to which the entities described in paragraph (1) collaborate with each other to achieve the purpose of this subchapter and the policy described in
(4) Time line for compliance with indicators of progress
The Secretary shall require entities described in paragraph (1) to meet the indicators of progress described in paragraph (3). For fiscal year 2002 and each year thereafter, the Secretary shall apply the indicators in monitoring entities described in paragraph (1), with respect to activities conducted after October 1, 2001.
(b) Time line for regulations
Except as otherwise expressly provided in this subchapter, the Secretary, not later than 1 year after October 30, 2000, shall promulgate such regulations as may be required for the implementation of this subchapter.
(c) Interagency committee
(1) In general
The Secretary shall maintain the interagency committee authorized in
(2) Composition
The interagency committee shall be composed of representatives of—
(A) the Administration on Developmental Disabilities, the Administration on Children, Youth, and Families, the Administration on Aging, and the Health Resources and Services Administration, of the Department of Health and Human Services; and
(B) such other Federal departments and agencies as the Secretary of Health and Human Services considers to be appropriate.
(3) Duties
Such interagency committee shall meet regularly to coordinate and plan activities conducted by Federal departments and agencies for individuals with developmental disabilities.
(4) Meetings
Each meeting of the interagency committee (except for any meetings of any subcommittees of the committee) shall be open to the public. Notice of each meeting, and a statement of the agenda for the meeting, shall be published in the Federal Register not later than 14 days before the date on which the meeting is to occur.
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Editorial Notes
References in Text
This chapter, referred to in subsec. (a)(1), was in the original "this Act", meaning
§15005. Reports of the Secretary
At least once every 2 years, the Secretary, using information submitted in the reports and information required under parts B, C, D, and E, shall prepare and submit to the President, Congress, and the National Council on Disability, a report that describes the goals and outcomes of programs supported under parts B, C, D, and E. In preparing the report, the Secretary shall provide—
(1) meaningful examples of how the councils, protection and advocacy systems, centers, and entities funded under parts B, C, D, and E, respectively—
(A) have undertaken coordinated activities with each other;
(B) have enhanced the ability of individuals with developmental disabilities and their families to participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life;
(C) have brought about advocacy, capacity building, and systemic change activities (including policy reform), and other actions on behalf of individuals with developmental disabilities and their families, including individuals who are traditionally unserved or underserved, particularly individuals who are members of ethnic and racial minority groups and individuals from underserved geographic areas; and
(D) have brought about advocacy, capacity building, and systemic change activities that affect individuals with disabilities other than individuals with developmental disabilities;
(2) information on the extent to which programs authorized under this subchapter have addressed—
(A) protecting individuals with developmental disabilities from abuse, neglect, sexual and financial exploitation, and violations of legal and human rights, so that those individuals are at no greater risk of harm than other persons in the general population; and
(B) reports of deaths of and serious injuries to individuals with developmental disabilities; and
(3) a summary of any incidents of noncompliance of the programs authorized under this subchapter with the provisions of this subchapter, and corrections made or actions taken to obtain compliance.
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§15006. State control of operations
Except as otherwise specifically provided, nothing in this subchapter shall be construed as conferring on any Federal officer or employee the right to exercise any supervision or control over the administration, personnel, maintenance, or operation of any programs, services, and supports for individuals with developmental disabilities with respect to which any funds have been or may be expended under this subchapter.
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§15007. Employment of individuals with disabilities
As a condition of providing assistance under this subchapter, the Secretary shall require that each recipient of such assistance take affirmative action to employ and advance in employment qualified individuals with disabilities on the same terms and conditions required with respect to the employment of such individuals under the provisions of title V of the Rehabilitation Act of 1973 (
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Editorial Notes
References in Text
The Rehabilitation Act of 1973, referred to in text, is
The Americans with Disabilities Act of 1990, referred to in text, is
§15008. Construction
Nothing in this subchapter shall be construed to preclude an entity funded under this subchapter from engaging in advocacy, capacity building, and systemic change activities for individuals with developmental disabilities that may also have a positive impact on individuals with other disabilities.
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§15009. Rights of individuals with developmental disabilities
(a) In general
Congress makes the following findings respecting the rights of individuals with developmental disabilities:
(1) Individuals with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities, consistent with
(2) The treatment, services, and habitation 1 for an individual with developmental disabilities should be designed to maximize the potential of the individual and should be provided in the setting that is least restrictive of the individual's personal liberty.
(3) The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that—
(A) provide treatment, services, and habilitation that are appropriate to the needs of such individuals; and
(B) meet minimum standards relating to—
(i) provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population;
(ii) provision to such individuals of appropriate and sufficient medical and dental services;
(iii) prohibition of the use of physical restraint and seclusion for such an individual unless absolutely necessary to ensure the immediate physical safety of the individual or others, and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program;
(iv) prohibition of the excessive use of chemical restraints on such individuals and the use of such restraints as punishment or as a substitute for a habilitation program or in quantities that interfere with services, treatment, or habilitation for such individuals; and
(v) provision for close relatives or guardians of such individuals to visit the individuals without prior notice.
(4) All programs for individuals with developmental disabilities should meet standards—
(A) that are designed to assure the most favorable possible outcome for those served; and
(B)(i) in the case of residential programs serving individuals in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, that are at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded, promulgated in regulations of the Secretary on June 3, 1988, as appropriate, taking into account the size of the institutions and the service delivery arrangements of the facilities of the programs;
(ii) in the case of other residential programs for individuals with developmental disabilities, that assure that—
(I) care is appropriate to the needs of the individuals being served by such programs;
(II) the individuals admitted to facilities of such programs are individuals whose needs can be met through services provided by such facilities; and
(III) the facilities of such programs provide for the humane care of the residents of the facilities, are sanitary, and protect their rights; and
(iii) in the case of nonresidential programs, that assure that the care provided by such programs is appropriate to the individuals served by the programs.
(b) Clarification
The rights of individuals with developmental disabilities described in findings made in this section shall be considered to be in addition to any constitutional or other rights otherwise afforded to all individuals.
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