Living Independently and in the Community: 

Implementation Lessons from the United States 

National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

Lex Frieden, Chairperson 

Publication date: August 2, 2005 

Foreword 

The National Council on Disability is an independent federal agency with 15 members appointed 

by the President of the United States and confirmed by the U.S. Senate. The overall purpose of 

NCD is to promote policies, programs, practices, and procedures that guarantee equal 

opportunity for all individuals with disabilities regardless of the nature or significance of the 

disability and to empower individuals with disabilities to achieve economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society. This topic paper is 

part of a series of topic papers designed to provide brief background information on United 

States disability policy for use by the delegates in their deliberations on the United Nations Ad 

Hoc Committee on a Comprehensive and Integral International Convention on the Protection and 

Promotion of the Rights and Dignity of Persons with Disabilities. 

I. Introduction 

Living independently and in the community are preconditions for the enjoyment of 

human rights by people with disabilities and represent core values of the American disability 

community. Ensuring that people with disabilities have the opportunity and appropriate supports 

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to live how they choose, where they choose, and with whom they choose is a major focus of 

disability advocacy in the United States, as well as in other countries around the world. 

Significantly, the convention on the human rights of people with disabilities, under negotiation at 

the United Nations, includes a draft article (Article 15), on living independently and in the 

community. 

Many people with disabilities throughout the world are segregated in institutions, isolated 

in their homes, or in other ways disconnected from full and meaningful participation in their 

communities. Moreover, they often are unable to conduct their lives in ways that reflect their 

personal choices. Institutionalization is sometimes presented as the only option for receiving 

assistance with core activities of everyday living, yet people with disabilities can live in the 

community with appropriate long-term services and formal and informal supports. Recognition 

of the challenge to end institutional bias – and related forms of isolation and exclusion – and the 

creation of meaningful and affordable opportunities to receive community-based long-term 

services and supports will make living independently and in the community a reality for people 

with disabilities. 

This paper seeks to: 

• outline key concepts central to the understanding of living independently and in 

the community as expressed by the American disability community; 

• identify the principal barriers that impede the enjoyment of living independently 

and in the community by people with disabilities; 

• provide a summary overview of the existing international legal framework that 

promotes living independently and in the community; 

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• identify examples drawn from the American law and policy context that advance 

living independently and in the community; and 

• provide a tool for assessing implementation of these rights in anticipation that 

they will be given full expression in the drafting of a convention on the rights of 

people with disabilities. 

II. Understanding Living Independently and in the Community 

The concepts expressed by the phrase “living independently and in the community” are 

associated with the independent living movement begun in the 1970s in the United States, and 

also initiated in other countries around the world from that period onward.i

 These advocacy 

developments were in response to the practice of isolating individuals with disabilities in 

congregate institutions where they were distanced and utterly disconnected from their 

communities. First, the movement sought to overturn the traditional assumptions of the medical 

and charity models of disability so often used to justify exclusion from community life.ii It 

recognized “that the barriers that confront people with disabilities are less related to individual 

impairment than to societal attitudes, interpretations of disability, architectural barriers, legal 

barriers, and educational barriers.”iii Second, in keeping with a more functional approach to 

disability, people with disabilities based their advocacy on principles of autonomy and individual 

self-determination, participation in decision-making and consumer direction, choice, and 

community integration.iv In sum, living independently and in the community “means being in 

control of one’s life, choosing one’s own goals and activities, and ultimately defining one’s own 

goals and activities, including the tools, strategies, and people or animal supports necessary to 

accomplish any given task or objective.”v 

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The event that initiated the implementation of this vision was the establishment of the 

nation’s first independent living center in Berkeley, California. The center, and the hundreds 

that developed thereafter, offered a range of services to facilitate living in the community, with 

appropriate “consumer driven” supports.vi These supports included, among others, peer 

counseling, advocacy services, accessible transportation, training in independent living skills, 

wheelchair repair, housing referrals, and personal assistant referrals.vii 

While the American independent living movement emerged initially as a means of 

achieving the aims of people with physical disabilities, its basic premises influenced disability 

rights advocacy across the disability spectrum. During the 1990s, the self-advocacy movement 

by people with intellectual disabilities emerged and continues to develop, both in the United 

States and, increasingly, in many other countries.viii The drive for “self-determination” among 

people with psycho-social disabilities is another important manifestation of self-representation 

and independence among a historically marginalized sector of the disability community.ix 

The primary aim of the independent living movement is for people with disabilities to 

achieve the capacity to live in their homes and communities in accordance with their own 

wishes, and therefore “independently.”x

 This does not imply that individuals will perform daily 

tasks without the assistance of others. One can still retain control over decision-making, 

notwithstanding functional limitations that require the assistance of another person or an assistive 

device or other supports. Above all, living independently and in the community supports the 

right to live a life outside of institutions, where barriers for full social inclusion are removed and 

the necessary technical aids and personal assistance are provided.”xi The goal is for people with 

disabilities to live independently in community with others; this does not preclude family living 

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or other communal arrangements. It is about choice, autonomy, and participation, not separation 

from families. 

III. Persistent Barriers to Living Independently and in the Community 

Researchers have documented the medicalization of disability and the building of 

custodial residential institutions during the early industrial age and period of urbanization in the 

West.xii People with disabilities were separated from their families and communities and, more 

generally, from full participation in society. This segregation manifested itself in the building of 

mental institutions for people with psycho-social and intellectual disabilities, rehabilitation 

centers and special education schools. The egregious abuses that so often accompany 

congregate custodial arrangements have been well-documented, as has the near impossibility of 

providing for the full enjoyment of civil, political, economic, social and cultural rights within 

institutions, irrespective of the conditions.xiii Isolation and abuse within institutions is certainly 

not the only form of community exclusion facing people with disabilities. People with 

disabilities around the world too often are isolated within their homes, even locked away in back 

closets or basements, and are unable to participate in the life of their communities or make even 

the most basic decisions about their everyday lives. Persistent barriers to living independently 

and in the community remain, and form the basis for disability rights advocacy both in the 

United States and in countries around the world. 

In 2003, the National Council on Disability released an extensive report that identifies the 

many barriers confronting Americans with disabilities in their efforts to live independently and 

in the community.xiv The report is based on extensive consultation with representatives from all 

disability groups who identified the following principal obstacles to living independently and 

achieving community integration for people with disabilities: 

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• Lack of affordable or physically accessible housing 

• Qualified support staff 

• Parent/guardian opposition 

• Lack of affordable and accessible transportation 

• Lack of adequate medical or dental care 

• Neighborhood opposition 

• Lack of jobs, job training and supported employment 

• Lack of residential services 

• Lack of day services 

IV. International Human Rights Law and Living Independently and in the Community 

In many respects, the international human rights system is geared towards ensuring that all 

people have the opportunity to live their lives in dignity and in a way that ensures the 

development of their full potential. In this sense, human rights law is an important source for 

addressing the barriers that people with disabilities face in living self-determined lives. For 

example, principles of non-discrimination and equality are among the most well-established 

human rights obligations and certainly apply without exception to people with disabilities.xv 

Similarly well-grounded are principles of participation and autonomy.xvi 

Non-discrimination principles under international law go well beyond prohibiting laws that 

explicitly or purposefully exclude or deny opportunities to people with disabilities. The UN 

Committee on Economic, Social and Cultural Rights, the body that monitors implementation of 

the International Covenant on Economic, Social and Cultural Rights,xvii has emphasized that 

States are under an obligation to protect against discrimination and, to that end, must adopt 

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policies to “enable persons with disabilities to live an integrated, self-determined and 

independent life.”xviii According to the Committee, 

Both de jure and de facto discrimination against persons with disabilities have a long 

history and take various forms. They range from invidious discrimination, such as the 

denial of educational opportunities, to more “subtle” forms of discrimination, such as 

segregation and isolation achieved through the imposition of physical and social barriers. 

...the effects of disability-based discrimination have been particularly severe in the fields 

of education, employment, housing, transport, cultural life, and access to public places 

and services.xix 

Other international documents relating to disability have stressed that services for people 

with disabilities should be provided within existing social, education, health, rehabilitation and 

labor structures – underscoring aims of integration and inclusion – and that procedures should be 

established to facilitate the meaningful participation of people with disabilities in decisionmaking processes.xx 

Direct support for these aims may be found elsewhere in human rights law. For example, 

Article 12(1) of the International Covenant on Civil and Political Rights specifies the right of an 

individual “to liberty of movement and freedom to choose his [/her] residence.”xxi As applied to 

the specific situation of people with disabilities, this right has been interpreted to mean that 

people with disabilities have choices equal to others to move around and live where they choose 

in a community setting.xxii Other human rights reinforce important aspects of living 

independently and in the community including, for example, freedom of expression, freedom of 

association and the right to privacy.xxiii 

Finally, in some cases, international instruments do give explicit expression to living 

independently and in the community.xxiv The UN Standard Rules on the Equalization of 

Opportunities for Persons with Disabilitiesxxv expresses the right to participation in all forms of 

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community life. The Standard Rules further identify both preconditions to equalization of 

opportunities (e.g., awareness-raising, medical care, rehabilitation services, support services) and 

key target areas for equalization of opportunities (e.g., accessibility to physical and 

communications environments, employment, education, recreation). Article 23 of the 

Convention on the Rights of the Child xxvi acknowledges the need for States to take positive 

action to equalize opportunities for children with disabilities to facilitate “active participation in 

the community”xxvii and the “fullest possible social integration.”xxviii Article 15 of the European 

Social Charter similarly supports the right of persons with disabilities to the effective enjoyment 

of “independence, social integration and participation in the life of the community.”xxix The 

drafting of an international convention has the potential to give full expression to living 

independently and in the community for people with disabilities. 

V. Living Independently and in the Community: Experience from the United States 

On February 1, 2001, President Bush launched the “New Freedom Initiative (NFI),” a 

comprehensive national plan to remove existing barriers to community living for Americans with 

disabilities.xxx The proposals of NFI aim to increase access to assistive technology, expand 

educational opportunities, increase the ability of people with disabilities to integrate into the 

employment sphere, and promote increased access to daily community living. NFI reinforces the 

overriding objective of federal disability law, which is to facilitate independent living and full 

participation in communities for people with disabilities. What follows are highlights from the 

U.S. federal law and policy framework that prioritize living independently and in the community 

for Americans with disabilities. While these examples are by no means exhaustive, they provide 

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a general understanding of law and policy developments with particular application to 

independent living and community integration. 

The Americans with Disabilities Act 

The Americans with Disabilities Act (ADA), enacted in 1990, prohibits discrimination on 

the basis of disability in employment, in access to and benefit of public services, and in access to 

public accommodations, transportation and support services, and communications. It is the 

springboard for a number of recent developments that continue to refine, and in some cases 

extend, laws and policies directly aimed at achieving independent living and community 

integration for all people with disabilities. Section 202 of the ADA provides that “no qualified 

individual with a disability shall, by reason of such disability, be excluded from participation in 

or be denied the benefits of the services, programs or activities of a public entity, or be subject to 

discrimination by such entity.”xxxi Significantly, as noted by Senator Harkin (D. Iowa), the 

sponsor of the ADA in the United States Senate, the purpose of Congress in passing this 

legislation was to “ensure once and for all that no Federal agency or judge will ever misconstrue 

the congressional mandate to integrate people with disabilities into the mainstream.”xxxii 

U.S. Supreme Court Olmstead Decision 

ADA

In 1999, the U.S. Supreme Court had occasion to review the scope of disabilitydiscrimination protection under the ADA and its particular relationship to institutionalization and 

community integration. In Olmstead v. L.C.xxxiii the U.S. Supreme Court held (interpreting the 

xxxiv and its implementing regulation 28 C.F.R. § 41.51(d))xxxv that “[u]njustified isolation ... 

is properly regarded as discrimination based on disability.”xxxvi In so holding, the court 

concluded that, in appropriate circumstances, the prohibition against discrimination “may require 

placement of persons with mental disabilities in community settings rather than institutions.”xxxvii 

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The Court therefore acknowledged in Olmstead that discrimination entails practices that 

perpetuate the isolation of people with disabilities. In so doing, the Court signaled a strong 

preference, though not an unqualified right, for community integration for people with 

disabilities, consistent with principles of living independently. U.S. Supreme Court Justice Ruth 

Bader Ginsberg provided two bases for this conclusion in her interpretation of the principle of 

non-discrimination in the ADA: “First, institutional placement of persons who can handle and 

benefit from community settings perpetuates unwarranted assumptions that persons so isolated 

are incapable or unworthy of participating in community life.”xxxviii And, second, “confinement 

in an institution severely diminishes the everyday life activities of individuals, including family 

relations, social contacts, work options, economic independence, education advancement, and 

cultural enrichment.”xxxix The Olmstead decision represents a significant step forward in 

advancing community integration and independent living and has provided the impetus for a 

number of both federal and state initiatives to realize its aims. 

Executive Order on Community-Based Alternatives for Individuals with Disabilities 

In response to the Supreme Court’s decision in Olmstead, the President issued an 

Executive Order on Community-Based Alternatives for Individuals with Disabilities, Executive 

Order No. 13217,xl thereby undertaking to implement the integration requirement of the 

Americans with Disabilities Act as interpreted in the decision.xli Section 1 of the Executive 

Order outlines the following findings and principles which underpin the fundamental goals of 

living independently and in the community: 

1. The United States is committed to community-based alternatives for 

individuals with disabilities and recognizes that such services advance the best 

interests of Americans.xlii 

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2. The United States seeks to ensure that America’s community-based programs 

effectively foster independence and participation in the community for 

Americans with disabilities.xliii 

3. Unjustified isolation or segregation of qualified individuals with disabilities 

through institutionalization is a form of disability-based discrimination 

prohibited by Title II of the Americans with Disabilities Act of 1990...States 

must avoid disability-based discrimination unless doing so would 

fundamentally alter the nature of the service, program or activity provided by 

the State...xliv 

4. The Federal Government must assist states and localities to implement swiftly 

the Olmstead decision, so as to help ensure that all Americans have the 

opportunity to live close to families and friends, to live more independently, to 

engage in productive employment, and to participate in community life.xlv 

The Executive Order requires federal agencies to promote community living for people 

with disabilities through the following means: (i) providing coordinated technical assistance to 

states; (ii) identifying specific barriers in federal law, regulations, policies and practices that 

inhibit community integration; and (iii) enforcing the rights of people with disabilities. 

DHHS Principles for the Development by States of Community-Based Alternatives 

for People with Disabilities 

The U.S. Department of Health and Human Services (DHHS), in response to directives 

set forth in the Executive Order, issued principles for the development by states of plans for 

placing qualified people in less restrictive settings and establishing a waiting list that moves at a 

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reasonable pace to place people in appropriate community settings.xlvi DHHS recommended that 

states: 

• Develop a comprehensive, effectively working plan (or plans) to strengthen community 

service systems and serve people with disabilities in the most integrated setting 

appropriate to their needs; 

• Actively involve people with disabilities, and where appropriate, their family members or 

representatives, in design, development and implementation; 

• Use ... technical assistance material [provided by DHHS] as one of the guides in the 

planning process; and 

• Inform [DHHS] of questions that need resolution and of ideas regarding technical 

assistance that would be helpful.xlvii

DHHS Federal Grants 

In 2001, in furtherance of the Olmstead objectives, the Department of Health and Human 

Services made available some $64 million in federal grants to provide assistance to states, in 

full partnership with people with disabilities, to design and implement programs to support 

community living.xlviii The grants target four major areas for community living: (i) Nursing 

Facility Transition Grants, to enable States to transition eligible people from nursing facilities 

into the community; (ii) Community-integrated Personal Assistance Services and Supports 

Grants, to support State efforts to improve personal assistance services that are consumerdriven or offer individual choice and control; (iii) Real Choice Systems Change Grants, to 

help states design and implement improvements in community long term support systems to 

enable children and adults of any age who have a disability or long-term illness to live in and 

participate in their communities; and (iv) National Technical Assistance Exchange for 

Community Living Grants, to provide technical assistance, information, and training to States, 

families, consumers and other eligible organizations and agencies.xlix Additional grants have 

been awarded in subsequent years. 

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The Ticket to Work and Work Incentives Improvement Act 

The Ticket to Work and Work Incentives Improvement Act of 1999l

 was enacted to 

address a specific barrier to community integration for people with disabilities, namely, the loss 

of public health benefits and supports for people with disabilities who wish to return to work. 

The legislation allows individuals with disabilities to retain their Medicare benefits longer than 

had been previously allowed, and removes limits on the Medicaid buy-in option for workers with 

disabilities. The law also modernizes the employment services system for people with 

disabilities, and extends tax provisions for working families, education, the environment, and 

scientific research. The legislation is therefore designed to allow people to continue receiving 

much-needed benefits and support services to facilitate their participation in the employment 

sphere. 

VI. Conclusion and Implementation Guidelines 

The decision by the U.S. Supreme Court in the Olmstead case is recognized as a 

landmark decision in the disability rights community in the United States. It has served as a 

powerful tool for expanding national and state-level initiatives to end (and over time, one hopes, 

eliminate altogether) institutional placements. More broadly, it has generated policies, programs 

and resources to advance living independently and in the community for all people with 

disabilities. 

The following implementation guidelines are intended to serve as an overall assessment 

tool to be applied in the analysis of law, policy and practice concerning the furthering of living 

independently and in the community for all people with disabilities. While these guidelines are 

derived from the American experience, they are non-exhaustive and are intended to be used as 

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the basis for the development of more detailed and context-specific checklists for use at the 

national and local levels. In sum, they are intended to serve as a basic framework for the 

collection of information that will yield a full analysis and commentary on the implementation of 

obligations concerning living independently and in the community for all people with 

disabilities, based upon principles of choice, independence, autonomy, and community 

integration.li 

General Principles Guiding Laws and Policies to Promote Living Independently and in the 

Community 

• Do programs/legislative initiatives foster the empowerment of persons with disabilities, 

real and informed choice, and active participation in decision processes at the individual 

and systemic levels? 

• In particular, do programs/legislative initiatives foster the real and informed choice of 

individuals with disabilities in key target areas for equalization of opportunities, 

including education, employment, transportation, housing, health care and 

rehabilitation/habilitation support services? 

Specific Issues of Implementation 

Living Independently 

• Do programs/legislative initiatives foster the capacity of individuals with disabilities 

to live independently through support for living skills development in the following 

target areas: 

o Training in individual and systemic advocacy 

o Service relating to securing food, clothing and shelter 

o Training in managing personal assistants 

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o Training in using assistive devices 

Is there specialized planning for making the transition to living independently and in the 

community? 

• Are there programs/legislative initiatives in place to enable people with disabilities to 

live independently through the provision of long-term services and formal and 

informal supports in the community, such as assistive devices? 

• Are there programs/legislative initiatives in place to enable people with disabilities to 

live independently and in the community, including through the provision of 

financial support where appropriate? 

Social & Community Integration 

• Is there in place a comprehensive plan to create community-based services for people 

with disabilities? 

o Are people with psycho-social disabilities and intellectual disabilities included in 

such plans? 

o Does the plan include the provision of support services for people detained in 

institutions who can live in the community? 

o Does the plan create independent community supports for individuals without 

families or individuals in abusive family situations? 

o Does the plan introduce awareness-raising measures to address 

community/guardian/parental opposition?

• What opportunities are available for people with disabilities to live in the community, 

with their choice of affordable, accessible, quality housing? 

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• What opportunities exist in the community for people with disabilities to access 

affordable, accessible transportation?

• Do people with disabilities have access to appropriately trained personal assistants? 

• Are appropriate and quality health care services available for people with disabilities in 

their communities? 

• Are appropriate and quality rehabilitation/habilitation services available for people with 

disabilities in their communities? 

• What opportunities are available for people with disabilities to be employed in their 

communities? Are there opportunities for supported employment? 

• What support is available to people with disabilities living in rural areas to improve their 

access to services so that they may remain in their communities? 

Acknowledgements 

The National Council on Disability wishes to express its appreciation to Janet E. Lord and 

Katherine N. Guernsey, Consultants, for drafting this topic paper. 

i

 For a comprehensive overview of the founding of the independent living movement in the United States, see Kathy 

Martinez (with Barbara Duncan), “The Road to Independent Living in the USA: An Historical Perspective and 

Contemporary Challenge” 20 Disability World (Sept./Oct. 2003). Available at: http://www.disabilityworld.org/09-

10_03/il/ilhistory.shtmlnce; G. DeJong, The Movement for Independent Living: Origins, Ideology, and Implications 

for Disability Research (East Lansing, MI: Michigan State University, 1979). See also Joseph P. Shapiro, No Pity: 

People with Disabilities Forging a New Civil Rights Movement 184 – 210 (1993). ii For more on traditional models of disability see “A White Paper – Understanding the Role of an International 

Convention on the Human Rights of People with Disabilities: An analysis of the legal, social and practical 

implications for policy makers and disability and human rights advocates in the United States,” pp. 27-28 (National 

Council on Disability, May 23, 2002), available at: 

http://www.ncd.gov/newsroom/publications/2002/publications.htm. iii David L. Braddock and Susan L. Parish, “An Institutional History of Disability,” in Handbook of Disability 

Studies, (Gary Albrecht, Katherine D. Seelman, & Michael Bury, eds., Sage Publications, 2001), p. 48. Ed Roberts, 

a founder of the independent living movement in the United States, identified four core components of the 

movement, namely, (i) individual self-determination; (ii) self-image and public education; (iii) advocacy; and (iv) 

service to all. See Ed Roberts, “A History of the Independent Living Movement: A Founder’s Perspective,” in 

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Psychological Interventions with Physically Disabled Persons 231-34 (Heller et al, New Brunswick, NJ: Rutgers 

University Press, (1989)). 

iv For more on the social model of disability, see especially Simi Linton, Claiming Disability: Knowledge and 

Identity 11 (New York University Press, 1998). v

 Simi Litvak and Alexandra Enders, “The Interface between Individuals and Environments,” in Handbook of 

Disability Studies, (Gary Albrecht, Katherine D. Seelman, & Michael Bury, eds. Sage Publications, 2001), p. 725 

vi For a comprehensive listing of independent living centers throughout the United States, see 

http://www.ncd.gov/living_centers.htm 

vii David L. Braddock and Susan L. Parish, “An Institutional History of Disability,” in Handbook of Disability 

Studies, (Gary Albrecht, Katherine D. Seelman, & Michael Bury, eds., Sage Publications, 2001), p. 48. 

viii Within the United States there are now more than 1,200 self-advocacy chapters addressing a range of issues, such 

as institutional closures and quality community supports and services. For an excellent study on the rise of the selfadvocacy movement by people with disabilities, see Mary Hayden, The Self Advocacy Movement: The 

Unacknowledged Civil Rights Movement (Mary E. Switzer Fellowship, US Department of Education, 2004). See 

also Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement 184 – 210 (1993). 

For a worldwide directory of self-advocacy organizations of people with intellectual disabilities, see 

http://www.peoplefirst.org.uk/pflinks.html. ix While the psychiatric survivor community has embraced (and significantly added content to) the principles 

underlying the independent living movement, it has also noted the failure of the mainstream disability rights and 

independent living movements to fully embrace the rights claims of people with psychiatric disabilities. See 

National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak For 

Themselves (Washington, DC, January 20, 2002), p. 10, available at: 

http://www.ncd.gov/newsroom/publications/2000/privileges.htm#1. x

 Andrew I. Batavia, “The Growing Prominence of Independent Living and Consumer Direction as Principles in 

Long-Term Care: A Content Analysis and Implications for Elderly People with Disabilities,” 10 Elder L.J. 263, 266 

(2002). 

xi “Discussion Paper on Founding Principles of a Convention on Rights of Persons with Disabilities,” Danish 

Institute for Human Rights, A/AC.265/2003/CRP/9, available at: 

http://www.un.org/esa/socdev/enable/rights/a_ac265_2003_crp9.htm. xii David L. Braddock and Susan L. Parish, “An Institutional History of Disability,” in Handbook of Disability 

Studies, (Gary Albrecht, Katherine D. Seelman, & Michael Bury, eds., Sage Publications, 2001), p. 48. xiii See generally Mental Disability Rights International, Not on the Agenda: Human Rights of People with 

Disabilties in Kosovo (2002); Human Rights & Mental Health: Mexico (2000); Children in Russia's Institutions: 

Human Rights and Opportunities for Reform (1999); Human Rights & Mental Health: Hungary (1997); Human 

Rights & Mental Health: Uruguay (1995). These reports are available at <http://www.MDRI.org>. For a detailed 

report outlining specific abuses against people labeled with psychiatric disorders, see National Council on 

Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves 

(Washington, DC, January 20, 2002) available at: 

http://www.ncd.gov/newsroom/publications/2000/privileges.htm#1. 

xivNational Council on Disability, Olmstead: Reclaiming Institutionalized Lives ( Washington, DC, September 29, 

2003), available at: http://www.ncd.gov/newsroom/publications/2003/pdf/reclaimabridged.htm. xv While the principal international human rights conventions do not explicitly prohibit disability discrimination, 

their non-discrimination clauses are well understood to apply to people with disabilities. See Gerard Quinn and 

Theresia Degener, et al. “Human Rights and Disability: The current use and future potential of United Nations 

human rights instruments in the context of disability” (Office of the High Commissioner for Human Rights, 2002), 

p. 37. It is clear, for example, that the non-discrimination clauses of the International Covenant on Civil and 

Political Rights (Article 2 & 26) do cover disability discrimination under the umbrella of the term “other status.” 

See International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), U.N. GAOR 21st Sess., Supp. No. 

16, at 52, U.N. Doc. A/6316 (1966), entered into force Mar. 23, 1976. The drafting of a new convention on the 

rights of people with disabilities will introduce a disability-specific non-discrimination provision into the human 

rights framework. 

xvi Rights to participate in decision-making under human rights law traditionally centered around participation in 

political life, principally through voting rights and the right to hold public office. See, e.g., International Covenant 

on Civil and Political Rights, G.A. res. 2200A (XXI), U.N. GAOR 21st Sess., Supp. No. 16, at 52, U.N. Doc. A/6316 

(1966), entered into force Mar. 23, 1976, Article 25. Human rights law has broadened the scope of participation 

17
rights and many specialized conventions specifically address the application of these rights in a variety of contexts. 

For further examples and discussion, see “A Reference Tool – Understanding the Potential Content and Structure of

an International Convention on the Human Rights of People with Disabilities: Sample treaty provisions drawn from

existing international instruments,” (National Council on Disability, 2002), available at: 

http://www.ncd.gov/newsroom/publications/2002/publications.htm. 

xvii G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc. A/6316 (1966), entered into force Jan. 

3, 1976. 

xviii General Comment No. 5 (1994) on Persons with Disabilities, report on the Tenth and Eleventh Sessions, U.N. 

ESCOR 1995, Supp. No. 2 [according to U.N. Doc. E/1995/22/Corr.1-E/C.12/1994/20/Corr.1], at 102, para. 15, 

U.N. Doc. E/1995/22-E/C.12/1994/20 (1995). For the sake of completeness, it should be noted that the MI

Principles express a preference for community living arrangements for people with mental disabilities, though it is 

more qualified than other documents in providing that “[e]very person with mental illness shall have the right to live 

and work, as far as possible, in the community.” Principles for the Protection of Persons with Mental Illness and the

Improvement of Mental Health Care (MI Principles), G.A. Res. 46/119, U.N. GAOR 46th Session., Supp. No. 49, 

Annex at 188-92, U.N. Doc. A/46/49 (1991). Gerard Quinn and Theresia Degener have also noted in the seminal

study that the MI Principles “give valuable guidance for the interpretation of Article 7 [of the International Covenant

on Civil and Political Rights) in the context of institutionalized disabled persons.” See Gerard Quinn and Theresia 

Degener, et al. “Human Rights and Disability: The current use and future potential of United Nations human rights 

instruments in the context of disability” (Office of the High Commissioner for Human Rights, 2002), p. 38. The MI 

Principles are highly disfavored by many in the psychiatric survivor community and are clearly outmoded, 

something that a new convention offers the potential to correct. For a critique of the MI Principles, see World Users 

and Survivors of Psychiatry, Position Paper on the Principles for the Protection of Persons with Mental Illness (July 

2001), available at: http://www.wnusp.org/wnusp%20evas/Dokumenter/positionpaper.html. xix General Comment No. 5 (1994) on Persons with Disabilities, report on the Tenth and Eleventh Sessions, U.N. 

ESCOR 1995, Supp. No. 2 [according to U.N. Doc. E/1995/22/Corr.1-E/C.12/1994/20/Corr.1], at 102, para. 15, 

U.N. Doc. E/1995/22-E/C.12/1994/20 (1995). xx Leandro Despouy, Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of

Minorities, Human Rights and Disabled Persons, p. 29, U.N. Doc. E/92/XIV.4 (1992). xxi International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), U.N. GAOR 21st Sess., Supp. No. 

16, at 52, U.N. Doc. A/6316 (1966), entered into force Mar. 23, 1976, Article 25. 

xxii See Gerard Quinn and Theresia Degener, et al. “Human Rights and Disability: The current use and future 

potential of United Nations human rights instruments in the context of disability” (Office of the High Commissioner 

for Human Rights, 2002), p. 39. 

xxiii International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), U.N. GAOR 21st Sess., Supp. No. 

16, at 52, U.N. Doc. A/6316 (1966), entered into force Mar. 23, 1976, Article 19 (freedom of expression); Article 22 

(freedom of association); Article 17 (right to privacy). 

xxiv For a detailed overview of sources for a right to community integration in international law, see Eric Rosenthal 

and Arlene Kanter, “People with Disabilities in Institutions and the Emerging Right to Community Integration for 

People with Disabilities under United States and International Law,” paper presented for the Disability Rights and

Education Defense Fund (DREDF) Conference (Washington, DC, 2000). 

xxv 85th Plenary meeting, 20 Dec. 1993, para. 1, Part IV, A/Res/48/96. 

xxvi Convention on the Rights of the Child, G.A. res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. 

A/44/49 (1989), entered into force Sept. 2, 1990. 

xxvii Id. Article 23(1). 

xxviii Id. Article 23(3). 

xxix Article 15 states: 

With a view to ensuring to persons with disabilities, irrespective of age and the nature and origin of their disabilities, 

the effective exercise of the right to independence, social integration and participation in the life of the community, 

the Parties undertake, in particular: 

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1. to take the necessary measures to provide persons with disabilities with guidance, education and vocational 

training in the framework of general schemes wherever possible or, where this is not possible, through 

specialised bodies, public or private; 

2. to promote their access to employment through all measures tending to encourage employers to hire and 

keep in employment persons with disabilities in the ordinary working environment and to adjust the 

working conditions to the needs of the disabled or, where this is not possible by reason of the disability, by 

arranging for or creating sheltered employment according to the level of disability. In certain cases, such 

measures may require recourse to specialised placement and support services; 

3. to promote their full social integration and participation in the life of the community in particular through 

measures, including technical aids, aiming to overcome barriers to communication and mobility and 

enabling access to transport, housing, cultural activities and leisure. 

(Revised) European Social Charter, European Treaty Series, n. 163, Strasbourg 1996, Council of Europe, available 

at: http://conventions.coe.int/treaty/en/treaties/html/163.htm. xxx Available at: http://www.whitehouse/gov/news/freedominitiative.html. xxxi 42 U.S.C. § 12132. xxxii 135 Cong. Rec. S4986 (daily ed. May 9, 1989) (Statement of Senator Harkin). xxxiii 527 U.S. 581 (1999). Olmstead v. L.C. was brought by a woman with disabilities who was institutionalized in a 

state mental hospital in Georgia. The plaintiff, Lois Curtis, challenged her continued confinement in the institution

on the basis that, according to physicians treating her, she no longer required inpatient treatment but instead would 

benefit from community residential and habilitation services. Ms. Curtis claimed violations of the Due Process 

clause of the U.S. Constitution as well as violations of the Americans with Disabilities Act. 

xxxiv 42 U.S.C. § 12132. xxxv 28 C.F.R. § 35.130(d). 

xxxvi 527 U.S. at 597. 

xxxvii 527 U.S. at 587. 

xxxviii Id. at 600 xxxix Id. at 601. xl Exec. Order No. 13,217, 66 Fed. Reg. at 33,155 (2001). An Executive Order is a rule or order having the force of

law issued by the U.S. President. 

xli For an overview of the implementation of Olmstead in federal and state policies and programs, see Mary C. 

Cerreto, “Olmstead: The Brown v. Board of Education for Disability Rights - Promises, Limits and Issues, 3 Loy. J.

Pub. Int. L. 47 (2001). 

xlii Id. xliii Id. 

xliv Id. 

xlv Id. 

xlvi Id. 

xlvii Letter to State Medicaid Directors, January 14, 2000, available at:

http://www.cms.hhs.gov/states/letters/smd1140a.asp

xlviii For detailed information on the Systems Change Grants, see 

http://www.cms.hhs.gov/systemschange/backgrnd.asp. xlix Id. l

 Public Law 106-70. li A number of these implementation guidelines are derived from recommendations and plans to promote living

independently and in the community both in the United States, as well as elsewhere. See, e.g., “Olmstead: 

Reclaiming Institutionalized Lives” (National Council on Disability, Washington, DC, September 29, 2003), pp. 

176-190, available at: http://www.ncd.gov/newsroom/publications/2003/pdf/reclaimabridged.htm; MDRI, “Not on

the Agenda: Human Rights of People with Mental Disabilities in Kosovo,” (Washington, DC: 2002), pp. 25-30,

available at: www.mdri.org; Minister of Disability Issues, New Zealand, “the New Zealand Disability Strategy: 

Making a World of Difference,” (Wellington, NZ: April 2001), pp. 22-23, available at:

http://www.odi.govt.nz.htm.

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